Sharon Lawson For the last ten years, I have endured chronic pain from left-sided spasticity following a brain haemorrhage and fibromyalgia. It began when I was twenty years old and life since then has been a constant physical and emotional battle. Friends slowly disappeared; I lost my much-loved job and eventually even the will to live. Life ahead seemed a black nothing.

For the last ten years, I have endured chronic pain from left-sided spasticity following a brain haemorrhage and fibromyalgia. It began when I was twenty years old and life since then has been a constant physical and emotional battle. Friends slowly disappeared; I lost my much-loved job and eventually even the will to live. Life ahead seemed a black nothing.

n the year 2000, I decided to attend a fibromyalgia support group at the Royal Free Hospital, London. The meeting was very helpful knowing I wasn’t the only sufferer and an attractive man caught my eye too! I was keen to keep in contact with a member of the group for support and my mum cunningly gave Bernard Lawson my address. Bernie and I corresponded for some time before eventually meeting up for a meal and a chat. Six years later, we are now happily married and I am blessed to be with such a special person with the unfortunate bonus of being fully understanding - Bernie sadly has fibromyalgia and M.E.

Although I am very happy in my marriage, life is certainly no bed of roses. There are so many daily toils to struggle through, even getting up can be a big effort. My pains didn't improve even with very strong medication and I began to sink mentally once again. After many frustrating months and hospital visits, I eventually had an appointment with a more understanding pain management consultant at St Thomas’ Hospital, London. He suggested I attend the four week INPUT Pain Management course. At first I was pessimistic due to the years of difficulties with the medical world but I decided I had nothing to lose by trying it.

The course involved a group of male and female patients of different ages who each have chronic pain. There was quite a surprising similarity in the group’s collective psychology. Our thoughts, feelings, expectations, etc, were very similar for each of us at some stage during our journey. The residential course involved a set daily routine from 08:30 to 17:00, Monday to Thursday with weekends spent at home to put our new strategies into practice. The areas looked at were psychology, physiotherapy, occupational therapy, and medication review.

Psychology

I had some issues with how people had treated me in the past and I needed a bit of anger management because of frustrations with so many aspects of life. The psychology talks on both group and one-to-one basis were very helpful and voicing our feelings was incredibly therapeutic. Learning better communication skills, anger management, understanding of thoughts and feelings and constructively re-assessing our thoughts were brilliant tools in enabling me to become more optimistic and better equipped to express myself to friends and family. What I learned, I shared with my friends and family to allow them better understanding and communication. Very important!

Physiotherapy

This was initially a difficult area for all of us. We had all got into a surprisingly damaging physical rut. Avoidance of trying things by telling ourselves, “it will hurt”. We were encouraged to learn to mobilise our appallingly stiff joints and muscles with basic all-over stretches and strengthening exercises but were rebellious at first! I thought no way will I do that; it will flare me up! But I tried it at the lowest level of exertion and realised that it didn’t hurt and wasn’t causing further damage. The key is pacing yourself and just dipping your toe in the water, not jumping in at the deep end and making your pain worse. People without chronic pain would hurt themselves too. Over the four weeks, we all paced our exercises to our own individual levels that we’d manage even on a bad day. I still do my little routines most days and the key to motivation is thinking of the benefits: your bones will no longer lose their density and your muscles will no longer waste! Plus my stomach may get flatter too! It was a shocker to learn exactly what inactivity does to the body. My FMS pain is still present but I feel less stiff. You can only TRY.

Occupational Therapy

This part of the programme was helpful in teaching me the art of pacing certain everyday activities, walking, sitting, kneeling, etc, so that I didn’t overdo things. I was taught to rest every twenty minutes while out and position change more while lying down or sitting to help prevent stiffness. I enjoyed a day out in Covent Garden with a dear friend the other day far more than I would have before I learned to pace. Of course, I don’t always pace. Sometimes we want something done and out of the way so overdo it! I’ll learn soon enough.

Medication Review

A specialist nurse took note of our medication and discussed the side-effects and how they work. I realised that some of my medication wasn’t actually helping at all. I just took them out of habit with no benefit. I cut down on three of my medications; felt no difference and even feel a bit better for it. I’m not as mentally sluggish or constipated! It is worth considering the pros and cons of your medication. Admittedly, I was reluctant to decrease any at first thinking the pain will worsen but surprisingly it didn’t.

In conclusion, I came out of INPUT feeling a huge weight had been lifted off me in so many ways. I felt more knowledgeable of pain mechanics, healing processes, central nervous system damage, ‘bad’ chemical imbalances, psychological strategies, expectations and more, which greatly helped me accept my predicament and manage life that bit better, enough to change the darkness ahead into light. It will not cure your pain and it may not be right for everybody, I fully understand that, but I strongly urge anyone in chronic pain who feel they are trapped to discuss INPUT with their GPs and consider attending.

13.Nov.10

Fundraising Members Evening

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