Bad Back Pain Day.

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Yesterday was a Bad Back Pain Day and that means I didn’t write the post planned about how red wine can help back pain.

As R helped me into the shower while I yelped loudly as my back muscles spasmed, pretty much carried out of the shower I thought going to work was a good idea. I had deadlines to meet and my colleagues would be pissed at me if I didn’t go in.

I had to fire Summer Girl as my dressing assistant when she got distracted by a lego toy on the floor, while I was standing with one leg half in the trousers she was meant to be helping me into. R suggested that if I couldn’t get my trousers past my hips and down again, then going to the toilet would be interesting at work. But still I ploughed on through the crippling pain.

I hired 5 year old Winter Boy to pick up the hairdryer from the floordrobe, turn it on at the plug and help dry my hair standing on chair while my back muscle spasmed and my back locked up was causing me to yelp from time to time. Turning around was robotically done to avoid inducing further spasms. But, work would be fine once my medication kicked wouldn’t it?

After threatening to hide my car keys, R finally succumbed to my stubbornness, drove me to work (no way was I able to drive the car), on the condition I got my reports done then came straight home, and I slowly, slowly, pigeon stepped my way to my desk, breathing sharply every time I opened a door, or when the lift jolted.

By 1:15pm, after cancelling all my appointments, having coffee made by colleagues, being helped to the toilet by colleagues (they didn’t help me with my trousers and it took all my effort not to yell as I pulled my too tight trousers up again), my boss was walked with me out of the building as me legs lost their strength and my back pain was so immense I could barely walk. But not before giving me a stern me off for persevering in such pain and immobility.

By the time Ross picked me up and drove me home, I was in tears; my back pain and back lock was so severe I couldn’t lift my feet up a single stair to get to bed, screamed in agony as I tried to get onto the sofa and screamed in sheer pain when anyone touched me. R considered calling an ambulance as I Could Not Move.

Instead, I necked maximum doses of all the painkillers I had in my armoury, (avoiding red wine, shame) and lay in an awkward but still painful position on my side with legs bent at an angle, praying through tears that the pain would subside, before finally passing out through pain and medication. Goodness knows what would have happened if I needed the loo before my meds kicked in as I would have hit anyone trying to move me.

Today I can walk, slowly, as long as it’s not far. I can’t lift anything heavier than a coffee cup, and going to the toilet remains interesting and any movement is careful and considered. I am not in work, instead I am watching The Lego Movie for the millionth time with Winter Boy while R has taken Summer Girl to by some school things.

It might have been a stupid idea to go to work with acute back pain, but at least I got my reports done by their deadline.

If you find yourself having sudden unbearable lower back pain, it can be very frightening. You need to keep as still as you can, in the most comfortable position available. If you have already had this before, you should have an emergency medicine box (if not, get one now), with Diazepam and Ibruprofen or similar NSAID medication in (if you can take NSAIDS) as your minimum medication. And don’t forget trusted paracetamol.  Take these as soon as you can, and apply heat to your back. If you don’t have anything stronger/opiate based, call your GP or other primary care provider immediately who will provide stronger medication to cope with the pain (normally codeine or similar if you can take those). You will likely be woozy with the medication so you won’t be able to do driving, chores etc (not that you can with that much pain) so try to get someone to be around to help you.

Don’t be afraid to call your local Out of Hours care providers if your GP is not available, or even 999 if your pain is unmanageable at home with maximum painkillers doses that you can safely take at home, as unmanageable pain is a medical emergency in itself.

The chances are, the cause of your lower back pain is a muscle spasm and will subside in a day or two (hopefully to more bearable levels within a couple of hours).  If however, you have red flag symptoms, specifically, but not exclusive those of Cauda Equina Syndrome, you MUST call 999 immediately, as this is a medical emergency. If you are unsure about the symptoms, don’t take any chances and call 999. The hospital will do the necessary checks to rule it out/in.

Most of all, try not to panic, as that can tense your muscles even more and increase the pain. Easier said than done I know. 

