Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi again everyone,
As some of you already know, I am an artist, and having CFS comes up somewhat frequently in my work. I've decided to start a whole series based around the trials and difficulties of living with this disease, in an effort to raise awareness about it and what we all go through on a daily basis.
I could use your help though. I would love to hear from you guys about what parts of living with CFS are hardest for you. Physically and emotionally. Things that frustrate you, things that make you want to cry, things that make you want to give up. Things you miss doing from before you became ill (if applicable) or things you wish you could do, but can't now. Things you wish everyone around you would understand.
Obviously, I have my own list of things I'd like to represent in my series, but I'd really like to hear from everyone else what their thoughts are, so I can hopefully make it as encompassing and authentic as possible. You can reply here, or if you feel what you want to say is too personal, you can also email me privately at artosthebear@gmail.com.
I am far from a famous artist, but I have had several gallery showings, magazine entries, blog mentions, etc, and am always working on taking my career further, despite the difficulties of always being tired. My site is http://sarahallegra.com for those who are interested. Thank you all very much for your help with this!
Sarah
As some of you already know, I am an artist, and having CFS comes up somewhat frequently in my work. I've decided to start a whole series based around the trials and difficulties of living with this disease, in an effort to raise awareness about it and what we all go through on a daily basis.
I could use your help though. I would love to hear from you guys about what parts of living with CFS are hardest for you. Physically and emotionally. Things that frustrate you, things that make you want to cry, things that make you want to give up. Things you miss doing from before you became ill (if applicable) or things you wish you could do, but can't now. Things you wish everyone around you would understand.
Obviously, I have my own list of things I'd like to represent in my series, but I'd really like to hear from everyone else what their thoughts are, so I can hopefully make it as encompassing and authentic as possible. You can reply here, or if you feel what you want to say is too personal, you can also email me privately at artosthebear@gmail.com.
I am far from a famous artist, but I have had several gallery showings, magazine entries, blog mentions, etc, and am always working on taking my career further, despite the difficulties of always being tired. My site is http://sarahallegra.com for those who are interested. Thank you all very much for your help with this!
Sarah
Physically, I have been so weak that I can't lift my arms. Just reaching for a glass of water on the coffee table while laying on the couch has been too hard. So I have just done without.
Mentally, I think that would have to be the embarrassment I still feel when I tell others what is wrong with me. I still feel instantly judged. I just want so badly to be understood that I am not exaggerating or lazy. I really am sick. Even if I don't look it.
I looked at your work and I found it fascinating. The one that really spoke to me was "incurable". I honestly take about that many supplements everyday. I hate it.
I look forward to seeing more of your work and thank you for trying to educated others about CFS!
Physically, the lack of endurance (like a one cylinder car), the feeling like I am neck deep in golden syrup /maple syrup wading with much effort through each step of daily life, the migranes after eating and the chronic headache, the phases of Insomnia and the chronic mayofascial pain thats like having he shieths around all my muscles in my body ripped out wihout painkillers.
Mentally, when I 'tilt' (overload my head into gridlock like a 'tilted pin ball table'. When I cant process cognatively when with other people.
When I get comprehension induced migrane.
When comprehension reduces me to stutter and stammer and the inability to communicate orally. Total gridlock in someone who used to have measured oral and written communications ability in the top 5% of post graduate Literary Fellows (that really sucks).
Emotionally, when the Anesthstist and Pain Specialist and his team measured my pain levels and pronounced that in their view I will never be able to work again.
When healthy active people dont even spend long enough to properly begin to understand what its like or say "yes I'm like that every day" or their concept of insomnia is waking up twice in the night which is miles away from not being able to go to sleep at night at all.
All the best Sarah in being able to express this illness graphically.
Al
horseluvnhoosier, thank you. Incurable was the first photo I took about being ill, and I took it shortly after I received my official CFS diagnosis. I've been able to streamline my supplement intake somewhat since then, but my cupboard still looks like that, as, I imagine, most of ours do.
Also, I didn't think about this until now, but would either of you (and any people who may be responding to this later) mind if I quoted you in the project? I usually include a little info about the photos as I post them on Flickr, and often when they're being shown in galleries, and it would be great to be able to quote other CFS sufferers. But, if you're not comfortable with that, that's totally cool too.
Thank you again so much for responding to this!
