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.

The Big Bruiser

It’s now just over a week since surgery, and I need to prepare myself psychologically for my first meeting with The Big Bruiser. Bruises Tomorrow is the first day that I can avoid this no longer; tomorrow my bandage will be taken off, sutures removed and there it will be, in all its hideous glory, The Big Bruiser #2. This time last year was the first of these wounds that I’d seen, so I’m assuming and hoping it won’t be as much of a shock this time around. It was bigger than I expected, as well as lumpier, uglier and more bruised, but what really stuck in my mind was how like a lump of raw battered meat it looked. My daughter came along to photograph it – yes, we’re close like that, we enjoy sharing gory stuff – and even now those first photos of it fill me with a feeling of extreme nausea. But, then again, as I keep telling myself, it’ll be much easier this time round because not only have I done this before, it was also very recent. Which begs the question, why aren’t I handling the whole situation better?

Orthopaedic surgery inevitably means bruising, not the genteel constrained type as in the picture above, but mega-bruising which can cover significantly large areas of your body. Bruising occurs following some kind of injury and your blood capillaries leak into the surrounding soft tissue thus creating discolouration on the skin’s surface. I’ve spent the past few days trying to deal with both the physical and psychological impact of post-surgical bruising, and have to confess to struggling a bit. For the first couple of days after surgery, there was some swelling and a bit of nasty bruising around the wound but nothing unexpected, but this swiftly morphed into the bruising bonanza of the past few days. Rather stupidly, I didn’t recognise it as such at first, what I saw was massive swelling in my leg and a lot of new pain which took me spiralling into panic mode, phoning the NHS out-of-hours services, and then feeling very foolish and selfish for wasting their time on something which is part and parcel of the process. Bank Holiday weekends are never helpful – when you’re panicking, everything seems a whole lot more urgent than it really is, and the fact that I had to wait around 12 hours before I could see a medic meant I was almost at hysteria level by the time they arrived and provided some desperately-needed reassurance. Since then, I’ve calmed down a bit – the next day, bruises emerged in the swollen areas and this reassured me about what was happening and continues to happen.

At the time of writing, I’m having another night of not much sleep. It’s the early hours of the morning, I’ve been up for a few hours already and have an ice pack slapped on my leg in an attempt to tame the swelling a bit. I suspect it’s a lost cause, but I’m trying because although I’ve now aware that I’ve hit ‘bruising phase’, I’d really like to reduce the swelling somehow in order to reduce the pain and enable a better level of mobility – ie. one where I can actually bend my leg and use it properly, rather than having to drag it around with me like an inflatable child’s toy. Bruising and swelling is difficult stuff, especially post-surgery because there is very little you can do to contain it. At present, I need to take anti-coagulant medication for a further 5 weeks – they thin my blood in an attempt to reduce the risk of blood clots – but in doing so, I am not able to take NSAIDs (anti-inflammatory medication) alongside these. Attempts at reducing swelling and managing bruising are limited to the simple things in life – keep the limb elevated, and keep slapping on those ice packs. Hardly the stuff of rocket science, but I’m hoping that if I keep at it, it might reduce the pain a little.

The other thing which has interested (and shocked) me about all this is how little I remember about this last time. I would’ve expected that it would be indelibly engraved on my memory forever, but apparently not. My other hip was replaced around a year ago, and I’m surprised at how much I’ve forgotten about the healing process, and how easily I slide back into trauma mode. I think the lack of mobility is partly to blame for this, because at present I really don’t have much flexibility – all I have is an awareness of varying degrees of pain in various areas of my hip or leg, but I can’t bend or reach down or touch to see what is happening. The inability to collect visual information about pain or a physical restriction is frustrating and a bit scary – I can’t see it to make a rational decision, but it feels bad so I’ll panic in my blindness instead and assume that something terrible is going on. I can conclude, then, that what are described as ‘the delayed symptoms of massive physical trauma’ (swelling, bruising) are now coming out to play, and alongside that are the symptoms of the psychological trauma I always seem to experience in this scenario. I’m generally not a weepy or panicky kind of person, but this stuff reduces me to a total coward and a gibbering wreck, and I really wish there was more post-operative support alongside these procedures. I mean, yes, there is – if I’m worried, I can call the hospital or get an ambulance to take me to A&E, but that’s not what I’m talking about here and not something I feel is an appropriate thing to do, unless I’m dying. What I want and need is more psychological support alongside the healing process. No, I’m not ill, but yes, I’m in pain, have all sorts of strong drugs racing through my body 24 hours a day, and my body is going through huge and varying degrees of change and healing which I don’t understand, and my head is, quite simply, fucked up. Meanwhile, my scheduled (read as ‘necessary’) appointments are as follows:

10 days after surgery, appointment with Practice Nurse to check wound, remove bandages and sutures
2 weeks after surgery, option of attending face-to-face physiotherapy appointments on weekly basis
6 weeks after surgery, appointment with Consultant surgeon to check progress of wound and mobility

I’m sorry, but for me, that’s not enough; I suspect that I’m not alone in feeling that I need some level of support with the psychological impact of this procedure, and that many more people would benefit from a more personal, caring and holistic approach to post-operative care. I’ve said it before and it seems that I need to keep saying this until perhaps one day someone will either listen or hear me: I AM MORE THAN JUST MY BLOODY BONES!! You’ve fixed my bones, now I need help dealing with the trauma in my head…

Last day of freedom

Today is my last day of freedom, at least for a while. mans-dirty-arms-grabbing-at-the-air-through-metal-bars-from-dark-interior_hzpmfrh8g_thumbnail-small07 By freedom, I mean being able to be independent, to drive wherever I want whenever I want, to do stuff alone without having to have someone with me to help me do the most basic and mundane of tasks, to have some semblance of control over what goes on and what is possible, and to not be housebound and needing someone else’s co-operation, permission or approval to venture out. For me, this is the stuff of nightmares. I hate being dependent on anyone, really hate it; it embarrasses me, humiliates me, frustrates and angers me. I’ve never been especially good at asking for help, which is probably why I find this so difficult, but there’s a big difference between the normal scenario of asking for help with tasks which no mere mortal could manage alone, and asking for help to get up or down from a chair, to support you as you attempt to go up or downstairs at snail’s pace, and to ask for help getting on shoes, socks and even knickers. The latter situation will be my joyless existence for the next few weeks, and I feel massively irritated at the prospect already.

Bearing all this in mind, I was determined to make the most of today, my last bid for freedom if you like, my last day before surgery; to assert my independence as much as possible (within my current physical limitations at any rate) and ‘do stuff’ – nothing exciting, just walk the dog and deal with the domestic joys of cleaning / washing / gardening in order to minimise my need to ask anyone for any help over the coming weeks, when I’m officially incapable of doing anything more than shuffling around very slowly. But despite having my ‘positive head’ attached when I woke up, it all seems to have been a bit of a miserable sort of day, and I’ve really struggled to complete much at all. I thought I was really looking forward to walking the dog; the sun was shining, there was hardly anyone around, the landscape was spacious and stunning, but somehow my head was somewhere else so I didn’t stay out as long as I’d planned (which was a real shame because I won’t have another chance to do that again for a while yet). The domestic bliss of a clean and organised house never really materialised either, all the tasks I’d set myself seemed extremely arduous, physically exhausting, and didn’t bring with them the satisfaction I’d hoped for. It took me until mid-afternoon to realise that my heart just wasn’t in anything today, that I was most likely more than a bit twittery about tomorrow’s surgery, that whatever I tried to achieve today would probably feel disappointing, and that all I really knew for sure was that I felt exhausted and rather weepy.

Tomorrow, I will be undergoing surgery for a hip replacement in my right hip; my mobility will decrease immediately and massively, as will any attempts I make at asserting my independence. It is now almost a year since I had a replacement in my left hip, and in view of this I have decided that I should perhaps redefine my arthritic condition, since these days it seems less of a condition and more of a career than anything else; if only my condition had enabled me to have a decent vocational career alongside it, it might feel less of a burden, but alas, no. My arthritic career seems to be going from strength to strength, whilst my vocational prospects seem to be ever diminishing. I’d really like to be able to have a break from all this; undergoing two replacement surgeries within the space of a year really is too much, but I don’t seem to be able to make the necessary progress towards having a body that functions correctly by any other means. Perhaps tomorrow’s surgery will be a further stepping stone towards that, and then, maybe just maybe, I can get a bit of distance away from all this seemingly endless miserable stuff?

“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.

