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Namaste, and all that…

rageyoga.jpg

A couple of weeks ago, I made the somewhat premature, and possibly ill-advised, decision to book myself onto a yoga class, and I have to admit that, all things considered, it was quite an odd thing to do taking into account that I am currently unable to even manage the most basic of asanas well.  I remain puzzled about what on earth was going through my mind at this particular point in time, but as with the majority of my ‘decisions’ of late, I had a fair level of reassurance that I would most likely bail at the last minute anyway – ‘unreliable’ has become my middle name over the past few years.  I’d even gone as far as to phone the teacher beforehand to warn her of my various physical limitations, perhaps in the hope that she would refuse her consent to me attending because I could turn out to be the biggest liability she’d ever had to deal with; however, no joy there either, and she suggested I came along to give it a whirl.  Meanwhile, my head was busy reassuring itself that I still had numerous reasons for not showing up: waking up and getting up on time is still quite a major achievement for me, swiftly followed by the level of pain and stiffness first thing, whether the pills kick in on time, and when they do whether I’ll be too wasted to do anything much at all.  And even if I managed all of the above, I would presumably have raging anxiety levels which would make it impossible for me to go somewhere I’d never been before and be surrounded by complete strangers.  So, I slept well that night, safe in the knowledge that I had numerous genuine reasons and lame excuses already in place, and assumed I simply wouldn’t manage it which would probably be the best outcome for all involved.

Yoga is interesting stuff, and I’ve practised it intermittently for many years.  I should, perhaps, add here that I’ve never felt the physical / psychological / spiritual/ transformational uplift which many yogis / yoginis apparently do experience, but in the past my relatively brief periods of doing yoga regularly have produced positive physical and psychological results.  I first tried it during late pregnancy, and found it helped with respiration, relaxation and flexibility.  I tried it again a few years later, having discovered that I would need to wait many years before my knee replacement surgery could be performed so to try to retain as much flexion within my leg as possible in the meantime, and then again a respectable period of time after surgery.  And finally, I drifted back into it a few years ago, during a more frantic search for some level of reassurance that my body wasn’t escalating wildly out of control, before having to admit that actually it was and I needed more surgery.  It seems that there has always been some benefit in my practising yoga on a regular basis, so why do I never stick at it?  If memory serves correctly, it is a combination of things – firstly, and perhaps inevitably, the changing levels of mobility and pain due to my arthritic condition; secondly, my psychological issues with depression and the accompanying lethargy, lack of motivation and decreased energy levels are hardly conducive to such practices; and finally, dare I say that perhaps it’s my personality which is at odds with it, my impatience and my lifelong inability to stick at anything for very long before flitting off and diving into my next fad?

Anyone who has ever tried yoga will probably tell you that it’s hard work – really bloody hard work.  Yes, it all looks very lovely and a bit freaky, but just because no-one ever leaves a class with a scarlet sweating face and gasping for breath doesn’t mean that it isn’t a major body work-out.  Again, this is what puzzled me about why I booked myself onto a class – surely, after all the aches and pains of the past few months, why would I want to put my body through something like this?!  I guess the answer lies in the fact that I am so totally sick of doctors, surgeons, hospitals, physios, and all things clinical.  I think the answer is that I realised that I needed to do more to get my body working better, to build more stamina, to strengthen core muscles etc but also that what I wanted was something which was interesting, nurturing, and was more holistic than the traditional post-surgery recuperation strategies.  One of the purposes of this blog has always been to consider a more humane perception of the physical and psychological impact of arthritic conditions and treatments, and how clinical approaches to recuperation are limited simply to physiological expertise rather than a more supportive and holistic approach.

