40

In six more months I will be 40. I know you were just dying to know that.

I don't mind the thought of being 40. Isn't that when life begins? Well, I was sort of subscribing to that theory up until a couple of years ago. Now, I'm not so sure.

I started school the year my parents turned 40. I always said I didn't want to be an old mother, wanted to be able to grow up with my kids and do stuff with them. So I had mine a bit earlier.

Life just sort of doesn't always go quite the way you think it should....

I have a friend who reckons that I must have accumulated a few lifetimes of Karma and this is a real big time payback so I better not muck it up.

I hope I had fun earning it.

~~Whatever hits the fan will not be evenly distributed.~~

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Bored

I am bored. Not just twiddle my fingers and wonder what's on TV bored. I mean REALLY bored.

Once upon a time I didn't have time to be like this - life was one long race and I was always trying to keep up and not quite succeeding. Now, there are a couple of things I would like to do but I feel like shit and bits of me won't work properly. And even thinking of planning things is too hard sometimes.

How unusual.

I just spat coffee all over my keyboard. Not intentionally, just cos I can. See, one of the things that pisses me off about MS is its lack of predictability. Little things just pop in and say "hello" and disappear again. Silly things like weak knees and curly feet (and no, we aren't talking hubba hubba) and a decent swallowing reflex. And I don't always notice their arrival (or disappearance) until it's too late. I can never really tell what sort of a day it's really going to be until whatever it is that's coming wakes up. Sometimes in the mornings I actually feel quite good. Legs are working and not burning too bad, I'm not too nauseous from the drugs, head isn't hurting, hands aren't shaky and I can remember my name!

Then I get out of bed and it all goes to shit. Funny that.

Other times I know at 4 in the mornng that it's gonna be a bitch by the screaming pain in my head that jerks me awake. I tend to have to stay in bed on those days. Sometimes I just can't walk and stay in bed.

So today, I stayed in bed. All day. Oh, I got out a few times to have a coffee and check email, but the rest of the time was spent in bed reading. And sleeping. Mostly sleeping actually. The trouble is, I don't feel like I have had any extra. I still feel knackered. I am not a great fan of the fatigue side of MS. In summertime I tend to fall asleep in the middle of a task. I find that a trifle disconcerting, but it's even more so for any drivers coming the other way. Life can be really exciting sometimes :-)

It's time to take my tablets. A whole damn handful of 'em. I am starting to dislike tablets. My mother used to take them by the handful, too. More about that below, though. So now I have to swallow my cocktail and pretend that I won't be awake half the night feeling sick. And hope that I keep them down. Tall order. Taking tablets is boring.

I am, of course, becoming housebound. This increases my boredom. Even I have become bored by the sound of my voice. There are some compensations for staying in, for instance I don't have to brush my hair every day, and petrol consumption is heavily reduced but on the minus side I am getting very lonely. I do not know why I need adult conversation. If I hadn't run into my father in the hallway today, I wouldn't have spoken to an adult at all. From my cave I can see the world online, with ICQ and Messenger going. But during the day, many aren't logged in, and those that are I know are too busy to chat. So now I stay hidden and they don't know I'm there. Not their fault I'm an alien and they have lives :-) If I didn't get spam, some days I wouldn't get any mail, either. I'm starting to like chain mail. This is a worry.

I wonder what colour my wheelchair will be?

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

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The Guinea Pig

Human Genetic Engineering

Human Genetic Engineering (HGE) is a relatively new branch of both the scientific and medical fields. Usually HGE is used to "repair" genes in a person suffering some kind of hereditary condition, to alleviate or improve their condition in such a way that the tweaks will not be passed on to their descendants. This "gene therapy" is currently practiced on the non-reproductive cells, but a major step towards reproductive genetic engineering is the proposal by a US gene therapy pioneer to begin gene therapy on fetuses to treat certain genetic diseases.

Couples with diseases in their families can, with the help of medical science, conceive a child with the correct "recipe" to repair a genetic deficiency in another person. Not just can, but do. But is it right? Is it ethical to do so? Should experimentation with human lives become acceptable?

Under what guidelines should a couple actively seek conception? Desire for a child? Desire for siblings for a child? To create a family unit? How should a child conceived for other than the usual reasons view it's existence? As a convenience?


