Checking in

It’s been a while since I’ve posted anything here. Sorry! I guess I’ve been a bit preoccupied with other things. Mostly just not feeling well, and trying to figure it out. Ended up going back on a 5 day course of steroids a few weeks ago, which is never enjoyable, but I thankfully didn’t have too severe of side effects this time. So here I am now, just trying again to move forward and deal with other issues, like the back problems I’ve started having again on top of everything else. It can all feel overwhelming some times, but I’m trying my best to focus on other things. 

One example of other things, this weekend is the MS walk, happening across Canada! I’ll be going to the one in my hometown, just outside of Toronto, with some of my family, which is really cool. We’re going to volunteer and help out with whatever they need us to. I will most likely be at table handing out reading material or something like that.  This will be my first time attending the event, and I’m looking forward to seeing all of the people that are there to support the fight. It’ll be great to see some recognition and support for MS, which can sometimes feel like there is a lack of. 

So just trying again to stay positive, which some days is harder to do than others, but all I can do is try!

One day at a time 

M

MyStory 

  

Back in the summer, I helped put together the filming of a great video project with the MS Society of Canada, aimed to reach out to young people with, and affected by MS. We shot these at my old film school with the help of some great volunteers, and I was really happy to be a part of it. I was able to do a few of the interviews, and was even on camera a little bit myself, which is not my usual area of expertise! 

The campaign finally launched today, and I’m so proud to be able share it with you all! One of the first videos being featured is the story of Billy Talent drummer Aaron Solowoniuk (https://youtube.com/watch?feature=youtu.be&v=zG3CKDhlDLs) but there are many more to come, and all being hosted on a great site that my very own brother kindly volunteered his time to create (http://mystory.someonelikeme.ca)

Please check it out, and share with anyone you think may benefit from it!

M

Just as confusing as ever!

Kinda in a weird place with my MS right now. Really thought I was relapsing, when I had a sudden onset of worsening symptoms, especially since I haven’t been on meds for about a month and a half now. I just felt off, all of my regular symptoms are just way worse than normal for me. I’ve been having trouble walking again, severe fatigue, spasms, etc. Not fun! But, I’ve also been dealing with a mild infection,  I was sorta hoping that was just exacerbating things, but I’ve also had worse infections and not felt nearly this bad from them, so who knows. I’m trying to remember that with MS it’s always different, but doctors confusing me more doesn’t really help things. My family doctor swears this type of infection wouldn’t cause trouble with my MS, and my MS clinic says that maybe it would. They won’t treat me for a flare (if that’s what it is) while I have an infection, which is fine, because I hate steroids enough and wouldn’t want to make their side effects any worse, but it would also be nice if they would take me seriously and not just brush it off. Almost done the antibiotics now and things don’t really seem to be getting better, but I’m trying to not worry and just see what happens (which I’m not great at) because only time will tell. 2 and a half years in and this disease is just as confusing as ever!

It’s hard feeling awful and not knowing what’s going on. It makes me feel helpless, which is never easy, and I know that the people in my life must feel that way too.. helpless. Which I wish wasn’t the case.  There’s not much anyone can do right now, so…I wait. Feeling kind of stuck in limbo as they say, but trying not to let it get me down. 

On the bright side, I finally start on my new MS meds on Monday, tecfidera, and while I know it isn’t going to magic mike (ha!) things away, I have hope that eventually I’ll start to notice something positive from it! But for now, I just wait for all of this to pass. Wait and watch a lot of bad TV ;)

Tick toc silly symptoms!

M

Sarasota!

Hello from sunny Sarasota! I’m here on a little vacation with my family, and it’s lovely here. Definitely nice to get away from the cold, rainy Toronto weather! My sister and I got here yesterday afternoon, after a very early morning, and very little sleep (which my body does not enjoy to say the least) but we made it, with some wheelchair assistance to help me get through the airports, I’m just not good with long lines and all that airport walking, so I always ask for the wheelchair ahead of time when I travel now. After we arrived, we met up with the parents, who have already been here for a few days, and here we are, ready to soak it up!

I’ve never been to this part of Florida before so I didn’t really know what to expect, but so far so good! We’re staying in a condo in an area called Siesta Key, and some of our family friends are staying in the same building. Last night we had a build your own pizza night, and even though I had to excuse myself a bit early to head to bed after the long day, it was nice! Today we’ve been spending the day on the beach, which I was a bit worried about, but there’s a little shaded area and a nice breeze so I’m not getting overheated. This seems to be the right time of year for me to be here!

