Wednesday, 9 April 2014

A post from Dion

I'm reposting this update from my old school friend Dion as I want as many people as possible to read it. It's my reason to swim, bike and run. And support.

"People regularly ask me what happens when Jodi is sick? I.e. What symptoms occur?
MS is a strange disease. It effects its victims in different ways. Jo deals with the daily aches, pains, tingles, forgetfulness and fatigue well, in fact, people are often surprised when they find out she has MS. If I had a dollar for every time someone said, “Oh really? She looks fine?”, I wouldn’t need to host a GoFundMe page. Maybe that’s the problem, maybe she just doesn’t look sick enough?

At times when Jodi is really ill, she hides away from society, normally too tired to leave our bed, let alone host friends. However, on her recent month long stay in hospital, many visitors got to witness the Jodi that Rachel, Abbey and I often see. The zombie-esque Jodi, high on a cocktail of drugs that are required to quell her MS symptoms, minimise pain and assist her to sleep to get through the next day.

This disorder has introduced me to a world of things I never expected to deal with in this life. Constant shopping to replace the broken plates & glasses, smashed due to the loss of coordination. Fighting with the people I like to call the “ACROD Police”. Those who make visual judgements on whether Jodi is really entitled to an ACROD bay at the supermarket (despite having one displayed) and want to fight me when I tell them what I think of their visual appearance in my own special way. The role of “bathroom door counsellor”. Yep, thats right, I have had times (especially in the early days) where I have had to stand outside the bathroom door for hours, listening to Jodi cry as she tries to build up the courage to give herself that daily injection. Hopelessly trying to convey words of advice and encouragement for her to “just do it quickly”, “it won’t hurt” or to, “think of something else”. All those tidbits of encouragement that I never believed, necessary for her to carry out something that I would struggle with doing myself. The role of “toe holder”. See, Jodi is claustrophobic and terrified of MRI’s. Unfortunately that is a common way for neurologists to monitor the progression of the disease. So against the radiologists better advice I would put on my radiation fall out jacket and hold onto Jodi’s toe, the only part of her body sticking out of the machine. Oh, and then there were the lumber punctures. I shudder to even recall the thoughts.

Still to this day I hear stories of the “funny” things Jodi did or said in hospital. The crazy texts received from a bored patient who went in to hospital suffering the MS symptom of temporary blindness. It is the not so funny things that seem to stick in my mind. The times I have sat up with the kids whilst they cried through the night because, even though they know Mum was "drugged up", they never thought she wouldn’t recognise them. The manic screaming from Jodi to “get her off of me” and “who is that” that reduced Abbey to tears for days. The scared sensation of watching your wife unable to feed herself. That helpless feeling of watching your wife admit defeat at times when she is too weak to even pretend to be strong. Probably the one thing that I found hardest of all was trying to settle Abbey down after she came home from school one day. One kid had asked if Abbeys mum was better. Abbey said, "no, she’s still very sick in hospital". The young boy said, “she will probably die. My grand dad died and he was only in hospital for 2 weeks”. That part shook her up. His grand dad died after 2 weeks in hospital and Mum was already up to 3 weeks? I explained that different people go to hospital for different reasons etc, not all die. She bought it. But what happened next still replays loudly in my brain in a way I can’t seem to forget. Abbey, placid, tiny, 6 year old Abbey, called me out. She looked at me with a face of pure hatred and said, “You said your job is to protect us, that you wouldn’t let anything happen to your girls, SO FIX MUM!” in a scream that still shakes me up. So that is how this page got the title of “Fix Jo In Moscow”. I told Abbey I would FIX it and FIX it is what Im going to do!

I can post this picture because I'm currently 4000km’s from home, just outside of Jodi’s reach. I don’t post it to embarrass her but more so to show those people who haven’t seen Jodi during the hard times, just what they are missing out on. This is the reality of MS. It needs to be FIXED! "

You can support Jodi by crowdfunding for her treatment at