The journey to UCL was long and became uncomfortable, but the stimulation definitely toned down my usual nerve pain. I was lucky really that I had been allowed to go, as I am officially the most embarrassing mother and there was great concern in the back of the car that I would
say something awful to the flatmates! My idea of awful and his do vary greatly. I was allowed in th
e flat but Duncan was informed that he wasn’t allowed to leave me – charming! The flatmates, 2 girls and one boy, were all perfectly charming and chatted – I do think the problem is in our stude
nt’s mind……although maybe they were all grimacing after we left!! ha, ha, ha.
The disappointing thing that I found yesterday was that the stimulation didn’t prevent me from losing my left leg as I got out of the car. I am sure that fellow nerve damage sufferers know what I mean when I describe a leg and foot that loses all feeling and just gives way, particularly after a period of sitting. The strangest thing was that whilst I couldn’t feel my foot at all, I was completely aware of the stimulation – parasthesia to use the medical term – within it! Oxymoron or what!
Whilst the realisation that the neurostimulator can only do so much may be tough, it was the right decision to make that journey. There have been so many times over the years that I have been asked why I am pushing myself to do something that seems at odds with a chronic illness, and this is where the double meaning of the “Half a Life” title emerges. When you are in the midst of a chronic illness, in my case constant nerve pain, it is all too easy to give up on life. Those of us at St Thomas’s pain programme earlier this year have lost so much already – lost careers in the room included anaesthetist, horticulturist, barrister, nurse, sculptor – and we are the tip of the iceberg, our careers are just the tip of what we have lost. It can feel like so much of your life has been swept aside in a flurry of failed surgeries, drugs and their side effects, hospital appointments, benefits application forms and appointments and judgements and then appeals, until the day arrives when you don’t recognise the person looking back from the mirror any more. The pain becomes so overwhelming that it is easier to stay at home in pyjamas than to meet a friend for coffee, or attend a meeting, or go for a walk, or do any of the things that made life more than Half a Life.
Whilst I was on the programme, I met more people who had tried to take their own life in the last 12 months than I ever have. We were one of 2 programmes running concurrently: ours for people for whom all other options had failed but who had a condition which might respond to scs, the other a 4 week course for those not quite at the same point or with a pain condition affecting multiple areas of the body. One lady, with fibromyalgia affecting her head, was told by her own sister, a nurse, that “pain is pain – it is all the same, so get over it”. Believe me, it is not! This poor woman has tried to commit suicide twice and was struggling to come to terms with the news that there is no cure for chronic pain. (www.fmauk.org)
One focus of the inpatient programme was the baggage we are carrying that is preventing us from living the life we want to. Some of it is impossible to lose, but there are ways to make it more tolerable – haven’t worked out how I do this with teenagers yet! Some baggage is unhelpful, unwanted or downright destructive and needs to be dumped – but may be difficult to let go. Our state of mind is bound tightly with our physical pain; emotions, expectations, relationships all playing a role. When I was 18 I met a new friend, and he introduced me to his mother. She had been left disabled following a failed epidural years earlier, but had never managed to move her life forward. Now I have empathy and comprehension of her situation, but my overriding memory is still of a sad lady who was always in her dressing gown with a glass of sherry in her hand no matter the time of day. I made Duncan swear that he would never let me become like this – no funny comments here!!
So I continued to organise the school fete, became a governor at one school and a Friends committee member at another, taught myself to make and ice celebration cakes, held coffee mornings and dinner parties. At times it is too much on no sleep. It would be easiest to say “no”, not to take that car journey to drop my son off, but then I wouldn’t be living even the Half life that this illness has left me with. (to follow – page re:Living with Chronic Pain – pain buddies please email me any info you would like included, firstname.lastname@example.org)