Am I bovvered?

7/20/2010 03:19:00 pm BenefitScroungingScum 12 Comments

I like the rain, the sounds, the scents, the sensations, I like all of it. My joints, now they're not so keen on the rain but you can't have everything. Although, living in the rainy North West it'd be nice if they could at least come to terms with it as a concept. Back home with hot chocolate to reward myself, though I know my joints are acutely painful, I can't actually feel the pain properly as I'm in such sensory overload from deathwalking in the rain. 

It was amazing out there, me and Joan wobbling our way across the sand, rain coming down too hard to see, soaking me through to the skin. It was so grey I couldn't tell where sea stopped and sky began or care that anyone might see me stumbling along, arms outstretched for balance, eyes closed just feeling the rain on my skin. 

Yesterday a twitter friend emailed to ask what I thought about pain management courses and specifically cognitive behavioural therapy (CBT). Late last night pain kept me sleepless and clock watching, to rise with scratchy eyes and leaden limbs aching with the rain that's been and is yet to come. Today on the beach, fat raindrops running down the back of my neck and trickling down across my collarbones, all I could feel was the kind of high drugs can help acheive but never truly create.

The knowledge that physical pain will be your constant companion throughout life, more initimately connected to your sense of being than any lover could ever be, well, that's a difficult thing to come to terms with for anyone, but especially so for teenagers and younger adults. Seeing decades stretch ahead of you, knowing full well there will never be any significant improvements in your health, can understandably seem too much for anyone to bear. I remember my inability to shake the unwelcome thoughts that if that was really how it was going to be then being dead might be the most desirable outcome. 

In the end, for me it wasn't a pain managment course, medication, surgery or any alternative therapy that ridded me of those unwelcome thoughts forever, but a moment of understanding. Watching a documentary about how pain is dealt with in societies without access to western medicine, a man with a sword pushed through his tongue as part of a ceremonial ritual was asked how it didn't hurt him. The man looked somewhat bewildered by the question as he explained that of course he could feel the pain, that of course it hurt him, but that he chose not to be bothered by it, that by consciously believing the pain was of no consequence whilst it wouldn't leave him be, he would be able to leave it be and get on with more important things. 

I figured I had nothing to lose, so I gave it a try. Concentrated fiercely on just one thought. "I know it's there, but it doesn't bother me." Over and over. And, much to my amazement, it worked. Only for a split second, but that second was long enough for me to realise I could in fact feel the pain coming from all the usual places in my body, but that it wasn't bothering me, it just was what it was. 

What sounds such a simple thing to do took weeks and months to perfect to the point it became second nature. Now I'm so used to it that as soon as I lose the background concentration I feel myself start to become distressed by how much pain I'm in, but instead of falling into that cycle of pain and stress I stop myself and focus on not being bothered by the pain for as long as it takes to really be not bothered. It's CBT in a simplistic but incredibly effective way that given enough time and patience anyone can learn to do. 

My experience of pain management courses was a frustrating one. I felt patronised and demeaned by medical professionals who had no experience of actually living with pain, but who were determined to tell me how best I should. The whole thing just wound me up to such an extent I ended up in more pain than before I'd started. CBT wasn't in fashion when I spent time on a pain management course but had it been I'm sure I would have dug my heels in even more stubbornly by being 'told' what to do by a pain free therapist! For some people the current model of doctors, nurses, physiotherapists and other allied health professionals delivering pain management courses will work well, but many find it as frustratingly inadequate as I did. 

Now I'm some years on from being diagnosed with Ehlers Danlos Syndrome and away from the constant distress of being disbelieved, knowledge and understanding of my condition, and how it affects my body are just as much help as my ability to change the way I perceive the pain it causes. The difficulty for many chronic pain patients is that they may never receive a formal diagnosis and it is significantly harder to know and understand a condition no-one can even name for you. Pain management courses and/or CBT will never be a cure for your pain, but if you have reached a place where you are ready to accept things as they are, the skills and information taught there can be invaluable tools for the future. 

