Portugal!

We got back a few days ago from a wonderful trip to Portugal with my family, and it was so lovely there! We had a great time, and it’s just so beautiful. This was my boyfriends first trip to Europe, and it was definitely a great experience. I actually can’t call him my boyfriend anymore though, we got engaged on the trip! In a really beautiful town just outside of Lisbon called Cascais, at my favourite view in the town, and I couldn’t be happier! It really made the trip even more special.

The trip overall was really nice, we stayed in Cascais for a few nights, did a day trip in Lisbon, then drove out to the Algarve and stayed in a town called Moncarapacho, near Tavira, which was also lovely! Then we headed back to Lisbon for our last night and a bit of wandering around. The hotel’s were so dreamy, the people were so nice, and the food was amazing! The weather was surprisingly chill, as they are in a bit of a cold spell right now. It was around 17 degrees celsius most days, but to be honest, I was worried it would be too hot for me to deal with as I’m sensitive to heat like so many other MSers, so it was a bit of a relief! I wouldn’t have minded a few degrees warmer some days though, but I’ll take what I can get!

I really tried to make the most of every day, but felt pretty fatigued during the trip. I also had a harder time than I have before adjusting to the time change. Not sure if the overnight flight started me off on a bad foot that just stayed with me, or if it was just the time difference, or if it was simply MS fatigue! I don’t remember ever struggling with it so much on previous trips, but I was exhausted for the majority of it. I still tried my best to ignore it when I could and enjoy myself. My family was more than understanding when my FIANCE (heheh) and I decided to stay back from certain activities planned, and I encouraged him to go to things without me when I wasn’t up to it. That’s something we’re both still working on accepting, for me it’s that I need to accept that if he decides he’d rather stay back and spend time with me, it’s okay. For him it’s that I’m okay with him going even if I can’t, because I know he worries that I feel left out. We are figuring it out together though!

We did still get to do lots of great things. We had a walking tour in Lisbon and learned so much about it’s history. Our guide was great, and my dad arranged for me to have a mobility scooter to use during it so I could enjoy it with everyone else. It was great! And I felt proud of myself for continuing to accept these types of aides to help me do the most that I can. I’m a pretty good driver too, if I do say so myself! We also ate. A lot! Great food, tapas, and of course some wine!

One thing I wanted to share here was about the Lisbon airport. I had a bit of a hard time there finding the wheelchair assistance, and learned that in order to get them you either have to walk to the airline’s counter, which for Air Canada is not close at all to the entrance, or try and go to the kiosk with the wheelchair symbol and ask if they will take you. Technically the first option is what you’re supposed to do, but if I were to use that airport again I’d be sure to find them first. Ended up having to do more walking then I was up for, so I’d be sure to share that with others needing assistance!

Overall this was a great trip, and I’m so thankful that this is something I was able to experience with some of the people I love the most, and I really hope to be able to continue to travel for many years to come.

It’s something I’ll never forget!

M

And here’s a picture of us picking up our doggie after the trip, and telling him we’re engaged. I think he seems pretty pleased!

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Positivity

Living with chronic illness and disability can make staying positive difficult at times. Something I always tell newly diagnosed MSers when I speak with them in my volunteer role as “welcomer” on shift.ms, is to just let yourself feel however you do in that moment. Your feelings are valid, and people constantly telling you to “keep positive” and “look on the bright side” can start to feel dismissive and not respectful of your real emotions. It’s a scary thing to go through, and that feeling might get better with time, but it may just always be there in the back of your mind. What will happen? Where will I be in 5 years? Ten? Will I ever feel stable again? These are all valid questions, and it’s okay to not feel positive 100% of the time.

I do try my best to be a positive person in general though, and I’m thankful and happy for the good things I have in my life. I’m so lucky in so many ways, I have my family supporting me, and have found the love of my life who I get to share every day with. Things are good. But there are still days where I mourn the life I imagined I would one day have, and feel sad that I can’t do all of the things I wish I could. Sometimes I feel lonely, and angry, and that’s okay. It’s okay to feel down about things. It’s just not possible to always be the happy, inspirational person that other people expect you to be. Being diagnosed with a debilitating disease doesn’t mean you owe it to the world to inspire them with your perseverance. Sometimes just getting through the day is all you can do, and there’s nothing wrong with that. Celebrating the small successes are just as important as the big ones. This is key for me, to be proud of the things I do accomplish. Cooking dinner, doing the laundry, or getting out of the house for a bit on a bad day may be seemingly small things to the other people, but to someone with chronic illness, all things to be proud of! Reminding myself of that helps me to feel more positive every day.

Having MS, and other chronic illness, SUCKS. It’s okay to recognize that. I think what matters most is what you do with those emotions. Feel them, talk through them, take time to yourself and maybe even let yourself wallow a little bit now and then, but then pick yourself up and move through it. Sometimes you need to just ask yourself, what can I do to be kind to myself today? Maybe it’s taking some time to meditate, and breathe, or maybe it’s just spending some time doing something you love! Whatever you do, just remember that it’s okay to feel negatively sometimes, but try to remember that you are not alone in this, and tomorrow is a new day. Celebrate those small victories and be proud of yourself for getting through!

M

Isolation…

One of the hardest part about being chronically ill, is how isolating it can feel. It can be a really lonely thing, when you aren’t able to do as much as you once were, and feel like other people don’t want to understand. I was diagnosed with MS 5 years ago, and in those 5 years I’ve lost touch with some people I thought were my good friends, and am no longer able to work, so I spend a lot of time at home, alone. I’m very thankful to now share that home with my amazing boyfriend (who is also my best friend!), but he of course has to go to work during the week and I have from 1 pm to about 10:30 pm alone every day to try and fill. We have the dog, who sometimes also keeps me stuck at home or close by with his separation anxiety issues, but is still such nice company to have during the day. And I do still have friends that I stay in touch with and try to reach out to make plans with, but it’s just not always possible with chronic fatigue, pain and disability. Some people are really understanding about that, but they also have their own lives, and jobs, and aren’t really available a lot of the time, which I try to be understanding of, but unfortunately ends up leaving me feeling lonely a lot of the time.

It does feel sad to think about it, but we cope, and learn to live this new found life. I have found some great things to fill some of the time with, like volunteering at the local humane society and for the online forum for people with MS that I’ve mentioned here in this blog before, but unfortunately it’s not always enough and there are a lot of days where the most I can do is lay on the couch watching TV. I’ve had to take some time off from the shelter recently because of how I’ve been feeling, and it’s just hard when your body and your mind don’t seem to agree. I’d love to be out doing things and seeing friends, but my body doesn’t always let me. Staying positive can be hard sometimes, and falling into that loneliness is far too easy.

At the end of the day though, I remind myself that the people who really care will make the effort, even when I can’t. Tomorrow is always a new day, and whatever it brings, we have to adapt and live our lives as best we can, and learn to appreciate when we are able to do things that 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

 

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

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

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