Chronicles of Life with Multiple Sclerosis
Friday night/Saturday morning - 00:35.
I usually take my time over these posts, making sure they make sense before letting them out “in the wild”. I’m pretty self-critical - no, actually, I’m extremely self-critical - and this extends to writing posts. I try not to depress the shit out of you, gentle reader - or me, for that matter. I also try and make sure I’ve got something vaguely interesting to write about before putting finger to keyboard. I haven’t got that vaguely-interesting-something tonight, that “hook” to hang the rest of the post on.
It’s not for lack of anything in the news. Jack Osbourne has recently been diagnosed with MS, presumably Relapsing Remitting MS. I’ve got something swirling about in my head about this but I just can’t get it out. I wish him and his family well for the future. It’s also the end of Carers’ Week in the UK. I’ve not followed enough of the goings-on, even locally, to use it as a subject. I can’t even summon the vitriol to wade into Jimmy Carr, tax avoidance schemes and their knock on effect to welfare services. I’m too preoccupied with what’s going on here.
No, it’s just me burbling tonight. Frankly, I’m trying to find something that’ll make me smile. Because this week has been hard. After taking MW to the dentist, it’s come to light that she’s been struggling to clean her teeth for a while now. One of the first things you’re taught as a child is to clean yourself. Brushing your teeth is one of the basic planks of personal hygiene and now I’m going to start to do this for her. Since MW already has to be assisted to shower, this really shouldn’t come a shock. I mean, it’s a natural progression of the difficulties she has. But assisting is one thing, actually taking over doing a thing entirely is another. I’ve noticed a real difference in her upper body strength for some time now. It’s harder to get MW dressed because she can’t move her body as freely as she could even up to about 4/5 months ago. I know she can tell there’s been a change for the worse recently. I don’t know how she’s going to take to having this done for her. I don’t know how *I’M* going to take to doing it. There’s no manual to cleaning someone else’s teeth, is there? Fuck.
The week started pretty crappily too. Last week, MW had a routine eye-test. She’d realised that her eyesight was deteriorating and thought it was something that could be improved by stronger lenses in her glasses. So, off to the opticians. Half an hour later we’d been told that the optic nerve in her left eye is very, very pale. Her eyesight in that eye has deteriorated to 6/120 when aided with lenses. This scoring puts her at legally blind in that eye (at least, according to information I’ve looked at online). The sight in her right eye is compromised too but not to the same extent. The optician’s advice was to contact the specialist MS nurse with a view to being referred to an ophthalmologist for further tests and remedial action. I rang the MS nurse on Monday. Sadly, she told us that there’d be no referral. The optician’s default setting when they can’t remedy eyesight issues is to refer the client to their GP for further action. In MW’s case, the paleness of the optic nerve is due to nerve damage cause by MS. The damage is untreatable and irreparable. The only thing to do is note the optician’s findings. Double fuck.
So, after all this news, what do I do? Spend tonight looking at Richard Pryor documentaries on YouTube. Breaking my cardinal rule of not Googling this shit because it will fuck with your head. I’ve spent most of tonight crying. Probably because the crap news has kept coming this week and seeing Richard Pryor struggling at the end of his life in a wheelchair made me think of the future. And all I could see was bleak. Another cardinal rule broken. Double teary fuck with bells on.
Jack Osbourne tweeted to the news organisations which have started printing all kinds of horror stories in the wake of his diagnosis. His tweet reads, “Dear journalists…will you please stop sensationalizing my situation to sell ur poorly written magazines and papers. I AM NOT DYING!”. In his case, he’s right - even though worst-case scenarios make for much better stories and paper sales - Jack Osbourne is not dying with MS. But fuck me when MS is progressive, it’s hard to look at the disease and not see darkness.
rethink MS and LIVE WITH BOLDNESS! I would but the cog fog makes rethinking hard and boldness sounds like I’ll end up with bruises that are color corrected for dramatic effect. heh.
(me beng bitchfacery and lame)
For what its worth…
Just know that you’re not alone.
About one month ago I was diagnosed with multiple sclerosis. This is my blog about it.
Receiving such a diagnose is the most brutal experience of my life, and since the health system has proven quite incapable of helping me so far, I hope to achieve at least some therapeutic effect from these writings.
I wish to write about what led up to my diagnosis and how I will attempt to deal with knowing that I will never ever become totally well again. The anxiety of never knowing what will happen and the fear of paralysis and death.
It happened about three months ago when I noticed that the left side of my face had lost some of its feeling. It wasn’t exactly numb, it just felt a bit less sensitive. I shrugged it off and didn’t think too much of it, but after a while I decided to see a doctor nonetheless.
She ran some tests, mostly just basic motor skill exercises, which I passed with flying colors. Trumpet fanfares extravaganza. She did, however, call a neurologist, who advised that we should do more tests at the hospital.
And tests we did. At first I went through an MR scan of my brain. For those who don’t know what that is, you are strapped and sent into a tube for 45 minutes, while magnetic resonance is sent through your brain. After that they examine the charts and numbers (always with the numbers) and call you into an examination.
The first warning sign that something might be wrong was when they didn’t just totally acquit me of everything and send me home with a lollipop.
Instead they told me about the excessive amount of scar tissue they had found on my brain and that further examinations and tests were needed.
Actually four more tests, which I will describe in the next post.
Obviously I did not realize this at the time, but all this was leading up to that crucial point:
Doctor: Dear Sir. Unfortunately, you have sclerosis.
Exit: Life dreams.
Cue: Flood of tears.