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.

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.

Peeing in a Cup

Like I said, I have had a really nasty couple weeks which have really tested my composure and my spirit.
I told my friend last week, "I'm going to cry a lot between now and the end of the summer, just so you're prepared for it." Of course, the odds of me crying in front of my friends are pretty slim; I've had a few chokey moments lately especially when talking about my eyes, but by large, I've kept the emotional meltdowns fairly private. I find it much harder for me to manage my life when I have to do it in front of people.
I seem to save all my reactions for the medical personnel. I was pretty even-keeled when this all started, but I just don't have the energy or emotional fortitude to keep it up lately.
Yesterday's fun was hearing about how I have a (now confirmed) kidney infection. Why this prompts me to cry in my car before I drive home, I don't know. I suppose there's just something about having to pee in a cup everyday for the next 4 days.

For the past year or so, the vision in my right eye has really deteriorated and I have trouble keeping my right eye from shaking. I saw another specialist last week who had me do a number of tests, some being quite uncomfortable. Apparently there's not much they can do, other then to continue some very expensive vitamins.
My five year old niece said to me a few days ago, "Auntie, when you go blind, I promise to take care of you. It doesn't matter to me whether you can see. I'll explain all my pictures to you so it's like you can see." Well, I started to cry. Who wouldn't? I love her so much.

All I Want is Sleeeeeeep!

Not surprisingly, I didn't sleep much last night. My right leg was KILLING me, burning and tingling all night. The only relief: Standing. Well, I can't stand all night, ya know! I was exhausted. I fell asleep momentarily leaning against the wall, sometime around 4am. Between the pain in my leg and the nausea, popping a few Gravol didn't seem like a bad idea. About 30 minutes later, I didn't care about the pain. Because I was (finally!) out cold. Merci Dieu.

All That and More

I wonder if MS has completed the process of completely isolating me from any sort of relationship. I don't really know how to talk about it. When would I bring it up? If they like me it won't matter, right? Well it matters to me. It matters that I feel more damaged now then I did before. It was difficult enough before to attract any interest. Now I'm not only under-educated, early-20's, somewhat difficult woman, I'm all of that with MS as well.

Nap time!

"I am Angry"

You know what? While I'm at it...


I am angry.

I know all of it - I know there are people out there who have it worse then me. I know that being angry doesn't help me get better. I know that it's not healthy to wallow in negativity.
I also know that I don't care about any of that right now. Multiple sclerosis has stolen something from me, many things, actually. I am angry about these things that I have lost (like, feeling good and thinking clearly).
I'm not blaming anyone for this, although this might be easier (any takers?). I am really sorry if I lash out at you (sorry mum!) or turn away from you (sorry sisters!). I will come back. I need patience more than anything, and maybe a little space to finish this round of the fight.

"I am Tired"

I have had a particularly terrible week.

I am not feeling thankful right now. I do not feel like counting my blessings. I don't feel grateful. And if you try and point out any of those things, in my mental state, I am much more likely to punch you in the face than nod along in agreement.
My MS has taken me on a roller coaster ride lately. I've been caught off guard by symptoms and if I was to tell people about my MS that very second, they would think that I was completely unable to cope. But there are moments where I am truly feeling okay (comparatively) and when I talk about my MS at those times, it comes across as really no big deal, which is also far from accurate.
It takes a huge bite out of my confidence when I am unable to express myself in a way that makes me proud of myself. I have a really hard time communicating what is happening to me, especially if I am having a bad day. Like today. And yesterday.


"I am tired"

Saying the words "I am tired" isn't really accurate. That is because the words to describe exactly how I feel don't seem to exist. I could use all the metaphors to relate it to something you might have felt in the past (jet lag with a huge hang over), but really, they fall short. Attempts to put words together might come across to you as overly dramatic or exaggerated - And knowing that you thought that would only make me feel worse.
Let's put it like this: When I feel this way I am unable to think clearly. I am dizzy. I am nauseated. I cannot fake my way through this type of exhaustion.
I am telling you this because I want you to know about this aspect of multiple sclerosis, which, unfortunately is also a part of me. This will not last forever. I will have times when I feel normal again. I will be more functional. Until then, I need some acceptance. I know this is also frustrating for you. I have not forgotten about you.

Ta DA!

For all my followers from my last blog, this is my new one. The last one had issues. muah!