living with the downs of chronic illness

October 14, 2009

This autumn I’ve been struggling big time with living with chronic illness. It’s been 15 years since I had my first serious relapse and 10 since this last one started. I thought I had acceptance and coping down to a T (ok a 95%T). Tonight I’m close to tears again and I thought  I would use the opportunity to share a little-it’s hard to write about the bad times when they’re over…

I have M.E. visual field loss and a slight left sided weakness.

It’s not so much coping with these that I am struggling with, but their impact on my life.  I cannot work and as last year’s forray into part-time university proves, I cannot study out of the house either. OU exists, but is pricey for those not on means tested benefits and to be honest, especially their level 1 courses do not appeal. I’m also someone who likes to have a reason for learning and learn better from people than from books.

Good day’s are marked by being showered, dressed and teeth brushed and ideally getting downstairs for a bit during the day. Simon does 98% of everything from meal prep, to cleaning. Laundry has been one of my highlights this summer. Getting outside to hang it up and it being dry at the end of the day, feels earthly, wholesome-just good.

Talking of seasons, winter is generally my worst time health wise, with autumn seeing a decline and spring seeing a gradual slight improvement. Last year’s uni trial, which I had to abandon in November took me until May time ish to recover from…

Logically I know that I contribute to the relationship and running of our home, by just being. Taking care of finances, coming up with concoction ideas that keep our love of home cooked food alive.

At these recent down times though, when I am so shattered that the noise of kids playing outside sends my nervous system into sensory overload, I struggle emotionally. The scars of lost frienships become raw, the complete and utter isolation becomes overwhelming, the realisation about how much Simon does-yet there is no ability to change. I become angry and frustrated-all signs of NOT coping with being ill.

I recently googled coping with chronic illness and found an interesting article where she says that a Ployanna like existance is not real and that intermittent depression is normal and to be expected. Living in the acceptance stage takes daily work as it’s so different to our previous existance.

My “alter psyche” as this person calls our healthy previous us, would have studied medicine. Enjoyed the gym, cycling, socialising… I fully accept that my career aspirations will not occur. I also accept that the other won’t exist the way they do for healthy people. I know some people recover from ME and there are always “amazing stories” but 15 years is more than half of my life and wishing for “when’s” is something I realised was destructive a long time ago. Life in that state becomes markers of “still ill” instead of enjoying life along the way.

I love my knitting, music and reading when I can, food, family… The majority of the time I’m smileysair.

I do not know if it is the anniversary of uni starting, or a new acquaintance using me as an emotional dumping ground or autumn’s health decline that has got me into this. No idea. I just try and let the sadness out instead of berating myself for not coping and deal with tomorrow when it comes.


  1. I hear you. Hugs from me.

    • thank you! Been thinking of you the past few weeks… (or hasn’t it been that long?) xx

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