Living with PAIN - My Story
I had a motorcycle accident 8 years ago. I was side-swiped by a minibus whilst out on my Honda CBR400 motorbike. I sustained a crush injury to my left foot, which in itself was not to much of a problem - my foot and leg looked gross - swollen and black 'n' blue up to my knee - but it would fix itself, UNFORTUNATELY . . . . . six months later I was still in agony.
My GP was unhelpful, telling me "the pain will go away on its own", I paid privately to see an orthopedic consultant I had seen a few years before following a previous motorcycle accident. Following x-rays and an MRI scan - which all showed up clear - he referred me to a pain consultant - he gave me the diagnosis that would totally crush me - and in time would totally change me from the confident, fun loving, "I can conquer the world girl" I was, to someone I didn't recognise or even like.
The diagnosis of CRPS (Chronic Regional Pain Syndrome) would mean that I would be in continual pain for the rest of my life. I had a lumbar sympathectamy privately - and following the success of this procedure I went back to my GP and insisted that I was referred to the pain clinic at Hope Hospital in Salford - under the care of the pain consultant.
He was able to also prescribe me more effective medication as well as carry out procedures to ease my pain. After several lumbar sympathectamies - which initially were successful - the first one gave me six months pain relief, but gradually the effectiveness of the blocks grew less and less and it was decided to try nerve blocks directly into my foot. These gave me approximately 2 - 3 weeks pain relief. Although I was happy for any amount of pain relief, I was told that it simply couldn't keep being done and it was decided that I would have a spinal column stimulator fitted.
After the Operation
Following the onset of CRPS and eventually having an SCS fitted my life had to change, there were now certain limitations to things that I could do, riding a motorbike was now out of the question, due to the risk of damage to my SCS if I had an accident.
To aid my recovery following the operation I got a dog, which I began training with Bury and District Dog Club - this gave me a new sense of purpose, a new challenge. Whilst training my own dog I grew interested in becoming an instructor myself. The club kindly said they would help me do this, so I began my instructor training. After about 8 months I was given my own class to teach and attended a PDTI course, with another instructor, to gain a qualification in pet dog instructing. It was a weeks residential course and proved to be a real challenge, as I had the added complication of my CRPS, which is affected by stress. The course was intensive to say the least and the hours were long, which brought on the inevitable flare up of my CRPS.
The reason I am telling you this is to show you that, although sometimes we all need to give in to it, for want of a better description, there are times where we must strive to not let it rule our lives - yes, I did miss an evening lecture, but only because I could not walk, see straight or think clearly, so I took the evening out to relax and let my symptoms calm down, these are the times we think CRPS has won, but I would disagree, it was me taking control of it, I wanted to finish the course and gain my qualification, an evenings rest would see me a little better in the morning, so I could carry on, there are times it might take a little longer, but we must not lose heart at these times, but be safe in the knowledge that the symptoms will calm down enough for us to strive to obtain our goals, this is an important thing to remember, we need to learn how to live with CRPS, learn how to deal with it, there is no point getting angry at it, although we all fall foul of that sometimes, but we need to learn that getting angry increases stress, therefore increasing the pain, the more we learn to accept it and deal with the bad days the shorter the period of a flare up will be.
I did finish my course and gained my qualification, I was the highest scoring student at my level and was awarded student of the year, an award given to only one student each year. Yes it was harder for me than possibly any other student, but this made my qualification and award all the more rewarding, I had not beaten CRPS, I now refuse to battle with it, I am learning to live with it, overcome the bad days and put them behind me to obtain my goal, no longer will I allow it to rob me of what I want to achieve, I just realise I might have to work harder for some things, but in the end it’s worth it.
So, the moral of my tale is, we have to learn to deal and live with CRPS, we have no choice, your life may need to change, but who knows you may discover something you truly love doing that you perhaps wouldn’t have discovered if you had not developed CRPS! Strive for what we want and never give in, if CRPS robs us of our lives it is because we allow it to.
