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

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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! 

Success! 

The first ever MS Can’t Stop Me young adults conference took place this weekend, and I was so happy to be a part of it! Being the first event like this, it was a bit smaller, almost like a trial run of it with about 30 or so young people in attendance, but it was really great! I met some really awesome people, with or affected by MS. There was an amazing feeling of comraderie and inclusion the whole time, and I was so thankful to be there in the midst of it. 

During the conference we had some great speakers, and I was lucky enough to be a part of a panel discussion. It was my first time really speaking like that on MS related issues, and it felt really good to be a part of it. It was such a great weekend, tiring, but worth it!  

I’m really hoping that this will become an annual thing, maybe even on a national level! It’s so important to make young people with MS feel like they have a community, I could just see it on the faces of the people there, and so many mentioned to me how much it meant to them. 

Fingers crossed!

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

World MS day

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Today is World MS Day. This year, we are asked to share what makes us “stronger than MS”. For me, what makes me feel strong are the people that support me through it everyday. First and foremost, my family, who I would never have gotten through the past few years without. Supporting me through every hospital visit, every doctors appointment, and every bad day. My friends, the ones that stuck around and continued to remember that I am still the person I always was, even though I may do things a bit differently now. Also the new friends that I’ve met because of my MS, who I am so very thankful for. My boyfriend, who makes me feel like it’s okay when I’m not up to doing something we had planned on, and understands no matter what, reminding me that it’s not my fault. These people all make it so I feel like I can get through it even when I’m at my worst, and remind me that I have to fight, even when I feel like I can’t.

For them, I try every day to be #StrongerThanMS

M

Really, universe? 

I’m feeling a bit mad at the universe today. It’s starting to feel like it has it out for me!

I’ve just sort of been dealing with a lot of crap these days. The usual MS stuff,  this weird foggy/dazed feeling head that I’ve had forever, as well as a really messed up back which has left me in a bunch of pain most of the time. I’ve been trying my best to do as much as I can still, and today I felt like I would be somewhat productive and get myself to the pharmacy to pick up a prescription, get some lunch, things like that. I was thinking I was doing pretty well in spite of already feeling sore, just walking along on the side walk, taking in the (sometimes strange) sites of downtown Toronto, when a guy on his bike slammed into me out of no where. Well he was coming from somewhere, but I definitely didn’t notice until I heard him starting to yell, moments before he hit me. He smashed into me, ran over my foot and knocked me to the ground. I immediately started to cry as it was already painful, falling on my butt/tailbone that has already been bothering me for weeks now. So there I was, on the ground, and the first thing I thought about was how I wished I had my foldable cane out (it was in my bag) to hit him back with! A couple of girls who were near by came to my side and started asking if I needed an ambulance, which I did not, and a man helped me to my feet, which I was struggling to do on my own. It all happened really fast, and I was in shock. I went to sit on a near by stoop and the guy who hit me apologized and continued on, into the near by building after I said through tears that I was okay, and told him off for being on the sidewalk (which is not allowed in Toronto!). I didn’t know what else to do. The guy who helped me up said I should have called the police, and had him arrested, or try to sue him or something, but to be honest, he looked like life had not been kind to him, missing teeth, dirty clothes, heading into the financial aid office, and I just didn’t see a point. Nothing was broken, I was just shaken up and really sore, everywhere, from the whole ordeal, and wanted to go home. Once I got home, the extent of how much pain I was in started to set in, and now I think that I will be doing a lot more laying down on heating pads the next couple of days.

Now I know saying the universe has it out for me sounds a bit dramatic, I know that sometimes shit happens to everyone. It’s just in time like these I just want to yell at the world and say how it’s not fair to keep piling on! It would be nice to be cut a little slack.

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