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

Rest in peace…… and quiet

your heart is beating wildly in your chest, you can’t breathe properly, you can’t get warm. Three blankets and a 47 kilo dog on top of you are just not doing the job. Then suddenly you are so hot that  the dog gets booted off your chest, the blankets hit the floor and you use your toe to nudge your thick hiking socks off your feet.  You’re dying! You’re positive you’re dying! It is not possible to feel this bad and still be alive, it’s time to phone a friend. Help! I need to get to casualty, I’m dying you say. All the time you are thinking please hurry I really don’t want to die alone at home………….who will feed the dog?

Your knight in shining armor arrives and drives you to the door of Casualty while he heads off to park his trusty petrol stead. You amble your way in through the door past the tired looking security guard who merely looks at you and cocks his head in the direction of Casualty. Just as well you know the way, you’ve been here before to bring in a friend with malaria.  After walking 900 miles of corridor you stumble upon the reception desk (wo)manned by 3 somewhat bulky nurses who look at you blankly, apparently mystified at your arrival, it is after all 21h30 at night. I’m dying you mumble as you bang your head down onto the reception counter. The nurses continue to look at you with glazed expressions on their faces. Where is the sense of urgency here, don’t they realize I’m dying you think to yourself. Eventually one discovers the gift of speech, can we help you, she says. Yes please, I’m dying you say. Still no sense of urgency. The consultation will cost you anything from R550 upwards she says, they appear to want the money before they will help too prevent your  imminent death.

I leave my knight in shining armor to fill in forms and get lead into the consultation room, all I want to do is fall onto the very high gurney but the nurse says boots off, jacket off, jersey off. Enough already I can barely stand, I am dying after all y0u say. Finally a doctor comes in, thank you, thank you thank , whisper to the gods above. Doctor I’m dying, I have never felt so bad in my entire life, I’m hot, I’m cold, my body aches all over, I am nauseous, my throat is sore and my heart is beating up a storm in my chest. Sounds like flu she says, you’ll live and  proceeds to shove a needle in your arm. You now have a drip attached with blessed pain killers to reduce the aches in your body, relief is almost instant. They take enough blood to resuscitate a starving vampire. Your bp starts to drop your heart is no longer playing the drums in your chest and your temperature is starting to come down from 39.3 degrees. Y0u’re being booked in for the next few nights, you have bronchial pneumonia.

The doctor herself pushes you up to the ward, where are the  porters, the orderlies, the nurses. Maybe you have seen too many Hollywood productions ER was never like this and where hell is George Clooney when you need him. She hands you over to the kind of waiting nurse, relief you think, now maybe I can get some sleep and start to feel better but you are wrong because the fun is only just beginning.

You’ve lost count of how many times they have asked if you are allergic to anything, the nurse brings along the blood pressure machine to take another reading. The machine sounds like it is from the dark ages as it cranks up. Does no one know how to do manual BP readings anymore? It is almost 11pm by  now. You have sent your knight in shining armor home, some one needs to dog-sit The ward is still brightly lit. Only 3 of the 6 beds are occupied you will fill the fourth.

Imagine the 3 Stooges arriving at your bedside with an ECG machine, the doctor on call has requested your heart gets checked. All these three trained professionals have to do is apply the 12 odd pads to  the skin on your chest and abdomen, connect the plugs to the pads, press start and voila the machine will do the rest. Alas the machine can only do this if it is connected up properly so Moe, Larry and Curly spent the next 20 minutes re-arranging the plugs and printing out results that reflected exactly how you were feeling at the time………..dead. Flat-lined. Caput. Of course you would think that the Sister in Charge would come charging to the rescue and put the plus in the right place, except that she didn’t appear to know which plugs go with which pads either………..this scene is best imagined in black and white, in keeping with Moe, Larry and Curly, that way you won’t notice that the plugs are colour coded and labeled R and L. Finally the 4 Stooges manage to determine that you are alive with a regular heartbeat and they toddle off and then of course the nurse with the paperwork arrives. Forms. No I don’t suffer from an entire list if illnesses that I have never heard of. Midnight.

