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Wednesday, 3 October 2012

Philosophising, etc...

So, this year has been even more of a "becoming", "growing up experience" kind of year for me.

It's been just over a year since my diagnosis, and I think now I've come to terms with MS as much as possible. When feeling my worst, I do think there are others worse off than me, and give myself a little telling off for any slight self-pity (no shouting at myself in the mirror, don't worry, I haven't totally lost it yet).

I still maintain that myself and others in similar, worse or even seemingly not as bad situations, have a right to be pissed off regardless. Being pissed off comes more from uncertainty and feeling like I'm being slowed down, when I should be speeding up and enjoying life while I can.

My MS nurse confirmed what I was already thinking, that my MS is more active. The pro, now I'm passed the time period of getting used to my medication, having a relapse means I am now technically eligible for the pill medication. If they did decide to allow me this, it would start off being monitored in hospital for a day, as it can slow my heart rate down (my current one speeds up my heart rate, making me have several "falling and crashing down on the bed" dreams each evening I take the medication), but this medication is apparently more effective. The cons? Highly active Relapsing-Remitting MS? It might sound worse than it could end up being - it might stay the same and not get any worse...who knows.

The uncertainty eats away at me, but if tomorrow I was told with some certainty that things were worse, that would hurt even more (despite it being certain), so I try to keep busy rather than think about it too much. I put on a front, don't break down in front of friends or family, I'd rather be trying to enjoy life as much as I can, as you don't know when it could be cut short.

I'm still trying to get a band together (a practice soon might happen), and revising for my financial exam at work, while still trying to have a creative outlet in music journo writing, but am too tired to do all well at the moment (even if I was well, it'd be a mean feat). This year more than ever, has shown me who matters in my life, before I was ill, I was never a flake, if there was 2 bands I wanted to see in one night, I'd go to both, see as many of my friends as possible. Now, I make arrangements, and often cancel at the last minute, only due to my health - as one minute, I can feel well, the next, full of fatigue and unable to do anything but sleep (for someone that used to say "sleep is for the afterlife - aside from weekend lie ins", it feels crap doing that - but if you have your health you have nothing).

I mentioned in an earlier blog about a friend of mine which sadly passed away, which gave me a kick up the arse to catch up with those I could & try to get a band together, after a couple of months, I realise my fatigue is getting in the way, despite my trying.

Anyway, we hadn't hung out properly in a couple of years, but would always see him around Brighton & on the bus, our last conversation was: "We should meet up for a drink soon." This didn't happen, but I had a dream a few weeks ago, where we were at a house party, having a chat on someones sofa, sharing a bottle of cider, I asked what he was doing here, and he said he was just saying hello, not goodbye, and said "see you later" to everyone. It got me thinking, I don't need to catch up with absolutely everyone I know "just in case", it's not possible, life is life, treasure the memories and the good times - even the good times with those who you might not be friends with now for whatever reason (they all contribute to who we are).

Anyway, a few pints of organic cider as made me more philosophical than usual, so off to bed with me.

Ciao xx

2 comments:

Gav Lehmann said...

Nice blog, well written stuff. I too am in the 'rapidly evolving' relapsing remitting MS boat and I too also put a brave face on things at times.

The good news is though that things can change, I'm on Tysabri atm and have been relapse free for the last 15 months since I started it, I make that one for Gav to about 49 to my MS. As far as the moving forwards in life thing goes, I try to concentrate on the whole living in the moment thing, the now. Life isn't lived in five years, months, weeks or even seconds time, life is lived now.

Jo Hayes said...

Thanks Gav!

Yeah, it's definitely about living for the moment, as things can change pretty quickly with MS (mainly my fatigue!)

I'm seeing the neurologist again in March, so may ask to change meds. I'm hoping for Gilenya, but we'll see!