Ultimately though, the only thing which can truly alter your experience of chronic pain is yourself and whether you're ready to do so. For some people that point will be reached sooner than others, it's not a situation you can artificially impose a timescale upon, but once it is reached it doesn't really matter where you learn CBT type skills from, you can learn them in whatever way suits you best.



It's partly good & partly bad that we accept our pain, good because we can concentrate on improving our lives, but bad because other people perceptions of us are changed by this. When you say "..but I am in pain ALL the time" and "healthies" just won't understand at all, and probably think you are nuts, including family, strangers and medical professionals! So they will treat you differently, and forget to think with a "disabled" brain because they don't see you writhing on the floor screaming in pain.

An example for me is when I go walking with my "healthie" man, he walks too fast and forgets I struggle with steps, slopes and uneven ground. I hold his hand for balance mainly, he forgets, and can send me almost falling over. Doctors could take one look at me & think I am fine, but I only ever make appts when I am able to go & see them. I think it's about time I let them see the pain. Sometimes you have to be bothered by it for other people (and I honestly hate that)

Unknown said...

I so wish you were nearby - where i could help. Annie has EDS, as you know, although hers would appear to be nowhere near as severe as yours, but nonetheless, I find I can ease her pain with massage - and so I do. Almost every night I massage her back and hands, her feet and butt. I don't know if there is honest therapeutic value to what I do, or if it's just a placebo effect - but I do know that what I do makes her feel better - makes her sleep better - and that makes ME feel good.

Besides, massage seems to be something I have a natural instinct for - people constantly tell me I have great hands and that I'm in the wrong business.

Like I said - I wish I was close enough to where I could help.

Arienette said...

I think you've just hit on something for me that I didn't even understand fully myself, although I've skirted around the issue.
I'm 22, and for a year and a half have been in near-constant pain. First, it was because I was pregnant, and it would go away, surely, as soon as I had the baby, or near enough, RIGHT? But it didn't. Then I was convinced that I as just taking longer than normal to heal. But now, and for the last few months, I've really really known that something is wrong.
So why, oh WHY have I not spoken to a doctor yet? On the surface, there are lots of reasons, but I think really, at the heart of it, I'm scared of the diagnosis. I am scared someone is going to tell me what's wrong and that I'll have to accept that I'm going to be in pain for the rest of my life, and that it will only ever get wore. I have deluded myself that this, whatever it is, will go away, that it's not permanent, that in 4, 5, 10 years time I will be a normal person in their mid twenties or early thirties.

The idea that the reality may be that at 32 I'll be even further crippled by pain and a body that just will not do as I ask, is enough to send me to the edge. And that's forgetting the fact that people just do not 'get' it. They don't get how a healthy looking, abeit underweight, young woman supposed to be in the prime of life could possibly have the sorts of problems I do.

I take my hat off to you - I've only managed to ignore/accept the pain for a few minutes at a time, and that's after paying mega bucks for a CBT course a couple of years ago. Most of the time pain owns me ... but I have noticed that the times it becomes mild (just post period usually) I barely notice it ... but it's still at a level that would trouble a 'healthie'. I guess you do learn to adjust.

Anonymous said...

If CBT has helped you cope with dealing with the pain on a day-to-day basis then that is good to hear.

But unfortunately for myself and others; it's about as effective as a catflap in an elephant house.

Opioids have been the only thing that has given me any greater quality of life and it would be impossible to manage without them due to NHS errors in "treatment" actually worsening my condition.

The problem lies in the fact that hose suffering from chronic-organic pain struggle to get adequate opioid-analgesia prescribed at all due to the current over-promotion of CBT and GET (graded exercise treatment) by NHS clinics.

CBT does not help when your leg muscles simply give-way due to too-much pain from standing too long. I can be as "not bothered" by it as is humanely possible but; I still will collapse on the floor regardless.

