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Kim’s Trek with Transverse Myelitis: Living in a fantasy

P.S. never give up

Whoa has it been a while since I have blogged! I know I haven’t lived up to the promise that I made in May to blog more but I’v had my reasons.I’ll let you decide whether they are good ones or not.

Let me start by saying that I am a summer gal in all ways so when the weather gets nice I have a tendency to spend most of my time outdoors swimming, biking, running, walking,sailing etc…you get the idea I am sure.The last thing on my mind was blogging when I am sitting on a terrace enjoying the summer with my gal pals. I have also been training CJAD’s Andrew Carter to run a half marathon. He is trying raise awareness for the CTMA and I have been on the air talking about TM. Because Andrew is running the half so I am…I know that I said no more marathons but the Montreal Rock n Roll Marathon committee would only open spaces for a special cases…guess what TMers are special cases…so if I didn’t run…Andrew didn’t get a spot. The first time I ever had to use the fact that I have TM to get special treatment…and believe me when I say….I hate it!!! but I remind myself its getting me what I want so I should just shut up and kill my pride for once.(I should leave this for another post entirely)

In mid July I also started a new job, which I was very exited about getting. It allows me to work from home and I am just over the moon about that…no more dealing with Montreal traffic every morning and late afternoon.But you know how it is when you start a new job…there are a ton of things to learn, catch up on and this job was no exception.

Everything in my life was really going great and then in mid-July some extremely hot,humid weather hit Montreal and I went from training for a half marathon, biking, swimming to barely being able to get through a day. I basically got hit with every TM symptom at once…and I got hit hard…blind sided…yes even though I know I have TM…I feel like I was blind sided.

I went from being so close to normal to devastation in about 4 days. My runs were terribly hard as my left leg suffered terrible weakness,paraparesis and neuropathy. I had banding that lasted for hours on end,prevented me from sleeping and woke me up at odd hours of the night.My levels of pain and fatigue went through the roof and it took every bit of mental strength not to break down emotionally, not to feel angry that this ever happened to me and that I was diagnosed with TM.

The only thing that saved me from breaking down was that I could still run and the knowledge that better days would soon be ahead.But even at that, I found it tough mentally to stay the course,have faith and not run to the phone and call my neurologist. Sure enough last week things started to get better and while I am still in incredible pain I can see the light and this is a good thing. But in all of this; I have discovered that being so close to normal is very difficult, what do I mean by that??? well I have these periods (like after running the Halifax Marathon) where I can perform on such a normal level that I get into this almost fantasy where I forget about TM and it is so easy because I am just flying around demanding such athletics from my body and its doing it!! so I live this unreal fantasy that it is gone…TM is gone but the truth is, it’ll never be gone until my spinal cord can be fixed. Until that day comes, I will always live in and out of this self created fantasy where I am normal but get sobering wake calls from TM.

Is this healthy??? unhealthy???a denial on my part??? I don’t know but I have said this before…its easy to want to forget the incredible tough times in our lives,I am no exception. I think the toughest thing is that I have these euphoric periods where I am so close to normal physically that I can get lost in them, I am on a high, and the crash is great when TM strikes.

The fact that I can still do a ton of physically demanding things during these TM raids is something-I don’t know if its a testament to my stubbornness,determination or madness. But I do know that there is something inside of me that keeps myself mentally motivated to not give up and not give in…and while this disease tests my resolve…in the end it never breaks it.

I just want to thank my grandfather…for giving me such a stellar example of strength and grace in living life and in dealing with the toughest of times.I could not have made it through all of this without it to draw from and I hope he is looking down proudly.

Today’s thought:”People often say that motivation doesn’t last; well neither does bathing-that’s why we recommend it daily.”- Zig Ziglar

via Kim’s Trek with Transverse Myelitis: Living in a fantasy.

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