Today was quiet on the medical front; with it being the weekend, there were no ward rounds or doctor visits, no tests or results to discuss. I was glad of the break and looking forward to a visit from my aunt, who travelled from Newark by train (through the snow!), to visit me. Because she was travelling so far, the ward were kind enough to let her have an extended stay, outside of the visiting hours, and so we had plenty of time to catch up. She also helped me think about the complaint that I needed to make about my previous care, but more about that another time.
Before my Aunt arrived though, I did have one other important visit: from a member of the hospital’s Pain Management Team and that is what I’d like to focus on with this post.
Useful Link: http://paintoolkit.org/
Firstly, a bit of background information. Having dealt with some form of inflammatory rheumatic illness since the age of three (with diagnoses of Reactive Arthritis, Dermatomyositis and finally Still’s Disease), I have also had to deal with pain pretty much constantly throughout my life, even during the times of remission and better disease control. However, for various reasons, I am very wary about strong pain medication and try to keep this at a minimal level. Obviously, I never let myself suffer in the extreme but I do ‘prefer’ to have some sense of what level of pain I have at any time, so that I can use this to judge what I am capable of. Pain happens for a reason; it’s a warning signal and a defense mechanism. I worry that totally blocking this out has the potential to lull us into a false sense of security, meaning we may push our bodies more than they can handle or simply not realise the extent of an underlying flare. Doing so can start a pain cycle that is very difficult to get out of.
There are other factors that influence my own feelings towards strong pain medication but I don’t think they are significant here. Hopefully, this is enough to explain the hesitance / stubborness that may come across in related posts, because I know that many people disagree with my approach and that it doesn’t always work in my favour!
Before this recent hospital stay, my main pain relief came from taking Tramadol and Paracetamol, which didn’t take the edge off things enough, but the only other option that had been suggested to me were Butrans patches (Buprenorphine), which seemed a huge jump to me, plus I’d had a bad experience with a similar drug many years ago. On being admitted to hospital, I had been prescribed a drug called Zomorph, which is a prolonged release Morphine capsule that you take every 12hours to maintain a steadyish level of pain relief throughout the day and night. For any ‘break through’ pain you experience, you can take a liquid form of Morphine called Oramorph, and in my case this could be given on request / hourly. They take into consideration how much Oramoprh you are taking on top of the Zomorph and adjust the Zomorph dose accordingly, until (in theory) you find the right dose to control your pain.
My main problem was that the Zomorph was wearing off by morning and, because I was asleep, I wasn’t asking for the ‘break through’ Oramorph as required, which is why I was waking up in agony and it was taking numerous doses to get things under control again. The lady from the pain clinic came to talk to me about such issues and to give me some guidance with other ways of managing my pain, since she had been told I was reluctant to try stronger medication. We had a really good chat and I found it very useful; some of the ideas are simple, common sense even; some I knew of already but they had slipped to the corners of my mind or I’d simply lost my motivation to carry them out. She gave me a useful booklet with all the information in and I’ve posted a link to the website at the top of this post and in my Useful Links, but I thought I share some other thoughts too.
The most important thing to remember is that pain needs to be managed and this includes (but isn’t limited to) finding the right pain medication for the individual. For many of us, it can be a balancing act between reducing pain enough to function physically and holding back on pain relief to ensure we function mentally too. This balance is entirely individual to each and every one of us and probably comes down to a bit of trial and error, until we find what level allows us to best experience our daily lives. There will also be times when flareups or acute pain means we need more pain relief than usual and so this is something that should be constantly monitored and reassessed. A pain diary can come in very handy and helps to keep track of pain, triggers, levels / doses of pain medication and its effects, especially on mental function, drowsiness etc…
Next comes Acceptance, which is a lot easier to suggest than to understand and actually do, plus it is not going to happen overnight. I have accepted that I will always have pain and that I need to manage this on a daily basis. But this doesn’t mean that, when I’m crippled with such pain, it doesn’t affect me or that it still doesn’t surprise me at times. This recent hip pain, for instance, has been totally out of proportion to anything else I’ve experienced and that scared me. I guess I’m having to deal with the Acceptance part all over again and maybe it is the same for all of us, a continous re-acceptance of pain as it changes and progresses. Once you do accept it, then you can start to find ways of managing it to suit you and hopefully one day this management will fit in around your life, rather than your life fitting around the pain.
The above link has separate entries for the following ‘tools’ but I’m going to bundle them together. Once you accept that you have to manage pain on a daily basis then you realise that there are some changes that you need to make and these include: Learning to Pace Yourself, to Prioritise tasks and to set Goals. Most of us have probably heard of the Spoon Theory, which talks about working around the fatigue associated with chronic illness, well pain is pretty similar. Pain is very limiting, plus you can do yourself further damage by not listening to your body and doing too much, so prioritise your tasks for the day / week and space them out with times of rest and lesser tasks. Trying to do everything on one day will probably mean that you won’t be able to do anything on following days – longer if you damage yourself – and that’s just going to add to your frustration.