A tantrum, some cold turkey, and an epiphany

A week ago, I had a temper tantrum. It isn’t something that I am especially proud of, and thankfully it happens rarely, but when I do kick off, it is invariably about medication – the frustration of meds not working as they should, the horrible pain that never stops, the side effects, the general feeling of hopelessness about the whole situation, and the annoyance with myself that I’ve fallen for it yet again despite knowing that it simply doesn’t work for me. I’ve been here before, about a year ago, when I had a mega tantrum; I went off in a sulk, immediately stopped taking opioids and was astonished to find that I experienced far less pain. So why don’t I learn? What is it about my messy head that makes me keep reaching out for something which has proved, not once but twice now, that it actually creates more problems than it resolves?

I started taking a very low dose of opioids again in January. I’d stopped taking them about a year earlier (after the especially impressive tantrum) and apart for a couple of weeks of being blasted with morphine due to more surgery last summer, hadn’t taken any since. By January I was struggling to walk, was fed up of being on sticks, took an age to cover even the shortest distance, and had been told that opioid intolerance is short-lived and that after a couple of months’ break they would provide effective pain relief once more. So, stupidly, I started taking a very low dose of them once again. As anticipated, it all went swingingly for a couple of weeks, all that lovely warm fuzzy feeling tingling throughout my body, diminished pain, and a feeling of being totally wasted for several hours every day – what’s not to like?! But, a month later, it turned. There was more pain, widespread pain, no lovely fuzziness and feeling too bombed out to function even at a basic level. I gave it another month before realising that I needed to stop taking them because there was simply no obvious benefit in continuing. No tantrum , just a simple acceptance that this wasn’t working and I needed to stop.

Anyway, who needs opioids? Not me, I had a Plan B. Following a raid on my rather shamefully large stash of scary medication, I dug out some non-opioid strong pain killers and decided to give them a whirl again. I’d been prescribed them post-surgery last year, and apart from a few stomach issues, I couldn’t remember anything worrying about taking them. Feeling somewhat smug at ditching the opioids and optimistic about taking a non-opioid alternative instead, I took the first dose. After about half an hour they kicked in – the pain all but disappeared, as did my cold symptoms (an unexpected bonus), however I experienced very strong nausea, clamminess, cold sweats, shakes, drowsiness, feeling totally wasted (again), forgetfulness, disorientation and diarrhea for the next couple of days. I’d taken one of a possible three doses for the day. Needless to say I didn’t take any more, I’d rather deal with pain than all that stuff, and the side effects finally wore off after about 4 days. The tantrum began on Day 1 then tailed off a few days ago. I decided to not take any more medication, but I do feel incredibly upset and frustrated that, in the 21st century, we don’t seem to be able to find any medication which deals with this type of chronic pain, that enables a person to carry out simple daily activities without it being a major achievement, and to ease the co-morbidity of associated mental health issues and depression. My condition and type of pain is not in any way unusual, but I now totally despair of finding anything which can improve the quality (or lack of) of my life and feel completely let down by the medical profession.

Tantrum over, and I am now ‘pill free’. My pain is now managed by my ever-faithful hot water bottle, which is my constant companion (and, incidentally, appears to possess more pain relieving properties than any of the painkilling medications I’ve been prescribed). I’m currently experiencing what I hope is the tail-end of the ‘cold turkey’ phase – my body screaming out for opioids by producing various nasty aches and pains, but my brain’s not buying into that nonsense. I’ve been there before, and am in no hurry to go back.

scan-comparison Stopping all medication isn’t any easy option, and probably doesn’t work for everyone, but if you can manage to do it, there are massive benefits in doing so. These two images are very revealing (no pun intended) in that they are records of the pain I experienced at specific times. The image on the left shows the pain I experienced on a particular day around a fortnight ago – it is not unusual for that time, the other days are much the same. Clearly, there is widespread pain in most areas of my body; most significant is that at this time, I was taking a low dose of opioids and a continuing long-term dose of NSAIDs. The image on the right is from yesterday, almost a week since taking any medication, and what is screamingly obvious in this is that the pain is less widespread, very specific and logical – basically, the pain is there because there is a physical reason for it, in this case, it is because of arthritic deterioration in my right hip. What I find astonishing about these images is the amount of pain and distortion which painkillers and NSAIDs can cause. I’ve recently had several visits to medical specialists (leg, knee, spine, musculoskeletal etc) all of whom are trying to diagnose what the problem is and where the pain is coming from, and they’re struggling. I originally started creating these diagrams to help them with this, thinking it might be a useful tool for them to consider, however, looking at these images, it is clearly incredibly difficult to diagnose anything where medication is interfering with my body’s pain receptors alongside the side effects of supposed painkilling medications.

