It has been a bit of a topsy turvy few weeks for me! I have finally started to get things sorted with respect to my illness, with the first step of moving doctors! My old surgery was very large, but very impersonal, it was almost impossible to get an appointment and I always felt like the doctors were very dismissive of me. What I would give to be able to give them Fibromyalgia for the day! I would love to see them struggling to put their feet on the floor because of the pain shooting up their legs to their hips, trying to shower but the water on their skin actually feels like it is burning because of the pain, feeling wiped out after the shower and having to sit for 20 minutes before they can even think about getting dressed, trying to get downstairs but having to sit on their bum because the pressure on their knees is too much and brings them to tears - and all this is before 10 in the morning! What would they do, how would they cope with it, and how on earth would they be able to go to work every day when a simple task like a shower can take anything from half an hour to two hours! Gives people food for thought that simple everyday tasks are like climbing a mountain for a person with Fibro!
My lovely friend Debs Towers-Best sent me an article she had found that was written by someone who had worked with people with Fibro, and in it he stated that often people are diagnosed with Fibro within two years of a major trauma in their life! This makes sense for me, because I was diagnosed with it just 14 months after the death of my beloved mum, and the subsequent fall out with my family! It is incredible really that I must have had this illness for about a year before I realised there was anything wrong! So many of the things mentioned in this article fitted with how I am - the longing for chocolate, something I never had before, because apparently you crave sweet things, the intake of too much caffeine, mainly because all I want to do is sleep, and not eating properly! Most of the time I have no appetite and it is too much of an effort to make food! The other one, which I do not have a problem with, is drinking plenty of water, I drink at least 2 litres a day, as I am constantly thirsty!
I have an appointment at my new doctors on Monday and I am going to sit over the weekend and write out a list of things I want to mention to him. My symptoms have escalated of late, and I am finding that the pain relief is only lasting about an hour, after that it gradually returns and I have to spend a couple of hours sitting rocking back and forth waiting for the 4 hours to be up so I can take some more! Not a good way to live!
I have also received the paperwork from the court telling me that there is a 40 week - yes 9 months - wait to get my tribunal heard because of the backlog! It beggars belief that I am going to have this hanging over me for 9 months, and all the time I have no doubt I will be deteriorating because stress makes this illness worse!
Of all the symptoms this illness has, the worst one for me is the loss of short term memory, it drives me crazy that I cannot get myself organised in any way, everything is so muddled in my head, and often I can't even say what I want to say because the words just won't come to me! What a carry on!
On the other side of the coin I sat today and read about two lady police officers who were gunned down and killed earlier this week! The sadness I felt at the tragic loss of two ladies just doing their jobs, the awful way their families must be feeling that they would never see them again, and it really put things into perspective. I may be in pain, but at least I am alive, but then I also thought, but what sort of life is it? I never make plans to go anywhere because I know that 90% of the time I will cancel, I hardly leave the house on my own because I am scared that I will either fall over or I will get some sort of spasm and not be able to move, and worst of all I hate going out because when I walk the pain is so bad that I am almost in tears!
But I want to end this blog on a happy note, this weekend is my birthday (well Monday!!) and I will be 55! The realisation hit me the other day that I will be nearer to 60 than 50, and it was quite a shock! My eldest son Aaron is coming home for the weekend with his girlfriend Vickie and Luke's girlfriend Abby will be coming over too! We have booked to go out for a meal on Saturday night at Cafe Gnosh, and although I am looking forward to it, I am also dreading it, because I will have to spend time getting ready to go! The one consolation is it is a Saturday, so I will have a very easy day and hopefully a rest in the afternoon so I can cope with going out! I love it when all my family are together, and I am so looking forward to that! Life is good in so many ways, and for this I am grateful, but what I would like is one day free from pain, not much to ask, but unlikely to happen!
Aaron and Vickie
Luke and Abby
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