I’ve been thinking a lot about acceptance. I’ve held off writing this as I really hate coming from a doom and gloom standpoint and so wanted to be a bit more balanced (?!) before approaching this subject. It’s not very fair to you lot if I am sat unwashed and unmotivated, cramming chocolate into my cakehole while moping in my ‘jamas about just how terrible my life is, ha ha.
Over the last few weeks, I’ve had a lot of people advise me about acceptance and its role in coping with chronic illness/pain. Having had chronic pain for over 4 years now, I’m surprised that I’ve never come across this trend before – maybe my brain shut it out. ‘Trend’ is probably the wrong word, but you follow me. It seems commonly believed that the key to coping with chronic pain in particular is the acceptance of the hand we’ve been dealt. You’ll see the idea discussed a lot on web forums and Facebook pages related to chronic pain and specific conditions thereof. I’d be surprised if you could scroll through a page without it being mentioned at least once, but that alone is no judgement by me on the concept.
Now I’m a skeptical creature by nature, some might argue a bit cynical although they’d be wrong as if anything I tend to be a bit too optimistic and rose-tinted about life, which my family have a good laugh about. Many a time I’d be gutted as a child when my Dad would point out the obvious mistakes in movies, I always wanted to believe. I’ll admit that at first I read about this elusive acceptance and wrote it off as Dr. Phil/Oprah school of thought which I don’t much go in for (no offence intended to die hard Dr. Phil fans!). I can just see either of them telling Americans to “Just OWN your pain”. You know exactly what I mean so don’t pretend you don’t! Perhaps I just struggle with abstract notions such as “owning” – as soon as I think of it I wonder how much I could sell what I’m meant to “own” for on eBay.
There does seem to be some clout to this acceptance malarkey though – I found (among others) a 1997 study by Lance McCracken for the University of Chicago that suggests greater acceptance of pain leads to less depression, less disability and even lower intensity pain scores. Indeed many pain clinics are focusing their pain management programmes on aiding people to accept and therefore cope with their pain better. That said, the idea of accepting anything bad just seemed inherently alien to me, sure that would be giving up? Not so, say those who advocate it, acceptance is not about accepting defeat, but is about continuing to live life and be happy, instead of letting pain put life and happiness on hold. Well, once it was put that way it made a bit more sense although it did sound suspiciously like an end goal that was more of a pot of gold at the end of the rainbow than anything tangible. At this point I was convinced I’d turned into my Dad, looking for the strings in the special effects.
A little while ago, I got what I thought was an end to the search for a diagnosis and with this came a sense of relief – not at having CRPS, which I wouldn’t wish on anyone, but for an end to wondering and worrying why I was so unwell and losing my ability to walk, and what the future held. At the time a couple of doctors, independently of each other, suggested an operation which they felt could offer me substantial pain relief and even my legs back to normal. One even wrote to my pain consultant suggesting he referred me to the surgeon. Now this was an outcome I could accept, finally I could understand what I’d been advised about accepting my pain and getting on with life. I revisited the idea and decided, yes, I’d finally got there – things were going to be fine as I had ACCEPTANCE. At long last I could stop being a miserable git and start living life to the max – like I was finally living the old Bodyform adverts or something. I mean, come on, those girls could rollerskate in circles AND rock-climb and they only had an intimate disposable product on their side – can you imagine what they could do if they had ACCEPTANCE too?
On Saturday I had my pain clinic appointment. Now there was no negativity from the consultant, he was great, which was more than I was expecting from our first meeting after having moaned to him in a letter previously. However, I came out of there and broke down on the roll home. I moped for 48 hours solidly and completely ignored the good that came out of that appointment, like the place on the Pain Management Programme I’d wanted, and the go ahead to come off two drugs that have given me pretty significant side effects. What had me moping? All it took was the advice not to get my hopes up for the operation I was pinning my hopes on, and the advice that medicine wise there’s nothing left to try. There was also the knowledge that all they could do for the loss of sensation in a rather delicate area was offer me counselling to learn to, yes you’ve guessed it, accept my problems.
Now in hindsight it’s clear to me that my acceptance was a fair-weather friend – there while the future was looking rosier and *poof!* gone at the first sign of hurdles. It’s certainly true that while I thought I had that acceptance, I was coping with my pain better. However, accepting and embracing are two different concepts and my God I can embrace pain when I’m miserable, but I can’t accept it. I spent nearly two days positively relishing my higher levels of pain as it reinforced my miserable attitude that life was again, totally pants. Acceptance and I were on a break.
