"What’s Wrong With You Then?"

One of the first questions I get asked these days is usually “Why are you in a wheelchair? What happened?”, or “So what do you do?” which leads me to telling them I’m unemployed due to disability and then the “Why are you disabled?” question gets raised.
It always boggles me that people think it’s okay to pry into my health and (lack of) employment before they know my name. I understand why people are curious, I’ve become quite aware I don’t fit many lay peoples stereotype of disability. I look well, I have four limbs,  I’m articulate, I’m 28 and I can walk a little way without using my wheelchair. Other than my mobility aids & my TENs machine there is nothing about my appearance that suggests I’m disabled or unwell. People tend to want to know why someone who ‘looks and presents’ the way I do needs to use a wheelchair to get about? Why can’t I find employment? Why do I need my husbands help to wash? But most pertinently, they want to know if it could happen to them.
I never really know how to answer. I’m not brave enough to say “Sod off. Do you realise how invasive that question is? You don’t even know my name yet!” but telling the truth takes ages and often leaves me feeling really rather defensive. I have no problem doing so, but I resent the amount of times I have to tell the story, because it turns out saying ‘abdominal nerve damage’ doesn’t seem to cut it with the average questioner.
Now, because I’m blogging and I believe my disability will come into it a lot I think it’s only fair to explain what it is…
I got really ill at 14, my appendix burst, but no one caught for weeks (the doctors didn’t think I was ‘ill enough’) and it went to peritonitis. I got an operation at the last gasp which saved my life and afterwards I continued on as before. I stayed physically healthy until 2008 when a operation to remove a tumour that had enveloped my right ovary & fallopian tube as well as to aspirate a large ruptured cyst on my left ovary. 
When I awoke after the operation I was told that I had been under a long time because the damage done to my pelvic & abdominal cavity by the peritionitis has made the operation a lot more complected. Adhesions* left behind from my peritonitis and surgery as a teenager had attached themselves to pretty much everything in my abdominal cavity as well as damaging my bowel and leaving me infertile by damaging my remaining fallopian tube beyond repair. Because my bowel appeared to be being choked my all a couple of adhesions the doctors decided to remove all of the adhesions whilst they were in there.
Afterwards I had some pain in my abdomen, it was weirdly tingly at times but otherwise ok for the first 5-6 months after the operation. Then Jan 2009 arrived and the pain sky rocketed I started getting some serious bowel complaints as well as going through periods of not being able to keep any food down and it has (so far) not got better. 
After a lot of investigations the doctors told me the adhesions had grown back worse than they were before, but this time they had damaged nerves when they grew back in creating areas of extreme hypersensitivity in my pelvic cavity as well as causing my small bowel to continuously obstruct. They won’t operate to remove them because they worry it will cause more adhesions to form and do even more internal damage.

So, how is that disabling?
The hypersensitivity in my pelvis is aggravated when it’s touched/ jolted so now walking any distance causes severe pain, as does bending, carrying and stretching – it’s amazing how many things you use your abdominal muscles to do. It’s also aggravated by the peristalsis in my bowel and little things like my bladder filling and expanding. I spend a lot of my day fighting back tears and yelps in pain. I feel like my abdominal cavity is lined with jagged glass coated in chilli, it tears and burns all day long. My bowel doesn’t work as it should, and because of the pain I can’t control my bladder when it gets full so I need to be in easy reach of a toilet. 
My small bowel twists around all day and gets caught frequently on the adhesions, normally this just constipates me as food can’t pass, but frequently it stops me being able to eat or drink without vomiting. It can also cause extreme pain and every two months or so it gets so bad I end up in A&E screaming uncontrollably being shot up with strong pain killers as the doctors wait to see if it will resolve itself or if it will burst.
It’s not all doom and gloom, I have finally been awarded DLA, my husband helps care for me, I have good loving friends and I’m starting to find ways I can put my mind to good use.

* Adhesions are strands of scar tissue that often form internally after operations & infections as part of the healing process. You can read more here @ wikipedia or here @ the Pelvic Pain Support Network

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