I am literally typing this with a stopwatch beside me. I am timing how long I can sit – propped up correctly with heat pack etc. – and type before I notice my back hurting, When it does I will take a rest before starting again. Why? I’ll let you know directly.
Oops – there goes my back. Be right back …
So if this blog reads a bit choppily * that’s the reason.
Firstly, something lovely to report. After my blog whingeing about having to go to The Bad Place, and wondering (artlessly, I think) if any kind friends would be available for fresh food market-shopping with me, one dear friend put up her hand.
On Wednesday, she picked me up in the morning, and we went off to the markets. We shopped together (she pushed the trolley), and she kept me sane with her lovely loveliness. And when we got back, she schlepped all my groceries back in and put them into the kitchen for me (oops, pain: BRB).
My ‘rest breaks’, by the way, consist of standing up and doing something else. Something that consists of not sitting, so I’m wrapping pressies for a family thing tomorrow and doing general housework. About ten minutes per rest break.
Anyhoo, my friend was so lovely about the market and I found it was actually something pleasant and lovely, and not terrifying and freaky. And I look forward to next week. And I love you very much, K. You are my hero.
And here’s our trolley, shortly after we started. Yes, we shopped quite a bit more after this. Mmmmmm. Inexpensive fresh vegies …
Ugh. BRB. **
OKAY so why am I only managing to write in 2-minute segments? (Roughly what I am managing at this point.)
Yesterday the Captain and I went to the How To Be In Agony course at the hospital. *** Dammit. BRB.
I had been joking about it being like a sort of compulsory community service thingie before you’re allowed to have the painkillers, and speculating whether we’d all be made to wear orange jumpsuits.
Turns out that was very mean of me. It was actually an extremely useful – and extremely compassionate – service offered to people living in pain, via our public health service. So, not a joke at all.
There were around 15 of us, pain sufferers plus a few supporting family and carers. BRB.
Oh god, not sure how long I can take this for.
Okay, so it was illuminating. We all got our chance to introduce ourselves and say a few words about our pain and why we were there.
And that was a hard thing to listen to. We were all grown-ups but some looked pretty young, there was a range of ages. The stories were horrific. The things that really upset me were the person who was trying to cope with mental illnesses along with their pain; the person who had had a zillion surgeries, none of which helped at all; the person trying to raise three kids under the age of 10 with their severe pain …
… The several people who had become addicted to their painkillers and had to go through the process of dealing with withdrawal and life without pain relief; and the person who has been living in serious pain for many years with no diagnosis (and when they said ‘I finally got a diagnosis recently but it has just been taken away’ I think my heart broke.)
ZING. My nerve pain started up, big time, and I spent the rest of the day session jumping around like I was sitting on fire ants. Also – ironically – my back was KILLING ME by the end, in spite of my standing up for much of it.
But the hardest part – BRB – was when we started discussing the impact that pain has had on our lives – physically, financially, socially, emotionally and mentally – I realised that my own experience has been pretty grim too. I actually did belong there among them. We were in it together. I haven’t actually been exaggerating things, or inventing things: I haven’t been imagining this.
BRB. (Interesting. The more upsetting the topic, the quicker the pain appears.)
Anyway, that was the hard part, acknowledging how awful it has been for us all. The GOOD parts were many:
- Being among people I understood, and who understood me. I felt very much among friends.
- Having access to psychologists, physiotherapists, nurses and a specialist who were all highly experienced with, and knowledgeable about, pain and its impacts.
- Understanding that there are things that we can all do to help ourselves live life a bit easier.
It was a bit sad to hear ‘We cannot cure your pain. You will be in pain all your lives’, but it wasn’t entirely unexpected either. On the other hand, they had many first-hand examples of how their approach to pain management has actually, practically helped people to live happier lives.
Ho hum, BRB (better timing there).
I would love to tell you about the whole thing, but it was a full day’s worth with a lot of information. In fact, I’ve signed up for a couple of the elective sessions to hear a bit more about several of the topics.
But here are a few of the points that have really stuck with me from the day.
The study of pain is fairly new. We used to think it worked kind of like this: you hurt yourself, your body tells your brain that you are in pain. But that isn’t how it works at all. Pain is an output: the brain generates it. And not in just one area of the brain, but a whole matrix of areas.
The areas of your brain that output pain include areas that process emotional pain. As far as your brain is concerned, there is no difference between physical and emotional pain. Also, it is 150% possible to experience pain with no tissue damage whatsoever (e.g. my poor back), or when there is potential damage.
Acute pain – pain caused by obvious stuff like a broken leg or a burned finger or your friend beside you at the cinema giving you dead-arm because you won’t share your sweets *****, is best dealt with medically, i.e. setting the leg, running the finger under cold water, kicking your friend carefully in the shin.
Chronic pain – BRB – pain that doesn’t go away for over six weeks and may not have any easily identifiable cause, is a biopsychosocial problem. It involves many different body systems, it causes problems functioning physically and psychologically – there is no obvious cure for it. The medical stuff is still important but that won’t do the whole trick – you need psychological and social interventions as well. Because a person in pain is a whole person, with a history and a personality and so forth: nnot just a broken bone.
