Now, where was I? Oh yeah...

I have my very own personal sauna.

It's really neat. It doesn't need a fire and some hot coals and water, and it's completely portable and goes everywhere I do - the loo, the video shop, the garden and into bed.

But wait, there's more! Best of all, it's completely free!!

It's very special and not just anyone can have one, you know. Oh no, to have one just like mine you have to fit strict ownership criteria - you have to be prepared to cope with vast amounts of pain and misery, lose your independence, give up your job, stop walking places, take a wide assortment of nasty, destructive and poisonous drugs in an attempt to maintain some semblance of sanity and physical ability in the interim and forgo mixing with the real world on almost any occasion that could be considered a fun social outing. But most importantly, you must have a disease like Multiple Sclerosis.

MS is a nasty and insidious alien that takes up residence without invitation, wreaks havoc and silently destroys anything that might be considered useful in a day-to-day existence; like legs that can walk and stand, cognitive skills, fine motor skills, memory, a reasonable sleep pattern, energy, motivation and an appreciation of the finer things in life like staying awake for more than 3 hours at a time without feeling (and looking) like a zombie.

Did I say the sauna was free? Oops, my bad... it comes with an exorbitant price tag.

Someone has turned the heat up - summer is upon us, a merry season of holidays and bbqs, parties and xmas, socialising with friends, lovers and family, outings with the kids to the beach or the pool... you know, all those neat summery things that people just take for granted as being loads of fun to get stuck right into at every opportunity.

They aren't any fun at all when you have MS. Not a bit of it. Here is a classic scenario that happened just this week;

Irene rings up and says "come to dinner for your birthday".
"It's upstairs" says I. "I can't do 2 flights of stairs".
"S'ok" says she, "we can have it out on the front lawn". Their front lawn is right on the oceanfront and really lovely, by the way. Even when the evening breeze is gently blowing.
"Can't sit outside" says I, "I will get cold".

I think it's called an impasse. We didn't go to dinner.

This is just ONE of the "little" things that people just don't or can't or won't understand - the wide ranging, ordinary, everyday activities and the impact MS has on participating in them.

Number one problem with an invitation like that is I can't walk up stairs without risking a fall and serious injury. That's if my legs will hold me long enough to start the climb in the first place. I really gotta pick my moments to tackle stairs. Problem number two is the simple fact that I don't have an internal thermostat that functions properly. It's bloody gone. I can get hot on a cold day to the point I break out in a sweat. I can get cold on a hot day and start to shiver. Worse, I can be hot on top and cold on the bottom and bloody miserable all over. Last time I got seriously cold, it took a week to warm up and stop shivering and all the muscles in my legs to stop spasming. It doesn't matter whether my temperature has actually risen, or whether my body just perceives it as having risen, I still feel like shit. But it's even worse when my temp does go up - much worse. It only takes a little shift upwards from normal to start my central nervous system breaking down and not functioning right - my legs stop working, they burn like fire, I can't focus my attention (or my eyes at times), I fall asleep without warning, even sitting upright in a chair or driving the car. I feel like utter crap in every cell of my body, but I can't make people understand how truly awful I feel. It's just an excuse not to do something, hell, it even sounds like a pitiful excuse to me and I know how bad it can get before I'm let off the hook and allowed to be sick in peace. Oh God, how I wish for some peace, no hassles, no requirements, just blissful oblivion.

I've been asleep for days. Even after a decent night's sleep (decent for me that is) and all day asleep, I'm still heavy eyed and can't stay awake. And my temp is up - I'm hot and sweaty, can't concentrate on the phone, remember to put the washing on or feed the cats. I'm sweaty and sticky and my head hurts and my eyes are too big for my head and they feel all swollen and sore.

Colin came around the other day - he says to me "how are you"?
"My temp is up" says I.
He says "Why are you under the duvet then"?
I says, "My legs are cold".

He looked at me like I just sprung another brain spring. I guess, to him, I had. Yet he saw one of my high temp spikes, just a few weeks ago when he was here working and I came apart at the seams, I couldn't walk or talk properly, couldn't think straight, had to lie down somewhere quiet. What he didn't see was Adam lying on the bed 10 minutes later cuddling me while I cried and cried because I hurt so bad and felt so bad that I didn't know what to do with myself.

Hardly anyone sees me like that, they tend to make sure they aren't around enough to get caught in that situation, but the poor kids can't avoid it sometimes.

