Sunday, 25 August 2013

Groundhog day

Last Sunday I was supposed to go to the Christening of my friends son but unfortunately I couldn't go, I could barely get out of bed. Obviously being all too familiar with the ways of ME and fibromyalgia I always knew that there woud be a chance of not being able to go but I had put all the plans in place so that I could go if I was well enough. The military operation that is going anywhere with ME. It' much like going out with a baby, where you need a bag like Mary Poppins's. I had asked about whether I could get my wheelchair into the church and the venue and had asked whether my Mum could come as well to help me get around and that way I could leave easily if I got too tired or was in too much pain and of course not have to ask someone else to wheel me to the bathroom. As well as the list of things that I would need to take with me, the small pharmacy and extra clothes in case my tempreture dropped and baby wipes in case I started sweating. Anyhow it wasn't to be, which wasn't too much of a surprise knowing ME as I do.

However ever since I have been feeling rather deflated. It seems to have signalled a change in my attitude somehow. A sort of begruding acceptance of the things that I will miss out on in future. A psychologist would call it catostrophizing. When you are looking to the future and becoming anxious at what life will hold and only seeing the bad, an extension of the way you are feeling now for the forseeable future. I guess that that is what I am feeling. I'm just caught in a rut I think and it's quite scary. I can only see the long long road ahead of nothingness. Of a life where the most exciting thing that happens that's not in a book, on tv or in a film, is to make it downstairs. With the monotony of wearing pyjamas and taking tablet after tablet after tablet. So as you can see I haven't been in the best of moods this week, even breaking into tears at one point with the overwhelming thoughts about the longevity of this illness.

I know that the condition can have it's ups and downs, times when you will feel better than others and flares where you can do very little but there is never a day where you feel normal, that you can somehow forget that you have ME or Fibro. And that is having an effect on me. It feels like a huge weight to bear, almost too much. Non of this is me. I am an ambitious young woman, who wants so much more out of life. I want to be social and to do more travelling and exploring. Earn my own money and just generally be more independent. Basically I want to feel like I have the chance of living the life that a woman in her twenties should be. Maybe not exactly as it was in the past or the direction that my life was heading in but at least a life where everything doesn't revolve around ME and Fibro and only knowing the time by what medication you're taking.

It's so difficult to think that this is what life could be like for the forseeable. I know that I shouldn't think like that it's not productive but it can be very hard not too. Especially when things seem to be getting worse, with the fibromyalgia diagnosis as well now. There is always the social aspect as well, as I have said before society will only allow you to be ill for so long before it moves along. When you have ME you don't get get well soon or thinking of you cards, not even if you have to hospitalized. Or people will say "when you get yourself sorted we'll get out." Well in that case we're all going to be waiting a long time. Or they expect you to go to them, which is yet more military style planning and the use of many more spoons. Somehow you and ME become entwined and it becomes you and you become it. And I hate that! I am tired of feeling more ME ( as in the condition) than myself.

But it's not just about the effect it's having on my life. My family are in this with me too, especially my parents. Whilst this truely is a blessing and I feel incredibley lucky to have parents like mine I also hate what I'm putting them through. At times it is like having a baby in the house I need so much care at times and I feel bad for needing them as I do. For impacting the way they live their lives and them needing to be more orientated around me.

I don't know I'm just in a rut at the moment. The fact that there is very little let up from the symptoms and social impacts of the condition and no known end in sight. I'm sure this a common feeling for many sufferers and hopefully soon I shall be back to just trying to live from moment to moment and making the most of them.

Anyone out there have any advise? Or feel the same?  Hope I haven't depressed you all.

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