so one of the main issues that come along with living with MS is that i don’t actually look sick. in the past year or so since MS has become more front and centre in my life and i have had to tell people that i have the disease, people who have known me for 10 years that didn’t know i had it have inevitably responded with surprise. i just don’t look sick (though some would argue differently but that’s another story for another time…)
last year, for example, when we went to disney for a week, i needed to rent a scooter in order to get through each day. and the disney people took real good care of people with mobility issues. i’d always get loaded on the bus first, and they’d have to strap in the scooter, and then i’d stand up and walk to my seat and sit down with everyone else. this would hold things up about 5 minutes every time we got on or off a bus.
a few times, after i got up and walked to my seat, i’d hear people mutter under their breath that if i could walk then why do i need the scooter. they thought i was likely faking it in order to get to the head of the lines or because i was too lazy to walk. i was so incredibly self conscious of this that i at times even ended up faking a limp from the scooter to the seat in order to prove my worthiness to the people that i was holding up. brutal.
so even though i don’t look sick (again, no comments from the peanut gallery please), i’m sick.
So what exactly are the effects that MS has on my life right now?
1. my hands and feet are numb. i have not really felt my hands for 13 years. and the degree of numbness depends on my level of health which is often dictated by a combination of stress, the weather, and how well i’m eating and exercising.
2. fatigue. some days, especially in the afternoons which is why i like to be working at my desk by 7am on many days so that i can get some good work done, i get swallowed up by fatigue. i simply cannot function. my whole body screams at me to lie down and stop everything.
3. brain fog. whilst i have accomplished a whole lot in the 13 years of living with MS including opening a shelter, starting social purpose businesses, getting married and raising a daughter (well she’s only 7 but so far so good), and finishing a masters degree, i have a brutal struggle with my short term memory. if it weren’t for the wonderful inventions of blackberrys and palm pilots and yes, even the iphone, i wouldn’t know where i was supposed to be next half the time. i forget a lot of stuff. i have very little recollection of my childhood. i forget people that i’ve known for long periods of time in my life. i forget things that me and erinn have done together. i forget stuff. and that scares the crap out of me sometimes.
4. my bladder doesn’t work right. i retain urine. so when my body tells me i need to pee, which is often, i have about 2 minutes before i will pee no matter if i’m at a toilet or not. so, while i ride my bike to work or drive on the highway, more times than i care to remember i have needed to stop and hopefully find an alley or a relatively private place to go. and also more times than i care to remember, i haven’t been able to make it to a private enough place and so i have had an ‘accident’. not that long ago as i was cycling to work, i had to stop in an alley and while i was ‘going’, a self righteous woman came out her door and yelled at me for peeing on her neighbours dumpster. it took everything in me not to punch her in the face. but instead, i just told her i was really desperate and she replied by telling me that i should have gone before i left the house. again, i wanted to punch her in the face but instead i thanked her for the advice and rode away. (and secretly wished that she got struck down with the worst bladder infection of all time)
this whole bladder thing effects me in so many ways. i’m terrified of going on airplanes and dehydrate myself before i get on board. as a public speaker, i often feel the need to tell my audience that i might need to go pee at some point in the middle of my address. sometimes i’ve forgotten to tell them that and have needed to leave and tell the audience that i’d be back in a few minutes. if i go to a theatre i need to sit on the aisle to have easy access to the exit. i’m constantly scouting for where the nearest washroom is. i far too often have been forced to buy a drink somewhere so i could use the ‘customer’ washroom. i’ve made my way to important meetings and have had ‘accidents’ along the way that have forced me to go home and miss these meetings. i have to get up an average of 3 times per night to go to the bathroom (i haven’t slept through the night in 10 years). this one really sucks.
5. my legs are failing me. i can no longer run or even jog. i can no longer walk for more than a kilometer (on a really good day). i can no longer stand up for more than 8-10 minutes without having to sit down.
6. i have the MS hug. it always feels as though i am wearing a girdle around my stomach that is being tightened. that tightening is again dependant on my level of health.
7. spasms. at night i spasm. sometimes my leg will straighten out and i will have no control over it. sometimes that really hurts as every muscle clenches when that happens. sometimes my whole body spasms and i straighten out and every muscle in my whole body clenches. sometimes when i sleep on my side my knees will bend and fly up to my stomach/chest and i cannot do anything about it but wait for it to end. sometimes when i stand up in the middle of the day, i can’t take a step without waiting for my legs to spasm and let me keep going. no fun.
8. MS has only allowed us the one child. cate has been the most amazing and wonderful gift to us. but we both would dearly love to have had a second child. it was simply not to be, due to the disease.
so i’m listing these things because the procedure that i will have done in exactly 2 weeks, known as the liberation treatment which is so perfectly named considering the bondage that MS has had me and my family in, has been known to alleviate every single one of these issues.
and i want it to work so desperately.
just to sleep through the night for once would be such a gift. to play tag with my daughter would be worth more to me than any money. to travel to nyc with erinn and walk all day through manhattan would be a dream come true. (which if this works will be the next thing on our list)
in 2 weeks we’ll know.
So my prayer this day is this:
Lord, while I know that my issues are so infinitesimally small compared to all that is wrong with the world today
i know that you still love and care for me and my family as much as you do for everyone and everything else.
and while my prayer still remains ‘your will be done’, I so desperately want your will to be that I get set free from this disease
2 thoughts on “June 10 Update”
Thanks again for this friend!
I had no idea of what you have been living with and would have been afraid to ask.
I join with you in the earnest prayer that his will would include you're being set free from this disease.
Thank you for being so transparent. dk