“12 Ways to Cope with Chronic Pain and Depression”

I often assert, when the question of depression and chronic pain come up, that I am not depressed; that if my pain was to disappear tomorrow I would be happy and all would be good in the world again. Perhaps a year or two ago that might have been true (or perhaps not). But as time has gone on and the effects of chronic pain on my entire life, including my emotional wellbeing, has taken its toll, I am slowly considering that perhaps it’s no longer just chronic pain and the direct effects it has on my ability to live my life how I want that gets me down. Maybe, my psychological state has been actually altered as a result of pain and lack of movement, medication side effects, and huge drops in taking part in those things that have historically provided me with the chemicals and hormones that make us feel happy and content; that if my pain did go away tomorrow I may still need to work on my emotional health a bit longer.

Now, I am still not saying that I am depressed. That’s a hard thing to admit to. But, I will admit that my emotional health needs some TLC. Ploughing through pretending it’s all going to sort itself out someone is not an answer any more, and my emotional health has taken some battering. I do reach for ways to improve my mood and help me feel better about myself.  I will tentatively do things to try to help, then throw my toys out of the pram reminding myself this is all down to pain and if I sort that out, I won’t be depressed, so I need to work on getting better. 

I’ve just read a great blog from Arthritis Health, called “12 Ways to Cope with Chronic Pain and Depression”. I guess I like it because, whether I am, or am not depressed as a result of my chronic pain, whether I accept I am depressed or don’t accept it, it has helped to remind me that changing holistic aspects of my life for the better will only benefit me. It will benefit anyone else suffering from chronic pain who might, or might not be depressed as a result, or for other reasons. 

We need to take care of our emotional health, whether or not we suffer from chronic pain; more if we have chronic pain, as our psychological self has a continual pounding as well as our physical self. I am going to work a little more on addressing my mental health needs, so that if I am depressed, I can move out of that space. And if I am not depressed, it will till help me to build my feel-good vibes, which will in turn help me manage my chronic pain.

For those that don’t like hovering – here’s the link to the article:

http://www.arthritis-health.com/living-arthritis/managing-depression/12-ways-cope-chronic-pain-and-depression

It’s Been a While: Had a Laminectomy!

Wow. A long time. But, still many people reading since I have abandoned you. Sorry about that.

You see. I had big plans when I last posted. I was going to be an advocate for music festivals as a disabled person. I was going to out those who made it harder for disabled people to access music, and highlight those who helped and supported them. I was going to continue camping, endlessly, tirelessly refusing to give in to the pain and discomfort.

But, it didn’t happen. It was too ambitious. Because actually, as much as i loved it, my back pain and mobility deteriorated and I sort of stopped living. For a little while. I buried my head in the sand, again, about the longevity of what I know for sure now is degenerative disc disease and arthritis of the facet joints in my lumbar spine. And really, I am just not brave enough or strong enough or able to pretend my back pain is not there enough to be able to go to festivals as I would like no matter how fabulous the event organisers are. I attempted camping once this year, but due to a combination of shocking weather, mobility issues and air mattresses that keep deflating on me, it’s on the back burner. We might try once again. Hmm.

I think during my last rant or two I might have mentioned that I was waiting for an appointment to see a highly reputable Neurosurgeon at the National Hospital of Neurology and Neurosurgery. Well it did. I saw him, he was direct, honest, kind, and if I might say so, rather handsome to boot. He informed me that I have lumbar spinal stenosis due to the facet joints being little fuckers at TWO levels (it’s getting higher) – L4/L5 vertebra and L5/S1 vertebra. If you remember, my original problem was L5/S1 vertebra and was told I had a perfect spine if not for that injury. Well, that was bollocks! So, basically, along with a broad based disc bulge at L4/L5, and a thickened Ligamentum Flavem, which was helpfully pressing on the spinal cord, I had bone spurs growing into the channel where the sciatic nerve exits the spinal cord.

I had a laminectomy and decompression on the right side of L4/L5 and L5/S1 vertebra in January 2015 at NHNN, with the expectation of up to 50% overall pain relief, i.e. attempting to completely free the nerve and ease my sciatic pain, but not really being able to do much for the back pain without fusing my spine, which was given a 60/40 success rate so was dismissed for now. Initially the results were fabulous after the minor blip of a CSF leak; I could stand straighter, I could walk without a stumbling shuffling gait, I was able to walk without my lovely orange and black crutch for short walks on flat surfaces, and I felt I had, finally, turned a corner.

