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I could write so much about my weekend, which was spent mostly outdoors. Yesterday on Porthcothan Beach in Cornwall (didn’t even make it to paddle in the sea, it was a loooong way off) and today at a Mary Budding Trust charity country manor walk. But I’m so tired, from the relentless pain that only increases by doing things I love, that I threw up this evening waiting for dinner.
Now I am in bed waaaaay past my bedtime, hurting too much to sleep, and too tired to write; needing more painkillers but with no energy to get back up to fetch them, or to locate my mobile phone – that I had thrown somewhere on the end of the bed some other time when i had no energy to put it on my bedside table – to call R and ask if he can get some for me. It’s is why I have abandoned this blog for so long; I just cannot get as far as opening it let alone posting the million thoughts that race through my brain, waking me at 4am.
That’s what chronic pain does; it wipes my energy levels so that there’s nothing left. Everything I do has to be planned. And everything I do has payback, physically and mentally. As I write this, I’m happy that I have managed to have an active weekend, with the enormous help from close friends and R to enable me to do so, and worried about the consequences of having a life this weekend affecting my week at work.
My eyes are drooping. My head hurts. I am going to make that call to R so that might actually get some sleep…
Today is a special day. It’s the end of summer, today, night and day are of equal length, and from now on we will see the nights getting longer and the mornings getting colder – a chill in the air that means our toes linger out of the duvet a for few seconds before the rest of our body follows – the leaves are dancing and gliding from trees, full of colour – gold, copper, red – beautiful as they drift into the rivers and onto the grass.
R and I got married on the Autumn Equinox 7 years ago. Today is therefore the 7 year anniversary of our marriage. Copper is also the precious material to celebrate seven years of marriage, fitting as a beautiful autumnal colour. We got married in a cave, and danced outside on a farm on one of the last warm days of the year.
Happy Autumn Equinox.
“Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns.” — George Eliot
I have been absent. I have been in a bad place. A roller coaster ride of attempting recovery from chronic back pain and sliding back into the darkness of chronic back pain. I am not going to talk about details now, although I will at some point.
But, I have had a particularly negative experience at a music festival, which happened as I attempted to live a life that is not really my own, while trying desperately to forget that despite surgery, and rehabilitation, and time, I am probably not going to ‘recover’ from this chronic back pain. As the enormity of how hard it is to do things that ‘normal’ people do hit me like a brick, I was right up close to the appalling discrimination of people with disabilities a way I have not been before. I now know that the reason for this lack of experience has been because I have shut myself away from the real world and not participated in it any more than has been essential to survive, because that world doesn’t really belong to me any more. Except, it does now. I am reclaiming it.
I am going to relive some of this experience with you in my next post, and I will share some of my future experiences as I come across disability discrimination on a daily basis, and yet also find amazing people who try to be our advocates. I will use my time blathering on to do my little bit to help make access, treatment and attitudes to people with disabilities better, nicer, kinder. So that it is not so hard, it’s not so embarrassing and it’s not so fucking difficult to do the things that we used to do. Like go to a music festival.
I am dedicating the future of this blog to my Chronic Back Pain Suffering Mumsnetters who have been my rock in the last couple of years, in the last year in particular. They have picked me up when I’ve been on the floor. They have cheered me up when I have been unhappy. They understand when no-one else does. They have shared their own experiences. They have held my hand when I have been unable to cope. with the relentlessness of this fucking chronic back pain.
At 3:58pm on 30th September 2013 a beautiful baby girl was born to an amazing woman and her husband. And I was part of the most magical experience I have ever been witness to outside of the birth of my own two children.
My best friend and her husband have tried for a long time to have a child; IVF was not successful, and for a while they thought it would never happen. But, it has! and I am so lucky to have been part of it. I was the hand-holder, the coffee-bringer, the encouragement as it all became so tiring she thought she could not carry on, and finally the additional leg holder as my strong and courageous friend pushed her baby into the hands of the midwife. I saw the baby’s head enter the world with the cord wrapped around her tiny neck three times, and watched with breath held fast as the midwife gently unwrapped it before the final pushes saw baby wriggle and yelp. I saw the absolute joy in the faces of mum and dad as they were told it was a girl, and as the father held his baby for the first time, grinning like his heart would break. As the baby needed some gentle encouragement to breathe, I was once again the hand holder as mum had the final less exciting aspects of birth dealt with.
Mum to be worked so hard. She didn’t even realise how hard she worked. She thought she couldn’t do it. She didn’t believe that she was creating a miracle with each painful push, even though it felt like nothing was happening.