So, did I actually get myself to the class?  Yes!  Much to my amazement, I did manage to get myself there, and have attended a further two since then, although it would be fair to say that one was far more suitable than the other.  I even managed to complete some of the asanas with varying degrees of success, and am now trying out various local classes to find something which works best for me at the present time and with my current physical limitations.  It’s tough and I feel absolutely battered for a couple of days afterwards, but I have learnt a lot about the current condition of my body and its limitations.  I have also learnt something rather curious about my psychological state of mind.  As often happens with me, my anticipation of how I will respond to any given circumstance or situation is not necessarily correct, and this is precisely what happened with the first yoga class; I expected to be too shy / nervous / anxious to attend, but actually the opposite happened.  As I have said previously, I don’t really do ‘anxiety’ or if I do it’s usually a specific situation, most often if I have to go somewhere I don’t know and where I don’t know anyone.  The first yoga class had all the elements I avoid like the plague whenever possible, however, I did manage this with relative ease, most likely because the state of my depression is, at present, in the “couldn’t care less about anything” phase; it was by exploiting this which enabled me to get there and do that thing.  I’ve figured that this is actually something really useful to be aware of, and if I genuinely don’t care, whatever happens or if something goes badly pear-shaped, it won’t bother me because it doesn’t actually matter.  It’s empowering, although for all the wrong reasons, but is progress of sorts I think.

My habitual hunt for interesting images today produced the pic above – yes, it’s unusual for a yoga photo, and thankfully, no effortless flexibility or smugness here.  The image in itself spoke volumes to me about my own shortcomings regarding yoga practice, but the article is also worth a read.  Rage Yoga, if you haven’t heard of it before, is the complete antithesis of the usual practice of yoga, and I’m both ashamed and possibly proud to say that maybe this is a type of yoga that I should consider and start tweaking my practice to accommodate a lot more swearing and regular beer breaks?

So, tomorrow I will be back again at my local, very calm and polite class – forcing my body to do stuff it really would rather not given the choice, channelling my anger and frustration into asanas, and trying not to swear out loud.  To any yogis and yoginis out there who might be reading this, “Namaste”.  And to anyone else who happens to practise Rage Yoga, “Namaste, Motherfu*kers!”

 

 

You are not alone!

aloneI 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!

 

 

“What did you learn during today’s session?”

Q: “So, what did you learn from today’s session?”

A: Nothing, absolutely nothing.  Zilch.  Nada.  Rien.  Nic.  An almighty nowt.  Sorry.

apathy

I really wish the answer was different.  I’ve been thinking about it for a few days now, and I have an official Homework Sheet where I am expected to share my newly gleaned & hopefully positive response(s), which is to be returned by tomorrow.  I can’t quite bring myself to answer truthfully so I am struggling to find an acceptable answer which isn’t a downright lie but also not something which might upset or insult the poor bastard who’s delivering this stuff.  I see absolutely no point in lying and consequently falling into the trap of people-pleasing, appearing receptive, optimistic, grateful even, but isn’t the whole point to be honest, both with myself and others, and hopefully this is how to pave the way for ‘progress’ of sorts?

Accessing Mental Health Services in the UK is a tricky and lengthy business, and I can only assume that funding (or the shameful lack of it) is the reason for this.  Demand is extremely high, at an educated guess I’d say that the need for Mental Health support is probably at epidemic levels these days, and yet it remains elusive, extremely difficult to access, and the process is protracted in the extreme.  I have been trying to access Mental Health support for many years now, and after recognising that I’m not coping and my issues aren’t just going to go away if I try ignore them, it has required a relentless and determined effort over the past three years to get this far.  I have just been accepted for a seven-week course of ‘group therapy’ relating to living with a Long Term Health Condition, and attended the first session last week.

I can only talk about my own experiences of trying to access NHS Mental Health Services, and have concluded that it is, like many other NHS services, a matter of jumping through hoops and hoping that you don’t get spat out somewhere along the way and find yourself back at the starting line again.  I have spent the past few years playing this very unentertaining game, and each time it has gone something like this.  It starts with seeing a GP, who expresses concern about, in my case, my relentless low mood.  We complete a questionnaire which concludes that I have severe depression, and I am advised to contact the local NHS provider for Mental Health Services.  They complete the same questionnaire with me over the phone, conclude that according to the questionnaire I have severe depression so they cannot offer me any support (the service is designed to support individuals with mild to moderate depression) so send me back to my GP.  My GP offers anti-depressants, which I refuse.  I explain my reasons for being unwilling to take anti-depressants and request some kind of talking therapy or CBT, but am told that these services can only be authorised by the Mental Health Service, who have just spat me out.  So I am cut loose and left to my own devices yet again until the next time.