The epiphany of ‘pain killers create more pain’ is difficult to accept, because it undermines much of the conventional approaches and treatment of chronic pain. It is also worth noting that not everyone has such issues – many people manage chronic pain with opioids with no such responses to them, as I did for around a decade. However, now that my body is clearly intolerant to them and I may also have developed OIH (opioid induced hyperalgesia) as an added bonus, it is vitally important for me to find alternative ways of managing my pain – and if that means no medication, so be it. Coming off the meds is rough, physically and psychologically, and I think I must be pretty desperate to even attempt it. As you might expect, the physical pain is more intense than when using painkillers, but not by as much as you might expect, and psychologically I have found I am more able to manage the impact of the pain because it is far less widespread and there is a real physical reason why it is there. Finally, what I really appreciate about this, is that my head has regained a bit more clarity, I am now less muddled and I can think more clearly; it’s like a heavy fog lifting, and finally what you see is clear.

Joined At The Hip

osteoarthritis-final-1170x500

We’re inseparable, you and I.

Wherever I go, whatever I do,

From events of importance to the mundane daily trivia,

You are always with me,

An unrelenting presence

Consuming my body and penetrating my mind.

When you first introduced yourself,

I’d barely hit adolescence.

There was considerable head shaking, disbelief even.

“She’s way too young for this. How can this be?”

And they were right –

You were far too old for the likes of me.

Nominal interventions to get rid of you failed.

I learned to adapt and reluctantly accept that

You were here to stay.

Crunching, grinding, crumbling,

Bone eroding to dust,

Rattling osteophytes detach and stab into my nerves,

Gasping, whimpering, wincing and weeping.

Bone on bone, friction, abrasion,

Burning, aching, throbbing,

Limping, shuffling, hobbling.

You are much more than a degenerative disease.

You are a malignant parasite,

A sadist, a narcissist, a controlling monster,

A shameless attention seeker

Who heaps pain and humiliation upon me with every movement.

I reluctantly surrendered a part of me to you long ago

But your greed knows no bounds,

You always want more,

As you continue on your quest to consume me,

Utterly and completely.

But what will you do then, when the job is done?

When there’s nothing left for you to feed on, damage, destroy?

You have taken over my world,

And I have no choice but to adapt my life

To accommodate your gluttony.

My hopes, aspirations and opportunities

All modified, dashed or carelessly abandoned

As you, slowly but surely, dominate my past

And take control of my present and my future.

Disintegrating, decaying, fragmenting,

The fragile relentless rot of a dilapidated broken body.

You are my whole world,

You define me.

I limp therefore I am.

“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.

Having trouble getting hold of your prescription opioids?

Nah, thought not… Rather shamefully, it seems far easier getting con146652 my hands on large quantities of opioid analgesics than it is to buy over-the-counter paracetamol.

The opioid analgesics prescribed in the UK are intended to manage pain which is classified as ‘moderate’, so are commonly used to alleviate the symptoms of osteoarthritis. Co-codamol is a compound of paracetamol and codeine, the effect of the codeine having greater impact when absorbed into the body alongside paracetamol, and it is increasingly found in low doses in non-prescription medications such as cough and cold remedies. However, codeine is derived from opium, is a narcotic, is classified as a Class B drug (Class A when administered by injection), and can be habit forming. Over-use or abuse of codeine can cause nausea or vomiting, euphoria, memory loss, lack of co-ordination and fatigue; similarly, if you have used codeine for a long time then stop, you might experience withdrawal symptoms such as irritability, anxiety, insomnia, muscular aches, heavy sweats, diarrhea, nausea, sickness, stomach pains and goose bumps. So what’s the big deal with codeine and codeine-based medications? Judging by the list above (which is by no means exhaustive) it begs the question of why this drug is being used so often, by so many, and despite the Opioids Crisis, why it continues to be prescribed in such quantities?

The body has the capacity to produce natural opioids, however, when levels of pain increase and the body cannot meet the requirements to manage this effectively, prescription opioids fill the gap. They work by attaching to the body’s pain receptors in the brain, digestive tract and spinal cord, imitating the body’s natural neurotransmitters and effectively saturate the brain with dopamine. Dopamine floods the body with feelings of pleasure and well-being, and the analgesic capacity tells your body that there is no pain. So what’s not to like about this? The quantities of prescription opioids within the body is excessive, causing over-stimulation within the brain; a reduction in the levels of pain experienced combined with feeling more than a bit stoned are the rewards for continued opioid use, and herein lies the root problem of opioid dependency.

