#millionsmissing

43,998 posts

«ME-syk / usynlig syk»
Hva du ser - Hvordan jeg føler 🤕

#millionsmissingstavanger #millionsmissingnorway #myalgiskencefalomyelit #millionsmissing #mecfs #chronicillness #chronicpain #canyouseemenow #meaction #livetmedME #invisibleillness

«ME-syk / usynlig syk» Hva du ser - Hvordan jeg føler 🤕 #millionsmissingstavanger #millionsmissingnorway #myalgiskencefalomyelit #millionsmissing #mecfs #chronicillness #chronicpain #canyouseemenow #meaction #livetmedME #invisibleillness - 36 seconds ago

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😴 S L E E P 😴
This is the second time I've tried to post this 😶 I forgot to put it in black and white. 🙈
I tend to oversleep rather than under which is unusual for most people with #mecfs. Occasionally I can struggle to get to sleep due to stress or being overtired so I've put together 10 things that help me get back into my norm and to try and sleep better. I can't promise you'll feel refreshed after sleeping- oh the days when that worked 😂 the link to this blog post is in my bio as always. 
What helps you sleep? Do you over sleep or not sleep at all with your ME? I am curious to know. °
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#sleepallday #sleepyhead #millionsmissing #canyouseeMEnow #butyoudontlooksick #myalgicencephalopathy #myalgicencephalomyelitis #cfs #meawarenessmonth #ontheblog #blogday #chronicillnessblogger #spoonie #seeingmeinreality #SMIRblog #chroniclife #wherethetiredgirlsare #clippertea

😴 S L E E P 😴 This is the second time I've tried to post this 😶 I forgot to put it in black and white. I tend to oversleep rather than under which is unusual for most people with #mecfs . Occasionally I can struggle to get to sleep due to stress or being overtired so I've put together 10 things that help me get back into my norm and to try and sleep better. I can't promise you'll feel refreshed after sleeping- oh the days when that worked the link to this blog post is in my bio as always. What helps you sleep? Do you over sleep or not sleep at all with your ME? I am curious to know. ° ° ° #sleepallday #sleepyhead #millionsmissing #canyouseeMEnow #butyoudontlooksick #myalgicencephalopathy #myalgicencephalomyelitis #cfs #meawarenessmonth #ontheblog #blogday #chronicillnessblogger #spoonie #seeingmeinreality #SMIRblog #chroniclife #wherethetiredgirlsare #clippertea - 3 minutes ago

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• @els.design ik wacht mee.. Els.

#ikwachtmee @ikwachtmee

Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden.
Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be 💙👊✊ #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els. #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt

@els.design ik wacht mee.. Els. #ikwachtmee @ikwachtmee Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden. Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els . #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt - 25 minutes ago

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Had such a lovely time in the West! I never finished the ME photo challenge but I think it’s a good example of how unpredictable and unreliable this condition makes my life ✌️ My energy is pretty low (even by my standards) atm and I struggled through a lot of the time away. Feeling a bit better after a restful weekend though ✨

Had such a lovely time in the West! I never finished the ME photo challenge but I think it’s a good example of how unpredictable and unreliable this condition makes my life ️ My energy is pretty low (even by my standards) atm and I struggled through a lot of the time away. Feeling a bit better after a restful weekend though - 57 minutes ago

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I found a wip from years ago. I barely remember doing it. I ought to finish it really 🦋
#drawingtherapy #drawing #drawinginbed #artsanity #arttherapy #pwme #chronicillnessart #chronicillness #bedridden #instaart #spoonie #spoonieart #spoonieartist #artistsofinstagram #artistsoninstagram #courageouscreative #creativeexpression #disabledartist #MEwarrior #fibrowarrior #create #fuschia #butterflies #wip #dragonfly #naturedrawing #millionsmissing

I found a wip from years ago. I barely remember doing it. I ought to finish it really 🦋 #drawingtherapy #drawing #drawinginbed #artsanity #arttherapy #pwme #chronicillnessart #chronicillness #bedridden #instaart #spoonie #spoonieart #spoonieartist #artistsofinstagram #artistsoninstagram #courageouscreative #creativeexpression #disabledartist #MEwarrior #fibrowarrior #create #fuschia #butterflies #wip #dragonfly #naturedrawing #millionsmissing - 1 hour ago

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1 hour ago

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Det sägs att kejsarna på romartiden hade tjänare som satt bredvid och viskade i örat ”du är inte odödlig, du är bara en människa du också” Jag vet inte huruvida det ligger någon sanning i det. Det låter väldigt klokt i alla fall. För när en människa eller grupp får stor makt utan att behöva stå till svars för hur man brukar makten är vi ute på riktigt tunn is. När makten blir viktigare än den lilla människan utanför maktens centrum. Människan som är på riktigt. Av kött och blod. Som är mer än en siffra på ett papper. Då när vi börjar behandla människor som dessa nummer. När makten är så stor att man tycker sig ha rätten att ignorera domstolsbeslut. Då är gränsen för vad som kan räknas som anständigt sedan länge passerad.

#mylongwalkforme #mecfs #mecfsawareness #invisibleillness #myalgicencephalomyelitis #chronicfatigue #chronicpain #millionsmissing #spreadingawareness #positivevibes #inspiration  #chronicillness #jagärMEdEr #MEAllierad #fk #försäkringskassan #politiker #makt #maktmissbruk #domstol #förvaltningsrätten #regeringen #riksdag

Det sägs att kejsarna på romartiden hade tjänare som satt bredvid och viskade i örat ”du är inte odödlig, du är bara en människa du också” Jag vet inte huruvida det ligger någon sanning i det. Det låter väldigt klokt i alla fall. För när en människa eller grupp får stor makt utan att behöva stå till svars för hur man brukar makten är vi ute på riktigt tunn is. När makten blir viktigare än den lilla människan utanför maktens centrum. Människan som är på riktigt. Av kött och blod. Som är mer än en siffra på ett papper. Då när vi börjar behandla människor som dessa nummer. När makten är så stor att man tycker sig ha rätten att ignorera domstolsbeslut. Då är gränsen för vad som kan räknas som anständigt sedan länge passerad. #mylongwalkforme #mecfs #mecfsawareness #invisibleillness #myalgicencephalomyelitis #chronicfatigue #chronicpain #millionsmissing #spreadingawareness #positivevibes #inspiration #chronicillness #jagärMEdEr #MEAllierad #fk #försäkringskassan #politiker #makt #maktmissbruk #domstol #förvaltningsrätten #regeringen #riksdag - 1 hour ago

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Jennifer Brea, patient, one of the world’s biggest ME/CFS advocates and creator of award winning “Unrest” documentary about the disease, is in complete remission. After eight years of absolute hell, at her worst unable to tolerate even the rustle of bed sheets, has no more symptoms. How? About a year ago she found another to to add to her long list of comorbidities: craniocervical instability and tethered spinal cord. She had surgery to fix those. Several months since surgery, all her ME/CFS symptoms are completely gone. She’s off all medication. This is nothing short of miraculous. But it’s not uncommon. Another guy shared his story. For years, with really severe CFS, he was ridiculed by every doctor and neurologist. He was almost paralysed, unable to breathe, HR of 30 doctors told him it’s anxiety!!! When he eventually had surgery, he also experienced complete remission. 
Any problems with the spinal cord and hence the autonomic nervous system, have the power to ruin just about every system in your body hence the list of symptoms as long as the Eiffel Tower. 
This is what happens when you finally find a doctor that listens and takes you seriously. You must also have the means, which are far beyond most patients. There are four specialists in CCI in the world: three in the US and one in Spain. It costs £100k I’ve been told. Everyone else, unless you have an accident, will laugh you out of the room. Doctors don’t believe this can occur randomly. Thing is, Jen and this guy both had viral onset CFS. No idea what caused their CCI and thethered cord.
This shows, you must never stop fighting to be heard. 99 doctors may kick you out of the door and tell you it’s in your head. One doctor might have answers needed to get your life back.... still, you need to have the means.... But it gives great hope that when you finally stumble upon the cause of your CFS, a solution may already exist. That’s what I’m praying for....

Jennifer Brea, patient, one of the world’s biggest ME/CFS advocates and creator of award winning “Unrest” documentary about the disease, is in complete remission. After eight years of absolute hell, at her worst unable to tolerate even the rustle of bed sheets, has no more symptoms. How? About a year ago she found another to to add to her long list of comorbidities: craniocervical instability and tethered spinal cord. She had surgery to fix those. Several months since surgery, all her ME/CFS symptoms are completely gone. She’s off all medication. This is nothing short of miraculous. But it’s not uncommon. Another guy shared his story. For years, with really severe CFS, he was ridiculed by every doctor and neurologist. He was almost paralysed, unable to breathe, HR of 30 doctors told him it’s anxiety!!! When he eventually had surgery, he also experienced complete remission. Any problems with the spinal cord and hence the autonomic nervous system, have the power to ruin just about every system in your body hence the list of symptoms as long as the Eiffel Tower. This is what happens when you finally find a doctor that listens and takes you seriously. You must also have the means, which are far beyond most patients. There are four specialists in CCI in the world: three in the US and one in Spain. It costs £100k I’ve been told. Everyone else, unless you have an accident, will laugh you out of the room. Doctors don’t believe this can occur randomly. Thing is, Jen and this guy both had viral onset CFS. No idea what caused their CCI and thethered cord. This shows, you must never stop fighting to be heard. 99 doctors may kick you out of the door and tell you it’s in your head. One doctor might have answers needed to get your life back.... still, you need to have the means.... But it gives great hope that when you finally stumble upon the cause of your CFS, a solution may already exist. That’s what I’m praying for.... - 2 hours ago

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Thank you so much everyone for your support. You are all so lovely, kind and thoughtful and I am so glad to have found you all 💜

I am so touched by everyone's kindness and generosity. You have really made this stressful, difficult time a lot easier for me and I can't thank you enough 💜

Love and hugs to you all 💜🤗🥰😚😚😚
#FarawayGirlSpoonie #ME #Fibromyalgia #MyalgicEncephalomyolitis #chronicpainsyndrome #spineissues #Osteoarthritis #widespreadpain #fatigue #wheelchair #disabled #chronicillness #palegirl #spoonie #depression #anxiety #GAD #mentalillness  #MillionsMissing #hearingloss #hearingaids #brainfog #Bumblebee

Thank you so much everyone for your support. You are all so lovely, kind and thoughtful and I am so glad to have found you all I am so touched by everyone's kindness and generosity. You have really made this stressful, difficult time a lot easier for me and I can't thank you enough Love and hugs to you all 🤗🥰 #FarawayGirlSpoonie #ME #Fibromyalgia #MyalgicEncephalomyolitis #chronicpainsyndrome #spineissues #Osteoarthritis #widespreadpain #fatigue #wheelchair #disabled #chronicillness #palegirl #spoonie #depression #anxiety #GAD #mentalillness #MillionsMissing #hearingloss #hearingaids #brainfog #Bumblebee - 2 hours ago

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#ME #CFS is a #nasty #thieving #illness. I post a lot about the things I enjoy. Today I'm #traveling for a #conference and as much as I'd love to look at the view and enjoy an easy train journey, I can't.
I tried to nap but the #sensoryoverload is too much. The #beautiful #sunlight is too #bright. I can't get comfortable because of the aches and pains. My clothes are too heavy for my shoulders. It's a #disorder that robs you of the little things you take for granted every day. It #steals your #happiness. I will #getthroughit today, but I'll feel the effects tomorrow. At least its a #beautifulday though.. #millionsmissing #myalgicencephalomyelitis #mecfs #invisibleillness #spoonie #chronicillness

#ME #CFS is a #nasty #thieving #illness . I post a lot about the things I enjoy. Today I'm #traveling for a #conference and as much as I'd love to look at the view and enjoy an easy train journey, I can't. I tried to nap but the #sensoryoverload is too much. The #beautiful #sunlight is too #bright . I can't get comfortable because of the aches and pains. My clothes are too heavy for my shoulders. It's a #disorder that robs you of the little things you take for granted every day. It #steals your #happiness . I will #getthroughit today, but I'll feel the effects tomorrow. At least its a #beautifulday though.. #millionsmissing #myalgicencephalomyelitis #mecfs #invisibleillness #spoonie #chronicillness - 2 hours ago

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Attitude तो बच्चे 👶👶 दिखाते है 💪💪 हम तो लोगो को  उनकी औकात दिखाते है me& my #friendshipquotes #naturephotography #millionsmissing #photography #attitude #friends

Attitude तो बच्चे दिखाते है हम तो लोगो को उनकी औकात दिखाते है me& my #friendshipquotes #naturephotography #millionsmissing #photography #attitude #friends - 3 hours ago

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Dr Myhill has asked us to share this with you. Dr Myhill is speaking at the #FatigueSuperconference. It is free to attend and is it is online, it can be attended from wherever you are (internet providing...) You can find the full details below or via the link in our bio. If you register, you can view 2 sessions now, and of course you can choose to watch Dr Myhill :) Register here - https://www.fatiguesuperconference.com

