My last post was on my mother, having a huge bearing on firstly how I deal with things, I look back at her grace and dignity and wonder if I will ever be able emulate how she dealt with her years of chronic pain. You also learn lessons, you see it as I did from an outsider’s point of view, I was ignorant, and I didn’t know/realise how it was for her. But now I do.
So what about me?
I have been teetering on starting this blog then not, nervous about how it will make me feel, what do I write? I have never been a journal writer. I love writing, but I love writing things that make people laugh, or entertain them in some way. This is different I am writing purely for me and the situation is different. Somehow when I write funny be it factual or fiction, I can separate myself as if the woman with pain doesn’t exist, I still have my humour and character intact, though at times in deep dark moments it leaves me.
Taking a step forwards, maybe this way I will shed some layers by merely putting it down on paper or the ether so to speak and probably no one will find this blog anyway.
I used to live a fit and active life. Working as a holistic therapist, in Health Clubs, I worked out and rode horses, so was I guess fit and active. I had always suffered however on and off with back pain, but took it as part of a job hazard, but being surrounded by physios in the club, my therapists etc, we swapped and there was nothing that couldn’t be fixed.
Then I had children. During my second pregnancy I experienced horrendous pains from early on up my front, like a ripping cramp feeling. At the end of my pregnancy the pain would wipe me out and put me in hospital, but no one knew what it was. I also have synthesis pubis or however you spell it, that almost paled in to insignificance compared to the random pain.
The birth ended up being an emergency C-section, I had apparently lots of scar tissue inside attaching bits to bits and my womb ripped from this. I was in for a week, then returned to the gym eventually, working on my abdominals.
This is when the journey started, or maybe it started before and I simply didn’t know it. When doing abdominals suddenly a similar pain but further up swept across the right side of my chest and a hard lump would come out beneath my breast. It was like a ripping, hot, cramp feeling. It was excruciating and I couldn’t move. Even talking which moved the chest would start small contractions and I was petrified that I would set it off again. The area would remain sensitive to touch and active for about 3 weeks if I did nothing and then I would try to return to normal life. However after this I gave up exercise and slowly I started to reduce doing anything that would bring this on, which involved bending, lifting etc. So gradually daily activities became less which is hard when you have children and just ‘want to life normally’. I was under a chest specialist who thought ‘perhaps’ it was some rare hernia, but we never got to find out, though I doubt it was, because of what happened next.
After much active reduction I decide to go to the gym. I told them about my situation and ha 3 sessions. I did over reach on a chest pull and when I got home the next day, the pain was horrendous in my back, mirroring the area of the chest. The chest started to kick in to action and it was back and forth.
I became bed ridden for some weeks. My husband had to do everything for me. I was put on various medications which made me like a zombie, ill. I spent day after day in bed, then eventually I started to move around the house in spates, then outside.
I was put on a cocktail of drugs, 22 or so in a day at one time. I was still driving at this point, apparently it was safe? I would take the kids to school, come back and lie down, up again, take meds, do a bit then lie down. Life started to be dictated by my time spans as to how long I could remain upright and not in horrendous pain.
I then had spinal injections, it made no difference. They then decided to put me on lyrica to calm down nerve activity as well as pain killers and anti inflammatories. Not to mention anti constipation powders, stomach protecting pills etc.
Then my back went again after driving. I ended back in bed, the whole routine started again. I went through the stages of months working up to being around the house, getting outside, but no driving. Anything I do that involves sitting sets me off and using my arms and sitting a hideous combination.
I started to have Alexander sessions, these got me from being bent over to upright. It helped to re-educate the way I think about my body, my posture, my use of myself. I would recommend it to anyone with postural/pain issues.
The way the pain works on me is, I get the pain mid back, thorax area, then the nerves around my chest kick in, like hot fingers jabbing at me, until they meet at the front. Then they start pulling at the muscles, waking them up it seems and causing them to start rippling, that’s the only way I can describe it. Then the pulling starts, twisting and pulling around my body like a corset and eventually it spreads to my lower back. It gets to a point when my back feels like it just might snap.
So, where am I now?
I have spent a year of being dictated to by my pain. I cannot sit down for long still, if I manage an hour, I am in hideous pain after. I try it sometimes to see friends and keep some kind of outside contact, but it’s a major event for me and makes me panic totally beforehand not knowing how I will end up feeling.
I have now had spinal injections with a different pain clinic. I had MRI’s that showed a bulging disc in my thorax and lumbar spine, plus early arthritic changes in my lumbar and facet joint disease (early). However, they say because the discs aren’t pressing on a nerve it CAN’T be causing me pain.
What do I say to this? It mirrors the area and sure as hell something is causing the pain.
So I live with this undiagnosed invisible condition.
This new pain consultant has promised me that he will not discharge me until he finds out what is causing my issues. The spinal injections this time were as a form of diagnosis, i.e. if it does not work in one area, the issue isn’t there, if it works in another area, they know that that is where something is going on.
Did it work this time?
It has changed the pain, it’s not gone by any stretch of the imagination, but it has changed. I can now do more in the time slots I get.
I managed to get on a bus, hooorah, go to the local shopping area nearer by, taken I might add by my 11 yr old. Fancy that, being taken out by your 11 yr old.
My children have suffered so much over the years, I feel guilty, of course I do. They often say “if I had one wish in the world mummy it would be for your back to be better”. Or the other one is “mummy if I won a million pounds I could make your back better” Sometimes it makes me cry when they say this.
So, now I have done some catching up on things, I can concentrate on the here and now and random thoughts/feelings that no doubt will occupy my mind and body.
If anyone out there is actually reading this, I congratulate you as it was long and thank you.
Some days, I feel like this…
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