But no! Of course not! My pain levels went up, up up. My mood levels went down, down, down. I struggled with leg pain, back lock, constant muscle spasms from the base of my spine to my neck. I had trigger point injections which helped a lot (and four months later I am waiting for my 8 weeks review to see how these went) but wore off too quickly, I had acupuncture, which worked wonders for several days then back to epic spasms. Pain Clnic doctor and physiotherapist have both said I am impatient, have lots of muscle wastage, and to give it time, much, much more time, patience, effort. All of which I have been doing. I have slowed down as asked, but not stopped, and tried hard to be positive.

But it’s been 8 months since my laminectomy and decompression. 8 months of moving, walking (trying to get some distance but not happening), physio and i continue to struggle with standing for too long, walking, pretty much at all, and sitting for more than a few minutes. And now I am mostly back at the stuck bent over stage. I’ll take a photo of the  ‘old woman hunched over with a walking stick’ sign at Wembury Beach toilets to show you what I look like.

Degenerative Disc Disease, Do you have it? (and Other Ramblings)

As a consequence of sitting for too long at my work writing an urgent report before 1pm, then driving like the wind across town to sit for too long on small school chairs for Winter Boy’s First Ever Harvest Festival Play and Summer Girl’s First Ever Speaking Part in her Harvest Festival Play (they were both amazing and brought tears to my eyes, so proud), then driving like the wind across town again to swimming lessons, then again across town via collecting R at work, and finally back home, I am Really Fucking Sore.

My back is in spasm and my entire spine is locked from lumbar to cervical. I can’t bend well, can’t sit well, can’t stand well. So, I am writing this while waiting for the trusted muscle relaxing ‘Friend‘ to do its magic. I may do the written equivalent of slurring towards the end of my post.

I had some not so great news this week at the pain clinic. The pain that I have been experiencing in my back and sciatica down my legs, and which is getting worse, is, partly the re-prolapsed L5/S1 disc, which I already knew, but mostly coming from Vertebral End Plate oedema at the same level, where there is inflammation and damage, which I believe is Degenerative Disc Disease. And thus we have come around full circle since the beginning of my blog, where I had initially had explained that my condition was DDD, then ruled out.

I have read a bit about Degenerative Disc Disease, and end plate damage, and it’s not the most mood lifting read in the world. The pain clinic answered my questions about what the future will mean due to this end plate inflammation,  with as much of a positive spin as he could, smiley faced while telling me that “yes it will get worse”, “no there is nothing that will fix it, fusion won’t help” and “you may experience increase in pain” “but we can manage this can’t we Wine?!” “stay optimist Wine!” “you are a determined woman Wine, a fighter, keep that going and you’ll be fine!” “don’t feed the pain, don’t fuel it with too much thought” etc, etc.

If anyone has experiences of end-plate oedema and degenerative disc disease, do get in touch with your advice, and links to information, and how you cope with it.

I’ve also had a blood test to rule out a spine infection due to localised large swelling in my spine at L5/S1 level (right between my Venus Dimples), painful blood/flu feeling (which I have blogged a little about before a year or two ago now), increased feeling of unwellness during a flare-up. Don’t think much will come of it, as he took the bloods after the main flare up. Also I read on Dr Google that low-grade infections don’t show in normal blood tests. But we’ll see what happens.

I have been reading some interesting articles on the Spine Health website, get sent links via Twitter and Facebook, and so I thought I you might want to read the most recent one I have been reading called Chronic Pain on the Brain – as the title suggest, it looks at the potential impact of chronic pain on the physical structures of our brains.

It’s Been a While: I’ve Had a Micro-Discectomy and Other Things.

I have been silent. I have had writers’ block. I have had reduced pain. I buried my head in the sand and stopped wanting to talk about my bloody back pain; talk about a pain in the back. I have plodded, and managed with lower level pain. Not disappeared pain, but bearable ‘let’s pretend it’s ok’ pain. Stoic. Just waiting for a date for my L5/S1 Lumbar micro-discectomy.

