#MEawarenessweek

[cfs-crohns-colitis-warrior]

I keep forgetting to post on here this week, but I’ve remembered today!

Here are a couple of text posts from the M.W Associations IG page giving examples of what it feels like when you have debilitating fatigue. These answers are straight from the previous days question post from people who suffer from it themselves.

#chronic illness warrior #chronic fatigue syndrome #myalgic encephalomyelitis #cfs/me #chronic illness #awareness #chronic illnesses #exhaustion #me/cfs #meawarenessweek #me/cfs awareness #me/cfs awareness week #me awareness week #debilitating fatigue #fatigue

[brooksmeatswift]

𝗪𝗵𝗮𝘁 𝗶𝘀 𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗪𝗲𝗲𝗸? . Like most terminal or chronic illnesses and disabilities, we have a week and a day (within that week: Thursday 12th May) in May each year, that is designed to raise awareness about our condition: ME/CFS . Having suffered since 2004 when I was diagnosed with Glandular Fever and then had a formal diagnosis in 2006 at a specialised ME/CFS clinic at St Bart’s in London - I have seen first hand why we need to raise awareness . For so long our community of sufferers have faced stigma from non believers, medical professionals and the media over what is a truly debilitating condition . Since the turn of the last decade, the research and belief in our illness has increased. And since the turn of this one and the introduction of Covid and more aptly, Long Covid. There seems to be more discussion about ME/CFS especially in the media as Long Covid has a very similar if not identical list of symptoms as what we suffer . So this week I will talk a little about what this illness is and just make you all a little more aware of what we go through and will try to come in live at least once, symptoms allowing . Please do ask questions and I will try to answer them where I can. And don’t forget there is our blue Sunday Tea Party this Sunday - I have a donation button in my profile - just the price of a cuppa and slice of cake, any little bit will help the MEA with research and care for fellow sufferers . . . #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #meawarenessweek #meawarenessday (at Windsor, Berkshire) https://www.instagram.com/p/CdVbXGPs_Yr/?igshid=NGJjMDIxMWI=

#me #cfs #relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #meawarenessweek #meawarenessday

[lisacatherwood]

Me and M.E.

The Horror

Fatigue as a word doesn’t begin to describe the horror that they casually call Chronic Fatigue Syndrome or M.E. - Myalgic Enephalo Myelitis

I was 14 in 1980 when I contracted a virus known then as glandular fever. I was seriously less than chuffed… I was an 800 meter runner. I was a member of my town swimming club, doing competitive swimming and planning to do scuba diving training (I desperately wanted to be a Marine Biologist). I played hockey and went on my bike to the athletics club on a Saturday. I had a lot to do, but I had friends who had had the illness, a cousin who had been very ill and had had a long recovery over some weeks, so we knew what to expect, and I wasn’t too worried.

I had a high fever and then a low grade fever and felt really rotten and it simply didn’t go away. It’s such a simple thing to write down but the reality was and is horrific for my family as well as for me.

I was finally diagnosed with M.E. (myalgic encephalomyelitis) when I was 22 years old. In the intervening time I had had nearly two years off school. I got O’ levels, at 16, doing two year’s work in a year but was then so poorly during my 6th form that I largely blew my ‘A’ Levels at 18. I spent some time in the metabolic unit at my local hospital as they tried to work out what was wrong, with no success. It was frightening and disappointing for me, and for my family. I was so exhausted, confused and miserable that I couldn’t even fill in the university applications never mind thinking of packing and going.

