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

Mindfulness Meditation

So I’m getting close to the end of and 11 week course of mindfulness meditation for people with chronic pain done through the hospital down the road from me. It was actually a group consisting entirely of other people with MS, at various stages, and it’s been a pretty great experience for me. Its all about being more mindful of yourself, your surroundings, and accepting the things you can’t change, like chronic pain etc. It’s been an eye opener for me in a lot of ways. Personally, I found one of the best parts of it to be just being able to talk and meet other MSers and to be able to relate to other people in person about the issue’s we all face. It was almost a sort of support group as well as a class about meditation. Though we are all different, there is a lot of common ground, and its nice to be able to find that with a group of once strangers.

I think the meditation side of it has taught me to be more calm. I focus on my breathing when I find myself getting worked up these days, and while I didn’t meditate every single day like I was supposed to, I have been doing it way more than I thought I would. Sometimes I even think to myself how I should meditate before I know I have to do something that scares me, or stresses me out.  It helps me to sort of ground myself and calm that ongoing inner dialogue for a few minutes, which can be a nice change, almost peaceful.

It’s hard to say that this course is the reason for my changes, but since I started it a lot of new things have happened. I think maybe it has played a role in helping me get to the point I’m at right now, which is trying to focus on the positives, and to kind of just keep the hope alive really. I’ve been pushing my comfort zone more and more, and experiencing new things. I was in a not great place with all this for a long time. Even if I wouldn’t really admit it to myself, I didn’t see real happiness in my future. I think I really started to worry that wouldn’t happen.. But now I’m starting to. Now I have hope that there is more good to come, and am starting to actually believe that I deserve it. Maybe I’ll need to achieve things in a different way now, but anything is possible. I’m not saying that everything is great right now and that I don’t have bad day. Days where I feel a bit down, when my pain or MS symptoms feel unbearable and overwhelming. On those days I now try to remind myself of the good that has come with this whole MS thing. The person I’m becoming because of it. So it’s not all negative, and I truly believe I’m better for what I’ve gone through these past couple of years.

I may still have a ways to go, but I feel like, for the first time in a long time, that I’m actually making progress, and that’s a pretty great feeling.

M

Neurologist-neursmologist!

So I had an appointment today with my new neurologist. The last one I was seeing, well let’s just say we didn’t exactly see eye to eye. He was super dismissive and made it seem like everything was just in my head.. I mean it is literally in my head, the whole brain lesion business, but you know what I mean! So I recently changed to a newer doctor at the MS clinic I go to and I saw him for the second time today. First of all, I wasn’t even sure if it was him when he called my name because he’s grown out his hair to resemble a middle aged Justin Bieber, which was a surprise, but his flowing locks aside, it wasn’t the most productive feeling appointment.

I’ve started to wonder if every neurologist actually has a stick permanently placed up their butts. Now I’m not sure on this, but I think it’s quite possibly a secret requirement to become one. Maybe in medical school potential neurologists are required to place said stick up there to join the club, and to encourage them to look constantly annoyed. Or maybe it happens after a few years of doing the job. It’s hard to say. But I’m sorry to say it, but I don’t know if I’ve ever met one that didn’t seem to fit this description!

Today wasn’t that much different than any other time I’ve met with a neuro, except maybe this one’s stick is slightly shorter than the last one’s, but he still definitely has one. It’s just disappointing to wait for so long to see someone and then leave with unanswered questions. I know he’s better than the alternative, which is a grumpy older man who clearly doesn’t enjoy his work – or people in general… But one thing they all seem to have in common, is giving that look of I’m not really taking you seriously. Brushing past any concerns without really addressing the problem. Sometimes really all someone is looking for is a “yeah, that can happen”!

It’s a strange experience to have a chronic illness and need to be followed by a specialist. At least it has been for me so far. For me it’s been just a guy I wait for months to see, for ten minutes tops. They’re basically in charge of the big stuff, but have barely gotten to know me! The last guy didn’t even learn my name and would just call me slugger, or kiddo. That’s probably the first time I’ve been a slugger!

Anyways, I get it’s not an easy job, and some of them do a lot to help, but at the same time it’s not easy being a patient either, and sometimes I think they forget that. I mean, would it kill ya to smile! ;)

In other news, I started a “mindfulness meditation” class today at the same hospital with a group of other MSers, which I think is going to be interesting! So I’m looking forward to that.
That’s all for now, off to research the stick-up-butt requirements. Which now that I think about it, could actually be a dangerous thing to google…

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

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.

 

 

 

Grief

When someone is given a life changing diagnosis like MS, they go through different stages while trying to accept it, and sometimes circle back to ones they thought they’d moved on from. One thing I’m not sure if many realize we deal with, is grief. Grieving the life you once knew, or thought you were going to have, because it’s different now. It doesn’t mean it’s going to be a bad life, but it will certainly be different. This may not be the most exciting topic to discuss, but I do really want to touch on all different aspect of having MS, and what that means to me on this little old blog of mine.

From time to time I still come back to that feeling of grief. I don’t know if it ever really goes away completely. It’s just difficult to feel like you have to give up on the things you once wanted, or even expected to have. Before I was diagnosed I was in film school and had just started getting out working on film sets a bit, and even though it was hard, I really loved it. I know now I probably won’t be up for those long hours on my feet ever again, hell I could barely do it back then, just didn’t know why! I think I’ve accepted that I have to find other passions, and something else to do with my life, but I don’t actually know what that is just yet. I do have some ideas, things that I’m excited to try, but once in a while I can’t help but feel that grief of the life I could have had without MS. I think that’s also one reasons I hold on to that travel dream of mine, which is something I’ve always wanted to do, and I feel like I can make it work, even if I need some kind of mobility aid. MS isn’t taking that one from me! We will make it work.

I do try to snap myself out of it whenever I start to focus on what could have been, because that doesn’t really help anything. Also, it could be a lot worse. I really am thankful for what I have, I’m lucky in a lot of ways and I recognize that. I really think MS has made me a stronger person. It has actually taught me a lot about myself, and others. I can see how a lot of the small stuff just isn’t actually important in the long run. It’s taught me to be more empathetic, and to appreciate those who are able to do the same. It’s also taught me how important it is to find the humour in things. If I can’t laugh at it then what’s the point! I’ve also met some great people I wouldn’t have otherwise, and I think I appreciate good friends and family more now. I think being sick shows you who people really are.

So overall, it’s not all negative, this MS stuff, and I think with time I will see that even more!

M