I stopped taking Tramadol about a month ago. How about that? It’s been worrying me, using this drug, and I feel fine without it. Great in fact. It’s been R’s 40th birthday; we went out for wine tasting and I wore heels; we had a party/gathering and I wore Fly London Wedges. I looked fantastic that night with my new dress, new haircut (even if I say so myself, as did others), and red glowing sunburn; I drank alcohol as I had no opiates or nerve blockers in my system, and it was great as alcohol dulls pain; I got drunk; we went out for post partying breakfast and I struggled to bend down to pick something up from the floor. And that was the end of the ‘good phase’. I could not get out of the car coming back from breakfast and we holidayed in a yurt for the following five days, up a steep hill, with a LOT of painkillers and the lovely diazepam to keep me going. It was actually fab, but despite backpain (you got to just get on with these things right?).

On Tuesday, having returned from holiday to just one day’s work before going off sick again, the neurosurgeon’s secretary called me; “How would you like to have your surgery tomorrow morning?’

So, this is what happened

Tuesday 18th June in the morning, I was called by the secretary, a simple yes or no, she will call me back with details. In the afternoon I got the details of where I need to be and what time. A mad rush followed, sorting out new jimjams (didn’t bother), cleaning and drying my finest pants (I had to take em off, waste of effort) and supervising R cleaning the bedroom so it was lovely when I came home. We organised childcare etc and I spent a little bit of time trying to calm down a very worried little Summer Girl, ‘what if you sleep for too long mama? I don’t want you to go!’

On Wednesday 19th June at 6:20am I said goodbye to my tearful Summer Girl, my slightly nervous R, and a Winter Boy who wanted to wave at the mini cab taking me to the hospital – there was no point disturbing the children’s routine, and it was last minute so who could have them at that time in the morning? It wasn’t an emergency so R did school run as normal – by 6:45am I was stood in a queue of dozens of other people waiting for their ops. ‘Fucking Hell’ I thought, ‘I won’t be seen first that’s for sure.’

Wrong! At 7am I was booked in, 7:15am wristbands put on me, a million questions asked by a student nurse (including, ‘are you pregnant?’ about 10 times). At 7:25am I was seen by the Registrar who told me I would be having a bilateral micro-discectomy and I signed the consent forms. I changed into the very fetching gown and stockings provided, keeping my lovely clean M&S knickers on. At 7:45am I was seen by the anaesthetist who kindly let me know he will ensure I will be provided for drug wise when I wake up. Not reassuring, as that suggests I will be in a lot of pain! I missed seeing the Consultant as I was busy contemplating whether or not to keep my pants on as I got changed when he looked for me.

At 8:43am and having been told my neurosurgeon prefers his patients with their knickers off, I was answering the following important question in the anaesthetist’s room: What Makes a Perfect Manhattan?

Next thing I know, it was 12:30pm and I was fucking freezing lying on my side in the recovery room. Not for long, as I got warmed up by a lovely blanket thing that blew air all around me. (I need one for home, but apparently you can’t buy them).

AND NO PAIN IN MY LEGS!!!

Thursday at 3:30pm – I left the hospital, having been discharged as ready and desperate to get home, with one of my best friends in the world having brought me a proper take away coffee for the journey home.

I am still waiting for the pain to return. I have done too much today, and so am actually hurting a little, and in truth I do have a little pain in my legs, but it’s throbbing pain which I think may even be referred pain. There are no stabbing pains as I lay down or sit, so feelings that my leg will snap off, no pins and needles (a little fuzzing). There is some numbness in my toes and that might never go away, but. FUCKING YEY!

The Technical Bits

No fusion! I had a left sided decompression, instead of the anticipated bilateral decompression as the surgeon didn’t want to remove bone from both sides; he said this would leave my already unstable vertebra even more unstable and the risk of fusion would increase significantly. Apparently this means a slightly increased risk of right sided prolapse in the future and need for further surgery, but he felt that was a better risk than doing it now when right sided pain was minimal. I agree. Actually.

The incision is Tiny. Really tiny. Hardly even hurts.

I am moving! I am walking! I can’t sit for too long, or stand for too long. I have a granny seat on the loo. I am trying really hard not to do too much, but I feel…NORMAL! Apart from nagging pain, which is healing pain so it’s good pain.

A success! I do have to wait and see, as it’s still early days, but I am pleased with my microdiscectomy surgery!

The misaligned L5/S1 vertebra is a backwards misalignment and could have been caused by injury to the vertebrae.  The Clever Mumsnetter, DillyTante, uncovered the likely cause of my back trouble, especially as this is NOT degenerative in my case, and all information since continues to point toward this being right.

