What if we viewed lived experience as an asset? As an asset of professional, economic,…
A few weeks ago I was rushed to hospital with another bowel obstruction. I have them frequently, but most resolve themselves. This one however, didn’t. Fifty four hours it took before a surgeon managed to pass a catheter through my Ileostomy into my small bowel to release the pressure and drain the bowel. I had a tube (NasoGastric tube) to drain my stomach to try and stop me being sick, as when my bowel obstructs I vomit what usually comes out of the other end, which is extremely unpleasant. My bowel is so stretched and inflamed that it can’t work properly, although my intestines had failed anyway as a result of the Ehlers Danlos Syndrome and Chronic Intestinal Pseudo Obstruction.
|Me with the NasoGastric (NG) tube in
Unfortunately, every time I have one of these bad obstructions, I never seem to recover and return to the point I was beforehand. I slowly, but continuously deteriorate physically, my body gets weaker and more dysfunctional, and more organs become involved and begin the decline towards failure. In addition to the intestinal failure, I am now in bladder failure, and I will be having a permanent catheter (a Suprapubic Catheter) put into the bladder through the abdominal wall (close to the pubic bone) to drain my bladder of urine. My bladder has stretched until it can hold over 2 litres of fluid – 400mls is ‘normal’. As a result of this stretching, and the problems with the nerves and muscles in my bladder, it can no longer do its job and empty the urine properly. So, soon I will accumulate another tube for us to care for, another tube constantly sticking out of my body. I joke that then I will have the full set!
The constant deterioration slowly creeps on, adding more problems into the mix and worsening of the ones I already have. It isn’t always noticeable day to day, but when you look back over the weeks, months and years, it is evident. Just over 5 years ago I was living a normal life. But when I started getting ill, we were completely out of our depth trying to navigate the NHS and seeing countless doctors who told us it was “all in your head”, a school phobia, or I was just being lazy. Since then I’ve accumulated many diagnosis’; most, if not all of which are secondary to my genetic connective tissue disorder, Ehlers Danlos Syndrome. Still, the fight for treatment, referrals and understanding goes on. I owe my life to the NHS.
Although, on the up side, we do have many laughs. Just this week at my appointment we forgot to check if the place was wheelchair friendly, and fortunately it was; if you class a temporary ramp only just wide enough for my chair and someone stopping my wheelchair from tipping backwards as wheelchair friendly. I had to reverse down it on the way back out too, which I did manage to do (I’m rather good at driving if I may say so myself) thank goodness. Mum wouldn’t have been able to do it; she can’t drive my wheelchair very well, especially backwards; she’s nearly ripped the doorframe off the bathroom and my bedroom a few times!
Thankfully I have something new and exciting to focus on. I am now the proud owner of a 10 week old Working Cocker Spaniel bitch called Molly (official name Steyr Scout). She’s currently black and white, but will eventually be blue roan. She’s growing so fast, she’s so much bigger than when we picked her up 10 days ago, and we can see her colour changing already, with more and more black spots appearing in her white coat. She is my companion, and I aim to train her to be an assistance dog for me. I’d also like to perhaps do some agility or flyball with her for fun. That would be a sight; a lady in a huge wheelchair trying to direct a dog round an agility course! She’s settled it very well and will sit on command, and will bring toys to me to throw for her. Her favourite place is laying above my head on my pillows. She doesn’t like sleeping unless she’s with me. In the mornings I go back to sleep, and so I am not disturbed we shut my bedroom door. Molly doesn’t like it, and will sit at the door whimpering and pawing it, and has barged her way in a few times. She seems to know when I wake up and will insist mum or my Carer open the door and put her on my bed with me. She knows who her mummy is. She’s giving me hope, a reason to keep going, and something to focus on and aim for. I can’t wait to start walking her, even though I know the sitting up will be agonising and difficult for me. Hard as the pain is to cope with, playing with her and seeing her enjoy herself makes it worthwhile.
I haven’t written a post for a few weeks because I’ve been so unwell, and I have an operations coming up as well as a few procedures, but I hope to get back to my regular schedule of blogging. As well as Molly, my blog gives me something to focus on and aim for. I hope people are enjoying reading it.