workworkwork

I saw a video recently, posted by a website about chronic illness, about not being able to work. The video really resonated with me, as someone who hasn’t been able to work since my MS diagnosis back in September 2012. I often feel guilty about this. Sometimes you just feel like you aren’t doing enough, even if you’re doing all that you can. The video I mentioned shared some thoughts from other people in a similar situation as me, and it really felt validating in a way. I know other people feel like I do about not being able to work, but just seeing some of the quotes specifically state it was kind of helpful for me. In the video it said things like,  “I would love to hold down a regular job. I would like to get to the end and feel like I accomplished something rather than live day to day”. This is something I really relate to. Having a job and something you can accomplish every day is taken for granted by a lot of people. Now I know not everyone likes their job, or wants to work, but when you don’t have the option to it’s a different story. I’ve had people tell me that they’re jealous of me staying home, which makes me laugh. I would truly love to be able to have a job and work every day and complain about it to my friends just like everyone else, but its just not feasible for me. MS causes me to have chronic fatigue, and pain, and trouble walking or standing for very long. I’m always light headed, and dizzy, and have trouble concentrating. But hey, if you want to trade places, I’m willing!

“No one realizes that a job does more for you than just pay your bills. it’s part of what gives you self esteem.”

It’s hard to feel like you aren’t doing enough of what people expect of you. Even small comments that I should try getting a part time job as a this or that can feel really hurtful. Trust me, if I could I would. I do some volunteer work which helps me feel like I’m trying, and one of the things I do is spend two hours a week at the humane society, which can be incredibly difficult for me, but it makes me happy and helps a bit with that feeling of fulfillment that other people may get working. Sometimes I just need to be thankful that I made it through whatever task I had that day. Maybe it was just an appointment, or making dinner. Maybe it was taking transit somewhere, or doing a couple hours of volunteering. Or maybe it was a really bad day but I made myself go to the coffee shop down the street just to get out for a bit. It’s hard to adjust your thinking to accept that this is enough, but life is hard. It changes. And sometimes you need to cut yourself a little slack and accept that you really were your best self that day even if it was just a small task, and this is something I’m trying my best to remind myself of every day!

M

this is the video mentioned in this post

 

New name, new look!

Welcome to my renamed blog, MSing around! This is still going to be about my life and navigating the world while living with Multiple Sclerosis, so this title seems more fitting then the previous “travelling MSer”. While I do still hope to travel more, and talk about it here, it’s just no longer the main focus, so felt like time for a change.

Looking forward to getting back to sharing, and writing about my experiences, and interacting with anyone out there reading!

M

Disability

I really haven’t posted in a looong time. I’ve said this before, and then give up again! I think I felt like I didn’t have anything important to say or was just complaining a lot. I also haven’t travelled in so long, but I’ve realized that this blog is just a good outlet for me, and how much I miss putting my feelings/experiences into words. So I’m working on renaming this blog, as it’s no longer really about travelling with chronic illness/disability, but just about me in general.

But theres that word. Disability. The D word. It’s a word that used to scare me. When I was first diagnosed with MS, I feared what it meant. I lived in fear of the possibility of becoming disabled. I would rather stay at home alone and depressed then show the world that I was different than how I used to be. I think it was mostly out of fear of  the judgment of others, which to be honest I still struggle with at times. I get a lot of weird looks, and the constant questioning of how I “hurt myself” gets tiring. I understand why people assume that, they don’t usually see someone in their (very late) 20’s using a mobility aid, a cane in my case, and they make assumptions about why I would need one. At time’s I think I should just come up with some kind of elaborate story on how I injured my leg mountain climbing, or doing some kind of trendy extreme sport, but then I remember that not everyone knows what Multiple Sclerosis is, and even if it’s small, I’m making a difference by sharing and explaining my MS to them. Maybe just once I’ll say it happened running away from an angry lion on my last African safari though….

