Harriet's Story

My experience with chronic pain - Harriet Robinson.

So, I am sitting down to write this thinking how I can sum up my chronic pain, it has been the biggest thing that has ever happened to me. I started having foot problems on 2nd February 2009. I had an appointment the next day to get a cast off my wrist which I had fractured so I got my foot checked then. I had an x ray and they didn't find anything wrong, I was then booked for an MRI scan about 6 weeks later. I was given an air boot cast and crutches and told to keep my weight off my foot. While waiting for my MRI scan I had the misfortune of breaking my other foot and using a wheelchair for a couple of months. The MRI scan showed two minor fractures and excess liquid in the bone, it wasn't long before I was cleared to walk on my foot although I still had severe pain in my foot. Over the year and a half from my foot pain starting I had many issues with my feet and ankles. I had what I now know as a pain reaction in my left ankle and the side of my left foot, I repeatedly had the same problem with my right foot, both in the ball and the side. I spent most of that time on crutches. While this was going on I started feeling pain in the right side of my abdomen. I still don't know for definite what caused that pain to start with but it was probably prolonged use of crutches and wheelchairs. Again I went through many scans of all the organs in that area and they couldn't find anything wrong.

It was a month before my 13th birthday that I had the first problems with my foot and it was summer when I was 14 that it was first suggested I may have chronic pain. It took a year and a half of pain lasting longer than injuries before it was spotted. My first treatment to help me live with pain was in my local hospital. I spent two weeks summer 2010 when I was finishing year 9 in hospital doing intensive physiotherapy and hydrotherapy. When I went in I couldn't put any weight through my foot, by the end of the week I was walking slowly short distances and by the end of the two weeks I was walking further, but still in a lot of pain. It was then that I was first told my pain may never go away. The issue is when you don't use your any part of your body for a long time, like I did with my feet; it causes them to become hyper sensitive. This meant even stroking a feather in my foot caused severe pain. Over the next year I kept having physiotherapy and seeing doctors. It was then that I heard about the adolescent pain management course in Bath. What Southampton gave me was great, but they didn't have a pain clinic for children and so gave me what they could but the Bath course is the only one of its kind as far as I know of. My mum spent ages persuading the NHS that I did need to go as the adult pain clinic wouldn't treat me.

Eventually in September 2011, when I was 15, I attended the 3 week course fully funded by the NHS. This was the most important medical thing in helping me learn to live with pain. They helped me raise my physical ability, be aware of my pain, how to gradually come off painkillers and also had sessions on getting the help I needed from school. The course was not just for me, it is designed for parents as well. My mum came with me and the parents had sessions both with us there and in our own. Over the next year I raised my physical activity and came completely off painkillers. This was a huge step; I started learning to live with pain as I learnt to live with it my life became more normal.

Before I learnt to live with pain I was taking a lot of painkillers. I was taking 12 tablets every day, 3 different types of painkillers as well as medication to stop side effects. I already had migraines in the past but with all the painkillers I started getting more regular headaches. Also every time I got ill I couldn't take anything as I was already on so many painkillers. One question I get asked a lot with my pain is why you can’t always take painkillers. For me, firstly the negative side effects meant I couldn't live my life properly; I was constantly drowsy, tired and unable to concentrate. As well as this every time I was ill, even minor illnesses, I had to stay in bed as I couldn't take any medication to alleviate the symptoms due to the amount of painkillers I was already taking. Finally painkillers have the ability over a long time to damage your body, for example I had to take tablets to line my stomach so that the painkillers wouldn't damage it. Living on painkillers was never a long term option but cutting down of them was so difficult. I wasn't addicted but I did rely on them to function day to day. When first diagnosed with chronic pain I could just about manage 3 days a week at school and orchestra rehearsals, through the year I managed to attend school full time but I could only do that with my painkillers by building up my activity level. So to reduce my painkillers I had to gradually take less, even though the pain hadn't changed. I was in constant pain but I just had to deal with it, accept it and keep going. It took me a year to stop taking them regularly and even then I still took them often on bad days.

The impact not having to rely on painkillers has had is huge. Now if I have a bad day I can take painkillers and still function. It allows me flexibility to manage my pain on a day to day basis, judging how bad it is. This awareness of my pain was really important in learning to manage my pain in the long term.

So that is a general account of my diagnosis and treatment but that is only was small part of how pain affected me. It had a huge impact on all areas of my life.