Taking Control Back: The Expert Patients Programme – First Day

You might, or might not have read my post about my interest in the Expert Patients Programme. I won’t go into lots of detail about the Programme here as it’s well documented in my other post.

After a frought week due to having a sick  husband, children who needed entertaining, work and preparing for Mother In Law to visit – which of course entails making the house look beautifully tidy and pretending we live that way all the time instead of the shitpit we actually live in – I almost, almost, cancelled. “I don’t have the time” I said. “I have too much to do” I made excuses. They were all true. But also, my back pain has been under control for a few weeks, and so, well it’s not a disability any more is it? I can walk relatively normally – apart from apparently I still limp a little, have a slightly odd gait, but can’t notice myself – and so I am taking up a valuable space that other’s can use. But, none of that’s true is it? I had to remind myself that if I didn’t do this, I would relapse at some point and be devastated that I have not moved myself forward. I HAVE to recognise that a month at most without pain so bad it makes me cry does not constitute a cure.

And so I went. At 9:30am on the dot. Without my paperwork as I lost it and having confirmed so late in the day I was not sure if I was expected. I was not expected. There was no course at 9:30am. Or 10am. It was at 2pm! I just laughed it off as typical of my chaotic and unorganized week.

I went to Session One of the Expert Patients Programme with probably far less trepidation than most of the other participants as I am used to being on the other side of the desks. I could feel the fear in the room from some when there was the prospect of talking, and I could sense the keenness of others to have people listen to their conditions, to hear what they have been experiencing, and later found that some of those people hardly see anyone socially due to their conditions making them housebound.

The Expert Patients Programme is, I have learned, an accredited programme which is run across the world, and was developed as the Chronic Disease Self Management Programme at Stanford University, California, who now hold the licence which allow it to be run, and is facilitated the same way throughout the country. I like that, as it gives focus and structure to the group, where it can be possible to run away with talking about our ailments for 2.5 hours, it hones us in on the purpose of the sessions, to learn the skills to be expert managers in our own health. Now, some people prefer to have free-flowing groups, but I guess that is where my own experiences of facilitation come in. Where it originates and how it developed interests me so sorry if you have glazed over.

Any fears or anxieties were immediately quashed at the sight of the full Tupperware container full of Bourbon Biscuits. Now I am a great fan of Posh Biscuits, but there is nothing better than bourbons. I felt at ease.

I won’t bore you with the full details of the first session, and of course we all entered into agreements of confidentiality so I shan’t divulge details of the participants, but, my over-riding feeling initially was that I was somehow a fraud, that my condition did not warrant me being there. There were participants there who have to suffer with multiple conditions at once, some as a consequence of other conditions, some with  multiple un-connected ailments and my life felt like a breeze – I have periods of wellness, I can still socialise (although I do that less and less), I am managing to hang on to my job.  But, I had to once again remind myself that this was a Good Day. And on a Bad Day I would possibly not even be there. Re-enforcing that was the fact that not one person saw my condition as minor and lots of what I shared with the group about the challenges I face as a result of my condition were equally shared with other group members and I realised that it was not about who had the most serious condition to contend with, there was no competition in the room – we were all there as we all had a condition or more than one that affected our lives to the point of disability and we were all there to find ways to manage. We were all in this together and the group gelled quickly as this became clear.

We all shared some of our personal challenges as a result of our condition, as much as we felt comfortable doing so, and it became clear that, despite the individual challenges that were unique to us alone, there were common ones that affected ALL of us in the room – I expected pain to be a shared challenge, and it was, and mobility for a large group of people, again it was, and not being able to do the things we used to be able to do, but I was quite surprised that fatigue came up time and time again. Every Single Person in the room struggled with fatigue as a result of the differing reasons for bringing us into that room together and it helped me a lot to realise that the continuous and horrendous and often debilitating tiredness I experience now is not unique to me, does not mean something more sinister is wrong, but goes hand in hand with chronic illness. And, as a result some of the course is designated to managing fatigue as it is recognised as a symptom of chronic illness.

