#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!
My beautiful daughter stood up and gave a talk with this title at the end of last week. Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!). What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog. No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.
initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened. Hopefully it made them think for just a few minutes.
Today I think about the impact of hidden illness on body image and self esteem. The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted. On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list. Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure. Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often. To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!! But writing seriously, my own self worth has shifted significantly. I no longer feel like the person that I was supposed to be. Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??
Many are training in law and are able to help themselves and their fellow inmates, such as the murderer whose “victim” was found alive and well after 12 years but it took a further 6 years to release him. Or Susan, the battered wife who found herself on death row after she stood up to and killed her husband. With Alexander’s encouragment, she studied law by correspondence with the University of London, represented herself at appeal and had her sentence reduced from the death sentence to years in jail. She currently writes pleas for fellow prisoners and when a top African judge presented her with her qualification, she was told to apply to become a judge when she leaves prison.
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!!
I have been determined to live life as before and I so desperately want to be able to go out every day as when I was working, socialise, do what other people do. But this week it felt like my wretched body let me down physically and mentally – Ehlers Danlos and chronic pain let me down. I feel so frustrated: that I can’t have arrange a full week; that I felt panicked at the thought of a trip to the London theatre; that in the theatre I had to ask to swap seats as the draught from a fire exit door caused excruciating pain; that as the week progressed the exhaustion became more and more extreme; that by Thursday morning my physio was sticking needles into a shoulder muscle so tight from recurrent dislocations and stress; and that I constantly apologised and the tears flowed nightly.
I hate to move the spotlight back to me, but couldn’t help to notice again at said race night, how people don’t know how to react to the chronically ill. (No, I’m afraid that is not me – I don’t look that good at any time!) I don’t usually describe myself as “ill”…….I don’t think of myself as “ill”, and I am acutely aware that “friends” don’t know how to react to my disability now. We know that others socialise without us now, and who can blame them? When a 46 year old woman has to have her mum help her in the
loo – although they were primary school toilets and very close to the ground – no wonder I needed help to sit down and then get up off the blinking thing again!
scare hubbie and daughter by passing out and then stopping breathing – although as middle son would now point out in his very loud, deep voice I had to go and start again. Charming!!
PainPalsBlog 