Sunday, 13 May 2012

What Was That You Said?

These have all been said to me in the last 2 weeks.

MS is worse than ME” – from someone whose friend has MS and is “so ill” (my phrase) that she can take her dogs for long walks, work part-time and go on holidays to South America.  I’d love to be that ill.

Now I know how you feel.  It’s alright for you though, because you’re used to it”.  Yes, even finding talking exhausting and not being able to do anything for 2 months is, obviously, far worse than not being able to do those things for 36 years.

I know how you feel now” (Do you detect a theme here).  This from a friend who I was making lunch for, and making sure he had books, medication, radio etc whilst in bed recovering from an operation.  The same friend who used to think it was clever to take me out and deliberately make me ill.  Yes, really.

My ME Story in Brief

My ME started when I was 20 years old and at university.  I have never married.  I have never had children.  I have never been able to work full-time.  I've been self-employed for 17 years so I don't get the sack when I'm sick.  I'm 56.  Yes, I've had ME for 36 years.

For 35 years I kept a low profile.  It has always been made clear to me by doctors, many friends and some family that "there is nothing whatsoever the matter with  you".  I learnt to shut up and get on with it. Most people make it very obvious that they don't want to hear about what's wrong with me.  Curiously, these are often the same people who will phone me up and tell me about their own ailments at great length.

Then in October last year I was in bed for 3 weeks.  I was so weak that I literally lost my voice and couldn't talk.  I could just get down the stairs to feed my cat and myself and that was it.  I couldn't even sit up in bed.

Was my doctor interested?  What do you think?  They couldn't even be bothered to come out and see me.  If I had cancer/Aids/anything else and suddenly became that ill they would be falling over themselves to help me.  But I don't, so they don't.

During those three weeks I had a personality and attitude transplant.  I stuck my head over the parapet and it's stayed there.  I waited until I felt really badly depressed then went to my doctor and deliberately let rip.  It was planned, and he listened.

As I said to him - even murderers get let out after 30 years.  I get nothing.  No help.  No support.  No treatment.  No attempt to find out what is actually wrong.  Nothing.  Ever.

This blog is going to be my random thoughts and experiences of living with ME.  It's going to be my way of venting my frustrations.  If it helps anyone else, that will be good too.