Blindness revisited, or how MS can spring up and mess with you just when you thought you were coping...

Okay, MS, I've got your number. I know you will make me tired, you'll give me muscle spasms, you'll eat away at my concentration like a deranged rodent. I know some days I'll feel so good people will look at my disabled sticker and mumble and gesture. I'll spring gaily along, overcommitting and overdoing because on good days I am almost manic, trying to crowd in as much as I can.

I know other days kids will offer to help me  as I bend over my rollator. Kids. Of six and seven. And old people will hold open the door for me, offer to carry stuff, fret about me. And I'll spend half the day lying on my couch with the cat kneading me anxiously.

But Cheesus Murphy, as the excellent Kitchener restaurant would say, DON'T TAKE ME F-ing EYES!

It's bad enough about the brain. I spent years and countless thousands educating it and for what? So I can misunderstand simple knitting patterns and never find my glasses? Honestly. If I had that tuition money back I'd spend it travelling the world while I still could, going to Africa and Madagascar and New Zealand and everywhere. Of course, hindsight is 20-20, unlike current sight.

Which brings me to yesterday. I've been having problems seeing for a while now - blurring vision, glasses don't work, etc, etc. I've become used to seeing things with furry edges. I now can no longer read small things without glasses - I'd blame it on age, but it's been a sudden transition, over the past few weeks.

Yesterday, though, I had a recurrence of what sent me to the hospital the first time five years ago - a creeping in of goo from the right side of my head, covering my vision, enclosing me in a swampy impenetrable fog.
Last time, it swept across both eyes, giving me intense claustrophobia. It came, lingered, left. Came back. Sent me to the hospital. Hung around a bit more, left me again.

Last evening, it crept in again, like a migraine aura, oozing in from the upper right corner of my eye, creeping ever so slowly until half my right eye vision was obliterated.

I thought I handled it well. I mentioned it to my companion, quickly, not lingering, in case I was having a stroke and he'd have to spring into action and do something with me. Like a distant foghorn. We continued chatting and working, and I quelled my panic. As with most MS things, there is little that can be done, when it comes right down to it. If I lose my vision, that's it. There's treatment with steroids, which shortens attacks, but really doesn't help with progression. If the bottom drops out of 'er, as they say, it drops out.

It came back, thank heavens and the gods above and all that is good and right in this world.

But it leaves me a little bit more frightened, a little bit more wary, a little bit in dread.
Sometimes I forget I have a progressive disease. I adjust to my current function, think it will always be thus. And then...

And then...

It's fucking terrifying.

What now?

So here I sits, like the cat videos, me in a box. A box made of certain limitations, certain walls, some openings, some slides and ladders.

I'm not limited enough that most of my day is spent dealing with my MS, and for that I am absurdly grateful.
I AM limited enough that a large proportion of my day is affected by my MS, and for that, well, I am grumpy.
I have had to retire, from an interesting and challenging career. I left work at 50, after staying home with my kids while we moved around for years for my husband's career. I don't begrudge staying home with the kids. I don't even begrudge moving around. But I feel as if I haven't had a chance to show my abilities yet. It's frustrating to get to a place where things were interesting and then find myself unable to do them anymore. And five years in, I'm starting to wonder what lies ahead.

I had a lot of fun working, using my creative mind on problems. I made a lot of mistakes, I had a few successes, I LIKED it. And then I couldn't do it, I couldn't remember what I was doing, I was so tired I could barely walk, I became hyperemotional and had a breakdown from the disease.

It's more common than you at first hear. I should have known, when I was diagnosed with depression, that my brain was wearing out. I've never been depressed in my life. Until MS came along. Now it's something I battle daily, along with fatigue and pain and decreased mobility.

But I'm young yet. I'm just 55. With luck I have another 25-30 years ahead of me - to do WHAT? There are only so many crafts. I've tried writing, I don't have the mental stamina for it. I volunteer, and I can continue to do that, provided I can have a nap regularly. But is it enough?

I don't know. I search on, looking for some way to make some sort of contribution.