The first time I was in hospital in year 9 I was sitting early entry science GCSEs. I was taking painkillers regularly throughout most of year 10 and 11 as well as missing a lot of time because I was in too much pain to travel in. I couldn't do any work outside school times because I was too tired from school. I also couldn't revise for my GCSEs until we went on study leave when exams started as I couldn't work outside of school time. My pain affected my life at school a lot, I had to work really hard and that paid off by getting ok grades. They weren't what I would have got without the pain and that disappointed me but they were what I needed to study A levels. A levels were less affected by my pain as when I started it had been a year since the pain management course in Bath. It still affected the amount of work I could do but I could manage a lot more than before. My school were always incredibly supportive, making sure I had the work I missed and got extended deadlines if I needed them. I was very lucky to have the understanding I did, I may not have got the GCSEs I could have but that doesn't really matter, I got the grades I needed.

Pain affected much more than just school. I am very close with my family. I have a Mum, Dad, and older Brother and older Sister. I have always spent a lot of time with my family; we eat together every evening and did things together at weekends as well as going camping for 2 weeks every summer. Before learning to manage my pain I spent most of my time outside of school asleep, I was very tired all the time. I also often didn't feel like eating and was in a bad mood or miserable. My family saw me at my worst every day, I would push myself to manage school and orchestra rehearsals but that meant when I got home I couldn't do anything. I barely spent time with them, and when we went on holiday the whole thing revolved around what I could manage (we spent our holidays walking in the countryside so the holiday changed completely). This made me feel horrible, I felt like I was always miserable, taking away from my family, always being a pain, I felt bad for what I put them through.

My family were a massive source if support, especially my mum. She took me to most of my doctors’ appointments and physio sessions as she doesn't work. She stayed at home with me on my bad days and brought me painkillers when I couldn't get out of bed. Those days were some of the worst, I would spend all day just lying there not being awake enough to do anything, just in a daze. It is my family who saw me at my worst, for me that was a big thing. I never let people see the full effects of my pain, I wore makeup so I didn't look pale and in pain and I forced myself to walk normally. But I couldn't keep it up. It was at home where everything exploded; I couldn't keep it in or hide it. My family felt the worst of my pain they saw the misery and tears and bad moods. But they also see the biggest changes now I can manage it. They see both the good and the bad, they understand more than anyone else how my pain affected me but letting them in wasn't easy.

Honesty is one of the most important things in managing pain. I really struggled with admitting that I needed help, even to myself. I know that my family and friends will think no less of me if I take painkillers or ask for help, they are very willing to help and want to be there for me and I want them to be there for me. My problem was admitting to myself that I needed help. I tried to manage and keep going and going so that others won't see me as anything other than normal, so that I cannot be defined by my pain. I only started to properly manage my pain when I recognised I did need help sometimes and then I could always manage like other people. I had to accept my pain and accept that it is part of what makes me the individual who I am.

So when managing my pain I didn't just have to learn how to cut down on painkillers and increase my activity I had to accept that pain is part of my identity. I have to be honest about who I am, all of who I am not just the bits I like, to both myself and others. Even when I started being honest with myself it took me a lot longer to be honest with others. Because I hid my pain, I hid what I needed, I hid that I needed help because I did not to want to need help. I overcame this because my mum knew me. She could tell when I needed pain killers even though I couldn't admit it to myself. I never had to learn that honesty with her as she knew me so well. But the most important thing was, if she knew I needed painkillers and couldn't get them she would wait till I asked. She let me take responsibility for what I needed and made me be honest with her and in return she gave me the help I needed. My mum was always there always knew what I needed but always waited until I could be honest with myself and her about needing it. I still struggle with honesty and I probably always will, I am very independent and the group of people I am completely honest to about my pain is very small, but I am learning.

My pain not only had an impact on my family but my friends. I was nearly 13 when I started having problems with my feet and it wasn't until I was 15/16 that I could manage to meet my friends on a Saturday afternoon. I couldn't spend time with them like their other friends could. I was in year 8 and had settled into secondary school and started making new friends, but when I started having problems with my feet these friendships didn't get a chance to develop and I lost them. I was very lucky though I had a few very close friends, one of which I count more as a sister as we have known each other our whole lives. When I couldn't come to school they came to my house to visit me, they made an effort to spend time with me even though it was a struggle. It was this support that really helped me especially at school. I was missing a lot of time and had really bad attendance but school was one of the few places I could manage to spend time with my friends. My friends helped me so much, through small things like carrying my bag when I couldn't manage and big things like going through work I had missed with me. I owe them so much in terms of my education and managing my pain now as well as my emotional state. When with them we didn't really discuss my pain, they were aware of it and what we did outside of school revolved around it but when with them it was an escape. I could feel like a normal teenager just hanging out with my friends.

