Welcome to my page…

Welcome to my page...

So how do you write a blog when you are newly disabled with it not being depressing or suicidal?

I decided a few days ago that I wanted to start a blog. Something that other people with CRPS/RSD could read and get “something” out of it, whether it was just a “Oh wow, that’s how I feel” or something inspirational to help through those days that just feel like utter shit.

I spent hours setting up the blog to find that when it came to the crunch I had no idea what to write, that my feelings of being somewhat newly disabled were too raw, lonely and too personal and that the only people I would want to share that with would be people going through the same thing and NOT my family or friends.

I also wanted to be able to have a blog that went worldwide, that anyone (well almost anyone) could read it, so I have now decided to write under the full name of Sharon Leanne so that the world can pick me up if they so desire and the 3 or 4 scary people from my past will not.

I have started to write this in a 2003 version of Microsoft Word and find it funny that the auto-correct picks up the word blog as a misspelt word 

Well firstly I say “Welcome” and thankyou for being here and hope that you will stick around. So a few details about me. – I am a 42 year old solo mum to a very gorgeous boy Jacob who is 14. Without this very special boy in my life, I really truly think my life would be completely meaningless. Now with CRPS it not only affects me, it also affects my boy my Mum, family and friends greatly as well. Perhaps we all forget that the people that love us suffer as well. Something I think all with illness should perhaps remind themselves of often.

I developed CRPS in September 2011 at the age of 41 after an accident where I fell a matter of centimetres when my dog jumped up into my face as I was lowering myself to the ground to pat him. A simple tiny little roll really where my weight went out on my outstretched left hand and fractured 4 little bones in my wrist and hand. I can remember two of the bones were the Scaphoid and Trapezoid, but as with each new read of an X-ray more little bones were found.

The local hospital put a cast on and I continued to be checked for sometime when the cast was eventually taken off at 10 weeks which is abnormally long time these days. I bitterly complained from the day it went on, the pain was terrible – burning and feeling as if it was broken into tiny little fragments. I remember talking to a girlfriend that suffers with a rare condition that means that she breaks bones easily and she said that after a few days the pain just goes away. In the whole 10 weeks it was hell and I was taking plenty of Panadene Forte and later Endone to try and get away from it.

It wasn’t until about week 9 that one of the doctors at the hospital said he was concerned (none of them before this thought it was a problem, they just put it down to swelling blah blah) – I think at this time he had mentioned that I may have CRPS but didn’t elaborate on this. It wasn’t until August 2012 almost a year later that I was diagnosed through the Royal Brisbane Multidisciplinary Pain Centre in which I was admitted for a Pain Program for 10 days.

When I look back my GP was the first one to banter the word CRPS around while my hand was in a cast. He is always always on the money, a brilliant GP I have thank goodness.

In the twelve months it took to be diagnosed the pain ramped up around February about 5 months after the fractures and from that moment it has been a roller coaster of pain and drugs. To this present day I do not have anything that will take the edge off the pain. I rely heavily on my TENS machine called “Lil Buddy” and self hypnosis which really is amazing how you can bring you pain down substantially.

Currently I am in a 31 day flare – well at least I hope it is a flare and not the “New Normal”. In 31 days I have become quite disabled and feel so lucky that my son has been on school holidays to help me. My left hand burns all day everyday, like someone has grabbed my hand and pressed it to the element of the stove. At the same time they also have a red hot knitting needle that they are trying to squeeze into the most tiny amount of space in the outside of my wrist. That is also on top of the feeling on the inside middle of my wrist that feels like every little bone has been broken into fine shards. My thumb has a dull ache and also sharp stabbing pains as well. I can’t pick anything up at all with my left hand, which as the only adult in the house makes everything extremely difficult. My son has cooked every meal for 31 days, tidied, washed the clothes and dishes and generally looked after me. The thought of having a shower can reduce me to tears, it is the most painful part of the day and sets the tone for the whole day. Cooking, something I once loved to do frustrates the hell out of me as I can’t do anything any longer…I need 2 hands. My doctor said that I must be feeling quite depressed and the answer is the pain is just so bad that you have troubles remembering you own name let alone being depressed. Episodes come across me at times where the wave of pain comes through and I can be in conversation with someone and will believe that they have started talking in another language. I cannot communicate with them because I am no longer able to remember the language either. At this point I just have to take some Endone, put my TENS machine on and try and go to sleep.

I have just been accepted by the government for Home Help. A carer will come in 3 times a week to shower and dress me and once a fortnight for 2 hours to vacuum, mop, clean the bathrooms, change the sheets and hang out some washing. It comes at a small price but every dollar is sacred at present until hopefully I am accepted on to a Disability payment which will be substantially more than what we have been surviving on for a year and a half ago.

Anyways I hope my first entry wasn’t too long winded for you, I look forward to any comments, uplifting thoughts in the future. I promise now that I will try and cut the doom and gloom down but be sure there will be days where I will be somewhat honest and have to be – just so others suffering with CRPS/RSD can know that they are not alone with there feelings and pain and how that has changed every single part of their lives. Me? I am still in a stage of remembering what life was like before and I have heard that this can be the most difficult stage where you remember what a “normal” life was like as it wasn’t that long ago.

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4 Comments (+add yours?)

  1. Leanne
    Jan 20, 2013 @ 20:02:54

    You are sn insperation to us all. The emotional pain you would have endured whilst writing this amazing blog alone is unbeliveable. Thank you for sharing i loved it.

    Reply

  2. Robyn
    Jan 21, 2013 @ 21:23:44

    Sharon I am so sorry you have to thru all that . I had no idea it is so bad . It sucks . Keep your chin up girl . Your blog is well written. Xxx

    Reply

    • shazzagirl70
      Jan 22, 2013 @ 20:18:54

      Don’t feel bad Robyn, I don’t write about it on Facebook too much but I guess that’s why I thought I would start a blog, instead of writing in a diary I thought I could share my story with my friends if they chose to read it and to also perhaps find others with CRPS and be able to support each other. Thanks for reading..you can follow me if you are interested?

      Reply

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