The difficult second post!

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

Where do I start?

Hello. My name is Grace - Grace Lavender. I have been thinking about writing a blog for a long time and have finally plucked up the courage to do it! My blog is called 'The Complicated Patient' and anyone who has had a similar time to me will fully understand why.

Let me explain. I have been diagnosed with M.E. and Fibromyalgia for a few years now, and like many people getting those diagnoses was a long and complicated process. Through my blog I will hopefully explain to the un-initiated what these conditions are & how they control/affect your life. I also hope I will get to talk to others in the same boat and share helpful tips on coping with the every day through to extreme situations. One major problem with both of these conditions is that the patient often becomes isolated from friends (and sometimes family) and loneliness is a big problem. It is for me - so why not use the power of the internet to reach out and find people to talk to and share stories?

Many people get diagnosed with one or the other, but I believe there is a great deal of common ground between M.E. & Fibromyalgia. I'm sure that many who have been diagnosed with one, probably suffer from both. I was asked by a fellow M.E. sufferer once what the difference is? The simplest way of describing it is to say that M.E. is a lot of fatigue with some pain and Fibromyalgia is a lot of pain with some fatigue. If like me you have a lot of both then you may suffer from both. As I say that's a VERY simplistic view and both illnesses have many 'sub-conditions' as it were.

Surviving these illnesses (or surfing the wave as I often call it) can be very hard, but in my experience trying to keep your sense of humour is vital .... or you'll end up in a straight jacket!! I hope that writing about my experiences will also let my humour stretch it's legs and have a bit of a workout. Pacing - as any M.E. patient who has seen a psychologist will know - is the key to survival. I am very aware of this as I sit typing with 1001 thoughts buzzing around my addled brain all screaming for attention .... so, it's almost time for a break.

I am going to attempt to get myself signed up to Facebook & Twitter to try and attract some fellow patients and bloggers, so we can help each other out on our journey to 'physical & mental stability' - blimey that sounds VERY serious doesn't it? So for now I shall sign off, but in my next post I shall try and tell you a bit more about my story. 'Til the next time ...