A pattern developed which has persisted until now, forty years later. I would start to rebuild my life out of the illness and then catch a bug or even just overdo it a little and be destroyed by it. The illness seems to be something to do with a defunct immune system. Some bugs, colds, flus etc. I catch and get over the same as other people, some I catch and it’s like my immunity fails. I can’t get rid of the bug and the symptoms persist for months and months. In my body it feels like the immunity starts to triumph in one part of the system, but is overwhelmed in others. Like chasing dry rot round an old house. The painful joints start to feel better and then it flares in my digestive system and I have nausea and other digestive symptoms. Or the headaches die away and I feel so physically weak, I can’t stand steadily, lift a kettle, turn a tap on, hold a pen. Not just tired, but sore and stiff and lacking control. I have had long periods of being incredibly fatigued cold and hungry. Mind numb, sluggish forgetful, time concertinas, days, weeks pass in weird disjointed forms, sometimes I can barely speak. Summer days spent in low light indoors with two duvets and a hot water bottle, the central heating on, the fire lit, still freezing cold.

Every year or two Something happens which knocks me down into bed for months, sometimes years. After the initial sickness illness the convalescence is unending. I have described it as being like the worst flu and hangover you have ever had combined and lasting for months – the problem with this description is that I don’t think it really explains it, people don’t really remember what that level of awfulness feels like. The brain has a gift for not really storing the memory of physical symptoms – pain discomfort etc. We remember as an intellectual exercise not as a visceral experience. Even if you can vaguely put together a sensation of what that might be like it doesn’t really scratch the surface. (Try thinking of what a strawberry tastes like – really imagine it, hard as you can. Now eat a strawberry. See?)

The terror of finding you can’t roll over in bed on your own, the humiliation of having to have your personal care taken care of by someone else, the days when all the radios in the world are on in your head, all light is too bright, all sound is too intense, the indignity of being questioned like a criminal in benefits offices and doctors surgeries. I think I can now write openly about all of this because I have nothing left to lose.

I think I had always tried to hide the damage the illness does particularly to my mind because I was afraid of a diagnosis of mental illness. I had an acquaintance who had the same symptoms as me when we were in our twenties, she ended up on a ward in our local mental hospital. They took her drawing materials away from her. They wouldn’t let her write. I fear this kind of thing more than anything.

I have not been idle. I have not been a scrounger. I have a tiny website design business. I work as much as I can always from home and now employ two people part time. I am a self taught artist and designer and love my work when I can do it and I do it as much as I can. Just at the moment that isn’t very much. But I live in hope.

I don’t have any children. We sat down and thought about it. It seemed that to bring a child into a house where their mother could spend long periods unable to look after them was a bad thing to do. We made the choice some years ago and given how my health has been subsequently we were right. We made an adult choice and we live with that every day. It doesn’t mean it wasn’t and isn’t painful. I say 'we' but my marriage broke up after 23 years due in no small part to the effect of my illness. When we married I was 25 and the prognosis was that the illness would lessen and in at worst 7 years it would be gone. I'd grow out of it.

I am writing now because I feel awful, my hands ache the tears of weariness and anguish are running down my face. The brain fog is ghastly and I feel so alone and isolated. My next major birthday I am 54. I have not learned to scuba dive. I didn’t become a marine biologist. In some ways it would not be over dramatic to say this illness has ruined my life. Certainly it has ruled it, changed it, made it unpredictable, difficult, at times nearly unbearable.

I saw a child on the TV the other night, recently diagnosed with ME/CFS, he is lying there, another little grey shape in a bed (we all go that way) and I saw the desperation in his mother and recognised myself and my mother. The silent scream of horror I had at seeing it all happening again was from the depths of my being.

That the scream was silent is partly because I don’t have the strength to scream and partly because I have no words. It is not just me – the English Language has not got the words.

I had a really bad flare which put me in hospital unable to walk in Oct 2018 and I’m still housebound/bedbound dealing with the consequences. Applied for disability benefit got a home visit and didn’t score a single point even after 40 years I am not believed. Too ill to fight for it and terrified about the future. My incredible Mum stepped in again to take care of me when this latest flare happened. I have no words to express my combined gratitude and shame for being this kind of endlessly needy daughter. l when, at this age I should be taking care of her.

Originally Written September 2012.

Header Artwork originally by me aged 15.

Added to in 2015 after my marriage broke up.

