The not-so-easy path to acceptance.

[teadrinker]

Thank you to everyone for their feedback on Pain : My Annoying Friend (30.7.12)

I need to add that I am no Pollyanna. I am not the sort of person to go around with pain nipping at my heels and a cheery smile upon my face. My world is often half-empty. I take an instant dislike to anyone who is annoyingly upbeat about miserable situations (particularly before my third cup of tea of the day).

In fact, what I wrote on 30.7.12 was exactly the sort of the thing that a few years ago I would have run away from reading.

One sleep-deprived, achingly awful morning, a pain consultant recommended that I buy a book with the words “Overcoming Chronic Pain” in the title. I only bought the book because he said to, and because I was the type of kid at school who always did her homework and old habits die hard. I only bought the book so that at my next appointment I could say “yes” when he asked me if I’d bought it, and everyone would see that I was being an obedient patient and they wouldn’t give up on me. I only bought the book. Well, he didn’t say to read it...

To be truthful, I was terrified of opening the pages. Much as I wanted to rid myself of the curse of pain, I did not believe that it could be got rid of by any means other than magic pills or needles or scalpels. No one had been able to tell me why it was there, so it just didn’t make sense that I would be able to banish it by reading a book.

If reading a book and thinking differently about the problem was so simple, how come these books weren’t being dished out for free on the NHS, instead of the clinic waiting room being stuffed full of haggard faces with fat hospital notes?

If there was any conquering to be done it wasn’t my place to do it. I was the patient, and if you’re a patient you go the doctor who makes you better. I started to envy people I knew who had operations to fix bits of them that had gone wrong or broken. I felt a bit guilty about this because some of them were quite ill & I wasn’t, but at least they were completely better afterwards.

Worse still, what if I did manage to overcome it completely from a book? Surely that would prove everyone who had whispered the words “a bit stressed” behind my back as right? It might look like I had been making it up all along, and the shame of that would be far worse than anything I’d felt already.

For months I avoided even touching the book, and developed a strong aversion to other books, websites and adverts in the back of newspapers containing the words “overcome” and “beat” in the title. I did not bother to return to the physio who told me I would just have to “live with it”. Who did she think she was! What did she think I was doing? I had pain and I was alive wasn’t I, for goodness sake!

Meanwhile, the rational side of me knew full well of the benefits of taking responsibility for managing my condition. As a healtcare professional I frequently had to break it to patients that they had got what they’d got for life (don’t worry, I’ve never put it like that). We talked at work about patients who “didn’t engage” in their treatment, who lacked motivation to change the habits of a lifetime and how much that hindered their progress. I wonder how I came across to the professionals looking after me? I would probably have found myself frustrating.

That book and I had a staring contest for about a year – it beckoned to me from the bookcase & I glowered back, but it won in the end, and I started to dip into it with bad grace. And I did learn a lot and I even did most of the exercises, and yes, I started gradually to take on some of the tips. It helped. I read other books and used the internet and found out as much as I could about pain and how the human body works. It helped to get it all worked out in my head, to have an explanation for what was going wrong.

I still didn’t accept the pain for a good long while after that. I can’t tell you how I got to where I am now. There has been no light bulb moment. I can’t claim all the credit either; it involved trusting my GP and my current consultant about interventions. It meant working out for myself what eases the pain – and then acting on it fast instead of being eaten up by it. It meant knowing my limitations and acknowledging that if I want to be Wonder Woman for a day that’s fine but it’ll hurt later.

I am not perfect. At the moment I am battling with my conscience : I could send my pain on a little holiday if I sorted out my wonky posture. A short term commitment to some pilates classes for example would pay dividends. But I can’t face having to apply myself to it just yet, I am sick of having to change things and of attending appointments. There’s always something more interesting to do. It’s nice to pretend to be normal for a while.

I hope that I am a better clinician for my experiences and have a greater understanding of why some patients might appear resistant to change or taking medication or doing exercises religiously. Yes, we all have a choice and the power to be positive in the face of adversity. For some of us the road is longer than others or we decide to follow our own maps. We are not being “difficult” on purpose. If you’re reading this and think I sound like an evangelical reformed smoker and you want to slap me, I know where you’re coming from.

[77tiger05]

I think you sounded great !!! Sometimes we just need time to move on and move on in our own good time!!! Sounds kind of hinky but it works. Good luck to you!!!!!

