Monday, 23 April 2012

My Story: Coping with CFS / ME

The back story

Every person who has CFS/ME will be effected differently. Initially I was chemically poisoned as a child and when I was 19 I was diagnosed with having CFS/ME by my doctor who instantly told me I was no longer fit for work.

I did not realise that living every day in agony and being so tired by doing little things such as doing the dishes was not normal. It was when I moved out of my parents house when the illness really started effecting me badly, simply because I had more to do, and couldn't do it without help.

What does M.E. Stand for?

M.E stands for Myalgic Encephalomyelitis however it is more commonly referred to as CFS which means Chronic Fatigue Syndrome.

How ME/CFS effects me on a daily basis. 

1. The energy of your battery starts at half full and will only go down throughout the day, unlike other people who start the day with a full battery. So basically you're tired before you even begin the day.

2. Long Sleep is un-refreshing, and you feel just as tired when you wake up, as when you went to bed. However a couple of hours sleep seems to be more refreshing that 12 hours of sleep which can be easily done.

3. Your muscles ache all the time, some days its not as bad, but most of the time it feels like there is a vice around all your muscles.

4. You become unsteady on your feet when going down stairs, I've slipped twice breaking a different toe on each occasion, but the pain of a broken toe was not noticeable compared to the daily muscle agony.

5. Concentration is near non-existent its difficult to focus on the things you have to do because you're so tired all the time.

6. Housework is a necessity to do daily, however its extremely tiring and painful to do,  but it has to be done, and takes all day to do because I have to keep stopping to have a break before I over do it.

7. I made the mistake one day of taking our recently passed dog for two 10 minute walks in one day, it was a good day, i felt fine, however that evening my muscles all tensed up and I passed out, I slept for 24 hours, and 6 days after I could hardly move because of the agony, and when I managed to get up, I was walking like the tin man because my muscles were all so tense.

8. I used to have guinea pigs and one day I had to treat  the cage with "Insecticidal Spray" to remove the bugs from the cage to keep the piggies healthy, however by doing so, and being chemically poisoned as a child, I had a really bad reaction with the chemicals, which also resulted in my muscles bulging, and me being in agony. I had to unfortunately get rid of them as I did not have the energy to keep on top of cleaning their large cage daily.

Getting support when you have ME/CFS and cannot work on order of your doctor.

Well unfortunately I have had bad experiences with the government, my doctor clearly says I am not fit for work and yet the government does not recognise CFS/ME as a debilitating illness which it obviously is. The government will not support me nor can I work due to being too sick as agreed with my doctor... how exactly am I supposed to support myself? Unfortunately I have to rely on my partner for our income.


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