Relationships and CRPS
CRPS lost me my marriage! This does not mean it will happen to you - but it has opened a new chapter in my life
I had been with my husband from the age of 19, I’m now 43. When I got married I thought it was for life, that was what I wanted. During my life with my husband we rode motorbikes, raced mini-moto sidecars, very successfully I might add, we were 8 times British Champions. We ran a racing club for 7 years and produced some fine racers from our youngsters - we have 3 of ‘our kids’ racing in Moto GP.
Yes, life was good, then my bike accident happened and I developed CRPS. I struggled massively to come to terms with it, and it is only after suffering with it for 8 years that I am slowly coming to terms with it, yes I’ve had help, but i’ve accepted whatever help has been offered, dealt with the so called stigma of seeing both a psychologist and psychiatrist, but who cares what other people think, if it helps accept the help on offer.
My husband has struggled more and more over the 8 years, it’s hard to see someone you once knew change, unfortunately my husband just wanted things to go back to how they were, wanted me to wake up one morning and I would be magically cured over night, he never accepted that it was with me for life, he simply didn’t want to, he wanted us to continue doing what we used to do, refused to accept that this would never happen, that our lives had to change, that we would need to embrace new things.
As time went on he grew more and more angry and resentful at the situation, he hated the fact that I accepted that there were things that had to change, he saw this as giving in, I did try to do the things that he wanted, I rode my bike for a short period of time, but soon realised that you can’t live for someone else and what they want, putting myself at risk was just stupid, I wasn’t even enjoying it! So I simply refused to do these things, this made him suspicious, why was I changing, simple answer, I had to, but in his mind I must be changing for a reason, he never took the time to come to appointments or learn about my condition, in his mind why should he, it was me that had CRPS, not him. He began continually thinking I was having affairs and accusing me, he began drinking and blaming me for everything, the drink only fuelled his anger and suspicions, and when I began training as a dog instructor he hated the fact that he could no longer control me, I was learning to move on and live with my condition and if I was doing this why wouldn’t I go back to doing what he wanted to do, he never has and never will accept that I simply will never be able to, he hated the fact I was beginning to be happy again, beginning to enjoy life, look forward to the future instead of back to the past, if I was in so much pain, how could I be happy? the more I improved, the more he drank and blamed me, I could take it no longer the stress of living with him was making me ill, the flare ups of my CRPS were almost daily, I had to get out. They say the two most stressful things you can do in life is move house and get divorced, I was facing doing them both, at the age of 43!
The break up was nasty and at times unbearable, but I had good friends around me, who were there for me at the times I was most vulnerable, there were times I was so depressed I wouldn’t shower and didn’t want to leave the house, so they took me out, showered or not, let me cry or just listened to me, one of the best things someone can do for a CRPS sufferer is to listen, don’t try to give answers because there are none, then change my mood, they never let me slip any further down than I already was, it’s funny how some people ‘just get it’, but these are the people who listen to what you are saying, don’t ever think you’ll never find someone to just listen to you, it’s just a case of finding the right people! These friends were my saviours, gave me the strength to do what I had to do, I will be ever in debt to them for what they did for me.
So it happened, I got the courage to tell him that our 24 year relationship was over, I could no longer live with someone who believed it was me and my pains fault everything was going wrong, it was my fault he drank, and to use his words ‘it’s you and your pain that makes me drink’ and telling me ‘It’s not you, it’s you and your pain and suffering I can’t live with’, unfortunately CRPS is with me for life, we are now inseparable, so if you’re in my life, so is CRPS, good days and bad!
