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