Dealing with My Shit ….15 May 2014

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There comes a time that in spite of how much resistance you’re putting up, that being in hospital really is the only choice to make.
I developed a new symptom about ten days ago, my right leg has begun to go lame when I stand on it for any length of time, from brief to long. One can only ignore it so long before action is required…even if it’s something you’d rather avoid. So a quick call to the doc’s rooms and off I  trundle to the clinic.

Of course now that I think I’m having an MS episode with feelings of dizziness and, pins and needles and some lameness in my right leg, an MRI is going to be the order of the day.
My mind is in turmoil, a new lesion on the brain will show the disease is gathering a little momentum, whereas no additional lesions will show slow progress which is what any sane person begs for. However no new lesions is not going to get you the medication from the medical aid that would actually prevent or rather delay the advent of new lesions. A perfect catch 22

The next exciting (Not) hurdle to jump was getting the medical aid to pay the MRI. Turns out that I have a limit on what can be spent on scans per year, whether  hospital our not and but having this latest one, brain and c-spine, going to be R8.5k short. Who knew that getting sick was going to be so Fucking expensive!! I signed my life away and made a promise to myself that there would be no more hospital visits or MRI’s this year, I can’t bloody afford it.

The MRI and two nights in hospital later and I have been sent home as an outpatient. No new lesions to speak of, unfortunately or fortunately. 5 massive doses of cortisone to have administered in the hope that it will help my leg get to its pre-lame stage in  the meantime.
The lack of knowledge and understanding of the disease the medical aid is frightening. At least this admission for a relapse will lift my score to a 3,  meaning that now they may look at a little more seriously.

I feel this taking a toll on my mental state and I am grateful the love and support I around me. The MS future is a pretty bleak place without that kind of support.
The journey continues……

Here are a few amusing pics from in and around the hospital

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Please excuse typos and grammar errors, I’m writing on my phone and don’t always manage to catch autocorrect before it does it’s thing
Mandi

Dealing with My Shit ………….9 May 2014

My medical aid in their blessed wisdom has seen fit to refuse me the medication I need to prevent having further MS episodes, essentially because I am not sick enough. So in order to qualify for the medication I need to have another episode and get a little sicker. The logic, in my very humble opinion, sucks. This medication will, I am told, effectively help to prevent further attacks from happening as well as delay the physical deterioration associated with the disease. I dread the thought of having to land up debilitated and in a wheel chair in a few years time, dependent on the help of others. Accepting help is not my greatest suit and I struggle with it, being Miss Independence does have its downsides as well it appears
The conundrum for me is having to decide if I am having an episode or not and if I think I am, then taking my self off the clinic to get checked in and go onto meds. There are two questions that you may be wondering at this point, 1…what constitutes an episode and 2….Why is going into hospital such an issue you for me?
An MS episode is different from one person to another, thus far in my case it has started with one of my limb joints becoming painful and my head becoming dizzy. Not the kind of fall over, vertigo dizzy but the stoned, turn your head and your brain seems to follow a brief moment later dizzy. I find myself a little forgetful and I get incredibly tired. Doesn’t sound too bad does it, except that the pain in the joint lingers after the episode has passed and I am slowly gathering an entire collection of aches and pains.
As far as going into hospital is concerned, I am only too happy to go in and spend three or so days abdicating my responsibilities to the world while massive doses of cortisone are fed into my veins in an attempt to end the episode and dull the pain. Except in order to prove that this is an episode I am required to have an MRI and a lumbar puncture? Have you ever had either of these things? An MRI means lying absolutely still for a minimum of 45 minutes in what feels like a round coffin with drums beating to no particular rhythm. Thump, thump, thump, brrrrrrrrrrr, thump……clank, clank, thump, clank, thump, thump and on and on it goes. The only way to deal with it, for me, is to attempt, in completely inappropriate circumstances, meditation, as much as medication would be preferable, none has ever been offered! Of course, if you twitch a little too much, the whole thing is a washout and they have to start all over again…………moral of the story don’t twitch and practice a little meditation in a noisy environment as a back up plan.
As far as a lumbar puncture, the only advice I can give you here is to ensure you have a very empty bladder before they start sticking needles in your spine, and if possible establish a good rapport with the doctor who is going to be doing the procedure. It is something you want done as gently as possible and then of course you have ten hours on your back to look forward to with no popping out of bed to go to the loo. Did I mention the whopping great headache that follows? There is that to look forward to but staying in bed on your back will mitigate the severity. Now do you understand why going into hospital at the drop of a hat isn’t a prospect that I jump at?