Scenario
A couple marry and a few years later have their first child. Fifteen months later the woman becomes ill and is diagnosed with an auto immune disease, rheumatoid arthritis. She is given many treatments, none of which seem to be controlling her condition. Eighteen months or so after her diagnosis, her doctors suggest that the couple have another child, with the hope that the hormone shift etc will have a positive effect on her disease. Another child is born. The woman's condition continues to deteriorate. The "experiment" has failed.

Jump forward 38 years. The baby is now a mother. She becomes increasingly unwell. She is diagnosed with an auto immune disease. Hers is called Multiple Sclerosis.

What was this if not some crude and unformed type of genetic engineering? Not in the traditional sense where genes are being manipulated prior to or post conception, but by using the conception itself and the pregnancy as a form of treatment. A child has been "bred" to fulfil an objective. The objective is not met. Has the potential to inherit a susceptibility to an auto-immune disease been passed to the child? How should that child feel?

I am the child. I feel pretty gutted.

~~It is better to do the wrong thing for the right reasons than to do the right thing for the wrong ones.~~

I think I better hold that thought.

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Relationships

My legs belonged to someone else yesterday and my hands and arms were very shakey. Most of me was somewhere else a lot of the day. That's probably why I bit my lip and shit, did it hurt. Didn't bleed, just bruised it badly. Major ouch.

When I was married, I used to struggle with the concept of "bite my lip". My parents had told me to do that my whole life but I never really did get the hang of it. As a wife, I found it easier to bite back and confront issues head on than sit down, shut up and await my chance. Trouble is, life became one long fight and the only thing I ignored was the voice inside saying "get the hell out". I managed to ignore it for years. Twelve of them, to be precise.

One day, I couldn't ignore the voice any more. I took the kids and walked away. I had invested 12 years and lost the battle, or so I thought. I had been raised to finish what you start and not to quit. And I had done just that. Things were hard for a long time after that; newly single, a couple of rugrats in tow, I was 32 years old and had no idea who or what I was. I had grown up inside a dysfunctional relationship and it had soured me to the point I didn't think I would ever go there again. And I guess I never have.

I did become a dreadful people-watcher though. How people relate to each other as family and friends has always fascinated me, but I didn't look too hard at the marriages of those we knew, too scared to see the glaring holes in our own and have to acknowledge the truth, perhaps?

Now, six and a half years on, I have done loads of couple-watching and I have seen that we were not the only dysfunctional couple. Not by a long shot. I have also seen enough couples living the fairytale to know that the possibility of it exists. Such a shame that some of them cannot see the wood from the trees and be grateful for what they have instead of whining about things of no importance like sox and new cars and nights out on the piss.

It could be worse, they could have to do it all alone.


Someone rather special, who never forwards on this stuff, sent me this. Some things really hit home, you know?

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1. I love you not because of who you are, but because of who I am when I am with you.

2. No man or woman is worth your tears, and the one who is, won't make you cry.

3. Just because someone doesn't love you the way you want them to, doesn't mean they don't love you with all they have.

4. A true friend is someone who reaches for your hand and touches your heart.

5. The worst way to miss someone is to be sitting right beside them knowing you can't have them.

6. Never frown, even when you are sad, because you never know who is falling in love with your smile.

7. To the world you may be one person, but to one person you may be the world.

8. Don't waste your time on a man/woman, who isn't willing to waste their time on you.

9. Maybe God wants us to meet a few wrong people before meeting the right one, so that when we finally meet the person, we will know how to be grateful.

10.. Don't cry because it is over, smile because it happened.

11. There's always going to be people that hurt you so what you have to do is keep on trusting and just be more careful about who you trust next time around.

12. Make yourself a better person and know who you are before you try and know someone else and expect them to know you.

13. Don't try so hard, the best things come when you least expect them to.

Remember, whatever happens, happens for a reason.

---

I know it was intended to inspire hope, not reinforce despair. I shall take it the way it was meant.


