22 January 2011
Early followers will know that talking about my illness, my symptoms leaves me wriggling with embarrassment. Over time, us sickies and spoonies become adept at covering up, at hiding the pain, at fooling our brains into believing things really aren't that bad.
When someone asks how we are, we say "Oh fine," just like you do. In my case, my Mum has been buying me expensive face creams for years that have the power to transform me from revolting to resplendent in less time than Cinderella's fairy godmother.
Still, health wise, November and December were hardly a walk in the park (see blog from "Day 1, 11th November) - Terrible, constant pain, enough opiates to floor an elephant, two hourly injections I shove gratefully into my own buttocks and never ending bouts of 24 hour vomiting, leaving me delirious and bedridden. The astounding lapses in hospital care and paucity of community support, the incompetent or cruel doctors and the enormous strain my family went through resulted in me having major bowel surgery on the 22nd December! Yep, of all the dates in a year, I had to get the one that guaranteed I'd spend Christmas day in hospital 130 miles away in Cambridge, while my kids played at home with their Nana, trying to pretend that Christmas is "just a day."
So, exactly 1 month from surgery, under intense pressure from Dave, I really ought to tell you how things are.
Well, I feel like you. Since Mr Genius the surgeon opened me up, cleared my bowel of ulceration and bits that stick together and bits that twist around, I felt better literally about 3 or 4 days after the op. OK, surgery stings a bit, but compared to the writhing, griping, unbearable pain of Crohn's, it's a mere scratch. The anaesthetic leaves you tired in a way you never believed possible - even having a bath can put you back in bed for the day - but gradually you get stronger and need less sleep and take less drugs and before you know it people have forgotten why you shouldn't really be driving or hoovering yet.
On the subject of "less drugs" regular readers will also know that pain relief and opiates are the absolute bane of my life. Will I get enough? Will I run out? Will I get a cruel locum who decides (having ignored every scrap of evidence) that I'm "just a junkie"? Will I end up in A&E trying to explain why I need a jab full of horse tranquilliser? Will the ward nurses bring the injections regularly enough to keep me out of agony once I have to hand control over to them? (Answers : Yes, Yes, Yes No, No, by the way)
Most of all, I have to persuade everyone from my pharmacist to my GPs dog that I'm not an addict. Despite 27 years of medical notes, 7 major bowel ops, two resections (where bowel is so diseased they have to cut it away) and nearly 30 blockages opened up to relieve obstructions, it's always the same. Despite the chemo they've asked me to inject myself with, the steroids that have given me osteoporosis, the azathioprine that can cause brain tumours and the hard-core immuno-suppressants that can trigger TB, yep, it's the painkillers, the thing that gives me some blissful relief that they care about.
Every single time I get dangerously sick I have to take pethidine. Before surgery I have to have 6 injections of the maximum dose a day. I have to carry on like this for however long it takes the mighty NHS to fire up its engine and grind slowly into action. 3 months, 6 months - maybe even a year before I get the operation I need.
Well, miraculous as I am, *blush* I have been able, as usual, to simply stop taking it with no ill effects. If you don't realise what that little sentence means, it means that I'm incredibly, incredibly lucky to appear to have been born without the withdrawal gene. My brain is clear, I can type without taking an hour to write every sentence, and I can't remember the last time I passed out face first on the keyboard!! Yay! Two weeks of no pain, two weeks of not sweating and itching and twitching my way through the day, peering out at the world through those hazy opiate goggles.
Will anyone bother to write in my notes "As discussed, Sue has been perfectly able to stop taking painkillers with no ill effects. On future admissions, we see no reason to treat her like a four year old or an abused dog that you punch for kicks." Nope, I'll go through exactly the same nonsense next time, having the same conversations with the same people fighting for the one thing that gives me any relief at all.
For the next 3 months - maybe 6, I'll get a tantalising taste of "normal". Of course, I'll still have an autoimmune condition, so I'll still have to inject the chemo, I'll still need too much sleep and run out of energy before lunchtime, but I won't live with pain clouding everything I do. I won't start vomiting and carry on all day and all night. I can eat (and process) food again, and the recent period of malnutrition means I chomp and nom all day long. Slowly my thigh bones disappear, then my hip bone recedes and my arms fill out again.
During the worst of my symptoms, the hospital sent me home for three weeks to wait for the surgical date. We tried everything to get a bit of help for my dreadfully overstretched family, but time and again we were told there was nothing available (story here : http://diaryofabenefitscrounger.blogspot.com/2010/12/as-my-surgical-date-is-definitely.html ) It might amuse you to know that out of the blue, I got a call from a health visitor on Wednesday, seeing what they could do!! Apparently, the GP's surgery had let them know. Says all you need to know about NHS efficiency and community care really doesn't it!!
At some point I'll get that first twinge, I'll feel queasy after lunch or spend a bit too long on the loo and it will all start all over again.
But for now (as you might have noticed) I'm on fire, high on the energy you take for granted. I will write and rant and push and plead until the coalition start asking when that next obstruction might be due. That's what I'll do with me 3 or 4 months this time and frankly, I can't think of a better use of my time.