I can hear you thinking that I wasn’t going to be miserable and down in this post – well that’s the miserable bit over and I’m only being honest. I am not posting this for sympathy or for anyone else to give up trying to feel better. The last thing I want is for anyone to feel like I felt on Saturday afternoon, but I do wonder if it’s better to be prepared than to be blindsided by believing we’ve got there only to have it crumble? I haven’t given up the hope of accepting and managing to feel okay about things more regularly, and I’m going to keep posting back, honestly, about how that’s going. What I hope for out of this post is that anyone else struggling to accept their pain reads it and thinks to themselves that others are out there struggling to accept too, and that’s okay – hell maybe it’s even normal. There’s no point in us adding to the list of things we already beat ourselves up about by worrying we’ll be seen as pessimistic or revelling in being a victim, and perhaps, just perhaps, there are more practical ways to improve our situations at least in the short term while we get our heads round things or wait for a clearer picture of the future? Maybe acceptance will creep up on us when we least expect it. In the meantime maybe it’s just as good to accept that we don’t accept……yet?
Well – who got Easter eggs? No chocolate eggs for me this year, boo hiss. Hope you all had a great Easter.
Following my much anticipated trip to the neurosurgeon on Saturday (30th March), I have the relief of having been diagnosed with a pain disorder called Complex Regional Pain Syndrome, or CRPS for short. Relief? Yes relief – I have waited so long for an answer to why I have chronic pain. It’s not all in my head, I told you so! I’m sure the negativity will hit me soon, but then it’s not like I didn’t have the pain before Saturday! As CRPS, although not rare, is relatively unheard of, even by many doctors throughout the NHS, I wanted to share with you what I have found out about it so far. Bear with me on this one as I am new to it too! If anyone would like me to add to this or amend it, please let me know. I’ll include a list of links at the end if you’d like to read more. As a side note, I would also love to hear from other people with CRPS.
CRPS was previously known as Reflex Sympathetic Dystrophy (RSD) and historically labelled as causalgia (from the Greek words for heat and pain), Sudeck’s Dystrophy and Hand-Shoulder Syndrome. Not a lot is known about this condition, other than that it often arises after an injury or surgery (most commonly in a limb, but can start anywhere in the body) and causes a variety of symptoms, the main being chronic intractable neuropathic pain (such as burning sensations), often making the gentlest touch incredibly painful. Other common symptoms include skin, nail and hair changes in the area affected, differences in temperature/colour of the area, and swelling. Sufferers don’t necessarily have all of these symptoms, and commonly CRPS is progressive. The psychological result of the chronic day in day out pain and lack of sleep is often depression, understandably. There are many more symptoms that are associated with CRPS, but I won’t drag it out into a huge list (see links below for more info).
The important thing to mention is that early diagnosis and treatment is absolutely imperative – treatment within the first 3-6 months gives the best chance of recovery, with full recoveries after a longer term being very rare. CRPS is generally considered a lifelong illness in cases where patients have had long term chronic pain of 2 years+, although in these cases patients can go into remission either spontaneously or through various treatments. CRPS is most commonly treated with a multi-centred approach, often using drugs or epidural nerve blocks to target neuropathic pain, physiotherapy to aid movement in the effected area and psychotherapy to address psychological and social needs. This psychotherapy is believed to be very important in longer term cases where acceptance of chronic pain as part of life and pacing skills are considered crucial.
I found this video on a pain forum, which goes into the pathways of neuropathic chronic pain in decent layman’s terms – it’s really well worth watching, and not boring at all. While it doesn’t mention CRPS by name, that is what Chandler suffers from and the information is pertinent regardless.
I will post more in future about CRPS itself and how it effects people in the future, but in the meantime I think it’s really important to publicise this condition. Most of the charities and support for CRPS/RSD sufferers is US based and more frighteningly, there is very little knowledge of CRPS within the NHS itself. It is really important that the message gets out about it.
According to figures published in a May 2012 paper by the Royal College of Physicians, there are potentially 480,000 sufferer of CRPS in the UK alone, and in stark contrast only 20,000 have actually been diagnosed. Early diagnosis is crucial, as I mentioned before, so it’s important to get the word out.
I spoke to a gentleman on a pain forum recently who has been in touch with his local MP to ask for discussion on CRPS within parliament. His MP, Ian Stewart, is going to ask for a debate in parliament “after Easter”, and he is asking CRPS sufferers to contact their MP and ask them to get in touch with Mr. Stewart and support him – the more MPs that are aware beforehand, the more likely it is that parliament will sit up and listen. I’m going to beg you now to please write to your local MP (make sure they cover your constituency or they will not be able to help) and tell them about CRPS, send them some links from the list below, and tell them about the RCP numbers above. Ask them to support Ian Stewart in his call for a debate. I and many other people would very much appreciate the support!
In the meantime, if anyone finds a current UK based, CRPS-specific charity or support group, please let me know. I’ve been looking all week and can’t find any that are still active. I am very interested in gathering a bit of momentum for CRPS support and education in the UK.
More information on CRPS can be found at the links below: