Epiphany #2: the fragile self

scars I struggled to find an appropriate picture to accompany this post. I find this curious considering how much stuff is floating around out there, and yet I have spotted a screaming black hole in the relentless services of Google images. The intention of this post is to discuss the link between physical pain and mental health issues, yet all the internet seems able to provide visually are some cringeworthy memes which appear to place physical and psychological health issues in some strange kind of competition with one another, rather than accept that, in many cases, they are inextricably connected. More disturbing still is the fact that this attitude is too often reiterated in real life, with medical professionals consistently failing to assess the impact of mental health issues on patients with chronic physical conditions and vice versa.

Life imitates art (or poor memes) so it seems, and despite my own physical and mental health issues which began long ago during my teenaged years, I only considered that there could be a possible connection between them over the past few years, several decades after both problems originated. I perceived the physical problems which were developing within my leg to be completely separate from the psychological problems I was experiencing, which I made great efforts to hide or deny at that time. Also, of course, physical problems were more visible and readily prioritised in those days, there was an unspoken fear of mental health services then and I really didn’t want anyone to know that I not only had a crappy leg but that my mind was a bit wobbly too.

A couple of weeks ago, I experienced another epiphany-of-sorts, which left me without a shred of doubt that my physical and psychological well-being are inextricably connected. Not just a bit, but totally and completely. The experience also served as a timely reminder of my own fragility, which I must learn to accept and modify my behaviour accordingly, and perhaps even swallow the bitter pill of accepting that I will never be as resilient as I think I am or would like to be.

As discussed in my previous post, the outcome of my most recent hip replacement surgery has been astonishingly good – even my consultant was absolutely gobsmacked at the progress I had made. He admitted that he had serious doubts about performing a second hip replacement so soon after the previous one, and fully anticipated that my recovery period would be prolonged and difficult, but reassured me that the result was self evident – that despite both his and my own doubts about my overall health, I was in fact extremely physically healthy and strong to have come through this with such a positive result so soon. By this time, I had managed to ditch the trippy overwhelming opioids after 4 weeks so was managing the pain using only anti-inflammatories, ice packs and my trusty hot water bottle. But the progress which I felt was most significant (and surprising) was the fact that psychologically I felt ‘well’, possibly for the first time in a several years: I didn’t feel overwhelmed with depression and exhaustion on a daily basis, and I felt increasingly self-confident in my ability to organise myself and do things independently, not just physically but psychologically too. In fact, I felt more confident and empowered than I had done for a long time, which was too long ago to even remember when all that shit even started. It felt good, and I felt good. For a couple of weeks I had so much energy, loads of it, so much that I didn’t know what to do with it; I got up early and was buzzing about doing cleaning, washing, sorting out cupboards, gardening, organising myself by trying to restore my living space into something which was manageable and positive rather than the shithole it had deteriorated into alongside my physical and mental deterioration, had several major clear-outs and trips to the tip, fixed broken things, put shelves up, did longer dog walks (without sticks – hurrah!) both alone and with company etc, in fact I did all the things I usually do when I’m, what I call, ‘re-inventing’ myself. I realised that I was subconsciously preparing myself for a new life, a different kind of existence which was outside the house and back in the real world again.

The epiphany occurred on one of these days. It was sunny, I was up early, and I needed to walk the dog. My newfound mobility had also instilled in me an obsessive desire to walk – for as long as I could manage, and at least daily; it was like an addiction, I guess because now it was something that I actually could do again. My partner had gone away for a few days (hellfire, he certainly deserved a proper break away from me by this time, for the sake of his own sanity if nothing else) so I was home alone, and buzzing. I live out in the wilds, so walking around here isn’t like walk in a municipal park. We’d done a really lovely walk a few days earlier, one of my favourites, but one which I hadn’t been able to do for a long time due to rubbish joints and mobility problems. It’s a really lovely walk up a steep valley where the river runs down, along the bottom and forms loads of pools which are perfect for paddling and swimming. With school holidays only a few days away, I decided to do it that day, I figured it was my last chance while it was still quiet up there. So off I went. I never take my phone when I walk the dog, but for some reason that morning I did consider it, before quickly deciding not to bother – all the usual excuses: it’s just something else to carry, there’s probably no signal up there anyway, what could possibly go wrong, and even if it did, who would I call?! Anyway, off I went with my lovely happy dog, and all went swingingly at first, but then suddenly, on the way back down the valley, the path gave way and I fell.

The fall itself was quite dramatic by my standards, and was certainly in a league of its own. I’ve never had a fall like it before, usually I just trip or stumble, but this was something else entirely. Even the dog looked mortified. The path was narrow and I hadn’t realised that it had eroded below where I was standing, so it just gave way. I fell down about 15 feet, walloping my back on a boulder on the way down, and ended up underwater in the river. Well done me! if you’re going to fall, do it with style!! I managed to haul myself out, shuffle back to the car, and called in to see a GP on the way home, who said I’d probably broken a rib.

Once I got home, I had a total meltdown. My head flooded with ‘what ifs…’ What if you’d banged your head & concussed yourself? What if you hadn’t been able to get out of the water? What if you’d broken something and/or couldn’t walk? etc etc But the real mother of a ‘what if…?’ was “What the f*ck would you have done if you’d dislocated that new hip, or even the other one?!? Whatever were you thinking?!??” Admittedly, at the time, it was the very first thing I thought of – if I can stand up, if I can walk, then presumably the hips are still in place. I can only assume that the hips escaped damage because I landed in water – although finding yourself underwater after a fall like that isn’t ideal, I am absolutely certain that if I’d landed on rock at least one hip would’ve dislocated, so I should be grateful that the water saved me from that particular scenario. Over the next few days, the reality of the situation started to sink in, alongside a few more ‘what ifs…’ and I began to realise that although it didn’t feel like it, I had actually been really lucky to have got off so lightly, physically at any rate.

Psychologically, I haven’t been so lucky. I spent a few days feeling anxious (which is unusual for me, I don’t usually do ‘anxiety’) but predictably my mood plummeted and I plunged straight back into a major depressive episode which, two weeks later, is still with me. I have lost my confidence, my energy, and the hard-won trust in my body and my belief in its ability to function properly, I am back in the Pain Zone yet again, propped up with endless painkillers to ease the rib and muscular pain which I have stupidly brought upon myself, and my head is a mess because I’m struggling with more trauma. I have even wondered how much trauma can one body sustain within such a short period of time without giving up entirely?

During my consultant appointment, I remember him saying “It’s a totally different existence, isn’t it.” and he’s right – a life with constant pain really isn’t worth much at all, in my humble opinion, and I feel so angry with myself for putting myself back in there, and so soon after such a brief period of respite. Right now, because I’m in pain again (although for completely different reasons, obviously) I feel like I’ve made no progress, or at the very least, one step forward and one step back. I know that logically that’s nonsense, I know that once the rib is repaired and the muscular pain dissipates, my body should feel like it did before I fell, and I’m hoping that I’ll get that blast of energy and a more positive optimistic outlook once again. But it’s so difficult to convince myself of that, especially now I know that it can disappear again so quickly and so completely. If nothing else, this experience has served as a brutal reminder of how fragile I am and how my physical and psychological issues are so intricately and inextricably connected. It feels bitter and harsh. So much work post-surgery, physically and psychologically to reach a better and more manageable space, yet it totally disappeared again in an instant, probably before I even hit the water.

