And there’s a controversial title before I even begin.
Firstly I should say that disability is not a competition as to who is the most
or the least. Whether you’re wearing an eye patch, using a stick or a chair or
maybe have something completely invisible – it all comes under the same
umbrella term of disability and all are difficult to cope with. My biggest challenge
with my disability is that it is so variable and I often feel that makes it
less believable, even less valid at times. Especially as what I feel that
happens to me is self-inflicted disability, i.e. I do things to cause myself to
become more aware of being disabled.
For example, this weekend Jonny and I chose to clear the
rocks, bricks and wood from bottom of our garden which were left over from us breaking
up the very old and leaky pond 2 years ago. At the time we couldn’t afford a
skip so we just left it all and it’s been a real eye-sore ever since. So we
spent the afternoon lifting heavy chunks of brickwork, breaking stuff up with a
sledgehammer and putting it all into the skip at work. I say putting it in, to
be honest I had good fun ‘shot-putting’ the bricks into the skip, as you do. We
did 3 runs of filling up our van and driving down to the skip before Jonny felt
that he was too tired. Yes my fit, healthy, muscular, carpenter husband felt tired
quicker than I did, wahoo! And it really was a wahoo moment, but I know that in
reality if I wait for my body to tell me that I’m tired then it’s too late. So
what I did was fairly stupid, especially as before we even started, I had
already taught at music school from 9-12:45pm, attended a 1hr meeting
afterwards and driven myself to Oxford and back already that morning.
So we rested for an hour or two in the afternoon before we
walked for 30 minutes to have dinner with our landlord, where we then drank too
much wine and before finally walking another 30 minutes home. The next day I
felt awful unsurprisingly, and even in life pre-MS I probably would’ve spent
the day snoozing and doing very little to recover. But I was on the rota to
lead worship at church, and I felt I’d probably manage it/didn’t want anyone
else to do it, and so got myself up and rehearsed from 10-11am then sang in
church immediately after. I love singing and leading the congregation and it’s
a fairly new skill I’ve acquired but I do find it exhausting. At this point the
fatigue was so bad I couldn’t walk unaided and I had to be helped on and off
the stage and on and off my kitchen stool that I’d had the foresight to pack in
the car that morning. It gives my worship leading a bit of a ‘Westlife’ vibe
but there’s no fear of me standing up at a key change don’t worry! So yes,
tiredness had hit me big time, and when I sat down after belting my heart out
for the first 3 songs, my body did something completely new and pretty freaky and
I had whole body tremors for 15 minutes. Finding yourself rocking forward and
backwards and your head bobbing up and down like the Churchill Dog is a deeply
unpleasant feeling and unfortunately, one I’ll need to make a note of and report
to my nurse I think. Needless to say, Sunday afternoon was spent sleeping out
of necessity, and then we ordered Dominos for dinner.
As a result of those antics, I’m still recovering now. (I
can literally hear so many MS people saying ‘What did you expect?’) Today I’m
not well enough to have a shower unaided, I probably couldn’t cook lunch for
myself without supervision (thankfully I’ve got last night’s pizza in the
fridge though) and I’ve cancelled my private instrumental tuition sessions for
this afternoon because although I’m desperate to teach them, I have to
prioritise getting through the rest of the week. Yes it does serve me right I
suppose, I am a person with MS and we have to pace ourselves. But then again,
should I feel guilty? I didn’t feel tired when I was playfully shot-putting the
bricks into the skip, I still didn’t feel tired when it was time to walk to our
Landlord’s house. In previous weeks I’ve managed to do the Witney Parkrun on
the Saturday (without training), felt exhausted at the time and been absolutely
fine by the Sunday, no fatigue, nothing. So does that mean I CAN use the title
of occasionally disabled? Because it doesn’t seem like one weekend to the next
is the same. I haven’t completed a Parkrun since my first one because I’ve
been working on Saturdays which has been frustrating. My brick moving and
throwing activity this week felt like good exercise to me, and I’m being told
to exercise more, but how can I have the confidence to go for a run etc when it
then takes me two days to recover? MS is and always will be unpredictable, which
is a nightmare in itself, but I can’t exactly quit all work just to try and let
an exercise regime make an impact.
The unpredictability of being occasionally limited in my
mobility etc has stopped me from accessing things to make my life easier. Mainly
because I think I’d feel like a bit of a fraud. Today I need to go to Boots to
pick up some painkillers, but the thought of parking any distance away stops
me, which is where ideally, I would apply for a Blue Badge to enable me to use
disabled spaces and I think it would make a massive difference to me. But then
again, why bother when the next week I’ll probably be able to walk the 500m
from the nearest carpark to get to Boots? Today based on my inability to do
certain tasks, I would comfortably score 9 on a PIP assessment for everyday
living. But 80% of the time I think I’d score closer to a 5, so is it justified?
I know how much the system has been abused and how hard others have had to
fight to receive PIP. Bearing in my mind that my history of disability
assessments has involved me asking occ. health to encourage my boss to stop
wrapping me up in cotton wool and to give me MORE work not less, I can’t see a
PIP assessment proving particularly fruitful…
Assessor: “So Mrs Bownds, how are you on your worst day?”
Claire: “Cross because I haven’t got enough energy to water
all my plants, do a 5km run, make a soup from scratch, make a curry, fix a couple
of flutes, teach a few students, do the shopping… I mean is that really too
much to ask?!”
P.S
I'm really bad at blogging, I didn't ever actually do an update on how Round 2 was and what it involved! I'll work on that asap.
No comments:
Post a Comment