Something I’ve always struggled with is putting words to exactly how I’m feeling. It’s hard to explain something that only I can feel, and try and get my point across to others. It’s frustrating, but I try my best! I have a feeling in my foot/leg right now, thats sort of numb, but not completely numb to the touch.. Sort of tingly.. sort of dull.. Almost like when your foot falls asleep. I think that’s the best I can do at explaining it. I don’t know if maybe it’s a mild relapse, but the longer it sticks around the more I’m starting to think it is. It’s not the worst thing in the world, and I think I would turn down steroids for it since they make me feel so horrible, but it sucks and I hope it goes away! I have a similar feeling in my right hand that I’ve gotten used to, so if it doesn’t go away I suppose I’ll adapt and learn to ignore that to and just learn to live with it. I think that’s about all we can do sometimes and I’ve accepted that.
Lately I just haven’t been feeling good. Something I again have a hard time putting into words. How do you feel? Well… not good! I’m always exhausted, light headed, can’t concentrate, and feel off balance… but there’s also this just general feeling of… crap! I wish a doctor would just accept that explanation and somehow knew what I meant. I don’t feel well and there’s no other way to explain it. Deal with it, doc!
I finally (begrudgingly) contacted the MS clinic that I go to to give them a heads up and am waiting to hear back. I hate contacting them. I feel like they already don’t like me or take me seriously, and if I ever do reach out it feels like I’m just annoying and over reacting. Someone reminded me recently that it’s best to contact them when things come up so they’ll have it on my file, so I gave in and called and am waiting to hear back if the doctor has any opinion on the matter.
In the mean time I’m working on figuring out the best way to describe these feelings. Someone needs to come up with a symptom thesaurus!
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!
Yesterday I felt the need to speak up in my neighbourhood’s Facebook group on a picture that someone posted of a car parked in a no parking zone with an accessible permit. It really upsets me to see this sort of public shaming, and I’ve seen it before on this group, so this time I felt I needed to get involved. I really tried to make people see reasons why someone may need to park there, but most of them
didn’t seem to want to hear the other side of it. A lot of people are quick to assume that those who use these permits are often “taking advantage” of having one. I just want to assure everyone that it’s not a fun perk to have to use one of these permits. I can’t say I’ve ever met someone excited to need it. Sometimes people need to park as close as possible to the location they are going, that is the point of the permits. That is why it’s legal to park in a no parking zone in Toronto with one. I understand there have been instances where people are using someone else’s permit, or no longer need theirs and choose to use it anyways, which I agree is wrong, but we cant just decide that that is the case all the time!
It really upsets me to feel like I need to constantly stand up for myself and other people using accessible parking permits for a very valid reason. I mentioned in my comment that this is a group of people who are constantly having to convince people of the validity of their disability. Especially if they aren’t using a wheelchair, or other mobility aid. It’s easy to look at someone and judge them, and think you know what’s going on in their life, but you don’t. I’ve had times where I felt that we’ve parked close enough and I’d able to go into the store quickly without my cane for example, but I know I’ll be getting dirty looks and judgment from people who have no right to judge me, so I bring my cane anyways.
I guess this post is just me venting, I want people to understand that there is a large spectrum of disabilities, some of which are invisible and all of which are valid.
Let’s not just assume someone is abusing the system that was put in place to help them.
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!
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!
this is the video mentioned in this post
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!
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.
I just got back from a week in Jamaica a few days ago! My boyfriend and I went to an all inclusive resort in Montego Bay, and it was great! For the first day or so I was kind of worried it was was a mistake to go, it was soo hot (and with my MS I’ve gotten really sensitive to the heat) and I was struggling a bit getting around the huge resort. But thankfully they moved us a bit closer to everything and I figured out what worked for me. It mostly consisted of getting up and having breakfast then heading right to the pool, and the shade! With the breeze the shade was a nice place to lounge for me, especially after being in the water, or sitting at the swim up bar ;)
We didn’t do any excursions on this trip, we really wanted a relaxing week so we just took it easy. It was so nice to have “what are we going to have for lunch?” be the biggest decision we had to make during the day! We also were there on my boyfriend’s 30th birthday, and what a way to celebrate! The hotel sent us some champagne and breakfast in the morning, and we spent the day in the water (with the bartender trying to make him do lots of shots!) and we went to their Japanese restaurant for dinner where they cook on the flattop in front of you, which was really fun.
We had such a nice time and didn’t want to come back to reality, or the cold Toronto weather! It’s a different kind of travel than what I usually want to do, more exploring and seeing sites, but this was just what we both needed. And it also made it easier for me to not have to worry about getting around! We also met some nice people, and even got a few of them on Facebook to keep in touch with. It was so nice, we’re already wanting to plan the next one!
Everyting irie mon!
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!
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!