I can remember when I first started using a cane, when I travelled to Italy with my family and my dad surprised me and brought a pretty one with a paisley design that I had been looking at online to help me on the trip (one I still use and love!) and I finally decided that it was true that I might need a bit of help. I think this was the start of me really accepting my diagnosis, and that oh so scary word, disability. I didn’t let anyone use that word to describe me, it felt so limiting. It felt like I was admitting defeat. I see it differently now, but it took time to get here. I’m a part of an online group for chronically ill/disabled people in my area and I hear people use the term so easily sometimes, to describe so many different things. Part of me is jealous of how just accepting the term ‘disability’ seems to come naturally to some people, but the other parts of me are really just happy to hear about it, and to be able to listen to other people’s struggles and have an open dialogue about my own! So many people are disabled in one way or another, it’s such a large spectrum, and I think I’m now actually okay with being on it. This is not something I asked for, or can control, this happened to me, like so many others. I think it’s more emotionally draining to ignore or deny that I am disabled, and just a few months shy of 5 years since my diagnosis, I think I’m finally okay with it. 

M

Yah mon! 

I just got back from a week in Jamaica a few days ago! My boyfriend and I went to an all inclusive resort in Montego Bay, and it was great! For the first day or so I was kind of worried it was was a mistake to go, it was soo hot (and with my MS I’ve gotten really sensitive to the heat) and I was struggling a bit getting around the huge resort. But thankfully they moved us a bit closer to everything and I figured out what worked for me. It mostly consisted of getting up and having breakfast then heading right to the pool, and the shade! With the breeze the shade was a nice place to lounge for me, especially after being in the water, or sitting at the swim up bar ;) 

We didn’t do any excursions on this trip, we really wanted a relaxing week so we just took it easy. It was so nice to have “what are we going to have for lunch?” be the biggest decision we had to make during the day! We also were there on my boyfriend’s 30th birthday, and what a way to celebrate! The hotel sent us some champagne and breakfast in the morning, and we spent the day in the water (with the bartender trying to make him do lots of shots!) and we went to their Japanese restaurant for dinner where they cook on the flattop in front of you, which was really fun.

We had such a nice time and didn’t want to come back to reality, or the cold Toronto weather! It’s a different kind of travel than what I usually want to do, more exploring and seeing sites, but this was just what we both needed. And it also made it easier for me to not have to worry about getting around! We also met some nice people, and even got a few of them on Facebook to keep in touch with. It was so nice,  we’re already wanting to plan the next one!

Everyting irie mon! 

Well hello!

It sure has been a while since I’ve posted anything here. I guess I sort of ran out of things to say, which anyone who knows me probably wouldn’t believe ;)

I’m not really sure at this point if anyone still reads this, but I thought I’d check in and hopefully get back into the swing of things. So, what’s new in my world? Well a lot actually! I’ve of course been dealing with the good old health issues as per usual, but other than the MS side of things, my life is going pretty darn well. I’m in the process of moving, which I’m sure nobody enjoys doing, but I’m excited because I’ve found a lovely place that I’ll be sharing with my lovely boyfriend! We’ve also planned a trip to Jamaica late November, so stay tuned for a travelling MSer post, Jamaica edition! 

I’m also still volunteering, with the online forum www.shift.ms, and with the MS Society here in Canada. I’m currently lending a hand here and there with an upcoming conference they’re hosting for young adults living with, or affected by MS. I’m even going to be speaking on a panel discussion at it, so that’s pretty exciting! It’s going to be held in southern Ontario, so if by any chance someone out there reads this and is interested, or might know someone who is, just visit http://mssociety.ca/youngadultforum

So life is going pretty well in spite of all of the tough stuff, and it feels pretty good to be able to say that! It was recently my 3 year MSaversary (as I like to call it) and looking back to when this all started, I don’t think I really thought I would have a lot of the things that have come since then. I don’t think I truly believed I would find happiness, and was just grieving the things I lost instead of having hope for what I might gain. I’m pretty thankful for all the good that has come since then, and how I continue to get through it. 

So that’s all from me for now, but I’ll be back!

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

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