Everyday Challenges

It’s almost 2 years I’ve lived with this wretched disease. For the most part, I am doing really well. Surprisingly well actually. Things I simply couldn’t do before, have become normal everyday tasks. Which is pretty awesome! Although some areas of my brain have turned into scar tissue, which will never repair, somehow, my body  has discovered new ways and new pathways to avoid the damaged areas of my brain. This concept of neuroplasticity fascinates me!

There are some things though that I have just learnt to avoid. For example, I rarely venture out at night, I sleep instead. I know the exact location of every public toilet of the places I go. I avoid crowds; as any MS’er or NMO’er will tell you, crowds scares the shit out of us! Crowds make me feel disorientated and dizzy and constantly like I’m falling or going to fall. It’s easy to avoid these things mostly, except when your team is playing in a final!

I desperately wanted to go see theFremantle Dockers first final on the weekend. But it scares me! In the spirit of not giving up, or letting NMO win, I decided that if I got tickets, then I would be there, screaming for my team!

A few things happened at the game.

Firstly, it was super crowded, of course! Just at the moment when walking with thousands of people was too hard, when wanting to turn around and go home, Clint would instinctively know I was struggling and reach for my hand, or by putting his hand on my back guide me through the crowds. He would get the beers, knowing that I’d probably spill them all anyway:) and he happily waits for me to sing the team song and hang around until the crowds have gone and we can walk out peacefully. He’s a pretty good egg!

Secondly, and not so positively…. the lines for the toilets were pretty long. There’s nothing I enjoy less than catheterising in a public toilet but sometimes it’s just got to be done! It still takes me a while to get the job done because understandably, I want to do it right and avoid infection. When I came out of the toilet, a women has a go at me for taking so long, and “now she’s missed some of the game!”

Moving on, I’m not having a whinge. I guess the point of this is to give some perspective. It was a really big effort for me to go, and totally worth it. I’m just asking, before you open your mouth and speak, think about it. For some people seemingly small tasks are astronomical. Before your push past someone walking too slow in front you, think and exercise some patience, maybe things aren’t as easy for them. Everyone is fighting their own battle after all!IMG_3715

Also, cross your fingers and toes for me, have a scan coming up in a few weeks. Hoping for no new lesions!!!


One thought on “Everyday Challenges

  1. Sue says:

    great writing again Jess. I really hope that you will be at the next game! Is it the crowds or lack of tickets that will stop you? Because if it’s tickets let me know… Looks like being an interesting couple of weeks ..go Dockers!!!


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