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.
I know what my problem is. Why I am not settled with this back pain business. I am not using any energy. No running. No swimming. No kayaking. No jumping up and down with the children, dancing around the front room. I have TOO MUCH ENERGY!
What the hell am I meant to do with it all? I really, really want to burn some calories, I want to exercise until it hurts, to sweat with expelled energy. I want to run in the rain, through the industrial estate near where I live and to the harbour, across the lock and to the sea while listening to Bruce Springsteen’s Born To Run.
People keep telling me that I have to learn to do ‘hew hobbies’, find things I can do from an armchair, and yes, I do. But, what about my energy?! what do I do with it?
It’s just dawned on me like a huge smack in the face that much of my emotional wellbeing issues are lack of physical exertion. Normally I do nothing slowly, I get up late for work, run around like a headless chicken and at work on time. I run up and down stairs (we have a lot of them) in and out of the house, I bounce and charge everywhere, every second of the day. I clean my teeth while brushing my hair and pulling on my socks, I talk fast, think fast, DO fast.
And now. Stopped. Dead. In it’s tracks. Everything is so Slow now. Getting dressed, moving up and down stairs, getting up and down from my sofa. And yes I am trying to do reverse crunches (reverse sit-ups, fab for 6-pack!) but they are not exactly calorie crunching are they?
So, Tell me, what do you with your unspent energy when you are in pain, or unable to do the things you normally do for other reasons? Give me your top tips for getting rid of this overwhelming desire to just take shit ton of drugs and run, and I will write a blog with all your suggestions.
I have just read an article about how chronic pain changes a person. And, once again the tears flow as I write. I have pretty much stopped talking to people in real life about my back pain. People in real life have pretty much stopped asking. I am walking straight and I have medication. Some of that medication even makes me a bit happier as a side effect right?
It reminds me a little of when my mum died a few years ago. After a few weeks/months people stopped asking how I was, because I was over it right? Well, the development of this chronic pain, it’s quite a bit like grieving. The initial shock of it, the raw pain of it is hard to manage but people were there to help me cope in the early days when the pain was visible. Then followed the process of trying come to terms with it, learning to accept that things are not the same anymore, that an important part of my life has been lost. And in time, that support disappeared as it had all become invisible, and people don’t want to hear it anymore, if it seems ok, best not to ask, or so it seems. I have struggled to keep myself going over the last 10 months, and it is not over, and just like grieving I think I am coping then something reminds me of what I am missing, a little thing that crops up that floors me all over agin. But it has now just conveniently been swept under the carpet of drugs, and my rotten mood and distancing from others is put down to the medication. The medication has changed me, right?
I had almost stopped crying for a while. But then, I read this article that I am going to post, and it is just like I have had a conversation with someone who understands again, someone who knows, who feels it, and who has got it right. It is like I have written bits of it. And it has opened the floodgates again as even though this was not written for me, or about me, and written before I even had chronic pain, it feels like for just a moment, today, someone was listening. Even though they weren’t.
I want to show it to all my friends, my family, my work colleagues, my GP, my husband and make them read it. I want to shout at them ‘you see?! it is not my fault I have changed so much, that I am so irritable and miserable and depressed. How can a stranger understand but not you?’
And the tears are now streaming down my face, and I can’t stop them. And don’t know if I want to stop them right now. I will post the article when I have composed myself.
The HallowEden Little Monster’s Ball was amazing. But my back is stiff and sore today. I have some nerve pain and am slightly stooped. R has been out helping a friend decorate their house and is then off to work. So we have watched many films, ending with the final film now on – the wonderful Arietty – to finish off our Lazy Thursday.
The pain is worth it. I stopped the nerve blocking pain for a couple of days to get rid of the foggy head. Then, yesterday afternoon after finishing work, I picked up my two Witch’s Kittens, and a Witch’s Cat, straightened my Very Own Cat Ears and so began our Halloween Road Trip.