As babes we have no knowledge
Of the trials that life will bring
Just living, being, growing
All our focus on these things

As children we believe in fairytales
Handsome Princes riding steeds
And dream of lives so rich and full
And the fulfillment of all our needs

And then we become teenagers
And life begins to show its claws
We learn of pain and pleasure
And we begin to plan our course

Then one day we are adults
We know now how things work
How to play the games that grown ups play
Which responsibilities we can shirk

But adulthood comes with a price
One that will always cost us dear
When our dreams tumble down from the shelf
We learn what's truly meant by fear

As adults, love becomes a weapon
One some wield with mercy none
While others no not what loyalty is
Or how to share their sun

We learn through life that it is tough
To love and be content
To find happiness and trust again
When all hope's long since spent

The human that's inside us all
Cries out for life that's fair
While all around us crashes down
Everything for which we care

If I'd been born a cat or dog
I'd never know what loving costs
Or what we need to make us live
How it hurts when love is lost

Confusion reigns, despair is King
And misery abounds
Avenues of hope closed one by one
Silence overwhelms all sounds

Understanding how life really works
Is something we are not permitted
All we know is the duration's long
And we must be committed

We must find a path to happiness
Or find a way to end the pain
And know we will break if we don't bend
Don't learn to crawl, walk and love again.

~~We are not human-beings having a spiritual experience,
but we are spiritual-beings having a human experience~~

---

 
Drugs

I don't particularly like pills.

But I take them. I have lots of different ones I am supposed to take twice a day.

There are the "orthodox medicine" ones from the doc and the neurologist. One Prozac to help with the depression and assist the brain to do what it's lost the ability to manage and stop me playing with big trucks on the road. One azathioprine tablet from the neurologist, it's a chemotherapy drug.

Then there is the Chinese medicine stuff. One capsule and 10 tiny pellets. I don't know what their names are, I never was very good with languages. Another reason not to become a programmer. They are supposed to cleanse the blood. I think they do, too. When I don't have them I don't get out of bed any more. There are some tea bags I have, too. They are too sweet though but I manage as a rule. If you mix them with chamomile tea, it's hard to tell which is the viler taste of the two.

Then there is the stuff from the Health shop. Bee pollen, which is supposed to "enhance vitality" and kelp which is good for the thyroid. The answer may indeed lie in the seaweed :-) I also have EPO but you are supposed to take that in conjunction with deep sea fish oils and I keep forgetting to buy any. Must be some Freudian distrust of oily things cos I never forget to buy any of the others.

So I take this cocktail twice a day, morning and night. Well usually.

Then I have other meds that I don't have to take all the time. There are the painkillers, some are fairly heavy duty, well the pain can be pretty heavy to match, at times. I have stuff for heartburn (cos of the pills that give it to me) and some anti-indigestion stuff in case I need it. And the sleeping pills, don't forget them. They are supposed to stop the burning in my legs and help me sleep at night. Well they didn't stop the burning and they didn't knock me out, all they did was leave me feeling like a bag of shite the next day. So I stopped taking them. I suggested to the doc that he doesn't give me any more, cos I won't take them. Or I will take them all at once. I don't think that is quite what he intends.

So there are all these pills, these things going into my body to make me feel better.

Yeah right.

So, I'm taking these chemo pills, azathioprine pills. The intention is to stop my immune system killing me off. Its intended to slow the progression of the ms. But because of what ms is and does and how it does its thing, I have no way of measuring when or if it kicks in and starts to do what its supposed to. Cos I dont know if I would have had a flare up or not, or whether an exacerbation is less severe than it might have been, I don't know whether I am making myself feel like shit just for something to do. Cos I really do feel like shit on them. It's like morning sickness, but it's nearly all day sickness. It wakes me up at night and it won't let me get to sleep... and it goes on and on.

I am supposed to stay on these for years.

And to think I asked for them. Funny how it's legal to pump all maner of shit into me in the name of orthodox medicine, but it's not legal for me to grow and smoke my own pain and nausea relief.

So, the jury is still out on how effective they are for patients with MS. It's more routinely used to suppress the immune system in transplant patients and treat some with rheumatoid arthritis. But the general consensus is that at this dosage it does, in a significant amount of cases, cause lymphoma and leukemia when used for a long period of time. Mainly over 5 years.

I have a choice. Get it under control and maybe have 5 or 10 good years? Remain untreated for MS and have 40 crappy ones.


So, what would YOU do?

I know what I prefer.

