Breathless

The whole world is asleep except me. I have just climbed out of bed; it's after midnight and I am up because I cannot lie there any more. I am aching, I am burning and I can't breathe. I also feel sick and don't dare cough for the pain in my chest.

Remember when you were a kid and you used to get told off for playing with the candles and melting the wax, dribbling it all over your hands and fingers, letting it run across your skin and picking it off later when it was cool and hardened... it was lots of fun. It was not fun gettintg bitched at afterwards for all the bits of wax left lying around.

Tonight my left leg is being repeatedly dipped in molten wax; and before each layer can cool another is being added, and another... each trapping the heat from the one below it, adding to it, growing on it, getting always bigger and hotter and hurting more.

Even the cats have deserted me because I cannot lie still, I toss and turn and disturb them, endlessly.

I don't dare cry; I can hardly breathe now. But I want to, very much. I'm all clogged up, weak like a kitten, so weak I even had trouble holding the electric jug. I hurt at both ends and ache in the middle and I've had all of the meds I can take.

When a nitemare becomes reality
Forests menacing, dark with trees
Monsters fierce and savage beasts
Howling winds from a gentle breeze
A breathless body, tightly choked
Weakness brings me to my knees
Terror beats me down in violent waves
A Kingtide no one, ever, sees

Oh, the monumental arrogance and naivete to assume I could have power and control over my own life.

Shit, I wish that I could sleep.

~~ Sleep after toil, port after stormy seas, ease after war, death after life does greatly please
- Edmund Spenser, 1590 ~~

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Winter

It was a bit of a wintry day, today. Coldish and raining. I was cold and raining, too. And I feel like shit.

I wandered off to the doc in the morning and he pronounced me sick (as he tends to do) and was able to write me a prescription for my next lot of chemo - methotrexate this time, the one I originally asked for all those many, many months ago. Almost twelve months, in fact. The down side is that this is the last one they have to try and it's not rated as being very effective at all, so if it makes no difference, I am on my own. I also have to get better first, so I have to be a good girl and take my antibiotics for the next week to get rid of my sore throat and sore ears and sore chest. But the up side is, I only have to take my chemo once a week and for many people it has few nausea side effects! This could be a good thing. I won't get anywhere if I don't try, hmmm?

He also demonstrated and documented the deterioration in my lower limb strength. It was a bit worse that I thought.

I am very tired, it's a tough fight, some days.

I've decided I either want a metallic purple wheelchair to match Heather's bike, or a bright red one with racing stripes. Red ones go faster, you know :-)

~~ On the other hand, you have different fingers... ~~

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Executive Stress

I had a visit today from a woman conducting research into people with MS and their "executive functions" - the higher-order cognitive processes our brain performs that differentiate us from the Family Feline. We spent 2½ hours playing word games and completing puzzles and generally just making me mentally jump through hoops. It was rather like the "Test the Nation's IQ" that was on TV a few weeks ago. I found it very tiring, but it was also very interesting. I also filled in a questionnaire about my perception of my emotional needs and responses.

Some of it was tests were memory based, ie reciting back lists of numbers and words; some was about matching and relevence, some was vocabulary stuff, some problem solving, some general knowledge questions (just how fast IS the speed of light, anyway and who the Hell wrote "Faust"?), some mathematics and some observation and recall stuff, too. It covered all the learning styles, with the major emphasis on auditory, followed by visual and only a small amount of tactile exercises. As I expected, I did better with the visual games and the puzzle blocks, I'm not auditory and I don't like listening to stuff; just ask Irene about that and watch her jaw clench!

It was gratifying to realise how much I did still remember, but it was somewhat chastening to come face to face with how much reasoning and remembering ability I have lost. Once upon a time, I would have flown through her questions, especially the memory-based ones and not missed anything; today I was just simply blank when it came to reciting groups of numbers and words back.

Ouch.

I think I'd better make a T-shirt for me, like the one I made for Colin with his name on it. Then we can practice together for those inevitable "senior moments".

Only I won't put "Colin" on mine. That would be silly :-)

~~ "Women who seek to be equal with men lack ambition" - Timothy Leary (1920 - ) ~~

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Done Deal

Adam and I shopped our little legs off yesterday and, wonder of wonders, we managed to score a disability park everywhere we went - Bayfair, the supermarket and the Big Red Shed. Someone was smiling on me. Just as well, too, by the time we got to the Red Shed my legs had decided they were happy to wait for me in the car, thank you very much. After picking Heather up from school and getting the shopping out of the car, I was way past exhaustion and right into desperation, so I left the kids in charge of putting things away and headed off to bed for a wee coma. When I finally surfaced a couple of hours later, nothing had been done in the kitchen so I gave them a bit of a bollocking. In fact, I spat the dummy.

