Jelly

It's Saturday night.

I've had a day in bed today, just me and the kitten, in the sun, snoozing. I was too tired to stay awake, or sit up for long. I hate that sort of exhaustion, it just saps all the energy and free will right out of me.

Thursday was my first entire day out of bed in weeks, and I packed a lot into it (well a lot for me, anyway). Dropped the kids at school, tidied up before the cleaner got here, did some laundry and attended Heather's parent/teacher inteview, picked up Adam from school and later went up the hill to get the dog's tucker for the next month. By 5.30 or so, I was ready to go home and collapse. And that's when Adam got eaten by a big golden retriever dog. I haven't moved that fast in months.

Fear, like Red Bull, gives you wings.

Chaos reigned for the longest moment as Adam screamed, Heather cried and I clamped Adam's arm while hasty bandages were applied. Cup of pain relief in his hand, we bundled Adam into the car and started the 20 minute journey back down the hill to the hospital. I phoned Reg on the way down to meet us at Barkes Corner and take Heather and our dog home, managed to avoid having our photo taken for posterity (and revenue gathering purposes) by the speed camera at the bottom of the road, dropped the extras and raced the final stretch to the hospital. If I had known then how badly chewed up his arm was, I doubt I would have given a shit about the camera.

Three and a half hours later we finally arrived home; one very lucky little boy sporting multiple serious dog bites (but no permanent damage), stitches, miles of tape and bandages and a new tetanus injection, and one very tired mother who still had a mountain of dog food in the boot of the car to repack and freeze after her brood were fed, dosed and settled for the night.

By 11.30pm the stress and activity had wiped me out and I fell into bed too tired to even check that the front door was locked. I figured Nushka would eat anyone stupid enough to wander in uninvited at night. Now I've now got a pretty good idea what she is capable of. My leg was burning and it hurt. It hurt a lot.

Friday morning, Adam's 10th birthday dawned fine and cold. Heather went to school, Adam went to the doctor. Then we went out for lunch, kindly shouted by Irene for Adam for his special day. A wee bit of shopping for essentials like cooking chocolate, marshmallows and for someone to spend his birthday money meant I didn't begin preparing his birthday dinner or making his cake until well after lunch. Some careful multi-tasking and delegation got everything underway with little time to spare, and a horribly inadequate 30 minute nap was accomplished after the cake was cooked and cooling and the big, bald bird was finally roasting. Cooking, peeling, chopping and stirring, a trip out to drop Heather's gear off to where she was staying at a friend's house, serving, clearing, stacking ... finally it was all over and I could have a coffee. And sit still for 10 minutes. I was really looking forward to doing the sitting still thing.

I got my second wind about 7.30pm; then we went to get this week's dvds. By the time I fell into bed after 1am, I was shattered.

My legs are bendy, jelly-like things today. And one hurts, even when I am lying down.

All this progressive MS bullshit scares the Hell out of me, I bubble over with fear and trepidation. I feel forced to keep it to myself. I feel that it's still not valid.

I can't get angry and yell or cry because it upsets other people. And when I do occasionally lash out, I get slammed for it, but not as hard as I slam myself. I can hurt me far more efficiently than you can.

I can't rant and rave against the pain and the unfairness of it all, I can't say how badly I don't want a wheelchair, cos I get really upset and the kids have enough to deal with. They have their own version of it to handle, they can't carry mine too. No-one else is asking.

I cant say "Ive got a whole boxful of sleeping pills up there and I really want to gobble them down right now". I do have a box of pills and I do want to gobble them down. But I can't actually say that in front of the kids or anyone else any more than I can actually bloody do it.

I can't say "Im shit scared of everything", but I am. Big things, little things, it makes no difference. I'm scared the car will break down, or the dog will get sick, or I will forget something important, or forget to gas up. I'm scared that people will want me to leave the house for something, scared that my head will start hurting again and NOT stop, that my legs will dump me on the floor when there is someone around to see it. I'm scared I won't be able to get up again. I'm scared that something will happen to my kids.

I remember cruising the road to Hamilton on a cold winter's night with a huge, icy moon shining down through the sunroof of the Legend... the heater running, music playing, cocooned in this womb-like warmth, fleeing responsibility for a few hours of hard-earned, precious freedom.