Dr Myhill has asked us to share this with you. Dr Myhill is speaking at the #FatigueSuperconference . It is free to attend and is it is online, it can be attended from wherever you are (internet providing...) You can find the full details below or via the link in our bio. If you register, you can view 2 sessions now, and of course you can choose to watch Dr Myhill :) Register here - https://www.fatiguesuperconference.com - 4 hours ago

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#modelswanted #modelling #feel #world #styled #surat #fashion #osm #fembruharmy😎👨‍✈️ #mumbaimodels #posemaker😘 #attitude #millionsmissing #kill #smart #boobs #fuck #fucklove #kiss

#modelswanted #modelling #feel #world #styled #surat #fashion #osm #fembruharmy 😎#mumbaimodels #posemaker #attitude #millionsmissing #kill #smart #boobs #fuck #fucklove #kiss - 4 hours ago

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Heute gehts für die Kids und mich Richtung unsere neue Heimat. Nach drei Jahren ziehen wir wieder in die Heidelberger Ecke und ich freue mich sehr! Zumal wir nach über 2 Monaten endlich wieder als Familie miteinander vereint sein werden. Dieses Bild entstand übrigens im Rahmen unseres „pregnancy announcement“ vor gut 4 1/2 Jahren! Wie jung und frisch und bisschen naiv wir doch aussehen 🙈 dieser starke Mann hat die letzten Wochen den Umzug ohne meine Hilfe gewuppt und ich bin soooo stolz auf ihn!! 😘
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#millionsmissing #mecfs #speciallove #stxbp1 #stxbp1strong #inchstones #unconditionallove #cameramama #candidchildhood #clickinmoms #thesincerestoryteller #hellostoryteller #letthekids #family #unposed #familyphotography #familyphotographer #storytellingmama #germanphotographer #dcpresets #mecfsawareness #memorylane #husbandandwifey #loveyoumuchos

Heute gehts für die Kids und mich Richtung unsere neue Heimat. Nach drei Jahren ziehen wir wieder in die Heidelberger Ecke und ich freue mich sehr! Zumal wir nach über 2 Monaten endlich wieder als Familie miteinander vereint sein werden. Dieses Bild entstand übrigens im Rahmen unseres „pregnancy announcement“ vor gut 4 1/2 Jahren! Wie jung und frisch und bisschen naiv wir doch aussehen dieser starke Mann hat die letzten Wochen den Umzug ohne meine Hilfe gewuppt und ich bin soooo stolz auf ihn!! . . . . #millionsmissing #mecfs #speciallove #stxbp1 #stxbp1strong #inchstones #unconditionallove #cameramama #candidchildhood #clickinmoms #thesincerestoryteller #hellostoryteller #letthekids #family #unposed #familyphotography #familyphotographer #storytellingmama #germanphotographer #dcpresets #mecfsawareness #memorylane #husbandandwifey #loveyoumuchos - 4 hours ago

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Horizontal parenting win..... teaching Miss Bells hand stitching.
#M.E #CFS #M.Egoddess #chronicillness #spoonielife #chronicillnesswarrior #myalgicencephalomyelitisawareness #M.Elife #mecfs #cfsme #mecfswarrior #millionsmissing #chronicillnessparenting

Horizontal parenting win..... teaching Miss Bells hand stitching. #M .E #CFS #M .Egoddess #chronicillness #spoonielife #chronicillnesswarrior #myalgicencephalomyelitisawareness #M .Elife #mecfs #cfsme #mecfswarrior #millionsmissing #chronicillnessparenting - 6 hours ago

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Things are not always as they seem. 🎭...We learn to hide it well. 
The silver lining, however, is that I can finally hide it again. Convincing even, I’m told. These smiles are genuine, but my pain is ##invisible.

That wall.... ughhhh the dreaded wall that hits you like a brick to the head. 
It is unavoidable. But you do what you have to. Especially for your baby’s birthday.. These boys of mine will *always* get my everything. 💝
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##sacrifice ##lightchasing ##lookscanbedeceiving ##butyoudontlooksick ##canyouseeMEnow ##invisibleillness ##consequences ##understandus ##millionsmissing ##butthereishope ##symptomreversal ##dibromyalgiaisreal ##fibromyalgia ##fms ##chronicfatigue ##chronicfatiguesyndrome ##cfsme ##mecfs ##fibrowarrior ##fibrofighter ##ihideit ##wealldo ##idontfakebeingsickifakebingwell
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##buticanfakeitagain ##signofthingstocome ##exceptingthefaking ##fibromyalgiahope ##fortheloveoflife 
##thatfibromama

Things are not always as they seem. ...We learn to hide it well. The silver lining, however, is that I can finally hide it again. Convincing even, I’m told. These smiles are genuine, but my pain is ##invisible . That wall.... ughhhh the dreaded wall that hits you like a brick to the head. It is unavoidable. But you do what you have to. Especially for your baby’s birthday.. These boys of mine will *always* get my everything. _____________🦋 ##sacrifice ##lightchasing ##lookscanbedeceiving ##butyoudontlooksick ##canyouseeMEnow ##invisibleillness ##consequences ##understandus ##millionsmissing ##butthereishope ##symptomreversal ##dibromyalgiaisreal ##fibromyalgia ##fms ##chronicfatigue ##chronicfatiguesyndrome ##cfsme ##mecfs ##fibrowarrior ##fibrofighter ##ihideit ##wealldo ##idontfakebeingsickifakebingwell _____________🦋 ##buticanfakeitagain ##signofthingstocome ##exceptingthefaking ##fibromyalgiahope ##fortheloveoflife ##thatfibromama - 6 hours ago

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- Tuesday 21st May 2019

As you know I'm Anaemia, I have Fibromyagia, ME, CFS, #PCOS and also as I'm losing a lot of blood since the 7th of March so that doesn't help either this has been going on before the female issue hopefully when I get my next test done then I can hopefully get treatment done for the inside of my issues and hopefully get some proper treatment but you never know with the NHS in the UK. Then more test to find out if I have (bear with me as I can't spell this word so I spell it out how it sounds)  endo-me-trio-sis
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 B12 deficiency, I take high dosage of Vitamin D, I'm also on Calcium, Potassium, Iron and Magnesium tablets.
And I'm waiting on an appointment regarding blood test and hopefully get vitamin b12 treatment again got for some reason it's really hard for me to get the doctor to prescribe me vitamin b12. .
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#journeybattlesTP/#jbFightAgainstFibromyalgi ..
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#MillionsMissing -- #CanYouSeeMeNow .. #CFIDS -- #Fibro -- #CFS .. #ME .. #CFSme ..#fatigue .. #Anxiety .. #mentalhealthillness .. #depression ..#mentalhealth .. #FibroIsReal .. #Chronicpain .. #CBT .. #sucicdesupport ... #eatingissues .. #Samaritans .. #arthritis .. #fibrofog .. #BPD .. #dontsufferinsilence .. #depressed.. #invisibleillness ..#misunderstood

- Tuesday 21st May 2019 As you know I'm Anaemia, I have Fibromyagia, ME, CFS, #PCOS and also as I'm losing a lot of blood since the 7th of March so that doesn't help either this has been going on before the female issue hopefully when I get my next test done then I can hopefully get treatment done for the inside of my issues and hopefully get some proper treatment but you never know with the NHS in the UK. Then more test to find out if I have (bear with me as I can't spell this word so I spell it out how it sounds) endo-me-trio-sis . . B12 deficiency, I take high dosage of Vitamin D, I'm also on Calcium, Potassium, Iron and Magnesium tablets. And I'm waiting on an appointment regarding blood test and hopefully get vitamin b12 treatment again got for some reason it's really hard for me to get the doctor to prescribe me vitamin b12. . . #journeybattlesTP /#jbFightAgainstFibromyalgi .. . . #MillionsMissing -- #CanYouSeeMeNow .. #CFIDS -- #Fibro -- #CFS .. #ME .. #CFSme ..#fatigue .. #Anxiety .. #mentalhealthillness .. #depression ..#mentalhealth .. #FibroIsReal .. #Chronicpain .. #CBT .. #sucicdesupport ... #eatingissues .. #Samaritans .. #arthritis .. #fibrofog .. #BPD .. #dontsufferinsilence .. #depressed .. #invisibleillness ..#misunderstood - 6 hours ago

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- Tuesday 21st May 2019

As you know I'm Anaemia, I have Fibromyagia, ME, CFS, #PCOS and also as I'm losing a lot of blood since the 7th of March so that doesn't help either this has been going on before the female issue hopefully when I get my next test done then I can hopefully get treatment done for the inside of my issues and hopefully get some proper treatment but you never know with the NHS in the UK. Then more test to find out if I have (bear with me as I can't spell this word so I spell it out how it sounds)  endo-me-trio-sis
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.
 B12 deficiency, I take high dosage of Vitamin D, I'm also on Calcium, Potassium, Iron and Magnesium tablets.
And I'm waiting on an appointment regarding blood test and hopefully get vitamin b12 treatment again got for some reason it's really hard for me to get the doctor to prescribe me vitamin b12. .
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#journeybattlesTP/#jbFightAgainstFibromyalgi ..
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#MillionsMissing -- #CanYouSeeMeNow .. #CFIDS -- #Fibro -- #CFS .. #ME .. #CFSme ..#fatigue .. #Anxiety .. #Anemic .. #depression ..#immunesystem ..#FibroIsReal .. #Chronicpain .. #redbloodcells .. #MuscleSpasms ... #eatingissues .. #rheumatoid.. #arthritis .. #fibrofog .. #spoonie .. #FlareUp .. #MyalgicEncephalomyelitis .. #invisibleillness ..#misunderstood

- Tuesday 21st May 2019 As you know I'm Anaemia, I have Fibromyagia, ME, CFS, #PCOS and also as I'm losing a lot of blood since the 7th of March so that doesn't help either this has been going on before the female issue hopefully when I get my next test done then I can hopefully get treatment done for the inside of my issues and hopefully get some proper treatment but you never know with the NHS in the UK. Then more test to find out if I have (bear with me as I can't spell this word so I spell it out how it sounds) endo-me-trio-sis . . B12 deficiency, I take high dosage of Vitamin D, I'm also on Calcium, Potassium, Iron and Magnesium tablets. And I'm waiting on an appointment regarding blood test and hopefully get vitamin b12 treatment again got for some reason it's really hard for me to get the doctor to prescribe me vitamin b12. . . #journeybattlesTP /#jbFightAgainstFibromyalgi .. . . #MillionsMissing -- #CanYouSeeMeNow .. #CFIDS -- #Fibro -- #CFS .. #ME .. #CFSme ..#fatigue .. #Anxiety .. #Anemic .. #depression ..#immunesystem ..#FibroIsReal .. #Chronicpain .. #redbloodcells .. #MuscleSpasms ... #eatingissues .. #rheumatoid .. #arthritis .. #fibrofog .. #spoonie .. #FlareUp .. #MyalgicEncephalomyelitis .. #invisibleillness ..#misunderstood - 6 hours ago

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When people ask why I wear comfortable clothes all the time. 
#myalgicencephalomyelitis #chronicallyfabulous #spoon #recharge #findacure #truth #timeforunrest #invisibleillness #butyoudontlooksick #brainfog #inspire #motivate #rmsf #lyme #awareness #invisibleillness #dontjudge #exhaustion #millionsmissing #mentalhealth #ptsd #survivor #warrior

When people ask why I wear comfortable clothes all the time. #myalgicencephalomyelitis #chronicallyfabulous #spoon #recharge #findacure #truth #timeforunrest #invisibleillness #butyoudontlooksick #brainfog #inspire #motivate #rmsf #lyme #awareness #invisibleillness #dontjudge #exhaustion #millionsmissing #mentalhealth #ptsd #survivor #warrior - 6 hours ago

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Show your support for OMF's #MayMomentum campaign! Add our special frame to your profile picture to help increase awareness of ME/CFS and raise funding to accelerate urgently needed biomedical research. #encefalomielitismialgica #sindromedefatigacronica #meaction #millonesausentes #noesfatiganoesvida #sfcem #noseVeseSiente #CIE_10_G93.3 #MillionsMissing https://www.facebook.com/309364692501292/posts/1957759624328449/

Show your support for OMF's #MayMomentum campaign! Add our special frame to your profile picture to help increase awareness of ME/CFS and raise funding to accelerate urgently needed biomedical research. #encefalomielitismialgica #sindromedefatigacronica #meaction #millonesausentes #noesfatiganoesvida #sfcem #noseVeseSiente #CIE_10_G93 .3 #MillionsMissing https://www.facebook.com/309364692501292/posts/1957759624328449/ - 8 hours ago

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Pitkästä aikaa, voinnin romahdus 😭😢😭 #millionsmissing #me #cfs #mecfs #exhausted #drained #outofenergy #powerof #chronicallyill

Pitkästä aikaa, voinnin romahdus #millionsmissing #me #cfs #mecfs #exhausted #drained #outofenergy #powerof #chronicallyill - 8 hours ago