I’ve got nothing and nobody to blame for this, just myself. It was a bad decision combined with extremely bad luck, but to happen at this particular point in time is infuriating. I fell because I made the wrong decision, I stood on the wrong bit of ground, and actually that could have happened to anyone. I didn’t fall because I was alone, I fell because I wasn’t paying enough attention – and even if someone had been with me, they couldn’t have prevented this. What is also clear is that my fall was absolutely not related to anything to do with arthritis, my leg giving way or the joint failing – the fact that the new joint survived this fiasco in tact speaks volumes. But it has to be said that it’s possible that I also fell because I was too excited, dazzled even, by my new levels of mobility and all this energy that was buzzing about inside my head. I miss it and would like it back, but I think that might take some time.

I have to learn to be more realistic about my expectations of myself, and how any physical progress is inextricably connected to my psychological state. Before I fell, I’d almost convinced myself that solving the pain and mobility problems was also the answer to my issues with depression and lack of energy – after all, as the post-surgery pain dissipated my mental health improved, so if I could get rid of the pain permanently I’d also rid myself of any lurking, lingering and persistent mental health problems surely? However, this little experience has made it abundantly clear that it is not that simple, and never will be. The fact that a relatively minor physical set-back has sent my depression levels plummeting is sufficient evidence to realise that there is no simple solution to all this. There is a connection, certainly, but the whats, whys, wherefores and hows remain a mystery to me. Right now, my priority is to give myself some healing time, and to stop the self-hate blame game from escalating even more. I need to put the accursed hair shirt back on for a few more weeks, take the goddamned pills again, and do very sensible dog walks in really safe places.

Casting Aside The Hair Shirt…

hiarshirt2 Historically, the wearing of a hair shirt was a form of public and private self-punishment, an itchy and uncomfortable garment for the purposes of cleansing the soul of its many sins and instilling humility into the wearer. In the weeks following surgery, there is invariably a period of time which I refer to as The Wearing of The Hair Shirt which will be discussed below, alongside concerns relating to whether this post-surgery period (when, let’s face it, you feel really seriously shit and are already dealing with mobility issues, pain and trauma) is a good time to be putting yourself through the misery of abiding by the strict rules of hair shirt wearing.

Post-surgery, there is a time of a few weeks when ‘precautions’ are of paramount importance to ensure you don’t trash the highly expensive and labour intensive joint replacement that you have just been gifted by doing silly or unreasonable things. Depending on the type of replacement you have will obviously dictate what those precautions are – for example, if you have had a hip replacement, you should not bend more than 90 degrees for the first three months (which, incidentally, makes it impossible for you to get dressed without help, put on your own shoes, feed the dog, or pick anything up off the floor during this time). Other elements of Hair Shirt Syndrome are the mandatory wearing of anti-embolism socks for a minimum of six weeks, taking lots of painkillers and various other meds, endless physio, not being allowed to drive, and (my pet hate) sleeping on your back for eight long weeks. You are massively dependent on the support and help of others, right down to the impossible daily task of changing your embolism socks. And in absolutely no circumstances should you risk falling or causing any damage to your shiny new prosthesis – apparently, there is a 20% chance of dislocation in the first 2 years following hip replacement surgery, the remedy for which is (yes, you guessed it) more surgery.

Taken as an isolated period of time, six to eight weeks of complying with the above and behaving yourself really isn’t that long a wait before you can gradually achieve a more independent type of existence, and these precautions are there for very sensible reasons – disobey them at your peril! But I think what many medical professionals tend to forget is that for some patients the date the surgery is undertaken is by no means the beginning of a dependent lifestyle; my own experience of being increasingly dependent on someone else for help with really basic tasks had been going on for a couple of years before my latest surgical procedure took place. The Hair Shirt Wearing episode was simply the final couple of months of being increasingly dependent on another person, an extension tagged onto an already prolonged period of dependency so, unsurprisingly, I was extremely impatient for the day when I could cast the accursed hair shirt aside and do more stuff for myself. Although I totally understand why all this is necessary for my own well-being, the fact remains that by the time this ‘precautionary period’ was over I was extremely agitated, simply wanting a more normal and far less restrained existence.

Needless to say, I’m not one of those terribly obedient (if a bit obsessed) people who follow this advice to the letter – trying it on and pushing boundaries is a strong personal forte of mine, as is impatience – but I did my best within the constraints I was under and what my personality would allow. As always, the first couple of weeks were a bit of a novelty and I felt so dreadful that I didn’t have the strength or will to argue, but a month later the frustration of it all set in as did the physio rebellion. As always, the home physio exercises were excruciatingly painful and reduced me to tears every single time, so that was ditched almost immediately. Medical professionals will reiterate again and again the massive importance of doing these exercises several times a day, and continually stress that the best flexibility and final outcome can only be achieved if you grit your teeth and do it – apparently full flexibility and maximum mobility are not achievable by any other means. I’ve always found physio to be a real psychological battleground – I do try, but the pain is too much, and any depression or trauma that I’m trying to deal with escalates way out of control, and I figure that my priority is actually getting my messy head under control and worrying about my body later.

I had my follow-up appointment with my surgeon a couple of weeks ago, and it was a real eye-opener for both of us. Both were amazed at the level of mobility and flexibility in the joint – even more so for the total absence of physio! – and for the first time in several years, my body felt like what I can only describe as ‘normal’. It finally felt like everything was in the right place, everything was lined up, nothing was jabbing into anything else or preventing me from moving, and there was significant strength and weight-bearing capabilities within the operated hip and leg. I suspect that he was as amazed as I was – have we got there at last, and have I now finally got a body that works as it should? He was curious, as was I, about why this procedure had been so much more successful than last year – the other hip but the same hospital, the same surgeon, the same procedure, and exactly the same joint replacement size and type. Why was there hardly any swelling, minimal bruising, and the scar healing at such a ridiculous speed? What was different to bring about these changes? Or was it simply that my body was finally aligned correctly, and responding in a suitably grateful manner?

Actually, I had to confess that I broke more rules than usual this time. Following surgery, you are expected to mobilise asap and to keep your new joint mobile by doing your home physio exercises as often as possible, several times a day; I didn’t do much last year, but did even less this time round. Last year I went for very short and painful dog walks from the day after being discharged from hospital, noting that the shortest distance took a terribly long time but reassured myself I was ‘keeping mobile’ so doing the right thing; this year, I didn’t leave the house for ten days, and then it was only because I needed to have my wound checked, but kept myself mobile by shuffling around the house. Last time, it was several months before I was able to do a decent length dog walk without sticks for support; this year, I was walking a couple of miles without sticks around six weeks after surgery. Last year, I had little faith in the success of the surgery (which actually proved to be the correct conclusion to draw), whereas this time everything feels better, more flexible, stronger and it gave me a confidence in my body and its abilities which I haven’t experienced for a very long time.

Could it be that my rebellious approach to the aftermath of surgery was beneficial to me and my recovery? That ignoring advice and doing my own thing regardless had a positive effect, and that these so-called ‘precautions’ are simply there to keep you firmly inside your hair shirt for as long as possible? I suspect not. I do not think that ignoring medical advice after major surgery is a clever thing to do, but in many ways I just can’t help myself, my frustrations and my impatience. I think that this was the surgical procedure needed to rectify my various alignment problems, and as such, my body was actually in with a fighting chance of experiencing a less prolonged recovery and a better final outcome. And although I hate to admit it, perhaps it would have been even better if I’d taken the time and care to do my damned physio exercises!