In the howling wind and rain we drove into Deepest Darkest Cornwall eating spooky treats while the wipers swished and swashed the torrential rain away. As we drove slowly into the flooded roads of the Cornish Valley we vaguely considered turning back. But, no, it was meant to be like this surely, on Halloween?
30 minutes away from our final destination and the Biggest Witch’s Kitten started the ‘are we there yet?’ chant. And finally we arrived at The HallowEden Little Monster’s Ball. The Eden Project is an amazing sight from the hill any day of the week and our excitement rose seeing it in front of us as we walked the steep descent in the downpour toward the huge domes, following many other little witches, ghosts, cats and ghouls who had come out to wander the bios and spook people.
The youngest Witch’s Kitten had a catnap in the car and woke up grumpy, refused to walk. I left the stroller at home as it usually means pushing that and chasing the super fast kitkit. But not in the rain. He insisted on being carried for a reasonable amount of our trip, although he certainly had a whole lot of running done too.
The place was fantastic, with hanging lanterns and candles, amazing Steam Punk vampires, wizards and witches walking around, owls to stroke, bats to look at. We took a walk through the spooky pitch black rainforest with wolves howling and stumbled upon an old haunted Malaysian House, we made magic wands with Dragon Snot and Unicorn Snot and Fairy Dust. We ate Eyeball Pizza and Toffee Apples, and drank hot chocolate with marshmallow bobbing on the surface, had our faces painted and finished by listening to The Story Teller in the Wishcraft Tent, spinning amazing ghost stories – an old wizardy man with white hair and a tall wooden staff, sitting by in the most amazing grand wooden carved throne, with a couldron that started to produce white wisps of smoke when the children waved their wands. I watched the grim reaper walking through the crowds, towering, dark scary presence stopping people in their tracks, before making the slow ascent back to the car and driving back through the valley with Kittens whose gentle snores filled the car before we got out of Eden.
But, there is no better way to recover from back pain than double dose painkillers, popcorn, blankets and back to back films with my children before early nights for all.
Last night my two-almost-three year old boy snuggled himself on my side of the bed. By the time I get to bed, he is stretched across the bed, but every now and then rolls over to the edge. I spend several hours tossing and turning only half asleep waiting for the ‘thud’ of him falling off the bed that is a million times bigger than him. By the time R returns from his late night out, Roo has been gently carried back to his own bed, eyes shut, head in my neck and as I tuck him under his duvet he makes a feeble effort to show his disapproval ‘i don’t wan go to my bed, I wan…zzzzzzzz’. 5:00am and he has climbed back between us. Next thing I know is Bella cuddled next to me hanging off the bed on the other side of me, talking non-stop. I figure it must be almost 7am due to her incessant questions and chatter. I glance at the clock after 10 minutes or so and find it is 5.45am. I am So Not Impressed.
3 hours and 15 minutes, two cups of coffee and a long shower later I am on the wrong bus going around the houses to take 25 minutes to drive what should be a 10 minute journey to work, for my first day after 5 weeks off sick due to sciatic nerve pain. It is a good job really as the other bus drops me outside The Hut where I would find it difficult to walk past without buying a Skinny Latte Extra Shot. That would be 4 caffeine shots before work and I am going to be wired enough anyway with the variety of painkillers I have taken with the first two, along with the lasting effects of amitriptyline from my nightly dose.
Wow! My office is bright! and noisy! By 10am my head is pounding with the lights, noise, and the 350 emails I have to read. I am not sure if this is the medication or just shock at being back at work after the relatively sedate time off sick. My boss comments that I am looking better than she has seen me for ages. Repeats this several times and says that the time off has done me good. She is trying to work out what is different. Make Up, I tell her. I am wearing make-up. I actually spent 30 minutes plastering it on in a way to make it look like I was wearing not a jot of make up apart from lipgloss and mascara, disguising the heavily medicated eyelids that even my thick framed glasses cannot hide and the dark circles and red blotchy skin. Well, it has worked I find out as several colleagues comment on how well I look. I am not sure whether that means I always looked rough before, or only when I was looking so ill with pain, but either way, they really do seem genuinely surprised that I look well. I decide on the latter and plaster on a beaming smile for every comment I get.
