Friday, 12 May 2017

This is me ...

It is Fibromyalgia and ME Awareness Day.

I have fibromyalgia.

This is a long post which I posted on Facebook.  Although once I'd pressed the post button I realised there were so many things that I missed out.  So I thought I would have the original post on here along with the additions.

I had "it" for nine months before I was given a diagnosis. This was nine months of numerous blood tests; tablets; electric currents run through my legs; hydrotherapy whilst having a week in hospital whilst they were trying to diagnose me (this was whilst my little girl was at Nursery and had her first ever Nativity  - I had to plead with the hospital to let me out for those two hours!)

It all started off with pain in my right knee and then the left, then my right ankle, and then my left - it went round my body like that; adding one side and then the other until practically every joint in my body hurt.

During this time I was unable to have my 2 year old daughter on my lap or give her proper cuddles; Stairs were a major issue and I frequently had to go up and down on my backside. Sleep was rare and disturbed which meant I was so tired every day and what energy I did have was spent trying to run a "normal"ish home for my daughter and I. I was off work for a year and my ex-partner would ring work and tell them "it was all in my head". I couldn't drive anywhere so was reliant on friends (and my ex) for lifts. Walking to the doctors would take me 40 minutes when it was 5 minutes down the road.

Eventually I got referred to yet another doctor ... but this one specialised in chronic pain. He did seem to be the first one that really understood what I was going through. He ran Pain Clinics for those suffering with chronic pain - and I attended. It was the best thing for me. I was able to learn to pace myself and get back my mobility.  I did little (and I mean little) exercises every day and I was able to build up to driving again and return slowly to work; I could do more, but also learnt to know my limitations.

Nowadays (and this is over twenty years since I was diagnosed) I have good days and I have bad days. 

The majority of my good days are spent feeling exhausted as I still don't sleep properly. I wake often and dream lots and just don't get a "proper" deep sleep. Every morning I wake up and I ache, my shoulders, my back and my knees mainly.  I always feel like I haven't actually slept at all. I pop my pills (I'm on lots of pills) and hope that it's going to be an okay day. Most days it is. I get through the day okay. But I can't do everything I want to. There are so many things I want to do, but can't for fear I will suffer for it the next day or next week.  I have to learn to pace myself and know my own body and what I can do.  I desperately need to lose weight but I haven't got the energy to do all the exercising that I need to do in order to lose it.  

Practically every day I have a headache. It can be one I can cope with, but it can also be one that means my brain just does not work! I often have pain behind my ears and the hinge bit of my jaw (oh and fibromyalgia sufferers often grind their teeth ... mine are practically smooth!  My dentist has recommended a mouth guard to wear when I sleep... hah!  As if!  How can I get the few poor hours I do get of sleep when I've got a bl**dy mouth guard in my mouth?). I also have IBS.

There are days when I can't do. I just can't. It means I spend a day in bed or on the sofa. I hate those days. It means I feel disabled and worthless. I want to be able to do things, anything. I craft and sometimes on those days I can't even do that.  That really hurts as I feel that crafting is a huge part of who I am.  I read and I read lots, but even that can hurt on those really bad days.

I am extremely lucky in that I have found a lovely man who understands.  He really is a saint as he does so much around the house when he's here.  His job means that he is away a few days during the week and those days are hard.  I have the four kids (his two teenagers and my two boys) at home and I have to sort every day things out for them.  It does mean, though, that when they're all at school I can collapse if I need to.  I just need to be able to wake up for the end of school to pick up the youngest one - and then the evening begins!  When my man is home he does the school run so I don't have to get up; he cooks many of our meals; and he always does the big weekly shop; he does most of the driving. He does so much and doesn't once complain.  I honestly don't know what I would do without him.     I have had previous partners who haven't understood and have expected me to be "normal" (whatever normal is!) or have been overly sympathetic and made me feel a total invalid. So I am lucky.  Very lucky.

So please (if you've managed to read this far) spare a thought for those who do suffer chronic pain and fatigue every day. You may not be able to see it in their face but boy oh boy they know about it in their body.

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