Hey there!
I'm back!
Firstly, the story of our time in Russia, undergoing HSCT, is still not quite ready for publication but it will be posted here so I must ask you to please be patient just a little longer - thank you, all will be revealed soon!
Now it’s been a while since I’ve had the urge to write, but this morning I stumbled across something that had me itching toward the keyboard, so … looks like my writer’s block has finally cleared!
So. What was it that had me heading toward the keyboard again?
It was one of those ‘list’ things, where the first letter of every word spells out MULTIPLE SCLEROSIS, and the words used to expand those letters were all pretty awful. You know the lists I mean, they usually look something like this –
Miserable
Uncoordinated
Listless
Tremors
Incontinence
Pain
Lethargy
Eyesight disturbance … and so on …
I’ve never liked those lists. They don’t conjure up happy sunshiny feelings do they? But I’ve shared those lists, and joined in on many a collective wallow online, been a member of many a group of fellow MS wallowers.
Jeez, I’ve had MS for 20 years now. I could write the book. I could.
But it always niggled at me, that people felt inclined to broadcast their misery. The first time I realised that I somehow didn’t fit in (so there you go, I’m definitely miserable! I don’t even fit in!) – well, the first time I realised that, was when I saw fellow MSers saying how annoyed they were at being told they didn’t look sick, and how they looked so good!
And these people were angry about that. Furious even.
I could almost understand that. Like when people expect you to do things that you can’t. You look too good to be unable to do this, or that, or some other thing. I totally get how that would make us mad.
But. I don’t think I ever got angry or annoyed by someone saying that I looked really well. Or saying they’d ‘never know’ if they hadn’t been told. In fact I do recall thanking some of those people (and wondering why there wasn’t some sort of pageant for us MSers, to see who looked the absolute perfectest). Perfectest, that’s not a word, I made it up ok.
Anyway, in a sort of protest I went off in a bit of a huff and typed up my own list, it’s not beautiful or even finished really but I’m going to share it anyway! – here goes …
Ah yes, I love myself a bit hey. 60 years old and I still think I’ll make it some day. I guess what I’m actually saying is, I’m still me. Things are different, the body needs some work and I’m sure the chassis needs realigning, but it’s not all because of MS and even if it was I wouldn’t see much point in sharing my misery.
Yeah of course I’m whinging now, from a different perspective but it’s obvious that I’m not the perfectest. Just thought I’d better point that out.
I reckon I’ll continue to do my best to keep quiet about my miseries - but when I do have a good wallow I’ll do it on my own if that’s ok. Well, my husband will suffer, but that’s what he signed up for. Oh how he’ll laugh at that (yes, I do live dangerously!)
But how about you? Why not make your own list, a list that focuses on your good qualities, or even just a list of things that make you smile? Wouldn’t that be a nice change?
And I’ll leave you here, that’s all for today.
Oh! And of course, when I’m particularly marvellous you’ll hear about it!