Yes, it’s hard for someone to see another suffer, but when you have CRPS you need to be with an understanding partner, who will hug you when you’re bad, who will listen and not try to provide answers, in fact sometimes say nothing at all, except the words ‘I love you,’ you don’t need to hear the words, what about me, what about how I suffer watching you suffer, you need support at the bad times so you can both have good times when the suffering eases, CRPS can bring you closer, if you have the right partner, there is no better feeling than when someone has held you through the bad times, then when you feel better, the closeness you feel for that person is intensified with the realisation of what they did for you, it’s a simple thing to hold someone, but unless you have truly suffered pain you can have no understanding of how much it helps
The Future
Now to the happy bit, I have moved out and into my new home, just me and my boy, Fergus my dog, yes, it will be hard, but not as hard as living with someone who doesn’t understand, my pain has decreased, my flare ups less frequent, I can now have my bad days where I need to rest or simply am unable to do things, but I recover much faster and for the first time in a long time I think I can say I am truly happy, it’s a little scary at times, facing the future alone, but who knows what is in store for me, it’s the start of a whole new beginning, a new chapter of my life
So remember, yes we suffer, we need support, but those who live with us do to, but it must be given by them in order for us to give it back, without their support we simply will not be strong or well enough, if you have a good partner, keep hold of them, it must be hard to live with a CRPS sufferer, so remember to give a little back when you are feeling well, but also remember, you do not owe them, if they truly love you they will be there for you and their reward will be to see you recover faster with the love they give
My advice to anyone living or sharing a life with a CRPS sufferer is, listen to them, if they need to be held when the times are bad, hold that person, give them the strength and support they need, if they ask for space, give it them, but do not feel rejected, and don’t wait to be asked for a hug, offer it and when the time is right it will be accepted gratefully, as sufferers we get grumpy when times are bad, and we lash out at the people we love, it is not personal, when the pain is so bad you simply can’t think straight, we are not rational, but this is what CRPS does to you, it is a cruel and punishing condition.
As sufferers we also need to listen, but more often than not, we are not told by the ones we love how they feel, the time must be right to talk, when you feel well, ask the question, is there anything you want to talk about, anything you want me to try and explain?
A New Chapter in My Life
My SCS was working well for me until I was rear ended in my car which displaced the electrode in my spine, after several unsuccessful attempts to move it back into position, I was sent to see a neuro surgeon and it was decided that I needed to have an SCS with a surgical lead fitted. The recovery from this operation was long and hard, especially as I now live on my own, but I had good friends and family round me to help, I think the hardest part of the recovery was not seeing Fergus for 3 weeks, there was simply no way I could look after him, so the fairest thing I could do for him was to kennel him.
I am now fully recovered and life has moved on, but not just moved on, my life has started all over again. It’s funny how sometimes things that you don’t think as important, things you think won’t change anything actually do. When I put my claim in for the accident which had inflicted CRPS on me, it was done as a matter of course, as I was always saying ‘the money won’t change anything’, but it did, I was given a solicitor through my insurance company, and it wasn’t long before I realised they had no idea about chronic pain, and I looked for a new solicitor, mainly because I was sick of their incompetence and the stress of dealing with them was exacerbating my pain, it was a real weight off my shoulders when I met up with Brian Barr who got me a substantial claim result, at the time it didn’t really matter to me, I still had CRPS! But it was to prove invaluable when I had to buy a home on my own, it means I have no mortgage which in turn takes the pressure off me a little on the money front when I struggle to work.
As soon as I was fit enough I went back to instructing, it was good to be back with my class of doggies, it was hard at first, very tiring, but the one thing that we must all realise, it is that only us who can shape our future, we must decide whether Chronic pain will rule our lives or simply just be a part of our it. I have chosen to live with pain and to make the most of every second, it still makes me laugh when people get cross with me for, in their eyes, ‘doing too much’ a favourite comment is . . . . look what you’ve done to yourself, you’re tired and in pain, I understand it’s because they care and that it is hard to understand my philosophy of life now,
But I need to Live.
