A tantrum, some cold turkey, and an epiphany

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

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

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

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

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

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

The Yarn Whore

For the past six months, I’ve been knitting socks. I had heard from various reliable woolly sources that knitting socks was “very difficult” and it was necessary to juggle more than two needles at a time, so despite being an extremely obsessive and socks1 experienced knitter, I convinced myself that I wasn’t good enough, or lacked the necessary discipline, or wouldn’t have the patience to manage to make even the most humble of socks – or worse still, manage to end up with a single sock and not be able to persuade myself to make an actual pair.

I was first taught to knit by my mother when I was very young, I think I was about 4 years old, and I’ve always suspected that her intention was to give me something to do which would keep me quiet and distracted. I used to knit up balls of string, then when the ball came to an end, I’d unravel it and start again. My mother wasn’t a particularly talented knitter, she knew the basics of knit, purl, cast on and cast off, so as a child I was limited to making dishcloths as presents for grandparents. But there was something about the process which really appealed, something elusive and intangible. By the time I hit my teens, I dived fearlessly into designing and making jumpers – huge, baggy affairs which often went down to my knees, were too big across the shoulders and had sleeves which were too short; the jumpers available in the shops were truly hideous, clingy affairs so it seemed the perfect way to resolve that problem and improve my knitting skills as well. There was also some kind of knitting revival going on at the time, and for the first time ever, beautiful crazy yarns were available, including fluffy mohair in a range of sumptuous colours. I was hooked, and have knitted obsessively ever since.

Medically, there has been a lot of discussion about knitting and its mental health benefits, and most recently, there has been a lot of debate and consideration into the concept of Social Prescription, rather than the more traditional approach of sending you away with a few bottles of pills. Social Prescription is the idea of recommending an activity, preferably one with social interaction, to improve not only mental health issues but also physical health issues such as lowering blood pressure, etc. Social Prescription activities are many and varied, and could include knitting, fishing, walking, sewing, painting, pottery, or basically any creative activity which has the potential to distract from current or ongoing health issues and increase social interaction, and in the UK, GPs are being actively encouraged to prescribe, for example, knitting rather than more pills.

So what exactly is it about knitting which works for me? As a self-confessed Yarn Whore with an obsessive compulsion to click away, what is clear is that knitting is a multi-sensory experience. With the exception of taste, knitting brings a feel-good factor to all the other senses: visually, the yarn is beautiful both prior to and after knitting, and the range of colours and textures available now is incredible; the gentle clicking sound of the needles and the subtle smooth sound of yarn sliding off the needles is very calming; the textures of different yarns as they slide through your fingers are curious and varied, as is the way that the different yarns respond to the knitting process; and the different scents of the yarns reflect their various compositions and fibres, from the relatively strong smell of natural wool yarns to silks and cottons (yes, they all have a different scent!). But the sensory response to the process is arguably not what makes knitting a really positive activity to get in to. Yes, any creative process will benefit your mental well-being, but the knitting experience brings with it a rather hypnotic, meditative state which I haven’t experienced with other creative processes. When I knit, my body starts to physically move very slightly, responding to the movements of my hands and arms; in passing the yarn around the needles or when slipping stitches off the needles, my body begins to sway slightly, rhythmically, gently, my breathing follows these rhythms, and it is this range of movements which makes knitting such a meditative, relaxing process. Furthermore, most knitting demands some level of concentration (I’m thinking aran or socks here!) which forces you to focus, not get distracted, and so you will inevitably focus less on your health issues.

So, back to the decision to suddenly man-up and try to make socks. Actually, I bought my first-ever sock yarn last summer, deliberately prior to going into hospital for surgery – for some bizarre reason, I thought this would be an excellent idea. I took it with me, looked at it a few times, then wimped out and put it away again; it seemed that it was a really stupid idea to try to improve my existing skills by learning something new at such a time and was just too much to deal with. However, after a couple of weeks at home, when my physical symptoms were a bit easier to manage, I decided that I needed some serious distraction so started on the much-avoided sock challenge – and I loved it! I learnt to knit on five needles, began to understand why socks need to be knitted in a certain way, and had (very sensibly) bought some self-striping yarn so I wouldn’t get bored, and I have obsessively knitted socks ever since. I have written three different patterns so I can knit socks in different yarn weights, and as soon as I finish one pair I start another, I just can’t stop! What was most apparent in all this was the soothing, meditative effect of knitting on my body and my mind at this difficult time, and I would have really struggled to cope without the distraction of the knitting process alongside the satisfaction of making something beautiful.

I now have far too many socks and need a bigger sock drawer. I probably should give some away as gifts but they all feel special to me and I don’t really want to part with them, not yet anyway.

For more information about the benefits of knitting, click here

Mind over matter – the power of the depressive voice

painyinyan I no longer believe that I will ever get better. The possibility of this becoming my reality entered my mind a couple of years ago, but this the first time I’ve written it down and I guess that in doing so, it entails an ‘official acceptance’ of it in some way. I’m very aware of how potentially damaging this mindset can be, and am also conscious that this is the product of my ‘depressive voice’.