I didn't have jelly legs and I wasn't scared, not back then.

Don't know for how long I am here
A week or a month or 10 years
A lifetime, a second
Before homewards I'm beckoned
End this chapter so riddled with tears

~~ It is hard to fight an enemy who has outposts in your head ~~

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Calamity Jane

Everybody, at some time, has said "I wish I could go back, turn back time, do that again". Pick me, I'm as guilty as anyone of saying "what if I hadn't done that", "what if I hadn't said that", "what if I bought the other one, drove slower, left earlier..." It's human nature to play the "What If" game. Especially when you get a speed camera fine in the mail, the new TV breaks down or your friend doesn't like you any more.

I guess everyone has their own built-in calamity meter, that thing they measure their own bad luck, ill health and general assorted forms of misery against. Comparing your own one against someone else's is likely to end up an exercise in not only futility, but humility as well. For some, top of their list of major crises might include things like losing their wallet, having a disruptive or difficult child, denting the car, getting a flat tyre. Others might view losing a marriage, a loved one, being burgled, having their house burn down or facing bankruptcy to be the worst that can happen to them. There are a million and one things that can disrupt your life and you won't even see it coming or know what to do when it happens. Most people, I guess, would put health, their own and that of those they care about fairly close to the top of the list. Don't you? But sometimes health issues are one of the most difficult to get to grips with, learn to deal with and make necessary changes to get life back on an even keel. If you, or someone you know is hurt in an accident, blinded, crippled, badly burned...severely injured, the phrase "what if" is likely to come pretty firmly into your head. It's easy with 20/20 hindsight to see how things could have been changed to avoid the issue in the first place.

But what do you do if you were born pre-programmed to become seriously or life threateningly ill? Playing "What if" won't do a damned thing to solve that, in hindsight or otherwise. It doesn't matter how far I would like to roll the clock back, I can't go back far enough to avoid multiple sclerosis; my mother couldn't go back far enough to avoid rheumatoid arthritis; my friend can't go back far enough to avoid Wolff-Parkinson syndrome. Some things you can fix, and some you can't. Some things show on the outside and immediately identify you as "impaired", for want of a better word. And some things are all but invisible.

One of the very frequently heard comments about MS is that we look normal. And, a lot of the time, we probably do. We learn to carry the pain inside us and keep on going, we learn to handle the loss and the grief and keep walking until we can't walk unaided any more. Then we learn to put aside our abhorrence of crutches and canes and the stigma they bring and be "normal", just so that people around us can cope with us, and us with them. It's not easy being the cause of distress to people you love; personally I hate it, but what the hell am I supposed to do about it? I've tried really hard to keep the distressing things away from those I care about; I try not to let people see me when Im in dreadful pain and crying and can't cope, I don't like people to see me hit the deck when my legs give out, I hid most of the vomiting and the nausea from everyone when I was having the chemo. An intellectual "knowing" isn't the same thing as seeing the misery up close. Most people have a choice, and one by one they have exercised that choice and withdrawn from the battle.

Because, the reality is that people really don't want to face what we feel. Intellectually, they are interested, emotionally they just really don't want to know. They don't ask the hard questions, they don't ask how I really feel about where I used to be and where I am now, nor about where I am going. They don't want to know how I hurt, how much pain I feel, what I can't do today that I could last week. It's easier to remain in ignorant bliss, cos the truth might not be very nice. And human nature doesn't go looking for unpleasantness if it can be avoided. They are scared to hear it, scared to acknowledge it and scared that they might not be able to cope with it. It doesn't mean they care any less, well not always. It just means they aren't prepared to learn a bit more about themselves by learning how to feel. Not everyone knows how to "feel"; you have to learn that. It goes hand in hand with compassion. That's a learned trait, as well.

It's no wonder I get bogged down in this "emotional incontinence" that a MS brings. It crosses emotional and physical realms and has no straight definition or cure. It's not simple, or straight forward and there is no magic pill to make it all go away. It's like speaking another language, just forming the words isn't necessarily having the comprehension, too. I think, for someone to come close to understanding they have to know the diseased one really well. And those who do usually don't want the distress that goes with it.

Sometimes all I need is someone to hug me tight, cry along with me and tell me they love me.