[Hidden]

MYchronic pain began thirty years ago I have taken cox 2 inhibitors ,tramadol, immuno suppresants forabout the same time the contra indications have been very sever and illness follows them. becuse the medications collapse my immune system have also tried to take my life on a few occasions., I also have too use v tens to clear pain

Amitrytalene is also given to effect nerve pain and now I have to take deppresants to prevent me from doing the same

Life can be a real trail when in pain, you believe that this world is pergatory and what you have done to deserve all this.

Not withstanding this life is a trail no matter what has been put in its path.

My felling is that you have too live what you have been delt and try and carry on. We all feel wrotten and have to stand back and try to feel positive that we are on this world too learn

we willalways find someone that is worse off than you, So we all need support, try and walk in anther persons shoes, this does not mean that no-one cares.

We allneed to be strong and deal with the cards that we have been dealt

The more negative we feel the worse the pain is, so keep a hold do what you can, no-one can ask of you more

[teadrinker]

You're right. I'm going through a flare-up at the moment and it's wearing. But the good thing is it's the end of the day & I've got through it! On the one hand, none of us wants the pain and it's not a positive thing, but on the other hand the good things about today far outweigh the pain I had.

[Hidden]

You've explained it exactly! At the beginning when finding you have chronic pain, you are confronted with so many things to try and do to kick start your motivation, stamina and health, that sometimes drs and professionals forget that we need to rest in between, or need to rethink the plan because something didn't work out.

Well, the way I see it is, I've got chronic pain and nothing so far has worked outstandingly to ease it. I use a very personal mix of alternative therapies (refusing painkillers is my mantra) which when combined produce a reasonable result, which means I can have a bit of a life.

So why delay ? You can get yourself better than you are now! I hear friends and family say. Just because I can take my time I say, I'll still have the pain in 1 or 2 weeks, 1 or 2 years, so why rush around trying to get on top of it all the time. I can take my time and really focus on a different therapy, get to know it and how it affects me. I can even work out why it affects me I've been doing this so long. Then I can work out if it will fit into my trusted regime that keeps me on my feet.

Sometimes I feel like I'm the only one who knows that this is as good as it will ever get. I lost hope along time ago. Not in a negative giving up on the world way, but in a realistic this is my lot now kind of way. It was a release.

I suppose I've turned it into a game. When family or friends offer me a new thing to try, I play along, they are so desperate to help me, It wouldn't be fair to them to flatly refuse after all they've taken the time to think about it and how it might help. I don't tell them that I tried and rejected it years ago because it made no difference at all. No better and no worse.

I rarely visit my Dr with my pain. I only go if it changes significantly or is acute on chronic. Well, I'm not stupid - I don't want to damage myself any more than I already am.

[teadrinker in reply to Hidden]

I think other people want to fix things so they make suggestions that they think will help the pain. They mean well, but deep down, when you live with it, you begin to know what's going to help or hinder. But if you reject the kind suggestions too quickly it can look like you're not trying to get better.

I've read a really good book - I think it was called "The Pain Chronicals" by melanie Thurmstorm (I'll have to check the name). She has chronic pain and describes how she politely accepted / tried rememdies for her pain that friends told her would help, knowing that there was no scientific reason that they would.

I like your point about visiting the doctor. In times of distress & panic I've felt the urge to make an appointment, but then sat back & rationalised it - the doctor can't actually make it better so there's no point wasting both our time. There's only me who can help me.

[Hidden]

I've avoided help and books and forums for so long just because I've been able to get on with it and manage it reasonably well. But now things have changed and I've had to rethink what I do and how I do it, I'm finding that I've been doing OK so far, not too far off what everyone else is doing.

People can't understand that I really don't mind the pain if its the type of pain I can control and use my variety of remedies on. It's the frustration I have problems with. I hate having to sit back on a good day and carry on as normal because I know what the consequences will be. I hate having to timetable my life and ensure I have enough mix of activities that I don't upset the balance. I don't like all the free extras that come with an incident - a couple of days ago I had to do an emergency stop. next day my lower back was severely stiff, tender and sore. I anticipated that one. What I didn't anticipate was that both knees were swollen and extremely stiff as well. Then later on in the day my neck joined in. And unlike those without pain, I can't work through it or I will spiral into a whole mess of worse pain and stiffness. I have to rest and do gentle stretching exercises.

Really some days I have so much me time but is absolutely useless to do anything with.

I am enjoying reading other peoples experiences.

[teadrinker in reply to Hidden]

I think it's a real skill to be able to get that balance of activity and rest, particularly if that's not in your nature. It's not in my nature. I probably work through the pain too much. I know full well I should have rested a week ago and not ignored the warning signs, and I am paying for it now. "Me time" is so precious and I hate having to take it easy and waste it, so I tend not to take it easy.

Well, it's just another choice I have to make.