Tonight we’re going to check out the local drum circle on the main beach, apparently hundreds of people show up and dance and drum away! Then  tomorrow we’re off for massages, and more relaxtion, which is never a bad thing. And neither are views like this

Now that, I could get used to.

M

 

Fatigue

Fatigue is a symptom that a lot of people with MS struggle with at some point. For me it seems to vary. Sometimes it’s worse, sometimes it’s not as bad. Right now, it’s worse. This is one of those symptoms that people have trouble understanding. Fatigue is not the same as feeling sleepy. Fatigue is much more than just something a quick nap will cure. For me, it’s like my mind is half asleep and doesn’t want to work properly, and my body is off hibernating somewhere. It’s hard, and it’s frustrating, and it can leave me an emotional mess at times. There are medications that doctors prescribe for this, but none have helped me yet, and it’s a bit of a guessing game if any will.

I have, for as long as I can remember, had issues with sleep. I’ve always had a hard time falling, and staying asleep, which really doesn’t help my fatigue situation. I never really feel rested when I wake up, but sometimes it’s even worse and I wake up feeling like I haven’t slept in days. Now I don’t know if you have ever actually gone a couple of days without sleeping, but try to imagine what you would feel like if you did. You would probably be pretty grumpy, wouldn’t you? Pretty groggy? Well I feel like that, but my body also just feels heavy, slow and sore, and my head is a foggy mess. It’s like I’m walking through the day in a haze.  Sometimes I have to make myself get out of bed in the morning, though all I want to do is curl up in a ball and sleep the day away. Having sleep issues seperate from this has been making this desire to keep sleeping impossible however, my body has been deciding that it’s time to wake up, even though I’m still exhausted, and not allowing me to get back to sleep. Right now I’ve been laying in bed for the last 2+ hours trying to get back to sleep. Can’t sleep. Can’t get up. So here I am writing this. (And hopefully it makes some sense!)

Anyways, I think I just wanted to write this to explain it as best as I could. It’s hard when no one understands what I mean, or asks me why im so tired, or try to say that they feel that way too. You don’t. It’s different. Thanks for trying to relate, but it’s different. Sometimes people with MS, or other chronic illnesses, just need a little understanding, and to be cut a little slack in this department. Sometimes we might have to cancel plans, or try to get through them anyways but aren’t completely there. Every day is different. It bugs me when people say things like “well you were fine the other day!”. What difference does that make? Yesterday I was tired, and went through with my plans for they day anyways, tried my best to get through it, and today I’m exhausted.  Just writing this is taking everything I have. Every day is different, and unpredictable. Today is t great, but hopefully tomorrow will be better. 

One day at a time. 

M

 

 

Another year older

Yesterday was my 27th birthday. It feels strange to say, not because I think 27 is particularly old, but it just sounds more grown up than I feel. I’ve come to realize that this might just be how it is for everyone now. I’m not sure if anyone ever really feels like an adult, I think we all just try our best to make adult-like decisions… Really we just live in a world full of big babies trying their best to make it work!

I spent a lot of my 26th year of life down in the dumps so to speak. I spent a lot of time worrying about the future, and hoping for some kind of big guesture by the universe to show me the right path in life. That never came, and I think now I see I have to find this for myself. Sometimes I  struggle a bit with staying motivated, but this year I want to try my best to keep moving forward, in spite of all the hard things life has thrown at me. I never want to let this MS beat me! By this time next year, I want to feel like I’ve continued to push myself, and spent the year productively, whatever that ends up being! 

Hoping for a great 27th year, filled with exciting new experiences and positivity! Oh and of course, more traveling :)

M

The return of the travelling MSer..À Montréal!



Bonjour blogosphere! 

I’ve just returned home from a few nights away with the boyfriend in Montreal, and it was a great little getaway! It definitely helped scratch that travel itch a little bit. While the weather wasn’t any better than at home (-35 with the windchill when we got there!) it was still good to get out of Toronto for a little while. 

Now the trip didn’t really start off that smoothly due to a silly mistake by me. I got us a great deal on the train… Just in March instead of February.. Oops! Thankfully though they were able to get us on one that day instead, for a hefty fee, but it was worth it! When we got to Montreal, we also ended up having to switch hotels as the first one was really gross, and nothing like it was advertised as. Not much I hate more than a dirty hotel room! But we got it all figured out in the end and started on our mini vacation, with lots of eating, drinking, and relaxing! 

