Posts Tagged ‘hip replacement’

And Finally…

Wednesday, February 1st, 2012

Yes, so I’ve been away for a bit. I had to make some hard decisions about what I can do with my energies and blogging sort of came bottom. I’m not promising to do better.

I’ve had a bit of a breakthrough and I thought I’d share. After years of dreadful, mysterious and downright annoying symptoms the doctors finally decided to look at the whole instead of each individual symptom. Novel. I’ve been sent to this specialist and that specialist only to be told ‘no it’s not X’ or ‘definitely not Y’ but never being told what was actually wrong. Symptoms ranging from stomach and bowel problems, hair loss, painful joints, exhausted and sore muscles, feet that can’t cope with shoes or duvet covers, hands that need to soak in warm water because they’re too painful to touch, a feeling of being poisoned, a feeling of being windswept/overexposed, dry skin, headaches, nausea, well….the list goes on and on. It doesn’t always come at once, i get waves of feeling dreadful and get slight improvements, never back to my carefree days and then the dread feeling of the wave of greater illness coming on.

‘What’s wrong with you?’

Well, there are things i know that are wrong. A facet joint damage caused by a nasty car accident which took a couple of years to get over at the time but has never given me a day off work but does give me continuous pain. I also have a leg length differential which went on undiagnosed for long enough to start me on a path of osteoarthritis in my hip. I now have a cyst on that hip bone and am waiting for a replacement. But the other stuff, what could I say? ‘I feel ill’ ‘I’m exhausted’ ‘It hurts when you touch me’, it doesn’t really cut it for me and it doesn’t satisfy other people. I’ve often felt that people think I must be a bit of a hypochondriac, complaining of problems but never being able to say more than ‘joint pain’. I’ve recently found out that there is a recognised phenomenon of feelings associated with Medically Unexplained Symptoms (MUS) directly related to other people’s perceptions of those symptoms. How can they be real if they don’t have a name?  I can assure you that those symptoms for me, and many others, are very real and have a huge impact on daily life.

Finally though I went to see a Rheumatologist who listed, looked, read my notes, asked questions, and then delivered not only a diagnosis but also a plan of action. The diagnosis was dependant on other diseases/syndromes being  ruled out by blood test. I went home and waited. Last week I came home from a busy busy day and sat completely wasted on the sofa, I carelessly opened my letters and glanced at a letter, another appointment for another Doctor I thought but no, it was THE letter. The specialist had gone to the trouble of not only giving me that diagnosis but listing all my other problems. I have multiple issues requiring an holistic approach to help me.  I have Fibroymalgia Syndrome, Chronic Facet Joint Syndrome, Leg Length Discrepancy, Right Hip Osteoarthritis requiring full Hip Replacement. I’m using capital letters, these are my enemies and they now have names and I respect them.

Fibromyalgia has been mentioned to me before but the list of symptoms seemed so horrendous I didn’t want it to be me. When I found it it was me I smiled, I cried a bit and felt completely relieved and finally felt recognised. The plan is to go to a Pain Clinic to assess my drug regime and see if anything further or different might help. I’ll also be given a physio plan designed to get me as fit as possible before my hip replacement after the summer holidays. My difficulties now are that I feel shattered walking to the bus stop, having to stop and assess my pain even on this short route and I pay for that walk all day. I fell very badly last christmas thanks to the hip and damaged my shoulder’s rotator cuff and a/c joint, this makes it very painful to use my walking stick and I’m worried about how I’ll cope taking all my weight off my hip. I’m hoping this physio will help with that.

Someone said to me, not long ago, when I was feeling extremely unwell, that I should give up my music and concentrate on work.  Why should I? You aren’t forced to chose a life of no fun/creativity and work yourself into an early grave, and I won’t take that path either. Money is important, work is vital for the family and for my wellbeing and while I can work I’m going to carry on,  but it’s not the be all and end all. At the moment I can only stay working full time by basically doing little or no house work and very little cooking. My amazing family supports me so that I can stay in work. I’d love to work part time and maybe improve my quality of life, reduce my pain etc but there’s no chance of getting higher DLA in the current climate which means I’ve got to continue grinding myself into the ground. Doing something pleasurable like music enables me to feel that it’s worth it.  Even so, one 25 minute gig leaves me feeling like I’ve squashed in an extra day’s work and I’m not sure I can keep up the balance, because it isn’t really balancing out. I hope the pain clinic can help that.

The current debate and plans for welfare reform horrify me. Not just for myself but for all people who are in unfortunate, vulnerable, weak or disabled circumstances. No one chooses to be made redundant, disabled, the parent of a disabled child, a vulnerable person, etc. No one wishes to be in a position where they’re unable to move out of house that’s too big due to housing shortages but unable to rent the spare room out due to threats of being criminalised. People don’t chose to give up work due to increasing illness as ‘lifestyle choice’ they do so because it’s Hobson’s Choice.  I feel very lucky that I can still drag myself in on my bad days, because I cling on to the knowledge that I can spend 48hrs in bed at the weekend if I need to. When the cost of my week in work exceeds the compensation of 48 hours in bed at the weekend then I will have to take stock again. I’m not asking for anyone to feel sorry for me but I have paid into the system that’s supposed to protect me and others in these circumstances. I need to know that if I can’t continue to work full time I’ll be supported to continue to work for as long as I can, as much as I can by a welfare system that is there to help me.