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So, I'm still working on my gym photos, but I will definitely be feeling this work out. After 100 sit ups, 60 weighted squats, and a few other workouts, I feel myself getting closer to where I want to be. 
I was watching my favorite TV show last night and felt inspired by a quote from one of the characters. I felt like it applied well to my feelings for the #millionsmissing from ME/CSF. I'm angry by how poorly they are treated by those in the medical community. In mild cases, people lose 50% or more of their functionality, and moderate cases of ME/CSF cannot work and are mostly housebound. But I've seen countless stories from those who have been abused and neglected by doctors and nurses who treated them like they are crazy or faking. Can you imagine being perfectly healthy one day, and then getting sick the next, and never being able to return to your normal life. Then on top of that having everyone around you tell you that its "all in your head"? So yeah, I'm angry, and I want others to get angry with me. And then let's use that anger to make a difference! (Bonus points if you can name that TV show!) #workout4millions #millionsmissing #ablebodiedalliesforMECSF #myalgicencephalomyelitis

So, I'm still working on my gym photos, but I will definitely be feeling this work out. After 100 sit ups, 60 weighted squats, and a few other workouts, I feel myself getting closer to where I want to be. I was watching my favorite TV show last night and felt inspired by a quote from one of the characters. I felt like it applied well to my feelings for the #millionsmissing from ME/CSF. I'm angry by how poorly they are treated by those in the medical community. In mild cases, people lose 50% or more of their functionality, and moderate cases of ME/CSF cannot work and are mostly housebound. But I've seen countless stories from those who have been abused and neglected by doctors and nurses who treated them like they are crazy or faking. Can you imagine being perfectly healthy one day, and then getting sick the next, and never being able to return to your normal life. Then on top of that having everyone around you tell you that its "all in your head"? So yeah, I'm angry, and I want others to get angry with me. And then let's use that anger to make a difference! (Bonus points if you can name that TV show!) #workout4millions #millionsmissing #ablebodiedalliesforMECSF #myalgicencephalomyelitis - 8 hours ago

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Español: Estamos muy agradecidos del esfuerzo y apoyo para crear visibilidad y conciencia sobre la Encefalomielitis Miálgica Síndrome de Fatiga Crónica.
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English: We are very grateful for the effort and support to create visibility and awareness about Chronic Fatigue Symptoms of Myalgic Encephalomyelitis.
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@meactnet  @solve_cfs @openmedf  @millionsmissing @millionsmissingmexico @mmissinggermany
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#pwME #MyalgicE #MEawareness #ChronicLife #Advocacy #MECFS #CFS#Activism #Support #ChildrenWithME #MillionsMissing #PuertoRico #millionsmissingspeakout #meaction #chronicillness #EncefalomielitisMialgica #art #SindromedeFatigaCronica

Español: Estamos muy agradecidos del esfuerzo y apoyo para crear visibilidad y conciencia sobre la Encefalomielitis Miálgica Síndrome de Fatiga Crónica. ️ English: We are very grateful for the effort and support to create visibility and awareness about Chronic Fatigue Symptoms of Myalgic Encephalomyelitis. @meactnet @solve_cfs @openmedf @millionsmissing @millionsmissingmexico @mmissinggermany #pwME #MyalgicE #MEawareness #ChronicLife #Advocacy #MECFS #CFS #Activism #Support #ChildrenWithME #MillionsMissing #PuertoRico #millionsmissingspeakout #meaction #chronicillness #EncefalomielitisMialgica #art #SindromedeFatigaCronica - 9 hours ago

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Y’all.......I could cry. 3 years later and he’s FINALLY getting it. He’s gotten really good about picking up his leash for me with his favorite paracord tab but now he’s also finally learning to pick up other objects as well 😭 I’m so proud. Thank you endlessly to @sequeltothestory for being an actual dog whisperer and convincing Prince to do this 💗. Also peep our @thecoffeek9 harness 🙌🏻🙌🏻
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Follow our pack
@pipertheservicepup 
@atarisdit
@comehell.or.highwater 
@saltpixie
@kitaserviceamstaff
@amazing_aladdin
@wrad_fox
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#PrinceCharming #servicedogsofinstagram #rottweiler #rottweilersofinstagram #earlantonius #vonherrschaft #dog #dogsofinstagram #cute #love #mybaby #freylifedog #millionsmissing #dynamicduo #partnersincrime #ilovemyrottweiler #ilovemyservicedog #cutestdogofthedayaward

Y’all.......I could cry. 3 years later and he’s FINALLY getting it. He’s gotten really good about picking up his leash for me with his favorite paracord tab but now he’s also finally learning to pick up other objects as well I’m so proud. Thank you endlessly to @sequeltothestory for being an actual dog whisperer and convincing Prince to do this . Also peep our @thecoffeek9 harness 🏻🏻 • • • Follow our pack @pipertheservicepup @atarisdit @comehell.or.highwater @saltpixie @kitaserviceamstaff @amazing_aladdin @wrad_fox#PrinceCharming #servicedogsofinstagram #rottweiler #rottweilersofinstagram #earlantonius #vonherrschaft #dog #dogsofinstagram #cute #love #mybaby #freylifedog #millionsmissing #dynamicduo #partnersincrime #ilovemyrottweiler #ilovemyservicedog #cutestdogofthedayaward - 9 hours ago

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#chronicillnessandME Day 20: Words for someone newly diagnosed 💙✨I’m still in bed, brain pounding through my skull, can’t touch my scalp it’s that painful 😖 not the best day for advice giving but here we go... Hello newly diagnosed to the world of ME. It’s going to be one of the most challenging experiences you’ll ever have but don’t panic just yet. If you have found my corner of the Internet, then that means you have found the people you need and can trust. I’m not going to say it’s easy or give false hope, if you’re newly diagnosed with ME you’ll have been disappointed many times already. Just be aware that you are not alone in this. Know that even if the doctor tells you there’s no cure, things can still be done to help you cope a little better. Healing is possible but it’s not a straight line. It will have many ups and many downs. You’re going to learn more about yourself than ever before. You’re going to appreciate so much more. Times will be difficult and life will never be the same again but you have to hold onto everything you’ve got. Keep that hope alive, somehow. Never stop fighting for treatment and help, keep pushing. - challenge made by @spoonie_village 💕 #yourachingart #myalgicencephalomyelitis #meawareness #meawarenessmonth #myalgicE #chronicillnessawareness #invisibledisease #chronicfatiguesyndrome #canyouseemenow #meaction #millionsmissing #butyoudontlooksick #millionsmissingspeakout #chronicpain #chronicmigraines #anxiety #depression #spoonie #spoonielife #mayawarenessmonth

#chronicillnessandME Day 20: Words for someone newly diagnosed I’m still in bed, brain pounding through my skull, can’t touch my scalp it’s that painful not the best day for advice giving but here we go... Hello newly diagnosed to the world of ME. It’s going to be one of the most challenging experiences you’ll ever have but don’t panic just yet. If you have found my corner of the Internet, then that means you have found the people you need and can trust. I’m not going to say it’s easy or give false hope, if you’re newly diagnosed with ME you’ll have been disappointed many times already. Just be aware that you are not alone in this. Know that even if the doctor tells you there’s no cure, things can still be done to help you cope a little better. Healing is possible but it’s not a straight line. It will have many ups and many downs. You’re going to learn more about yourself than ever before. You’re going to appreciate so much more. Times will be difficult and life will never be the same again but you have to hold onto everything you’ve got. Keep that hope alive, somehow. Never stop fighting for treatment and help, keep pushing. - challenge made by @spoonie_village #yourachingart #myalgicencephalomyelitis #meawareness #meawarenessmonth #myalgicE #chronicillnessawareness #invisibledisease #chronicfatiguesyndrome #canyouseemenow #meaction #millionsmissing #butyoudontlooksick #millionsmissingspeakout #chronicpain #chronicmigraines #anxiety #depression #spoonie #spoonielife #mayawarenessmonth - 10 hours ago

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Director of the Neuro-inflammation, Pain and Fatigue Lab at UAB, researcher, and professor. Dr. Jarred Younger is a ME/CFS Warrior and he is fighting for you. ⁣⠀
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Dr. Younger’s research lab is located the University of Alabama at Birmingham. His team studies brain inflammation, aka nuero-inflammation. He has made significant findings in the field of ME/CFS. His team has found lactate in the brain, microglia activation, and increased brain temperature. His work is responsible for the popularity of Low Dose Naltrexone as a treatment for Fibromyalgia and ME/CFS. ⁣⠀
⁣⠀
He has achieved major accomplishments in his career. He has secured grants from the National Institutes of Health, a rarity in the field of ME/CFS. He has received the Ramsey award from Solve ME/CFS and well as funding from the Open Medicine Foundation. ⁣⠀
⁣⠀
Dr. Younger is active in the ME/CFS community. He gave a presentation at Emerge Conference in Australia. He is a part of Ron Davis’s End ME/CFS Project. Dr. Younger’s gave a fantastic presentation on neuro-inflammation at the Second Annual Community Symposium on the Molecular Basis of ME/CFS. Link to video in bio. He keeps connected with our community with his YouTube page, “Younger Lab”, which is full of great information.⁣⠀
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His research is ambitious and prolific. His goal is to end the chronic pain and fatigue that is caused by inflammation in the brain. He also studies Fibromyalgia, Rheumatoid Arthritis and Gulf War Illness. He holds the distinct honor of being my personal favorite researcher, but only by a hair. (There are so many to choose from! 💕👍😁) ⁣⠀
⁣⠀
Dr. Younger is a talented, massively skilled innovator who uses his considerable talents to increase our knowledge of this disease and find treatments. He is making a huge impact towards the advancement of our knowledge of this disease. In your own way, you have the power to make an impact on the realities of people with this disease as well. With people like Dr. Younger and all persons with ME, together we are stronger. Together we will win the fight for change. ⁣⠀
⁣⠀
Photo from solvecfs.org. Follow at @solve_cfs⠀
Second photo from @chronicallyhopefulblog

Director of the Neuro-inflammation, Pain and Fatigue Lab at UAB, researcher, and professor. Dr. Jarred Younger is a ME/CFS Warrior and he is fighting for you. ⁣⠀ ⁣⠀ Dr. Younger’s research lab is located the University of Alabama at Birmingham. His team studies brain inflammation, aka nuero-inflammation. He has made significant findings in the field of ME/CFS. His team has found lactate in the brain, microglia activation, and increased brain temperature. His work is responsible for the popularity of Low Dose Naltrexone as a treatment for Fibromyalgia and ME/CFS. ⁣⠀ ⁣⠀ He has achieved major accomplishments in his career. He has secured grants from the National Institutes of Health, a rarity in the field of ME/CFS. He has received the Ramsey award from Solve ME/CFS and well as funding from the Open Medicine Foundation. ⁣⠀ ⁣⠀ Dr. Younger is active in the ME/CFS community. He gave a presentation at Emerge Conference in Australia. He is a part of Ron Davis’s End ME/CFS Project. Dr. Younger’s gave a fantastic presentation on neuro-inflammation at the Second Annual Community Symposium on the Molecular Basis of ME/CFS. Link to video in bio. He keeps connected with our community with his YouTube page, “Younger Lab”, which is full of great information.⁣⠀ ⁣⠀ His research is ambitious and prolific. His goal is to end the chronic pain and fatigue that is caused by inflammation in the brain. He also studies Fibromyalgia, Rheumatoid Arthritis and Gulf War Illness. He holds the distinct honor of being my personal favorite researcher, but only by a hair. (There are so many to choose from! ) ⁣⠀ ⁣⠀ Dr. Younger is a talented, massively skilled innovator who uses his considerable talents to increase our knowledge of this disease and find treatments. He is making a huge impact towards the advancement of our knowledge of this disease. In your own way, you have the power to make an impact on the realities of people with this disease as well. With people like Dr. Younger and all persons with ME, together we are stronger. Together we will win the fight for change. ⁣⠀ ⁣⠀ Photo from solvecfs.org. Follow at @solve_cfs ⠀ Second photo from @chronicallyhopefulblog - 11 hours ago

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Advice for someone newly diagnosed...
Brutally, my first thought is ‘settle in’, this is a long haul unless you find some healing in the first two years which happens occasionally I’ve heard.
If you are an ME/CFS lifer (until we find a cure) then you have to find something that brings you life and do that because there will be plenty that would want to bring you down. Find joy and hang out there as often as possible.
I read somewhere that you need 10-20% of your energy left over to heal with as your body needs it to repair. If you take your battery all the way down to empty every day then you end up owing your body and it charges you interest in pain. Know your limit and play within it. Rest, rest, rest.
Don’t feel bad about enjoying the moments when you feel okay. Indeed relish them.
Don’t worry about trying to convince other people you’re sick just do what you’ve got to do and listen to your body. 
Find the things that you can do now and take the time you need to mourn what you can’t do any longer. Your heart will appreciate the attention and the compassion. Be kind to yourself.
Be kind to your friends and family. You’re really going to need them.
Be kind to your doctor and help them learn with you. They have had no training in this illness so how can we expect them to have any clue on something that they have little to no knowledge about. Let’s help them to learn and work together.

