MS Awareness Month & Spring Baking

I saw in one of my Facebook support groups for Canadians with MS, that someone asked, “Curious how do you communicate effectively about your pain so others such as family, friends and professionals can understand?” There were 115 replies, and every single one of them was the same message, different wording, but the same answer, “I gave up a long time ago as family and friends don’t get it.” “I found it was easier to limit my engagement to days I could fake being normal.” “They’ll never understand.” “I gave up…”. This made me incredibly sad, but I completely understand it. My Mom never talked about her MS. Maybe she did at the beginning but realized it was futile. You can talk until you’re blue in the face, but you’ll never be able to describe something that nobody else has ever felt before. Like describe the colour blue to a blind person.

MS is a very lonely disease.

People’s lives change. More specifically women’s lives change. When you become a mother, you spend 9 months nurturing a baby inside of you, a time when you quickly realize that you no longer have control over your life, but the tiny human being inside you does instead lol. When I was pregnant with HBear, I quite literally remember telling my MIL that the baby would fit into our schedules not the other way around. She laughed and laughed. We figured it out. Life changes again when the children move out. Their hobbies have become your hobbies and you are left with empty hands and empty hours, but you figure it out, you had 18 (or probably more lol) years to come to terms with the realization that one day, they will move on. And then, of course, after you go back into the work force, after children, and you just begin to figure it out again, and then you retire. Big big BIG change!

I had my first child at 29 and while my life drastically changed, I had more than enough time to ease into it. I haven’t experienced retirement, but I’ve seen a lot of people living happily in their retirement years. They chose the best time to retire, and they had years of planning that retirement with loads of time and thought going into making their retirement bucket lists.

But what if you don’t have a choice? What if one day you’re a healthy 42-year-old woman and the next day you’re battling fatigue, and a host of other MS symptoms? What if a disease stops you and you never fully get to be the person you were meant to be? This is something I think about often. I am simply not the same person I was 4 years ago before I was diagnosed. I posted a reel of my biannual DMT infusion last week and a friend posted a comment that I have read over and over again. It perfectly encapsulates what I am grieving and what I am celebrating.

“Thanks for answering questions that I always wanted to know. You are a tough cookie with the most incredible and supportive family by your side. Your life style prior to your diagnosis was unbelievable. It amazed me how you got so much done and all in different directions. You were and are Super Mom for your girls – glad that your treatments are helping you and you are still able to be involved in their lives – something that wasn’t possible in past years for some. Hang in there Super Mom you got this!”

I grieve the person I was. But I celebrate the advances that have been made in MS research. I often feel sad that my Mom isn’t here to see the progress in MS research and how much it would have helped her in her daily life. On the other hand, I am grateful that the medicines and research are progressing for myself, the people I have met that have this terrible disease and for future family and friends that might develop MS in future years. SHUDDER.

Throughout the month of May, I have been sharing facts, memes and reels on my InstaStories in honour of MS Awareness Month in Canada. To shed a light on what Multiple Sclerosis is about and what we deal with in varying degrees, every single day of our lives (I still PVR that soap 🤦🏻‍♀️).

May 30 is International MS Awareness Day and once again my incredibly supportive Sis has organized a team making up Kathy & Kristin’s Krew to walk in this year’s MS Walk. If you would like to support research towards a cure for this progressive disease check out their team page. Thank you for your continued support as I navigate MS with Ninja, HBear and SBean, it means SO much to us all.

For MS Awareness Month I read, or rather listened to Christina Applegate’s memoir, You With the Sad Eyes. The first 8 chapters GUTTED me. I wish my Mom could have read this book. 

You With the Sad Eyes by Christina Applegate A book whose audiobook is narrated by its author. Whoa. I could fill a lake with how many tears I shed while listening to this book. I chose to do an audiobook for this memoir. I love Christina Applegate and I needed her voice to tell her story. I’m so glad I did that. I could hear so much in her voice that the words didn’t fully convey. I have MS. I was diagnosed right around the same time as Christina. I have a love-hate relationship with her journey with MS. I listened to her podcast and I found her very negative so I was hesitant to read this book. Within the first five minutes, I was bawling. She was describing what I physically feel, perfectly. Mentally though, I could not relate. She is so angry. Of course everybody’s story is their own personal story, but I chose to listen to the audiobook for her voice because I love her, and the edge to her voice made all the words cutting instead of healing. Although I cannot compare our lives minute by minute, being close to the same age, interested in the same things, and growing up too fast, were all aspects of childhood in the 70s and 80s. It was interesting when she talked about her breast cancer, diagnosis, and how she was fake positive and how she wanted to be very real with her MS diagnosis. While I find her quite negative, she is very very real. I think I understand her a lot better now, she’s had trauma and a hard life and she’s just telling it the way it is for her and she’s right, MS sucks. Her description of how you feel when you’re diagnosed, how you reply when people ask how you’re doing I also say, “living the life“ lol. I also remember the weight gain at the beginning and how it made me feel. This was a book I will be talking about with my therapist for sure lol.