I can get a bit tetchy, just sometimes. Ok, all the time. But I have a good excuse; I'm a complete bitch. I was recently told that I must be careful, I am not allowed to blow my top at the kids. Stupid me, I forgot that I'm not just the ONLY parent, I have to be Super Parent as well. Everyone is a fucking critic, it's really easy when they have no idea what living inside me is like, especially when they have no fucking idea what it's like to be a single parent, either.

I'm fighting off a cold, but I think I'm losing the battle. I have a sore ear and I never get sore ears, I leave that for the kids. I'm kind of pleased I already have an appointment with the doc on Friday, though. I really hope there is some news about my next prospective chemo treatment, I'm rather scared of this galloping beast that seems determined to drag me kicking and screaming behind it. And drag me it is; new symptoms are popping up most days lately. Small things, scary things. Things that I have yet to find a name for. I'm hoping the doc can do a bit of labelling on Friday, as well.

Usually I hate labels. I think I mentioned that once before. The downside of wearing a label is you are immediately classified in some way, straight away you are part of some sort of collective. But labels are important to describe what one feels, too. If I walk in to the doc and say "my foot feels funny" he will immediately ask for a better description, one that allows him to understand better. Or he will assume I have my shoes on the wrong feet. If I say "my foot is going cold and numb in places and my toes are like ice on fire" he knows I have a silly MS thing going on.

It's like that joke that was doing the email rounds a while back, the one about the blonde who goes to the doctor and says "Doctor, when I touch my head with my finger, it hurts; and when I touch my arm with my finger, it hurts; and when I touch my leg it hurts, too. What's wrong with me, Doctor?" And the doctor replies "you have a broken finger". And that's it, in a nutshell. You only get answers if you ask the question in the right way. Or get help if you explain the problem the right way.

I have weakness and pain and numbness and loss of heat/cold sensation and fatigue and depression in various places, displayed in my body in a wide variety of forms. But I don't have a broken finger; I have a broken brain. Or, to be more exact, a broken Central Nervous System - my myelin ain't s'myelin any more.

Oooooooh, the implications! I couldn't have something straightforward like an ingrown toenail, could I?

I'll be your hypochondriac
I'll exhibit every trait
I'll cry on cue enough to show
You should buy me a padded crate

I'll be your hypochondriac
I'll laze around in bed all day
I'll be grumpy if you ring me up
And whine if you stay away

I'll be your hypochondriac
I'll do nothing but demand
And you'll be sorry you stopped to chat
When my head and mouth are armed

I'll be your hypochondiac
I'll always be asleep
I'll nod off when in mid sentence
And never dream of counting sheep

I'll be your hypochondriac
I'll be a prickly pear
I'll die inside to tell you things
Then shut my mouth when you are here

I'll be your hypochondriac
It's hard to remember I exist
Hours turn into days and weeks
And there's no free time on your list

I'll be your hypochondriac
I'll no longer show you where I hurt
I'll hide it all inside this shell
And not snivel on your shirt

I'll be your hypochondriac
I'll stand alone, behind, apart
I'll hope that sometimes you'll remember
When you owned some of my heart.

Having MS is like playing Euchre with no picture cards in your hand. You spend all your time at the back of the field and never score any points.

Shame I can't deal my own hand.

~~ Be grateful for the small mercies; sometimes they are the only ones you get ~~

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Check Out

Tomorrow is shopping day. You can tell how much I am looking forward to it, can't you? It's got me a bit worried, my leg strength and usability has declined somewhat since I last did the housewife's hike a week ago. Before MS, I could buzz around the supermatket and do a full weeks shopping in under half an hour. Now, sometimes, it feels more like it takes me that long just to get inside the doors. Especially if the disabled car parks are all full, which they usually are.

Why is it that there are never enough disabled car parks? It doesn't matter where you go, there are never enough. Except in First Avenue. There is usually one there. And what's with this new "mother's car parks" bullshit? Jesus wept, there are that many prams and strollers and pushchairs on the market to cater for multiple kids, why the hell does a mother with small kids need special attention? If they have trouble controlling their brood in a car park, they could always put them on a leash - that's what we did to Adam to stop him playing under vehicles. A full harness and leash and he used to strain against it like a St Bernard. Of course, it's probably not kosher to restrain a child like that these days, it's probably a breach of their rights as an individual to become a statistic, or likely to cause years of untold misery because their budding psyche was pruned by the harsh realities of personal safety. Adam will probably end up in prison for bashing little old ladies over the head with a wet fish and raping their garden gnomes because his mother stopped him getting run over when he was 2. Sometimes it doesn't matter what you do, someone is going to say you are wrong.

Bugger.

I keep getting told, in lots of subtle (and sometimes not so subtle) little ways that I'm not allowed to feel what I feel, I'm not allowed to think what I think and I'm not allowed to want what I want. And I get really angry sometimes that nobody seems to be listening.