#chronicillnessandme #mecfsawarenessmonth #mecfs #spoonielife #chronicallyawesome #millionsmissing #millionsmissingcanada

Advice for someone newly diagnosed... Brutally, my first thought is ‘settle in’, this is a long haul unless you find some healing in the first two years which happens occasionally I’ve heard. If you are an ME/CFS lifer (until we find a cure) then you have to find something that brings you life and do that because there will be plenty that would want to bring you down. Find joy and hang out there as often as possible. I read somewhere that you need 10-20% of your energy left over to heal with as your body needs it to repair. If you take your battery all the way down to empty every day then you end up owing your body and it charges you interest in pain. Know your limit and play within it. Rest, rest, rest. Don’t feel bad about enjoying the moments when you feel okay. Indeed relish them. Don’t worry about trying to convince other people you’re sick just do what you’ve got to do and listen to your body. Find the things that you can do now and take the time you need to mourn what you can’t do any longer. Your heart will appreciate the attention and the compassion. Be kind to yourself. Be kind to your friends and family. You’re really going to need them. Be kind to your doctor and help them learn with you. They have had no training in this illness so how can we expect them to have any clue on something that they have little to no knowledge about. Let’s help them to learn and work together. #chronicillnessandme #mecfsawarenessmonth #mecfs #spoonielife #chronicallyawesome #millionsmissing #millionsmissingcanada - 11 hours ago

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We are strong because we still show up! Even just in the little things! Sending love to you all! You’re all so strong and brave 💖

We are strong because we still show up! Even just in the little things! Sending love to you all! You’re all so strong and brave - 11 hours ago

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Ik krijg tegenwoordig veel lieve berichtjes. Over hoe mensen het zo sterk vinden dat ik positief blijf. Dat ik eerlijk dingen toon maar blijf vechten. En dat vind ik lief. Maar soms geef ik ook een beetje op. Zoals vandaag. Ik heb het de laatste weken ondanks kleine succesjes moeilijk. Ik voel mijn lichaam korreltje bij korreltje wegglippen ondanks dat ik alles juist doe. En het frustreert me want ik heb het gevoel dat ik mezelf compleet aan het verliezen ben. Dus vandaag zei ik de kine af, ik kroop terug in bed en heb zogoed als een hele dag geslapen. Ik stopte niet met vechten, maar zette het even op hold, en soms moet dat maar even. Ik weet dat ik hier niet alleen in ben, dat kleine tegenslagen soms zo overdonderend kunnen voelen. En daarom start ik ‘Moody Monday’ & ‘Freaky Friday’ vanaf nu! Elke maandag mag je in mijn story’s je hartje luchten. En elke vrijdag wil ik dat je jezelf becomplimenteerd op wat je deed. Niemand is hier alleen in, en ik wil van mijn blog een veilig plekje maken waar iedereen dat weet. Je bent welkom hier, verdrietig of blij, altijd🌻
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🇬🇧I received many sweet messages lately. About how people find it so strong that I remain positive. That I show things honestly but keep fighting. And I think that's sweet. But sometimes I also give up. Like today. Despite small successes I have had a hard time the last couple of weeks. I feel I’m losing my body grainy by grain even though I do everything right. And it frustrates me because I feel like I’m completely losing myself. So today I canceled physio, I got back in bed and slept almost a whole day. I didn’t stop fighting, I took a break, and sometimes I just have to. I know that I’m not alone in this, that small setbacks can sometimes feel so overwhelming. And that's why I'm starting ‘Moody Monday’ & ‘Freaky Friday’! Every Monday you can clear your chest in my stories. And every Friday I want you to compliment yourself on what you did. Nobody is alone in this, and I want to make my blog a safe place where everyone knows that. You are welcome here, sad or happy, always🌻 #astormunderneath #spoonie #chronicillness #chronischziek  #chronicpain #chronischepijn #moodymonday #freakyfriday

Ik krijg tegenwoordig veel lieve berichtjes. Over hoe mensen het zo sterk vinden dat ik positief blijf. Dat ik eerlijk dingen toon maar blijf vechten. En dat vind ik lief. Maar soms geef ik ook een beetje op. Zoals vandaag. Ik heb het de laatste weken ondanks kleine succesjes moeilijk. Ik voel mijn lichaam korreltje bij korreltje wegglippen ondanks dat ik alles juist doe. En het frustreert me want ik heb het gevoel dat ik mezelf compleet aan het verliezen ben. Dus vandaag zei ik de kine af, ik kroop terug in bed en heb zogoed als een hele dag geslapen. Ik stopte niet met vechten, maar zette het even op hold, en soms moet dat maar even. Ik weet dat ik hier niet alleen in ben, dat kleine tegenslagen soms zo overdonderend kunnen voelen. En daarom start ik ‘Moody Monday’ & ‘Freaky Friday’ vanaf nu! Elke maandag mag je in mijn story’s je hartje luchten. En elke vrijdag wil ik dat je jezelf becomplimenteerd op wat je deed. Niemand is hier alleen in, en ik wil van mijn blog een veilig plekje maken waar iedereen dat weet. Je bent welkom hier, verdrietig of blij, altijdI received many sweet messages lately. About how people find it so strong that I remain positive. That I show things honestly but keep fighting. And I think that's sweet. But sometimes I also give up. Like today. Despite small successes I have had a hard time the last couple of weeks. I feel I’m losing my body grainy by grain even though I do everything right. And it frustrates me because I feel like I’m completely losing myself. So today I canceled physio, I got back in bed and slept almost a whole day. I didn’t stop fighting, I took a break, and sometimes I just have to. I know that I’m not alone in this, that small setbacks can sometimes feel so overwhelming. And that's why I'm starting ‘Moody Monday’ & ‘Freaky Friday’! Every Monday you can clear your chest in my stories. And every Friday I want you to compliment yourself on what you did. Nobody is alone in this, and I want to make my blog a safe place where everyone knows that. You are welcome here, sad or happy, always #astormunderneath #spoonie #chronicillness #chronischziek #chronicpain #chronischepijn #moodymonday #freakyfriday - 11 hours ago

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This rings so true. The amazing @jen.brea , director of #Unrest the film (see it on #Netflix if you haven't, it really is important), on what it feels like to feel *better* after 8 years bedbound and abandoned by the majority of the medical community (or rather, is it ever possible to be "better" having gone through something in itself so traumatic).Reading the stories of others is just so important in not feeling completely alone. I recently have been wondering why I post about being ill, but if Jennifer had just thought "why bother, people will think I'm just attention seeking"  then I would never have heard her story and I would be poorer and more alone for that. I love my #chronicillness family ❤🧡💛💚💙💜🖤
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First panel is screenshot of Jennifer's facebook post "For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission: 
https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71"

Second panel is an excerpt from that article:  I also feel like I’ve just come back from a war, and it’s left scars I didn’t know were there. This experience has changed me forever, in good ways and in hard ways. Now that I finally have the space and health to truly feel what any normal human might feel about the last eight years, I sometimes wish I didn’t. The grief and trauma over what this illness has destroyed has come rushing in, for me and for Omar; the meaning of the time that we will never get back."
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#millionsmissing #mecfs #myalgicencephalomyelitis (similar impact in some ways but not the same as #idiopathichypersomnia #ih which is my #hiddendisability #hiddenillness ) #disability #spoonie #disabled #hiddendisability #unhidden

This rings so true. The amazing @jen.brea , director of #Unrest the film (see it on #Netflix if you haven't, it really is important), on what it feels like to feel *better* after 8 years bedbound and abandoned by the majority of the medical community (or rather, is it ever possible to be "better" having gone through something in itself so traumatic).Reading the stories of others is just so important in not feeling completely alone. I recently have been wondering why I post about being ill, but if Jennifer had just thought "why bother, people will think I'm just attention seeking" then I would never have heard her story and I would be poorer and more alone for that. I love my #chronicillness family 🧡🖤 . . . First panel is screenshot of Jennifer's facebook post "For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission: https://medium.com/@jenbrea /health-update-3-my-me-is-in-remission-dd575e650f71" Second panel is an excerpt from that article:  I also feel like I’ve just come back from a war, and it’s left scars I didn’t know were there. This experience has changed me forever, in good ways and in hard ways. Now that I finally have the space and health to truly feel what any normal human might feel about the last eight years, I sometimes wish I didn’t. The grief and trauma over what this illness has destroyed has come rushing in, for me and for Omar; the meaning of the time that we will never get back." . . . #millionsmissing #mecfs #myalgicencephalomyelitis (similar impact in some ways but not the same as #idiopathichypersomnia #ih which is my #hiddendisability #hiddenillness ) #disability #spoonie #disabled #hiddendisability #unhidden - 12 hours ago

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Hope your all doing the best you can be! I’ve been a bit out of touch on here lately with health up and down as usual. Hoping to be more active on here 🌟 --------------------------------
#me #cfs #mecfs #cfsme #myalgicencephalomyelitis #chronicillness #chronicillnesses #chronicfatiguesyndrome #millionsmissing #millionsmissinguk #uk #awareness #invisibleillness #invisibleillnesses #spoonie #spoonies #aspoonieslife #invisibleillnessawareness #brainfog #butyoudontlooksick #spooniestruggle #chiarimalformation #chiari1malformation #chiari1 #chiari

Hope your all doing the best you can be! I’ve been a bit out of touch on here lately with health up and down as usual. Hoping to be more active on here -------------------------------- #me #cfs #mecfs #cfsme #myalgicencephalomyelitis #chronicillness #chronicillnesses #chronicfatiguesyndrome #millionsmissing #millionsmissinguk #uk #awareness #invisibleillness #invisibleillnesses #spoonie #spoonies #aspoonieslife #invisibleillnessawareness #brainfog #butyoudontlooksick #spooniestruggle #chiarimalformation #chiari1malformation #chiari1 #chiari - 12 hours ago

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#me #cfs #millionsmissing #brother #love #hope #blue #rose #life #niemalsaufgeben #jensspahn

#me #cfs #millionsmissing #brother #love #hope #blue #rose #life #niemalsaufgeben #jensspahn - 12 hours ago

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So tired today! 😴😴
(Little blog below!)
Got a new bed a few weeks ago from Benson's, and I wanted one with memory foam for comfort (like I did last time!) HOWEVER....it was awful! The "memory foam" was stitched on separately on top of the mattress, and it felt nothing like proper memory foam! Just felt like sponge. It wasn't dense at all. Within 2 weeks I had a big dent where my body went, and I couldn't even lie on my stomach, as I had zero support! Started waking up with bad backache again, so it really wasn't good with my fibro. 
The other issue was that it was an extra deep mattress (I chose online, and hubby went in to buy it btw). I had no idea when I bought it, that the bed was super high, and awful for someone with chronic illnesses to get into (hubby didn't notice as he's really tall!) I was having to use a step stool to get into the damn thing! 🙈
Anyhoo, I got the bed exchanged and now have a lovely Silentnight mattress, and tbh I think the divan is better quality too. I paid a fortune for the last one that was junk, and this one is slightly cheaper, branded, and easy to get into! Fingers crossed I have more success this time 🤞
A bed is everything to a spoonie. Especially as I spend most of my day in mine!

So tired today! 😴😴 (Little blog below!) Got a new bed a few weeks ago from Benson's, and I wanted one with memory foam for comfort (like I did last time!) HOWEVER....it was awful! The "memory foam" was stitched on separately on top of the mattress, and it felt nothing like proper memory foam! Just felt like sponge. It wasn't dense at all. Within 2 weeks I had a big dent where my body went, and I couldn't even lie on my stomach, as I had zero support! Started waking up with bad backache again, so it really wasn't good with my fibro. The other issue was that it was an extra deep mattress (I chose online, and hubby went in to buy it btw). I had no idea when I bought it, that the bed was super high, and awful for someone with chronic illnesses to get into (hubby didn't notice as he's really tall!) I was having to use a step stool to get into the damn thing! Anyhoo, I got the bed exchanged and now have a lovely Silentnight mattress, and tbh I think the divan is better quality too. I paid a fortune for the last one that was junk, and this one is slightly cheaper, branded, and easy to get into! Fingers crossed I have more success this time 🤞 A bed is everything to a spoonie. Especially as I spend most of my day in mine! - 12 hours ago

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It’s difficult to know what to post from my first trip abroad, everything was so beautiful and I’ve got so many photos. Well either way, enjoy this shot #gondala #venice #italy #travel #travelphotography #me #millionsmissing #opensea

It’s difficult to know what to post from my first trip abroad, everything was so beautiful and I’ve got so many photos. Well either way, enjoy this shot #gondala #venice #italy #travel #travelphotography #me #millionsmissing #opensea - 12 hours ago

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#prosecco #sorbet on the #venician #sea #italy #boattrip #murano #burano #bliss #me #millionsmissing

#prosecco #sorbet on the #venician #sea #italy #boattrip #murano #burano #bliss #me #millionsmissing - 13 hours ago

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You deserve to have people to do the parts you can’t.⠀
⠀
Wow oh wow what an eye opening perspective that I wasn’t expecting to find at school. Everyone has strengths and weaknesses, and we are no different. Focusing on my strengths has helped me to let go and let my talented classmates do the parts I physically can’t do. I have finished the semester with a beautiful project and WITHOUT a set back (Which is how it should be). ⠀
⠀
It’s just a matter of letting go, letting others, and letting God.

