You are not alone!

alone I don’t know about anyone else, but I find the world to be an incessantly noisy place. And it isn’t just the usual suspects such as the internet, social media, mobile phones and generic media, but people too seem to have become extremely noisy over the past decade or so, almost like they are no longer capable of dealing with stillness or, worse still, silence. I really enjoy both stillness and silence, I enjoy being alone, I am entirely comfortable in my own space, and can easily spend long periods of time alone, quite comfortable in my own company, so much so that I actually prefer it a lot of the time. However, I am not immune to everything and there is one area of my life where I feel a desperate lack of interaction and a need for something to change.

One of the problems which I, and many others, experience as the result of having a long-term health condition is one of feeling alone, and I suspect that this feeling is common to many other problematic health issues; the feeling of isolation, the unfair assumption that those closest to us will probably have no idea how we really feel because we always try to make it sound less of a problem than it really is, and the realisation that no matter how sensible, logical and practical their responses and reassurances intended to counteract our negative mindsets may be, we can never quite accept what they are saying because it feels like they “just don’t get” the extent of the tedium and frustration of dealing with chronic conditions.

Feeling alone with a challenging health condition is an uncomfortable place to be, and in previous posts I have written briefly about this, and the reasons behind why I feel this way. The fact that, statistically, 8.75 million people in the UK sought treatment for osteoarthritis last year reveals how alarmingly common the condition actually is, and there will be many others who have either not sought medical help or are perhaps yet to realise that the source of their pain is actually an arthritic condition. So bearing these statistics in mind, how and why could I possibly feel a sense of isolation when, I am most likely surrounded by people with the same condition?

In the vast majority of cases, osteoarthritis is an age-related condition; put bluntly, the older you are, the more likely you are to develop it because as your body ages, your joints become worn and consequently osteoarthritis sets in. Anyone and everyone can develop the condition, and as we age most people will experience arthritic symptoms to a greater or lesser degree. That being said, herein lies my first problem regarding the isolation which the condition brings. I developed osteoarthritis in my mid-teens, and throughout the many years of dealing with it, I have not been surrounded by people who have any experience of the condition or have needed to have surgery. In fact, until very recently, I had never met anyone else even remotely around my age who had first hand experience of it. I would imagine that by the time most of us reach retirement age, a common topic of conversation is dealing with various aches and pains, some of which could be the result of arthritis developing in the joints, and I would anticipate that having even one friend who shares similar health issues to yourself can help not only with reassurance, but also reduce the levels of psychological isolation which can occur. Over the years, I have come to realise that I would really appreciate knowing someone else who has some personal knowledge and experience of the condition and/or surgery, and feel that this situation could have the potential to reduce the feeling of isolation which I experience on a regular basis, which is most often triggered by a symptom of the condition reappearing or suddenly becoming a new and noticeable problem.

More recently, this situation changed when, a couple of weeks ago, I was at the hospital for a physio appointment. This particular hospital is a private provider who relieve the NHS of the huge demand for joint replacements for NHS patients, a demand which the NHS cannot meet due to lack of funding, beds, staffing, etc. Although it is a small hospital, it is a significant local provider for many joint replacement surgical procedures, and as such, it would be fair to say that their average punter is in their golden years. In fact, during this particular visit, I was reminded of this before I’d even reached the building by overhearing an elderly couple in the car park saying “Oh yes, this is where Mavis got her shoulder done!” The Waiting Room is usually filled with patients of retirement age, but on this particular day there was a woman who looked about my age, and didn’t hesitate to introduce herself and talk to me, which was something which was extremely welcome for both of us I think. This rather lovely lady told me that she was in her mid-fifties and had just had a knee replacement. She was slim, intelligent, with an athletic physique, looked extremely fit and healthy, and was clearly as delighted as I was to find someone of a similar age in the Waiting Room, so it was impossible to resist chatting to one another; in fact, I would have loved to have had more time with her. Also, I have recently heard about a ‘friend of a friend’, who I don’t know personally, who had a knee replacement a couple of years ago. So, rather strangely, in recent weeks I have discovered that there are other people of my age around – I always knew there would be, it was just odd that I never came across them before. Rather disappointingly, my chat with the lady in the waiting room was very brief since we both got shuffled off into different areas for our respective appointments, and the ‘friend of a friend’ is just someone I hear about rather than have any contact with. But, the fact remains that these people are around, which makes me feel slightly less freaky, but I still have the isolation issue to deal with.