Updated July 2018 and again Feb 2020 for #MEAwarenesshour on Twitter every Wednesday share relevant content with the hashtag to help raise awareness.

Reposted July 2020 to send to @OxMEDiscovery

#mecfsartist #mecfswarrior #meawarenesshour #mecfs #myalgicencephalomyelitis #myalgic encephalomyelitis #MEawarenessweek #me awareness month #millionsmissing

[komaeda-nagayto]

Graphics from @meassociation Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is so much more than “just being tired”. I struggle every day. Over the years of being sick it has just gotten worse over time, from a mild case to a moderate case. These are various symptoms that people with #mecfs have to live with every single day. I can’t even begin to describe what I go through. The muscle aches. The weak limbs. The sleep issues. The fatigue I feel in my bones. It’s #meawarenessweek and #meawarenessmonth. I try to be open about it all year because I feel it’s important to bring it to light. There is not enough going in to studies for it. There is no cure, just management. #cfsme #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis https://www.instagram.com/p/CO6WoeFpC9r/?igshid=dfvyehsn0tcz

#mecfs #meawarenessweek #meawarenessmonth #cfsme #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis

[rttpbookblog]

M.E/CFS Awareness Week With #Author KT KING & Her Books Little Eden 1 & 2. @ktkingbooks My 9 Star Book Review of Little Eden Another Magic Book 2. 'KT Kings Writing is Passionate, Enchanting and Spellbinding. It is a steady paced book which suits the book nicely so you can take everything in, explore and get lost within the magical pages. King has created a Heavenly, Enchanting and Spectacular Location with Little Eden. The way King describes the setting is nothing short of wonderful and imaginative with many beautifully captivating well crafted and well-written characters. The perfect Escapism.' https://bit.ly/2X2gHhL #mecfswarrior #me #cfs #awareness #littleeden #bookreview #bookpromo #MEawarenessweek #May12 #lovereading #healing #spirtuality https://www.instagram.com/p/CASS_KHAGXL/?igshid=4i27a1g67ovb

#author #mecfswarrior #me #cfs #awareness #littleeden #bookreview #bookpromo #meawarenessweek #may12 #lovereading #healing #spirtuality

[alishawhittam]

Remember people like me when you get to go back to your life, I will never get to go back to mine 😢#ME #SevereME #meawareness #meawarenessweek #meawarenessmonth #helpmeplease #raiseawareness https://www.instagram.com/p/B_1gKmTHMlt/?igshid=1omt7ztoloed4

#me #severeme #meawareness #meawarenessweek #meawarenessmonth #helpmeplease #raiseawareness

[alimcnamara]

This week I’ve been talking a lot about M.E. for M.E. Awareness Week But today actually is M.E. Day - but why this date? The 12th May is Florence Nightingale’s Birthday and she too was thought to have suffered from M.E. after she returned for the Crimean War. 🦋 Florence Nightingale (1820 - 1910) was a British nurse who is considered the founder of modern nursing. She was affectionately called "The Lady with a Lamp" referring to how she carried an oil lamp during hospital night rounds. While stationed in Crimea, Nightingale developed "Crimean fever" (a bacteria infection now known as brucellosis) and never recovered. She remained mostly bedbound the rest of her life. Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) were not defined in her lifetime, many current physicians and medical historians believe she developed ME/CFS as a result of a chronic brucellosis infection. In 1854, from the age thirty-five to sixty-years, Florence Nightingale was reported as suffering from chest pains, headaches, rapid muscle fatigue, persistent upper back pain, and being unable to concentrate if more than one person was present. (The above quoted from https://me-pedia.org/wiki/Florence_Nightingale) 🦋 Thanks for reading and commenting on all my #millionsmissing posts this week. I hope you’ve learnt some more about what it’s like living with M.E. 🦋 #mecfs #mecfswarrior #chronicfatiguesyndrome #spoonie #mymejourney #myalgicencephalomyelitis #meawarenessweek #wearethemillionsmissing #meaction https://www.instagram.com/p/BxWkJwpAkdd/?igshid=5w00rnmvmgy1