I sit on my old, alleged back pain specialist chair. This is not the one that was recommended by the back specialist assessment, the one that I later find out is going to cost £800+. This is the chair they have decided will do after all despite being recommended otherwise (I can’t figure out why they think this…). Except, when I sit in it and the pins and needles shoot from my left foot straight up my leg and into my buttock, my boss quickly changes her mind and 20 minutes later the approval for the new chair has been signed and sent off. But, they still won’t let me have red leather or an iPod charger. However it does recline. Bonus.
By the time I leave the office I am limping slightly and my head is pounding from the excessively fast-paced office, from struggling to focus on the computer screens, having to engage with people and on the whole being unused to Life On the Outside on my pain meds.
I am now watching Black Beauty with my children, tired but relieved that I got through my first day back with relatively little trouble and without falling asleep or slurring my words in front of my colleagues. But I really must get myself some of those noise blocking ear protectors.
Shall I have a glass of wine to celebrate?
I was going to write an informative post about what I am learning relating to employment and back problems – being recognised as having a disability at work, employment rights and the Equality Act. Seeing as I am returning to work tomorrow I felt it was an apt topic.
However, this evening, as I rocked out to Ozzfest on Guitar Hero, I felt hot and sweaty and not because I Rock. The indigestion that has plagued me all day finally got the better of me – almost immediately after I chewed two generic brand chalky tablets to alleviate it, I threw up that and the chocolate I ate after our woodland walk.
Yesterday morning I also threw up, after eating two small delicious Rachel’s Organic Yoghurt pots. Again, indigestion, followed quite quickly by me saying hello to God through the great white telephone and that time I had a lot to say to him.
Now the next bit is Too Much Information. On both occasions there were lots and lots of very small dark brown/black spots in my vomit, and I suspect it is blood. It is often described as looking like coffee grounds, but this is not entirely accurate – mine looked rather like toast flakes. And actually I have been sick a few times over the last few weeks and I always have had dark bits of toast in it, which did make me raise my eyes slightly, but as I had actually eaten toast, it seemed logical that if it looked like toast, maybe it was in fact toast. Which would be a great explanation for these flakes, except I have not eaten toast all weekend.
R is not too concerned, took it as an excuse to tell me I am not eating properly, I checked on the NHS direct online and their survey said ‘straight to A&E’. Sod That. They say that to everything. ‘The Witches’ as R refers to them, they said call Out of Hours but they also said it could also be the Omeprazol turning brown in my stomach. So that is what I have decided it is, as I don’t want to go to hospital tonight only to be sent home, nor do I want to call OOH who will tell me to go see them at the hospital, and then send me home. I am seeing me good friend the GP tomorrow anyway and discuss it then.
It is what I have been half expecting having taken the NSAID Diclofenac daily since christmas, and only being put on the acid reducing Omeprazol in the last couple of months. In theory I am aware of the potential risks of taking long-term Diclofenac as it increases the production of acid in the stomach and therefore increases the risk of burning through the stomach lining, causing a stomach bleed or an ulcer. But in practice it slips my mind and I have to be honest and say I sometimes forget to take the Omeprazol. Also, due to my reduced appetite I sometimes skip breakfast which I know is a Bad Habit and makes this entire thing my Own Stupid Fault.
I know I should be more concerned than I appear to be. But, I guess there has been so much going on and so much ignored I am sceptical about putting my health in the hands of the professionals just to be sent packing yet again. And, if this is blood and if it is caused by the Diclofenac, I will probably have to come off all NSAIDS for good. Then I will be Actually Screwed. I threw up all my meds yesterday morning, and by the afternoon I started to get a stiff back and pain in my back and legs. I tried coming of Diclofenac a while ago as I don’t want to take them due to all the long-term risks, and clearly whatever is Going On Inside has not gone away as without them I cannot stand straight due to the inflammation causing back pain and sciatic pain in abundance. I guess my enthusiasm for the anti-inflammatory diet might be re-ignited very soon.