So what does this apparently simple statement actually mean, to me? It means that I fully expect to be in pain for the rest of my life; it means that no matter what procedures the surgeons perform, the arthritis will always be one step ahead of them and continue to spread to other parts of my body; it means that my mobility will continue to deteriorate and I will become increasingly dependent on other people; it means that I will continue to be potentially unemployable; it means that I will be increasingly marginalised and disenfranchised; it means that I will continue to withdraw from life and isolate myself. It means that despite all of the above being wholly unacceptable to me, the depressive voice has won.

There is general medical consensus that there is a link between chronic pain and depression. It’s hardly rocket science – my body hurts so I feel depressed. But this is depression we’re talking about here, a nasty bastard of a disease, an entire entity in itself, and managing it is a whole different ball game to feeling a bit fed up because part of your body is a little sore. Some medical opinions go further: individuals who experience chronic pain commonly experience anxiety and depression; anxiety and depression disorders in themselves can cause chronic pain; anti-inflammatory medications and opioid analgesics can cause additional pain; as the pain worsens, so does the depressive condition; and orthopaedic trauma, either through injury or surgery, triggers PTSD in 20%-51% of patients. A Canadian study from 2017 recognises this and is calling for a more holistic approach for orthopaedic patients by supporting their mental health both during and post-treatment, not only for the purposes of monitoring their well-being during a period of psychological distress, but also to facilitate a better recovery and improved outcome. In the UK however, the focus remains on degenerative bones and crumbling joints. Despite being asked to complete orthopaedic questionnaires which include a couple of ticky box questions about mental health and depression, no additional support or guidance on managing depression was forthcoming, so I can only assume this information was collected purely for statistical purposes. It remains abundantly clear that a more holistic approach is needed here, a human perspective if you like; I am more than my crumbly crappy skeleton, and my psychological issues over the past couple of years have impacted massively on my ability to manage both my physical condition and life in general. Below is an image depicting areas where I experienced pain yesterday, and rather interestingly, my arthritic problems are only present in my lower body; this is a fairly typical day, so I think it is only to be expected that my mood is currently very low.

It remains disturbing to me that the psychological impact of orthopaedic conditions is briefly acknowledged then so readily dismissed. I firmly believe that the power of the mind far exceeds that of the body, so it is both logical and absolutely vital that psychological issues be dealt with alongside the management of chronic pain. Recently I experienced several ‘meltdown days’, days when I could barely function due to the level of my depression. I found it curious that on one particular day, as the depression deepened, my levels of pain were reduced. I have no idea what other people experience when they have a depressive episode, but in my case it is a complete absence of thought – my head seems empty, it is a numb, dark, empty void, and I stare at blank walls for hours without any awareness of time or whether a single thought might have been created or processed. I see it as my brain going into emergency shutdown, a filtering mode in an attempt to protect me from myself, sifting out anything which might rattle me or upset me, leaving only what is necessary for my physiological survival. Perhaps on this particular day, my brain decided that the endless pain needed to be filtered out, even just for a short time?

As for the depressive voice, I need to find a way of getting it to work for me in a positive way, to help rather than hinder me, and to convince me that some level of recovery is possible, I want my mind to actually support me and be on my side for once. What I need from it are constructive thoughts and patterns of behaviour, some positive input to change my way of thinking and rid myself of the defeatism which consistently takes over my mind. As time goes on, more physical problems continue to emerge; the depressive voice needs to go, or I fear that I will never achieve anything more than a temporary superficial recovery and an increasingly self-imposed isolated existence.

“The feral pile”

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Dogs. I’ve owned them all my life and can’t even begin to imagine how desolate I would feel without one. Owning dogs, or spending time with them, has been scientifically proven time and again to have huge benefits for your physical well-being and an even greater impact on your mental health. So how and why does spending time with dogs (or other furry companions) improve your overall health?

Companionship

Dogs are especially loyal and loving creatures, so offer their owners comfort, reassurance, companionship, emotional and physical security, and unconditional love.

Responsibility and Motivation

Owning a dog brings with it responsibility and motivation – the responsibility for feeding and caring for your pet, and the motivation to exercise it regularly and sufficiently. In fulfilling these responsibilities, you should notice some improvements in your physical and mental health, even if the changes are small at first.

Depression

Walking a dog can increase your physical level of fitness, but also give your mood a boost. Here’s why:

walking releases endorphins, which reduce physical pain and improve your mood.
walking has a calming effect – it can reduce adrenaline levels which, in turn, lessen levels of anxiety and stress.
walking increases levels of seratonin, the ‘happy chemical’ or mood elevator.
walking enables more efficient use of dopamine, a neurotransmitter which signals responses of pleasure and motivational reward.
walking increases your levels of Vitamin D3, which is absorbed directly from the sun; this enables increased seratonin and dopamine release to the brain, and subsequently can elevate a low mood.
walking increases oxygen levels in the body and brain, enabling dopamine receptors to function more efficiently and lift a low mood.