#millionsmissing #meaction #invisible #invisibleillness #invisibleillnessawareness #chronic #chronicfatiguesyndrome #chronicillness #chronicpain #cfs #mecfs #crash #burntout #hope #change #inspiration #tired #fatigue #migraine #visiontherapy #vision #eyepain #headpain #backpain #fibro #musclepain

You deserve to have people to do the parts you can’t.⠀ ⠀ Wow oh wow what an eye opening perspective that I wasn’t expecting to find at school. Everyone has strengths and weaknesses, and we are no different. Focusing on my strengths has helped me to let go and let my talented classmates do the parts I physically can’t do. I have finished the semester with a beautiful project and WITHOUT a set back (Which is how it should be). ⠀ ⠀ It’s just a matter of letting go, letting others, and letting God. #millionsmissing #meaction #invisible #invisibleillness #invisibleillnessawareness #chronic #chronicfatiguesyndrome #chronicillness #chronicpain #cfs #mecfs #crash #burntout #hope #change #inspiration #tired #fatigue #migraine #visiontherapy #vision #eyepain #headpain #backpain #fibro #musclepain - 13 hours ago

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8pm - Monday 20th May 2019

My ready steady Cook blender is mine all-time favorite blender for helping me to eat on days that I've got swallowing issues called #Dysphagia
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#journeybattlesTP/#jbFightAgainstFibromyalgi ..
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#MillionsMissing -- #CanYouSeeMeNow .. #CFIDS -- #Fibro -- #CFS .. #ME .. #CFSme ..#fatigue .. #Anxiety .. #Anemic .. #depression ..#immunesystem .. #CentralNervousSystem ..#FibroIsReal .. #Chronicpain .. #osteoarthritis.. #MuscleSpasms ... #eatingissues .. #rheumatoid.. #arthritis .. #fibrofog .. #spoonie .. #grieving .. #FlareUp .. #MyalgicEncephalomyelitis .. #invisibleillness ..#misunderstood

8pm - Monday 20th May 2019 My ready steady Cook blender is mine all-time favorite blender for helping me to eat on days that I've got swallowing issues called #Dysphagia . . #journeybattlesTP /#jbFightAgainstFibromyalgi .. . . #MillionsMissing -- #CanYouSeeMeNow .. #CFIDS -- #Fibro -- #CFS .. #ME .. #CFSme ..#fatigue .. #Anxiety .. #Anemic .. #depression ..#immunesystem .. #CentralNervousSystem ..#FibroIsReal .. #Chronicpain .. #osteoarthritis .. #MuscleSpasms ... #eatingissues .. #rheumatoid .. #arthritis .. #fibrofog .. #spoonie .. #grieving .. #FlareUp .. #MyalgicEncephalomyelitis .. #invisibleillness ..#misunderstood - 13 hours ago

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The speed my brain is processing today. 
#brainfog #exhaustion #millionsmissing #mentalhealth #ptsd #stress #treatment #triggered #myalgicencephalomyelitis #cfsme #autoimmunewarrior #autoimmunedisease #butyoudontlooksick #notjusttired #recovery #rockymountainspottedfever #lyme #awareness #invisibleillness #dontjudge #spoon #recharge #findacure #macintosh #og

The speed my brain is processing today. #brainfog #exhaustion #millionsmissing #mentalhealth #ptsd #stress #treatment #triggered #myalgicencephalomyelitis #cfsme #autoimmunewarrior #autoimmunedisease #butyoudontlooksick #notjusttired #recovery #rockymountainspottedfever #lyme #awareness #invisibleillness #dontjudge #spoon #recharge #findacure #macintosh #og - 13 hours ago

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#missiontoremission #thymectomy #myastheniagravis #wearemg #postop #incurable #invisibleillness #chronicillness #rarediseases #sphincterofoddidysfunction #chronicpancreatitis #cvid #hashimotosdisease #degenerativediscdisease #tarlovcystdisease #cholesterolgranuloma #cfsme #millionsmissing #lymedisease #hope

#missiontoremission #thymectomy #myastheniagravis #wearemg #postop #incurable #invisibleillness #chronicillness #rarediseases #sphincterofoddidysfunction #chronicpancreatitis #cvid #hashimotosdisease #degenerativediscdisease #tarlovcystdisease #cholesterolgranuloma #cfsme #millionsmissing #lymedisease #hope - 14 hours ago

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#encefalomielitismialgica #sindromedefatigacronica #millonesdeausentes #sfcem #noesfatiganoesvida #meaction #noseVeseSiente #CIE10_G_93_3 #millionsmissing

#encefalomielitismialgica #sindromedefatigacronica #millonesdeausentes #sfcem #noesfatiganoesvida #meaction #noseVeseSiente #CIE10_G_93_3 #millionsmissing - 14 hours ago

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Day 20 of @spoonie_village #dailyphotochallenge #ChronicIllnessAndMe to raise MECFS Awareness. Today’s Prompt: Words for someone newly #diagnosed
📝
Hmmm I think I’d share with someone newly diagnosed to: •Pace your output - this is moment to moment pacing because complete energy fall out can come at any moment. Sometimes loss of energy is traceable to something, sometimes it’s not. Listen to your body and if at all possible, don’t keep pushing. And if you’re like me, which most of us seem to be, and there’s no quit in you, get a heart rate monitor. This will help you stay in a healthier zone ( #energy envelope) which will help you avoid #BoomAndBust and having your health further decline. •Try to find at least one #HealthCareProfessional who is supportive of you and respects that you know your body better than anyone. These doctors are kind of like unicorns 😉 but they’re out there. •Know there will be really bad days, but don’t give up, please! If you need a shoulder I’m a message away. Feelings pass, ride them out, but also reach out if you need to. Social media is just like anywhere else, there are well intending people and ruthless people...surround yourself with those that lift you up, there will be days you’ll need that. •Try to find a new hobby, creativity feeds the soul. •Remember, at this point there’s no proven cure, watch your pocketbook for those taking advantage of chronically ill people. 
I’m sorry you’re on this journey 💙
————————
#MillionsMissing #MillionsMissingSanDiego #MillionsMissingSpeakOut #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #MECFS #FindACure #ChronicIllness #unchargeables #MayMomentum #OpenMedicineFoundation #OMF #PWME #BHC #BatemanHorneCenter #Fibromyalgia #MEAction #togetherwearestronger

Day 20 of @spoonie_village #dailyphotochallenge #ChronicIllnessAndMe to raise MECFS Awareness. Today’s Prompt: Words for someone newly #diagnosed Hmmm I think I’d share with someone newly diagnosed to: •Pace your output - this is moment to moment pacing because complete energy fall out can come at any moment. Sometimes loss of energy is traceable to something, sometimes it’s not. Listen to your body and if at all possible, don’t keep pushing. And if you’re like me, which most of us seem to be, and there’s no quit in you, get a heart rate monitor. This will help you stay in a healthier zone ( #energy envelope) which will help you avoid #BoomAndBust and having your health further decline. •Try to find at least one #HealthCareProfessional who is supportive of you and respects that you know your body better than anyone. These doctors are kind of like unicorns but they’re out there. •Know there will be really bad days, but don’t give up, please! If you need a shoulder I’m a message away. Feelings pass, ride them out, but also reach out if you need to. Social media is just like anywhere else, there are well intending people and ruthless people...surround yourself with those that lift you up, there will be days you’ll need that. •Try to find a new hobby, creativity feeds the soul. •Remember, at this point there’s no proven cure, watch your pocketbook for those taking advantage of chronically ill people. I’m sorry you’re on this journey ———————— #MillionsMissing #MillionsMissingSanDiego #MillionsMissingSpeakOut #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #MECFS #FindACure #ChronicIllness #unchargeables #MayMomentum #OpenMedicineFoundation #OMF #PWME #BHC #BatemanHorneCenter #Fibromyalgia #MEAction #togetherwearestronger - 15 hours ago

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Some quiet time this Monday night
🌼
It’s been such a rough year this year in so many ways - I think probably some #selfcare is due
🌼
I’m trying to remind myself that I’m doing at the best I can - that on the tough days - I am allowed to rest and that I can’t do everything - no matter how much I want to
🌼

Some quiet time this Monday night It’s been such a rough year this year in so many ways - I think probably some #selfcare is due I’m trying to remind myself that I’m doing at the best I can - that on the tough days - I am allowed to rest and that I can’t do everything - no matter how much I want to - 15 hours ago

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ik wacht mee.. Els.

#ikwachtmee @ikwachtmee

Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden.
Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be 💙👊✊ #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els. #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt

ik wacht mee.. Els. #ikwachtmee @ikwachtmee Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden. Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els . #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt - 15 hours ago

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ik wacht mee.. Els.

#ikwachtmee @ikwachtmee

Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden.
Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be 💙👊✊ #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els. #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt

ik wacht mee.. Els. #ikwachtmee @ikwachtmee Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden. Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els . #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt - 15 hours ago

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ik wacht mee.. Els.

#ikwachtmee @ikwachtmee

Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden.
Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be 💙👊✊ #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els. #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt

ik wacht mee.. Els. #ikwachtmee @ikwachtmee Er zijn ontzettend veel mensen die wachten op betere zorg en ondersteuning. Ze wachten allemaal op hulp van de overheid. Hoog tijd om die alarmbellen te laten luiden. Wacht jij mee met ons? Maak een foto van je rug, deel ze op Instagram en tag @ikwachtmee in je foto. Zo sta je mee in de wachtrijen op www.ikwachtmee.be #meawareness #millionsmissing #me #fibromyalgie #cvs #youdontlooksick #chronicillness #chronischepijn #samenstaanwesterk #Els . #Elsphoto #Elsart #Elsmacro #Elsdesign #Elslookaround #ElsWielandt - 15 hours ago

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This is the reality of an invisible illness. Two days apart.  I had to rest for days just to wash my hair and then plait it wet coz i cant hold the blow dryer anymore for long. I love make up.  I hate this illness 
#myalgicencephalomyelitis #millionsmissing #pwme #chronicillness #chronicpain #chronicwarrior #chronicfatiguesyndrome #invisibleillness #cfsme #chronicmigraine #spoonielife #nospoonsleft #spoonie #disabledandcute #makeup #pretenditdoesnthurt #wherethetiredgirlsare #tiredgirlsociety #fatigue

This is the reality of an invisible illness. Two days apart. I had to rest for days just to wash my hair and then plait it wet coz i cant hold the blow dryer anymore for long. I love make up. I hate this illness #myalgicencephalomyelitis #millionsmissing #pwme #chronicillness #chronicpain #chronicwarrior #chronicfatiguesyndrome #invisibleillness #cfsme #chronicmigraine #spoonielife #nospoonsleft #spoonie #disabledandcute #makeup #pretenditdoesnthurt #wherethetiredgirlsare #tiredgirlsociety #fatigue - 15 hours ago

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100%! The more I try to fight my illness, the worse I get. Every time.

