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

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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

Merry Sickmas to me!

So Christmas has come and gone once again, and unfortunately this year I spent most of it pretty sick, hence my witty title ;)
The holidays have been a bit frustrating for me this year so far because of this.  Having to back out of plans at the last minute because of being a sickie, does not make me a happy camper. The main thing I was upset that I couldn’t do was Christmas dinner with my boyfriend’s family, which I was really looking forward to. Instead I spent the night on the couch, eating soup by the fire and feeling a bit bad for myself. Merry Christmas to my box of kleenex!

It’s hard not to get a bit mad at my body in these situations. I can’t help but blame my MS for my always catching colds and getting sick so easily. The meds I take are definitely not helping that, when they are meant to suppress your immune system, you’re not left with much to fight off any incoming germs. It’s upsetting because its just yet another time that MS has come to bite me in the butt… okay not literally, but let’s just say that my MS and I are not on speaking terms right now. My MS needs some time to think about what it’s done and apologize for it! Thankfully everyone has been understanding so far about the situation, because when I’m sick, it’s more than just the cold that is holding me back. All my MS symptoms act up a bit more than usual also. So I’m a little extra spasmy and foggy right now. Not to mention the lack of energy and leg issues.

I really just want to be better in time for New Year’s Eve, because I’ve been looking forward to spending it with my special someone for the first time, and I want to be able to get out and celebrate the start of a new year, leaving behind all of the craziness of 2014!

Keep your fingers crossed for me, bloggies!

M

Is this real life?!

Let just be honest, MS fatigue is a real bitch sometimes. I think It’s one of those things that most people don’t really understand about MS, or know it can be a part of it really. I’ve been dealing with this lately and I just think it’s something I want to talk about.

For the past week or so I’ve felt really out of it. I mean I always have a really foggy feeling in my head, but I’ve been beyond exhausted, which is something new for me. It feels like I haven’t slept in a week! It’s a bit hard to explain, because it’s different then just feeling tired, it’s like a full body as well as a mental fatigue. I’m a bit like a dizzy zombie bumbling around these days (again, great practice for my future “Walking Dead” fame and fortune!). It’s also TIFF right now, which is actually the main thing I’ve been leaving the house for, because I’m stubborn and don’t want to miss any screenings I have tickets for!

The fatigue kind of varies throughout the day in intensity for me, and some days are worse than others. Like today is particularly bad, I don’t know how I’m going to make it to the screening I have later, but I want to, so this is where that stubbornness kicks in! I’ve been really excited for this movie for a while now (what we do in the shadows, look it up!) so I’m gonna go anyways. I never know when the actor/directors are going to be at the screenings, but I’m hoping Jemaine Clement will be there today so I can convince him of our meant to be best-friendship. He’s obviously missing out. I’m a great time..when I can stay awake :D

After that, I think I will spend about a week sleeping.

M

Update: Met Jemaine. Great movie. Worth it.

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2 years, and counting.

So, as you may know, if you know me, or read this blog, around this time in 2012, I was officially diagnosed with Relapsing Remitting Multiple Sclerosis. I spoke about this most in my very first post. I’ve jokingly been calling this my MSaversary, (which personally I think should really catch on). The past 2 years have truly been a roller coaster ride – I think I actually understand what people mean when they say that now. There’s been  a lot of ups and downs, a lot of emotions, and worrying about the future. Sometimes so much so I’d forget to focus on the present. Time both flew by and stood still at times. Some of hardest times of my life so far took place in these 2 years. There’s been a lot of change, a lot to get used to. Reflecting back, there are of course some things I would’ve done differently, but I think it’s important to learn from that, and to move forward, and really to just be glad we got through it!

Being diagnosed, was a scary and confusing time. Since then, well.. there’s still been a lot of scary and confusing times really, but I think maybe certain things feel less scary as time goes on. Like having to go to the hospital sucks, but doesn’t scare me nearly as much as it used to. I’m a bit of a pro now actually! The thing that’s been toughest is that it’s so unpredictable. Just when I think I’m starting to get used to it, something new pops up to confuse things! It makes it hard, but I’ve definitely come a long way in learning how to deal with that part of it. I try to just take it as it comes and not get worked up about the unknown. That’s not always so easy, but there’s not much else you can do, you just have to get through it, and be thankful for what you do have.

It’s been a long process, but I think I have finally come to accept that I have MS. Now this doesn’t mean that I’m happy about it, or that I claim to have it all figured out, but I no longer have that feeling deep down that maybe it was all a big mistake, or that things might just somehow go back to how it was before. I get that now. It’s a part of my life wether I like it or not, and I think I’ve come to understand that. When I was first diagnosed, I didn’t want to talk about it. I didn’t want to leave the house, really. I was scared someone might ask me about it, or judge me and see me as a lesser person now that I was “sick”. I don’t really feel that way anymore. At least not usually. Pretty often I get asked how I injured myself, because I’ve been using a cane to get around since my last relapse, and that’s what people assume. I don’t shy away from saying that I have MS anymore, because although that person probably has no idea what that means, maybe now they’ll look into it a bit, or ask me more about it. If I can eventually get more people to understand what MS is, then I feel like I will have done something right! This has started to become a bit of a passion of mine, and I hope to work more in the MS world to advocate for myself and others, and spread the word. I mean, why not? I think starting this blog was a positive step for me in that way, because no matter how many read it, I feel like I’m giving an honest account on what it’s like for me to have MS, and I think that’s a good thing! Why not talk about it? People should know that there is struggle, and it’s hard, and it sucks sometimes and life would of course be easier without it, but we’re all just trying to deal with the cards we’ve been dealt. I think thats really all we can expect anyone to do.

