The lessons I have learnt through my diagnosis seem to be never-ending, and I love it. I used to search for a “why me” answer, and never got one. FINALLY after 8 years I’m starting to see my answer and am re-thinking my questions – why not me?
Recently, one of my good friends lost her mother to a battle with a brain tumor. Naturally I was sad for my friend, but the other side of me kept thinking … that could have been me. All I wanted to do was cry the whole funeral, and half of my emotion was due to me feeling terrible that I think “MS is terrible” when it could be SOOOO much worse.
I’m alive, I’m healthy, all my symptoms go away periodically, and I have amazing people around me. I’ve really had the opportunity to know so many amazing people that have passed on, and each one of them has made me realize “MS just really isn’t that bad” … it sucks … but it’s not the worst …
Watching someone else go through a battle is such an eye opener to your own battle, and I think more of us need to step back and watch someone else’s battle …
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”.
When I first started writing for Someonelikeme.ca, I wrote a post about The Art of Healing that talked about my journey as an artist who unexpectedly lost all the feeling in my hands. I talked about how I adapted to this devastating loss and eventually “found” photography. Since that time, I have continued my exploration of the world through the lense and I’ve come a long way from where I started.
Taking on photography at the beginning of last year was a huge leap for me. Oh sure, I’d snapped quick photos of the family over the years like everyone else, but I wouldn’t even dare to say that any of those was artistic in the slightest. I never for one second considered myself competent with a camera. By the time I’d completed my first class, I was so inspired, I asked for a DSLR for my birthday.
Because I have been taking classes non-stop for the last 14 months, I have developed a large body of work over that time. I can’t say that I’ve ever accomplished this in any other medium I’ve every worked in. I think I owe it to not only to my phenomenal teacher, Vivienne McMaster, but also to ease and accessibility photography offers. No matter how cruddy I might be feeling on any given day, chances are I can still manage to pick up my camera and shoot something worth keeping.
Last week, another artist friend, Jenn, emailed me to let me know a call had gone out for artists who live with a disability. The show is called Dispelling the Myths: Disability & Art and celebrates Rick Hansen’s Man in Motion 25th Anniversary by featuring the artistic expression and achievement of artists with disabilities, through visual art, film and performances.
It’s never an easy thing to put yourself and your art out there, but with some encouragement from Jenn, I did it. Yesterday, I received an email from the curator and I am really pleased to share that my work was accepted! This will be my first gallery show in Canada as well as the first time I’ve shown my photography so I’m really excited. (And a bit nervous!) Making the decision about what images I wanted to submit for consideration was really hard, but I went with what felt right and I think it’s a good representation of the work I’ve been doing over the last 14 months.
Four and a half years ago, when I lost all the feeling in my hands, I thought my artistic life was over. The thing is, despite the fact that at the time my hands were useless, I still woke up in the morning thinking about making art and I’d go to bed at night thinking about making art. The core of who I am didn’t change and it refused to be denied. It took some time to adjust (which admittedly wasn’t easy) but I found a way to move forward. Choosing to do so led me to this moment in time where I am actually going to get to see my work hanging in a real gallery. I’m thrilled that I get to check this off my life’s to-do list in May.
I am telling you all this because no matter what you are going through, I want to encourage you to never give up on your dreams. It’s one of the things I feel most strongly about in dealing with this disease. Yes, MS is going to have an impact on your life and maybe put a crimp in the plans you had, but that only calls you to be more creative about how you go about accomplishing the things that matter to you and if it REALLY matters, you’ll find a way.
I was recently lacking inspiration for a blog article so naturally I turned to my friends for some help. I was interested to know what they wanted to know about MS and what questions they had. After some sorting, I have decided to answer two of my friends’ inquiries.
The first inquiry was: “what have you found that relieves some of your symptoms.” My symptoms are exacerbated by heat, fatigue and stress. So I try very hard to get as much sleep as I can, which can pose somewhat difficult as I also suffer from insomnia. I try to keep my life as stress free as possible, which we all know is a losing battle. However, I try not to sweat the small stuff. In regards to heat, I stay out of places that are too warm, can cause me to overheat, and definitely the sun in the summer. Unfortunately, I am unable to have more than a lukewarm bath or shower. Hot tubs are definitely not an option for me either. These are all small sacrifices to make in order to keep MS in check. I also cannot forget to mention that my treatment protocol, Tysabri, is a huge factor in keeping my symptoms in check. When all of these things work together I can appear as almost a normal 26 year old! Almost!
The second inquiry was: “what’s the best thing to do when you are really feeling low.” I like escapism. I will read an engaging book, write, or listen to some upbeat music on my iPod. I try to pull myself out of the low moods. I try to always remember that I am fortunate. I have many blessings in my life. There are some in this world who are not as fortunate or do not have the support systems they need in this life. MS is simply a part of me, it certainly doesn’t define me nor will a really low mood. I may have a larger cross to bear in this lifetime but I will conquer my dreams! It may just take a little longer than anticipated!
Ok maybe not 50, but in the last 2 years I feel like my body has aged drastically. Only now (April) do I finally feel I’m getting back to my “old self”. Let me be clear that my “old self” is not who I was 8 years ago, but who I was 2 years ago before I started having a monthly regular attack. My definition of “normal” has changed, and I’m not even sure I have a definition anymore?! Oh the joys!
However, one thing is certain; these last 8 years of my life have taught me more about myself than I ever thought possible. I have faced things with MS that I never thought I was capable of handling and have come out on top. I have realized who my true friends are and I have realized that you never can tell what’s on the surface of someone. Over the course of these 8 years I have changed big parts of my life; “diet/exercise/social/aspects/volunteer/friendships/work”. A wise woman (my mom) once told me “you’re not giving IN TO the disease, you’re finally learning how to take control of it”- she is my inspiration and she always has something wise to say to pick me up when I fall.
Now I know how it’s possible that these 8 years have flown by … my support has never turned their back on me, and have been there every step of the way ….
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