A few blogs ago I explained how a group of IBM sufferers had approached me re joining their group. They asked for a brief summary of the development of my condition. Here it is. Other followers of my blog have likewise asked about my condition. So I decided to make it available.
Over the last few days I’ve had friends, Geoff, Pam, Brian and Colin call. All have said ‘I look well’. Colin added ‘indeed cheerful.’ I preface this account with this fact for when I read it through it is gloomy.
For nearly a decade I kept a diary. Here’s an excerpt from 8 July 2003: ‘The causes are many but I find my energy and stamina alarmingly reduced. I have never bounced back properly from the pneumonia and last year’s stressful job didn’t help. [The job - eleven months as Interim Director of the newly formed Teachers Council]. I found the last [European] trip so demanding in terms of energy and stress. People age differently. I regret the loss of my physical strength very much but it is happening.’
It is the first indication of the onset of my muscular degenerative condition. I find increasing references after that. My assumption at the time was that this was old age. It seemed premature but it was happening. I found it harder to visit friends who lived up steep paths and when gardening frequently rested because of a lack of energy.
Visiting Auckland I went swimming with friends in Brown’s Bay. A few strokes and I pulled up puffing. Out of practice and old age onset I decided so I paddled around rather than swam. I’m told water resistance is an early indicator of the disease.
Then in 2005 I began experiencing dizzy spells. They played round with my blood pressure medication but in time diagnosed that I needed a pacemaker. That was implanted in October of that year. With an adjustment of medication the dizziness stopped. But a medical side-effect was an irritating eczema on my back, arms and legs. I have had to put a cream on daily ever since.
I became increasingly concerned at how hard it was to garden. I also had three falls, which I put down to carelessness and clumsiness. Anne and I talked it over – the section was getting too big for me, so we would down-size. We bought a townhouse with a small section – I still envisaged pottering in the garden – and put our place on the market.
We went off to a family wedding in Rotorua. For the first time I found country driving wearing. [I’ve loved country driving all my adult life]. We went to the hot pools and I found it alarmingly difficult to move when fully immersed. That scared me. We went on to Ohope for a beach holiday. Energy levels were so low I merely sat on the beach, read and watched cricket on TV. On the drive home on the Foxton straight I sensed it would be the last time I would drive along that stretch. And so it has proved.
The house sold, we made arrangements to stay with friends until our townhouse became available. I found the process of packing very stressful. On the last day I did not feel well. That evening a severe nose bleed suddenly began. It wouldn’t stop, so alarmed, we rang for an ambulance. As we drove away the medic took my blood pressure and couldn’t believe how high it was. Very soon I was in emergency, where they managed to stop the nose bleed and stabilised the blood pressure, which they think caused the bleed. But they also discovered that my oxygen level was dramatically low.
In the long run, traumatic, dramatic as all that was, it put me into the system. They explained to me that I was indeed short of oxygen – “It’s as if you were doing everything at the top of Everest with no oxygen”, a doctor said. But they gave me tests of every shape and size and I became aware that they were focusing on arm and leg muscles as well as lung capacity.
Further stints in hospital and further tests resulted in a two-fold diagnosis. There were two problems. The odds were that they were linked. There were a few instances overseas of the linkage and of course if the muscles are not getting enough oxygen it affects their functioning. A muscle biopsy revealed inclusion body myositis (IBM) – a rare incurable muscular degenerative disease. Bowen Sleep Clinic tests revealed a form of apnoea whereby I stopped breathing. They gave me a CPAP machine to assist me to breathe when sleeping and an oxygen converter to make sure I got extra oxygen at night.
It took a while to get accustomed to the mask. I had to learn to sleep on my back. In my third stint in hospital a nurse put the mask on too forcibly and broke the skin on the bridge of my nose. That became infected and the bacteria resisted the anti-biotic that was being prescribed. This meant a skin graft. Now that this has settled down I am having a satisfactory night’s sleep and the six monthly checks show the oxygen level is normal. But my lungs operate about 40% below capacity.
The IBM progresses slowly. During my first stint in hospital they taught me to walk with a stick. I’ve had five falls since diagnosis. No bones broken. Skin peeled back. Confidence weakened and body left all shaken. District Nurses and physiotherapists marvellous. I now have a walker. That helps confidence for I am very frail and tottery. Eventually a wheel-chair - that will be another concession or progression, it depends on how you look at it. It feels like a creeping second childhood. I am increasingly dependent upon others. I don’t like that. But beggars can’t be choosers.
Occupational therapists have made arrangements for a wet shower to be put it in some time soon. Nutritionists have looked at my swallowing problems. They have prescribed high fibre Fortisip a nutritional supplement to make sure I’m getting sufficient vitamins etc. Indeed, my weight has gone up a little with this addition to my diet. Orthotics have given me a simple device to assist the foot drop of my right foot. It’s helped my confidence
A caregiver comes to shower me and to assist me to go for a walk. I cannot put on socks or shoes and of course cannot put the ointment on my back. Dressing the rest of me on my own takes ages. I do undress at night but that’s a slow process. I gave up driving at the end of 2008 – a huge wrench but an essential safety decision. The day I found my leg muscles did not respond to the brain’s orders quickly enough was frightening. I do not cook – I don’t trust muscles to carry weight, especially hot dishes, but anything, I suddenly lose power. [We used to do week and week about cooking]. I can’t put out the rubbish. I can’t feed the cat. I can’t use scissors. I find visiting friends difficult – access, chairs and toilet seats too low and I cannot get out of them. Even putting on my dressing gown leaves me huffing and puffing. So far I’ve managed that task each morning. If I drop something on the floor I have a grabber to recover it for I cannot reach that low. I cannot reach the top book shelves.
My problems are compounded by the fact that all my life I’ve suffered from a form of irritable bowel syndrome. Nervous in origin. Over the years I’d learnt to manage it but since the onset of the other problems it’s got worst again. It’s another reason why I’m reluctant to visit or to take a car trip around Wellington.
It’s been very tough on my wife and partner Anne. She has had to become sole cook and bottle washer, and of necessity a caregiver. Moreover, she has lost a travelling companion, and someone to dine out or go to shows and movies with. We used to be invited out as a twosome. Somehow, someone solo, but with a dependent, is treated differently.
Early on I realised I had two alternatives. One was to turn sour and grumpy, life’s unfair. The other, was to try to utilise what facilities and faculties I could. The computer’s marvellous. DVDs bring entertainment into my life. Friends have been marvellously generous with time. Reading is a solace, Bird-watching, (the rosella pair were eating acorns on the lawn yesterday), nature watching (camellias budding up and daphne flower-heads pinkening), sky-watching. Over the years I have become a writer – that has become a great help, creativity and contact. As Mum said, ‘you can only play with the cards you’ve been dealt.’
After my diagnosis my niece Jenny who was living in Wellington helped me fly to Christchurch. She drove me to Ashburton to see my 95 year-old mother. It was my last visit to the mainland and the last time I saw Mum. She died last year aged 97. We had agreed neither of us would go to the other’s funeral. Anne represented me. But a trivial memory of that plane trip is that when somebody opened the overhead locker my stick fell out. My reflex action was instantaneous. My right arm shot up and I caught it steadily. Jenny, a very co-ordinated young woman was impressed. So was I. The human body is a strange organism.
The 2018 Book Council Lecture
2 days ago