The doctor on call has just been to see you, listened to your chest,  your chest hasn’t had this much attention since you first grew boobs at 14. Bronchitis he says, possible pneumonia. You need to stay here for a couple of nights to recover, massive doses of anti-biotics and you will be fine, the cough will last about a week he says. He is an older guy, a little portly, smelling of smokes and Old Spice, he makes you feel a lot happier about how lousy you are feeling. Already you are feeling better. A couple of nights in hospital to rest and recuperate will do you the world of good he says. He will see you again in the morning  he says.

The ward is hot. You look around at your fellow roomies. There is a little bird in the bed nearest the bathroom, she is tiny, she looks pretty old. The sign above her head says she must be turned every 30 minutes and no solid foods. The lady opposite me is very regal looking, very dignified. It turns out she has leukemia, was in remission but it has come back with a vengeance. The medication is giving her grief and she is struggling with diarrhea. The last filled bed is a lady from an old aged home with serious bed sores, there are nurses working on her even at 1am in the morning; making notes of the lesions and sores she has, cleaning them up. You feel sorry for her at the time.

They have asked for a urine specimen so you take your drip stand on a walk to the bathroom, getting a glimpse of a big white bottom through the gap in the curtains. You catch sight of the sores,  not pretty. Finally 1.30am they put the lights out you manage to get an hour or two of sleep, it is hard because every half hour you hear them turn the fragile bird over. You are coughing and chesty, and you know you coughed during the night  possibly keeping everyone awake except the regal lady, she had  sleeping tablet. Until 4am that is when a vampire swooped in to take blood from her. The urine sample is still on your bedside table.

The lights go on, 4.30am. The lady with the bedsores complained very loudly that she hasn’t slept at all because of all the coughing. You know she slept, she snores.You feel a moments guilt, you cannot help coughing, you were dying. By 5am she has started to chant an ongoing manta ow ow ow ow ow, no no no no no no, omg omg omg the pain, omg omg omg the pain, oy oy oy oy. It isn’t even 7am yet and you are wondering if it is okay to put a pillow over her head. You no longer feel guilty about the coughing. Bathroom break, you take the drip stand for another stroll. The bird looks at you and very politely asks you what page we were on, you smile at her, ask her if she remembers what page, she says 18. That’s right you say, carry on reading love. Ow ow ow, oy oy oy, omg omg omg. You cannot shut it out, it follows you to the bathroom.

The shift is changing so all the nurses are busy, ow ow ow, oy oy oy, omg omg omg, the regal lady in the bed opposite is in trouble her stomach is running and she hasn’t made it out if bed or to the bathroom on time. She is standing distraught but with refined dignity next to her bed, her PJ bottoms covered in watery shit waiting for a nurse to come and help. The shift is changing we will be along  just now, one says. For 30 minutes she stands next to her fouled bed waiting for assistance to the background sound of ow ow ow, oy oy oy, omg omg omg the pain. You marvel at her stoicism. She eventually ends up cleaned and in an adult nappy. The urine sample is still on your bedside table.

The birds husband has arrived, he kisses her tenderly on the cheek, he hugs her delicately. He is amazing. she has no idea who he is. he spends the whole day with her the regal lady says to you. he feeds her, holds her hand and talks to her. He is even more amazing. The ward is abuzz with doctors, nurses, cleaners, the tea lady pops in, breakfast arrives, noise, noise, noise, visitors for the regal queen, eight of them! ow ow ow, oy oy oy, omg omg omg, finally they put something in her drip there is a brief respite blessed silence from that side of the ward. 10am, doctor arrives, smelling of smoke and Old Spice again. Doctor can I please go home today you ask, you should be here another night he says. I can’t stay here you say, ow ow ow, oy oy oy, no no no, omg omg omg starts again, there is no way to rest here you say, looking pointedly in the other direction, just as they starting drilling and hammering in the offices next door. He nods, go home today he says with a sad smile, he understands. Spend a few days in bed he says.

Just after 12 your  lift arrives and you walk out the ward carrying your plastic shopping bag with toothbrush and paste , it so frenetic that you don’t think anyone has actually noticed until the sister comes charging after you with a pink discharge slip, don’t forget to pick up your meds at the dispensary she says and races away. Ow ow, oy oy oy, omg omg  omg falls away behind you, you go home to sleep and curl up with a 47 kilo dog.  The urine sample is still on the bedside table.