During a more recent trip to my GP we discussed this problem yet again, and I was advised that in order to access these services, I would need to lie.  We figured that if I could produce a score which defined me as having mild or moderate depression, presumably I would then be able to access the Service.  The trick would be to score as highly as possible but try to get it within the range of ‘moderate depression’ without spilling over into ‘severe’, but try not to lie so much that the score came up as ‘mild’ since I would be treated as less of a priority than a ‘moderate’ score.  Bizarre stuff indeed.  In my own humble opinion, this was hardly the best starting point for accessing a service, but had to admit that it seemed to be the only way.  I dislike lying and deceit of any kind, I am not a good liar and find it hard to provide or maintain describing a situation which really isn’t true.  So, when the Service contacted me to complete the damned questionnaire yet again, I quickly decided that being brutally honest would be the best way forward.  I confessed to my conversation with my GP about lying in order to access the Service, my reasons for not wanting to do that, and also explained that I felt the scoring on the questionnaire didn’t take enough into consideration – for example, physical conditions.  I made clear that because I have a painful, long-term physical condition, this hugely impacts on what I am able to do or any activities which I choose to do, and at that time I would most often choose to do nothing, not because of my mental health but because it was either too painful or physically impossible.  However, the scoring on the questionnaire would flag this level of inactivity and hermit-like existence as a symptom of depression rather than an issue relating to physical disability.  I also have a long-term and complex history of mental health issues, which were discussed during this phone call and, as usual, was flagged as being of concern – partly because of the duration of my problems, but also because previous interventions had not provided an acceptable outcome.  I also felt it important to mention that I did not agree with the outcome of the questionnaire, that it would most likely classify me as ‘severe’, and having experienced severe depression I am absolutely convinced that I am not experiencing that level at present, and have not experienced that for many years.  So, having got all that out of the way, we completed the questionnaire and, as anticipated, the score came up as ‘severe’.  However, the nurse I spoke to was amazing and did accept the ideas and concerns which I had put to her, and accepted that other factors were providing a distorted score – in fact, we were both very aware that if I did have severe depression, I wouldn’t have even been able to manage such a long and complex conversation with her.  So, rather than shoot myself in the foot again, it seemed that being honest had paid off and I was accepted into accessing the Service – huzzah!

A couple of weeks later, I received a letter inviting me to join a group therapy course aimed at supporting people with long-term health conditions.  The blurb sounded good, I was excited, but had to decline due to up-coming surgery but asked that I be put on the next course of this kind.  The course started last week, and I was excited – at last I’d managed to access the Service, had high hopes that it would be a beneficial thing to do, and was interested in meeting other people who were experiencing similar issues and hoping to exchange a few ideas about coping mechanisms.  The reality was that I found it disappointing, but perhaps this is always the case when you finally manage to access something which has previously been denied to you?

So, returning to the original question: “What did you learn in today’s session?”