“Why me?!” Chapter 8: Shaken, not stirred…

Early in 2018, I learned that the osteoarthritis which had previously taken up residence within my left oafigure knee joint, had spread into both hips and my lower spine. It was sufficiently severe to require an immediate total hip replacement in my left hip. I was extremely shaken by this unwelcome news, and was still struggling to understand how this had happened, and perhaps just as importantly, how this had happened without my being aware of it even by the time when the surgery went ahead. A year on, and I am still rattled by this and have continued to worry and wonder about what could possibly have created such a situation? After all, I’ve spent many years struggling with pain, waited a long time for a knee replacement which offered the prospect of normal levels of mobility and an end to the pain, and yet here I am, after several decades, feeling like I’ve not only made very little progress, but am actually further away than ever in achieving a relatively mobile and pain-free existence. I suppose I’m a ‘logical’ kind of person, one who requires cogent reasons and hard facts to make sense of things, and I have never been able to accept “ah well, that’s just how it is” as any sort of explanation for anything. I decided to write this blog for a couple of reasons. Firstly, to get all this stuff out of me and written down, so I could take a closer look at what had happened and try to figure out why – if I can find the source of the problem, maybe I can find a solution or at least manage the situation better. I really don’t want any more nasty surprises like last year, and by gathering all the information together does it actually make it easier for me to make sense of it all? Secondly, I’m very aware that I have a huge amount of anger about having developed OA, most of which is suppressed, but some escapes into the real world every now and then; I hoped that by blogging I would manage to remove some of this anger, but so far I have found that in writing everything down alongside doing online research, I have actually created a complex jigsaw of events and situations which, at times, actually makes my anger worse.

I had hoped that by now, several months since I started writing this blog, that I would actually have reached a kind of health plateau, or at least a situation where things stabilised a bit, but it seems that that isn’t going to happen any time soon. I would also have expected that now, at the age of 52 and two joint replacements later, that I would see a significant improvement in the quality of my life, that I would have been able to achieve some kind of semblance to a normal life, ‘normal’ meaning that I would have a reasonable level of mobility and independence, however this hasn’t happened and I have begun to wonder if it ever will. I do realise and accept that without the surgery, my situation would be a whole lot worse, but I can’t help wonder why the surgical outcomes aren’t better? It would be blatantly untrue to say that it isn’t worth bothering with the surgery, it IS worth doing, but again perhaps my expectations of it are too high? Perhaps what I’m expecting is something which is not yet achievable, medically speaking?

Something else I’d hoped for by now, was to have reached ‘the present’ in my endless tales of arthritic woe and misery. I had planned on writing about the aftermath of my first hip replacement, which is now almost a year old, and I gather it takes around 2 years for them to heal fully. Sadly, due to various other health issues, I haven’t experienced the slow-but-gradual recovery I’d hoped for, and have been plagued by still more mobility problems and pain issues for the past few months, so haven’t found the time to do that. Also, following several visits to various consultants and specialists over the past few months, we have concluded that it is necessary to now replace my other hip.

So, welcome to ‘my Present’. The pain I have experienced over the past few months has been the worst, most widespread, severe and most enduring. I always find it ironic that whatever the ‘present pain’ is, it always feels as if it is also ‘the worst ever’, however, in this case I would have to confess that it is. For the past few months, I have experienced constant pain – seriously, it is CONSTANT, it NEVER stops, it is hugely debilitating and it is exhausting. There is nothing I can do to escape from it however I sit, stand, lie, elevate various limbs etc, it’s always there; it moves around a bit, but is constantly somewhere in my hips, spine, legs, ankles, anywhere & everywhere below the waist, in fact. What I also find interesting is that although the pain and problems with this hip do have some similarities to the other one, there are more differences and it’s quite a different beast although I don’t know why this should be the case – curious stuff indeed. I can only assume that the pain is constant because the joint is vitally weight-bearing, so however I move or whatever I do, I can never fully remove all the weight from it – after all, that’s its function, its raison d’etre.

So, I’ve reverted to my “going backwards in an attempt to go forwards” mode yet again. The surgery is scheduled for next week; it’ll hurt, I’ll be miserable, I’ll be swearing, I’ll cry a lot, I’ll be cursing the physios, I’ll probably get hysterical a few times, I’ll lose the plot with the meds, I’m bound to have at least one meltdown, and I’ll have yet another big bugger of a scar for my collection. Yeah, feeling pathetically sorry for myself already, so bring it on. Meh…

“Why me?!” Chapter 7: Mistakes, misdiagnoses and medicinal mutiny

Around 5 years ago, I had what I can only describe as another health crisis. tablets The previous one, a few years earlier, had been a ticking time-bomb for many years so was entirely expected; eventually, my life ground to a complete halt, and I found myself unable to walk, drive or work, so surgery was duly performed. This more recent crisis was different. Firstly, it was unexpected. After all, I’d finally got the much-anticipated new knee joint, and although it wasn’t as amazing as I’d hoped, it worked far better than my creaky bones had done before. My GP had gently advised that I would most likely always have some issues within that knee or leg, but to keep taking the tablets was all that could be done. I took this as reassurance that the worst was now over, and that my then-existing levels of mobility (which were OK and enabled me to have some semblance to a normal life) was what I could reasonably expect until the replacement wore out in 10-15 years’ time. Apart from Bastard Knee / Stupid Leg and depressive episodes (most often related to pain management issues) my health was very good, I seldom even caught a cold, and only rarely visited my GP for any other health problems. Secondly, this crisis episode was more subtle, gradual, sneaky even. Gradually, over a period of a months, all manner of strange ailments slowly appeared but didn’t disappear with time, as I’d hoped they would. I started experiencing widespread aches and pains all over my body, suddenly both legs seemed to be unstable, weak and achy, and my arms were especially painful, with shooting pains going their full length right into my fingertips throughout the day and night. My limp became more pronounced, although I was no longer sure which leg I was actually limping on, my arms hung limp and heavy by my sides because it really hurt just to raise them, I dragged my body around like a leaden weight, my depression level plummeted back into ‘severe’, and I felt completely exhausted most of the time.

I went to see my GP, and promptly burst into tears as I did a really rubbish job of trying to explain all this bizarre pain to her and not appear overly hysterical. She had no ideas, but started with a bog-standard blood test, which would help to eliminate potential areas of concern, eg. thyroid issues. The test results were encouraging, nothing alarming to report except that I was massively deficient in Vitamin D which, she explained, can cause pain and tiredness. So, I was blasted with Vitamin D for the next few months and finally my levels became within the range of ‘normal’. But, the exhaustion and pains continued, as did my depression. She decided to refer me to The Pain Clinic, to check for problems such as M.E., despite me arguing that how could this be considering that I hardly ever got ill? The Pain Clinic concluded that I was ‘chronically fatigued’ (which didn’t necessarily mean I had CFS) and that I could also have Fibromyalgia, but they weren’t sure and couldn’t do any further diagnoses until my depression was under control. I was sent back to my GP who, once again, suggested anti-depressant medication which I, once again, declined. She also asked about my opioid analgesic intake, and when I told her that I only took them once a day (from a possible four daily doses) I was told to increase the dose to the fullest if necessary, in an attempt to get the pain under control. So off I limped, feeling far more depressed than when I’d first sought help some months earlier, worrying I’d become a hypochondriac, doubting my own ability to understand what was going on with my wretched body this time, and concerned that I’d been labelled with some strange illness that was both invisible and impossible to diagnose with any certainty. I wasn’t looking for another label, the last thing I wanted to hear was that possibly something else was wrong with me (decades of OA is more than enough to deal with), and if I must have a new label I want hard empirical evidence to back it up.

