What is it actually like to have a life changing illness?

It's so very hard to describe having an illness that "controls" your life, and makes it difficult to live life as you want to, in fact to live life as you used to, before you became ill.  In my youth I was lucky to be fit and healthy, fit enough to ride horses every day, to work with them, run when I wanted to, even go swimming on my day off from my 10-12 hour day.  I yearn for those days now.  As a mum, I have loads of things I must do every day.  And those things most people would take for granted.  Loading the washing machine, cleaning the dishes, cooking meals, making lunches, taking the children to school all take so much effort and energy, and these are just the absolute essentials! What about cleaning the house, hoovering, looking after the garden, shopping for food, looking after finances?  Even filling out a form can be exhausting, where it never was before. 

I feel so much sadness and loss for the person I used to be.  I used to be able to really walk quickly, to play with my kids, to go and do the shopping without worrying about if I'd have any energy left to finish the day.  Now I have to walk slowly and rest inbetween every task.  If anything unexpected comes along I have to dig deep and steal from tomorrow, knowing that I will pay dearly for it.

The Spoon Theory describes it so so well.  When I first read this I cried, and I still do on reading it again.  The author, Christine, has captured perfectly how it feels.  But this one paragraph in particular really resonates for me 

"Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”." - See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.Ii36lRsC.dpuf

I'm really feeling it at the moment, holiday hangover, together with the stresses of settling both children into their new schools, and back into the routine.  The weather has suddenly changed to very damp and colder, and I'm in a great deal more pain.  I very much enjoyed the summer, the warmth on my skin and mostly not needing blankets and loads of layers.  I had to use my stick again yesterday and I am stiff and struggling to move today.  Roll on next summer (or maybe a lottery win so I could spend winters somewhere warm! - I'll have to start playing to increase my chances above zero though lol)

CBT and Graded Exercise Therapy (GET)

As a psychology graduate I have been interested and highly sceptical of the effects of CBT and GET on ME/Fibro.  Particularly as I've noticed mood has very little or no impact on my ME.  I can be in a very positive, happy and excited mood, but that has little or no effect on my level of pain.  If anything it makes my pain more obvious, as I'm less likely to rest if I have things I need to do.  

Generally when I'm in that sort of mood its because I'm seeing someone or doing something excited, like our recent trip to Natural Mamas camp.  My ME/Fibro was atrocious on the day we arrived.  Every effort I put in to setting up camp was a complete battle.  Both mentally and physically, I had a lot of brain fog which impairs my ability to think (and communicate) on arrival day.  All this was despite me being in a happy and positive mood.  

I don't understand how learning to think differently about my ME (which is essentially what CBT or cognitive behavioural therapy attempts to achieve) will affect my pain and indeed health.  I don't think my ME is due to an error in processing, and CBT in my opinion addresses errors in processing.  That's why it is successful in treating anxiety which is due to our interpretation of the world around us.  I don't personally believe that's how ME works.  Anyway.  In this case too much knowledge may be a bad thing, and I might be proved wrong.  This report seems to suggest that I shouldn't get my hopes of improvement too high though.

I have added a couple of links to research websites today as well.  Take a look, some of the information on there is fascinating (worth directing your GP too as well)