Click here for an article about the benefits of walking and mental health.

Socialising

Walking dogs inevitably leads to meeting other dog owners, and sometimes chatting – usually about dogs! – and occasionally these chance encounters can lead to lasting friendships. Social isolation can be a key ingredient of depression, and it is believed that people who are socially connected are more likely to be mentally healthy. Socialising with other dogs is also good for your canine companion – dogs need doggie friends too!

Click here for a wonderful article, How getting a dog saved my life

“The Feral Pile”

The Feral Pile is not a phrase that you will find in any study about human and canine relationships or behaviour, but it is the way which I describe the most important behavioural aspect to my relationships with my dogs, and why they are so important to me. I think the simplest way to describe it is ‘mutual bonding’ and the behaviours which bring that about. The picture at the top of this post is of my current dog, a golden labrador, who was 5 months old at the time. She had had an unpromising start to her life, and this picture was taken the day I brought her home; she was clearly needy, anxious, in desperate need of reassurance, and we spent our first week together snuggled up in a feral pile on the sofa. She is now a strapping 3-year-old who weighs in at 30 kilos, but we have continued our tradition of spending several hours each day in the feral pile together; she loves the reassurance and attention, and I love everything about it: her scent, her soft velvet fur, her warmth, her rhythmic breathing, even her snoring in my ear, her reassurance, her devotion, and her beautifully gentle personality. Being in the feral pile immediately reduces my levels of stress and I feel much more relaxed, the warmth and softness of snuggling up to her relaxes my muscles and my physical pain seems less, and her gentle breathing has a soporific effect usually resulting in the best quality sleep I’m likely to have that day. Every day, I smile at her behaviour or her expressions and she lifts my mood considerably, which is hugely important since my mental health has been poor for a while now. Yet, despite the obvious mismatch of having a large energetic dog alongside my current mobility problems, she brings with her enormous reassurance, affection and a whole host of other intangible, wonderful things which far outweigh the challenges. If we can’t manage to do something or if it all gets too messy, we stay calm and simply revert to the feral pile until all is well again, and then we try again another day.

Osteoarthritis and Mental Health

This post is a continuation of the static post which can be found on the Mental Health page where I was undertaking an experiment to examine the potential relationship between arthritis and psychological well-being, using a word cloud programme to create an image using text. A week has now gone by, I have recorded 12 words or phrases each day relating to the question ‘How do I feel today?’, and this is the resulting image:

wordle-wk1-generic

This image is what I would describe as a ‘generic’ image to reveal the symptoms and emotions I have experienced over the past week. Word cloud programmes, by default, recognise text as individual words rather than as a complete phrase, and the larger the text, the more frequently a specific word appeared in my lists – for example, the largest words, such as ‘pain’, ‘back’, ‘stiff’, ‘sore’, etc appeared in my list several times, and in various combinations or phrases. Conversely, the smallest words appeared once only. This is all well and good, and provides an overall generic view of what I was trying to capture by doing this experiment. Evidently, the physical symptoms of my arthritic condition dominate in this image, but it is also interesting that several words relating to mood appear in moderately-sized text.

In this second image, I have tweaked the word cloud programme so that phrases are ‘read’ by the programme as complete words – in other words, ‘lower back pain’ will be read as one complete word. This provides a much more specific image:

wordle-wk1-specific

Interestingly, the words ‘low mood’, ‘sore back’ and ‘cold’ are now the most frequently occurring words and therefore appear in the largest text. Although the word ‘pain’ no longer dominates the image, it occurs several times in medium and smaller text, but this time specifically relating to the type of pain I experienced: ‘back pain’, burning pain’, ‘hip pain’, ‘sharp pain’, etc. What this image also reveals is the extent to which symptoms of low mood and depression appear and how they seem to be as prevalent an issue as the physical symptoms themselves. Additionally, I believe that these images provide a valuable insight into how exhausting it is, both physically and mentally, to experience an arthritic condition.

A couple of additional thoughts relating to this experiment and the resulting images.

Firstly, at the time of writing, it is a typically cold and damp January, and as arthritis sufferers are well aware, this is the absolutely worst time of year for us regarding our experiences of pain and is also the most problematic with regard to managing our pain and symptoms adequately.

Secondly, although I am firmly of the belief that osteoarthritis and reduced levels of mental well-being are intrinsically connected, I would also argue that low mood and symptoms of depression cannot be solely attributed to arthritic conditions, and that there are many other factors at play in our lives which influence our moods and well-being. Having said that, however, I have been extremely pleased to discover that during my medical appointments over the past couple of years, arthritis sufferers are now routinely asked to complete mental health questionnaires. I am assuming that this is an extremely positive step forward in better managing arthritic diseases – after all, how can individuals experience chronic pain on a regular basis, without also experiencing low mood and symptoms of depression?