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

 

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

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

Sleeeeep..zZz

It’s been a but since I’ve written anything here. Things have been going okay since my last post though, not much to report, other than my frustrations around sleep! Which aren’t exactly new, just..different?  Maybe not the most exciting thing to write about, but it can be helpful to get it all out, so here I go!

I have a lot of fatigue during the day, and I’ve always had sleep issues as well. I started seeing a sleep specialist, who has put me on a strict “sleep regime” which includes only being in my bed for a total of 7 hours, wether I sleep enough or not. I also have to stop doing anything like watching TV or playing on my phone in bed, so I’ve been avoiding my bedroom entirely the last couple of days, which can be a bit hard to do in this tiny apartment of mine, but that’s okay.  I do try and get out as much as I can, but feeling this way is making that kinda difficult. The point of all of these new rules is to make me sleep more deeply when I do get to bed. So far it seems to just be making me more exhausted, but I haven’t been doing this for long, only a couple of days. I’m not sure if my body will adjust to it and let me sleep and function a bit better during the day, but I hope so!

He has me doing a few other things as well, like taking tryptophan at night, which is the same amino acid found in turkey that makes everyone sleepy at thanksgiving! Sounds delicious, but really it’s just a couple of horse pills that I have to get down half an hour before bed. I’m hoping that after a few days of this I’ll start to sleep better, and feel some improvement. Even feeling slightly rested when I wake up would be a huge relief! It’s such a crappy feeling to wake up every day feeling like you haven’t slept, and could just lay there forever. I’ve gotten good at ignoring a lot of my symptoms to try and get on with the day, but feeling so wiped out is a bit of a hard one to ignore. Lack of good sleep on top of MS fatigue makes Melissa a..tired girl.

So just thought I would share a bit of my sleep journey… is it a journey? Maybe more of a sleep walk… I’m not sure, I’m too tired ;)

M

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

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