My own experience of using opioid analgesics goes back at least a decade, which means I’ve had plenty time to weigh up the pros and cons of this specific route of pain management in my particular circumstances. The use of these drugs to manage long-term health conditions is, in my opinion, ridiculous and an inappropriate medical route to pursue. My understanding of why this decision was considered to be ‘the way forward’ was to better enable me to manage my pain symptoms, and as a result to keep me on my feet, enable me to continue working, and to have some level of comparable ‘normality’ in my life for someone of my age. On the surface, this seems all well and good, but in retrospect I feel annoyed with myself for being so naive and not demanding a more pro-active approach.

Opioid analgesics, narcotic painkillers, or whatever name you want to call them by, are simply painkillers with the potential to become addictive. Painkillers do not resolve health issues, they simply confuse your pain receptors into believing that all is well and your brain accepts this. Pain conveys a vitally important message to the brain – it says that something hurts, something is wrong, and because it hurts you should be careful how you use that particular part of your body until it repairs. Opioid Analgesics delude the brain, they tell you that all is fine and groovy, nothing is wrong, your body is in great shape, go and do a spot of parkour if you fancy, all will be good and no harm done.

Due to the habit-forming nature of prescription opioids and the Opioid Crisis, medical bodies are pushing for increased levels of professional awareness, self-awareness of patients, and monitoring of opioid use, as this 2011 NHS article warns. I would certainly agree that the monitoring of these prescription drugs should be increased, and feel that in my case, my usage and changes in my condition were not monitored at all, once again, most likely due to my age; this inevitably led to some of my current health issues.

A cautionary tale for prescription opioid users

A couple of years ago, I found that I wasn’t managing my pain issues, and rather than just experiencing pain in the areas of my body where osteoarthritis is present, I was experiencing it all over my body – sharp, burning, shooting pains down my arms, back and neck, my whole body felt very heavy and achy, and I felt exhausted all the time, so it felt not dissimilar to a nasty bout of never-ending flu. My GP told me to increase my daily dose of opioids – at the time I was taking 25% of my daily ‘allowance’, so was advised to increase as necessary to a maximum of 240mg of codeine daily. The pain was not reduced, it actually increased. My GP then checked for Vitamin D deficiency; I tested as ridiculously low, so she concluded that the pain was caused by that and blasted me with Vitamin D for a couple of months. The pain didn’t go away, and my mobility began to slowly decrease, so I was then referred to the Pain Clinic to seek other possible explanations. They concluded that I did not have M.E, but it was possible that I could be experiencing Fibromyalgia alongside Chronic Fatigue; they also said that they couldn’t treat me further until my depression was under control, so recommended that I went back to my GP. I didn’t, and struggled on for about another 6 months.

One dark winter morning, I was getting ready for work, the pain was awful and I was struggling to get dressed and sorted; my head was confused and messy because I had been taking the maximum codeine dose for several months, and couldn’t remember what medication I’d taken that morning. By the time I got to work, I felt quite ill, very nauseous, dizzy and confused, and somehow figured out that I (like so many other opioid users) had accidentally overdosed, so ended up having to go home again to sleep it off. That night I snapped – what was the point of taking all these potentially dodgy meds if I was still in pain all the time? How were they actually helping me? The answer I came up with was f*ck it! There is absolutely no point in doing this anymore, I’m so totally bombed out all the time and don’t even know what I’m doing. I’m NOT going to take any more opioids! Although in some ways, this was an easy decision to make – ie. what have I got to lose? how much worse can it possibly get?! – I had no idea how I would cope or what would happen. When I first started taking co-codamol, it was such a relief as the warm, tingling soothing sensation slowly spread down my body and took the pain away. That was a long time ago, and sadly, the longer you take opioids the less of that lovely sensation you experience, and the more dependent on it you become; to experience previous levels of pain relief, you need to continually up your dose. It had been a long time, several years, since I felt any obvious benefits or optimism about taking opioids for pain relief, and I had become increasingly concerned that I could become addicted to it, which might explain why it didn’t work for me anymore.

Giving up Opioid Analgesics

The immediate aftermath of this decision to be opioid-free, however, took me by complete surprise. My initial expectation was that the pain would be absolutely unbearable and that I would experience at least some withdrawal symptoms. In reality, neither of those things happened.

