Monthly Archives: August 2012

A good way to summarise my time at home so far would be to quote the famous words from a song from the show Annie:

Just thinkin’ about tomorrow
Clears away the cobwebs,
And the sorrow
‘Til there’s none!
When I’m stuck with a day
That’s gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh
The sun’ll come out
Tomorrow
So ya gotta hang on
‘Til tomorrow

No I’m not referring to the weather, but my ability to work for my exam I intend to take later this month. Despite the weeks of rest I’ve had since I began writing this blog, I have only been able to work on a few rare days. The suitcase of notes and books I brought here with me sits gaining dust, and I find myself still saying, “tomorrow I’ll be able to begin revising”. My exam is now only two weeks away, and I am at the height of my frustration.

I know many people would be quick to advise and criticise me. The usual remarks are that I should have gone out less or that I should try harder. I still find it unbelievable that after all I have achieved academically people still feel they know better, having had no experience of this illness. Concentrating on degree level work is much more demanding than the concentration required to write this blog post or watch a film. And, in regards to rest, yes, when I do go out I do get very unwell and have to rest, but in case it hasn’t become plainly obvious, M.E. does improve on rest. I choose to have some semblence of a life, if going out or seeing people once or twice a week is too much then I can wave goodbye to my sanity. It’s not as though I’ve gone out to clubs or attended endless parties, excluding that one or two weeks where I had a packed diary, I have barely done anything socially. The bed rock of the issue is that my illness does not improve by my resting. It reduces certain symptoms when I rest and it makes me rest, but it’s impossible for a long sleep to improve my condition, except if I’m recovering from having over done it. 

M.E. or CFS is caused by the body’s inability to rest properly, that’s a medical fact. My body never has a good night’s sleep. All I can do is wait for my body to improve and do the best I can to help facilitate that through pacing myself. I am always dumbfounded when I meet people who think that they could possibly have the answer that no research or doctor has ever thought of- trying to do something, perhaps begin with dusting or hoovering. As if I don’t want to do that every single day, the desire I have to walk when I wake up in the morning is so strong. Sometimes that advice is given out of genuine concern, but often it is given out of the idea that there really is nothing wrong with me. When you drill down to the fundamentals, it is arrogance that makes a person think they could know better than my doctor, and that is their issue, not mine. I try to ignore these kind of people, I am trying to grow thicker skinned.

But, back to the real point of this blog post. I will continue to be always waiting on tomorrow. Doing my best to help my body today, in the hope that tomorrow will bring more energy.

Love Katie x

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Posted by chronickatie in Fibromyalgia, M.E./CFS, ME awareness, University Tags: ability to work, Annie, awareness, CFS, chronic illness, degree level work, energy, exams, fibromyalgia, frustration, Health, invisible illness, lazy, M.E., rest, revision, sleep, sleep disorder, university, words from a song