Living with chronic pain

My husband and I were talking to a friend recently about pain, what it is like to live with and how we cope with it.

Now looking briefly at my GP's letter to the DWP, I am diagnosed with fibromyalgia, CRPS, unusual forms of migraine that affect one side of the body and endometriosis - as far as pain conditions go. My husband also has chronic pain from two collapsed vertebrae, which impact on the nerve going down his right arm and have caused damage, as well as a serious leg injury which is currently undergoing treatment. We know a little about living with pain. 

People who do not have pain will occasionally say things like "You get used to pain" or "After a while you start to not feel it so much". Both of these statements are completely inaccurate. You do not get used to pain, although you get used to being in pain. Those are completely different things. The pain is still there and you still feel it as much as you ever did, but you become so used to being in that much pain that when you have brief moments where it vanishes you are utterly surprised. Often you do not realise what has happened until that brief moment has passed and the pain is back.

Does living with chronic pain mean that you cannot be productive? 

Of course it does not! Many people are still able to live full and realtively normal lives while being in chronic pain. They may have to make some adjustments to the way they do things or use coping methods, but they are still able to work. They are still able to walk, to do their hobbies, socialise and generally live their lives. 

For some people, like me, the pain is more wide-spread and more serious. That does not mean that I am unable to enjoy life though, it just means that I have to do things differently to other people. I live in a combination of having to plan things ahead of time and being aware that even with long-standing plans I may have to cancel at the last minute because of the severity of pain I am experiencing. 

I spend most of my time bed bound. The pain is not my only problem, in fact for me it is not the worst problem. But it is one of the more significant reasons that I end up stuck in bed and not able to leave my home. There are some hobbies that have fallen by the wayside purely because I am no longer physically able to do them. But I have also picked up some hobbies that I had abandoned long ago, like my drawing. I also study, I write - for example - My 'zombie blog', though that is not the only writing I do (really it's just something silly to keep me entertained). I also have a try at different things, some of which I decide are not for me, but others I pick up and do on the odd occasion; I have a half knitted scarf sitting beside my as I type, I have a book on patchwork on the other side of me. I read a huge amount of fiction, largely sci-fi and horror because I like to escape. 

You do not have to be a brilliant artist to draw, you do not have to be a brilliant writer to write and you do not have to be the greatest singer in the world to sing. Whatever hobby you do that keeps you entertained is fantastic and who cares how good your are at it - the only person whose opinion matters is yours. If it is fun and you enjoy it, then do it. 

The point of bringing up my hobbies is this: when you live in constant, agonising pain you need a distraction. You cannot have people talking to you 24/7 because sometimes your brain will not work, or sometimes you will be so angry and frustrated at the pain that you cannot tolerate other people around you. They also may not want to be on the receiving end of your temper all the time, no matter how much they love you. Hobbies can be a wonderful distraction and they form part of our combination of methods of coping and managing the pain. 

Yes, I am medicated. I am on morphine patches, which give me a constant steady feed of drugs. I take a whole host of other medications, not all for pain. But I tell you what, distraction works almost better than the meds. 

Having people visit can be wonderful though and the best distraction/medicine going. They say that laughter is a wonderful medicine and I cannot disagree. Spending too much time alone can be dangerous for a pain patient. It gives our brains too much time to think on the negative things in our lives and we can end up becoming depressed, or worse. We need people around us, but we also need people to be patient and understand that living with chronic pain is difficult. It can make us forgetful, partially because of medication, and it can make us a bit short tempered and irritable. Keep talking to us for more than a few minutes though and I promise that not only will we have fun, you will also make more difference to the life of a chronic pain sufferer than you can ever understand

I would say that is it probably best to just drop a quick call or text first to make sure I am awake or there is a chance you will just be knocking and knocking with no answer. Of course, if I am on my own I will not actually be able to get to the door to answer it anyway - though I guess we could shout through the letter box! The bedroom is next to the front door, sort of, so that could work - see, I'm adaptable. Huh! I am pretty sure I read that it was the species and people that were able to adapt quickly that survived the last ice age. On that logic pain patients are the perfect survivors; there is no-one more adapatable than a pain patient who happens to be a good self-manager!

Okay, I admit to being lazy and needing a good push in the right direction

Actually made it to Weight Watchers for the second week in a row, which is fairly unusual for me as for quite a while now I have generally only been well enough to go once every four or five weeks. I am definitely not complaining as I actually lost two pound this week. I am not thinking about how many more pounds I need to lose, just concentrating on trying to eat sensibly using home made food prepared by my Chef (aka my husband, Pete). I do like that Jane, our Weight Watchers Leader has such a strong focus on freshly prepared food and has done since before Weight Watchers jumped on her band wagon. She has also had a focus on moving more and exercise for a long, long time and does encourage people no matter what their circumstances. This is not an advertisement for Weight Watchers, more like praise where it is due for a lady who had the right idea long before anyone official came out and agreed. 

I think that for me the only way I actually lose weight is to really have a lot of structure. That means planning meals for the week, including snacks if possible and making sure that I stick with that plan. Admittedly an A1 sized flip chart sheet sitting in the living room is hard to miss, but even with it being on full view, there is the option of ignoring it. However I know that if I ignoring it my arse is gradually going to get bigger and bigger until I actually become wedged in a doorway and someone has to call the fire brigade to rescue me. Not really the image I want to leave a load of firemen with!

I do have a tendency to be the same with everything. It really is not only the food planning and weight loss that ends up being last minute and guesswork. It is certainly something that I have found myself doing time and time again when it comes to essays and studying. Yet get me on a subject I am truly interested in and I will do well; for example the OU's now defunct course "AA310: Film and Television History" was the best course I have ever done with them. I actually enjoyed doing research and writing essays. I found the subject fascinating, particularly my last essay where I discussed feminism in Joss Whedon's series 'Firefly'. Sounds odd, I know, but there is already some interesting research and academic writing on the subject in general and Joss Whedon's many TV series in particular. I ended up gaining a distinction on that course and came very close to getting a First Class Honours degree because of the renewed interest that course inspired in studying. 

Unfortunately the interest in studying is rapidly on the decline right now. I get interested in my current course for about five minutes, then realise that I do actually find the tutor mildly irritating and the course rather bleurgh. I think that once this current degree is completed, my second with the Open University, that will be it with that particular institution. They are moving away from the freedom of choice that made the University an attractive alternative and becoming much more like a traditional University. Yet many of those 'traditional' institutions seem to be moving more in the direction of some truly inspiring distance learning courses. All good things come to an end, I guess.