One of the biggest things that affected my friends and family was joining Southampton youth orchestra when I was 15, in year 10. I had been in the lower two orchestras for a total of 5 years and had been playing the French horn for nearly 7 years. Because of the pain in my abdomen playing the French horn put me in a lot of pain. By joining youth orchestra I chose to give up my whole weekend, we rehearsed on a Saturday morning but I would spend all of Saturday afternoon and Sunday at home resting so I could manage school on Monday. This had a huge affect on my family and friends as it restricted the time I could spend with them. A lot of people don't see why I continued with the horn despite my pain, well the answer to that is I love playing the horn. My pain had taken away time I could spend with my family and friends and taken away my other hobbies, like cycling, swimming etc. This was one of the most important things in managing my pain in terms of my metal state. The way I thought of pain used to hold me back, I saw it as restricting what I did my whole life. I didn't want to let my pain take away my horn playing so I fought my pain to continue playing. It wasn't easy, but it changed my attitude towards pain and that helped me learn to manage it.

Committing to orchestra was one of the best decisions I made. It not only gave me a reason to fight the control pain had on my life, it gave me something I enjoyed doing despite the pain, it allowed me to spend time with friends at rehearsals and gave me the opportunity to go on tour and play in some great places. It was something I looked forward to before my pain and didn't let go of because of my pain.

Learning to manage my pain was like climbing a hill. The first part was the steepest, it looks so difficult and the top is out of sight. Gradually the further up you go the less steep it gets, the easier it is to keep going. You get to the stage where you can turn around and you realise just how high you are and just how far you have come. Then you get to the point where the top is in sight you rush that last distance but fall back because you took it too fast. You get back up and keep going you get to the point you say but realise it was a false peak. Then there is another point that looks like the top, but when you get there it's another false peak. There are lots of times when you think you are nearly there and realise you're not, but you look back on all the false peaks and realise just how many milestones you've crossed. You've come too far to give up now.  Then you get to the final stretch, you can't be sure if it is another false peak but somehow you think it is. You can see normal life, the top of the hill. I am not there yet, but I have claimed the steep part, those first steps on the journey, I have passed many false peaks and although they were difficult to see I wasn't there yet at the time, they were in fact milestones of just how far I had come. I think I am on the final stretch for a normal life. I will probably always have pain but I can manage it. That last stretch for me is managing it at university, away from home where I won't have my mum to help on a bad day. That final stretch is terrifying, but I have come so far and if I push through this last bit I will reach the view at the top - the beauty of normality, of being able to live how I want not how my pain dictates.

So I have told my journey so far with pain but it isn't over yet. I have learnt to manage pain and live a fairly normal life, but I still rely on others a lot. Next year I will be going to university (hopefully in Newcastle) this is another big step in managing my pain. I will be moving to the other end of the country and living away from home. I won't have my mum to give me lifts if I am sore. I could have chosen to stay in Southampton for university and live at home but that wouldn't be what I need. Learning to manage pain is about taking the steps that will be difficult and scary because I know when I come out of university I will not have to rely on people to help me as much, I will still need help but I will be fully independent. Independence is important to me as pain took away so much of it. Not only will I gain independence which I lost but it will be a new start. I live in Southampton surrounded by my friends and family, I have lived there my whole life with the same people around me, but I am not the same person I used to be. Pain made me grow up a lot and it made me a better person, and learning to manage it I have needed this environment, but now I can manage it so want to have the chance at a clean break where people know what I tell them, where I am in complete control. Pain took away my independence and control of my life, it felt like I was in a permanent downward spiral learning to manage it has brought me to a better place but I still don't have full control. So although it seems mad moving so far away, it is giving me a clean slate, a chance to take back the last bit of independence and control of my life that pain took away, and yes I still have pain I always will but it will not define my life.

I will define who I am and where I go. I lost hope of that, I thought pain would decide my future, but it didn't I just had to take back control. It has taken me 4 years to get to this stage and this outlook and it has been horrible and really difficult, but it has in a strange way been good. I have a very close relationship with my friends and family, I have hobbies I love and I have the chance at future I never thought I would. I would never choose for anyone to go through the experiences I have but it has made me who I am and it hasn't only taken away it has given back.

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