When I see people I haven’t seen for a while they often ask “how’s
your health?” which is so kind- and I am so glad that I can honestly answer “I’m
really well, thanks!” Saying that, it’s been quite a journey since I last
wrote. So here is an update…
In my last post, I spoke about my MS diagnosis in July 2017.
I was really taken aback by the diagnosis, as I had been feeling so well, and
in particular I felt like I had really dodged the bullet of a relapse after
pregnancy (which can be common). When my neurologist gave me the diagnosis, he
advised that I should start medication. I was hesitant. I felt so well, and
believed that my diet and lifestyle had enabled me to feel healthy and in
control of my symptoms, and also the potential side effects of the various
medications were quite scary to me.
But just two months after my last post I was experiencing
what would become the first of three relapses within six months. The first was
a strange off-balance sensation of drunkenness, the second was a deadness in my
leg, and the third and most scary was double vision (reminiscent of my first
ever symptoms, but in the other eye). I resisted the medication route as much
as I could, but by the time my vision went double I was begging the nursing
team for an appointment to begin injecting myself with Copaxone. I thought
about writing down my thoughts at the time, but honestly I was feeling so
scared about the frequent symptoms, and also feeling like a failure in the
sense that I had not been able to overcome this disease with diet and lifestyle
alone.
Today marks almost a year since I’ve been taking Copaxone
(and its generic form Brabio), injecting myself three times weekly. You may know about
my needle phobia (not even got my ears pierced and a frequent fainter at the
sight of a needle) so that was quite a hurdle to overcome! Nick has been an
incredible help in injecting me in harder-to-reach spots, and also making a
joke about it all J
I’ve not given up on my diet- in fact my neurologist even advised that I
continue with it as he also believed that it was helping to manage symptoms.
Mostly I have been totally well since March 2018, with the
odd strange feeling here and there. Recently I have had a couple of winter
colds, which has coincided with some old symptoms flaring up again. The worst
thing about the injections (apart from the injecting itself!) is the bruising
all over my arms, legs and bottom. The extent of the bruising has made me
consider changing my medication, as it is getting difficult to find a clear
spot for a new injection. I still find the medication options such an
overwhelming situation to be in. The nature of MS is so unknown. Mostly I am totally
well and you would never know to look at me what might be going on within my
nervous system. But at the same time, there is a chance that this disease can
spark so much (potentially life-changing) damage, if I am able to avoid that wouldn’t
I want to? I find it almost impossible to make sense of it and to weigh up the known risks of medication against the fairly unknown future symptoms.
For now, what I wrote before about being grateful still
stands. The whole experience has made me much more focused about the life I
want to lead and a greater sense of urgency around the impact I want to have on this world. Every night Nick, our
daughters and I say “thank you prayers” listing various things we are grateful
for that day. This is one of my favourite parts of the day (especially when the
girls are thankful for eating chocolate cake!) and reminds me that there is just
so much for which to be grateful
Two things I am
grateful for (most of the time!)
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