My other grouch relates to the widely acclaimed ‘success rates’ of these surgical procedures, which I have always found to be extremely unhelpful. It is invariably more difficult to be the voice of the supposed minority and openly disagree with something which is greatly lauded publicly by saying “I’m sorry, but that hasn’t been my experience of this.” As I have stated in previous posts, I greatly appreciate that these surgical procedures have resulted in my having improved mobility, less pain and a much improved quality of life, however, they are not a perfect solution and some problems do persist. Interestingly, I have also been told by medical professionals that there are more problems with this type of surgery with ‘younger’ patients, ‘younger’ being a term applied to anyone below around 60 years old; the issue which is most evident is that ‘younger’ patients experience more pain, simply because their nervous systems are ‘healthier’, being more sensitive and responsive than those in patients who are of the anticipated age for this type of surgery. More interesting still is the fact that the individuals mentioned above, who are both in their mid-fifties, are currently experiencing problems with their new joint. The lady who I spoke to in the hospital waiting room was experiencing oedema within her knee joint and had limited flexion which was a cause for concern some weeks post-surgery. She had also been informed that there are more problems undertaking these procedures with ‘younger patients’ and she, understandably, felt very disappointed with the current outcome of her surgery. The ‘friend of a friend’ is also experiencing difficulties some two years after surgery, is possibly experiencing nerve pain within the joint, and has recently been back to see the consultant again to try to resolve this. Rather ironically, and disappointingly perhaps, he had decided to go ahead with the surgery after hearing how successful his friend’s knee replacement procedure had been. What I do find interesting in the midst of all this is what happens when you start to voice your own concerns, niggles or even general dissatisfaction with the outcome, and it is certainly enlightening when people who previously claim that the procedure solved all and every problem start to consider whether this is really the case.

Knee replacement surgery in particular is notorious for being painful and a difficult procedure to perform; more to the point, the joint will NEVER function like a natural knee because it is beyond the capabilities of the mechanical joint to do so, so any claim that it is ‘as good as’ is frankly deluded. Knee replacement procedures are considered to be a success when the joint can be bent with ease to 90 degrees – any additional flexion is a bonus, but is not anticipated as a surgical outcome. Additionally, it is accepted by patients and professionals alike that it is extremely painful to kneel on a knee joint replacement – it feels not dissimilar to what you would expect from kneeling on knife blades, so is highly avoidable. However, as time goes on, the pain dissipates slowly, and I noticed that after about 6 years I could actually kneel on the joint again, presumably because the soft tissue had grown back and the joint was bedded in fully. Furthermore, some level of nerve damage is anticipated during most types of surgery – personally I have a couple of numb spots within my knee joint, presumably the result of very minor nerve damage, but this is not a problem to me. However, significant nerve damage can also occur, is extremely painful, is difficult to diagnose where the problem is coming from with much accuracy, and although steroid injections can help to ease this type of pain, they cannot be used where metalwork is present, and therefore are inappropriate for use within the same area as a joint replacement.

It’s complex and frustrating stuff indeed, and I would even dare to suggest that people who wax lyrical in wonderment at their new joint replacement are deluding themselves a little. I’ve had three joint replacements over the past decade, with vastly differing results. The first, a rare type of knee replacement, brought with it an extremely protracted recovery period alongside a host of relatively minor setbacks, before finally being what I would describe as ‘ok, but not brilliant’. The second, a hip replacement and therefore a much simpler joint, procedure and faster recovery period, was relatively straightforward, and ‘it’s pretty good’, is certainly a vast improvement on the knee experience and the joint itself is a whole lot more co-operative. And finally, the second hip replacement, which is ‘totally amazing’; yes, I’m slightly ashamed to say that I gush about this one because it’s been a transformative experience. Maybe I got lucky third time round, but I suspect it was more the case of it being on the side of my body which has less arthritic deterioration and greater muscular strength, and also that this surgery seems to have resolved a lot of pain and mobility issues by actually realigning my skeleton correctly, something which the previous surgeries failed to achieve. But in spite of all this, I remain aware that it is a mechanical joint and that is how it feels.

So, I guess it’s fair to say that I’ve experienced a range of outcomes from these procedures, and even the outcome of the most successful cannot honestly be compared to how my body felt before the onset of arthritis and joint deterioration. When I confessed to the nice-lady-in-the-waiting-room that sometimes I felt I could cheerfully punch people when they harped on about how bloody marvellous their new joint replacement was, I wasn’t joking. I fully expected her to end our conversation abruptly, disown me and sit elsewhere, but she didn’t, and really took me by surprise by quietly confessing that she felt exactly the same. So could it be the case that despite our apparently genteel outward appearances, lurking beneath lie two angry and aggressive women who just want to floor anyone who doesn’t share their own experience of this? Or is it more a case of feeling hugely frustrated with problematic surgical outcomes and the subsequent incumbent responses, which appear to be nothing more than a people-pleasing exercise which meets the required expectations regarding purported miraculous surgical procedures? Surely it would be more beneficial to patients and professionals alike to obtain honest feedback post-surgery, and dispense with the culture of guilt-tripping or challenging anyone who dares to suggest that these procedures cannot yet provide a perfect solution for everyone?

Certainly by talking with this lady and sharing our experiences reassured us both that we were neither hypochondriacs nor attention seekers, and that because we were below the anticipated age for this type of surgery, additional problems were likely to and did arise. However, what felt most important for myself was that I no longer felt I was floating about feeling isolated and a bit of a freak in all this. That sounds horribly selfish so perhaps I should try to clarify the relevance of all this: No, I’m not pleased that either she or the ‘friend of a friend’ have needed to have this type of surgery at a relatively young age, and I’m certainly not pleased to hear that they are both experiencing different problems as a result of those procedures. What I am pleased about is that I have finally met someone of a similar age who has experienced this herself, and that in itself is the much-needed evidence for me that I am not alone. And that, in itself, is massive!

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!

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?

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.

“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.