Claire: I totally understand what you're saying but I'm making a slightly different point. I can't make my pain go away, or change the days when I can't do more than crawl, it's incredibly obvious to others that I'm in more pain than usual because it's visible, I don't (usually) have to tell them. Also I'm pretty selective about who I'll spend time with so no spoons wasted on people who 'choose' not to get it.
The point I'm trying to make is that it's a way of thinking about pain, of not being bothered by it which is the most helpful. It's possible to think that way and still be able to communicate effectively about pain to my doctors. I hope that makes it a bit clearer? BG Xx

Lou: Thanks my lovely. Massage does seem to have a hugely beneficial effect and Annie is a lucky lady BG Xx

Arienette: I understand. I didn't get diagnosed until 28 and was in a proper mess by that point. All the disbelief and misunderstanding set me on a path of believing I had to get better, and that's a really hard concept to change. It'll take as long as you need it to take, certainly it took me years, but it was only once I let go of that desperation to 'get better' that I actually started improving. BG Xx

CCB: I can always *feel* the pain, that doesn't really alter, it's that I've learnt to feel it and not be upset by it. Pain used to completely own me, it's a really good way of describing it. Pain was the enemy to be beaten back or driven away. Unfortunately that's fighting a losing battle as pain can't be defeated but it can be owned and mastered, if that makes any sense? BG Xx

Anon (admin note, please pick a name to comment with)
I think you've missed the point of this blog. My joints still dislocate hundreds of times every day, if I'm going to collapse because of muscle exhaustion, dislocating or autonomic dysfunction then I'm going to collapse, there are minor things I can do to learn the precipitating factors and avoid if possible, but ultimately my body has a genetic fault and there's no altering that (nor would I actually want it to be altered)
The point is that it's perfectly possible to change your thinking about being in pain, which dramatically improves quality of life even though it can't do anything to take away that pain.

As for opiates, I've just spent the best part of a year weaning myself off Oxycontin having been taking it for most of a decade. I am absolutely, definitely better off without controlled drugs, physically and mentally. I'm still in pain, it's just a more natural type of pain and easier to deal with.

I have no formal experience of CBT or GET as I don't have ME but as someone with Ehlers Danlos Syndrome I think graded exercise programmes are essential for those with chronic conditions-I suspect they fail because they expect way too much of the people they are aimed at-for example I have recently spent about 2 months learning how to activate basic reflexes with my physio. At first simply turning my head to one side whilst lying down was too exhausting to manage, now I can do it properly and confidently. I very much doubt any of the current GET programmes allow 2 months for that kind of thing as they are aimed at 'curing' people from their 'mental not physical' problems and getting them off benefits not actually about helping people to manage their conditions in the best ways they can. BG
PS: Some years ago I saw a study which said that 7/10 people diagnosed with ME were actually hypermobile-always worth checking!

Aliena said...
This comment has been removed by a blog administrator.
misspiggy said...

As usual you put into powerful and beautiful words things which many of us are experiencing, yet which are so hard to express. You doing this really helps me to move towards recovery, as I find I can kind of piggyback off the clarity and shape that you bring.

One thing I've found is that generating the right space and relationship with pain is an extremely tiring task, and uses up huge reserves of energy - particularly as it's so easy to get into the cycle of suppressing one's awareness of everything, and then losing even more proprioception = more injury and pain. I know that what you are talking about is something different - and it's what pain management courses should teach.

Having said that, I've recently been on the COPE pain management course for bendies at University College Hospital London, and found it very useful - although I had to work hard to extract was was positive for me, and ignore what was less so. It's open to anyone in the country (as long as they can get themselves to London and fund somewhere to stay..), and it did give us lots of space and support to try out ways of strengthening ourselves in very individual ways. There was lots of focus on meditation and Buddhist mindfulness techniques, which do seem to help with getting the right mindset in place.

What with the rest of life, just getting there and taking part was enough to nearly drive me into the ground, and would probably be too much for people with the most severe challenges, but definitely worth recommending overall.