5 whole years.

Hi there, me again! Guess I’ve been a bit preoccupied with the little doggie we got, that I wrote about in my last post. He’s still difficult but is slowly getting better! We just love him so much.

But, I was reminded yesterday when talking to a newly diagnosed girl, that it was around this time 5 years ago that I was diagnosed with Relapsing Remitting Multiple Sclerosis. It’s been a long, hard journey with lots of ups and downs, but I am so thankful for all the good it has brought into my life as well. The people it’s brought, or brought closer to me, and the experiences I’ve had that I may not have otherwise.

I want to thank everyone who has supported me over these 5 years. I’m really lucky to have such an amazing support system. I’m thankful every day for my family, close friends and amazing boyfriend who all go above and beyond for me and help me get through, good and bad.

Some days are really hard, and having MS sucks, let’s be honest. It’s taken a lot from me, but it’s also taught me a lot. Like to try and face my fears. I used to be so afraid, but in some ways I’ve done more since my diagnosis than I ever would have before. Life is short, and you never know what the future will bring, and that’s even more true living with an unpredictable disease like MS. So, travel alone, put yourself out there, tell people how you feel about them and express your emotions, there’s no better time than right now. Make the most of it, but also don’t feel bad if you need to have a day (or 3) off from everything. Learning my limitations and how to budget energy is how I make it through!

It’s can be hard to stay positive all the time, and that’s okay, but we all have our struggles, and to anyone out there reading this that can relate, I just want to remind you to take it one day at a time, and that you can do this!

M

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Pets 

We’ve been talking about getting a dog for a long time now, and I’ve had my doubts and worries. Will I be able to help walk it? Or play and entertain it enough? Can I keep up with the energy of a dog? All things I really worried about. But. We decided to try anyways. We went to the Toronto Humane Society, because I volunteer there and really think they do a wonderful thing! They take such care of the animals and are of course a no kill shelter. 

I saw Sherman on their website, and I instantly loved him. I had to go and meet him. So we decided it was time, let’s just go and meet him and see how things go. We of course fell in love with him, he jumped right into our laps and we couldn’t say no. He’d met a lot of people already, but they all decided not to take him because he had recently come in from a shelter in California and has  been fixed, at 5 years old, and they found an enlarged testicle which turned out to be cancerous. They thoroughly tested him after and he was given the all clear, but there’s always that small chance. We just felt like we could give him a happy life, the poor thing. So we placed him on hold to be picked up the next day! Things got a little stressful from there, but he still is that sweet boy that we just know will be the best companion for us. 

He does have some issues though. Sherman (we kept the name they gave him because it’s so cute!) has some pretty bad anxiety. Which is causing me pretty bad anxiety. So far we haven’t left him alone for long, but he started just howling his head off when we did. This is one of my biggest concerns, living in a building full of people! But he’s also fearful of bigger dogs, we’ve now learned, and he growls and barks at them. This has made walking him very stressful for me. I’m so afraid that the other bigger dogs will hurt him. He’s only 10 pounds! The plan is for my boyfriend to take him for longer walks before and after work, and for me to do the short ones during the day, but I’m already worried about it, and have been in a constant state of panic for the last 24 hours feeling like, was this a big mistake? Are we the right people to help this kind of animal? I hope so. 

Today I tried my first solo walk, and didn’t go very far, and he started to growl at a pack of big dogs so I tried to just pull him in the other direction and give treats etc. As I was told to do. But I felt fumbly and scared and stressed, which I know he can feel from me too! So I’m left feeling a bit inadequate right now. Which is kind of what I was afraid of. That I wouldn’t be enough. It’s been way harder on me than I expected. I’m actually surprised at the reaction I’ve had. 

So, we’re going to get a trainer to help us, just in the meantime I’m a giant ball of stress and tears trying to get through it. I can definitely feel how that affects my body, and it’s not good. My legs are extra weak and I’m just exhausted. MS does not like stress. But I really, truly, want to get through this and be the kind of owner I know he deserves. Already he’s made us happy, he’s just so sweet, and it’s especially nice company when it’s just the two of us. Well three, because my crazy cat is locked in the bedroom for the time being so we can slowly introduce them, but that’s a whole other story. She did just manage to open the door by pulling under the crack at the bottom of the door though… Oh dear. 

I’ve heard so many wonderful stories from other chronically ill or disabled people about how the love of a dog has brought them so much joy, and I really hope we can get to that part soon because I don’t think my nerves can take much more. 

M

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! 

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