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Friday, March 18, 2016

Transverse Myelitis: On Pushing Yourself and Stress

I am now 6 years down the track with my TM, and had to go to the local doctor recently to get some forms filled in for an extension of my Handicapped Parking sticker for my car (which only lasts 5 years). The GP is a kindly gentleman, a few years older than I am, and he has not known me for very long, given I tend to avoid doctors if at all possible. He very gently guided me through the history, and then completed the form; for which I thanked him. When I looked at what he had written. He had filled in one part of the form about the future, with a “Permanent”. I get that this was probably a good thing from the parking authorities point of view, but it really irked me.
It reminded me of my exercise program on my iPhone, which even when I work hard on the indoor bike, or on walks, or business days, still says “Sedentary”. That irks me as well, and has pushed me to try harder. I did seem to have made progress over the last year, and once in a while I do manage to get into the “Lightly Active” category. These programs have no idea how hard it all is…
As I have made progress, I have noticed that if I do some exercise and then follow it with a half hour of good rest, I can often do more exercise. So I do 25 minutes on the bike in the morning, and then perhaps go for a slow walk of 80-1000 metres. I can do that, much to my amusement; and it does not seem to cause problems. In fact I suspect that it is leading to an overall improvement on my physical status (see the iPhone download photo). So from that point of view, I have every intention to keep pushing myself.
A year's worth of slow progress (the reduction during Dec/Jan relates to
having the Christmas holiday in the UK, and eating too much).
 But there is a problem, which seems to be related to how stressed I am feeling. Over the last three months, I have been involved in providing advice to a State Commission of Enquiry, whose initial contact coincided with my final retirement. I was anxious, and felt under threat. I do not think as quickly as I used to. I have largely given up public speaking because it stresses me out, leaving me exhausted by preparation and then for a couple of days afterwards. So after a couple of affidavits trying to make sense of legal language my appearance was last Friday. The drive into town was a trial, meeting with the lawyers was a trial, the walk from one set of offices to another building was a trial (“It’s only about 50 metres” the lawyer said jauntily). Turns out it was 400 metres and then lifts and then some more, all the time feeling tense and under threat. I was on the witness stand for an hour and half. A number of colleagues, as well as my wife, said I did really well answering the questions, and ‘thinking on my feet’ (sitting down, of course).
I have now read the transcript, and agree that I managed well. But I was exhausted afterwards, totally empty, and then I had diarrhoea for the next 36 hours – which exhausted my even further. I am certain that the level of stress, and the diarrhoea are connected; I have noted it in the past. I also had a recurrence of my right sided chest pain, lost sensation in my lower legs for some hours, had problems with my waterworks, and continued to not sleep well for the next few days (having not really slept a restful sleep for many weeks). Of course my exercise regime has suffered, and I am only just beginning to get back into it, now I am sure there is no permanent change. I have continued to have increased episodes of chest pain in the classic place for me (T7 on the right), and sadly this has meant use of some Panadol, and also the TENS machine. Not really a problem, but irritating when you have the sense of having made progress.
The stress has also caused a couple of other minor disasters, as if my brain and body have not yet recovered. Hopefully this will all settle down with time.
So, I conclude that stress is not something that we need when we have Transverse Myelitis. We must accept that it affects mind and body, and may lead to what feels like a minor (or even major) set back. Don’t beat yourself up, and compound it all. Be kind to yourself, and take the time to get back on track. Rest, gentle exercise, mindfulness exercises, good food, good company, reading a good book – do anything that you know has helped in the past.
I suppose the message of this blog, is that pushing yourself is probably OK, as long as you grade it. In the context of stress, do NOT push yourself. Take time to get over that before beginning the journey again.

Good luck.

1 comment:

  1. Hi Graham I heard your interview with Richard Fidler recently and was very impressed and moved by it. Reading your blog, it seems you are making a tremendous effort and steady progress despite the trauma you experienced (as so many do) as a patient in the healthcare system. Don't let the iphone app drag you down or the GP's judgements which are, as you note, designed to satisfy beurocrats. This is the problem with healthcare these days. It's become so beurocratised and so divorced from the human element. There is scant awareness of the importance of connecting with the patient and providing encouragement and validation. One patient told me a nurse had told her recently, in answer to her question "would you mind smiling occasionally?": "I dont have time to smile'. What have we come to?
    I was excited to hear abouf the voice and movement treatment for self harners you spoke about in the Fidler interview. How sad that your colleagues laughed at the idea. It shows how convergent their thinking is. So sad that psychiatry has becone entirely bio-reductionist. History will judge this era of treatment very harshly I suspect. I'm a psych nurse and have a Masters in psychotherapy and I see the damage done every day. .It's good to hear the voice of a psychiatrist with a more philosophical, creative and free thinking mentality. If only there were more like you. But the system is discouraging creative thinkers so that we end up with specialists with all the imagination and existential awareness of bank managers.