Al
i have fibromialgia which has about 21 seperate symptons including chronic fatigue and pain, ibs ,headaches, balance , brain fog, we are also sensisitive to light sound odurs touch and medications i also have aspergers syndrome which also causes sleep problems oh i am so lucky.
apparently your nobody today if you havent got a syndrome and i have two , [anyone want them] because like everyone eles with these syndromes we dont want them we are not pretending or putting it on we are sick ,and sick of others thinking that think we are just lazy i dont think i am alone with these thoughts sometimes i want to stand on a roof top and scream I AM BLOODY SICK ITS NOT IN MY HEAD] but i just cant be bothered.
i belong to an amertrue show group songs comedy that sort of thing , i struggle to get through 2 1/2 hrs rehearsals once aweek infact its only the buzz that gets me through the same when we do a show ,oh but after i am so drained .,i cant walk in astraight line i cant focas my eyes my heads spinning its like being drunk without the pleasure i am sure everyone out there with ,CFS AND FMS knows what i mean.
i am pushing my self to dance
to a faverite cd of mine every day i do 2 - 10 tracks depending on how rough i feel so far so good its old regge tracks from the trojan label its a good steady beat and i just do what i can ,then stop.i do hurt after but my brain does work better. so fingers crossed i will be able to keep it up, the hardest part is pushing past the fatigue to get started but it can be done. even if you can only do 1 track its increasing your circulation . good luck with your work tina
on the beach and jumping from rock to rock on the jetties. I miss riding my horse that I had to sell when I got sick. I miss having interesting conversations which are really hard now with brain fog. I want people to understand that I'm not faking, not lazy but truly SICK. Whenever I expend the least amount of energy I have to rest for up to 48 hours
before I can try again. I mourn my former self.
Alexandra
And the thing that nobody talks about....sex, from a healthy, vigorous sex life to.....well, we all know.
Mentally.....not being able to verbally express myself in an intelligent matter, struggling to follow a recipe when I used to be able to do 5 things at once, constantly saying "OOPS", the damn post-it notes I have to place everywhere, forgetting the 'favorites' of my children, no longer being capable of holding a multitude of lists in my head and the loss of multi-tasking.
Emotionally, the knowledge that I may never again do some of the things I've lost, that I'll never see the sunrise again at Lake Beauvert because I can't travel by plane or be at a high elevation. Never again feel the pull of the bow across the strings and make sweet music, never dance again, never again be able to host Thanksgiving (I used to make everything from scratch) or decorate my own house for the holidays. The horrible knowledge that when my mother-in-law dies I will not be able to be there for my husband who will need to travel to where she lives when that time comes.
Worst of all, it has changed the way I define myself.
Sarah, I hope that you also include a section in your series on how CFS has changed aspects of our lives for the better. Surprisingly, I have a list for that too....when you're ready.
Best to you,
Genie
Genie, I actually hadn't thought about the ways it's improved my life, but I would love to hear what you have to say! It often feels like a completely evil, purely awful thing, but if you have a silver lining, I would love to hear about it :)
I know it is me, I am HER she is ME. I live it but I also look down upon it happening and feel such pity and sorrow for that poor soul.
I will write soon with my list of "how CFS has made my life better". I have things demanding my attention just now and I want to take time to express myself well.
Thanks for your patience,
Genie
The worst parts... not being able to be a normal teenage girl. Going from a respected, top of the class student to being hated or treated poorly by all of my teachers. How my mom accuses me "Oh, so you can go see your friends, but you can't clean your room?" when I know it's a chronic illness, and that I can't just isolate myself for the rest of my life. Feeling isolated anyways. But we need people who actually support us, and they're all I've got.
I still have basic rights as a human being! And I'm not lazy or selfish! (I'm kind of the opposite...)
The assumptions people make, on that topic. Ugh.
Mostly though, being in high school, the inability to talk coherently at times is killing me, particularly as I have a major crush on this shy boy. Also since my French teacher doesn't believe me that sometimes I don't remember a word of French. Well, besides "Je."
The best parts... starting to get better. (I'll probably post more on this in my own thread, and if there's anyone else who lives in Maine, I know a doctor who is practically a saint...)
Realizing how much my friends cared about me. Well, some of them :)
The terrible, funny irony of many of my situations (top 15 in the country for vocab, but can't remember any of those anymore)
Now that some of the brain fog is lifting... seeing colors again. They're truly beautiful. Just feeling the clothes on my skin. Seeing the world again. I appreciate it so much more. And getting some of my creativity back too. Maybe in another year or so, I'll be able to write again...
I know I can get through anything if I push myself hard enough- but now I also know that sometimes you should limit yourself, and that the world doesn't end when you do.
I've been forced to confront my fear of authority figures as well, and my fear to rely on others. I had to get rid of as much emotional baggage as possible so I could tackle this, and I think that paid off. I dumped the bad boyfriend, made better friends, dropped some of my high-pressure classes, and grew as a person.
Unfortunately, I still lost two years of my life, where I don't remember large chunks. But I think I'm okay with that. I don't know why, but I'm not questioning it.