100%! The more I try to fight my illness, the worse I get. Every time. - 15 hours ago

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Early evening in the early summer can be such a lovely time of the year. I’m sitting out in my mom’s back garden just enjoying the evening air and sound of the birds tweeting around me. It’s so clam and peaceful out here. I spent most of the day inside helping clean out the house, as some redecorating is about to happen and when I feel I can help, I should. Though it wasn’t too much effort and I did most things sitting down, due to feeling exhausted after my chronic pelvic pain kept me awake for hours last night, I need a bit of quite me time. Mom’s out for the evening, and though I love my little apartment, I don’t have my own garden. ( yet, I will when I move in a few weeks!) It’s so lovely to just sit on the grass and enjoy nature and the world go by, and the odd rev from a motorcycle...just what I needed tonight. 🌲 #chronicillnesswarrior #chronicpainwarrior #chronicheadpain #chronicbackpain #chronicpelvicpainsyndrome #pelvicpainsucks #chronicfatiguesyndrome #myalgicencephalomyelitis #pwcfs #pwme #cfsme #mecfs #fibromyalgia #peoplewithfibromyalgia #spoonielife #millionsmissing #peaceful #gardensofinstagram #peaceandquiet #mytime

Early evening in the early summer can be such a lovely time of the year. I’m sitting out in my mom’s back garden just enjoying the evening air and sound of the birds tweeting around me. It’s so clam and peaceful out here. I spent most of the day inside helping clean out the house, as some redecorating is about to happen and when I feel I can help, I should. Though it wasn’t too much effort and I did most things sitting down, due to feeling exhausted after my chronic pelvic pain kept me awake for hours last night, I need a bit of quite me time. Mom’s out for the evening, and though I love my little apartment, I don’t have my own garden. ( yet, I will when I move in a few weeks!) It’s so lovely to just sit on the grass and enjoy nature and the world go by, and the odd rev from a motorcycle...just what I needed tonight. 🌲 #chronicillnesswarrior #chronicpainwarrior #chronicheadpain #chronicbackpain #chronicpelvicpainsyndrome #pelvicpainsucks #chronicfatiguesyndrome #myalgicencephalomyelitis #pwcfs #pwme #cfsme #mecfs #fibromyalgia #peoplewithfibromyalgia #spoonielife #millionsmissing #peaceful #gardensofinstagram #peaceandquiet #mytime - 16 hours ago

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I’m hardcore resting, but it’s not going great just yet. Moments ago, I was sitting up on my bed, instead of reclining, and I almost fainted. AGAIN!!! That’s twice in a few days. 🙄 UGH! But then Alex picked me some fresh blueberries from our bush out front and it made my tastebuds and my soul happy. Nothing is better than fresh picked food! Yum!!! Maybe I’ll be able to sit up again later, but I’ll allow blueberries to distract me for now! ❤️ .
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#MillionsMissing #weareMEactionGA #pwme #myalgicencephalomyelitis #mecfs #mecfslife #spoonie #spoonielife #dysautonomia #pots #postorthostatictachycardiasyndrome #salinelife #faintingsucks #blueberries #freshfruit #frontyardgarden #ediblelandscaping #itsthelittlethings

I’m hardcore resting, but it’s not going great just yet. Moments ago, I was sitting up on my bed, instead of reclining, and I almost fainted. AGAIN!!! That’s twice in a few days. 🙄 UGH! But then Alex picked me some fresh blueberries from our bush out front and it made my tastebuds and my soul happy. Nothing is better than fresh picked food! Yum!!! Maybe I’ll be able to sit up again later, but I’ll allow blueberries to distract me for now! ️ . . . . . . #MillionsMissing #weareMEactionGA #pwme #myalgicencephalomyelitis #mecfs #mecfslife #spoonie #spoonielife #dysautonomia #pots #postorthostatictachycardiasyndrome #salinelife #faintingsucks #blueberries #freshfruit #frontyardgarden #ediblelandscaping #itsthelittlethings - 16 hours ago

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🌱 when my body starts sending me signals that I’m pushing it too hard, I return to less encumbered earth and try to listen for what’s next. It worked! Three days in the north cascades has got me ready for the festivities of next weekend. Saturday 5/25 at Ballard homestead 7pm I will be opening the night for @wolfchildmusic and @rainbowgirlsband . I think it will be a therapeutic night of music in the midst of these trying weeks in which so many womxn are not feeling safe. Then Sunday 5/26 at 3pm I will be playing at @nwfolklife at the vera project stage and I am really honored to be joining folklife again, an affordable (by donation) festival celebrating people power. 🌱.
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#pnwonderland #northcascadesnationalpark #ferns #musician #music #lymediseaseawarenessmonth #lymedisease #mecfs #millionsmissing

when my body starts sending me signals that I’m pushing it too hard, I return to less encumbered earth and try to listen for what’s next. It worked! Three days in the north cascades has got me ready for the festivities of next weekend. Saturday 5/25 at Ballard homestead 7pm I will be opening the night for @wolfchildmusic and @rainbowgirlsband . I think it will be a therapeutic night of music in the midst of these trying weeks in which so many womxn are not feeling safe. Then Sunday 5/26 at 3pm I will be playing at @nwfolklife at the vera project stage and I am really honored to be joining folklife again, an affordable (by donation) festival celebrating people power. . . . #pnwonderland #northcascadesnationalpark #ferns #musician #music #lymediseaseawarenessmonth #lymedisease #mecfs #millionsmissing - 16 hours ago

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I’M INSPIRED BY... this post is dedicated to my beautiful friend @lungsandroses 💜 To live each day with lungs that were as crappy as yours and still laugh as loud and as much as you did was so incredible. To be able to have the strength to not let your illness stop you from living life how you wanted left so many people in awe of you.💜Emily - you left me breathless and speechless on so many occasions, you were a one in a million and now you’re sparkling bright in the sky - you shouldn’t be there. I’m sorry that things didn’t work out - you deserved a whole lot more.💜 You taught me a lot, especially about how I want to be now I am ill. You never got to meet ‘sick me’ but I hope when I get this ‘under control’ I’ll do you proud - you’ve shown me who I want to be when I’m strong enough. Thank you for everything. I will miss you always - may you rest in peace, my beautiful friend. #cysticfibrosis #cf #cfawareness #meawareness #spoonies #chronicpainsucks #chroniclife #spooniesupport #migraine  #chronicpainwarrior #chronicillness #chronicfatiguesyndrome #cfsme #meassociation #worklifebalance #invisibleillnessawareness #work #quote #millionsmissing #invisible #illness #chronicillnessandme #selfawareness #medical #pwme #meawarenessweek #restday #selfcare #restinpeace

I’M INSPIRED BY... this post is dedicated to my beautiful friend @lungsandroses To live each day with lungs that were as crappy as yours and still laugh as loud and as much as you did was so incredible. To be able to have the strength to not let your illness stop you from living life how you wanted left so many people in awe of you.Emily - you left me breathless and speechless on so many occasions, you were a one in a million and now you’re sparkling bright in the sky - you shouldn’t be there. I’m sorry that things didn’t work out - you deserved a whole lot more. You taught me a lot, especially about how I want to be now I am ill. You never got to meet ‘sick me’ but I hope when I get this ‘under control’ I’ll do you proud - you’ve shown me who I want to be when I’m strong enough. Thank you for everything. I will miss you always - may you rest in peace, my beautiful friend. #cysticfibrosis #cf #cfawareness #meawareness #spoonies #chronicpainsucks #chroniclife #spooniesupport #migraine #chronicpainwarrior #chronicillness #chronicfatiguesyndrome #cfsme #meassociation #worklifebalance #invisibleillnessawareness #work #quote #millionsmissing #invisible #illness #chronicillnessandme #selfawareness #medical #pwme #meawarenessweek #restday #selfcare #restinpeace - 16 hours ago

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The hero’s journey. ⁣
⁣
This is the formative template for all great stories. ⁣
⁣
Think Luke Skywalker or Harry Potter. ⁣
⁣
To briefly summarize: it follows a character’s journey from weakness into strength.⁣
⁣
Who doesn’t like that? ⁣
⁣
All of us want to rise to the challenge and become the best at something, glorifying Olympians, artists, and billionaires alike. ⁣
⁣
Seeking to be just like them.⁣
⁣
Strong. Successful. Flawless.⁣ ⁣

As a teenager I craved both success and recognition, my worth solely determined on placings in competitions and how well I stood academically. ⁣
⁣
Growing up, I delighted in my athletic and intellectual abilities, but as my health declined so did these other areas of my life. ⁣
⁣
One of the most agonizing moments of my life was WAKING UP WEAK WHEN I USED TO BE STRONG. ⁣
⁣
Back surgery was the most horrifying experience of my life. I couldn’t comprehend how I was still alive while bearing such extreme pain.⁣
⁣
Then came time to relearn how to walk.⁣
⁣
With chattering teeth and two nurses to assist me, I struggled to get my feet. Entering the hallway with a provided walker I immediately felt ashamed. ⁣
⁣
As someone who outran other competitors in track meets, this moment seemed pathetic. I felt like a loser.⁣
⁣
Harsh, right? ⁣
⁣
I was relearning how to walk again after spinal surgery.⁣
⁣
I wasn’t a loser. I was an effing warrior! The bruises and scars on my body proof of the battle I waged.⁣
⁣
One breath at a time, I would survive this moment. ⁣
⁣
Literally grunting, “It’s gonna be ok,” under my breath as I hobbled forward sharpened my focus on the present moment.⁣ ⁣

There’s something admirable about showing up, gritting your teeth, and braving the difficult even when every cell in your body is shrieking at you to run and hide from the world. Even when you are less than perfect.⁣
⁣
Maybe you’re feeling mentally, emotionally, and/or physically weak right now and that’s ok. ⁣
⁣
I know your spirit is resilient. ⁣
⁣
From my experience the true hero’s journey is not the transition from weakness into strength, but rather strength into weakness.⁣
⁣
It’s gonna be ok.

The hero’s journey. ⁣ ⁣ This is the formative template for all great stories. ⁣ ⁣ Think Luke Skywalker or Harry Potter. ⁣ ⁣ To briefly summarize: it follows a character’s journey from weakness into strength.⁣ ⁣ Who doesn’t like that? ⁣ ⁣ All of us want to rise to the challenge and become the best at something, glorifying Olympians, artists, and billionaires alike. ⁣ ⁣ Seeking to be just like them.⁣ ⁣ Strong. Successful. Flawless.⁣ ⁣ As a teenager I craved both success and recognition, my worth solely determined on placings in competitions and how well I stood academically. ⁣ ⁣ Growing up, I delighted in my athletic and intellectual abilities, but as my health declined so did these other areas of my life. ⁣ ⁣ One of the most agonizing moments of my life was WAKING UP WEAK WHEN I USED TO BE STRONG. ⁣ ⁣ Back surgery was the most horrifying experience of my life. I couldn’t comprehend how I was still alive while bearing such extreme pain.⁣ ⁣ Then came time to relearn how to walk.⁣ ⁣ With chattering teeth and two nurses to assist me, I struggled to get my feet. Entering the hallway with a provided walker I immediately felt ashamed. ⁣ ⁣ As someone who outran other competitors in track meets, this moment seemed pathetic. I felt like a loser.⁣ ⁣ Harsh, right? ⁣ ⁣ I was relearning how to walk again after spinal surgery.⁣ ⁣ I wasn’t a loser. I was an effing warrior! The bruises and scars on my body proof of the battle I waged.⁣ ⁣ One breath at a time, I would survive this moment. ⁣ ⁣ Literally grunting, “It’s gonna be ok,” under my breath as I hobbled forward sharpened my focus on the present moment.⁣ ⁣ There’s something admirable about showing up, gritting your teeth, and braving the difficult even when every cell in your body is shrieking at you to run and hide from the world. Even when you are less than perfect.⁣ ⁣ Maybe you’re feeling mentally, emotionally, and/or physically weak right now and that’s ok. ⁣ ⁣ I know your spirit is resilient. ⁣ ⁣ From my experience the true hero’s journey is not the transition from weakness into strength, but rather strength into weakness.⁣ ⁣ It’s gonna be ok. - 17 hours ago

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‘Parrot’ - This brilliant parrot coming in for a landing makes a great design that’s sure to bring a spark of life and pop of colour into any room. Designed by @PurpleSpeedwell 😊⁣
⁣
And today you can get 20% off site-wide with code: TWENTY⁣
⁣
All proceeds help us support people living with ME!⁣
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#myalgicencephalomyelitis #artonamission #millionsmissing #chronicillness #chronicpain #pwME #invisibleillness #spoonie #nonprofit #nonprofitorganization #awareness #disability #independentartists #redbubble #graphicdesign #digitalart #parrot #birds #flying #art #design #parrots #parrotlover #birdlovers #nature #wildlife #animallovers

‘Parrot’ - This brilliant parrot coming in for a landing makes a great design that’s sure to bring a spark of life and pop of colour into any room. Designed by @PurpleSpeedwell ⁣ ⁣ And today you can get 20% off site-wide with code: TWENTY⁣ ⁣ All proceeds help us support people living with ME!⁣ ⁣ #myalgicencephalomyelitis #artonamission #millionsmissing #chronicillness #chronicpain #pwME #invisibleillness #spoonie #nonprofit #nonprofitorganization #awareness #disability #independentartists #redbubble #graphicdesign #digitalart #parrot #birds #flying #art #design #parrots #parrotlover #birdlovers #nature #wildlife #animallovers - 17 hours ago

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Day 20 of #chronicillnessandme - "Words for someone newly diagnosed"
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It's okay to grieve for your past self. It's okay to grieve for who you may have been. It's okay to grieve for your health
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You will find yourself again. Maybe it'll be someone new you'll encounter on a chance meeting - someone more wise, more empathetic. Or maybe you'll meet the old you again, just with a different view of the world and how you fit into it
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You will return. My life changed dramatically when I became ill and for many years I was a shadow. I didn't feel like I was a human. When I received proper treatment, slowly but surely I felt myself coming back into the present
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Being ill gave me a very different view of the world, view of different types of people and it taught me how other people's past situations have shaped them and how I would have to alter how I want to live in order to cope with my illnesses. However, it also gave me pain & an unimaginable amount of suffering that I wouldn't wish on my worst enemy. I have very mixed feelings, which is entirely normal
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#chronicillness #chronicpainawareness #chronicillnesslife #chronicpain #chronicwarrior #chronicallyill #flareup #invisibleillnessawareness #invisibleillness #spooniestrong #spoonies #spooniesupport #spooniecommunity #potsiestrong #potsies #potsielife #mecfs #cfs #millionsmissing #chronicillnesswarrior #youdontlooksick #spooniememe #endometriosis #spooniefamily #spoonielove #invisibledisability #dysautonomia #ehlersdanlos #zebrastrong

