So i've actually been home sick in bed for the last 3 days - and bored out of my mind. I actually dont like being home sick. I think I figured out why. It is fear. The fear of being stuck in bed unable to get better and get out of bed. This is all cause I was bedridden solidly for 3 months and have had long periods of convalesing. I have Chronic Fatigue Syndrome ...I have written about this before - click here.
I've also realised that i hate taking sick days off of work cause deep down I think that people at work do not believe me. This is all due to the stigma that people dont understand the CFS and think that you can just be better like it is just normal flu. Or they cant understand just how bad it can get. Also haveing had the worst while I was at school always lead to constant comments from fellow students that I must be faking it - and it is amazing how that sticks with you.
I just know from the experience of having it for the last 9/10 years that no one really understands it unless you've had it. And even then it affects people differently. Recently I have found that there is def more support groups and organisations here aimed at us sufferers - well I never found any in Cpt. So lately I've been reading a few of the forums and websites and it really is amazing to me that there are just SO many definitely diagnosed cases that are so similar to mine. There are even terminology that I only used for lack of any actual terminology like "brain fog" and I find that there are people out there using it as well.
I found reading the site both uplifting and depressing. Reading peoples account where they are still in the early days and at the worst was interesting - I just wanted to get ahold of them and tell them that you do come through the worst. But it also reminded me that I have this, there is no doubt. I do have this and will always pretty much have it! I'm so lucky that I'm actually very pysically strong at the moment and it is esp amazing that I have a sport - climbing. So few of us sufferers have this. But I do have to becareful and always remember that if I push things too far when I'm run down I may just push it too far and land up stuck in bed again - and I never want that again.
So while reading through things I came across this semi poem written by a sufferer and it rang true with me (not the suicidal bits - I was never in that state as I was always able to keep my head from going that far)
I've also realised that i hate taking sick days off of work cause deep down I think that people at work do not believe me. This is all due to the stigma that people dont understand the CFS and think that you can just be better like it is just normal flu. Or they cant understand just how bad it can get. Also haveing had the worst while I was at school always lead to constant comments from fellow students that I must be faking it - and it is amazing how that sticks with you.
I just know from the experience of having it for the last 9/10 years that no one really understands it unless you've had it. And even then it affects people differently. Recently I have found that there is def more support groups and organisations here aimed at us sufferers - well I never found any in Cpt. So lately I've been reading a few of the forums and websites and it really is amazing to me that there are just SO many definitely diagnosed cases that are so similar to mine. There are even terminology that I only used for lack of any actual terminology like "brain fog" and I find that there are people out there using it as well.
I found reading the site both uplifting and depressing. Reading peoples account where they are still in the early days and at the worst was interesting - I just wanted to get ahold of them and tell them that you do come through the worst. But it also reminded me that I have this, there is no doubt. I do have this and will always pretty much have it! I'm so lucky that I'm actually very pysically strong at the moment and it is esp amazing that I have a sport - climbing. So few of us sufferers have this. But I do have to becareful and always remember that if I push things too far when I'm run down I may just push it too far and land up stuck in bed again - and I never want that again.
So while reading through things I came across this semi poem written by a sufferer and it rang true with me (not the suicidal bits - I was never in that state as I was always able to keep my head from going that far)
Person with ME
Carol
Who am I?
The mind is such a complex part of human anatomy
How do we start to analyse who we are or who we want to be?
Some two years and eight months ago, I became so very ill
But positive in nature, believed I'd battle it with sheer will
However, this was not to be - my mind and body weak
No control I had of anything, just pain and eyes so bleak
Tests and scans that followed were all surprisingly clear
How could I feel so ill inside, my mind so numb with fear?
The most minimal of tasks were so exhausting to the brain
A phone call or a visitor - plagued me with migraine
I had no life, no function, could not grasp reality
So scared was I, who am I? what will become of me?
No matter who's around you, you always feel alone
How can anyone really help you?
You're in this on your own
I'm not a quiet person, who just muddles through the days
I'm always such a happy thing - the 'life and sole' so they say....
But, my life was shattered instantly when I discovered 'm.e.'
I had no strength to fight it, in a world too dark to see
Why did the sound of summer birds drive me near insane?
A gun to the head - was this the way to take away my pain?
I'd wake up in the morning wishing the day would pass
Then praying for the darkness, and quietness at last
No pills, no cure, no anything, to ease this bane of my life
If I were a dog they'd shoot me - then to a land of 'paradise'
These thoughts I had so many times, because I had no guarantee
Who was to say I'd be well next year - it was really just 'wait and see'
Months and months passed slowly, now I never dare look back
Although on a slow recovery - I'm on a recovery track
Each week is a rollercoaster, not knowing how I will be
Many days in bed like a zombie, yet another day, making tea!
My mind is still a mystery - my memory - what's that?
I forget so many daily things, and repeat the same old chat!
Well, I know I'm still a long way off until I'm fit again
But, now, the days I cope with and never wonder - when?
I'm sure there's many people who relate so much to this
And my message to them all, from my heart, is simply this ....
Don't fight this dreadful illness, but accept and live it through
And with gradual slow activity, your life will return to you
Carol
8 comments:
I have a cousin who has this and no one believed her, all her doctors thought she was faking it too. Did you have that?
I am highly uninformed but have heard of Chronic Fatigue. How does it start or how do you get it? Shame, I feel for you, it can't be easy. I will go read your post about it and learn something.
@Po - yeah it was really hard to make any headway when people dont believe you. Esp when you cant fully discribe what it feels like. I had a hard time with docs for about 8 months when they had put me on 10 different courses of anti biotics by end. And was even sent to a physchirst (sp?) Luckily I found an amazing doc who is the only doctor in SA that specializes in fatigue disorders.
@Kitty cat - There are a few ways this starts. Basically it is a complication of a viral infection. Mine started with Glandular fever and I just did get better and had bout after bout of tonsilitis. The experts still argue about the finer points of it all. But there are strong school of thought that explain it as the body attacking itself because it still thinks it is infected - but this does cause serious results even though there is no "infection" so to speak. this is why it can be so frustrating as test all come back clear alot of the time.
How interesting to read - thank you for sharing this with us. It must be such a difficult battle and how admirable and special that you can offer other people support.
I often find that people have little empathy because they don't understand the severity of someone's condition. Personally I have a bad back, a bit of a cliche as most people have aches and pains, I went through a stage that my back pain would get so bad I would throw up - people also thought I was faking it and/or overeacting.
@benny - thanks for your words! It is difficult for me to write about - But i seriously do feel like I need to share it with people. Am also planning on becoming more involved with the support groups too. Maybe I can help others get through the worst.
Sorry to hear about your back problems and I know exactly what you are saying about people - why do they have to be like that!
midnite gem: I remember reading an article in a climbing mag about a guy who has this too. I wish I could remember where I read it, but yeah, you are not alone, even among the climbers!
@po - wow that is so cool - i'll have a look for that climber! It is actually amazing that I can be involved in such a physical activity - i never thought i would be able to. So i think that is why Climbing means so much to me. Plus i think it is actually a perfect sport of it. Its full body strengthing and you set your own pace and own goals. It is very personal.
Hi, Hope you feel well today. I felt exactly like you and really, could not see the light in the end of the tunal.Then I went to Brazil for 3 months with my husband. I think the weather over ther was quite useful for my recovery. After Brazil I came to live in Spain in a samll town. sunny days and clean air, make me feel like a different person . I spent 9 years in Uk, 3 in London. The weather in London is thought for people who are already strugling with their energy level. It is too intense and too poluted over there. I strogly recomend you a break in a sunny and relaxed place. Good luck!
Post a Comment