  1. That the Mental Health provider need to urgently up their game regarding accessibility for individuals with physical health conditions.  The session was provided for 12 people in a small room.  Half of the room had four tables which were not used, except to provide a space for a small projector (which could have easily been place on one table, and the others moved out of the way or stacked in a corner to make more space for the attendees).  The other half of the room contained three rows of chairs, with four chairs in each row, with little space to manoeuvre between; roughly six of the attendees used walking aids (sticks, wheel walkers etc) and a few others had mobility issues, so a little elementary arithmetic will tell you that only four chairs had ease of access.  There was NO consideration taken regarding accessibility for people with mobility issues, which is ironic considering who the session was aimed at and that the provider had information regarding our various health issues and accessibility needs in advance.
  2. There were three staff members in the room – the main presenter, a student who assisted with the presentation, and another student who was observing.  Was this really necessary considering the space constraints?
  3. There was no opportunity provided to ‘meet’ other participants.  The main presenter, a CBT therapist, introduced himself and the students, and the rest of us sat in rows next to complete strangers for the duration of the session.  I only got to see the faces of the people sitting on either side of me, the backs of the heads of the people in the row in front, and I have absolutely no idea who was sitting behind me.  The presenter seemed a little disconcerted that everyone was reluctant to speak or contribute, but why would we considering that we were in a room full of strangers?  I totally get the ‘but people have depression and anxiety issues so wouldn’t want to introduce themselves in front of everyone’ argument, but in my previous life as a teacher, I am very aware that introductions and ice-breakers are really beneficial thing to do and create a positive ambiance in the room, which then facilitates a better learning environment.  Activities like this are priceless, and there are loads of options which even the shyest person can participate in.
  4. The ‘presenter’ had absolutely no idea how to provide an engaging presentation.  The content of the session was a Powerpoint presentation – the slides were dull, the content was obvious, and it all felt rather patronising.  It seemed to be a case of ‘stating the bloody obvious’.  There was certainly scope to add our own ideas and contributions but either no-one had much to say, or felt too intimidated to speak.  Again, with my teacher’s head attached, there were a couple of opportunities to get us to do some of the work, maybe working in pairs or as a small group, or maybe scribbling ideas on post-it notes – instead of putting it all on a slide and read it out to us, why not ask us what we thought or felt or had experienced?  This would provide the added bonus of getting us to communicate with each other and breaking the ice a bit.  I wasn’t the only one who felt the presentation element was poor.  At the break, I did actually manage to speak to someone!  A nice lady who said she thought that the presentation was poor, as was the room layout – she had done presentations professionally too, so we had a bit of a winge about it between us.
  5. That the provider urgently needs more money!  The projector needed a new bulb – apparently their other projector did too.  Ours was producing a pink screen, so it was difficult to read the mundane content.  The other projector, somewhere else in the building, was producing blue light.  I thought this to be pretty embarrassing – to be unprepared in this way is bad enough, but for neither machine to be working correctly is pretty piss poor.  Also, of course, light and contrast of light with text is extremely important for many health conditions, not just eye complaints but for other conditions such as dyslexia too.  Again, no consideration for accessibility for participants.
  6. You provided a really sloppy presentation and set up.  In addition to all of the above, I should add that the projector (despite the surplus to requirements four tables) was shining on a wall and part way across the frame of a whiteboard – couldn’t it have been moved to be either on the wall or on the whiteboard, not somewhere vaguely in between where the text distorted?  or could you not manage to use the Smartboard which was on the other wall, which could have solved all the problems listed above?  Your two students would know how to use one, even if you don’t…

All this is curious stuff indeed.  I have heard many and varied tales about this particular provider, some good, some not so good, so I guess my first experience of them is in the ‘not so good’ category so far, which is a shame because there is no other NHS alternative and I don’t have the money to pay for private services.  Listing the above short-comings might seem petty, but the fact that there so many of them did contribute considerably to  my thoughts following the session, and clearly for several days afterwards; if I’m brutally honest, I really don’t want to go back for even one more session, let alone another six!  As with most things in life, if part of it is good or positive, it enables you to overlook the lesser quality stuff and, to some extent, major cock-ups too.  But having had poor presentation skills, poor room set-up, lack of accessibility, mundane patronising content, and even the damned projector light bulb being on its way out, I’m finding it hard to find anything good to say about it all.  I know for sure that if, as a teacher, I’d been observed doing a presentation like that and committing even one of the deadly sins listed above, I’d be out on my arse before lunchtime.  Ok, this guy isn’t a teacher, he’s a therapist, but clearly the ability to provide effective presentations has become part of his job, and therefore he really needs to up his game.  Accessibility isn’t rocket science, and requires nothing more than common sense, a bit of foresight, and some empathy – it costs nothing to set up a room for people with accessibility difficulties, just a few minutes of your time, and your audience will recognise this instantly and appreciate your efforts.

Apparently, this provider has been rolling out this course nationally across the UK, and it will be reviewed some time in the near future based on the opinions of the participants and the impact it has had on our lives.  In order to assess this with regard to quality, impact and the inevitable ‘value for money’, we will also being given questionnaires to complete each week so our responses can be assessed, analysed, etc and a decision will be made regarding whether the financial cost justifies the outcomes.  Right now, I’d say probably not, but then again, I may change my mind as the course progresses, if I can persuade myself to keep attending.