#millionsmissing #mecfs #mecfswarrior #chronicfatiguesyndrome #spoonie #mymejourney #myalgicencephalomyelitis #meawarenessweek #wearethemillionsmissing #meaction

[astressedmum1-blog]

Day 2 of ME Awareness Week I am sharing our story of how ME came into our lives

#me #meawarenessweek

[robynjt92-blog]

I don't blast about my illness on social media but it is currently ME awareness week. How do I know that? Because I have had this debilitating disease for 3 years. Every day I wake up in agony, feeling un-rested, knowing that I will continue this cycle of feeling like ass probably for life, knowing there is no cure. Consultants in cardiology and ME have both told me "I'm too young" to be sick, so they don't want to help me. No one can offer me any treatment because, well, there isn't any really. So I wake up, spend my days in bed, and try and remain positive that one day someone will invent a cure that will make me able to work, see my friends, and go on holidays where I won't be stuck in bed in another place, or suffering for forcing myself to enjoy life. I am in debt because I cannot work. I am struggling to pay these debts because receiving benefits for something you cannot prove is a very difficult task. I don't look sick, so I'm harder to believe. I don't act sick when I'm with my friends, because I've grown an incredible ability to hide my pain and sickness. I have lost the majority of my friends because people don't like it when you cancel plans. I struggle to make new friends because well, as I said, I spend 90% of my time bed bound. When I stand up, my heart rate jumps up by between 30-60bpm. This means I'm at risk of fainting every time I stand up. Sometimes on bad days, sitting is hard. Because my body is reacting this way, I'm even more exhausted than having the ME on its own, because every little thing is an extreme effort. So to all my friends, family and my incredibly supportive boyfriend, thank you for understanding when I can't come meet you. Thank you for not getting mad when I can't make it to an event. Thank you for messaging me to see how I'm doing, when you already know the answer. To everyone who took the time to read this, thank you for listening and gaining a little insight into life with a chronic illness ❤️ #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #me #myalgicencephalomyelitis #pots #potssyndrome #posturalorthostatictachycardiasyndrome #sickandtiredofbeingsickandtired #meawarenessweek #meawareness #rantpost

#posturalorthostatictachycardiasyndrome #rantpost #chronicpain #chronicillness #myalgicencephalomyelitis #potssyndrome #pots #meawareness #me #chronicfatigue #sickandtiredofbeingsickandtired #chronicfatiguesyndrome #meawarenessweek

[lanakilamiller]

🙋🏼I do - #Repost @myillnessmythoughts ・・・ #mecfs painful truths 🔵 Liking & reposting these posts helps raise awareness for much needed understanding & research so one day we might get to be able to LIVE instead of EXIST. 💙THANK YOU💙 #MEawarenessweek #MEawarenessmonth #MEadvocacy #BelieveME

#repost #meadvocacy #believeme #mecfs #meawarenessmonth #meawarenessweek

[spoonsandsweetner-blog]

‪ It’s #MEAwarenessWeek and #fibromyalgiaawarenessmonth and I’ve picked this photo to best describe my illness. This photo was taken on Christmas Day when I had done way too much for an entire week and came home and slept while everyone else enjoyed the holiday.

M.E/Chronic Fatigue Syndrome has three categories Mild, moderate and severe. I fit into the mild - moderate category with 75% of my body being normal. This means that I’m able to go to work, look after myself and live a pretty normal life. I go to camps, take the rainbows on sleepover and very have nights in with my friends.