But no-one ever risks their heart to do that, either.

I think I will just recalibrate my calamity meter and create a new visage, a new face to show the world. I will plaster it on with a trowel in the morning and wash it off with tears at night. From now on, I will always be "fine" or "great". I'm not going to let anyone see how sick or in pain or emotionally in need I am any more. It doesn't matter, anyway. None of it does.

The attrition rate is too high; all the losses hurt too much.

~~ When your heart speaks, take good notes ~~

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Today my friends all went to work
Like all good folks, they seldom shirk
They did their duty, earned their grain
And then they all went home again

My friends have all gone home to be
With their partners, pets or family
Watch the box, put their world to rights
And cuddle up and kiss goodnight

Tomorrow, off to work they'll go
A little knowledge, a little duty sow
And a little satisfaction reap
To reflect on as they fall asleep

The cat and I spent all day in bed
We dozed and played and idly read
Watched the sun travel across the sky
And saw another wasted day go by

My legs don't work, my head's still sore
And doing nothing's such a bore
I've read the same page thirteen times
And seen none of it, it's like going blind

So if I can't think and I can't walk
I don't think I'll teach the cat to talk
Then I won't teach him how to dance
Poor bugger, he doesn't stand a chance

Neither do I, hmmm?

~~ Do not fear death so much, but rather the inadequate life ~~

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Getting Ahead

I am having a bad head day. It is Tuesday evening and my head hurts very much. It was shopping day today, and I am doing hard time for my exertions on Sunday. I was halfway through the supermarket when I realised I had one of "those" headaches coming my way; someone was sharpening the axe. I was 4 minutes from home when they tested the blade. I was one minute from home when the axe bit in the first time.

It all went sort of downhill after that.

I'd just dragged the shopping out of the car, put away the frozen stuff and fell down in front of my computer with a coffee and various forms of pain relief, when up popped a message from Colin on Messenger.

And I ripped his head off. Then, later on, I shat down his neck for good measure.

A dispute over a cow is not cause to create an international incident and Colin did not warrant the heavy artillery I fed him at point blank range. It's pretty hard to avoid permanent damage at point blank range. And even though he is talking to me again, it's not quite the same. Maybe it never will be again. I should have just shot the cow.

Everywhere I go, everything I do, I take two steps forward and one step back. Occasionally I reverse the steps and go backwards. I really didn't need to go backwards at the run.

I know it's very hard dealing with me when I am emotionally violent. It's even harder being the one doing it. It makes me seem abnormal to those around me. The only normal thing about me is my beautifully presented, text book case of MS, and that includes "emotional lability" and "affective release". These are not symptoms I talk about a lot, because even to me they sound like a crappy cop-out. In fact, I very seldom mention them at all, but I fight them all the time. Here is a snippet :

Emotional Lability
Emotional lability or “moodiness” may affect persons with MS and is manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. It is unclear if the emotional lability observed in MS stems from the distress related to the disease or if it is caused by some changes in the brain. Whatever the cause, emotional lability can be one of the most challenging aspects of MS from the standpoint of family life...

Affective Release
A small percentage of persons with MS experience a more severe form of emotional lability in which there are uncontrollable episodes of laughing and/or crying that are unpredictable and seem to have little or no relationship to actual events or the individual’s actual feelings. These changes are thought to result from lesions—damaged areas—in emotional pathways in the brain. It is important for family members and caregivers to know this, and realize that people with MS may not always be able to control their emotions. "
http://www.nationalmssociety.org/sourcebook-emotional.asp

It really does sound like bullshit, unless you spend days on end crying over absolutely nothing yet feel no grief for things that should be upsetting. The guilt I feel for being so bloody difficult is something I'm not sure most people can understand. It seems so hard to get ahead of this disease when all proportion has left the building.

I get very angry and I get very lost. And I hurt a great deal in lots of different ways. It seems like I'm not allowed to feel bad and no-one ever asks how I really feel about things, the really gut wrenching feeling so I hide it all away where it can't upset anyone. And I hurt some more. I get really tired of trying to be reasonable about being sick. I feel stuck out on an emotional limb and someone is revving a chainsaw.

Colin is my boss and a lot of the time he is my best friend. I'm not proud that today I also made him my target.

