Monday, 12 November 2012

I am Spartacus

I have been inspired this week by blogs of fellow sufferers of PVFS/ME/CFS. Rather than have all these thoughts swirling round my noggin I have decided to share some of them with you. Aren't you lucky? Another impetus is the dawning realisation that this illness is something that is not just going to sneak away and that I am going to have to adapt and enrich my life in order to best cope with it. For the past year I have at times felt embarrassed and ashamed to be diagnosed with an illness that many do not recognise and most do not understand. This may sound odd but it has taken me some time to allow myself to actually be ill instead of feeling guilty or responsible for not being fit, healthy and able.

Some of this is because I am and always have been too hard on myself but some of the blame lies at the feet of the medical profession, who seem to think if I just keep pushing myself that bit further I'll be better. Having had a year of pushing myself to the brink of exhaustion daily in order to try and force myself back to full health, I now know this is not the way forward. I have tried my best to do as instructed but it has NOT made me well. What it has done is make me feel inferior and inadequate, worried that I am not doing enough and that I am to blame for my poor health.

To these feelings of worthlessness I say NO MORE! I am ill and it is not my fault. I have a very real and life-changing condition and from now on I am going to do my best to deal with it on my terms. This change in my attitude has been developing over the last couple of months and I can see a difference in the way I deal with meeting people I haven't seen for ages. Previously, the conversation would go a little like this:

Me: Oh hi, haven't seen you for ages! How are you?
They: Good thanks, how are you?
Me: Ohhhhh, you know....... (awkward pause). So, what have you been up to? etc, etc.

In the last few weeks, the conversation has concluded differently:

Me: Oh hi, haven't seen you for ages! How are you?
They: Good thanks, how are you?
Me: Not so good. I've been signed off work for a year with Post Viral Fatigue. It's pretty rubbish as I get tired really easily and can only do things for a short period of time. Still, could be worse. At least I can leave the house these days (laughs heartily whilst friend looks on with horror). So, what have you been up to?
They: Gosh, how awful for you etc, etc.

Sometimes it's easier just to say I have ME, especially as no-one can really tell me the difference between ME and PVFS. They both have the same symptoms and everyone has heard of ME so it requires less explanation. Sometimes I even get a teeny bit of pleasure from knowing I'm about to drop a metaphorical bomb into the conversation. Hey - don't judge me, I don't get out much and waiting gleefully to see which particular facial expression I'll be met with is some small form of enjoyment in my lacklustre world.

So back to the purpose of this post - I would like to take this opportunity to announce to the world (or the handful of spammers who might actually read this) the following.....

My name is Charlotte. I have ME. It sucks but I'm learning to deal with it.

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