Try not to focus on the mundane tasks too much, although it is important that you get bills and so forth sorted to prevent stress levels from rocketing! I find lists very handy and always have one important, construtive thing to do at the top of it each day; that way I don’t get bogged down trying to sort too many things out at once, whilst taking comfort in the knowledge that they will be done. It’s a great feeling ticking off that all-important task each day. Also, make time for pleasure and leisure where possible and be patient with yourself – if you think your pain is too bad to go ahead with plans, then cancel or postpone them and try not to feel guilty. This is one of the most difficult issues to deal with for me; I’m lucky that I have extremely understanding friends, who know I only cancel when things are really bad (although I’ve lost a few less patient ‘friends’ along the way), but it is still hard to do so, without feeling a let down both to yourself and others. But I guess that comes back round to acceptance again.
The next point is probably the one that I have realised I need to work on most: And that’s Gentle Exercise, Stretching and Keeping Fit. It is so, so tempting to over protect ourselves from the pain of moving, plus there are times when movement just isn’t recommendable or possible; the key is learning how to judge when and how much to exercise. I recently fell into the trap of not exercising enough, because I felt that I was in too much pain and was under the impression that if my joints were actively inflamed I shouldn’t put too much strain on them. (I think there is some truth in this, but I maybe took it too literally). Doing so means that you get caught in another pain cycle:
Existing pain means that you worry about exercising —> You stay away from exercising and moving painful joints —> Keeping joints immobile means that they stiffen up further —> It becomes increasingly difficult to move stiff joints —> Lack of mobility causes muscle wastage around joints —> Limbs become weak and fatigue easily —> You feel less like exercising.
If you get caught in this cycle, things are more than likely going to get worse; at the very least, they are not going to get any better. Exercising does not have to mean getting the tracksuit and trainers out, pushing yourself too hard and getting sore and breathless. Again, it is very much down to the individual and working with what you can manage at any one time, then building on this as you get stronger and/or taking a step back when things flare up again. I do think that we need some initial guidance from professionals though and that’s were Physiotherapy comes in handy, especially if you have particular joints troubling you. They can show the correct way to move such joints and give an idea of how much time you should spend doing so (per day and per session). I’ll try and expand on this in a future post.
There are things you can do at home too of course and it’s usually better to do a little rather than nothing at all. At the moment, my exercise regime consists of: Shoulder Setting, which I’ve found extremely important when using a zimmer frame or crutches; Regular short walks up and down the corridor on my zimmer throughout the day; flexing my lower joints through their current range to maintain this and attempting some supported weightbearing; simple upper body, muscle stretching exercises to retain the range of movement I have in my arms – although my shoulders and elbows are painful and restricted, they were only getting worse before I started these simple stretches and I didn’t want to lose the range I did have. I started with 5 repetitions each arm and can now manage 7-8, putting time aside to do so 3-4 times a day and taking 5-10 minutes each time.
As you can see, it doesn’t have to be much and you can build on everything according to your level of ability; the message is to do something. Since I feel that this is such an important issue for myself and for others, I will be posting more about specific exercises in future blog posts. I’ve also noted that the topic has been cropping up a lot in my article alerts and so will have some articles to share on the matter soon too. Watch this space!
Finally, the last point I want to address in Managing Pain is Relaxation, which is extremely important to your overall wellbeing too. Making time to do something restful that you enjoy is one way of doing this – over the years my hobbies have had to change from the physical to the more intellectual or creative, such as reading, drawing, cross stitch and keeping a blog. Relaxation can mean different things to everyone though; it could mean getting a nap during the day, listening to music, spending time learning how to meditate and relax your body, playing a round of golf, sitting in the garden for afternoon tea, taking a walk through the woods, or simply enjoying the sensation of the sunshine on your face when sitting next to a window. The list is absolutely endless and individual.
I also like to feel pampered… and men can benefit from a bit of pampering too, so no excuses! It would be nice to have money enough to pay for regular treatments, but soaking my hands / feet and moisturising them afterwards can feel as good as a professional manicure / pedicure, a gentle back rub or head massage can feel wonderful too, as can having someone washing, brushing or cutting your hair. Little luxuries go a long way in cheering me up as well: a spray of some nice perfume, a bright nail varnish, a fancy hair clip or nice piece of jewellery… I’m sure you all have your own personal ideas. I recently treated myself to a few new items of clothing and that gave me a huge emotional boost, despite all the pain I was experiencing. I do think it can benefit us, when we feel so grotty on the inside, to make an effort to feel good on the outside when we can, although I know this isn’t always possible.
So there you have it, pain management in a nutshell. I’ve loosely based it on the booklet linked above/below, which includes even more information, resources and ideas and is well worth a read; but mainly it is what I discussed with the lady from the Pain Management Team. If I find any other resources that might be useful, I’ll add them here at a later date.
I hope you find it useful,
Useful Resources: http://www.paintoolkit.org/