I know I know. It's
been an age since I posted. Slap my wrist, and
all that.
However, I feel that
considering how the year has gone my delay is justified. It's been
busy, and emotional, and tiring and just bleergghh. But things look
to be on the up....thank god.
Firstly, the bipolar
meds have finally been tweaked enough that I feel positively 'normal'
(whatever that is!) so I feel like I can draw a bit of a line under
that fiasco. No longer will I be manically obsessing over things, and
being Mrs McTwitchHands. I feel like my personality has come back and
I can see things positively now. I used my manic energy to sew
things, which yes I became obsessed with, but it all culminated in me
selling my wares at a Christmas market this week. I felt like I'd
turned the situation around, and I felt so proud of myself.
Along with this also
comes the new MS development – Tysabri.
Basically It's taken
the best part of 6 months to sort out my treatment after having two
relapses this year. There was a lot of debating and umming and
ahhing, and I finally went with the drug Campath. Except I didn't.
Because someone died who was having it in the MS unit. Awfully sad,
and it made me think twice about the risks of having such a powerful
and long-lasting treatment. Though good in some ways, the fact that I
would have 5 days of nasty infusions then nothing for a year, ended
up filling me with dread. After all, what if I got any bad side
effects? There was nothing that could be done. It's not like I could
stop taking the tablets, or stop the injections.
No, I couldn't do
it. So after Campath, the next option was Tysabri. An infusion once a
month, that lasts an hour, and potentially could reduce relapses by
80%.
Of course, this
treatment also comes with its serious risks. There is a very small
chance of developing a brain infection called PML which can lead to
severe disability and even death. Scary stuff. Though luckily for me,
I don't have an underlying virus called the JC virus. That means my
odds of picking up PML are about 1/10,000. If I'd had the virus that
would have dramatically dropped to 1/1000.
I decided the risk
was worth the benefits (it really is meant to be a great drug), so I
had my infusion last Friday. It was as peachy as someone stabbing you
in the arm ever can be, and it was simple. My MS nurse said, as I'm
rigged up to the drip, it was actually 'enforced rest' for a couple
of hours. True enough...though that does make it sound positively
pleasant. It wasn't. Hey ho though..it could have been a lot worse I
guess. My next infusion is on the 6th January, so I've got
the fun of Christmas and New Year before I get stabbed again.
I heard great things
about how effective Tysabri was from others having the treatment at
the same time, and I have to say I'm seeing benefits already. It may
be psychological, or coincidence, but my walking definitely seems
better. I'm able to walk further without stiffening up, and I'm
getting less achy pain in my legs and less tingling. I should be ecstatic, but I'm too
much of a realist. Surely it can't be that effective?1 Whatever the
reason though, improvement is good. It's looking like 2017 is going
to be a better year.
I will dutifully
keep you posted, and until then. Deck those friggin' halls!
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