Let’s talk a bit more about the eating.  Montreal is a food city! And being the “foodie” that I am, I was excited to try some new places. I think my favourite was on our first night. We went to an Egyptian restaurant near our hotel called “La Folie du Koshary”. It was great! Really inexpensive little place, with delicious food and friendly staff. Another highlight was of course the smoked meat. We went for a sandwich at Ruebens deli downtown. I was a bit skeptical of going anywhere other than the famous Schwartz’s deli for this but I was happy with it! And it was easier for us to get to as Schwartz’s is a bit out of the way from the downtown core. 

I suppose we also did a couple other activities, other than eating. Since it was so cold, one of my favourite things was the Scandinavian baths at a local spa! They called it the “thermal experience”, where you’re supposed to go from hot to cold, which apparently releases toxins as you do. For me, I mostly just wanted to soak in the warm tubs to get away from the cold and soothe my achey muscles, which it definitely did! We were supposed to sit in the hot tub, or sauna for 15-20 minutes then jump into the cold tub, which was 17 degrees. We didn’t last for that long in the hot tub, and didn’t bother with the sauna, because heat and MS are known to not get along, and it was too hot for both of us! But the hot tub was perfect, we did about five to ten minutes at a time. Even though it did made my legs go to jelly a bit, it was so soothing I didn’t care. I tried the cold tub once, and that was enough for me. My body didn’t like the extreme temperature changes. But I’m glad I tried it! Definitely an interesting experience. 

We also visited the fine arts museum while we were there, which was free to us because we’re both under 30! This was a nice surprise since we started the trip out over budget because of our last minute changes. It was really nice to walk around at our own pace looking at it all, and even though I did need to take plenty of breaks, I still enjoyed it! And they of course had a cafe right in the museum where you can do just that, and incase you wanted to do even more Montreal style eating. 



Some of the museum highlights!



So in the end I had a great trip, hiccups and all. It worked out and I’m really glad we got to do it, and thankful for having such a lovley, understanding man in my life who really doesn’t mind when I just need to sit for a while or take it slow. Montreal can be a hard one to get around sometimes, old buildings that aren’t very accessible, rickety stairs and lots of hills, but we made it work, and really enjoyed it. 

Now on to planning the next one!

M

The joy of neurologists.

Fair warning, this is going to be a real ranty post. It’s just been one of those days!

I had an appointment today with my neurologist, and I’m just more frustrated than I can even explain right now. I don’t remember the last time I’ve been there and not left in tears. Probably because there hasn’t really been one..

Today was another pretty awful experience. Not only did the doctor make me feel like he was chastising me for contacting the clinic to ask questions, or for bringing up my “many symptoms” when I see him, but when I brought up the idea of changing meds, he tried to just shut me down before even discussing it. We talked about this the last time I saw him and the same thing happened. Now 6 months later, and I’ve continues feeling really unwell, just so run down all of the time, so I was determined to bring it up again.

The conversation didn’t really start well, but thankfully I had my father there with me today for support, and I’m glad I did because he was able to push the matter a bit more when the doctor tried to just dismiss my concerns. We talked for a while and went back and forth and it basically ended with him saying that it’s my decision, though he warned me it could be a risk going off of it in the time I would need to start something else. In the end he sent me to speak with the clinic’s nurse about my options. Now this is where it gets even more confusing. When speaking with her, it came out that I should be stopping the meds I’m on right now anyways, at least for a while, because my lymphocyte count is way too low. Now my last blood test was almost two months ago, and this is where she is getting the latest numbers, so my question is…why hasn’t anyone seen my results in that time? Shouldn’t someone have told me? And why is it that when I asked the doctor about changing drugs, did he not notice that he should be telling me that I needed to stop taking it. He even discouraged me from the idea of stopping for the amount of time I would need to in order to start another medication..but.. Now I have to stop anyways… WHAT! This has all left me with little faith that anyone in the medical world is looking out for me at this point. I kind of feel like I would be better off monitoring my results myself.

Now I’m sitting at the blood lab, waiting to have another blood test, which I now have to do every two weeks until my levels even out, and then I can decide which drug to take. It sort of feels like I’m on my own to figure out what the best way to go from here is…

Anyways, I really needed to get all that off of my chest. But now that I’ve calmed down a bit, I’m trying to shake it off, and am planning to just try to keep things moving, and possibly look into switching to another hospital to get away from the negativity I’ve encountered at this one.

