#chronic pain #chronic illness
Easter saw a different pain in our household, with hubbie experiencing the nearest to childbirth that a man can. Initially he blamed back pain on a football club that he runs for 6 and 7 year olds, but as the intensity rapidly increased over a 2 hour period we both knew that something more was going on. So I packed him off with my dad as chauffeur and the 17 year old as escort to A&E, with a strong hunch what was causing the problem. Son was given strict instructions to keep in touch, ask questions and let me know what the doctors said. Do you think he did? Eventually I received a text with one word……MORPHINE! What does that mean, Olly??
My hunch was correct and blood tests came back showing renal colic, or kidney stones in layman speak. Allegedly the most acute pain and akin only to labour. When I finally did speak to my dear son, he informed me that by the time his father arrived at casualty he was in agony and the initial drugs didn’t even dent it. Oliver expressed his concern by reading his book! The symptoms were classic(extreme pain at the edge of the lower ribs radiating to the side), except that there had been no grumbling warning signs, and subsided as the stone dropped into the bladder. A scan the following morning showed clear kidneys, no abnormal blood tests and no predisposing factors – just one of those things!
My news is that I’m a week off the opiates. HURRAY! I’d be lying if I said that the last few weeks have been easy – in fact these lower doses have been harder to adjust to than the huge doses of last year. Restlessness, stomach pains, upset stomach, increased pain, insomnia….need I go on? The sleepless nights are unwelcome and painful, yet already my memory is returning and my desire to read and write. The funny thing is with certain drugs that the brain slowly but surely turns to a cotton wool fog, but at first the benefits seem to outweigh the side effects. But then the opioid shaped holes in the memory, the concentration and the well being start to turn the brain into a Swiss cheese. I can only imagine that this must be a little what the onset of dementia feels like. My inability to think, to remember, to concentrate has stopped me from functioning normally and in certain school governance meetings I have felt just out of my depth. This, combined with faints that may or may not be a type of seizure – hurray! – has left me unable to function as I want to.
My GP was surprised when I told her my news this morning. She is hopeful that I may also see some better bladder function return, but my poor guts don’t know if they are coming or going. It will probably be a good 6 months before I am entirely free of oxycodone, so I have no plans to touch the pregabalin as yet. But I do feel pretty proud to say that I’ve gone from 120mg twice a day to zero in 6 months…….I went to a book club last night and I’m even using Twitter. Good riddance brain fog!
On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse. Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same. It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting. Win, win. Back to the INPUT session ….
Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury. It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on. We did meet some of the participants in week 3 of a 4 week course which was interesting. A couple of them had already had stimulators which had failed – one lady had received 2, both failed. Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully! Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square. I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means ALL NIGHT. I’m so jealous!!
The plot was as daft as ever, the men as dippy as the women were sensible, and the Home Guard, with just a little help from their strong ladies, saved the day against “MR HITLER”. We were some of the youngest in the cinema, and even in a carers and cared for group were the last to make it out. Duncan very nearly tumbled down the stairs with me today as my leg/foot were numb and my balance indicated that I’d been on the booze when I stood at the end!! Very good first impression I created. I’ve said it before but the stim doesn’t stop my leg going dead…..does anyone out there have any helpful tips??
y – I guess that I have learnt my lesson as everything was so painful last night. Everyone always says we medics make the worst patients! Guess what I spent the afternoon doing? Watching rugby whilst peeling and cooking pears, pears and more pears. In fact if anyone local would like some just shout!!
PainPalsBlog 