Sunday, 1 September 2013

The human spirit can endure in sickness, but a crushed spirit who can bear?

I said before that I would write about each of the symptoms of CFS/ME but for now I shall quote Action for M.E. (a charity who support sufferers of CFS/ME):

Moderate“People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.”


This is an insidious disease. Since May 2009, just after I completed my G.C.S.E.s, I knew something wasn't right. Unfortunately, my G.P. disagreed. But to be fair, my symptoms could mostly be excused or explained away - I had just finished doing about 15 exams and worked pretty hard. The symptoms never quite went away but hey, everybody gets tired, right?

Slowly, the symptoms got worse to the point where by the end of my school life I now know I had mild CFS/ME. I had to quit my Saturday job, quit my gymnastics club, and basically quit all social activities. Despite only having 3 hours of lessons a day and doing very little of my allotted homework I felt like death each day.

But hey, this was year 13, everyone was tired, right?

And so, with only a small amount of thought for my health, I started university, and loved it. I was studying a really interesting subject, I had made some fantastic friends and I was able to go to church more often than ever. Until the inevitable happened.

I crashed. Spectacularly.

Literally overnight, I went from feeling more or less fine to the moderate symptoms described above. Note the 'moderate' - yes, it could be a whole lot worse, but it could be whole lot better. By the time I got home for the Easter holiday after being ill for about 8 weeks and still pushing to keep up with university, I was on the verge of severe CFS/ME and it wasn't pretty.

Severe“People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise."
(again from Action for M.E.)

And so for that 8 weeks, which must have been the toughest 8 weeks of my entire life, I was in some little painful bubble of coming to terms with my new disability and the minute-by-minute struggle of independent living. My friends were there somewhere with their hurts and cares and joys but they were secondary to my struggles. 

I have the utmost respect for people who are in some crisis or even really good times, who still have genuine concern for others' problems. They are better people than I. All I could see was my loss.

I desperately wanted to join in with what my friends were doing - eating together, watching films together, shopping together - but my body was screaming at me constantly to sleep, while simultaneously making sleep impossible. I am sorry for not being there for them, I truly am, but at the same time I feel some anger that none of them were truly there for me either.

I also feel sometimes that that anger is unjustified. I don't ask for help because some stupid part of me assumes that I can do things alone, and that getting upset in front of people is weak. What I needed in terms of support was way out of their league and what I could expect of a friend.

I hope these amazing friends that I have made will forgive me, and be able to move on from this. Hopefully I will be able to get a carer, but I'm not too hopeful as there isn't enough money to help people like me, whose pain is first acknowledged with a patronising air, and then second ignored with superiority.

"The National Institute for Health and Clinical Excellence (NICE) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions." (Again, Action for M.E.)

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