Someone Like Me

In my last post I wrote a bit about my motivations to be involved in research studies as a participant, in this post I’d like to shine a little light on the researcher perspective. I’m going into my final year of a research and inquiry intensive undergraduate degree and have had the opportunity to both contribute to and carry out my own research projects.

Although I haven’t worked on MS research specifically, I’ve done most of my work on topics related to the social determinants of health and ableism. In a nutshell this means I like to examine how social and physical aspects of our society like education, income, water access, and technology, can impact the health and well being of people with different abilities. I say different abilities where others may use the term disabilities, to highlight how social constructs create and propagate categories such as able and disabled and the respective positive or negative connotations attached to these categories(I’m going to write a blog post later on ableism, stay tuned!).

As student researcher I’m also motivated by adding to that collective jigsaw puzzle I mentioned in my last post but in a slightly different way. (more…)

Choosing to be a part of someone’s research study is a big decision. When I was 15/16 and was first diagnosed with MS, I enthusiastically jumped on board for every study that I was asked to be a part of. I didn’t even really take a second to think about it at the time, I just signed up right away– usually in the same appointment. At the time I just wanted them to find out more about this strange disease; I knew that not as much was known about its manifestation in children and I hated that.

For me, signing up to give my health information away seemed only natural if it was going to help doctors and scientists learn more about MS, because then I would ultimately know more about it too. I’m still involved in a few of the studies I first signed up for 4 years ago and have had time to reflect on the whole thing. For me, being involved has had both ups and downs. A benefit I’ve found of being a part of research is that I’ve gotten to document and keep track of my health more frequently, I think, than if I had opted out. Another benefit is that I’ve been keen on following research progress and staying up to date with what’s going on in terms of advancements and progress. I’ve been able to develop a relationship with my specialists, and by that I mean I feel comfortable talking to them about any-and-all of my concerns.  The strongest pull for me to stay involved though has been the fact that all my participation means for me is a few extra appointments and tests each year. (more…)

One of the hardest things for me dealing with MS, both when I was first diagnosed between Gr. 10 – Gr. 11 and now in university is how it makes me feel and impacts me socially. When I first started experiencing symptoms and missing school I felt like I’d basically lost myself. I went very suddenly from being a typical high school kid to having to think and worry about all the uncertainty and “what ifs” of a lifelong illness. I’d always had a lot of different friends but the kind and quality of friends I had really became apparent in this period. I mean it’s natural for friends to come and go throughout time but some people I thought I’d know forever faded away into the distance, partially due to their inability to understand and support me in what I was going through. No hard feeling towards them though, it’s taken me a long time to be able to say that– but I found it hard and still find it hard to understand and support myself through this illness at times.  (more…)

Sometimes I don’t know if something that I’m feeling or is happening to my body is “normal” or is a symptom of MS.  Not the loss of function or outright things my doctor has told me are due to MS, but the little everyday things I might experience that don’t seem worthy of making a doctor’s appointment for. I feel like I’ve developed a tendency to blame things on MS even: I’m tired today– it must be MS. I have a headache– it must be MS, My arm feels weak, my vision is blurry, I feel like crap, it must be my MS acting up. This becomes a problem because sometimes the people who love and care about me will say something like “ oh yeah I’m tired too”, or “ my toes get tingly sometimes for no reason too”, and I reflexively get angry and snap something about how what I’m dealing with is because of MS and is likely 10x worse then what they’re feeling or will ever feel.

One of my goals this New Year is to do a better job of tip-toeing the line between defending my personal experience and accepting the subjectivity of experience. It’s true that my loved ones may never know what I feel but I’ll never know what the experiences on the extreme ends of their spectrum feel like either. (more…)

One of my proudest moments last year was completeing a 30 day hot yoga challenge. It was hard at first–I’m an ice cream kinda girl living in a coffee shop world but it was something I had wanted to do for myself for the longest time. Finally, I decided that there was no time like the present. Doing the challenge and devoting a part of my day to me really made me see how much of our day we spend doing things for reasons other then our own personal happiness, as well as the things we may do or don’t do based on how MS impacts our lives. Impacts like invasive daily medications, frequent clinic visits, or even the physical and emotional symptoms that we let hold us back in a way from really living and experiencing this life.

For me it was the fatigue. Like many other people with MS, I deal with immense tiredness and weakness. This “invisible” symptom has played a huge part in how much I have partaken in “me” activities since being diagnosed. Activities as routine as going to hang out with my friends, or as spontaneous as just trying something new– fatigue has been my excuse for holding back. Challenging myself really helped me gain a sense of control over how this symptom has held me back in the past. (more…)

I wish I had some wisdom or advice to share with everyone on fatigue… unfortunately all I can currently share is my current battle with it. One of the worst experiences for me, dealing with MS, is the overwhelming fatigue. You know, the complete exhaustion, heavy headed, “how am I going to get anything done”, completely unpredictable feeling? When it hits me all I can do is lay down in complete silence with my eyes closed, hoping it fades away. The hardest part is being young and feeling like I’m 60. I have so many things I want to accomplish in the day and it’s so frustrating to be weighed down by this invisible symptom. It’s even harder to help other people understand what I’m going through.

When I was first diagnosed I used to refer to my fatigue as a  “marshmallow headache”– like there was a giant marshmallow inside my head expanding within it, placing slight pressure on the inside, and numbing my ability to function. I try really hard to push past the fatigue and to not let this symptom hold me back, but that pushing ends up using more precious energy so I need to find a new way to do things and schedule my time.  My goal for the next little while is to try to sleep more than usual ( hopefully around 9 hours a night), as well as try to establish a regular going-to-bed and waking up schedule. These sound like easy fixes but when you’re a full time student, work, and volunteer, it’s easy to cut yourself short on time. Hopefully these things can help me minimize this symptom a bit… and if not they are good habits for overall good health to develop anyways. I read a really good story on dealing with invisible symptoms of chronic illness that I’d like to leave you guys with a quote from–I think it’s a good story to share with others to help them get a little glimpse into what you might feel with MS. I know I forwarded it to a few people myself.

“When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

An excerpt from the Spoon Theory by Christine Miserandino