Baby is beautiful; smooth skin, beautiful curled fingers, a good head of hair, wide alert eyes and a wonderful cry. Mother is tired, beyond words, and dad is pretty shattered too! I left them to be a family as grandparents arrived, proud to have been part of the circle of life and excited about being such an important part of this baby’s life.
I am making steady progress recovering from my micro-discectomy, which took place 6 weeks ago now. The scar has healed well, I am mostly standing straighter and the sciatic pain in my left leg has continued to improve significantly. The decision not to decompress the right side of my L5/S1 lumbar disc has not gone unnoticed though; there is pain on my right side. I am at this stage unclear if this pain was always there but not noticeable due to extent of my left sided pain, or if this has increased since having the micro-discectomy. I personally feel like it has increased a little, and there has been the odd day where the progression of pain has followed a similar pattern as that of my left leg, but it’s not continuous so I shan’t complain (much). I have had a couple of frightening days, in particular one evening where my left leg started hurting in exactly the same way as it had on my bad days prior to the micro-disctectomy; my calf became sore, my ankle tightened and my foot went numb and fuzzy, my entire leg became weak, with my hip feeling like it would snap. An odd and altered sensation in my groin area meant I almost went to A&E and I felt scared it had prolapsed again. But, after about 2 hours of panic, and a reasonable sleep, it felt better in the morning. My back still ‘pops’ though. I have had several horrible moments when I have bent over ever so slightly, reaching forward or something similar and found myself stuck, having to hold on to something to get myself straight again. I have had several scary moments when I have bent down using my legs to take the wait as I have been told to do, to find that my back has wobbled on the way down and I am stuck in that position. I have also had some frightening moments where my back has completely given way and I have found my legs having to collapse due to the pain and found myself stuck on the floor. In between these more serious moments (probably once a day) I am getting many times when my back ‘pops’, or grinds, I can feel something moving. I suspect this has always happened, but prior to my micro-discectomy, the movement of my vertebrae would result in my disc being pushed out more and hitting my sciatic nerve, with a cascading effect of inflammation, pain, and a period of bed rest. Now, I am just trying to ignore it. I am disappointed to note that I do not get to see the neurosurgeon for 3 MONTHS! So, someone cuts open my spine, pulls and prods me around near my spinal cord and nerve bundles, closes me up, sends me home and I see no-one for 3 MONTHS! I had been told by the Registrar who discharged me that my neurosurgeon would see me in 6 weeks. My GP thought I would be seen in 6 weeks. Yet, having not received an appointment by 5 weeks, I have been informed by the appointments team and the Neurosurgeon‘s secretary (curtly) that 3 months unless there is a clinical need to see him earlier. My GP also said that he has received no report regarding my surgery and so, had I not shown him my lovely scar he would never have known! It’s a shame as my continued back going means that when I am on my own I have to continue taking my crutch in case I hit an uneven patch. I have to take it anywhere there might be uneven surface as anything other than flat office floors etc have my back collapsing. It’s annoying more than painful; although it is painful too, it’s still nothing compared to how much sciatic pain I had before my micro-discectomy, so won’t complain too much.
Doing nothing is a skill; one that I am really not so good at. I am not a very good patient while recovering from my microdiscectomy. I am not great at the art of staying in bed. I have done too much really and today I am suffering for it. To be honest I have had increased pain for a few days, having spent a lot of time outdoors on Sunday and getting up and down from the ground; I felt fine at the time, but not now! Since then, pain has crept back in and I am now left with nagging aching nerve pain down both legs but in particular my left leg. I also have some localised pain that reminds of how it felt as I came out of surgery, really internal. It also feels like it might ‘go’ again at any time and I have to remind myself that this part of my back pain, the misaligned vertebrae, that is not fixed.
I also need to remind myself that a microdiscectomy sounds like a simple surgical procedure but they did cut right down into my back to my spine, they did cut muscles, remove bone and push ligaments and my sciatic nerve away (maybe others too), and cut away the disc, leaving it ‘open’; it’s going to take time to heal! Yes! I was told this, I was told 4-6 weeks recovery, but, I felt so good in the first 10 days; I felt like the 4-6 weeks were cautionary and that I was recovering significantly faster than that! I even reduced my codeine as I didn’t need so much of it and for some of the day was managing fine with just paracetemol. I have read on some back pain specialist forums that increase in nerve pain around 2 weeks after microdiscectomy is normal as blood flows back to the nerve which has been restricted for a while; it’s also been irritated more by the surgeon, and allow for as long to recover as it was compressed for. So, I am not worried that the pain means something more sinister. I just feel rather daft for running before I could walk so to speak. I was thinking I would be ready to go for a swim on friday, I have been walking a lot and have started bending a little – I mean come on, R is doing a sterling job at looking after me, the children and trying to keep on top of our home, but he is no miracle worker and things on the floor are dangerous, and bloody annoying! – but, feel like I have taken a big step backwards so am slowing right back down again.