The other side of this swiftly rotating penny is that unless you go into hospital and subject yourself to the tests you cannot prove to the medical aid that you have the lesions on your brain caused by the disease in the first place, that will get you the medication that they should have given you a couple of months, earlier that would have prevented this attack from happening.
I rest my case

The Hardship of Living…

Mark Reichman 13 Dec 1963 - 1 April 2014

Mark Reichman
13 Dec 1963 – 1 April 2014

I wasn’t there
I didn’t see
I’m left to wonder how this could be
Is this a nightmare from which I’ll wake
Was there no other choice that you could make
Had the burden of life become too much to bear
Was living a torment
Your Life,
One of despair
I don’t understand it
None of us do
Was life a Winter landscape,
So gray and so bleak
Did you think of the destruction you’d leave in your wake
The havoc your untimely passing would create
Your daughters who love you
A Mother, burying a son
Your sisters, as one
Your choice was a sad one
Reality bites
Did none of us see
This
As a possibility coming to pass
This April Fools joke was a little extreme,
The punchline not funny
What does it all mean
You spoke to your mother
You spoke of the future
You sounded happy
And now we know why
Your decision was made, the decision to die
Be at peace
Be pain free
Find sunshine and solace where ever you are
Outshine the stars like a diamond in the sky

Have you ever wondered what the point is? Why is it that you wake up every morning of every day to face the world again? Is it a conscious choice that you make or something that you just cannot avoid? A friend of mine has an expression “The Tyranny of yes, the freedom of no” in my head it resonates as the “the tyranny of life and the freedom of death” but, does death actually bring you freedom or does it merely facilitate the escape from one living hell into a deathly one? And therein lies the rub for me because do we live or do we just exist and if we just exist is there any real point if that is all there is to life?

To the spiritual answers I have no clue and only give a passing thought to when I feel the brush of another beings energy pass across my skin, so it is really the earthbound questions I give pause to in my daily life.
Life is tough, dealing with the reality of one’s daily issues is a challenge that even the toughest, the richest and the happiest face. So what is it that drives a person to the point where opting out appears to be the ultimate solution to one’s woes whether they be real or imagined.
Why do the people who live life on the fringe carry on living? Their lives appear to be miserable with no money, no facilities, no daily shelter and wondering where their next meal is coming from that you have wonder why they choose to do it every day, what not just step off a bridge and end it? Is the human will to live so strong that the thought of ending it all does not enter their heads?
At what point does the need to cease living become greater than the will to live? At what point does the desire to end it all overwhelm the thoughts in your head of the devastation and grief that you will leave behind? What does it take to happen in your brain, what chemicals take control, what thoughts take command that are strong enough to suppress the basic human will to survive? Give thought for one second to the survivors of the concentration camps who lived in spite of the horror and deprivation they were subjected to, give thought to those who suffer from illness and disease whose days are filled with pain and no possibility of relief, they go on every day in spite of the inelegance of living.
Living or existing is the difference between relishing each day and not so much living each like it is your last but rejoicing in the fact that you are alive, that you have a roof over your head, even if you cannot really afford the rent or bond, seeing the sun shine in all its glory every day and laughing in spite of everything.

I too have questioned the point of working long hours, sore feet, soured relationships, the bleakness of the future of the planet, mankind’s inhumanity towards his fellow man and animals and I know in my heart that that it is the way we treat the planet and its bounty that depresses me the most. To me, the people who take it upon themselves to challenge society on the choices it makes are the real heroes, the anti-trophy hunters, the vegans, the people on the ground who face the miserable plight of our lions, dogs, elephants and primates, amongst others. When I see man’s cruelty towards “others” I wonder at the future of life on this planet and I am grateful that I do not have children who will be left to fight the fight for the well being of planet Earth, when the water runs out, when the rain forests are decimated, when the fundamentalists take over, when freedom of choice is no longer an option. Is there any wonder then, that some people choose to opt out early. You’re wondering why I don’t choose to end it early if this is the bleakness I see ahead?
I know I have had days or weeks even when I have wondered what the point of all this is. Why it is that I get up every day to face the hardship of the daily grind. Admittedly my life is a bowl of cherries when compared to the millions of others out there who struggle with their daily existence.
To quote a friend, life is relentless, it just keeps on going! You can opt out for a while but then you pop your head back out and life, like the steamroller it is just rolls on over you and carries on, your choice is whether you want to stay in it’s path.
I think life is more like a roller coaster, exciting and scary, with never a dull moment but it’s your choice if you want to close your eyes, hold on tight and scream in the face of it or put your hands up and yell out your challenge to the skies with your eyes drinking in the ride.

Would I ever consider suicide as an option?
Yes. Maybe. I don’t know. Possibly. The day that my disease reaches a point where the quality of my daily life becomes a chore and I am a burden to others, maybe then.
Until that day NO, not whilst the sun shines, I can laugh at my foibles, paint a canvas, sculpt out of clay and work for my daily bread. Not whilst I still enjoy the feel of rain on my skin, the pleasure of living is not a hardship to be endured.
I have now experienced those mangled emotions, suffered the grief, wondered why, questioned why, found a few sad answers and realized that so many of the questions will remain unanswered. Now I know the devastation of suicide is not just something that happens to other people’s families, now I know that suicide is a choice that anyone can make

The thirsty days of mourning is over, but my life will go on
Rest in Peace brother