I don’t look at it the way others do, what I see is what I have done, what I have achieved before I simply can do no more, this, for me, makes it easier to bare the increased pain levels I feel, and/or the exhaustion, but while I am doing enjoyable things my mind is occupied, so I am not focusing on my pain and while I’m doing energetic exhilarating things I am getting fitter and the adrenalin overrides the pain.
Studies have been done to show that when you do things that are enjoyable and make you feel happy the dopamines that are produced by your brain block pain signals
Sufferers of Chronic pain need to get a work life balance, we need to be able to do the things we need to ie: work, housework, shopping etc but we also need to realise it is as important to make time to do enjoyable things, do things that are just for us, getting a work life balance is not easy as we never really know when are pain levels are going to increase, yes we know factors that trigger pain and we can avoid them when we have planned to do pleasurable things, but there are things out of our control that will trigger pain i.e. stress, changes in weather or just our bodies deciding to increase the pain etc. so what we need to remember is that we are not super women/men.
Sometimes we need to say . . . . . "Today I am gonna wear my knickers on the inside and put my cape away"
We cannot do everything at once, we need to take it easy BEFORE we plan to do good things this means there is a better chance that our pain levels will be lower and we will be able to go out to the pub, do a sport we enjoy or simply spend time with people, be relaxed and have fun. This is when we have to realise that yes, the housework can wait!
When I was on the PDTI course I was introduced to Flyball, an amazing sport, it’s like relay racing for doggies, I have recently joined the Muskerhounds team with Manda, who I met on the course (she is one of the instructors) and who introduced me to flyball, if you’d like to know more check out www.muskerhoundsflyballteam.com. Something I’ve always been is competitive and fun loving, so Flyball is perfect for me, plus Fergus adores it, Jayda my new rescue dog is also starting to take to it, now she’s getting the idea of it! The beauty of this sport and the team I’m now with is that I can compete and train when I’m well enough, but even when I am struggling can still be a part of it by holding the spare dogs for team members when I’m not able to run Fergus or simply being in the arena supporting my team. Being part of a team is also helping me learn to ask for help, something we should all do!
It is as simple as asking for help holding my dog, but for me to do this is a massive step, I’m finally starting to admit and accept that sometimes I need help, I still cry sometimes, still get angry and still ask ‘why me?’ but now with help I am learning to make the most of the good days, I still put on a brave face, and am still embarrassed about the fact I cannot do or struggle to do some things, this is mainly due to people that simply don’t understand, the people who, when you try to explain that you are so exhausted from the pain you can’t do something they reply ‘I’m tired as well, I’ve had a long day at work’. But I’m learning to obliterate these people from my life and surround myself with people who try to understand or do understand or simply care enough to simply believe you and ask what they can do to help.
So where am I at as regards my treatment and the future?
I have just been to see my new consultant, my old one left, after being told by a pain nurse 6 months ago there was nothing more they can do for me, which devastated me, it turns out that that is not the case! Although it is true that there is nothing more they can do for me surgically, there are plenty more drugs that we have still not tried, so at present I am starting on some new meds and if they don’t help or don’t suit me because of side effects then we will work through the list.
So I learned a valuable lesson . . . . .
Don’t sit back and just accept what you are told sometimes, ask the question, are you sure there is not something else we could try? also I will now insist on seeing my consultant more, rather than a pain nurse, pain nurses are good but do not have the ability to change you meds and obviously do not know as much as consultants. So I am now more hopeful they will be able to stabilise my pain so I don’t get the peeks and drops, if we can get it on an even level it will be much easier to live my life and live with pain.
Helping Yourself
When we think about pain management we think about medication and surgical procedures, but there are other ways to manage your pain, some I have tried and some I am still exploring, but the key to managing your pain is to try to help yourself, you can compliment the drugs and surgical procedures with many things, and you never know, you may find something that helps, I find using other things to manage my pain most useful in periods of flare ups of pain, at times when you need that little something extra to help you through ‘the bad times’.
"Set realistic goals, concentrate on what you have achieved and not what you have not achieved"