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). |
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.
