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.

I Just Can't Right Now

We have words to explain every shade of grey. We have words to explain just about anything and everything.
That is, until I am really desperate to get my point across because I am under physical or emotional distress caused by one symptom or another - at the time that I need to explain things accurately, in a way that people will understand and react with empathy, my words seem to completely abandon me. I'm always telling my nieces to "use their words", yet I easily find myself flapping my hands around when trying to explain a particular emotion to my mum or a friend, with the only words at my disposal being "Fix it." or "Go. A. Way. Now."


I Just Can't Right Now

I find myself having to say no to a lot of people lately. There are numerous things (too many to mention) that I would love to do but just can't handle right now. I want to. I really do. I know it would be good for me to get out of the house and be with people and have fun. I want to be like a "normal" person and make plans and keep them. I want little outings to be fun and not fill me with dread. I want to be the person who says "Come on! What are you waiting for?!" as I beat you out the door.
But I just can't sometimes. I'm sorry. Maybe next time. Ask me again, please.

Go Figure

I would like to think that I do not let my MS define me as a person. However, I have noticed something interesting - the relationships in which my MS is acknowledged are the healthiest and most nurturing relationships that I have. These are the spaces that I can be tired if I want, shaky if I happen to be shaky, or confused and slow - and it is okay. You know what else I noticed? That when I have that space to be tired, shaky and confused (and allllllll other sorts of gimpy), that I am less tired, shaky and confused than when I am trying to hide my symptoms or pretend that they really don't matter and that I am the same person that I have always been. Go figure.