So I kept taking the tablets, and despite gradually increasing the dose to the maximum, the pain continued and its intensity increased from soreness and aches into stabbing pains. I also had more mobility problems and joint stiffness, especially in my legs, and my left foot had begun to turn outwards. I did drag myself back to the GP a couple more times over the coming months, but the response was the same: Keep taking the tablets, and some anti-depressants would help too. After about a year, I gave up on the medical profession yet again. If this was Fibromyalgia, it was awful and felt I should get treatment – but they wouldn’t continue their investigations until my depression was under control; I couldn’t access any kind of talking therapy and I didn’t want anti-depressant medication, but that was all that was on offer. I began taking more time off work due to stress, depression, mobility issues and generally not being able to cope with the demands of my rather lowly job; I was exhausted and already tired of fighting against something which I could neither see nor make any sense of.

1074471_opioid-addiction-concept-al-17 By now, my health and mobility had been slowly but surely deteriorating for around 2 years and with no sign of any solution from anyone anywhere. However, one cold dark January morning this all changed – not because of some medical genius intervention, but because I somehow managed to accidentally overdose on my opioids that morning whilst getting ready for work. I’ve never been a ‘morning person’ and am damned useless until around lunchtime anyway, but I got extra confused that morning about how many and which pills I’d taken; the pain was horrific so I must’ve concluded that I hadn’t taken the opioids yet so took more, and ended up taking double my normal dose. I realised as soon as I got to work, and ended up going home again to sleep it off, no harm done. But, this incident acted as a real wake-up call for me – it was partly the realisation that I was so bombed out all the time on opioids that I had little idea of what I was doing or memory of what I had recently (even within the past hour) actually done, and partly that I was experiencing horrific pain which was actually getting worse despite a massive increase in dosage compared to previously, and the pain clearly wasn’t going anywhere. So, I did what I always do at such times, I had a massive tantrum and decided I wasn’t going to keep taking the damned tablets, I was going to stop, there and then. And I did, just like that – which was a huge surprise to me because, having been taking opioids for around two decades, I did suspect that I was probably addicted to them by now and would find it difficult, if not impossible, to give them up. The other interesting thing which happened, which took me completely by surprise, were my expectations of myself, my mobility and my pain having made this somewhat desperate decision. Here, I will make a brief diversion – please bear with me…

Over the years of trying to manage my OA, I have become increasingly interested in the psychology of recuperation, healing and pain management, and it’s fascinating stuff. Now I have reached an age when (at last!) my friends are starting to complain about having various aches and pains, and recommendations for complementary or herbal ‘remedies’ are flooding in. I do listen and have even tried a few, but unfortunately for me nothing seems to work, which they have suggested is because I don’t believe it will, and therefore it doesn’t. I have put it down to the fact that I have a long-term, serious degenerative condition in comparison of the relatively minor aches and niggles which they are now experiencing. In fact, my very arrogant attitude is “Well, their pain is minor compared to mine, I have proper pain, that’s why this stuff works for them and not for me. They don’t know what real pain is!” But is this really what’s going on here?

Recently, I watched a BBC TV programme called ‘The Placebo Experiment”, where a British GP was investigating the potential of placebo medication. The volunteers for the experiment were all adults who were experiencing chronic back pain, some unexplained, others had a variety of diagnoses, including herniated discs and even cancer. They were told that they were participating in a trial for a new analgesic drug, and that half of the group would be given this drug whilst the rest of the group would be given the placebo. They were not told which group they would be in. The actual ‘drug’ was nothing more than ground rice, which ALL the participants were given, and the results were astounding – 46% reported a significant reduction in their levels of pain, some reported that the pain had gone completely, and some had even given up their previous medications in favour of the ground rice placebo (including a wheelchair-bound man who had been taking large doses of morphine for many years). This new ‘drug’ was carefully designed and packaged to look like a real prescription drug, to convince the participants that it was authentic, and this seemed convincing. Alongside the ‘drug’ trial, was a parallel trial relating to the amount of time allocated to GP appointments, where some participants got the standard 9 minutes, whereas others had the luxury of a 30 minute consultation – predictably, the participants with the longer consultation times invariably reported improved physical and mental health.

This placebo tale is fascinating for many reasons, most obviously for highlighting the power of the mind to heal should the belief be strong enough, and the ability to acknowledge and accept pain, or even the potential to deny its existence. For many years, I have questioned myself about whether I imagine at least some of my pain – like I said in my previous post, what do you do when something which has been part of you for so long is finally taken away? Can you even begin to imagine what your life could be like without it? and I have been genuinely worried on several occasions that, in the absence of solid empirical evidence pinpointing a reason for my pain, that perhaps I am just imagining it?

Osteoarthritis and referred pain are tricky blighters, and actually pinpointing the source of the problem can be time-consuming and extremely frustrating. There have been several times in my life when I have had real debilitating pain, only to be told that there is nothing wrong with me; this was most pertinent when I was a child and it took some time to actually discover what the problem was, and I think those experiences left me with an anxiety relating to the importance of being believed and taken seriously by the medical profession, and this is especially difficult when you are a child. However, what I have realised only quite recently is that I have actually NEVER been wrong or complained out of turn where there has been nothing to find. I have also learned that I am, rather surprisingly, extremely tuned into my body and am very aware of what’s actually happening with it, even though it might take some time to find the source of the problem. Not only do placebos not work for me, sometimes my own expectations disappear before my eyes, and I now have complete confidence in my body to inform me of what is going on with it, and when to take action.

Now, back to my decision to no longer take opioids. I fully expected for my pain to continue to increase (after all, the opioids were my only meds specifically to manage the pain) and for my mobility to decrease even more. I expected to no longer be able to walk, even with sticks. What actually happened came as a complete revelation, the full extent of which I realised over the next week. Firstly, I experienced less pain, a lot less pain. I woke up with a feeling of extreme dread at the prospect of hauling myself out of bed and trying to stand up, but I managed this fine and managed to do all the usual problematic morning stuff without any major problems; several hours later, I realised that the pain was reduced and my mobility was ok, and this easing of pain continued steadily for about a week before stabilising. The most obvious and welcome discovery was that much of the pain had disappeared completely – my arms felt normal and the shooting pains which previously ran down them all the time had ceased. What I was left with was pain in my lower body which felt like classic OA symptoms, but I did appreciate that there was a physical reason for it, and felt reassured that the neurological pain had now gone. I was massively relieved, but very angry too at the realisation that the opioids had been creating all this additional pain. Better still, my head felt better, and stopping the opioids made me realise just how wasted I’d been for so long; I was aware that my head was constantly really fuzzy and I was scatty and forgetful, but until then I had no idea just how messy I really was.