Right now I am in much less pain with my prolapsed and torn lumbar disc than I have been for a long time, yet unfortunately the side affects bring their own issues such as this, me walking into things, constant tiredness, loss of appetite. I would like to just go back to normal now please. No drugs. No pain. Just me. Thanks.
I am writing in response to the fabulous post in ‘comments’ by runawaycerbera on my last post ‘my husband stabbed my leg!’ She has spoken about her own experiences with backpain in such detail, I felt my answer to her was so long and in turn detailed that it should be written for people to easily read. Maybe they will be more aware of how serious a lumbar disc prolapse can be, and what backpain and nerve pain might mean long term if we don’t address it, which neither of us knew before. Luckily in runawaycerbera’s case it was not too late but for many people it is especially if they experience Cauda Equina Syndrome which is a serious form of nerve damage that can leave you with permanent parasthesia if you don’t get it treated straight away. Check out the NHS website for details if you need more info, it is a really helpful site.
I read everything runawaycerbera has said about the debilitating back pain and the fog it creates and it sounds just like me! I had the caudal injection into my epidural region of the lumbar spine in March, to stop sciatic nerve pain, which luckily for me worked, altough for only or two weeks and was very painful for days afterwards but at least it was not excruciating to go in, just a bit humilating with butt in the air (not even a friday ;-). I was told by neurosurgery team this injection is too random and often goes wrong and is rarely accurate enough to do good. Too late after it was done, although the osteo/gp who administered it advised it was 50/50 success. Funnily the numbness and pain I now have down my left leg is different to the pain I had in my right. The pain shifted once I started physio in August (yes it took that long to get a referral to physio) and started the intense exercises recommended by the spinal pathyway physiotherapist. I went from stooping badly and pain in the right leg, to standing straight with intense pain in my buttocks, thigh, hip, leg, foot. The prolapse is central so I suspect it has shifted in it’s prominence/increased it’s prolapse, as does the spinal pathway team. Or maybe another disc has prolapsed, that is quite common once one goes I have heard.
I so hope I don’t suffer as runawaycerbera has done, with the bladder problems and in agony for so long, but I have had issues with ‘other areas’ that has been ignored and I am not hopeful I will be spared any of the anguish she has experienced. I was told by many people in the last few months, that I should have gone to A&E at christmas and again in June, instead of accepting that any movement would make me cry and that was ok. The emergency GPs felt it was not that bad, but they didn’t physically see me. If/when it happens again (it is very likely I have been told by the spinal pathway team) R and I have agreed, no calling out of hours doctors for more diazepam and extra tramadol or codeine, I will go straight to A&E.
I just feel that as I am walking and not in the serious acute phase, the medical teams seem happy that there is no longstanding damage. I worry that they will wait untll it is too late before it is sorted. It is not healing itself. It is not getting better. I am just managing the pain better by avoiding living my life how I want, and by taking a lot of drugs. I agree with runawaycerbera that I am not sure how much of my tiredness is drug related and how much is that I am so ground down, yes a lot of it is the drugs, but much of it is not. Like she said, I hurt so often, I don’t think I realise how much anymore.
I am very scared that I am never going to be me again, that I am never ever going to see an end, and that even the brief periods of relative pain-free existance is just a short term until it goes again and this is how I am going to live my life, in fear of the most horrendous agony I have ever experiened returning. It is worse than my experiences of childbirth and I say that having given birth to my son with only entinox as relief and having had a ventouse delivery with my daughter. I simply cannot bear the prospect that my once active life has disappeared forever, that my children see this shell of who I really am, that this is their mother. This is not who I want them to see as their mother, it is not meant to be this way for them.
But runawaycerbera you have given me some encouragement that it won’t be forever, that one day I may find someone will listen and remove the fucking thing. I will, without a doubt being making a trip to A&E at some point in the future. I hope like you, it is not too late when that happens, and the nerves has not been permanently damaged.
ok, that was a lot of me there. an outpouring shall we say! phew. thanks !