From the time I’ve spent researching, thinking about, and speaking to other people with MS during the past couple of years, I’ve come to the conclusion that the key to succeeding in life with it is determination. You have to decide what you want to achieve, and fight for it, because its probably not going to be easy. Things aren’t as cut and dry as they once were for me, though maybe it didn’t seem that way at the time, it really was all so simple! A lot more goes into each and every decision I make now, even little things I probably used to take for granted. Sometimes in past two years I think I’ve shied away a bit from making decisions because of that. I don’t know what the future holds for me. I don’t really know everything that’s worth fighting to achieve just yet, to be honest. But What I’m determined to do right now is figure that out! And to find the things in life that make me happiest.  

So two years later, and maybe not too much wiser just yet, but trying damn hard to get there ;)

M

How rude.

Sometimes, my body can be a real jerk. I mean I myself am of course a lovely person, but that body of mine.. that’s another story! I’m sure it sounds strange to be referring to my body as something separate from myself, but to be honest, when it does things you can’t control, sometimes it can feel that way!

Right now, my body and I are just not getting along, because lately, it really doesn’t want me to have any fun. I try and make plans to go out and meet up with people, try for a little while to forget about all of the trouble it’s been causing me, and my rude body just has to remind me that it’s not that easy, and it aint gonna happen.

It seems that my body only wants me to stay at home and watch Netflix right now.

At least we have our new found love of The West Wing in common.

M

A&W Day in Canada!

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So tomorrow is a special day at all A&W locations across Canada. It is their 6th annual “Crusin’ to end MS” fundraising day! Every time someone purchases a teen burger, $1 will be donated to the MS Society! They also have donation buckets, and paper cut outs for purchase. It’s really great to see this kind of recognition of MS. In Canada over 100 thousand people are currently living with MS, yet the a lot of Canadians know very little about it! It really is a great feeling to have such a big company draw attention to it. Tomorrow I’m heading over to an A&W location with a big group of extended family for lunch, and I can’t wait to get my guilt-free burger eating on ;) 

If you can’t make it out to an A&W you can still take part! For every hashtag of #CruisinToEndMS on twitter, they will again donate $1. Oh also, if you RSVP to the event on facebook, hollaaa, that’s one more dolla! (yeah I just said that.)

Check it out! https://www.facebook.com/events/588314511290255/

M

Ignorance..maybe it’s not bliss.

Today I shared something on my facebook that upset me. George Takei (yeah..Sulu himself!) who usually is quite firm on his stance of equality for all, posted an insensitive meme about a woman in a wheelchair, who was standing to reach something from a shelf. This something happened to be a bottle of alcohol, which apparently was comical to Mr. Takei. The caption read “there has been a miracle in the alcohol aisle”. I am choosing not to share the meme here, because I personally don’t want to see it again.

I think this is a perfect example of the ignorance surrounding disability. It is assumed that if someone needs a wheelchair, they are paralyzed. This is not always the case. Some people, as most of you probably know, use a wheelchair for many different reasons, like they simply cannot walk far distances. Many people with MS fall into this category, which is partially why I took this so personally. Now this may not be considered “my fight” as I am not in a wheelchair (I have had to use them in my life just not that regularly) but I came across a great article discussing the situation, by someone who does use one on a daily basis, and has experienced an incredible amount of criticism for the use of the chair simply because she is able to move her legs. She is called a “faker” and ridiculed for it. This to me, is disgusting. I understand that many people are simply ignorant around the matter, and don’t know any better, but even so, what gives you the right to judge? I think the author can explain how it feels coming from a disabled person better than I, so have a look at the article here. Reading about how people have been chased down, and often reported to financial aid for lying about their disability, really breaks my heart.

I have (so far) openly seen this treatment in a small way, on one occasion in my life, when I was at the airport and assumed to not really need the wheelchair assistance, which I requested because I have an extra hard time after a long flight. I spoke about this in a previous post. I also get a lot of dirty looks for my use of a walker lately, which I’ve been using while in relapse. MS being an “invisible illness” makes these sort of situations difficult, as I know I don’t appear to need a walking aid, but right now I do. I feel for the poor woman in the photo being publicly humiliated for simply trying to get through her daily tasks without judgement. Whatever her situation is. Not to mention photographed against her knowledge. It makes me feel that this sort of treatment is almost inevitable in my life at some point, which is really quite sad.

What hurt me most, was the fact that the cruelness of the post was pointed out to him, and his reply, instead of taking it down and apologizing, was to say that everyone needed to “take it down a notch” and calm down about it. I was met with similar attitudes by a few people on my facebook today when sharing my disappointment with the original post, which has done nothing but further prove the lack of understanding out there. I didn’t share it to start an argument, I shared it because it hurt my feelings, and it seemed like no one even knew it had happened. I felt like I had to share it on behalf of the poor woman in the picture, and the countless other people who have to deal with this kind of prejudice on a daily basis. The idea of someone having to defend their disability just makes me angry, and I think there needs to more discussion, and education, on the matter.

No one deserves to be made to feel so small.

M

 

 

UPDATE: George Takei released an official apology on August 13th, 11 days after the post was originally put up. I do believe that he now understand how it was wrong, even if it did take him that long to get there. He stated he was away in England and did not see the mass of emails/comments about the post until he came home. Because you know.. there’s no internet in England… ;)

One thing I do agree with that he said for sure, is that this has opened up a conversation on the matter of “ableism” and hopefully even just a few people’s minds were changed in the uproar.