In a message dated 4/30/2006 5:16:35 PM Central Standard Time,
[EMAIL PROTECTED] writes:
Hi,
Thanks so much for all the positive and helpful replies to my
recent
post. Sorry it's taken a while to reply, but I'm still doing
all the
physio and rehab stuff etc. and find I don't have the energy most
times
for much else right now. (Also I hurt my back so couldn't sit
here for
a while). But it really did mean a lot to hear from you
all, and I
appreciate it. :-) I'm seeing my dr tomorrow about
getting on some
antidepressants, so hopefully things may
improve.
I have another question if you don't mind; I've been
pushing myself a
bit hard the last week, and trying so hard to get
mobility. I went out
my backyard (down 8 steps) on crutches,
(clinging on to the banister
mainly), and really hurt my wrists and arms,
because most of my weight
was being carried by them. In the house
I've been able to use a full
forearm support frame, which I carry most of
my weight through my upper
arms, leaning on them and wheeling
forward. It's OK for short time, but
I get very fatigued from
it, and of course, can't use my arms when
using it. My left
leg can't bear any weight at all, and isn't able to
move much, but right
leg can bear some weight for very short time,
before it collapses and
often goes spastic, but it's OK to propel
forward in a full forearm walker
for short 'walks'.
However, my question is this; when I went down
the yard, (and up steps
again on my bottom), I found that I really hurt my
back, and the pain in
my back and left leg also was so severe it was
really hard to cope
with. I also have gotten the bad back pain if I
use the forearm frame
for too long. The pain really limits what I
can do, because it can take
days or even a week or so to recover from it,
and then I'm really stiff
again and have to start from scratch
again. Is this a normal part of
TM? Is there a way of avoiding
that, or working through it? It's hard
for me here, because none of
the doctors (or even my specialist), or
physiotherapists, know much about
TM. Most don't know anything about
it; so not really sure how to
proceed. They're treating it in physio
similar to stroke
patient. The physiotherapist I'm with says she's
never had
anyone with this condition before. It makes it a bit hard.
Is recovery and physio similar to stroke patients? Anyhow; not
blaming
the physiotherapist, because going down my backyard was my
idea - the
physio's have actually been very gentle and careful about
doing stuff.
But I just so badly need to get mobility again,
because I have 7
aviaries in my yard, (it's a fairly large property, so is
a bit of a
trek down there as well). I have been a wildlife carer
for 14yrs now,
and over that time, have taken in quite a number of
unreleasable
animals, and some unwanted pet birds, that are all beautiful
and very
special, have become practically family to me.
But I only have until
June or July before I'll lose them all, if I
can't get down there to
tend to them; as I asked friends and family
to give me that long to
recover, so I wouldn't have to lose them. I
made a roster, and people
come and feed my backyard aviary animals every
day, so they're all still
well cared for. But obviously I
can't expect people to continue to do
this indefinitely. It's been a
huge favour to even ask them to help me
for 6 months! Yet the time
is getting away, and I still am so far from
being able to get out there,
and into aviaries, to look after them all.
It will break my heart to
lose them, and I don't think I'd cope if that
happens. I can't even
be sure of getting good homes for them all; and
I'd need to be sure they'd
all be OK. (This is mainly why I signed
myself out of hospital early
(against medical advice); because I needed
to be sure they were all
OK). I'd started a rare fauna network just
before I became
ill, and we were going to be tracking and helping out
the rare yellow
bellied glider in this area, and also to help monitor
and help with the
koala atlas. (I did a koala care course in November,
a month before
getting TM. All of this I've lost now. I was working
at
Taronga Zoo last year at this time, doing very physical work. I
can't believe that I'm now in a wheelchair unable to walk.
On the positive side; one thing that I haven't lost though, is the
network for Australian wildlife carers, which I run, and do the website
for. At least I can do that whilst disabled. (The
network forum and
website I designed is www.ozark.wild.net.au if anyone is
interested to
have a look. The story about one of the ybg I cared
for is under
'information' -->'discussion' if you were wondering what
they are).
Also; am doing some crafts which help to take away the
huge stress and
depression. It helps a lot. Anyway;
sorry again for the long blurb.
(I'm waiting at present for one of
my 'feeders' to come to do my birds,
but he's not arrived yet; (which is
probably why this is so long!)
Thanks all.
Take care,
and all my best wishes to you all.
Kate
Kate, my dear...
With TM, as well as any other disease, each person has to learn to
listen to your body. It will tell you how much you can and cannot
do. And, it seems like your body has been talking to you, loud and
clear!
I'm not trying to be funny, but being able to laugh at ourselves is
a healthy way of coping with all of the stress of TM.
One of the most difficult but necessary things that we must do is
recognize our limitations. We are different from how we used to
be. And we will learn to accept that fact over time. It's a double
edged sword...because as the same time as we must accept that our bodies have
limitations, we don't want to ever give up on trying to gain new
boundaries.
But, the trick is not to injure ourselves in the process and that
is what it sounds like you are heading for. I can tell you first hand, it
"ain't no fun". I was doing my usual range of motion exercises when I was
stretching out my calf muscles and using very little resistance broke both of
the tibia and fibula bones in both legs. I have been in casts since about
the first week of December and am totally sick over it.
I could go on and on about how it feels, about being stupid and
ignoring my body after listening to it for almost four years, but I
won't.
You take it easy and if you ever need a reminder, let me know and I
will write you another email, sharing the effects of negligence with you.
:>)
Love Ya,
Jude
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