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

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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

Parking frustrations. 

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.

M

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

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