It’s a difficult one.  The accompanying blurb sounded very good, and it seemed that it might be a good option to try and a step in the right direction, but the reality is that this session was horribly disappointing, stress-inducing, and uncomfortable, physically and socially.  In the meantime, I guess I have to keep attending, I need to complete their paperwork each week, and try desperately to find something positive to say about it to keep the funding coming in, so that the service can be provided for others in the future.  However, I’m still stuck with my homework:

Q: “What did you learn in today’s session?”

A: That I really don’t want to come back here again.  Sorry.

 

Epiphany #2: the fragile self

scarsI 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…

hiarshirt2Historically, 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!

 

Bits Of Me All Over The Place

Security concept: Lock on digital screen, contrast, 3d renderThere’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 post I wrote describing my frustration and incredulity of being refused access to my medical x-rays.  Thankfully, recent changes in UK law have now made accessing personal information a legal right.  However, as I recently  discovered, a legal right of access does not automatically mean a simple seamless process.

The Data Protection Act of 2018 now grants the following rights to individuals regarding their personal information:

  • be informed about how your data is being used
  • access personal data
  • have incorrect data updated
  • have data erased
  • stop or restrict the processing of your data
  • data portability (allowing you to get and reuse your data for different services)
  • object to how your data is processed in certain circumstances

(Source: https://www.gov.uk/data-protection)

Obviously, the somewhat alarming reality in which we live is that there’s shitloads of data held about every single one of us in a seemingly infinite number of systems for a multitude of different purposes, and most of us are completely unaware of who is collecting and storing our data and for what purpose.  I imagine it would be an impossible task to locate all data held about us, and then tweak it to our personal permissions according to the above criteria of the new Act.  That is certainly not my purpose here.  My interest in the new Data Protection Act is that it now grants me access to personal medical information which was previously denied to me, so I have quite a task ahead of me in accessing and collating it all.

Over the past couple of months, I have made some progresspatient-record-keeping-clipart-1 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.

A few weeks ago, I decided to get the big guns out and request access to my medical records.  I wasn’t sure where to start, so asked my GP.   I received a positive and relatively encouraging response, so hoped the actual process would be equally smooth but apparently not.  The procedure at my surgery so far has been as follows:

  • ask GP if it is possible to have access to medical records
  • tell Reception I want to access my records
  • await telephone call from someone who instigates the process
  • complete telephone conversation, then go back to surgery to collect the Information Pack
  • read the Information Pack, complete the attached questionnaire and return document to surgery
  • surgery staff check questionnaire responses and screen my ‘suitability’ for access: ‘competence’, whether I am listed on any ‘at risk’ registers, whether accessing my records could have a detrimental effect on my physical or mental health, whether having access would put me in a situation where abuse could occur, (etc etc).  Should Safeguarding be identified as a result of sharing records, access can be denied for the protection of the patient.
  • if I survive the above screening process, I will be invited in for a face-to-face meeting with the Business Advisor to discuss the implications of access, and to have an ID check.  Then the Advisor will make a decision – apparently this could take several weeks, since no staff are allocated solely to dealing with requests for access.

Evidently, medical providers are nervous about unleashing information which has previously closely guarded and secure within their systems and buildings.  But what are they afraid of?  Is it that they don’t trust us to keep our own information confidential?  Is it that they see us as too ill-informed to understand the medical information recorded about us?  Is it more a fear that their professionalism and levels of knowledge and skills could somehow be seen to be diminished or undermined once Joe Public gets hold of his / her records?  Or perhaps it could be the fear of litigation resulting from poor judgement or error leading to legal proceedings?  Medical records have most certainly been fiercely guarded for as long as I can remember (and rightly so) thus reinforcing the kind of god-like status which some medics seem to acquire in the eyes of both their patients and their staff; enabling access to medical records could certainly burst a few bubbles.

