The Four Hour Work Week Project – Allison Reynolds

Read Ten Years Ago part 1
Read Ten Years Ago part 2

After a lot of huffing and puffing my nipple ring was finally extracted (and ultimately lost), I was quite sad about that, and even more so later on when I realised I would never get it done again as I required MRIs every now and then. Into the MRI I went and while I quite enjoy being in enclosed spaces, being told not to swallow for minutes at a time was a real exercise in mental control. Try it some time.

Next came admission and my first night in acute care. The next day brought some surprises. Firstly I could no longer walk at all,  I felt like an octopus with legs like string. No matter what I told them to do they would just flail about weakly not supporting my weight.

Then came a morning of tests by my neurologist that found that I had no sensation in my scalp, face and other places on my body. The biggest shock came when she asked me to raise my arms above my head. Brain said “arms go up”…arms went to about shoulder height and stopped, then flopped back down. I looked at them dumbly as they too were now traitors to me. I seem to remember letting out a “Woah!”.

My swift deterioration made me a cause celebre in the neurology department and I was asked if I minded being “presented” at some discussion thing at the hospital. Always the good girl I said yes, of course. Anything to help science and all of that.

Then I had visitors, my kids. I hadn’t asked for them to come but their father had a minor panic attack when someone rang him and told him I was in acute care. I really didn’t want them to see me in hospital as it was going to freak them out (they were 10 and 8). When they turned up I was less than polite to their father, looking back I can see that he was concerned, but he didn’t bother to check with me and I was pretty sure this was all going to be a big mistake and I would be released really soon. Still they seemed to enjoy pushing me around in my chair.

That afternoon I went off for one of those really fun things, a lumbar puncture. If you have ever watched House MD. you will know that people wince when a needle is inserted into your spine to withdraw spinal fluid. Of all the things I have had done to my body, my least favourite thing is a lumbar puncture…very very unpleasant. Especially when the punturer announces that they hit a blood vessel and not only I was bleeding, but if the blood has contaminated the sample too much they will need to do another.

The next day saw questions about the possibility of me having AIDS. This finally flipped me out and I totally freaked. I rang my mother in tears and asked her to come (when things get bad I need my mum). She dropped everything and was there within an hour. She calmed me down, told me that whatever was wrong with me we would deal with it like we always did, and that until a diagnosis was made I just had to roll with the punches as they ruled everything out. She tried to get more information from the medical staff but they were being very tight lipped (because they still had no idea).

That night I was hooked up to a mega dose steroid drip. Whether the dose was wrong, or I was sensitive to the drugs but my veins felt like acid was going in and I cried some more and asked the nurses for pain relief (and I NEVER ask for pain relief…yeah i was one of those crazy martyrs). They gave me the bad news that all they could give me was paracetamol as they had no authority to give anything stronger. That night was agonising and I bore it by crying quietly all night rather than make a scene and demand help.

My final day in hospital was really strange. The neurologist on duty came to see me and said “Good news, we know what you have it’s only Multiple Sclerosis” before I had time to absorb what that meant, he went on to say “We thought you may have had an aggressive tumour that would have seen you gone by Christmas”, he then told me that I wouldn’t need to be presented to their discussion thing as MS wasn’t very interesting (or that was how I heard it). I was to be released later in the day if the steroids had done their work, and I needed to do a visual acuity test to see if I had lost any sight.

And that was that… just like that.  I was given no information, no prognosis, nothing. Just a reminder to see my neurologist after I got out and see you later. 99% of what I have learned about MS I have learned through research rather than medical advice. But that is for another blog and another day.

A decade ago I learned that I had an uninteresting incurable auto-immune disease that would make the rest of my life even more unpredictable than the average person’s. Would I change having it for the lessons I have learned about myself in those 10 years, on a good day I say no, on a bad I say yes. I am still learning though, and that is the main thing.

‘Steel wheels @ Fishermans Wharf, Low…‘ by timparkinson via Flickr
Image is licenced under a Creative Commons Attribution licence