I've built one hell of a high pain and discomfort threshold in the past year or two, much more than I would have thought possible. But sometimes that's just what you have to do to get by, to cope, to survive. It's that "invisible disease" thing again; I look ok therefore I am ok. Smiling on the outside and dying in the middle, hidden a mile below the surface I plastered on this morning. Hiding the pain seems make the rest of me invisible too. Just occasionally it would be nice to have my feelings acknowledged, you know, out loud. Yes, I hurt. No, you cannot make it better. But you can help me cope with it, if you really want to, if you'd just recognise it, admit it exists rather than just let me feel like it isn't real and is only a figment of my fucked up brain, not something of any consequence. And sometimes I get really angry that it's ok for me to be understanding and supportive when someone else is under stress, but it's not ok for them to do it in return. How loud can you say "back pedal"? Living inside pain, day in and day out gives a curious sense of unreality to life, you know?

I have this thing about quality versus quantity. I'd rather have a small something that tastes great than a big one that only tastes ok. I'd rather conserve my resources to have a good evening out once in a blue moon than knock myself dead for an ordinary outing often. Quality is Queen and size don't matter. This does not, however, stretch to include the bedroom ;-)

I took the first lot of chemo in a bid to stave off the progression of the disease and give me more quality time, even if it meant I ended up leaving the battlefield earlier. The reality is that I'm not hitting 40 with many good, happy useful years ahead of me like the rest of you might have, Im hitting 40 and I've got no good years left. The reality is that if I don't do everything I can now (and that includes taking drugs that might make my lifespan shorter) I'm going to have one hell of a long time sitting all alone in my wheelchair and my bed every day to second guess myself. If I can get my physical abilities under control and have a few more years of minor usefulness without being a crippled vegetating burden on every one around me, that would have to be a good thing, wouldn't it?

The first round didn't slow the progression. So I'll take the next lot of chemo if they want to offer it to me. And I'll take any more they have any time they want to sign the piece of paper. If nothing else, at least inside me I will know I did what I could. It's just a shame that it's probably already too late to save my legs.

I have no intention at this point in time of allowing myself to become a bedridden cripple. No-one but me has the right to decide when I have had enough pain, suffered enough loss, become too useless, been denied, forgotten, ignored and excluded by the world enough times. Only one person has the right to make the decision to check out and that's me.

It is, of course, of purely selfish motivation. But it's not half as selfish as those who might tell me it's wrong, simply because I might have some minor use as a martyr to pain and suffering in the name of courage or bravery. More like bloody stupidity.

As the gap between "me" and "them" gradually widens, so the ties will stretch and break, one by one. It's already happening. Eventually there won't be enough left to tie me anywhere, to anyone except my kids. And they won't always need me like they do now. They will also understand why; after all, they're the ones get to stare the reasons "why" in the face, every day. Poor little buggers.

The countdown clock is ticking. It was armed on October 13th, 2001 - the day they told me I had MS.

I'm already sick of hurting, sick of burning, sick of crying alone, sick of being some sort of inconvenience and sick of being a bloody nuisance. Besides, I am planning one hell of a Bon Voyage party with a bbq to follow :-)

But the only check out I get for now is the supermarket tomorrow. That's something to look forward to, hmmm?

~~ Peace is when time doesn't matter as it passes by - Maria Schell ~~

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A good leg over

Why does nearly everyone live upstairs?

It's become a major issue now I don't trust my legs any more. They are too weak and too wobbly and they hurt too much. And now I'm really scared I am going fall, so I try not to do stairs.

I've already waffled somewhere my extreme dislike for heights and that I have fallen down stairs and hurt myself in the past. I fell off my wallpapering stool once, not long after my diagnosis. It was my first accident caused by MS, but not my last. But it wasn't the fall that hurt, it was landing face down on the furniture with the corner of the bedside cabinet stuck hard in my left boob that really hurt. The resulting bruise was very large and very eclectic in it's artistically colourful composition. Those of you who have seen my left boob may, at this point reminisce, the rest of you can use your imaginations. I fell over the dishwasher door once. That hurt, a lot. Adam panicked (he tends to do that) and I threw the kitchen sponge at him. I tend to get very angry when I hurt myself. I fell over some stuff in the office one day too, but luckily everyone was busy elsewhere and I could pull myself together and back onto my feet without anyone knowing. I didn't throw anything that time. I cried, instead.

We went up Skytower a few years ago. It took a bit of mental fortitude to coax myself to stand on those glass panels whilst peering at the tiny ants scurrying on the footpath far below, but by the time we came down all 3 of us were dancing on them, although Adam was a little apprehensive and kept saying he knew I wouldn't let anything happen to him. Would I? I figured that 26 metres or 326 metres, you were going to die anyway if you fell through them. You'd just have a bit longer to admire the view from further up.

Still, I reckon it's not bad for the person who can't stand on a chair to change a lightbulb. Mind you, now it's less a case of standing on the chair than it is getting up on the chair in the first place. Both concepts scare the shit out of me.

I don't do chairs any more, either.

~~ Frisbeeantarianism is the belief that when you die, your soul goes up on the roof and gets stuck ~~

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