I absolutely hate doing these posts.
I believe they're vital in our fight. It's only by seeing HOW we achieve what we do that we can explain why there are barriers and obstacles others don't face. It's only by saying what we go through that others may understand how very, very far we need to travel in support, services and "work provision" for those with fluctuating conditions.
Nonetheless, it either elicits cries of "Oh poor you, you're so brave" or well meaning hints at "inspiration"
There are millions like me, carrying on, day to day, through extraordinary situations. Some work, some can't, some give up, some fight on. It isn't brave, it's life as we know it.
However, there will always be those that question our ability to type, or speak, or attend. To fight and oppose and organise. Just like your lives, some of us sink and some of us swim. Could you really judge either?
However, a while ago, I wrote that my Drs and surgeons were saying those dreaded words. The words that turn every heart to stone. Previously healthy or constantly ill, that snuff out hope and ambition in a moment. "There's nothing more we can do."
I vowed there was plenty I could still do and set about doing it. The medical opinion was that my petulant bowels had suffered so much surgery, they had simply given up. They had succumbed to a nice long sleep and just wouldn't work any more. It was agonising - when you put food or drink into a receptacle that refuses to process it, you writhe and vomit and spend hours on the toilet in a fairly miserable facsimile of life.
They told me to go to bed, take lots of opiates for the pain, be fed through a tube and possibly consider a bowel transplant.
I surmised that those were the very worst things you could do for a sleepy bowel. Opiates make them sleepier, exercise, however gentle stimulates spasmodic responses and eating - however painful and problematic - keeps things moving too.
So, I realised at that moment, that to do the best for myself, I just had to accept the pain and vomiting and diarrhoea and introduce the "Stuff you Drs" plan.
I've slowly built up the distance my weak and wasted legs will carry me. I've eaten "little and often" however much it hurt. I've kicked the opiates into touch bar all but the most delirious days. (A 66% reduction so far)
And I'm proud to announce, it really has worked. Oh, I still feel absolutely dreadful. The pain is searing, it seeps into everything I do. It takes my breath away, leaves me unable to talk. But the vomiting has eased a lot. I'm still sick, but much less often.
And......drumroll please...... I've put on 9 POUNDS!!!!! I am half way to my target and well out of the "feeding you through a tube" hell of permanent and more significant disability (in the true social model sense that the tube, not the feed would disable me so much further both in barriers and the eyes of the general public)
So what can I say? It was extraordinarily tough. So tough, I wonder how I've managed it. I DON'T say this for pity, simply that it's true.
But here's a wonderful thing!!! the Drs I thought I would have to fight have embraced this totally and supported me 100% in my attempts to find less medical ways of dealing with my symptoms.
This is seriously impressive. My new hospital has earned the acclaim of being named because this is truly awesome and I have no hesitation at this point in revealing that the wonderful Drs are at UCH in London.
They have found that I have severe "bacterial overgrowth" from all the operations with a simple test and have started me on an intensive regime of antibiotics to kill all the infections and then.... Pro-Biotics (industrial strength) forever!!!! How cool is that!!
But, they've also discovered that my Vit D is low and this could cause a lot of the fatigue and muscle wastage in Crohn's!! So I'm getting industrial doses of Vit D too. They've recommended a particularly good peppermint tea (no, really!) and have written to my GP to ask that she consider hypnosis for the pain!!!
How astonishingly wonderful is this? To be honest, it's all I've ever wanted from Drs - support to manage my condition in the most natural, effective way for me. I'm not anti-medicine, I just don't want more than I absolutely need.
So how am I???? Hahahaha, that's a tricky one. I'm atrociously better, agonisingly stronger and miserably happier. The pain is awful, the "getting stronger" is like running my own personal marathon every day. There are things that could make this temporarily "better" but I must shun them.
But am I living a better life? A million times yes. I engage with life again. I spend time with my children and husband. I walk, agonisingly slowly through the shimmering summer days. I cook again and nourish my family in the way that fulfils me most. I laugh and I cry and I feel. The good and the bad.
I'm sure there is some tummy-griping herb that could replicate my symptoms for IDS or Hoban. Perfectly harmless, but equally grinding. If they were to pledge to join me and experience the days as I do, I GUARANTEE they would get serious about sickness, disability, welfare and working in about, hmmm, 7 hours. If Mr Hunt would like to play too, I bet the NHS would suddenly be a very different beast to him.
Do you read this and expect everyone could or should do as I did, make the choice I did? Try it with me and tell me if you could.
As I said, some sink and some swim. In illness as in life. Tomorrow I may sink too. Today I'm swimming for all I'm worth.