Guest post by Kate Thompson, MS Bike ambassador
That first year I was diagnosed with MS was hard — hard in so many ways. I had never struggled like I struggled then. Life was chaotic. I had a very supportive husband, whom I almost never saw. Our “quality time” was spent waiting in emergency rooms or for MRI appointments. I had three wonderful children — who were children — with temper tantrums, constant needs, and a poor understanding of what was happening to their mother. I had a career, which I had worked so long and hard to get. I could no longer do many of the things I used to do, like staying up until midnight to finish up work or to make cupcakes for school parties, and then get up at 6 a.m. the next morning to make lunches. Well I could, but my next day would be a mess.
Also, after my first relapse, my vision never fully returned, and I later learned it never would. What vision remained, worsened if I was tired. And then there was the dizziness. If I was tired, I was dizzy. If I moved too fast, was hot, upset or stressed, I was dizzy. I remember being at a work meeting one evening, talking to two experienced physicians and leaders in their fields, and walking through the conference hallways as we were talking. I couldn’t tell you what we were talking about — I was concentrating so hard on keeping my balance because my surroundings were spinning around me.
By the end of the summer, I decided things needed to change. I felt like I was failing at all of life’s tasks. I was tired and dizzy, and it wasn’t uncommon for the kids to hear that, “mommy needed to rest.” I felt guilty that I was only working part-time, but certainly couldn’t handle any more. Things weren’t working and I wasn’t sure at first what I should do, but realized that I needed to re-evaluate what was important in my life. After much discussion with my husband and a few close friends and colleagues, I decided to make a change.
These changes weren’t easy, but they were necessary at least to try and obtain some sort of balance to my life. I shouldn’t say they weren’t easy, I should say they aren’t easy, because if I am not careful, I can quickly slip back into my old ways and things could get flipped around again. It’s ironic that I was asked to share my thoughts about how I’ve managed to live well with MS because this week, my life has become unbalanced again. I have said “yes” to too many things, worked more than I usually do, stayed up too late on too many consecutive nights and spent too little time on taking care of myself, and I have paid for it.
This is a lesson though, one I will use to remind myself of the things that are important to re-establish the equilibrium in my day-to-day life (or at least attempt to do so, as I do have three kids!). My thoughts on living well with MS? The first, is also the most difficult for me and often it is the first thing to go, if I’m not careful. I’m a better mother, wife, friend, and physician if I take care of myself first. I have more patience, my head is clearer, and I have more energy if I take care of myself first. This involves having the time to eat healthy meals, having some amount of regular exercise, sleeping at least eight hours a night and being mindful. While I always knew that these things were important in life, I didn’t realize how important they were until after my diagnosis. They are the building blocks of my health. If they fail, my health begins to fail as well. They’re my medicine, which is something I often feel people who don’t know me may not understand. When I say I can’t come out for drinks, it isn’t because I don’t want to, because believe me, I do.
The next step in prioritizing my life is learning to say “no”. I used to think I could have it all and do it all— work full-time, be a mother, wife, friend, and go to the gym regularly. I now realize that I can’t do it all. I can still do many things in my life, but I do have a breaking point. So, while I would like to be a part of every committee, work every shift, and attend every school event, I cannot, and I am getting better at accepting that. About one year after my diagnosis, I decided I could no longer work the amount that I was working. Thanks to some very understanding colleagues, I decreased my work hours quite substantially. It was and is still important for me to work. I love my job and it’s part of who I am. But by working part-time and learning to say no to other requests, I have more time to focus on my health, and more time to focus on my biggest priority — my family.
Finally, the last thing I remind myself of frequently, is that life (like MS) is full of ups and downs. Just when I feel like things are moving along well, something happens to turn things upside down. These bumps in the road used to get to me. I would spend so much time focused on their negative consequences. Now, I try to realize that these bumps are a part of life and that the faster I can accept them, the faster I can get back to doing what is important to me.
Great insight here in this post. Thank so much for sharing!
Thanks for posting! I have Primary Progressive MS, which started when my youngest (of five) was about a year old. It took 17 years to finally get a diagnosis!!! I’m now a grandma to six, with one on the way. I’ve learned to say no more often than yes… quite the process, but I’m getting there! Hang in there. The people who love you are lucky indeed to have you in their lives.