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

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

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

 

 

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

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

TIFF time!

TIFF-Logo

So the Toronto International Film Festival is fast approaching and I’m getting excited! I love going to TIFF, it’s one of my favourite times of the year! Toronto comes alive and you can just feel the excitement in the air. Tons of people come for it, and the city goes a bit crazy. They bring films from all over the world, and this year there are almost 400 films being screened, from 70+ countries! Its a film nerd’s dream come true, right at my doorstep!

Usually I get a package of tickets to share with my brother, this year we have 5 each, and today I got to select which films we would see. They randomly select a window of time you are able to log in and choose, and this year I had pretty good luck as most of what I wanted to see was still available! This doesn’t always happen. I remember last year cursing at the screen as the words “off sale” blinked at me, over and over, mocking me! This year I was prepared. I’m talking about spreadsheets, and multiple options for each day, I was ready to go. Let just say I have a lot of free time right now, so I really committed. ;)

The only thing I’m a bit worried about is getting around. As I mentioned there are a ton of people, just everywhere you look. I also have a feeling I will be taking a lot of cabs. But it’s worth it! They do at least have what they call a “lobby pass”, which allows anyone with mobility issues to sit in a designated waiting area before each screening instead of waiting in line. I had this last year, and it was a really good thing that I did because TIFF is full of eager beavers who show up hours before the screenings to wait in line. Me + standing in line for hours? Don’t think so! It was really easy to get this pass last year, they didn’t really ask me for any details and just gave me one. I guess that was taken advantage of though, because this year I apparently have to prove my need for it. I’m assuming this is because some people were abusing it, and If that’s the case I totally understand them having to put some stricter rules on obtaining a pass… but it still feels pretty awkward to have to prove that I am “disabled enough” to need it. Especially in my case, where I don’t actually have any written proof of my issues. I guess I will be calling my doctor for a note?

Anyways, I wont let that all put a damper on it for me, I’m really looking forward to it, and I’m sure it will all work out. Got some really great films lined up to see, and I’m looking forward to all the uniquely TIFF things (like everyone yelling ARR when the anti pirating ad comes up!) that are in store. Gotta love festival time in Toronto!

M