Here I am again, in the middle of a phase of 'screwed up body clock'. I've been asleep for most of the day and now it's bed time I can't sleep! It's a pattern I fall into all to often, and find very hard to break. It normally comes after a period of not being able to sleep at all, or the complete opposite - not being able to wake up. It is SO frustrating and I have spoken to other M.E. &Fibromyalgia sufferers who have similar problems with their body clock. It also makes me feel very unreliable and planning things can be really tough.
Let me tell you a little bit more about myself. I am a woman (obviously), too old for a Club 18-30 holiday but not old enough for a Saga one either! I'm single with no dependants and live on my own somewhere in Central England. I was a workaholic/perfectionist - just like many people in my position - then one day I reached the edge of the cliff and I fell off. I had a nervous & physical breakdown and have been struggling to get back on an even keel ever since. That was 10 years ago. 10 years!! Bloody hell!! That is really very scary.
People diagnosed with M.E. and/or Fibromyalgia often feel a huge sense of failure, that they are a disappointment to family & friends and that they aren't any use any more. I can certainly tick those boxes! The truth is that more than likely they (like me) were very ambitious, hard working (probably workaholic), harder on themselves than they ever were with other people - constantly striving to be the best, but never quite believing that they have acheived that. From those lofty ideals, the M.E./Fibro crash hits much harder, so the depressive lows are even harder to climb out of. It's taken a lot of therapy for me to realise and understand all this.
For me personally, I have lost a lot of friends since I have been ill - even my (so-called) best friend. Everyone elses's lives carry on as normal whilst I'm stuck up to my waist in a big gooey bog of fatigue, pain & depression. I became convinced that I was the problem, that I was too miserable & boring for anyone to bother with, so I withdrew from my social circles even more. My therapist spends many hours telling me that it's others who have the problem not me - I'd like to be able to believe that, but as any other sufferer (or Spoonie as we're called on Twitter) will tell you, your self confidence takes such a knock that it's easier to blame yourself for everything. That's when the depression takes control, and believe me there are many, many spoonies who have to battle depression on top of everything else.
I hate not being able to do all the things I used to, though I'm not sure how the hell I fitted everything in! Pacing is the mantra preached by all health professionals involved with M.E. in particular. Their intentions are good and so is the theory, but it's much harder to put it into practise. The problem is that I still judge myself by the standards I had set before I became ill, and being a perfectionist just adds to the burden. If I start something I have to finish it, so pacing becomes a barrier to that. I know I'm not the only one. We need help to re-program our whole way of thinking before pacing can be a successful tool for us. But I consider myself to be very lucky. I have had access to psychologists and therapists that I'm sure many spoonies have been denied - it really is a pot luck situation. There are some who believe that those who shout loudest get heard quicker - sadly I believe this is true. My Mum shouted loud and wouldn't give up until we had some answers.
So, as I add to this blog I hope that I can pass on some of the valuable advice that I've received and highlight the stuff that didn't work for me. Maybe this is another form of therapy for me, trying to help others. So far the most valuable lesson I have learned is that talking to others in the same situation is vital for keeping you sane and not believing that you are a freak. You are not a freak. You are a person being tested to their limits, and all Spoonies should stick together and support each other.
'Til the next time, take care dear Spoonies.
** I have signed up to Twitter. If anyone wants to follow me or be followed then my Twitter ID is @AchingGrace
I hope to be up and running on Facebook very soon
No comments:
Post a Comment