How do I explain that my legs are cold and shaky at the same time my body is hot and sweaty and my brain is fried? How do I make people understand the huge effort it takes just to get dressed and into the car to drive 10 minutes to town? How do I explain how bloody hard it is coping with ordinary stuff, the horrible stress of knowing I have to do something, even something simple like fill in a form or pay the bills, how hard it is just being me for one day, let alone be stuck being me day after day without sounding like a whinging, whining, moaning hypochondriac all the time?

People just switch off, in record time.

It's time to give up, to stop trying to explain how awful I really feel, how frustrating life is, how lacking in pleasure or satisfaction or simple human understanding this alien territory really is, cos really, it doesn't matter whether people can't understand or don't want to understand, the end result is the same - my feelings just simply aren't important any more, nor are my limitations, my needs or my wants.

I'm everyone's pet alien - it's just that no one wants to feed me. I'm too much effort.

Actually, I would have been happy to do without the sauna, if it meant I could keep all the other bits instead. I never did like getting wet, anyway.

Remember: be kind to you hypothalamus, you'll miss that when it's gone.

~~ A day without sunshine is like, night. ~~

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Now, where was I? Oh yeah...

Last time I blogged, I was 39. I'm not 39 anymore.

Now, I am 40.

This is some sort of milestone, I'm just not quite sure what sort of milestone it really is.

It's not the beginning of middle age, cos if we each have a season of three score and ten, I passed that one 5 years ago. They say life begins at 40 - I haven't actually seen a difference, yet. Mind you, it's only been a few days. Perhaps I need to display a bit of patience. If I lived a few thousand years ago, 40 would be really old. I'd look old, walk old, have few teeth left (if any), probably be blind and likely be useless and a complete burden. People didn't live a long time in the Olden Days - their lifestyle and living conditions didn't permit it.

When we are born, we start out life being fed and toileted and carried around and wheeled about in a special vehicle, have our bum wiped and our face cleaned... all that baby stuff that mother's instinctively know how to do for their helpless offspring. Theoretically, by the time you turn 40, you have figured out how to wipe your own bum and walk on your own legs and feet instead of being pushed.

I didn't expect to start my to-be-severley-truncated second 40 years looking at a life that would mimic in the most unkindest fashion the start of the first. That kinda pisses me off, you know what I mean?

Mr Sez likes to go walking. I like to go walking too, I used to do a lot of it in the course of a normal day, pre-MS. These days, my walking usually only traverses the distance from my computer chair to the jug, to the fridge, to the loo, to my bed and some selected points in between. In other words, I don't walk much any more. But, Mr Sez says that he would be happy to go walking with me in my wheelchair (when I get it) and push me wherever we want to go.

I said that knowing him, he would likely push me into a rose bush and tell everyone he gave me flowers as well :-)

I looked in the mirror today. I was not impressed with what I saw, but that's hardly unusual. But what I saw didn't look any different than what I saw on Monday, before I was 40. I don't think I look 40. I don't feel 40 (ok, maybe I feel 65 or 70, but not 40). I don't think I act 40 (whatever acting 40 means) and I don't have fuddy duddy 40 year old values all of a sudden - I've realised that whilst I am now officially OLD (as my sister so eloquently put it, but she should know cos she is 43 1/2) I don't feel any different to what I did at 39, or 35. Well, not mentally, anyway.

So, at this point in my life, I'm looking at getting a new set of wheels, not a pram, something a bit more long term than that. I won't need to learn to walk again, I won't have legs that function to need to learn to walk. That has to save a few bumps and bruises, hmmm. But instead I will have to learn to live without the independence I had for much of the first 40 odd years, learn to let others care for me if there is anyone around who can be bothered. Learn to bite my tongue, take my place at the back of the queue, forgo doing things I want and replace it with a poor second choice - what I can do, instead. I have to learn that my limitations don't mean shit to those around me, that a 40 year old baby on wheels isn't interesting or exciting or necessarily important, that participation is what makes the rest of the world remember my existence and that my existence means very little compared to what it once did, now that I can't participate any more. I have to learn my new place in the world. I cannot expect emotional and physical fidelity or companionship, comfort or acceptance, because I'm always going to be a pain in the bum and a bloody annoyance for someone, somewhere, somehow.

Life doesn't always begin at 40, sometimes it's just the beginning of the end.

I wonder if I have enough time left for a good midlife crisis? Maybe I should start now... whaddya think?

~~ For Sale: Parachute. Only used once, never opened, small stain. ~~

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