And now I’m going to try and just focus on more exciting things, like my upcoming trip to Montreal!

Deep breath!

M

The singing MSer?

Now I wouldn’t say that having MS in itself feels very positive most of the time, but there are definitely some positives that have come out of my diagnosis. Before MS, I really allowed fear to hold me back in many areas of my life. I kept myself in a comfort zone, and was too scared to push myself outside of it. With all of the hard parts of having MS, the biggest positive has definitely been the feeling of wanting to push myself beyond that comfort zone, and try new things! One of the things I had always wanted to do, but allowed fear to hold me back from, is singing. Singing was always a sort of secret passion of mine. It was something I had always wanted to do, but was too scared to try. In high school friends of mine took a musical theatre class that put a play on each year, that I always wanted to take part in but was too scared to sign up for! I’ve always had a bit of stage fright, and avoided it because of that. But some time after I was diagnosed, and was feeling stuck and unproductive, I wanted to find something that would excite me again, something that would bring some happiness to my life. This was the time I started taking singing lessons. I wanted to try and get myself more comfortable with my voice, to learn how to control it, and maybe even one day sing in front of other people! I met a wonderful woman who would become my singing teacher and friend, and I’ve been taking lessons with her ever since. I even joined a singing group she started that meets every week, which was a big step for me as far as singing in front of other people goes!

Earlier this week, my singing teacher asked me to sing back up vocals for her with another student of hers at an upcoming show she’s having, performing her original songs (which are beautiful by the way! Check her out on iTunes- https://itun.es/ca/jAqV1 ). This is a huge step for me, and while I’m still terribly nervous, I’m also really excited, and feel proud of myself for even agreeing to do it! Lately I’ve been struggling a bit, this winter hasn’t been kind to me and I’ve been sick a lot, and just feeling really run down. Feeling this way can sometimes make it hard to see past the negatives of MS. It can be tough to stay positive. It’s hard not to get down sometimes, but stuff like this performance really helps to remind me of all of the things that having MS has brought to my life, and encourages me to try not to focus on just what it has taken away.

M

London road trip!

This weekend the boyfriend and I headed down to visit on of my very best friends who lives in London (Ontario, not the cool London :p). I went to college there, and hadn’t been back to visit in a few years. It was also the first time my boyfriend and best bud were able to meet, which I was really excited for! We’ve been talking about doing this for a while now, and it finally worked out!

So after a looong car ride, which I never enjoy, we met up with my pal, and her new boyfriend and had a sort of double date dinner and drinks. It was cute, and I’m so happy we all got to meet! It was also nice to be hanging out with people who are understanding of my limitations. Even my bestie’s boyfriend was making sure everyone wasn’t walking too fast so I could keep up, and things like that. She has filled him in on the details of my MS, and it was just comfortable for me. When I had to take a cab to get to the next location no one questioned it, and I didn’t have to feel embarrassed, and explain myself, which can happen sometimes around new people. Also my friend works early most days so was just as tired as I was, so we ended up not staying out too late. We went back to the hotel to relax and tried out the hot tub.. Which ended up being more of a lukewarm tub, that was full of drunk thirty-something’s, one of whom ended up leaving and throwing up red wine on the floor of the pool area. Always something interesting to see in London!

On the way home the next day, the boyfriend and I made a stop in a little nearby town called Woodstock, and visited the slot casino there for a bit (I won a whole 5 dollars!!) and this really cute antique/one of a kind market that had tons of interesting stuff to look through. I even bought a cool wooden owl picture to hang at home, and a salt and pepper set to add to my growing collection. I could have bought more of these, so many to choose from!

2015/01/img_0395.jpgJust one of the stall’s selection of salt and pepper shakers!

The car ride home was a bit difficult for me, I hadn’t slept well at the hotel the night before, and my strange light headed/dazed symptoms seem to get worse when I’m in a car for some reason. Not sure if it’s the motion, or small space, but I feel like I don’t breathe well or something, and I felt like I might pass out for a lot of it. It’s very strange. It was all worth it though, I had a nice time and am really happy that I finally got to introduce two of my favourite people to each other!

So after a great weekend, I’m back home catching up on chores, and then I have choir/singing group practice tonight, but for now I’m off to attempt a trip to the grocery store. It may not sound like much but it takes a lot out of me to walk there, shop and walk back. But today I’m going to try, all in an attempt at keeping busy and doing more in spite of my MS :D

M