The story of my CFS/ME

I've just cut and pasted this post of mine from another CFS site online, its several years old.

The start of the CFS

- I was a single parent of two young girls, one who is disabled (she's got a problem like spina bifia). Doing my second full time year at Naturopathy collage. I kept getting what doctors would say was just virus's eg the flu. I'd get temps and a very sore throat, glands would go up (all which the doctors could note) and I'd feel like crap. Every time I was put under pressure at collage eg an assignment due to soon.. I'd develop "a virus" and get very sick. Coming up to exams I got so so sick and kept having to delay my exams.

I started the next year of collage, only doing some subjects as I'd only managed to do half of my exams, while still planning and trying to do the rest of my exams. I kept pushing myself trying to do it and get throu but just got sicker and sicker. I ended up getting to the stage where I didnt do anything except go to college and go home straight to bed and sleep, I couldnt even visit friends no more as I had no energy and was far too sick to do so.

I ended up having to take too many days off of college very ill so got behind, I ended up having no choice but to defer college..

Somewhere at this point of time, quite a while after giving up with the doctors just saying I had a virus or the flu, (I went to a lot of different doctors.....NO ONE could flu that often!!!) and having a heap of tests which really found nothing wrong in the tests but at one point where the liver enzymes in my blood were too high or something and the doctor got concerned that i may of had hepatitis, saying my liver was breaking down or something.. but after a while things were okay again).

I went to another clinic, (Ive tried finding my old records but cant remember what clinic it was) and a doctor there did more tests in which nothing was found and ended up telling me I had CFS and that nothing could be done for it, so at that point I gave up with doctors completely as there was nothing they could do. (This would of been back in 1997)

I was basically from there completely bedridden for 9 mths with severe CFS and what I know would of been FM. The only times I left my bed, once I dropped out of college, was to take my daughters to medical appointments (but after a while I couldnt even do that) and to go to the toilet. My eldest daughter who would of been about 9 yrs took over looking after me. She cleaned up after herself and my other child, cooked for us all, did the washing, house cleaned etc. I was too sick to even get up and make meals. I was lucky to be able to stand a lot of the time. At times I couldnt get out of bed.

At my worst.. my legs were too weak to be able to hold my weight..and i'd roll/fall out of bed and use the potty I started having to keep there. At times I was too weak after that, the effort of just sitting and using the potty, that I'd end up laying on the floor by it.. unable to pull myself back up onto the bed, I'd have to lay there for hrs, to weak to do anything else. If the water bottles got all drunk.. I'd have to wait thirsty until my daughter got home from school to ask her to refill it for me. I used to drink a lot.

This probably sounds weird but my weakness got so bad that it was a struggle even for me to move a finger at times and hard to feed myself and to chew.. just cause every part of me was so so weak.

There was a point of time, (I dont know how long.. weeks I assume, during my bedridden time the days would just flow together and I'd just sleep nearly all the time. There was times where I slept for 19 hrs straight!!! without waking at all for food or drink, I was that exhausted and barely conscious when I awoke. It got to the point where I had to be asked to be woken up once a day for dinner as I wouldnt wake otherwise and was missing too many meals). Light was hurting my eyes so I had the blinds kept shut and the room dark... I was too sick to watch anything out of my window anyway.

Too sick to watch TV. (I felt too unwell, I couldnt focus on it and follow what has happening and it hurt my head) . I'd have my daughter send any of my friends who showed up away as I didnt have the energy for them . At times I could hardly communicate with anyone.. someone talking to me was hard as I couldnt focus and struggled at times to understand things, to make sense of language. Noise hurt my head. During this whole time I was very feverish, sometimes running with sweat. My temperature for about 9 mths was usually in the 39 degree celicus ranges.

I had a ton of pain too when awake...my whole body ached.. every part of me hurt.. all my muscles ached like terrible flu and even worst was the pain in my bones...my bones and their insides hurt severely with a degree of pain only one who's experienced it would know. Fortunetely cause of the CFS.. and the severity of my tiredness and the degree of exhaustion I felt... I had trouble staying awake, it was impossible for me to stay awake.. even with that severe pain. I quite often lost consciousness.

When I was awake thou, it was torture, it really hurt to lay still (my body touching the bed hurt it and where my body touched other body parts hurt) and it hurt even more to move, even just a little. I'd lay like frozen on my bed trying not to move but needing to move too.....it was hard to keep my legs still as I had a need to move them and felt a need to move my body if I could.

I used to just cry in pain a lot until I couldnt cry no more. It was hard to cry thou.. it took an effort to cry so something I tried not to do. Often I'd have silent tears just running from my eyes.. too weak to even cry properly.
..................................................................................

Over time I improved from all that.. I'd say I had about a 5-10% improvement per year from that, once I left the bedridden and then housebound point. I improved cause I learnt to pace myself and when I needed to stop whatever I was doing and rest. Rest (sometimes lots of it) helps me more than anything else does. by 2005 I'd even got myself to a point where I was well enough that I was working full time and doing a heap of over time too!!!!, just by my pacing myself to good health by doing and resting constantly.

Then I came under stress by government dept.. and relapsed, then replased a second time, early last year.

After 10 yrs, I know my illness well now and can usually clearly tell when Im starting to over do something or push myself too much. I also have CFS signs come in when Im starting to over do things eg sore throat or a feeling of unwellness usually happens first. The signs get worst and more of them eg weakness, the more I push myself and of cause then the tiredness and then exhaustion hits. The worst I allow things to become, the more time it takes me to recover from them.

I know that pushing myself too much easily could end up with me completely bedridden again for a very long time and needing care, I know I was lucky not to have died with the severity I had this before. If it ever relapse that bad again, I'd be going into a home as my children now days wouldnt be able to or willing to take care of me. They have their own lives nowdays. (my youngest lives with her father as Im unable to take care of her)

Comments

Thanks for sharing your story Tania. I can relate to your weakness. I quit blow drying my hair along time ago because I could not hold my arm up. Just last night I had a difficult time lifting my fork to my mouth. That is just sooo wrong. I am glad you have improved and hope we can get some real answers soon so none of us have to be fearful of relapses.
 
the FEAR...Dearest Lord I hate the FEAR! i want to do sooooooooo much....! so very few days i can do much of anything...and behind even that...we have to be afraid to try! it's so unfair an illness....my thoughts and prayers go out to you,and for a treatment or cure for us all
 

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