But requesting access to your medical information shouldn’t necessarily be seen as a negative step.  Medical information about yourself can, and should, enable an individual to better understand their condition(s) and therefore better manage their symptoms, and I would expect that most people who request access to this data have good reason for doing so.  In my case, I want access to clarify something which I have wondered about for decades.  The first surgery on my left leg was performed when I was a child (I was around 9 or 10 years old) and I don’t honestly know what the procedure entailed.  At the time, I was told that I had torn a cartilage in my knee and had surgery to remove it.  I want to know the name of the procedure and what was actually done – was the raggedly cartilage removed and the rest left in place, or was the whole lot taken out?  If the latter is the case, then this could account for all the subsequent problems I have had with osteoarthritis over the years; if only the torn areas were simply trimmed away, there would be less reason to pinpoint the procedure as the reason for the aggressive osteoarthritis which I have developed since.  When questioned about the rapid pace of development of my arthritis, consultants deny or avoid the question of whether it is related to my historic knee injury, yet lower ranking medical professionals remain astonished that I have three joint replacements at my age, and two have been urgently needed and performed within the last 12 months.  My intention is not to apportion blame or start legal proceedings, it is simply to gain a greater understanding of what has happened with my body and why it seems to have gone so badly wrong.  The surgical  procedure performed when I was a child is the most obvious culprit and could have impacted on my on-going problems with arthritic deterioration in my joints and, perhaps most importantly, could indicate whether I have any other nasty surprises to look forward to in the near or more distant future.  Alternatively, it may have no bearing and my condition could have developed independently.  Until I know the name of that early procedure, I cannot even begin to consider the implications of it, if indeed there were any.  Accessing my records may or may not provide any answers to these questions, but I think they are the best source of information that I can hope for in my quest to better understand my condition.

 

 

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.  BruisesTomorrow 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-small07By 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 leftoafigure 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…

Hippie Stuff

This post is for those who may be considering having a Total Hip Replacement (THR) and to share my own experiences of that in the hope that it could be helpful to you.  I will also write about the similarities and differences between having hip or knee replacement surgery because I think it’s inevitable that I would compare the two.

healthy hipThis 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.  hiprplcmt

If you are an NHS patient in the UK and your x-ray result is of concern, you will most likely be referred to a MusculoSkeletal specialist, who is the stepping stone to getting a referral to a consultant-surgeon.  I was annoyed at recently having to go through this process (having managed to be referred directly to a surgeon only the year before) but actually the MSK specialist I saw was amazing – incredibly thorough and helpful in her diagnosis and subsequent medical report.  One of the tests which she undertook was called FABER (an acronym for Flexion, Abduction and External Rotation), which the above source describes as “a passive screening tool for musculoskeletal pathologies, such as hip, lumbar spine, or sacroiliac joint dysfunction, or an iliopsoas spasm.”  Put simply, a ‘positive’ FABER result means that you have musculo-skeletal problems within one or more of those regions  – it’s all about measurements of movement, in my case the test clarified that I had only 90 degree flexion and no medial or lateral rotation.  If you are experiencing pain and suspect that your hip could be the problem, the Oxford Hip Score test may be a useful tool to try at home; I only discovered this very recently and have never been asked to complete it at any orthopaedic appointments, so I am not sure how valid the professionals consider it to be.  Obviously, the problem with such tests is that all responses are entirely subjective, so it’s best to be brutally honest with yourself about your difficulties and levels of pain.  But it is something which you can complete in a few minutes, and I think it could be helpful in either alleviating your fears or confirming that perhaps you should make an appointment to get your hip(s) checked out.

So what exactly is a hip replacement?

Click this link for an NHS video about hip replacement surgery.

And what about the patient perspective?

One of the purposes of this blog is to look at my own experiences of osteoarthritis and the surgery which this has so far entailed, yet something I find extremely irritating is that the focus seems to be placed solely on my physical condition – identifying where the physical problems are, the condition of my joints, is there any cartilage? etc.  I always feel cheated somehow that the ‘human perspective’ is at best overlooked, and at worst completely ignored.  So, listed below is information relating to my own experiences of these procedures, as a UK NHS patient.

Do I have a choice of surgeon and where the surgery will take place?

Yes.  You should receive a letter which gives you online access to book a consultant appointment with the care provider of your choosing.

NHS or private care providers?

Although I am an NHS patient, both my procedures have been undertaken at private hospitals.  If you are an NHS patient, no additional cost is incurred.  I can only assume that the demand for joint replacements is so high that the NHS can neither meet the demand nor have the number of necessary beds available.

How long will I be in hospital for?

