Friday, 11 April 2014

Is this me now?

When you look at me now what do you see?
A face lined with pain and stress and goodness 
The fight of days gone and the now and the might be
Or just a face?
When you look at me now what do you see?
The hands that shake and split and sores and bent and spent
The clasp or warmth to hold so bold
Or just hands?
When you look at me now what do you see?
The body so still that aches and curves, reserves, deserves
Leaning here and there and everywhere
Or just a body?
When you look at me now what do you see?
The legs that could walk for a day given way adorned in grey
The odd wobble, hobble or toddle
Or just legs?
When you look at me now what do you see?
Do you see me as I am as I was as I may be this me really
My heart and my soul dark as coal light as air
Or just me?

I wrote this a few months back after thinking as I often do about who I am now, what role I play in my family and in life now and wondering what people see when they look at me or think about me now, if of course they think of me at all.
It wasn't and isn't meant to be pitying or defeating but an honest wish to know if people see beyond the medical condition that has caused these changes to the me that still resides within the body.
Anyway maybe partly this was brought about by the changes that have been happening recently to my body..........
As those of you that have reasonable contact with me through the social media will be aware (possibly if you have caught one of my not so prolific messages these days) the consultants- rheumatology and dermatology have concluded that we have come to a grinding standstill in being able to slow down the disease itself after many years of trying everything they have thrown at me it was time to be realistic and stop putting my body through such trials purely so they could feel they were 'doing something'
With this in mind our thoughts turned to longer term pain management, this was to be handled by my GP.
My GP is lovely, approachable and ONLY THERE 2 DAYS A WEEK.
 Trying to get to see her is a nightmare and I was sure it was her I needed to see as three years ago I had tried to change from The maximum dose tramadol I had been on for years to matrifen patches, at that time my GP was on maternity leave and I saw 4 doctors in 5 weeks who all said different things and the change never happened, it was a complete disaster so this time I wanted/needed consistency whilst changing drugs.
So my journey began....
Start patches, reduce tramadol....week 1
Ring GP with progress update
Double strength of patches, stop tramadol.....week 2
Start pacing the floor at night with horrific withdrawal from Tramadol
Panic slightly about lack of sleep
Ring GP with update
Take low dose amitriptyline for withdrawal and to settle at night
Pace floor at night with horrific withdrawal from tramadol
In desperation start taking 1 tramadol at night 
By now I am getting one nights sleep in every three to four nights.....not good
Hubby is learning to avoid me and even Molly and Bobcat seem to watch to see if I stay in bed at night or am playing at being a night owl.
Isn't it funny that when you are awake it is really really annoying to have others sleeping? 
I tried very hard not to wake Trevor every time I got in/out of bed although due to my joints etc that in itself is quite a feat but I did try not to push. Kick, roll onto him honestly I did :-)
Also have you realised that 3 o'clock in the morning is vastly different to 3 o'clock in the afternoon?basically it's boring! 
No one is about and there really isn't very much to take your mind off what your body is doing and it's hard to distract yourself, I mean there's only so many times you can try to count the pretty lights on the garden fence, and goodness me have you noticed just how much noise you make trying to move around quietly in the middle of the night?
As my GP only works two days a week you usually have about a three week wait to get an appointment with her so she has taken to asking me to ring her instead of going to see her when she wants a progress update and that's what I did today.
Latest plan and believe me everything I can cross is crossed (with my hands etc it's no mean feat)for success this time, stop amitriptyline as it's doing nothing and let's try diazepam low dose for short while to get beyond the tramadol withdrawal's hoping eh?
Oh and the point of all this?
Well the patches are working well for me, would be better if they would stay on of course but that's another story or maybe my next blog (The inventive ways we have tried to keep patches stuck to me) sounds good hhhmmmm? 

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