Some history

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…

Image

©2014 All Rights Reserved – Justine @ It’s a lonely place

Eclectic odds n sods Living in East Sheen co uk

Itisalonelyplace.wordpress.com
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7 thoughts on “Some history

  1. I read all the way through my dear. I can imagine one of the worst things is being undiagnosed! Worrying about what is wrong can be as draining as pain sometimes. My journey of pain is much less, but at least I can relate to some degree. I had a quick onset of arthritis in my left hip summer of 2011 and it progressed at a very fast rate. It went undiagnosed for 8 months and I went through chiropractic and alternative medicines and massage to no avail. And the pain got more and more requiring a cane a year later. By the time I headed to an orthopedic surgeon I could only spend an hour and a half on my feet before I was exhausted. (And I know what you mean about having to take constipation meds to counteract the effects of the pain meds!) My surgeon offered me the option of having a complete hip replacement. I jumped at the chance. This week I celebrate 1 year with my new hip. I am pain free (and have been since I got over the surgery pain). I do have to be careful what I eat however, as gluten and wheat especially trigger joint pain in other joints and I really don’t want arthritis to develop anywhere else. Anyway, long story shorter… I am mobile and pain free, working out and about ready to try to run (still nervous about that 😉 ) I can only wish with all my heart the same for you! I promise, looking at the wonders in your life can only help, as they make everything, even chronic pain, easier.
    meghan

    1. Thank you firebonnet for your words 🙂 I am sooo glad you are pain free and mobile that makes me smile alot. I have heard of quite a few people having hip replacements and it seems to work wonders for most, giving them a new lease of life and thats applied to all age ranges. As for arthritis, it hits us doesn’t it, I have early arthritic changes in my lower back, but then I only know this from a MRI, I’ve been told people walk around with this for years and bulging discs and never know about it, nor does it effect them however hindsight and prevention are a good thing. I wish I could find some alternatives for all the medicines I’m on, I am back to the pain clinic and will bring this up. I have heard that certain diets also like you mention can help reduce pain. I tried wheat free, that was difficult but made me eat far healthier, I need to lose weight too which has piled on from inactivity and the pills, but I am determined to get there 🙂

  2. After reading your recent gratefulness post I read this page. I can’t imagine living with this much pain. I think you are incredibly brave and for you to be able to find and take positive attitudes in this situation is remarkable. YOU are remarkable.

    I know that you see you are learning lots as the result of this experience with chronic pain. Think about the possibility that your children are also meant to have a mom with chronic pain, at least for awhile, because there are important things for THEM to learn. These learnings will serve them and will serve others throughout their lifetimes. When you feel guilty about them, remember there is a higher purpose in all things, or at least that is what I believe to be true.

    I am so glad you found a physician that is committed to you and hope you and he find all of the missing pieces soon.

  3. Thank you Karuna, I’m not great at taking compliments so am blushing now re the remarkable statement!

    I sat and pondered what you said about my children meant to have a mom with chronic pain, upon reading it initially it didn’t sit well, I think that a natural reaction, but maybe your right. Like all things life is sent to test us, to educate us in some way.

    Both my children as of late have been diagnosed with differing learning difficulties, dypraxia, dyslexia, tics etc and this whole thing has taught me to self reflect on my behaviour, insecurities, failings as well as strengths etc as a person and or parent and with their diagnosis it has been even more testing, but again a learning curve.

    I don’t think if I had this ‘mindfulness’ if that is what it is called that maybe I wouldn’t be able to emotionally support them the way I am trying to right now, even if I can’t physically support them as well, it is the emotional needs that need to be met first I think?

    I hope the Consultant gets to the bottom of my pain, however the zero balancing therapist is helping me a lot which is great because it is far more pleasurable than spinal injections, hehe, big hugs and thank you for commenting, I look forward to keeping in contact x

  4. As a psychotherapist, I can tell you that supporting your kids emotionally is the MOST important support they can have. Children are resilient. They can get through traumas, big and small, when they have parents who will listen and support them as they walk their journeys. So for now you may not be able to physically support them, but you are there for them in the most important way.

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