BRB for pity’s sake.
Okay. Let’s see if I can describe this properly.
When you are in pain your brain basically goes into fight, flight or freeze mode. Yes, the same thing that happens when you get a nasty fright. Only with chronic pain – your body pretty much goes into this mode constantly. For no good reason. Which is really not ideal.
When this happens your brain helpfully floods your nerves with things like adrenaline and cortisol. These helpfully open little channels in your nerves so that they can fire up and do stuff like, you know, run away from the sabre-tooth tiger.
The more your brain produces these hormones, the more little channels are opened up to let your nerves go haywire.
You can probably see where this is going. If you have this happening all the sodding time, your nerves are basically a mess of freaking-out channels, constantly, which means you are hyper-sensitised to everything, always. Hello, life in chronic pain.
So you have pain, so you get more sensitive, which means you get more pain, which means you get more sensitive, which means you get more oh soddit, BRB.
And remember, this is mental and physical and emotional all at once. So there was a whole room of people who are pretty much wired to the max. Example: they showed some pictures of people experiencing painful things, and the whole room as one recoiled and shouted ‘OUCH!’ And we all get really irritated by things that shouldn’t be irritating: which explains partly why sometimes I can’t bear the sensation of clothing against my skin, or feel like I’m going insane because it’s slightly too warm in the office, or suffer complete nervous system overload occasionally in shopping malls. Which is really really unpleasant by the way, and has rendered me terrified of shopping malls.
And when we hear sad things, it hurts. And when we are tired, it hurts. And when we’re a bit excited, it hurts.
And we’re constantly sad, tired and over-excited.
It’s a nasty spiral. BRB.
… BRB. Again.
Okay. So pain cannot be cured (especially not using painkillers dammit, otherwise the pain doctors totally would just put us all on painkillers forever) – but those pesky nerve channels can be closed. Using techniques. Techniques that take time, patience and practice.
Pain is a spiral, but interrupt the spiral, and keep interrupting it, and there is some chance of managing the pain eventually.
Relaxation every day is seriously mega-important. D’oh! I’ll have to start that.
It is also seriously mega-important to keep a grip on my mind and be aware the moment I start doing The Thing. I need to learn how to desensitise my emotions a bit. And that will take daily practice and trying to recognise and avoid triggers as much as possible.
The world is full of triggers. I need to learn to mellow the hell right down. Which is hard on account of being hyper unmellowed via extreme pain channels.
Now, all this BRB-ing. It’s part of a thing called Pacing. I think, my pain levels being what they currently are, I might have to explain that in detail some other time.
But to start with, I need to work out the average amount of time in which I can do things such as sit oh for PITY’S SAKE BRB
… Sit, before my back pain starts to appear. Which, today, being a pretty bad day (but not a flare-up day), seems to average slightly less than 2 minutes.
I’m guessing it might be a bit more on a good day, but I’ll have to wait for a good day to find out. Might not happen for a while: I had a mad-busy day today and have another tomorrow and I don’t expect the day after to be much chop.
Anyhoo, once I know how long I can sit for, I’ll start sitting for only 80% of that time, then taking a break.
Which, yes, is going to be an extreme pain in the ar … a difficult thing. So please don’t ask me to any cinemas or concerts in the immediate future. ******
Once I’ve trained my brain that I can go ahead and sit for that long without pain, I can start to slowly increase those times.
The idea is to convince my brain that sitting does not, in fact, constitute a deadly threat to my life, and therefore it’s okay not to flood my system with panic-juice every time I do it.
So … BRB …
So, in summary: I now feel like part of a sort of adorable, affectionate, messed-up Community of Agony. I understand a lot more about my condition. I accept that I am not, in fact, lazy, stupid, useless, a burden on society or a drug addict (but I need to keep convincing myself of this).
I am a fragile bundle of nerves who catastrophises easily (you may not have noticed) ******* but so are a lot of other people, all of whom are perfectly worthy members of the community. It’s not our fault and we didn’t cause it. I can only sit for a couple of minutes at a time, and I need to learn how to relax and chill the heck out, for real. I no longer believe painkillers can fix me, I know I’ll just have to deal with the fact that pain is now a part of my life – but I also know that my life can be improved, when I put in some, BRB, some patient work.
I have learned that my life may not look the same again. And it may look very different from how I expected it to look. But it could look pretty good all the same.
Cor though, all this getting up and down isn’t half making my knees hurt …
* It’s a word now, okay?
** If my Mum and Dad are reading, this means ‘be right back’. Also, hi Mum and Dad! XXX
*** It’s not actually called that. It’s called JUMP: Journey Into Managing Pain. I know, who writes these acronyms? ‘Journey‘? Seriously? ***
**** At least it wasn’t called ‘Your Pain Discovery Experience’.
***** Never happened to me.
****** Actually, please do keep asking, because you all make me feel very loved. But I’ll send my regrets in advance.
******* You did notice? Goodness me.