Cloudy with a small chance of improvement

I have been inspired to write this post after reading this one here. Although I have written a little about my experience of chronic fatigue syndrome I don’t really like doing so because I worry that you, dear reader, will think I am moaning or whinging. I’ve also avoided it as I think others say it so much more succinctly or manage to encapsulate my experience so well, why bother saying it again?
However, when I started this blog I wanted to ‘tell it like it is’ without sugar coating my life. Plus I don’t really think anyone else is more qualified to tell you about how chronic fatigue has impacted upon my life than, ahem, me.
So here goes (and I promise I will return to more fibre-y topics in my next post).
Before we moved to Caithness, about 3 1/2 years ago, I spent my time working in a large and dynamic substance misuse team. Alongside this I was studying for my MA, running a private psychotherapy practice as well as seeing a handful of voluntary clients. At weekends we either had our three grand kids or went hillwalking. I went to the gym three times weekly, spent time with our family and cared for (badly at times) my teenage son. When I wasn’t busy doing all of this I was knitting, gardening or cooking and holidays were spent flinging ourselves up mountains, usually in the depths of Winter. My then manager described me as ‘a grafter’, my step-mother used to say I ‘worked like stink’ (whatever that means!).
As I have since learned, this is a fairly typical background for someone who is later diagnosed with CFS.
After moving to the Far North, Mr Knittingkitten and I were looking forward to some quieter moments. We were to be given far more of those than we had bargained on.
Officially I have had CFS two years now; I can see symptoms from at least three years. I started to feel lazier and stopped hillwalking and gained weight. As the tiredness increased I assumed that was why – not so fit and overweight. So the first step was to shift some pounds, I lost about 7lbs and felt marginally better but noticed my joints were aching at the end of the day. This I put down to ‘old age’ (at this point I was 39!). My sleep was poor and the migraines I have had for as long as I can remember suddenly worsened quite dramatically.
My job can be stressful and emotionally draining and I was feeling overwhelmed by it. Each week felt harder and harder to get through; I was quite literally giving myself a talking to every morning just to get going. One thing I couldn’t understand though was working in rural Caithness is infinitely less stressful than in a busy city centre clinic. My work here is more rewarding as I don’t feel as though I am merely doling out methadone but supporting people to make meaningful changes. So I couldn’t work out why I felt so stressed. With hindsight I now think that I just didn’t have the energy to manage any any feeling, whether comfortable or uncomfortable.
After taking a weeks leave I was horrified to realise I felt worse, not better and went back to dragging myself through each day, living for the weekend and the hope that a couple of days rest would make me feel better until finally I gave up fighting. My GP took one look at me and signed me off work for three weeks. I haven’t been able to return to full-time work since.
Since then life has been a journey of acceptance. Chronic ill health is not something I was prepared for mentally, spiritually or emotionally. The frustrating thing about living with CFS is that I have no idea how I will be feeling from one day to the next. I know that if I ‘over do it’ (my understanding of this has changed significantly), I will crash. What I can’t predict is how long for. I also crash for no apparent reason which is the most frustrating thing. The trigger for this post is that I have been off work again since August after experiencing a ‘relapse’. It has taken me quite a while to get back up to my pre-relapse level of functioning (this is being able to gently potter about at home, knit -although complex patterns continue to exhaust me, weave, spin, cook and manage the odd trip to Tesco). The last couple of days, however, have left me barely able to walk again following a house clean for the New Year. Today a trip to Wick for an hour left me unable to hold up my head or talk.
I was hoping to be able to return to work for a few hours soon, this is now looking less likely. If I lose my job, we lose our house , no two ways about it. I know that, according to research, the fact I have had CFS for over two years now means that full recovery is unlikely. I also know that I am damned if it will stop me from living.
Chronic health issues affect hundreds of thousands of people every day. I never this would affect me, I hope one doesn’t affect you.


4 thoughts on “Cloudy with a small chance of improvement

  1. Ruth Kirk

    So well-described, and so true! To sound a hopeful note, the longer you have ME, the more skilful you will get at managing it to even out the crashes XXXXXX

  2. Anne Davis

    Well said! I’m tearful again!
    You are getting better at managing your M.E but more acceptance of limitations required methinks.
    God will not take your little corner of heaven away from you. I don’t know how or when but it will work out. xxxxxx


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