I made a GP appointment, a different GP this time because I felt extremely disappointed in the previous one and have refused to see her since. My anger was more critical than anything else: Are you aware that these meds cause pain, significant additional pain? Why was I told to keep taking the damned tablets, and more, and more when my health is obviously deteriorating? I feel like I’ve been slowly poisoning myself for the past 2 years! And why (FFS!), am I being labelled with some neurological complaint when you haven’t even checked for arthritic problems, since my medical record is overflowing with OA issues?!? The new GP was good, and helpful and sympathetic. He reluctantly mentioned the possibility of Hyperalgesia and more specifically OIH, the result of over-exposure to opioid medications, but said it was rare and difficult to diagnose with any level of certainty. Again, I didn’t want another label so didn’t especially care whether I had OIH or not, I just knew I would be avoiding opioids from now on. This issue with opioids raises several questions, which are rather disconcerting: If GPs are aware that OIH can result from long-term prescription opioid use, why wasn’t my medication monitored more carefully? What are the alternatives to opioid analgesics for OA? (very few apparently, the pharmaceutical companies have become very rich on the back of massive prescription opioid use) What am I supposed to do now to manage the pain?!?

Although he had redeemed himself slightly with his honesty about OIH, this didn’t solve my more immediate problem of trying to manage my condition without any analgesics. I explained that I still had considerable pain and restricted mobility in my lower body, so I was sent for an x-ray of my pelvis. A couple of weeks later, another GP phoned back with the results: in comparison to the previous x-ray a few years earlier, considerable OA had developed in both of my hips, my left hip was classified as ‘severe’ with bone-on-bone contact, and my right hip ‘moderate-severe’, OA was also present in my lower spine, and it had developed rapidly, at a previously unanticipated pace. I was appalled, for several reasons. Firstly, the fact that the arthritis had spread – I never expected it to spread anywhere else, I had always assumed that I had a rubbish knee and it would stay in there. I saw no reason for it to go anywhere else, but clearly it had different ideas. Secondly, thanks to the opioids, I had no idea that I had an on-going serious problems within my hips. The opioids had done such an excellent job of dulling the physical pain and distracting me with other neurological pain elsewhere in my body, that I actually had no real understanding what was going on myself, let alone being able to explain the location and intensity of existing pain to medics, or discern between what was physical or opioid-induced neurological pain. And thirdly, surely but surely, when someone with a decades-long history of arthritis visits their GP complaining of being in pain, surely the place to start is to take a look at their joints, or wangle their legs about a bit just to check that everything is moving ok?!?

I was immediately referred to a consultant, and the surgery was performed 6 weeks later. This was the fastest procedure I had ever experienced with a joint replacement. With my knee, replacement surgery was confirmed as the only option and I had more than a decade to get used to the idea before the deed was finally done; but the hip x-ray was damning, and I underwent a full replacement on my left hip 10 weeks after the x-ray report was received. My head was reeling – I’d barely had time to even get used to the idea that my hips were knackered, before a shiny new joint was installed in there and begging for me to make far more effort with the physio.

“Why me?!” Chapter 6: Are we there yet?

Are we there yet? Well no, sadly not, and it appears that I still have another couple of are-we-there-yet chapters to write before we do get there. Reaching The Present and being able to write about what’s actually going on currently still feels just out of reach. It’s interesting how frustrating this can feel. In my head, I’m aware that my experiences of Osteoarthritis have gone on for a very long time, but somehow I have had this mistaken belief that I can just write it all down quickly before moving on to the present day, where my thoughts, feelings and experiences will be a lot easier to record since they are part of my present. Somehow it hasn’t worked like that. Dredging up memories and trying to assemble them into a combination of complex and accurate facts and a readable tale isn’t as simple as it would seem, and it’s something of an emotional roller-coaster as I find myself reliving times and experiences which, if I’m honest, I would prefer to forget. I continue to be amazed at how much and the level of detail that I do remember.

Flashback to a decade ago, I’d finally had surgery to rectify the problems within my left knee – a partial lateral replacement. The estimated recuperation time was 8 weeks, but the actual recuperation period was around 6 months. My employment status was now ‘unemployed’, my depression level was severe, and consequently, my level of self-esteem was extremely low. Healthwise, things had been difficult but were now improving slowly; I could now walk without a stick, I had plenty time due to being unemployed, and I spent a lot of time outdoors, gardening, dog walking, I’d started going to the gym to try to rebuild the muscle mass which had deteriorated and impacted on my ability to recover fully, and I continued with the post-operative physio exercises – after all, I’d been told I’d be able to run again, and I foolishly believed him. My mental health and self-esteem issues meant that no-one was queuing up to offer me work any time soon, so I had plenty time on my hands to focus on my physical recovery; I hoped that the mental health issues would sort themselves out as my physical health and mobility improved and a few months later, I managed to find some part-time work and returned to a relatively ‘normal’ kind of life, for a while at least.

But, I still experienced pain, nasty burning pain, creaking joints, stiffness, and rattling crunching noises within Bastard Knee. I went back to my GP – not to demand a refund or shout about being conned by this surgery, but simply to ask whether it had been successful because I really wasn’t sure. Some issues had been resolved, others hadn’t, and some new problems had appeared, so it seemed a fair question to ask. I was told, very gently, that my expectations far exceeded the realities of this type of surgery, and that I would most likely always experience some problems with it due to having to wait so long for the surgery to be undertaken. This was obviously not what I wanted to hear, but it sufficed as an explanation – at least it was honest. I was advised to continue taking opioid painkillers as and when they were needed, and I assumed that that was that.

A few years later, the pain became more difficult to manage and my limp returned, so I went back to my GP and was sent for a hip x-ray. The x-ray report came back as ‘normal for your age’ (I was now in my late 40’s) with some evidence of degenerative change within my left hip but seemingly nothing to worry about. I felt both puzzled and embarrassed, and began to wonder if I was just imagining the pain – after all, pain had been an integral part to my existence for so long, perhaps I was psychologically creating it in order to feel like my normal self? What do you do when something so familiar to you is apparently taken away? Do you psychologically create something else to take its place? Despite the embarrassment of wasting NHS time and money on this x-ray, in retrospect it has turned out to be an extremely useful image for comparison for the events that followed a few years later.

“Why me?!” Chapter 5: Be careful what you wish for…

partial-knee-2 In 2010, my arthroscopy was swiftly followed by surgery for a lateral unicompartmental knee arthroplasty – put simply, a partial replacement on the outer side of my knee. Yet despite scouring the internet for an accurate picture to accompany this post, I am left disappointed; my prosthesis looks nothing like this rather neat and immaculate bit of kit. Mine is a different shape, has four screws at various exciting angles which attach it to my bone, and the crazy desperation of the whole thing appeals to my rather warped sense of humour; I kind of like the idea of being held together with a few screws.

Once again I was informed that I was ‘an unusual case’, not simply because of my age (I was now in my early forties, so comparatively young for this type of procedure) but also the relative rarity of lateral partial replacements – a professional contemporary article states that this type of replacement was not only a more complex and challenging procedure than other full or partials, but accounted for only around 1% of knee replacement surgeries at that time, since damage is more commonly and readily sustained to the medial surfaces. The arthroscopy confirmed that there was absolutely no cartilage in the lateral compartment, just bone-on-bone, whereas the medial compartment, where arthritic deterioration is most often sustained, was completely healthy; it seemed I was the only one who wasn’t surprised at this. Evidently, the surgery performed in my childhood had done a truly excellent job of removing the cartilage, and had inadvertently created perfect conditions for osteoarthritis to develop and thrive. The “Why me?!” question returned with a vengeance, swiftly followed by its recently acquired companion, “Why am I so cursed with this Bastard Knee?” In my mind, there was only one logical conclusion; the surgery which was intended to rid me of problems within my knee had backfired badly, had actually caused a far more serious condition and major surgery was needed in an attempt to rectify this.

