Thursday 26 January 2017

How MS Started for Me 3/5


7 - 31 December 2016

Note: I'm just writing this out for now (26 Jan 2017), just to "get it down", even in a rough draft form, complete with typos. Thanks.

MRI Brain and Spinal Scan at Bathurst - 7 December 2017

My specialist called me the next day, and told me to "go straight to hospital", as a result of the MRI. The demyelination in my spine it uncovered, needed to be explored straight away.

When I visited the Emergency Dept on the morning of 8 December 2017, I had 15 vials of blood taken for tests! One of them would be examined in Denmark! The pathology nurse laughed, as she held up the bag full of all the different-coloured blood-test vials, calling it "The Rainbow Collection"!

They got me a bed in the Medical ward at Bathurst Base Hospital, and put me in the 4-bed "Stroke Room". Even tho I hadn't had a stroke, it was (as far as they were concerned at the time) still a neurological (ie. nerve) problem that I was experiencing. There were three women also in the room... two of which had no problem with me sharing the room ( we all kept to ourselves etc). Tho there was one lady who used some classic passive-aggression toward me, simply because there was a man in the room! Basically - I didn't give a toss - nor did the staff. There was no problem really.

I was put on an intravenous dosage of steroids, to combat the spinal inflammation.

The next day, I happily moved into the next room along, which contained all male patients (much to the joy of the other lady diagonally-opposite me! lol). Thankfully, I slept well at night (I was lucky enough to get a newer-comfy-mattress bed), plus I kept my healthy appetite - even hospital food tasted good.

As most of my time there was just laying about, with a drip in my arm for an hour-or-so once a day, I did a lot of "laps" around the ward - walking around the corridors in the vicinity of the ward. They staff were happy for me to do that - 1.) it kept me occupied, 2.) the blood flow would help healing, and 3.) it helped keep me 'regular'! An added bonus was the amount of good people I was able to chat with, along the way. There were some of the cleaners who were always ready for a chat at any time of day.

One of my fellow room-mates was... well... he was a chatterbox. He obviously had no concept of 'personal boundaries', especially in a hospital situation. He would try to talk to everyone all the time - but he had an attention-span of about 10 seconds. He would literally start a conversation, and 10 seconds later, he would just not know what he was talking about - but he would just keep talking, anyways! Poor bugger... he was really harmless, but kinda annoying too... some of the staff were quite fed-up with him after a few days! He'd treat them like his hospital-stay was a game, or like he was staying in some bloody health resort!

Another guy was in an incredible amount of pain, and constant showering was the only way he could get any sense of relief - poor bugger! It turned out he was a massive "White Supremacist", and didn't have much positive to say about some pretty 'out there' concepts! But he was harmless, really... good to chat with from time to time, so long as we kept our talk pretty 'geneic' and general.

After the third day, I was aware that a lot of the numbness had begun to lessen, and even disappear, in various affected parts of my body. The steroids were obviously beginning to work for me. Spend a lot of time doing "laps", I noticed I could "tap-time" using my hands (kinda like 'air drums' on my thighs) - something I wasn't able to do a week before. Just being able to feel some ability to move both my arms much more freely again, was a huge relief.

You know when you begin to look forward to meal times, during your stay in hospital... they're the clock that gives you a sense of tie-passing. The Saturday seemed to fly by - I must have done a few hundred "laps", but I really wasn't aware of time seeming to pass by so quickly... I was feeling relatively chirpy. Tho I made sure I always kept out of the way of the staff, who always scurry about endlessly. My health care was superb - I had no complaints whatsoever.

I had some awesome visitors pop-in on the Sunday, which was really a huge bonus for me... plus a long phonecall from a friend who lives 900kms away was glorious for my psyche as well.

I was emotionally feeling fine, though the whole adventure! I experienced no "manic highs" that could've happened, thanks to the steroids. I felt actually quite happy and chirpy about it all, simply because I could see the slow progression of the loss of numbness, as the days moved along.

The Monday saw me undergo the dreaded "lumbar puncture"... the whole thought of the "spinal tap" was a whole lot worse that the actual procedure, to be honest. Tho it's never a pleasant thing to have done to you - altho both doctors were as gentle as anything.

After that procedure, I had to lay still, flat on my back, for three hours. I could have suffered some nasty side-effects (such as a terrible headache), but thankfully, I experienced nothing at all. I just had all the curtains pulled around my bed, put a cloth across my eyes (to mask the daytime light), and rested. No problems at all, thankfully.

Two hours into my laying flat on my back, the doctors told me I could go home later that afternoon, which excited me. Five days in hospital was quite enough, thank you! Those three hours really seemed to fly by, as when the doctors came back again then, seeing that I was quite fine - I was just busting for a leak!

As soon as I was allowed to, I got up to "spend a LARGE penny".. as soon as I got back to my bed, there was my short-term-memory neighbour chatterbox sitting on a chair next to my bed! I wasn't impressed, simply as I had just spent three hours in total quiet silence and isolation, so that i could recover properly. The silly bugger totally broke into my personal 'boundary; and I had to use all my gentle tact to ask him if he could kindly leave me space! He didn't mean no harm, but yeah - the second he knew that I was 'back in general circulation' again, he wanted to have a chat! Argh! lol. If that was the worst experience of my hospital stay - then I have nothing to talk abut, huh? hahaha.

The doctors did all their last checks etc, and I was home again by 6.30 Monday evening (12 Dec). I rang my brother straight away, and let my sons know I was back home (of course).

I felt fine, really... most of the numbness had passed, leaving me with just the pins'n'needles feels in my hands (rather than everywhere else). The first shower in your own bathroom... the first nights' sleep in your own bed... ahhhh! I think you know what i mean. I was tired (of course), but thankfully I was still feeling positive and happy with the way things were progressing. I knew not all of the doctor's question had been answered yet (there were still plenty of tests to come yet!), but there was a definite improvement from before I was admitted.

The next day (Tuesday 13 Dec), I had a visit with a local eye specialist, to make sure there was no nerve damage to my optic nerve (there was none, thankfully).

Three days later (16 December) saw my first visit with my neurologist (ie. nervous system specialist), in Orange (about a 45-minute drive from home). She was great - very approachable, and totally open with me about "what could be" and "what we don't know yet". There were still more tests to be done, and I would see her again in early January (2017).

I am very thankful to my Pengopuss jazz cohorts, for allowing me the privilege of continuing to pay with them. We had a few rehearsals, before we performed at a private function in Bathurst, the day before NYE. Because the numbness was so much less, I was able to (albeit awkwardly) play guitar - tho I had to gaffa-tape a pick to my right thumb, so i could play! I could barely feel the strings under my fingertips as I played, but it worked well for us all. Thanks guys... I honestly thought that it might be the very last time I ever perform live again!






Peas be with ewe 
Mal

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