#mecfswarrior

[daisyapples]

I relate to baby yoda because I also fall asleep after doing one thing.

[aliceinfurbyland]

Hello fellow Furby fans! I’ve been a fan since they first came out in 1998! I got a cutie for Christmas and have loved them ever since! This is an old pic of my collection from two years ago, it’s grown since then (need to group them together again soon)!

A little about me: I’m 31, but collect lots of childhood faves, mainly Pokemon but Furby is a big passion of mine currently. I am chronically ill with ME, and have had a relapse recently which has stopped me doing most things in life. I love clothes and colourful outfits, I post on my Instagram @lunglock frequently so please check it out! Two years ago I got a tattoo of my first ever Furby (I’ll take an updated pic soon) and it’s one of my fave tattoos!

I’m here to connect with fellow Furby fans, learn how to skin so I can clean/fix them up! And just have fun as my health makes it hard to do that currently.

Hello to anyone who’s read this *waves*

[myalgicencephalomyelitiscfstom]

From Sten Helmfrid https://twitter.com/StenHelmfrid/status/1288550921685864450

[lisacatherwood]

Me and M.E.

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

I was 14 in 1979 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. 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.

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 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 design business. I work as much as I can and now employ two people part time. I am an 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. 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.

Reposted now because I’m supporting #meawarenesshour and the attempts to get the #millionsmissing heard. I had a bad flare which put me in hospital in Oct 2018 and I’m still housebound dealing with the consequences.

Originally Written September 2012. 

Updated 2022 - still housebound and ill after the 2018 flare but remaining hopeful. 

#meawarenesshour

[nyank00]

#MillionsMissing Animal Crossing edition:

Even in Animal Crossing, we lay out shoes for the people missing from their lives. Even in AC, we support @MEActNet in their fight to end stigma and neglect. Even in AC, we take a stand--even when we struggle to stand.

[lavishcabbage]

My main disability is MEcfs and I'm fundraising for MEaction, who are researching potential treatments and campaigning for better medical and social care for sufferers. If you want to read more, click the just giving link. https://www.justgiving.com/crowdfunding/amie-marie

[ansonmount]

I wonder what it's like to get energy from food.

[ghiblibear]

Wheelchair fundraising

Help raise £1400 to purchase a foldable electric wheelchair

Weʼre raising money to purchase a foldable electric wheelchair. Support this JustGiving Crowdfunding Page.

Hi all!

I have recently been diagnosed with myalgic encephalomyelitis (ME) a neuro-immune condition which effects both my cognition and mobility. I am predominantly bedridden and sadly have had to stop working, give up my degree and most of my hobbies.

Whilst I currently have a manual wheelchair, I am unable to propel it myself and rely on others to help me at all times. There is currently no cure or effective treatment for my condition so I can reasonably expect my mobility issues to continue in the near future. There is now very limited funding from the NHS for mobility equipment and grants are becoming so much harder to come by. I therefore made the decision to start crowdfunding for a chair that will help give me the best possible chance at independence.

What I have discovered in researching chairs is that they are expensive - more expensive than even buying a car. After comparing models it seems that the Pride I-go chair is the best fit for my needs, and is at the lower end in terms of cost.

https://glebehealthcare.co.uk/products/pride-i-go-folding-ultra-portable-powerchair

It is light and foldable meaning it can be stored in the boot of a car and would allow me to attend hospital appointments, get some much needed fresh air and even use public transport, all things I can not currently do without help and considerable strain.

I want to thank anyone in advance who contributes and even if you can't, I would appreciate you sharing my page with a few words about what I am fundraising for.

Many thanks and much love 💜