Unicompartmental, or partial, replacements are generally employed in ‘younger’ patients for a number of reasons, most often because the anticipated recovery and final outcome for them is considered far better than with a full replacement, but also because these patients will inevitably need a ‘replacement-replacement’ in years to come – this is most often a full replacement because it is extremely difficult to get ‘a good fit’ with a second partial. Furthermore, younger patients such as myself, who have not developed osteoarthritis at the anticipated age for onset and as part of the natural aging process, pose some additional issues with joint replacement surgery in that they do not necessarily respond to the procedure and treatment in the same way as older patients.

At this point, it was over 30 years since I first developed problems with my knee, and over a decade since I was informed that I urgently needed a joint replacement – the thinking and clinical decisions behind this ridiculous delay are in this previous post. I desperately wanted to have this surgery and totally believed that it would solve the many problems I had been experiencing with Bastard Knee and Stupid Leg. The procedure went ahead as planned, was considered to be a medical success, but sadly it didn’t turn out to be the miracle that I needed or had hoped for.

Thinking about having a joint replacement? Read on…

If you’ve been advised to have joint replacement surgery, listed below are a few thoughts which might be useful to you. I feel it necessary to emphasise two things here: firstly, I was not a typical patient for this surgery, as outlined above; and secondly, the waiting time for me to access this surgery was protracted because I was denied it for many years due to my relatively young age. Consequently, the final outcome is most likely not typical. If asked “Was it worth it?” the answer would be an absolute YES! It enabled me to walk again unaided and rebuild something akin to a normal life. But, it’s wasn’t an easy ride, and for myself, it is far removed from a perfect solution.

The surgery is extremely painful

It was far worse than I expected, and the pain was neither of the type nor the intensity that I had anticipated; I was totally unprepared for this, and really struggled with managing these levels of pain.

The pain is not necessarily where you expect it to be

Judging by the newly acquired scar on the front of my knee, I had assumed that this would be the site of most of the pain, but curiously not. The awful intense aching pain immediately post-surgery is actually behind the joint on the back of the knee, where all your muscles, ligaments and tendons have been stretched during surgery when the joint was opened up.

Lots of medication

Medication is your only escape from the pain, and you will probably be prescribed a lot of pills during the initial recuperation period. You will most likely be taking a combination of SAIDs and strong opioid painkillers, including morphine. Don’t argue, take them, take them all (as instructed, obviously)!! You will probably need to write down what you take in order to keep track of them and the correct dosage.

Movement and mobilisation

You will be expected to start moving the replacement joint as soon as possible; if it’s a knee replacement, the hospital staff will have you on your feet the morning after surgery, if not sooner, and you will work extremely hard to enable the joint to be weight-bearing. You will be provided with walking aids – a walking frame, sticks etc The sooner you mobilise the joint, the better the final outcome. It’s brutal, but necessary.

Physiotherapy

Physiotherapists at the hospital will come to see you and provide exercises to be completed at regular intervals; you will also get a list of exercises to do several times daily after discharge from hospital. The more you do these exercises, the better the final outcome, but… You will also be in a lot of pain, so stretching and exercising your new joint will be the absolutely last thing you want to do. Physio can be a bit of a psychological battleground.

Infections

Infections can occur in the joint in the weeks following surgery; sometimes this can happen during surgery or once you have been discharged from hospital. If you develop an infection, you’ll know about it because you will feel very unwell. Your GP will probably prescribe antibiotics or refer you back to the hospital.

Recuperation period

The official recuperation time is said to be 6-8 weeks following knee surgery, and 4-6 weeks following hip surgery. These are estimates, and everyone heals differently. Interestingly, the assumptions about healing times are often based on age – basically, the younger you are, the quicker your body will heal – and presumably your lifestyle will impact significantly on the time you take to heal. If you are a typical joint replacement patient, you will probably be retired, so can take as much time as you need. If you are of working age, however, the pressure is on to recuperate and return to work asap; in my opinion, these anticipated recuperation periods are massively unrealistic.

Support at home

You will be discharged from hospital when you are barely mobile, usually a couple of days after surgery. YOU WILL NEED HELP AT HOME to help you with basic care, washing, bathing, dressing, and to ensure that you are safe and don’t fall.

Patient age

Yes, back to this yet again! Most patients who have joint replacement surgery are over the age of 60, so if you are a younger patient you will be alongside patients who are a decade or two older than you. The ‘age’ thing is far more relevant in relation to ideas about healing and pain. The assumption at this time (2010), was that because I was significantly younger than the other patients, I would heal very quickly; this is most certainly NOT the kind of pressure you need after having this procedure. In the real world, the opposite happened, and my body took a very long time to heal, far longer than anyone expected; it was around 5 months after surgery that I felt my joint had strengthened and I could actually walk without a stick. Interestingly, more recently, theories and thinking relating to age and healing have now reversed, and it seems to be generally accepted with this kind of surgery, that older people actually feel less pain and heal faster than younger patients, and there are physiological reasons for this.

Your life ‘on hold’

You will have absolutely no idea how much time you will need to recuperate and mobilise fully; how you will respond to the procedure? how well you will manage the pain and medication? whether infections will set you back? how you will deal with the psychological difficulties of this experience? and how much, if at all, your life will change because of the procedure. I would suggest you don’t book any expensive holidays or make arrangements for big family events etc. and please forget “Well, the surgeon said it’d be 4 weeks…” As stated above, my recuperation period was embarrassingly long, I felt really quite ashamed of myself and really frustrated with my situation, perhaps more so because at the time it was expected that I would recover quickly. Also, during this period, I lost my job – a fortnight after surgery, my employer was phoning me & showing up at my house on a daily basis, harassing me about when I would return to work. I hadn’t worked there long enough to acquire any working rights so it was easy enough to get rid of me. Always hated that job anyway…

Stay grounded and realistic in your expectations

Guilty as charged, and gullible as hell, he must’ve seen me coming! I believed everything the surgeon told me – I’d have a leg which would function normally again, no more pain, no more problems, I’d be able to run marathons, etc etc. It’s cruel really, a dose of honesty would have served us both better and I would have been more prepared for a realistic outcome. Stay grounded, people, and anything extra is a welcome bonus 🙂

Other people with joint replacements

I’ve added this in at the end simply because they annoy me so much! In my opinion, joint replacements are not perfect – they are marketed and pushed as a perfect solution, but my experiences of them tells me that they’re not. Maybe because I had to have an unusual one in my knee that the outcome wasn’t as great as someone who has a different, more commonly used prosthesis? Or maybe it’s because I’m honest and not afraid to say that “Yeah, this part is good, this is OK, but this is pretty crap because I still can’t do a, b or c” It’s interesting how many people with joint replacements are very reluctant to admit to having any problems with them, or maybe they genuinely don’t have problems with theirs? I don’t know, but what I really hate is that they challenge you and disagree with you when you dare to suggest that it’s not a perfect solution. Sometimes, I could cheerfully punch such people; they make me feel bad about myself, that my replacement was a failure, maybe my surgeon was a bit rubbish, maybe I should’ve paid to go private, maybe if I’d made more effort with physio… so it’s actually all my fault that my replacement isn’t that great. But I know deep down that that’s all nonsense; it is what it is, not perfect, but it’s a damned sight better than it was before, and that’s good enough for me.