~~A sacrifice is only a sacrifice when you lose more than you gain~~


God Sleeps In The Stones
Dreams In The Plants
Stirs In The Animals
Awakens In Humanity
And Plays With All...
"Author Unknown"

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Shaking the Alien Nation

Sometimes, I feel a bit like I've just landed from outer space. A bit like E.T. with having to hide away to be safe. I have some cognitive difficulties. They make it hard to communicate sometimes. On the inside I know exactly what I want to say. Getting my brain to organise itself enough to tell my tongue to wrap itself around the words, well that's something else entirely! And then there is "Word". Word represents any word that is lurking on the tip of my tongue, afraid to take the plunge into the air and be heard. I don't quite speak the lingo of this Alien Nation I find myself existing in. Almost, but just not quite.

Take me to your Dealer :-)

I can't do a lot of the things I used to. I can't run up and down stairs any more, I can't carry heavy boxes any more. I can't remember things and I can't run around after others any more. I can't wander around in the sunshine with the kids in summertime and have a day out doing anything which seems remotely fun. But I guess the fun stuff isn't important any more anyway, I got out of the habit of looking for fun all those years spent head down and bum up studying. Fun, in those days, was a luxury I didn't have time to actively pursue.

Now, of course, I have all the time in the world and no ability to do it. I can't be independent any more.

Isn't it strange that princes and kings..
And clowns that caper in sawdust rings..
And simple folk like you and me
Are builders of eternity..
For each is given a bag of tools..
A shapeless mass.. A book of rules..
And each must make, with what tools they own..
Their own building block or stepping stone..
"Unknown"


I got a fright the other day, not a big one, just enough to make me think my car was about to be shortened a few feet by something rather larger than itself. And afterwards, I got the shakes. I mean, I was trembling. Weird. I shook all over for 10 minutes and spent the rest of the afternoon in a less than stable physical state. I realised that I am becoming even more of a wuss. Made me walk funny for a few hours, too. And I think I should stay away from rubbish trucks. Of course, a few days later I was wanting to park under a truck, but that's a different story...

Fear was one thing I never gave a whole lot of credence to. "Feel the fear and do it anyway". I used the fear, my lack of confidence to goad myself into achieving more and more. Now, it rules my life.

Alienation.

Bugger :-)


Light a candle, pray for me
To whoever is your Deity
Who blows the wind
And stirs the sea
And holds us in Their hand

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

---

 
Friends...

I was having a bad day, the other day. I had a really sore head and I had been feeling nauseous for days. It was a busy day with lots happening, only not a lot happening MS wise. Legs weren't working very good, hands wouldn't co-ordinate...eyes wouldn't focus and brain wouldn't process. And I had awful pains in my head.

After an introduction to Jetstart earlier in the evening (thanks to one of these friends going to the bother of installing it for me), I ended up late at night driving down out of the hills on the right side of a good shoulder massage (courtesy of another one who bothers). Head was clear, pain was gone for a while and I was deep in thought... I love to drive on a clear still night. I could drive forever and never come back if it could change anything.

So I drove on this night, thinking about friends, and why they are so important... what they bring into my life, what they give me just by their strong and solid support. The shoulder rubs, the infrequent cuddles, the ears that are open and listening and the quiet affirmation that I am still me, somewhere in here. The practical help, the emotional backstop.

And how hard it is to feel worthy of the support I get.

I look at them and wonder why the hell they bother! All I see in the mirror is an emotional and physical millstone. So they must see things I can't. I don't know what I did to deserve them, and I don't know what they did to deserve me. Damn, I wish I knew what it was!

I think that people come into our lives in funny ways for a purpose. I don't believe in coincidence... it's all a part of the Master Plan mapped out ahead of time. Good people come into my life and stay a while, some a few years, some a few decades... some for a lifetime, or two or many, perhaps. Some people I feel pain just thinking about them being absent from my life. Some, their role has changed completely. Some have left the building. Maybe people leave our lives again when their role has reached it's conclusion, or ours has reached it's.

But still, my special people around me twirl and spin as they dance their daily lives, whilst I sit perfectly still with no path to follow, no music to hear, no steps to dance. No focus, no season, no rhyme and no reason.

I can't figure out where it all went wrong. It's like solving a jigsaw puzzle with a few pieces missing.

I don't like jigsaw puzzles.

