Hello
everyone! It's been a while since I've provided an update and it's
also CIDP awareness month, so here we go...
You
may recall that last year I provided some basic information about
CIDP as a kind of public service and recognition of CIDP awareness
month. I'm not going
to do
that again this year but I am going to provide links for the post
from last year and for another post that I did a while ago that
explains what CIDP is all about:
What
I am going to do in this post is give a little bit of a yearly
checkup as to how I am doing. That's right, I've updated my trusty
line graph!
Of
course, I'm more of a wordy person than a picture person so I'm going
to babble
on for
a little while before you can see the graph. I've come a long way
since last May, which is pretty exciting. At least with my lower
half. My hands are not such a rosy story but I can't complain too
much. A year ago I was still relying on the wheelchair any time I
went outside. I could use a walker inside and at
physio and was starting to get brave enough to take it out. Now my
wheelchair serves mostly as a clothing rack. And my walker, well it
lives in the car most
of the
time and is only used
when I go out. In the house I stumble around with nothing but my AFOs
on (well, I also wear
clothes).
I use my cane to get to the car and I'm starting to take it with me
for short ventures to restaurants,
etc.
It's all very exciting.
It's
interesting though when I think about it because a year ago I figured
as long as I was walking without aids that I would be at 85% of my
normal. I'm still using this as a benchmark but it's a little
misleading. What I forgot about in my drive to get out of the chair
is a wee little thing called stamina. Stamina is what enables you to
say walk the length of the mall without even thinking about it. I do
not have this
stamina.
I'm pretty much always
exhausted. And while I am trying to work on my stamina in physio and
through my home exercises, by trying to eat right and sleeping lots,
it's pretty hard to come by.
Then
there's my hands… My hands are a funny beast. I've regained much of
the basic strength that I lost and
my range of motion is fine, the problem is with fine motor skills.
What are fine motor skills you ask? Well insignificant things like
writing, typing, chopping vegetables, using a broom, etc. While I can do these a little, it doesn't take much to cross the line into a horrible spasm/seize-up. I'm trying
to find workarounds like my fancy talk to text software but it's
tricky. I'm still optimistic that the small muscle groups will come back
and I'm hoping my neurologist will have some brilliant advice on
how to speed this up
when I see him next month.
And
now... the graph in all its line-y goodness! I’m using the same
rubric as last year - a completely arbitrary assignment
of mobility and function out of 100. I have set benchmarks for my
legs (walking
with AFOs alone is 85, walking with a cane and AFOs is 75, walking
exclusively with a walker is 70, being able to stand without
assistance is 50). I don’t really have benchmarks for my hands,
but I’m not going above 80 until I can write a few pages with a pen
and chop veggies for dinner all in the same day. If I can knit or
crochet again, that might warrant an 85.
Note:
The little dip in leg mobility in January 2018 was a result of my
bout of sepsis, and not directly caused by CIDP.
That's
where I'm at in a nutshell. Overall I'm feeling pretty good about
things. I'm no longer reacting to my IVIG treatments, which makes me
happier than you can possibly understand. I'm also (dare I say it)
fairly stable at the moment. I'm confident that I will be able to
spend a good amount of time outside this summer and have plans for a
sprawling deck garden.
So
there you have it, my annual
update. It's been a roller coaster year with new unanticipated
challenges but I've met them head-on and I'm still here plugging
away. I guess I didn't really mention all
of the
challenges in this post but you can read through the
archives
if you're interested. I leave you with this lovely picture of me
standing next to the Bibliomatic,
a weird and eccentric random book vending machine that I visited on a
recent short trip to Toronto.
Ciao
for now!
Great update - as usual, full of positive energy. When I saw you recently I could see how much more mobile you were. Hopefully the hands will play ball. Keep kicking ass xoxo
ReplyDeleteToronto????? I am 2 hours away....next time you should let me know and I could pop down for tea!!! Very impressed with your years accomplishments. But not surprised. A ballsy broad like you. Cheers and see you this fall at Celtic colours time.
ReplyDelete