You will be discharged asap after your procedure.  You will be encouraged to mobilise asap, prove that your new joint is weight-bearing, that you can walk with sticks, manage stairs, have some level of mobility no matter how minimal, and that you can manage toileting needs before you can be discharged.  The discharge rate for hip replacements is fast – for my procedure last year, I was in hospital for around 36 hours.  Knee replacements are more complex so your hospital stay could be longer – I was in hospital for 4 days for mine, but this was almost a decade ago so this could now have changed.

What about physio?

I was given a sheet of exercises, to be completed 4 or 5 times a day.  The more you practise these exercises, the better the final outcome of your procedure.  However, I really struggled with this, the pain was too great due to problems elsewhere within my leg, and after about a month of trying then being nagged or told off because I’d failed again, I felt very depressed about it all and just gave up.  Even if you can’t manage the physio exercises, it’s important to keep moving and NOT give in to the massive temptation to bomb out on opioids, lounge around watching TV and eating mountains of chocolate during the long slow weeks that follow surgery.  Although I failed gloriously at managing my hip physio exercises, I did try to keep as mobile as possible doing other really basic ‘activities’, such as extremely short-in-distance-but-took-an-absolute-age dog walks, short trips to local shops, practising walking up and down the stairs.  The more mobile you are, the quicker you will heal and the better the final outcome.  Curiously, I managed the physio much better following my knee replacement – I worked really hard at it, like a really crazy obsessed person and finally achieved an excellent outcome.  If you can manage it, the effort really does pay off.

What about driving?

You will not be allowed to drive for about 6 weeks after surgery.  Both knee and hip replacement surgeries render your limb too weak to be able to drive safely at this time, and (I think) that your driving insurance is invalid during this period.  You will need to find yourself a willing driver to help you with this stuff, and also the joys of getting in and out of a car…

Managing transport / travelling

After both my procedures, understandably, my world shrank.  For the initial few weeks, my mobility was extremely limited, I was unstable on my legs, extremely tired, and felt very vulnerable so I only ventured out of the house as an absolute necessity.  After my knee surgery, when I was legally allowed to drive again, I bought an automatic car in the hopes that it would make things easier, which it did to some extent; what I didn’t foresee, were the problems I would have actually getting in and out of any car – the car door had to be wide open, and because of the swelling and limited flexion in my knee, I had to kind of slide myself into the seat after putting my surgery leg in first.  If you have a Blue Badge and therefore are able to use allocated Disabled parking spaces, this makes life much easier simply because you have the space to open the door fully.  Following my hip procedure, travelling was far more difficult, but for a very different reason.  Getting in and out of the car was easier than it had been after knee surgery, but I found it extremely painful when the car was moving; I assume that g-force is to blame, and this meant that not only was I very aware of how fragile my body was during these first few weeks, but also it felt as if my whole body was being rattled around in a liquidiser when the car was moving – every turn or bump in the road feels extremely painful and it’s  stressful stuff.  Although this improves slowly alongside your body healing, it still takes time before it is more manageable, and with me, I think it was around 3 months later that I could cope with it without wanting to cry.  As for public transport, there was no amount of money you could pay me to use buses or trains at this time.

How independent will I be?

Not especially, for the first few weeks.  When you are discharged from hospital, you will probably have minimal mobility; shuffling around nice wide hospital corridors and user-friendly staircases to prove you are sufficiently mobile is not the same as being at home, and you will need on-going support from family or friends to ensure that you are safe, don’t fall and can manage personal care needs.  My main problem both times were stairs and steps – I was surprised to find that my low doorstep was just a bit too high to step over, and the stairs were much steeper than I remembered.  Again, knee and hip surgery bring with them different issues – I fell several times at home after my knee procedure, but didn’t fall at all after hip surgery.  Personal care issues such as getting dressed can be difficult, and following hip surgery you should not bend more than 90 degrees for the first few months – it’s an interesting exercise to try this out before surgery, so you will realise how much you will need to adapt your movements to manage everyday tasks independently.  You will probably also need help in managing your medication; there will be a lot of it at first and it’s strong stuff, it’s a good idea to take it as advised, and also get help from someone to make sure you write down what you have taken and when.  The hospital provided me with a few day’s worth of meds, so it’s also a good idea to get organised and have sufficient medication to come home to after you have been discharged; I, rather foolishly, didn’t think about this, so had to spend several hours one day shortly after being discharged, trying to get hold of some more morphine because the hospital only gave me enough for the first 3 days.

