MS is painful. Period.

In case you haven't noticed, MS is very painful. And if you haven't noticed, either don't have MS or don't spend enough time with me. It's hard to believe that up until the 1980's, it was considered a painless condition. I have been struggling to figure how or why anyone could make that claim, as pain - in many MANY different forms - has been one of the worst symptoms of my MS.
We all have our good days and our bad days. For me, good days are the ones where I don't have a symptom that was bad enough to be memorable a week later, as opposed to those yucky ones that I have just learned to live with. All I can say is that some of my pain symptoms have seared themselves into my memory so well that I can remember them months, even years later, including specific circumstances of what I was doing and where I was when I felt that degree of pain.
It's that "hard-to-catch-my-breath" pain - deep, dull aches in my legs and back where my clothes touching me feel like stinging insects; and "screaming-out-loud" (literally) pain from the nerve damage in my face from the Trigeminal Neuralgia.
Because of MS, I have fallen, run into doors, bumped into tables, cut myself badly, spilled hot drinks on me, slipped in the shower... However most people say it's because I'm klutzy. I guess it would be a stretch to include the pain from the confinement in MRI tubes or side-effects from my medications, but all those things hurt, too.

MS is painful.

I'm Just Not Ready

I wish I had some meaningful story to write here that would make it obvious to everyone that I have beat any negative emotions about having MS. I would love to be so zen-like about the whole thing that you would feel my words glowing and radiating love and acceptance, showing that I have reached true happiness and that I am at peace with my MS and see the destruction that is being unleashed in my body as part of a bigger, universal plan.
Well, the words aren't glowing, because that isn't the case. I am far from serene about this whole friggin' mess. I'm angry and hateful at times. I lash out at the ones I love most in the world at the very times that am feeling lonely and scared and in need of love. I withdraw, I cry and I feel sorry for myself. I lie to myself about all the fabulous physical feats that I could have performed and career paths that could have lead me to greatness, if only it wasn't for MS messing it all up. Then, much like I feel after watching the news or certain reality shows, I get tired of myself and that whole storyline. I need some relief from the anger that I can't seem to get away from. I need to find something about myself to be proud of, before my hatred of this disease becomes difficult to separate from everything good in my life. I've found few ways to look outside myself- I pray, I bake, I read, I play Barbies with my 3 year old niece.
I am not ready to wholeheartedly embrace the idea that MS is a blessing in my life. And I don't know when or if that time will come but I'm trying to take it one step at a time.

Because I Don't Look Sick

I’m constantly reminded of the phrase “looks can be deceiving” because I live it everyday. I will continue to push myself until something gives, whether that be THE system or MY system, because I just don’t have any other choice right now.

Because I don’t look sick.

Cool, Calm, Collected.

So, I'm not leaving the city.
I seriously contemplated this with the recent summer temperatures hovering around 27c during the day making it virtually impossible for me to nap (or sleep), but, thanks to my wonderful Auntie Betty, I have an AIR CONDITIONER. And it makes a huge difference in the way I sleep. I'm now not stressed about nap time, bedtime or the impending 'heatwave' Vancouver gets every August. Although, everyone is going to want to sleep in my bed now. Be careful, I cuddle. I spend most of my time in my room now but my laundry seems to get folded, and I'm cool (in more ways than one).

It Is What It Is.

It has been said by many people that I am a very good actress. "But you don't look sick" seems to be all I hear. Is this a good thing? Most times I take it for the complement that it is, all the while smiling, knowing exactly what it doesn't mean. I "act" like a healthy person the best I can. I take on this role as if I will someday win an award for the best portrayal of a healthy person. The downside is that there is no trophy, there is no prize and I just end up alone with my feelings and everything I've kept inside. I act like I don't care- but I do. I act like I'm not scared- but I am.

The truth is, if I was to ask you to hang out with me- I know I would not be your first choice. I know I disappoint people. And despite the smile, I know I can be quite the downer. I am not saying this to gain sympathy. It is what it is.

A Love/Hate Relationship

I do love my life, but I hate a lot of things lately.


I hate popping pills, and having people ask me personal health questions that I don’t want to answer.

I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.

I hate living up to other people’s expectations of what a healthy person should be.

I hate living up to other people’s expectations of what being sick is.

I hate never feeling good enough, quick enough, pretty enough, or just “enough”.

I hate the term “damaged goods”.

I hate that no matter how hard people try, (or don’t try) they will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills and energy.

I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have PMS cramps”, or even better… “I have a cold… I am DYYYYYING!”. These expressions need to be banned, because they do not adequately describe how you are feeling. (And I'm sorry if I don't sound sympathetic when you tell me about you "killer" back pain.)

I hate having to defend that I am a good daughter, sister, auntie or friend.

Most of all, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.

Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it.


God gives us only what we can handle, but sometimes I wonder if He confused me with someone else.


I'm not all hate-

I love my friends for loving me, even though I don't always deserve it.

I love having at least a few people in my life that try so hard to understand my disease and the way it affects me.

I love Aimee for massaging my sore, achy body when I need it most.

I love Nathalie and Nathan for giving me a bed that has made a world of a difference in the quality of sleep I get.

I love Candice, who always makes time to be my personal therapist.

I love Colleen and Camster for always welcoming me into their home when I need a break from... Life.

I love my Auntie Betty for her over-abundance of love and support.

I love my Peanut for keeping me company on the bathroom floor at 3am.

And I really love my mommy and my Johnny for fighting alongside me every single day.

@%$# ?% @&%*

Yesterday when I woke up, I had to pee like a champion. This is nothing new; something like 99% of the population has to pee first thing in the morning.
Last week, my GP gave me a prescription for antibiotics to treat a lower respiratory infection. I cough like CRAZY when I lay down but this time, as I peed, I coughed. Hard. And whatever dislodged in my chest also did some damage down there because there was sudden sharp pain. It felt like a tear. Can you even tear your urethra by peeing really hard?

Peeing post-cough hurt really bad, akin to peeing with massive kidney stones (a sensation I am all too familiar with). I was teary-eyed but the pain went away the instant I stopped peeing, so I figured all was good and went about my morning business.

Later on, I drank a large bottle of water and an equally large bottle of OJ . Naturally, I then had to pee.

@%$# ?% @&%*


It HURT. It hurt a lot. I made my knee bleed from digging my nails into it. Also, there was blood in the toilet. I am worried and convinced that I have done some damage to my hoo-ha with nothing more than a particularly nasty cough.

It would be GREAT if I could have a day off from pain or other dilemmas. For those of you who think being sick isn't a full-time job, imagine never getting a coffee break or accumulating vacation time.