"Sorry" is not a word that comes easily to my lips. But say it once, or say it a hundred times, it still means the same thing. And sometimes there is not enough weed in the whole world to make all the pain go away.

I am sorry.

They don't come a lot more public than that.

Last time I got all bent out of shape, Irene wore it. I was sorry that time, too.

~~ We are all travellers in the wilderness of this world, and the best we can find in our
travels is an honest friend - Robert Louis Stevenson ~~

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Attribute

Yesterday, I had a sudden and inexplicable burst of energy and enthusiasm. In fact, it was so strong that I grabbed a plastic bag and went outside to clean the car. I cleaned all the rubbish out of it, vacuumed it, washed it and put new wiper blades on it. It was scary. I stood back and admired the result of my efforts and my nice, shiny car; then a bird came along and shat on it. You gotta laugh, don't you? I was so tired when I went to bed last night (early, too) that I went to sleep despite the burning. I could still feel it even in my sleep. I know I was asleep, I could hear myself snoring.

I hate that.

While I was cleaning the car, Adam was in "helper" mode and was working hard at flattening out an area of soil that didn't really need flattening, but he also moved a pile of rubbish that needed moving very much. He was very upfront in saying that he was only doing it to get pocket money. He's been really helpful lately, cleaning up the kitchen and tidying up where I need to walk so that I don't fall over things. Heather has been committing random acts of generosity and helpfulness lately, too. Heather being generous and helpful can be a scary thing. I think it's because she is 12. Of course, her pre-teen tantrums overshadow her helpfulness quite substantially.

This morning, I crawled out of bed, slithered through the shower and wandered off up the hill to Debbie's for a massage. Some of the areas she deals to feel just divine when she's working them over. Some of them feel like there's a large spike skewering me to the bed. I know better than say "ouch" now, that just makes her work harder and this is something to be feared. I wonder just how many ways I can scream "arghhhh" before I exhaust them all? Afterwards I usually feel a million dollars. Ok, $42 anyway. Her massage this morning was no different and it felt wonderful. I'm hoping it might help the spasticity in my left leg that makes it hurt so much. I had a lovely visit from Amanda and the kids in the afternoon, picked my crew up from school and fell asleep as soon as I got home. When I woke up at 5.30 I felt and looked like a bag of festering arseholes. And poor Adam had a migraine and didn't quite know what to do with himself, either. There is even more of me in him than it would appear on the surface.

It's funny how we look for familiar or identifiable attributes in people. Especially in family members. "she has Grandad's nose" or "he has Great Aunt Maude's moustache", things like that. It must be really hard to be adopted and not know who you really do look like. Raewyn looks like Reg, I look like Mum. Adam looks, talks and acts like me, right down to the stubborness, obnoxiousness and sheer brutal honesty (or is that honest brutality?), but he has his father's legs and feet (I wonder what David is using, then?). I'm not sure who Heather looks like, but she is small and dainty just like my mother was, something of a rarity on either side of her extended family. And she is going to be gorgeous. It's much easier to get things in life if you are attractive. It will open more doors for her in her lifetime than it closes.

I guess we look for familiar attributes in our friends and acquaintances, too. That old adage, "by our friends are we known" has some relevance, I think. There's another one, too. "Lie down with dogs and get up with fleas". I guess that's what makes it so hard to maintain a friendship with people when one side is doing most of the giving and the other is doing most of the taking, or one side is usually on time and the other can't even remember there is a rendezvous to be at. That sort of disrespect really hurts. Especially when you think a lot of the person who is doing it. It's a prickly one. I think we choose, and are chosen by, our friends based on some unconscious criteria, probably applied in the first 10 seconds that we meet them and reinforced over the next few hours, things like a compatible sense of humour, likeminded standards, interests, knowledge and skills in common, physical attractiveness. First impressions do count, we just get to disqualify ourselves at our leisure when we eventually fuck up real bad and cross someone's boundaries. And there are some people who will do it over and over again if you give them a second, or a third, or a 10th chance, never realising or caring about the long term hurt they cause nor the eventual penalty. Not until it's much too late.

Oops.

