It’s 6 months on, which means it’s time for another update to my autobiography of
MS.
The first thing to report is that unfortunately my PA carer Angie didn’t work out
and we mutually agreed to a parting of the ways shortly after the last update was
posted. It wasn’t particularly anyone's fault. It was just our personalities didn’t
mesh. Because of this I’ve run, or is that rolled on, for the last 6 months with
my long standing carers; that’s right-I never let them sit down, I’m an evil slave
driver.
Looking back it wasn’t the ideal situation, as 2016 was not my best year and my brother
was getting more and more psychologically drained working with me, leading to a bit
of a circle of negativity between us, which didn’t help my non-positive reactions
and habits. Fortunately both Vern, Yvonne and Tasha all stepped up to do extra days,
especially from mid-October to mid-December, which helped my brother out a lot and
enabled him to do the care successfully at Christmas, when Vern, Yvonne and Tasha
all took some well-deserved time off.
To strengthen the care team, so that my brother can take the less stressful, well
at least theoretically less stressful, role of backup carer, we have since Christmas
been recruiting. I use the term we have been recruiting because in a sense we still
are, because the recruiting process has not been as simple and straight forward as
we would have hoped.
Starting with the interviews,
Interviewee 1: Did not turn up, no explanation given.
Interviewee 2: Cancelled as got another job elsewhere, fair enough.
Interviewee 3: Cancelled less than an hour before interview.
Interviewee 4: Attended and interviewed.
Interviewee 5: Attended and interviewed.
Following the interviews we appointed interviewee 5 to a 2 day post and interviewee
4 to the position of bank carer, who would be available to cover annual leave and
sickness. Both posts were accepted when offered.
Unfortunately on the first day interviewee 4 was meant to cover annual leave, they
just didn’t turn up, no explanation given, leaving me in the lurch and my brother
having to do 2 days unexpected care. If they had said no they didn’t want this role
then fine, but just not turning up really surprised me as its really rude and could
have left me completely without care at all if I didn’t have such a good family,
plus succeeding in this role would have put them in pole position for a future 2
day role. I don’t understand the attitude where you can do that, I was brought up
to respect people and treat them right, it seems not everyone is, it left me feeling
really pissed off.
Fortunately it’s not all a complete catalogue of disaster as Interviewee 5, Lisa,
has started successfully after being offered the 2 days a week post we were recruiting
to. Additionally as a bonus she also seems to get bizarre random me.
We are still recruiting, as it would be useful to have an additional backup carer
in the team, but it’s not something we’ll rush into as we need to make sure we get
the right reliable person, in the meantime my brother will be able to cover most
leave and sickness as he doesn’t now have a major daily care commitment. My brother
still won’t get off that lightly, and I don’t mean that in the sense that I will
make all my carers sick so that he has to work, I mean it in the sense that I will
still find him things to do, for as well as taking me to hospital appointments etc.
he’ll still have still have to transcribe my new poems for your delectation, do web
updates and get back to working on my book. My book, I promise it will happen one
day but I can’t say when and currently for me keeping my brain active and distracted
doing new poems is more important than getting my book done quickly. It is more important
to get my latest poems up on the web so I can start newer ones because this helps
me stop my brain concentrating on the compulsions I have, rather I can use my brainpower
to more constructive ends. Poems being more constructive because my compulsions tend
to have cumulative negative impact, as they are based on, and reinforce anxiety,
which fuels lack of sleep, which in turn fuels anxiety, in a nasty negative spiral.
I alluded to some of my negative compulsions in my last poem, Sylvie Wright, An Extremely
Stubborn Bitch, primarily the compulsions to burp and eat watermelon. These are both
done to alleviate nausea in my stomach; the feeling of which the doctors have told
me is a learnt behaviour, a compulsion. I find this hard to accept even though more
than once doctor has said this to me. As a result of me not accepting what the doctors
are saying we have to come to one of three conclusions, either that
1. I am wRight and the doctors are individually wrong. This has happened before so
we can’t totally rule it out.
2. I am wRight and doctors are wrong and are deliberately and meanly ganging up on
me to persuade me from the path of burping righteousness.
3. I am wrong and the doctors are right.
Mmm, I wonder which is the most likely, probably that I am wRight, yes definitely
probably that, but just in case it’s not, I’m seeking advice about having compulsive
habits even though I’ve never been known to show those habits in the past; no never,
you have no evidence, I’m wRight, I’m always Mrs wRight.
Continuing on a health theme, I need to update you about my broken leg. We’re now
a year on from when it happened, I can hardly believe it’s been so long, and while
the leg is healing slowly it hasn’t healed enough for me to have been discharged
from the fracture clinic yet. The primary reason that it hasn’t knitted together
fully as of yet is that I never put any weight on it, and pressing weight on leg
bones when walking or standing helps them fuse quicker. I am due for my next progress
check at the fracture clinic in April, when perhaps they’ll say they don’t need to
see me again; here’s hoping. Continuing with leg news, I’m still using the same pot
so no interesting change of pot colour news, I’m afraid.
In regards to my health funding, you will remember that recently I reported to you
that the latest
