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!
There’s bits of me all over the place. There’s plenty bits of you too. This post is about data protection and rights to personal information, and is a kind of natural progression from a previous 
in my crusade for personal medical information. I have experienced an unnecessarily protracted and frustrating hoop-jumping exercise before managing to get copies of some more recent x-rays from one hospital, and am in the throes of trying to access further x-rays from a different provider but so far have made zero progress with that. But hey, I am determined, stubborn and have plenty time at present so I will continue to request and nag and fill in however many forms they throw at me in order to get what I want. So yes, the Data Protection Act has helped in some respects with this; medical providers can no longer refuse outright to share that information with you, but it seems they are not obliged to make it a short or simple process.
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?
This image shows a healthy, normal hip joint, and if you have been diagnosed with arthritis in your hip(s), the clinician will have noted that rather than there being a nice healthy space in the ball-and-socket joint such as in this image, there will be a narrowing, or if you’re really unlucky, no space left at all and bone-on-bone contact. The arthritis in my left hip was discovered late, too late really, and was immediately classified as ‘severe’ so I’m afraid I haven’t seen any images of the gradual deterioration and intermediate phases which occur; however, what I have seen is an image of my hip from a few years earlier which has been incredibly useful for comparisons of ‘then’ and ‘now’. In my case, my hip changed from something similar to the image above, to something akin to the image below in approximately 5 years. Without wishing to alarm anyone or to incite some kind of arthritic hysteria, I can assure you that this is not the normal rate at which the disease progresses, and the majority of OA sufferers experience a much slower deterioration over a period of a decade or much longer before surgery becomes necessary. It appears that my OA is aggressive, and judging by the flustered responses of specialist clinicians to my test results, I suspect that it is unusual in its enthusiasm and pace. 
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.
that you rarely get the opportunity to see under normal circumstances. Then, there’s the bits and pieces of bone and tissue that they remove during surgery – who wouldn’t want to have a bit of that and store it in a jar? Well, ok, maybe the bone and tissue thing isn’t for everyone, but I suspect that most people feel some level of curiosity about clinical scans in their various shapes and forms. I certainly do. I love images in all their incredible guises, from fine art paintings to the humble x-ray; they’re often insanely beautiful, fascinating, inspiring things, and clinical images are simply incredible in the level of detail and information that they convey. I could stare at them for hours, and herein lies the problem.
Bare Bones 