So, I offer a tribute to those who have stuck with me thus far as I approach my third year riding the rollercoaster, who have put up with my snivelling and whining without slapping me too hard and have adjusted to this awful inequality that now exists; the one where they do the giving and and I have nothing to give back. I am not going to name them because they already know their names. Besides, if I leave anyone out by accident, I'm not going to be popular. There are some things you simply can't buy in life; friends are one of them. May all your boundaries be big fluorescent ones that I can see in time to bounce off rather than fall over. It will make life a lot easier for all of us :-)

I'd really like to talk to that fucking bird that shit on my car, though. I'd give it some attributes never before seen in any bird.

Free.

~~ It may be that my sole purpose in life is simply to serve as a warning to others ~~

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Balance

I have become unbalanced. I am sure this comes as no surprise to you.

I was always clumsy, all my life. Show me a hole in the ground and I fell in it. Show me a lump in the track and I tripped over it. Got stairs? I fell down them, too. When I was a kid, we lived on a four-tiered section with steps between the top three levels. All the kewl stuff was near the top; Reg's big two-storeyed workshop full of neat things like grease and paint and machinery, the stable was up there, and so, at times were some of the animals. I spent loads of my childhood falling up and down stairs. And into the pit when the truck wasn't on it. And tripping over the gravel on the road outside the front gate. And falling off horses.

Gods, I wish I had a buck for every time I fell off a horse and $10 for each broken wrist or ankle. I always landed on my head, too. I know you won't believe this, but some people in the past have been uncharitable enough to murmur things like "that explains a lot" and "no shit" when they hear such snippets of historical uninterest.

Bastards :-)

I have this dent in my head, you see. No, shut up, I do. Even my doc laughed when I said that, well until he had a look at it and declared it to be a compressed skull fracture that needed fixing. I said it was a bit late, like about 30 years too late. I got it one sunny afternoon when I was about 7 or 8, when Tinkerbell decided to remove this encumbrance on her back in the most expedient manner she knew. On the tarseal. Head first.

Mum said I had the best black eyes she had ever seen. That was really neat because they lasted 3 bloody weeks.

I really loved riding. Well, except for the bit about being up on their backs; I don't like heights, you see. And the aforementioned cranial collisions with the ground. And being perched atop a huge, hairy half-Clydesdale brute named Blue with big feathered feet who just happened to love playing in the middle of the river. And the occasional, unexpected long walk home. And pony club; I hated fucking pony club. Lazy and undisciplined, me. I preferred to "strop around with the Maoris", as Reg put it. He used to shake his head in disgust with me on a regular basis. He probably still does. Besides, I couldn't compete with Raewyn, so why bother?

So I guess I was always a little unbalanced, if you know what I mean. Now that I have MS, at least I have a valid excuse for rolling from side to side and falling over absolutely nothing at all and now you can't hardly tell whether I'm pissed or not because I always forget my words, weave about and lose track of the conversation. Yippee, a genuine Claytons Lush.

So many kinds of balance necessary in life. Too many, it's hard to juggle them all. Even now, with all the time in the world to do sweet fuck all, I'm having trouble finding a balance in my day. And I really have trouble planning anything. I just sort of forget things, you know? So I find it really useful to pin things on a board on the wall. It's always really full, but at least everything is in there somewhere. I have a whiteboard on the wall too, within easy reach of the phone. I can write down an appointment or phone number in a second... if I can remember where I left the whiteboard marker...

So I try not to plan, then I don't have to function on a too-hard day. But I have no balance, and I guess that's because most of them are too hard days. When I was studying I had all these different hats that I used to put on and off all day, and if I did it right it all came out about even. School/Kids/Work. Sometimes I even budgeted in a little "Me" time. Now, it's all "me" time and I have nothing to fill it with except sleeping and burning. What a waste.

I always wanted to learn to fly. There is something rather pure about it.

It has Balance.

Besides, it's not the fall that kills you, it's the sudden stop at the bottom.

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Where eagles dare to soar above
Aloft on thermals will be borne
In God's great Playground will they dwell
Mere Mortals they will scorn
Their freedom owned by right of birth
From their struggle to exist
Talons grip a still-pulsing death
An understanding we have missed
A survivor to the very end
Whose survival lies in doubt
From the uncertainty of life itself
He knows what dying is about

~~ "Tongue-tied and twisted, just an earth-bound misfit, I " - Pink Floyd ~~

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