Wednesday, 22 May 2013

Legless but not drunk

My next post was going to continue on from the last but as other M.E sufferers will know you have to deal with every day as it comes and things always seem like they are sent to try us. For a month now I have been having a bad time with a flare up, which has been made worse from a chest infection (a normal illness, yes we even get them too.) For the last week or so my legs have been in a lot of pain and very weak as you may have read from a previous post about me getting stuck on the toilet. Anyway for the past few days I haven't been able to sleep from the pain, now I know at times with M.E it's difficult to stay awake but not being able to sleep is just as mind boggling.

So after another sleepless night and being very limited movement wise I rang up for a doctors appointment first thing this morning and luckily was able to see the doctor this morning. This was an adventure in itself needing help to get dressed and get downstairs and into the car. When we got there my mum went and got a wheelchair but in the meantime a car had parked right up close to the passenger seat, where I was sitting, so I had to cramp u even more to get out the car and be dragged sideways to the chair. It is amazing how many people are oblivious to people in chairs and how not even the desk to check in is low enough to see over. Anyway the doctor reassured me that the blood tests they took last week showed no signs of muscle damage but as he previously said there were some signs of inflammation. Last week when I went to see him we were both quite reluctant to try any anti-inflammatories, such as ibruprofen or naproxen, because of my funny tummy. However today we decided to try some that are used to for arthritis sufferers called celebrex and are known to not be as severe on the stomach. It's definitely worth a try because I'm getting to the end of my tether.

Since then I have had only had 1 tablet so far and caught up some sleep and have actually noticed some improvements. I haven't been needing as much help getting around the house. I am even downstairs watching the tele without being too fearful of being caught short or creating more pain by walking upstairs. So I'm feeling quite thankful. Please note that I am not hailing these pain killers as a miracle cure, because we know that unfortunately that that simply isn't the case and tomorrow or even in a few hours time I could be in agony again.

When you experience downs like this where you are very limited physically and are relying on help from others it makes you question "how long this will go on for?" and "will it get any worse?" Now I try not to think about myself being disabled, although I know it is a recognised disabilty and many people are reliant on disability allowance to get by. So in no way am I having a go at those that claim because we are perfectly entitled to it and it may even be a route I need to go down yet. I merely mean to comment on my own state of mind at present and that is I am not sure I am ready to be formally known as disabled, even after 2 years. I'm scared it will knock my confidence even more and make it look like I'm not trying to get well. I was told by a M.E specialist to not to refer to M.E as an illness because it has a negative affect on your outlook on the condition and I think it's somehow stuck with me. To me I am still that determined woman who will keep laughing through the pain and that's what I hold on to, to stop me from going back to a dark place.

I do still have good days and manage to get out, at the expense of some extra time in bed, so I guess part of it is also public perception. I don't want to be seen as a free loader or to personally feel like I can't go shopping on a good day. I should be feeling exstatic about having a good day not guilty. Another M.E sufferer I know once described it as feeling like being a fraud, because you look fine (well questionable) on the outside and yet you feel terrible on the inside, or that night you can be stuck in bed.

This is something I'm going to have to think carefully about in the next few weeks or months and at the end of the day how are they to know your benefit status? Other than me announcing it on here. Does anyone else share this opinion, or have any experience on claiming benefits?

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