“Why me?!” Chapter 4: A brick wall and a shiny new knee

cropped-bone-on-bone Fast forward through the first decade of the new millennium and it was a brave new world of possibility and optimism in the world of orthopaedics. Since stomping off (or rather, slowly limping) from my previous consultant appointment a decade earlier, I had made a conscious decision to avoid such things in the future, go into complete denial if necessary, and had taken his parting words quite literally: “Come back when you can no longer walk…”

I was now in my early 40’s, and I hit a brick wall. I’m not especially comfortable with using the word ‘crisis’, but I haven’t yet come up with an alternative which suitably describes the situation of when your life grinds to a halt, and you have no choice but to take action unless, of course, you want to stay there forever. This was my first ‘arthritic crisis’, and rather alarmingly, has not been my last. I was working full-time, did an arduous commute each day, and my limp and lumbering gait were now very pronounced; as the pain increased my mobility decreased, and my mental health deteriorated rapidly. I found it difficult to walk, drive, work, stand, sit, sleep… Myself and Bastard Knee were referred to yet another orthopaedic consultant.

It was immediately apparent that progress and improved technologies had brought about massive change in what was previously a rather dark and dusty world. The consulting room was gleaming, bright and equipped with all sorts of flashy screens and technologies, and the consultant was a rather cool and groovy guy with excellent people skills, who apparently had a particular penchant for playing Pink Floyd very loud whilst performing surgery. This was all a very welcome change from the rather dusty world and balding consultants of the past who muttered to themselves as they scribbled away with their scratchy fountain pens and endlessly rummaged through piles of folders containing yellowing paperwork from decades earlier. I now had an electronic file, and the consultant viewed my x-rays with a strange combination of curiosity and excitement, almost gushing about me being “an unusual case”. He immediately offered to perform an arthroscopy, the purpose being to take pictures inside my knee and check the condition and location of any cartilage within the joint, just to confirm that the best outcome would be a unicompartmental knee replacement on the lateral side of my knee where the cartilage had been removed. I did ask about how long I would have to wait until this could be performed, but he reassured me that the new joint replacements were quite different from those available in the past and that surgery could be performed when it was needed, regardless of patient age. He added that I would be one of the youngest people to have this procedure, which perhaps went some way to explain his evident enthusiasm, but I didn’t feel that this situation was something to be especially proud of; in my head, I was still angry that I had developed an old people’s disease, and only old people got joint replacements. Nonetheless, I was really pleased that I could now go ahead with the much-needed surgery, and fully believed that it would resolve my various pain and mobility issues. The surgery went ahead as planned, but sadly it didn’t turn out to be the miracle that I needed or had hoped for, and the reasons for this will be covered in another later post.

Because the previous age restrictions for joint replacements were no longer an issue, the new surgical procedures and replacements had a huge impact on the number of surgeries performed. Even though I was an NHS patient, both my arthroscopy and replacement surgery were performed in a private hospital, and this practice has continued to the present day. It is possible that the demand for joint replacements is now so high, that the NHS simply doesn’t have the capacity to deal with it so patients are ‘diverted’ to other health providers for their surgery. This continues to be the case now, and the idea of joint replacement surgery, certainly within the UK, has morphed into an efficient and lucrative business.

“Why me?!” Chapter 3: But arthritis is something old people get, isn’t it?

oldpeople

Well, yes and no… Osteoarthritis is generally believed to be a degenerative condition which affects older people, an undesirable but natural part of the aging process; it is often described as ‘wear and tear’ on the joints, the direct result of a thinning of the articular cartilage layer. However, it has also been argued that osteoarthritis develops because the aging of the musculoskeletal system increases susceptibility to osteoarthritic conditions. Click here for more information about osteoarthritis and age. Risk of developing the condition certainly increases with age, and most people over the age of 50 will have developed some minor symptoms, which are generally the inconvenience of a few minor aches and stiffness rather than full-blown arthritic pain. Gender is also a determining factor, with the number of women aged 50+ far outweighing the number of men in the same age group who have the condition. Click here for an article about women and osteoarthritis.

So, it seems fair to say that the majority of people with an osteoarthritic condition are middle-aged or older, but there are also many others who develop it at a younger age and for a variety of different reasons – in my case, I believe that the surgical removal of articular cartilage from my knee when I was a child is the most obvious reason for me developing the condition. Being ‘an unusual case’, such as I was, brings with it a number of difficulties which are additional to the condition itself; during the 1990’s, my relatively young age actually prohibited me from obtaining the treatment I needed at that time.

My life as a Juvenile Degenerate continued much as expected. In my twenties, I walked with a slight limp, I could no longer run but could manage a rather slow and lumbering jog if absolutely necessary, and I experienced manageable pain on a daily basis. I had finished college, had a couple of jobs, had worked abroad, and become a mother By the time I was 30, I began to experience much higher levels of pain, my mobility had deteriorated, I now limped badly, I couldn’t move quickly even if my life had depended on it, and I was finding it extremely difficult to fulfill my role as the mother of a busy and energetic pre-school daughter. I was referred once again to an orthopaedic consultant.

This particular consultant had a reputation which preceded him, not only was he a brilliant surgeon, but was equally well-known for his brusque, if not downright rude, manner. He was internationally revered and spent much of his time performing orthopaedic miracles around the globe. I considered myself very lucky to have been referred to him, and was extremely impressed that humble NHS patients such as myself could receive care from such esteemed professionals. During our first consultation, he announced that I urgently needed a knee replacement. In those days, ye olde joint replacement surgery was somewhat different to the relatively recent carbon-fibre replacement surgeries of today; outcomes were inconsistent and erred more on the side of ‘unsatisfactory’, some patients experienced more pain and less mobility as a result, and some designs were at best inadequate, or at worst flawed. It was a challenging surgical procedure, knees being an especially complex joint, the success rate was poor, and they were expensive; most crucially, you could only have one replacement per joint, which was intended to last for the remainder of your life. For ‘younger’ arthritis sufferers such as myself, this was bad news – I was informed that the procedure would go ahead when I reached the age of 55. Under normal circumstances, this was the minimum patient age that the surgery could be performed, so I was looking at a further 25 years of waiting until the procedure could go ahead.

The consultant did offer a couple of alternatives to tide me over until I was old enough for the surgery. Firstly, because my x-rays revealed significant quantities of attached and loose osteophytes which were rattling around, he suggested keyhole surgery to try to clear the joint of bone spurs using a suction tube; this is probably similar to today’s lavage and debridement procedure. Secondly, he offered to undertake an osteotomy, a procedure where the tibia or femur have a wedge shape removed enabling the leg to be realigned, the purpose of which is to relieve pressure on the affected joint and thus reduce overall pain. I accepted the hoovering-out option, and several of the offending escapee bone spurs were successfully removed, the biggest offender being 8mm in length which had taken up residence next to a nerve; however, I declined the offer of an osteotomy because I found the prospect quite terrifying.

