Posts Tagged ‘family’

A Night In The Life of an RSDer

Wednesday, February 3rd, 2010

Sitting here at 1am I am filled with fear at the thought of another night of PAIN, MISERY, GUILT, SELFISHNESS and WORTHLESSNESS. I shall expand on each of these further down but let me first grab just a few happy memories of the life I miss so dearly.
For the past 40 years I have had many health issues, including a severe whip lash which has left me with neck problems, “woman’s problems” resulting in four operations, 3 operations for various other conditions, heart problems (still present) plus really too many other minor hospital treatments (sure my husband and Mum could list every single one! as they are the ones picking up the pieces or looking after the home/children). However, even with all the aforementioned I was still full of energy, had a good social network and a highly successful career.
I was able to push myself thought the health setbacks and live a normal family life and considered myself to be no different to the next person. I was able to bring up two wonderful children, memories of which I hold with such joy and just thank god I did not have CRPS when my children were young (how difficult this must be for those that suffer and have a young family).
I was able to work my way up the ladder and managed a fantastic team of 16 staff, in fact work become my life (when my children left home) along with my long suffering husband and Mum.
I was able to face the ‘set backs’ with determination knowing my health issues would be short lived and would be overcome.
Oh how my life has changed since I was diagnosed with CRPS in my right leg. I now no longer work, have lost so much of my social network and a few friends along the way.
Why can’t I overcome this condition? or why is there not a cure for it?
The PAIN is there morning, noon and night, the burning in my back makes it hard to stand or walk, using my crutches leaves me in neck/arm pain and exhausted. The MISERY of “bad days” leaves me feeling GUILTY if I do not get dressed till lunch time. How SELFISH I feel when I cry and moan to my family. How embarrassed I feel when needing help to bath. How WORTHLESS I feel needing my husband to do most of the household chores.
I wish with all my heart that a miracle drug would allow me to push through the pain/condition in the same way that I have in the past. Until that happens I have to find a way through my suffering. Maybe I should start by looking for a brighter tomorrow, maybe I should just begin to start a new chapter for the life I have to accept and maybe I need to look at those less fortunate than I …… For I do have my darling family and what more could I wish for other than to be like the person I used to be.

Note: Of course not all CRPS is as bleak as this blog reads but this is what it is like for me day and night, day after day at this moment in time.

Kim M.

Surviving Christmas & New Year

Sunday, January 3rd, 2010

T’is the season to be jolly, or at least that’s what they say! But how do you cope when you’re feeling worse for wear and you haven’t touched a drop of alcohol yet? You’re excited for all of the restivities but to say that you’re feeling “a little bit rough” is a major understatement!

This year was the first in several that I spent Christmas day at home with just my husband, not running around after everyone else – sheer bliss. Yes I missed the nieces and nephews playing with their presents and the general chaos that a family Christmas brings, but it was so wonderful being able to get up when I wanted to, to go for a lie down without any snide comments and not get knocked by the kids playing with their new toys – not to mention not having to pretend that I’m as close to fit and healthy as can be – or at least not let on that I’m actually really tired and hurting and desperately need an hour to just chill out.

New Year however, was typically a completely different kettle of fish. As Big Ben struck midnight, I was with the in-laws, screaming “Happy New Year” with my niece, followed by an array of clinking glasses and kisses from everyone, then of course the obligatory drunken “Auld Langsine” – which I’m filry sure no one actually remembers all the words on the night! It was bitter cold going back home at 2am though, the snow was awkward to get through with the wheelchair and despite being well wrapped up, the fire in my limbs was definiately burning bright, letting me know how angry it was that I dared to go in the snow and convincing the affected limbs to defy the orders I give them to move.

Over the entire festive period however, we’ve had tapdancing elephants in the flat above us. Yes, I can understand how that may sound like I’ve lost the plot, but the usually quiet occupier of the flat above, has had company, who insist on jumping up and down on the floor constantly. As annoying as it would be if sound was the only issue, I can’t possibly describe accurately how this affects a person with RSD/CRPS.

Soundwaves are similar to water rippling, however they’re invisible and unless incredibly loud, the average person won’t feel a thing. Sadly with RSD/CRPS the nerves are beyond hypersensitive, hypersensitive on uber levels would be more accurate! A knock at the door can feel like someone repeatedly punching the affected RSD/CRPS area, sensing a sufferer into spasm, increasing the burn and the pain that was already through the roof, increases even more. As you can imagine, a bang from a ceiling above a sufferer won’t have a pretty effect.

Of course, the people concerned think I’m a great candidit for a mental institution when any of this is attempted to be mentioned. Frustrating would be a very realxed way to describe it all…

I’d like to wish all the RSDers out there a less painful 2010 and a year that brings many smiles and a great deal of friendship.