M.E has meant that I have to think my entire week through and analyse whether I have enough energy to do things and the fibromyalgia makes me think if my joints are going to let me but what amazes me over the 10 years that I’ve had it is there are so many people still not aware that this illness even exists. So during these two awareness weeks, have a quick google and find out about a really rubbish illness that doesn’t yet have a cure

[brooksmeatswift]

𝕀 𝔸𝕄 ℙ𝕒𝕤𝕤𝕚𝕠𝕟𝕒𝕥𝕖 . I think anyone who knows would say I definitely have passion. In football, music, food, drink and of course my family and friends - but I also have directed my passion towards my illness in recent weeks . I have suffered with ME since my diagnosis of ME/CFS in 2006 following my bout of Glandular Fever in 2004 and it felt like a relatively new condition as I had never heard of it . Fast forward to this relapse after many periods of remission and relapsing and I found a verve of not just wanting to talk more about it to my friends but to raise more awareness via social media . So when DecodeME came around with a study into genetics of sufferers, it reignited that passion - more needs to be done for a generally ignored and not taken seriously illness, you could now say that I am passionate in making our voices heard . . . #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #meawarenessweek #barreblend #iampassionate #iammeditations #meditating #meditation (at Windsor, Berkshire) https://www.instagram.com/p/Cd9_aArMJz_/?igshid=NGJjMDIxMWI=

#me #cfs #relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #meawarenessweek #barreblend #iampassionate #iammeditations #meditating #meditation

[lisacatherwood]

This was an oil painting of mine from some years ago called ‘Planet killer’ inspired by an episode of Babylon 5. Currently being used as part of the promotion surrounding #meawarenessweek It’s M.E. Awareness Week 11th - 17th May. On Wednesday 13th May #MEawarenesshour are calling out worldwide for more research, acknowledgement and medical care. We would love you to join at 8pm, (UK time).♥️ #pwME #ME #MECFS #MyalgicE #Fibro #Fibromyalgia #MyalgicEncephalomyelitis @meawarenesshour @meassociation @12me.be @meawarepics @meactnet @solve_cfs https://www.instagram.com/p/B_9yIl6Bvwf/?igshid=8i7hkmyz0zsz

#meawarenessweek #meawarenesshour #pwme #me #mecfs #myalgice #fibro #fibromyalgia #myalgicencephalomyelitis

[thefaultinourspoons]

Worldwide, 17 million people have M.E and approximately only £47 million has been funded for research in the last 10 years. This means that on average per year, per patient only 28p is given for funding. That’s right, 28p- you can’t even buy a Freddo for that. The world seems to have forgotten about 17 million people who have to fight their own bodies every day. M.E is an illness is expected to affect 1 in 100. 25% are bedbound or housebound, 75% are unable to work and only 5% ever recover. How is this fair? #MEAwarenessWeek

#spoonie #m.e. #cfs

[justaveragejen]

Tweeted

Today is Day 3 of ME Awareness Week and today I am looing at the medical side and the support that we should be getting but are not.https://t.co/vBzuJFfnaw #MEAwarenessWeek #chronicillness #medicalsupport pic.twitter.com/pUSlWkyuKB

— StressedMum (@stressedmum01) May 8, 2019

#IFTTT #Twitter

[alishawhittam]

I have finally managed to update my whole website 🤗

It has taken absolutely everything to get it to a standard that I am happy with. Taking into account that I have zero experience building websites 🙄

It really has been a labour of love.

I am doing all that I can to raise awareness of ME as well as making a difference to ME Sufferers like me.

Big changes for my little family too as we will shortly be launching our own online store.

The store will focus on getting ME noticed, so silly mugs for ME suffers who are in the workplace, phrases on shopping bags , hoodies, T-shirt’s as well as bringing on board items to make a difference to our lives. We will stock pillows, anxiety blankets, mobility help and anything else we can try and test , only then will we put it in our store.

Our main focus right now is Millions Missing and ME Awareness week, I can not wait to share some of the ideas that we have .

As soon as we can we will finally get the meetings sorted, this is one of my main priorities.

It’s going to be a big year x

#ME #SevereME #PWME #Liverpool #MEAwareness #Millionsmissing #MEAwarenessweek #MESufferers #bedridden #wheelchair user #IHATEME