I guess the real problem is that my needs as a "friend" have changed dramatically from what they once were. I no longer look to my friends just for occasional companionship and a good laugh as much as for emotional support and someone to really talk to. I find this really hard to deal with, having spent so much time relatively independent of such things and involved every day in the "real world" with people to talk to and places of interest to go and lashings of energy to accomplish all this. Now I don't have the energy, I don't have much time out in the world and I don't have anyone to talk to. I am indeed an island now, where as once I guess I was a peninsular? I used to be the listening ear for others, now I need an ear and have no idea how to be the one doing the talking or the crying, be the one who needs the cuddle.

I feel weak and foolish and an emotional burden to those I would really like to sit down and talk to. Instead of being the one doing the giving, now all I seem to do is take. Take, take, take. Money, resources, emotional strength. Time. I have discovered I am a costly friend. It's just that no-one has had the guts to tell me to my face - yet.

I guess it doesn't help that everyone also has a life of their own, families to see to, partners to be with and don't have the time or the ability to give me the way I need now, as opposed to the way things used to be.

MS destroys more than a central nervous system, it destroys relationships and friendships and everything I used to know as "Truth" has changed, only the people I care about haven't changed at all, just me.

I don't know how to be this new person, how to reforge these friendships within this new mould... maybe it is wrong to try? Is it better to lose them all, let them go on with their lives unhampered by this needy parasite who is suddenly within their midst, uninvited and unwanted, and make new friends based on who I am now? Or is it better just to let it go, withdraw from the world and those in it and avoid the guilt of no longer being the friend I used to be?

You see, I have some wonderful friends. And I love them very, very much. They are to me as my family are - vital, a part of me, one more reason to stay around and endure what comes. But watching me deteriorate, watching me fight just hurts them. Their not having time for my new needs hurts me.


Real Friends are special, not the toss away items that seem to pass for them these days. Truth, love, honesty, compassion, selflessness, constancy, sacrifice, committment, they all = "Friend".

Maybe it's time to just quietly withdraw...

~When you can't have what you want, it's time to start wanting what you have.~~


The Rock

One broken link in a chain of links
All smashed beyond repair
Jetsam on a sea of grief
In a world that never cared

A world that passes by its Rocks
And never sees their needs
Oblivious to those underfoot
And doesn't care that Rocks can bleed

Like bitterness the Rock's blood congeals
As it soaks into the earth
Invisible to those those walking overhead
Though Rocks bleed like this from birth

In silence do they suffer
And no-one notices their pain
For they become invisible
Yet their deeds always remain

Out of step with their fellow man
For them Life's drumbeat is all wrong
Their values singing out of tune
And they can't hear this "Mankind's" song

Many passers-by lean upon the Rock
That's so conveniently placed
But bit by bit the purpose
Has all it's usefulness erased

Next time you lean upon a Rock
And admire the splendid view
Stop and think of those you hold dear
Just whose Rock are you?

---

Fun...

I did something fun the other week... and all because someone was thinking of me.

It was something I had never been invited to do before. I went for a spin in a little red racing car... and it was awesome!

I wasn't scared that something would go wrong and that I would fuck up/fall over/drop something... just enjoyed the buzz of doing something new and fun for the sheer hell of it. It wasnt scary at all, I have loads of scary shit in my life that I have no control over, at least there was someone in charge of the car that I trusted implicitly unlike the rest of my life hurtling driverless and out of control into whatever...

For the first time in such a long time, my limitations nothing to do with MS. I didnt have anything internal dictating what I did or how I did it. And I wasn't scared.

I was almost a real person again. Just for a little while...



Visit Midgy


To me, it happened as if in a series of snapshots... and this pic looks like what it felt like, my little bit of freedom and self-indulgence.

Midgy, frame-by-frame.

Magik...

~~If all else fails, immortality can always be assured by spectacular error.~~

---

One

One small act of Humanity
Opens up a chink of Hope
One small hand of comfort
Can ease the slippery slope
One small ray of sunshine
Can light the darkest day
One small deed of Friendship
Can give more than you can say
One small touch of compassion
Can lift a burden bleak
One ear prepared to listen
Can allow the chance to speak
One arm to offer solace
Can hold you when you're hurt
One shoulder there to cry upon
Can help you face the worst.

~~One's first step in wisdom is to question everything - and one's last is to come to terms with everything~~