Day 20 of #chronicillnessandme - "Words for someone newly diagnosed" . . It's okay to grieve for your past self. It's okay to grieve for who you may have been. It's okay to grieve for your health . . You will find yourself again. Maybe it'll be someone new you'll encounter on a chance meeting - someone more wise, more empathetic. Or maybe you'll meet the old you again, just with a different view of the world and how you fit into it . . You will return. My life changed dramatically when I became ill and for many years I was a shadow. I didn't feel like I was a human. When I received proper treatment, slowly but surely I felt myself coming back into the present . . Being ill gave me a very different view of the world, view of different types of people and it taught me how other people's past situations have shaped them and how I would have to alter how I want to live in order to cope with my illnesses. However, it also gave me pain & an unimaginable amount of suffering that I wouldn't wish on my worst enemy. I have very mixed feelings, which is entirely normal . . #chronicillness #chronicpainawareness #chronicillnesslife #chronicpain #chronicwarrior #chronicallyill #flareup #invisibleillnessawareness #invisibleillness #spooniestrong #spoonies #spooniesupport #spooniecommunity #potsiestrong #potsies #potsielife #mecfs #cfs #millionsmissing #chronicillnesswarrior #youdontlooksick #spooniememe #endometriosis #spooniefamily #spoonielove #invisibledisability #dysautonomia #ehlersdanlos #zebrastrong - 17 hours ago

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[Werbung wegen Markenverlinkung]

Wie leer das hier aussieht, wenn keine drei Hunde auf der Couch liegen. 😂

Fred und ich hatten heute ganz spontan Besuch. Er von seiner Freundin, ich von meiner. Gut für uns beide, dass meine Freundin das Frauchen von seiner Freundin ist. Und seit nem halben Jahr hat seine Freundin einen Mitbewohner, also meine Freundin einen Welpen. Der war natürlich auch dabei.

Kommt ihr noch mit? Ich könnte meinen, ich hätte einen Kurs darin belegt wie man Dinge so kompliziert wie irgendwie möglich ausdrückt, aber weit gefehlt, ich kann das einfach so. Bin quasi ein Naturtalent. 😂🙈😁 .

Jedenfalls hatten wir einen schönen Tag. So. 😁😍 .

Nach gestern eigentlich ein Wunder, dass ich nicht im Stehen eingeschlafen bin. Obwohl mein Ausdrucksvermögen schon echt gelitten hat. Daran merk ich meine Erschöpfung immer sofort: Ich kann nicht mehr reden. 😂🤷🏽‍♀️ .

Jetzt bin ich aber entsprechend platt. Werde auch gleich ins Bett gehen, denk ich. 😴

Vorher muss ich aber noch meine Taille ausmessen, denn ich habe einen Rock von @bonnieandbuttermilk gewonnen! 😁 Ich freu mich wie Bolle! 🎉 Hab beschlossen, dass das der Beginn einer Glücksphase ist. Ab sofort geht es also nur aufwärts. So. Jetzt wisst ihr Bescheid. 😏😉😂 .

Ich such dann mal mein Maßband und wünsche euch noch einen schönen Abend und natürlich eine tolle Woche. 😁🤗

[Werbung wegen Markenverlinkung] Wie leer das hier aussieht, wenn keine drei Hunde auf der Couch liegen. Fred und ich hatten heute ganz spontan Besuch. Er von seiner Freundin, ich von meiner. Gut für uns beide, dass meine Freundin das Frauchen von seiner Freundin ist. Und seit nem halben Jahr hat seine Freundin einen Mitbewohner, also meine Freundin einen Welpen. Der war natürlich auch dabei. Kommt ihr noch mit? Ich könnte meinen, ich hätte einen Kurs darin belegt wie man Dinge so kompliziert wie irgendwie möglich ausdrückt, aber weit gefehlt, ich kann das einfach so. Bin quasi ein Naturtalent. . Jedenfalls hatten wir einen schönen Tag. So. . Nach gestern eigentlich ein Wunder, dass ich nicht im Stehen eingeschlafen bin. Obwohl mein Ausdrucksvermögen schon echt gelitten hat. Daran merk ich meine Erschöpfung immer sofort: Ich kann nicht mehr reden. 🤷🏽‍♀️ . Jetzt bin ich aber entsprechend platt. Werde auch gleich ins Bett gehen, denk ich. 😴 Vorher muss ich aber noch meine Taille ausmessen, denn ich habe einen Rock von @bonnieandbuttermilk gewonnen! Ich freu mich wie Bolle! Hab beschlossen, dass das der Beginn einer Glücksphase ist. Ab sofort geht es also nur aufwärts. So. Jetzt wisst ihr Bescheid. . Ich such dann mal mein Maßband und wünsche euch noch einen schönen Abend und natürlich eine tolle Woche. 🤗 - 18 hours ago

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It's not too late to create a Facebook Fundraiser to support our #MayMomentum fundraising campaign! Follow the link in our bio to set one up in as little as 60 seconds.

Your fundraiser will ensure that OMF-funded researchers can act quickly on exciting and promising new findings about ME/CFS.

Your Facebook Fundraisers have already raised more than $37,000 this month! Thank you to all of our incredible supporters for making groundbreaking ME/CFS research possible.

#EndMECFS #MECFS #PwME #MyalgicE #OMF #OpenMedicineFoundation #millionsmissing #myalgicencephalomyelitis

It's not too late to create a Facebook Fundraiser to support our #MayMomentum fundraising campaign! Follow the link in our bio to set one up in as little as 60 seconds. Your fundraiser will ensure that OMF-funded researchers can act quickly on exciting and promising new findings about ME/CFS. Your Facebook Fundraisers have already raised more than $37,000 this month! Thank you to all of our incredible supporters for making groundbreaking ME/CFS research possible. #EndMECFS #MECFS #PwME #MyalgicE #OMF #OpenMedicineFoundation #millionsmissing #myalgicencephalomyelitis - 18 hours ago

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... #illustration #sketchbook #pleasemakeitstop #stillsleeping #millionsmissing #cfs #lostvoicesstiftung

... #illustration #sketchbook #pleasemakeitstop #stillsleeping #millionsmissing #cfs #lostvoicesstiftung - 18 hours ago

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Had a cracking few hours out but I'm so dead now! We took the train to a seaside village not far from us. Went to the duck park, rolled along the prom, & grabbed some lunch and an #icecream (totally the best 🍦s we'd ever had!) 😊 I mega crashed, not sure why...food, sunlight, people, ME levels, combination?! Had to lie on the ground at train station & had a cluster of #seizures on the train home, literally a 30+ min blank & about 15mins of constant seizures. I have a ton of pics but gonna hide in the dark & rest for a while.
#ilovemypartner #fulltimecarer #myalgicencephalomyelitis #pwme #severeME #chronicpain #dysautonomia #disabled #disability #spoonie #millionsmissing #MEawarenessday #photography #dallysdayout

Had a cracking few hours out but I'm so dead now! We took the train to a seaside village not far from us. Went to the duck park, rolled along the prom, & grabbed some lunch and an #icecream (totally the best s we'd ever had!) I mega crashed, not sure why...food, sunlight, people, ME levels, combination?! Had to lie on the ground at train station & had a cluster of #seizures on the train home, literally a 30+ min blank & about 15mins of constant seizures. I have a ton of pics but gonna hide in the dark & rest for a while. #ilovemypartner #fulltimecarer #myalgicencephalomyelitis #pwme #severeME #chronicpain #dysautonomia #disabled #disability #spoonie #millionsmissing #MEawarenessday #photography #dallysdayout - 19 hours ago

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I had some great days! Isn’t that lovely to hear, I didn’t post because I was busy doing things and being out of the house... 😏 
I’ll tell you about it soon, I was going to today but after lovely days follow pay-back days and my period also decided to show up so I’m just not up for it 💁🏼‍♀️ .
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So, today I will share another way to get educated! This is the film Unrest. It is a documentary by Jennifer Brea, who has ME herself. It’s on the Dutch Netflix for sure (sorry interntional friends, I’m not sure about the rest). Does it get any easier?
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It’s been a while since I’ve seen it and the main thing I remember is being moved by her husbands care for her, that really hit home for me with the amazing @jackandbeans taking care of me too. 
Another thing is the hope she has at one point trying out new medication. It is visualized very well and recognizable how this (false) hope manifests.... .
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It’s a must watch if you want to understand ME better and also be informed about the lack of medical care there is for this disease. Or to feel represented and recognized if you are a fellow person with ME (as long as your illness/state of mind lets you).
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🚫I do wanna give a trigger warning. It’s not an easy-to-watch documentary. It’s can be quite intense, so please make sure you are in a right state of mind to watch it 💞
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Repost @unrestfilm

I had some great days! Isn’t that lovely to hear, I didn’t post because I was busy doing things and being out of the house... I’ll tell you about it soon, I was going to today but after lovely days follow pay-back days and my period also decided to show up so I’m just not up for it 🏼‍♀️ . . So, today I will share another way to get educated! This is the film Unrest. It is a documentary by Jennifer Brea, who has ME herself. It’s on the Dutch Netflix for sure (sorry interntional friends, I’m not sure about the rest). Does it get any easier? . It’s been a while since I’ve seen it and the main thing I remember is being moved by her husbands care for her, that really hit home for me with the amazing @jackandbeans taking care of me too. Another thing is the hope she has at one point trying out new medication. It is visualized very well and recognizable how this (false) hope manifests.... . . It’s a must watch if you want to understand ME better and also be informed about the lack of medical care there is for this disease. Or to feel represented and recognized if you are a fellow person with ME (as long as your illness/state of mind lets you). . . I do wanna give a trigger warning. It’s not an easy-to-watch documentary. It’s can be quite intense, so please make sure you are in a right state of mind to watch it . . Repost @unrestfilm - 19 hours ago

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A milestone. Signing up for a yoga class. I longed for this moment since 2016. The teacher I wished for. She sent me the forms and the quote. There was only one place left in this year's class, and it's mine now. The yoga mat today, the punching bag tomorrow.

#myalgischeenzephalomyelitis #myalgicencephalomyelitis #cfsme #pwme #meawareness #recoveryispossible #neversaydie #millionsmissing #MMissingGermany #MEAction

A milestone. Signing up for a yoga class. I longed for this moment since 2016. The teacher I wished for. She sent me the forms and the quote. There was only one place left in this year's class, and it's mine now. The yoga mat today, the punching bag tomorrow. #myalgischeenzephalomyelitis #myalgicencephalomyelitis #cfsme #pwme #meawareness #recoveryispossible #neversaydie #millionsmissing #MMissingGermany #MEAction - 19 hours ago

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In “Multiple Chemical Sensitivities Under Siege,” Dr. Ann McCampbell says:
It is a credit to the chemical industry’s public relations efforts that we frequently hear that multiple chemical sensitivities (MCS) is “controversial” or find journalists who feel obligated to report “both sides” of the MCS story, or attempt to give equal weight to those who say MCS exists and those who say it does not. But this is very misleading, since there are not two legitimate views of MCS. Rather, there is a serious, chronic, and often disabling illness that is under attack by the chemical industry.
The manufacturers of pesticides, carpets, perfumes, and other products associated with the cause or exacerbation of chemical sensitivities adamantly want MCS to go away. Even though a significant and growing portion of the population report being chemically sensitive, chemical manufacturers appear to think that if they can just beat on the illness long enough, it will disappear. …
Like the tobacco industry, the chemical industry often uses non-profit front groups with pleasant sounding names, neutral-appearing third party spokespeople, and science-for-hire studies to try to convince others of the safety of their products. This helps promote the appearance of scientific objectivity, hide the biased and bottom-line driven agenda of the chemical industry, and create the illusion of scientific “controversy” regarding MCS. But whether anti-MCS statements are made by doctors, researchers, reporters, pest control operators, private organizations, or government officials, make no mistake about it - the anti-MCS movement is driven by chemical manufacturers. This is the real story of MCS. ———————————-#speakevenifyourvoiceshakes #morepeopleneedtoknow #multiplechemicalsensitivity #disabilityawareness #invisibleillnessawareness #allthelies #justsoyouknow #seekthetruth #thetruthis #chemicalsensitivities #mcsawareness #millionsmissing #millionscantbewrong #thisiswhy #toxicchemicals #disabilityawareness #humanrights #chronicfatiguesyndrome #fibromyalgiaawareness #moneytalks #myrighttobreathe #chemicalfreelifestyle #mcs #youshouldlisten