My advice for anyone having a microdiscectomy is – you WILL feel fabulous for the first week, you will feel like it has gone brilliantly and that means you are recovering quicker than everyone thought you would. Please slow it down, and remind yourself that your pain is not a guide right now, that reduced pain will make you think you can and therefore should be doing more. You used to be guided by your pain levels but now you have to tell yourself not to do something like picking washing up off the floor, pulling chairs out from the table. Please take it really, really slowly even if you feel ok, as a miscrodiscectomy is NOT a simple non-evasive procedure for you. It’s simple for the surgeon performing it, but it’s still major surgery for your back. You will just have to learn to read more books, watch more films, catch up on some fabulous blogs and Do Nothing!
I am not going to moan about how much pain I am in today, or how slow the NHS system is. I am not going to complain that I have spent 18 months banging my head against a virtual brick wall to get someone to fix me. I am not even going to gripe about having to spend all day today at hospital, after a 9am neurosurgery appointment was late by 20 mins, and then having to wait 1 hour for an unplanned x-ray, having to wait for what I was told would be 2 hours in the planned assessment team, but turned out to be 4 hours. I am certainly not going to bang on about not being to go to work at all having told them I would be in at about 10:30am, or using up all my mobile phone battery reading mumsnet posts and not being able to call my husband to get me (had to use a payphone, how old fashioned is that?).
No. Not moaning. Because, I have FINALLY been put on my neurosurgeon’s waiting list for discectomy. Finally, someone has said they can do something to fix me. YEY! Ok, he has not given me guarantees, but the odds are pretty good though I think – 80/90% chance of an 80/90% improvement in leg pain. But, only a 15% chance of any improvement in my back pain. That’s not so good, but I was expecting him to tell me something along those lines so not a surprise.
I liked this neurosurgeon. He was pleasing on the eye which is always helpful, and spoke to me, not at me. He was pretty honest, but was interested in my view about it all. I didn’t feel rushed and ignored like I have with so many other health professionals, a number on a list to be spoken to and ticked off/kicked out. I was expecting to be talked over and the decision already made; pleasantly surprised.
The recent MRI shows that the vertebrae of L5 (the top one of the L5/S1 section) is out of alignment, something called Spondylosisthesis – it’s sort of pushed forward over the top of the vertebrae below and this is probably why the disc prolapsed. He doesn’t know why this misalignment happened – could be injury, could just be the way my spine developed/a joint stopped working so well. The disc is now bulging into the nerve space, and there is still an annular tear which may well have been the shower curtain hitting my back (read my previous post about the theory of how the tear got there), but the disc would probably have already been bulging at that point and so an ‘easy’ target.
Mr Neurosurgeon said he would not normally enter into the idea of spinal fusion with a prolapse such as mine and right at this moment he is not intending to do so. He does not believe the success of fusion generally is good enough to put someone my age through that trauma, and that back pain itself can be caused by many many things and so fusing is too random. However, this vertebrae that is not in the right place, along with the fact that the entire rest of my spine is in perfect condition with little sign of degeneration, indicates that there is a large enough coincidence between me having severe localised back pain, my back ‘going’ regularly and the potential instability of the vertebrae. For that reason he is considering fusion.
So I have had some x-rays on my spine with me moving around in different positions (ouch!) to see if the segment is moving at all. Pretty undignified it was too, dressed in the silly gown with a gaping back, and having to reverse into the loo else show my butt to the very full waiting room. If the segment moves, he will review his decision and consider fusing the vertebrae when he preforms the discectomy, if no movement, he will wait and try the discectomy first. If the back keeps going after the op and recovery (a good amount of time) he will fuse the spine. AND he told me how he would do it. OUCH again.
Recovery is quick for the discectomy – 4 weeks if I’m lucky! If all goes well, I could be bodyboarding within 8-10 weeks – maybe even this summer!