For about 6 months after the hoovering-out procedure, the pain was reduced and my mobility improved, but it was only a temporary fix and not intended to resolve more serious problems within a joint. About a year later, the consultant conceded that it would be necessary for me to have a knee replacement before the magical age of 55, and to return to him again to get things started when I could no longer walk or drive or get on with my life. At the time, I was absolutely appalled at his attitude, but in retrospect I think this was entirely the right thing to do. As mentioned above, the old type of knee replacements were notoriously unsuccessful, and as an eminent orthopaedic consultant he would have been very aware of the state of progress in the design, materials, and improved surgical procedures for the flashy new carbon-fibre replacements which emerged less than a decade later. These new replacements had a relatively short lifespan of around 10-15 years in comparison to their rather ineffective predecessors, but the newly emerging replacements had a significant advantage for younger arthritis sufferers – they could be replaced, and you could have as many ‘replacement-replacements’ as was deemed necessary. I genuinely believe that this consultant’s plan all along was to make me wait as long as possible so that I would, eventually, get a much-improved type of replacement and a far better surgical outcome than if we had rushed into surgery at an earlier stage. It’s just a pity that he didn’t share this with me at the time, since I was in a state of absolute despair that day when I left his clinic.

“Why me?!” Chapter 2: A Juvenile Degenerate

In 1977, I underwent my first orthopaedic surgery, fully believing that it would also be my last. Keyhole surgery was in its infancy, so I emerged after a traditional surgical procedure sporting a 10cm scar across my knee which looked strikingly similar to a question mark. The cartilage in its entirety had been removed from the outer side of the knee joint, and the answer to the “Why me?!” question was self-evident – I had damaged my knee, most likely due to an overzealous approach to athletics, and had earned myself a scar. In those days, scars were not considered to be cool or something to be proud of with a heroic or amusing tale attached to them, and my reaction to it was one of deep shame and embarrassment. I covered it up whenever possible, and have continued to do so ever since.

Following the recuperation period, I was told that all had apparently been successful, or at least as successful as could be expected. After a few weeks of using a walking stick, I learned to walk independently and finally learned to run again, but now it was purely for fun rather than speed, and the exhilaration I had felt before no longer existed. I was noticeably slower than before, but still participated in PE lessons and played in school teams, although I was no longer considered physically well enough for anything too strenuous or demanding. Occasionally, however, the leg would ‘collapse’, but these incidents were rare, and almost always when I was doing something physically strenuous. I also noticed that ‘high impact’ or sudden movements highlighted the fact that it was now significantly weaker than my other leg, so after a few years, I became less interested in sports and running, possibly because I’d morphed into a sullen teenager, or perhaps because I was experiencing increased pain within the knee and left leg and had developed a slight limp so was no longer an enjoyable experience.

By my mid-teens, the knee had earned itself its first name: Knaughty Knee, the first of several names I have had for it over the years. Psychologically, I had begun to disassociate with and even disown it – I now referred to it either with a derogatory name, or it was spoken of passively, using ‘the’ rather than the usual possessive adjective, ‘my’. Following more pain and consistent problems with it, I was eventually referred to another orthopaedic consultant who informed me that I had developed mild osteoarthritis in my left knee cap.

It was official, I was now a Juvenile Degenerate, my new name for myself. My knee had also earned itself a new name, Bastard Knee, and I now referred to my left leg as Stupid Leg, as I slowly disassociated myself from both whenever possible. The “Why Me?!” question had also acquired several somewhat different answers: because the surgery didn’t work? because that particular surgery was the wrong thing to do?, or because by removing the cartilage, my knee was left wide open to the development of osteoarthritis? My conscious attitude to this new situation was one of disdain, regarding it all as a rather bad joke; I continued to sneer at my body and regularly made deprecating remarks about it – after all, who needs a leg that works properly anyway, and hey, I’ve got another one and it’s much more co-operative than that stupid left one! Subconsciously, I was furious. I had always held consultants and surgeons in high regard, and continue to do so; after all, they possess reams of knowledge I couldn’t even begin to comprehend and skills which I could never acquire. I wasn’t looking to apportion blame, however, something had gone badly wrong here; rather than resolving the specific issue of dealing with a raggedy cartilage, I appeared to have gained a medical condition which had the potential to be far more damaging and enduring.

I was an unlikely ‘candidate’ for osteoarthritis. The contributory factors for developing the condition are as follows: genetic predisposition, age and gender, obesity, physical activity levels, joint injury, joint alignment, and abnormal joint shape. As stated previously, I appeared to have no genetic disposition towards it, and as a woman, my likelihood of developing it before the age of 50 was significantly lower than if I had been male. The only contributory factor which I appear to have met at this point, was that of joint injury, and the inevitable answer to the “Why me?!” question was now “because I had a surgical procedure which creates more problems than it resolves”.

It is reassuring to know that this particular surgery is no longer practised; interestingly, I can’t even find the correct name for it or details of it online, so presumably medical professionals have realised that it is not simply an inappropriate course of action to take, but it has the potential for creating further, more extensive damage to an individual’s joints. However, a modified version does still exist; surgery is still undertaken to deal with rogue bits of knee cartilage, but it is restricted to simply trimming away any torn areas and no attempt is made to remove the cartilage in its entirety.

For more information about cartilage damage and NHS care and procedures, click here

“Why me?!” Chapter 1: Early Years

I have experienced chronic pain and intermittent reduced mobility resulting from osteoarthritis since childhood. Four decades and a couple of joint replacements later, the arthritis continues to spread and I have further orthopaedic surgery to look forward to in previously healthy joints.

“Why me?!” is a question which has haunted me for a long time, although in my youth, it pertained simply to considerations of my own sheer carelessness, bad luck and frustration, rather than a more serious consideration of the likelihood of why a particular individual might develop arthritis.

I was born ‘healthy’ with no known physical abnormalities, and was sufficiently fortunate to be born into a family with no history of juvenile arthritic conditions. I enjoyed sports at school, practised gymnastics and athletics, and had a passion for running, especially 400m sprints; I loved the freedom, weightlessness and exhilaration that always came with running.

This is the first time I have recorded any of these experiences, and am already amazed at how vivid my memories are.

By the time I was about 9 years old, I began having problems with my left leg; it would ‘collapse’ (as I used to describe it) when I was doing PE, I would find myself sprawled on the ground, there was an intense burning pain inside my knee, and I was unable to stand or walk for several minutes. These experiences were both painful and humiliating; the intensity of the pain always made me cry, and then I felt really ashamed in front of my classmates, firstly for crying in front of everyone, but also for being unable to stand or walk. The knee itself was red, hot and very swollen and it took some time before it would straighten again and function normally. It might then be several days before the next episode.

After several visits to the family doctor, our GP declared that he couldn’t find anything wrong with my knee or my leg (although, of course, it never ‘collapsed’ in his presence) and he suspected that I was lying to gain attention for some reason (!). However, he did finally refer me to an orthopaedic consultant at the local hospital. After further x-rays, the consultant declared that he ‘suspected’ that I had torn part of the cartilage on the outer side of my knee; it isn’t possible to see cartilage on an x-ray, but his clue was that the spacing between the bones was inconsistent, and he could also feel something moving around inside my knee cap, which he thought was probably a piece of cartilage which had torn or detached. He recommended surgery to remove the cartilage from the outer side of my knee, and added that if this surgery wasn’t undertaken, I would be unable to walk and using a wheelchair by the time I reached the age of 20. It seemed a situation with everything to gain and nothing to lose, so the consent papers were signed and surgery went ahead. I was then 10 years old.