The other challenge that we all faced, despite our wide ranging disabilities that have brought us to the same place, was that we are all struggling to come to terms with our conditions, with accepting that our lives have changed forever and that we won’t wake up tomorrow with a magic cure – it won’t go back to how it was before and no-one in the room had fully grasped that yet but we have already all made big life-altering changes and today was the start of another big change – acceptance.

And all 12 of us in the room had taken a huge step in acceptance by coming to this first session.  Even if I don’t find the strategies for coping new to me, just consolidating what I know, I have already come a little bit closer to accepting I have a disability by attending this first session.

Although, I am feeling so much better, it might have all been a misdiagnosis and I am on the mend right…?

Taking Control Back: The Expert Patients Programme

This week I have been pointed in the direction of the Expert Patients Programme which is a free self-management course run by volunteers who all have a chronic condition of some kind, for patients who have a chronic condition of any kind. It is a 6 week course of 2.5 hours per week in a group setting and provides structured support and real strategies for coping with the impact of chronic conditions, increasing confidence, learning coping strategies, dealing with relationships as well as meeting other people with chronic conditions.

The first person to tell me about the Expert Patients Programme was a friend via Facebook as I moaned about the length of wait for my various hospital appointments. Because I have moaned to everyone about it. A friend who has a chronic condition and said despite not completing the whole course, he found the sessions he attended useful in managing how he coped with coming to terms with his condition.

Almost immediately after, and completely separately, a very close friend of mine emailed me to say she had actually spoken to the manager of the local Expert Patients Programme which is run from the local voluntary guild (of which my friend is the ACO), about my condition and also that I am a trained group facilitator myself. The coordinator has lent me the workbook so I could take a look at the course structure before deciding whether to do it or not and it looks well structured, thorough, and informative.

One of the things that appeals to me about the course is that it is run by fully trained volunteers with their own chronic conditions, and thus able to support from a personal understanding as well as being trained to facilitate learning in a group setting. I also like that it is in a group setting. There is going to be a wealth of knowledge, experience, information and support from this type of group, with people who know, who are there, who understand what it is like to never take a break from pain and who want to take control of their lives once again. I am already, ironically, a group facilitator in a cognitive psychology based area, which in essence is what self-management is but I work with people who are largely not ready to take control of their lives, and so know how important it is to be ready to do courses like this for them to succeed and the idea of being able to use my own experiences to share with others and help others has piqued my interest.

I am quite a thorough person when finding out about informative aspects of my condition – ways of coping, medical information about what is going on in my back, practical techniques, and medicines, but, what I am not so great at right now is emotionally coming to terms with the impact of chronic back pain so the support that a group like this can bring, and that I can bring to others appeals to me.

It’s funny because when I was first struggling with the pain and devastating impact of this condition, namely being told by an osteopath that I should not kayak again, he suggested cognitive therapy. But, he talked it up (or down) as being that much of my pain was psychological and that I needed to get to grips with it emotionally. My instant reaction was ‘fuck you I am not struggling emotionally’ and I walked about, did not return to see him again. To be fair, he was a tosser of the first order and did nothing practical after his initial correct diagnosis other than delay my treatment and make me feel like I should Just Get On with It.

I am not sure if it is me that has changed my own perspective in the last year, or that this course has been presented in a much better way, but, I like the idea of seeing myself as an Expert of my own condition, of taking control back, and so I am not seeing this like some counselling session to ‘come to terms’ with my condition, but one where I become myself again. Unlike those I work with, I am now ready to take control of my own destiny.

I have also read about being a volunteer myself, and yes I know, got to do the course first and learn to be that Expert myself before teaching others, but, I already want to be a volunteer. My friend clearly knows me well as she has already told the manager to expect me to end up as a volunteer!

So, I am going to find out when and where the next Expert Patients Programme is, sign myself up for it and I will post my progress on the course and any useful tips I learn on the way.

If you are interested in finding out about an Expert Patients Programme in your local area, you can either contact them via telephone or email, details on their website, or you can read more about it on the NHS website detailing specialist services available. 

It’s worth mentioning that there is also a specific Back Pain Management course run by the NHS, which I may be offered through the NHS hospital lead Pain Clinic, which will teaches specific skills relating to my back condition, but to use this as a tool alongside other treatment, and when I have more information about that I will post details. In addition to these courses there are other courses available for specific chronic conditions such as diabetes and arthritis.