The psychological impact was the most obvious and positive change. I felt much better psychologically than I had done for a long time, experiencing a massive surge in the levels of clarity in my thinking processes, more positive energy, and I felt more alert than I had done for several years. I was no longer living within an opioid fog which slowed by brain and dulled my senses.
My physical responses were more complex. For a few days, I actually experienced a lot less pain – the ‘mystery’ pain in my upper body disappeared completely, and I was left with only the anticipated arthritic pain in my lower body. Although unpleasant and difficult to manage, I saw this as a very positive step; what I was now able to feel and identify, for the first time in ages, was where the real pain and problems were, and my situation seemed a whole lot less disturbing than before, when I genuinely believed that my whole body was deteriorating rapidly and had something terribly wrong with it, which nobody seemed to be able to recognise or classify.
Pain levels were more intense and impacted significantly, and my levels of mobility deteriorated quickly since I was no longer taking any analgesics to manage the pain.

The good, the bad, and the downright ugly

I reached several inescapable conclusions about this experience by myself, and the rest after consulting with a GP (a different one, obviously).

ditching opioid analgesics resulted in a real improvement in my psychological well-being; I could think more clearly, experienced an increased level of confidence, and felt empowered to be more in control of my treatment and challenge any issues I had doubts about.
the immediate disappearance of the physical pain in my upper body was evidently caused by the codeine; apparently, I had developed an intolerance to opioids and the pain was my body’s response to that. Consequently, the suspected diagnosis of Fibromyalgia was also incorrect.
my development of an intolerance to opioids was the direct result of my usage and condition not being sufficiently monitored, and left me with a suspected diagnosis of Hyperalgesia, a condition where an individual has become oversensitive to opioids and is no longer able to use them for the purposes of pain relief. This raises a very real problem – what to use for pain relief instead? The options are very few, as pharmaceutical companies continue to flood the analgesic market with opioids. There is no cure for osteoarthritis, and as the degenerative condition increases, so does the pain.
further osteoarthritic degeneration had taken place – this was the real clanger, I had been experiencing so much pain all over my body that I had long since had any idea about what was going on. Once off the opioids, I realised that I had considerable stiffness and decreased mobility in my hips, and sure enough, the x-rays revealed that the arthritis had now spread into both hips and my lower spine, and I urgently needed a total hip replacement in my left hip. I was absolutely stunned at this latest revelation; Opioids make your body blind to pain, the pain of existing conditions, deterioration of existing conditions and new conditions, so it is entirely possible that existing osteoarthritic conditions can advance and spread without you knowing it, particularly if you’re totally bombed out on opioids.

In retrospect, there are clearly lessons to be learned on both sides of this nightmarish scenario. For myself, I need to stop stomping off in a huff, avoiding medical professionals and start pushing them to sort shit out as and when it happens. I have become increasingly angry over the many years of dealing with this, that it is always a case of alleviating symptoms (most often with open-ended prescriptions of opioids) rather than dealing with a root cause and working to halt that as much as possible, with further surgery if necessary. My age has always worked against me in the past, but I am now in my early fifties and therefore rapidly approaching the age bracket where arthritic conditions are a common cause of pain. Also, of course, as someone who has had four decades of problems with the condition, it seems that this is an obvious place to start when looking for clues about the source of pain. Last year’s x-rays revealing that the arthritis had spread shocked me completely; firstly, because (perhaps rather naively) I never expected it to spread beyond my knee, but also because it was accelerating at an unanticipated rate and surgery was unexpectedly and urgently needed.

As for opioids, I see little purpose in prescribing them long-term for someone such as myself. They blinded me and medical professionals to serious, additional joint deterioration which could and should have been identified sooner; they caused unnecessary extra pain because I had developed an intolerance to them, and I now have considerable difficulties managing my pain on a daily basis since so few effective non-opioid alternatives are available. Medical professionals also struggle with this situation – what analgesic medications can they now give me during and post-surgery for pain relief when their preferred drugs of choice are morphine and codeine, and there seems little else available from the pharmaceutical companies?

There continues to be much research into finding effective, non-opioid, analgesic alternatives, and this article is about the kappa opioid receptor. The aim is to develop a safe, non-addictive drug for pain relief, and although research is still in its early stages, there seems to be considerable optimism surrounding this research.