Reposted • @warrior_from_m.a.r.s

In “Multiple Chemical Sensitivities Under Siege,” Dr. Ann McCampbell says: It is a credit to the chemical industry’s public relations efforts that we frequently hear that multiple chemical sensitivities (MCS) is “controversial” or find journalists who feel obligated to report “both sides” of the MCS story, or attempt to give equal weight to those who say MCS exists and those who say it does not. But this is very misleading, since there are not two legitimate views of MCS. Rather, there is a serious, chronic, and often disabling illness that is under attack by the chemical industry. The manufacturers of pesticides, carpets, perfumes, and other products associated with the cause or exacerbation of chemical sensitivities adamantly want MCS to go away. Even though a significant and growing portion of the population report being chemically sensitive, chemical manufacturers appear to think that if they can just beat on the illness long enough, it will disappear. … Like the tobacco industry, the chemical industry often uses non-profit front groups with pleasant sounding names, neutral-appearing third party spokespeople, and science-for-hire studies to try to convince others of the safety of their products. This helps promote the appearance of scientific objectivity, hide the biased and bottom-line driven agenda of the chemical industry, and create the illusion of scientific “controversy” regarding MCS. But whether anti-MCS statements are made by doctors, researchers, reporters, pest control operators, private organizations, or government officials, make no mistake about it - the anti-MCS movement is driven by chemical manufacturers. This is the real story of MCS. ———————————-#speakevenifyourvoiceshakes #morepeopleneedtoknow #multiplechemicalsensitivity #disabilityawareness #invisibleillnessawareness #allthelies #justsoyouknow #seekthetruth #thetruthis #chemicalsensitivities #mcsawareness #millionsmissing #millionscantbewrong #thisiswhy #toxicchemicals #disabilityawareness #humanrights #chronicfatiguesyndrome #fibromyalgiaawareness #moneytalks #myrighttobreathe #chemicalfreelifestyle #mcs #youshouldlisten Reposted • @warrior_from_m.a.r.s - 19 hours ago

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#Repost @mylongwalkforme with @get_repost
・・・
Hej och goddag! 😀Nu är det en dryg månad kvar till Fotrally eller Ultramaratonmarschen som det numera heter. Min träning flyter på hyfsat och det är med förväntan jag ser fram emot att göra det här.

Jag skulle dock behöva lite hjälp. Vi tänker att det vore bra om jag har några kläder, tröja eller t-shirt under loppet som talar om vad jag gör. Att jag samlar in pengar till @openmedf och sprider info om ME. Den tröjan jag gjorde för träning var lite för rörig och dessutom dyr att tillverka för mig. Så jag skulle behöva någon med både idéer och kunnande och möjlighet att trycka billigt, helst gratis. Allt är ju för en god sak💙 Tack på förhand för idéer och förslag! Mvh Magnus (PS. Dela gärna där ni tycker det passar)

#mylongwalkforme #mecfs #mecfsawareness #invisibleillness #myalgicencephalomyelitis #chronicfatigue #chronicpain #millionsmissing #spreadingawareness #positivevibes #inspiration  #chronicillness #jagärMEdEr #MEAllierad #fotrally #training #träning #ultra #printing #tryck #tshirt #tshirtprint #ultramaratonmarschen

#Repost @mylongwalkforme with @get_repost ・・・ Hej och goddag! 😀Nu är det en dryg månad kvar till Fotrally eller Ultramaratonmarschen som det numera heter. Min träning flyter på hyfsat och det är med förväntan jag ser fram emot att göra det här. Jag skulle dock behöva lite hjälp. Vi tänker att det vore bra om jag har några kläder, tröja eller t-shirt under loppet som talar om vad jag gör. Att jag samlar in pengar till @openmedf och sprider info om ME. Den tröjan jag gjorde för träning var lite för rörig och dessutom dyr att tillverka för mig. Så jag skulle behöva någon med både idéer och kunnande och möjlighet att trycka billigt, helst gratis. Allt är ju för en god sak Tack på förhand för idéer och förslag! Mvh Magnus (PS. Dela gärna där ni tycker det passar) #mylongwalkforme #mecfs #mecfsawareness #invisibleillness #myalgicencephalomyelitis #chronicfatigue #chronicpain #millionsmissing #spreadingawareness #positivevibes #inspiration #chronicillness #jagärMEdEr #MEAllierad #fotrally #training #träning #ultra #printing #tryck #tshirt #tshirtprint #ultramaratonmarschen - 19 hours ago

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New blog up.

Need to Conserve my energy today I think.

https://lifewithahiddenillness.wordpress.com/

#millionsmissing #meawareness #ME #mewarrior #mepw #hiddenillness #chronicillness #chronicfatiguesyndrome #spoontheory #spoonie #spooniesupport #carryon #invisibleillnessawareness #mentalillness

New blog up. Need to Conserve my energy today I think. https://lifewithahiddenillness.wordpress.com/ #millionsmissing #meawareness #ME #mewarrior #mepw #hiddenillness #chronicillness #chronicfatiguesyndrome #spoontheory #spoonie #spooniesupport #carryon #invisibleillnessawareness #mentalillness - 19 hours ago

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Advice to someone newly diagnosed with ME...
Make peace with your new life.  Do not push yourself.  Learn how to say no. Stop punishing yourself for what you can no longer do. Don't let doctors force unnecessary medications upon you.  Learn to be your own advocate. 
Rest. Rest. Rest.
#spoonievillagephotochallenge #mayisMEawareness #chronicillnessandme #millionsmissing #canyouseeMEnow #chronicillness #meaction #openmedicinefoundation #housebound #researchfunding #doctortraining #MEactionspeakout #hearMEnow

Advice to someone newly diagnosed with ME... Make peace with your new life. Do not push yourself. Learn how to say no. Stop punishing yourself for what you can no longer do. Don't let doctors force unnecessary medications upon you. Learn to be your own advocate. Rest. Rest. Rest. #spoonievillagephotochallenge #mayisMEawareness #chronicillnessandme #millionsmissing #canyouseeMEnow #chronicillness #meaction #openmedicinefoundation #housebound #researchfunding #doctortraining #MEactionspeakout #hearMEnow - 20 hours ago

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First time in make up for about 10 years (thanks @makeup_by_elleuk ) but somehow Cinderella made it to the ball! Family scrubbed up alright for the @kicking.off ball which ended up going really well :) Oh and the cakes were amazing! #hummingbirdbakery 
If anyone is looking for a charity to support or wants to help out in anyway please check them out... They are doing really cool things. .
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#cinderella #kickingoff #charityball #fundraiser #family #scrubbedupwell #chronicfatiguesyndrome #spooniedayout #spoonie #spooniesisters #posturalorthostatictachycardiasyndrome #hotsforpots #instagood #cfsme #invisibleillness #millionsmissing #butyoudontlooksick #dresstoimpress #dressuptime

First time in make up for about 10 years (thanks @makeup_by_elleuk ) but somehow Cinderella made it to the ball! Family scrubbed up alright for the @kicking.off ball which ended up going really well :) Oh and the cakes were amazing! #hummingbirdbakery If anyone is looking for a charity to support or wants to help out in anyway please check them out... They are doing really cool things. . . . #cinderella #kickingoff #charityball #fundraiser #family #scrubbedupwell #chronicfatiguesyndrome #spooniedayout #spoonie #spooniesisters #posturalorthostatictachycardiasyndrome #hotsforpots #instagood #cfsme #invisibleillness #millionsmissing #butyoudontlooksick #dresstoimpress #dressuptime - 20 hours ago

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#news 😎
23.05.2019
#Grundgesetz #Würde #Gesundheit #Berlin #Demo
#Bundestag
12 Uhr
#millionsmissinggermany
#MillionsMissing
#forschung
#wewantourlivesback
#pwME
#mewarrior
#myalgischeenzephalomyelitis

#news 😎 23.05.2019 #Grundgesetz #Würde #Gesundheit #Berlin #Demo #Bundestag 12 Uhr #millionsmissinggermany #MillionsMissing #forschung #wewantourlivesback #pwME #mewarrior #myalgischeenzephalomyelitis - 20 hours ago

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https://fightingwithfibro.com/2019/03/15/22-lesser-known-facts-about-fibro/

#fightingwithfibro #fibromyalgia #FibromyalgiaAwareness #thisisfibro #ChronicFatigueSyndrome #MillionsMissing #cfsawareness #chronicpain #chronicillness #migraines #dysautonomia #raynauds #rls #brainlesion #mentalhealth #mentalhealthawareness

https://fightingwithfibro.com/2019/03/15/22-lesser-known-facts-about-fibro/ #fightingwithfibro #fibromyalgia #FibromyalgiaAwareness #thisisfibro #ChronicFatigueSyndrome #MillionsMissing #cfsawareness #chronicpain #chronicillness #migraines #dysautonomia #raynauds #rls #brainlesion #mentalhealth #mentalhealthawareness - 20 hours ago

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How do you describe the invisible?
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The flu, the world's worst hangover, running a marathon on empty. With art, poetry, films and documentaries.

We record with images and words in an attempt to share out stories. Are we truly ever heard?
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I've been writing more poetry lately to help me through the worst flare I have had in a while. Its depressing that it hurts to do so (just being awake in general) but I am so inspired by so many beautiful people. @doodlepeoplexo @smoggyknits @sakaradee @rosem0nde @chronically_cassie to name just a few. I seem them striving and it feeds my own passion, even on these dark days. I am grateful to the spoonie community and to @eatyourkimchi and @littlepineneedle for highlighting its existence ❤️
.
#buildaladder #inspiration #spoonie #chronicfatigue #chronicillness #invisibleillness #exhausted #selfcare #cfs #unchargeables #myalgicencephalomyelitis #mentalhealth #spooniesisterhood #babewithamobilityaid #poetry #youngandsick #wherethetiredgirlsare #makeart #millionsmissing

How do you describe the invisible? . The flu, the world's worst hangover, running a marathon on empty. With art, poetry, films and documentaries. We record with images and words in an attempt to share out stories. Are we truly ever heard? . I've been writing more poetry lately to help me through the worst flare I have had in a while. Its depressing that it hurts to do so (just being awake in general) but I am so inspired by so many beautiful people. @doodlepeoplexo @smoggyknits @sakaradee @rosem0nde @chronically_cassie to name just a few. I seem them striving and it feeds my own passion, even on these dark days. I am grateful to the spoonie community and to @eatyourkimchi and @littlepineneedle for highlighting its existence ️ . #buildaladder #inspiration #spoonie #chronicfatigue #chronicillness #invisibleillness #exhausted #selfcare #cfs #unchargeables #myalgicencephalomyelitis #mentalhealth #spooniesisterhood #babewithamobilityaid #poetry #youngandsick #wherethetiredgirlsare #makeart #millionsmissing - 20 hours ago

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#quoteoftheday #friendsliftyouup #positivequotes #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #cfs #cfsme #myalgicencephalomyelitis #EDS #hEDS #ehlersdanlossyndrome #hypermobility #potssyndrome #strongthroughitall #spoonie #spoonielife #millionsmissing

#quoteoftheday #friendsliftyouup #positivequotes #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #cfs #cfsme #myalgicencephalomyelitis #EDS #hEDS #ehlersdanlossyndrome #hypermobility #potssyndrome #strongthroughitall #spoonie #spoonielife #millionsmissing - 21 hours ago

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#Repost @solve_cfs with @get_repost
・・・
Share this quote graphic, if you can relate. #SolveMECFS #MECFS
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#cfs #seid #mecfs #cfsme #chronicfatigue #chronicillness  #severeme  #seid #meawareness #meaware #MECFS 
#May12MECFSAwareness #CFS
#SolveMECFS (SMCI) #SolveME #EndMECFS (OMF) #PwME #Spoonie #KissMEgoodbye (OMF)
#MyE #NeuroME #Unrest (film) #TimeForUnrest (campaign) #MECFS17 (OMF) #MillionsMissing #MEActNet (MEAction)

#Repost @solve_cfs with @get_repost ・・・ Share this quote graphic, if you can relate. #SolveMECFS #MECFS • • • #cfs #seid #mecfs #cfsme #chronicfatigue #chronicillness #severeme #seid #meawareness #meaware #MECFS #May12MECFSAwareness #CFS #SolveMECFS (SMCI) #SolveME #EndMECFS (OMF) #PwME #Spoonie #KissMEgoodbye (OMF) #MyE #NeuroME #Unrest (film) #TimeForUnrest (campaign) #MECFS17 (OMF) #MillionsMissing #MEActNet (MEAction) - 21 hours ago

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What happen 
I knw Its Fake Smile #lovinglines #millionsmissing #instagram #photography #zaynmalik

What happen I knw Its Fake Smile #lovinglines #millionsmissing #instagram #photography #zaynmalik - 21 hours ago

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Chronical Fatigue syndrom - this is what it feels like. #angrypost #instalifeisnotjustbeautiful #feelingtired #cfs #lostvoicesstiftung #millionsmissing #iwantmyspoonsback

Chronical Fatigue syndrom - this is what it feels like. #angrypost #instalifeisnotjustbeautiful #feelingtired #cfs #lostvoicesstiftung #millionsmissing #iwantmyspoonsback - 14 days ago

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