My flat is my favourite place to be right now, shall I tell you why and how? I don’t have too much. ok, perhaps too much clutter. but material things, well they don’t really matter. I can’t open some cupboards as the hinges are broke, the kitchen wall’s falling down and the garden (yard) is a joke. We’ve not fixed the skirting and the kids room needs some paint. But we have other priorities, stressed? well we ain’t. So what do I love about this place that is mine? I sleep here, I love here, where I spend all my time. My children were raised here, memories were formed, it’s cosy and comfy and snug and it’s warm. We have a door with a lock to shut the world out there. We have colour and brightness and laughter and cheer. There are books everywhere, cooking smells and incense, drums and guitars, music and fun. Toys are not kept in one place hidden, there is no room to which entry’s forbidden. We have plenty of space with high ceilings, nooks and crannies, room to play hide and seek, room to put up visiting granny. Big bay windows that let me try to grow plants in pots, although if I’m honest, green-fingered, no, I’m not. I feel safe here, I belong here, I don’t want to leave this place, would not trade it in for lots more space. It’s my home, the kids’ home, R’s home, and also our cats’. There is Nowhere I want to be more than snuggled up in this flat.
– For My Summer Girl aged 6 and a half.
It was a very cold crisp day, a Wednesday, at Dartmouth Zoo. As R dropped me off in the disabled parking area, I was met with the sound of African Beats. It was very early for such loud music but welcomed the entrancing sounds as I shuffled into the visitors area and stood in the long queue waiting for coffee.
I felt out of place. I felt like I didn’t know anyone, felt exposed and my (what I am now recognising as a) disability advertised as if I was shouting it out through a megaphone, people glancing in my direction as I stood in discomfort for what seemed like hours.
This was my work conference. I had been back at work for two days after a 6 week absence. I already felt alienated as I had been off so long, but I had been determined to return. 6 weeks is too long and the lack of enthusiasm, excitement or pleasure to see me demonstrated that my relationship with colleagues had shifted from me being an equal member of the team to a resource burden. And, as I stood there sandwiched between two managers and the Big Boss from out of area, I felt more alien to the group of people than I had ever felt.
I wanted to cry. I wanted to ask R to come back and take me home. I knew then that I was not ready to be back at work. Every step I took continued to shout out that I was in pain and I was met with looks of pity and sympathy, but very little actual words. People have stopped knowing what to say.
I stupidly didn’t take my crutch and regretted that almost immediately. I am not sure I know fully know why yet, but it is more than a physical crutch. It gives me a silent explanation of the pain pain on my face, it makes my hobbling and ginger steps less obvious.
Later, as I sat to eat a hastily warmed through chilli as my colleagues didn’t expect me to turn up so didn’t book me any lunch, a colleague who was sat at the front of the conference noted that he saw me walking very carefully and painfully to the toilet halfway through the conference, and what that told me was – if he saw, then everyone else saw – and not for the first time I felt like crying.
As the conference ended, I found myself walking downhill towards the work bus that would be taking me back home, my lift from the morning not available. I found myself walking slowly, alone down that hill as people rushed past me, in twos or threes. I moved to one side as more than one car full of my colleagues drove past me down the long uneven walk, not stopping to offer me a lift to the bus. And I realised that things won’t ever be the same at work again. I sat next to a colleague in silence on the way home for 20 minutes as for the final time that day I held back tears realising yet again that Equality Acts cannot make people treat others fairly.
I didn’t go to work this week. Following that horrendous experience of pain, ignorance, alienation and hostility as the Resource Burden, I realised that I simply cannot cope with being in that much pain and yet still show I am worth the wage I am being paid. I realised I cannot work while my pain is so obvious people literally cross the road from me at work.
It was with trepidation that I made the call to the GP to ask for my Drop In The Ocean dose of pregabalin, which I started weeks ago but have been to afraid to increase, be raised from 25mg to 50mg. I have kicked against the ‘zombie drug’ for such a long time as I cannot bear the feeling of sleepiness, of tongue tie and head clouds, of my eyes drooping, my appetite dropping and my energy being zapped.
But, nor can I work under the circumstances that I found myself in last week, where I felt embarrassed every time I stood up and had to walk, where my role has been pretty much decimated. Quitting work is not an option, not least because I need the money, but also because I have worked so hard to have a career which has already been thwarted and slowed down by becoming a mother. I am not prepared to allow the ignorance and resentments of others to stop me from doing my job. So I have to make sure I can do my job as well as I possibly can, and be at work for as much as I possibly can.
And that means losing a little bit of me to medication.