The worst day?

The worst time for pain and stiffness depends on which procedure you have.  For hip surgery it is definitely the day after you have been discharged.  I’m not sure why this is – perhaps the realisation that you are no longer in the safe and protective atmosphere of the hospital, perhaps because all those strong meds they gave you during surgery have worn off, or perhaps that’s just because that’s how it is?  After waking from hip surgery, I felt sore but ok and this feeling of “Phew!  that wasn’t as bad as I expected!” lasted the next day too, the day that I was discharged.  However, the first morning I woke up at home was definitely the worst day, and I felt absolutely battered.  Hospital staff are aware of this and it is acknowledged that most people really struggle during their first full day at home.  For knee surgery, it was different – the worst day was immediately upon waking from surgery, I’d never experienced such pain before, I didn’t know what to do or how to cope with it, and even though I was still in hospital and on very strong painkillers I just found it so hard to deal with.  This was almost a decade ago, and I would expect that things would be different now and much improved.

Hip replacement vs knee replacement

The general consensus of opinion is that hip replacements are a much easier ride than knee replacements, and this is something I would wholeheartedly agree with.  The hip surgery seems a simpler procedure, the immediate pain I experienced was much less than with my knee replacement, I mobilised quicker, and was able to do more things independently sooner than after my knee surgery.  Knee replacement surgery was (at the time I had mine) a notoriously difficult and painful procedure.  I had never experienced any pain like it or since, but I would assume that practices are now much improved since it was around a decade ago.  Also, the knee replacement I had was an unusual one (lateral partial) which is apparently a more complex and challenging surgical procedure than the other partials and full replacements, so it could be that the relative rarity of my surgery could account for the difficulties I experienced.  Post-surgery knee pain is very specific and localised, it starts immediately after surgery and is more intense than hip surgery pain, but it slowly eases off over a period of weeks or months.  I think some of the problems I experienced with the knee surgery was that I wasn’t sufficiently informed about the procedure, recuperation time and levels of pain so I was a bit shocked by how difficult it was to manage.

What about mental health and orthopaedic surgery?

Orthopaedic surgery is statistically notorious for issues relating to trauma, not simply the physical trauma which your body experiences, but also for psychological ‘trauma’ which can occur with surgery.  This should come as no surprise to anyone since many people with on-going chronic pain also experience poor mental health and depression, so how would anyone expect us to respond when invasive surgery is performed?  For some reason, and I have no idea why this should be, but I do experience some kind of psychological issue with this type of surgery.  I feel quite ashamed of myself and I don’t understand what is going on here within my head about this – after all, my knee replacement was long-awaited and much needed, my hip replacement was also essential, both procedures were intended to improve the quality of my life, both physically and psychologically, so what’s not to like?  What is there to get psychologically messed up about?  This is clearly a big topic for me, I think it best to save it for a separate post.

Scars

The scars are pretty minimal if you consider what the surgery entails.  My knee scar is around 5″ long, and my hip scar is around 10″.  They are quite neat, and they do fade with time.

Is it all worth it?

In my case, the answer to this is absolutely YES!  Without these surgeries, my quality of life would have been very low, and I would most likely be unable to walk by now if I hadn’t had joint replacements.  However, they are not like a normal healthy joint and can feel a bit clunky at times, but hey, this is your life and mobility we’re talking about here and if you want any semblance to a normal healthy life, this is the route to take.  I would also cautiously add that if you are asking yourself whether to bother having a joint replaced, it is probably too soon to make that decision – put bluntly, if you are struggling to mobilise and the pain is bad enough, you would not even be asking the question, you’d be begging to have the surgery.  I would also advise that if you are at all unsure, that you get on the conveyor belt for an MSK appointment asap; NHS waiting times are long in the UK and it can take a while before you get a consultant appointment, unless you are an urgent case.  A consultant appointment is simply that – you get the chance to discuss your x-rays, you will be examined for mobility and pain issues and advised accordingly, and the decision to take things further or not is entirely up to you.