Another Pain & farewell to brain fog

#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

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!images (1)

Busy, busy, always busy

This last week I have been trying to carry on at a normal pace, almost as if I hadn’t had implant surgery 2 months ago.  So I attended a governance half day conference, started up the year 6 club I run, attended a meeting at each of the schools where I sit on committees, observer-the-winters-tale-photo-by-johan-perssonsaw Kenneth Branagh’s A Winters Tale live at our cinema ( long but a fantastic cast – particularly the young stars, Tom Bateman and Jessie Buckley) and attended St Thomas’ outpatients.  Needless to say, I completely overdid it and then made a birthday cake for my nephew, which we delivered to Witney at the weekend.  I had forgotten what germ pools children’s birthday parties can be, but after time spent in the soft play barn my brother, Duncan and I have all gone down with the lergy.  Only my sister in law has escaped….so far!

My appointment was in the joint Pain and Urology clinic with a view to positioning an additional electrode lead to attempt to give my bladder back some sensation.  We have decided though to leave well alone at the moment, as there are no guarantees that a further procedure would not cause lead migration and electrode movement for the existing implant.  Equally there is no guarantee that the procedure would even help my waterworks!  No brainer… I must now try to retrain my brain/bladder,  otherwise known as potty training.  Of course this should become easier as I continue to reduce the drugs as another side effect of strong opioids is retention.

Where does gain morph back into pain?  I saw a different CNS on this occasion and was told that I’m doing “brilliantly”, but that I’m probably expecting too much of myself too soon.  This was the first time that we were told that it takes a good 6 months for the body to adjust and for the person to become adept at using the scs.  All my concerns about increasing levels, struggling to cover my foot pain in the cold and leaving the stimulator on for too long were swept aside.  I left feeling a great deal happier.

I met a young mum at the weekend – also at the birthday party – who had also received a scs recently.  Funny really, after my appointment for a trial in bladder stimulation, as she has a sacral stimulator for function rather than pain control.  She is in the forces and told us how she has served in Afghanistan and Iraq, yet it was the birth of her first child that has left her body with irreparable internal damage. images (5) The stimulator has been implanted to help her regain some function of her bladder and bowels – it seems almost beyond belief that in a developed country a young woman can still experience this level of damage and dysfunction as a result of childbirth.  I am full of admiration as not only has she had another child, but she remains in the forces whilst juggling life as a wife & mum of 2 small children, living with this unseen disability.

As for me, well a hacking cough, headache and fever do not combine well with back pain.  In fact the scs has almost made my back and leg pain even harder to cope with at times today.  I wonder why this should be?  I think I’ll decamp to the student’s bedroom tonight (keep encouraging him to take more of his things to his uni flat, but still he comes back.  Must change the locks…….kidding, maybe) as we haven’t quite got our coughing in unison yet and will toss & turn all night for the wrong reason!images (6)