I live with highly active Relapsing Remitting Multiple Sclerosis. Every six to eight months, my body attacks itself and some part of my central nervous system stops functioning. Since it is a progressive disease, each of these frequent attacks leaves me less abled in some way. I’m fortunate that I do not fight MS alone. I have a much needed team, each of whom brings some unique and valued support.
I am bright. I know some stuff. But I did not go to medical school. In fact, when I was first diagnosed, I had a very limited knowledge of MS. When it comes to attacks, symptoms and disease modifying therapies (DMTs), I rely on my Neurologist. As far as specialists go, he is quite accessible, knowledgeable and/or open to doing research when needed, and he is very caring. It has been very beneficial to have a patient focused MS doctor on my team.
Living with MS can feel very lonely and confusing. I’ve gained a lot of comfort and information from some of the commonalities shared by fellow MSers. This has come from friends and acquaintances with MS and from online community members such as those on Shift MS.
MS is rightfully referred to as a 'snowflake' disease because the central nervous system affected by MS is large, and depending on location of lesions and severity, it manifests itself differently in each person. That said, the comfort and knowledge I have gained from some of the shared aspects among the MS community has brought immeasurable support on this journey. Thank you fellow MSers for bravely and generously sharing.
Friends & Family
In most cases, my friends and family were in my life long before MS, and for mutually beneficial reasons, we’ll be side by side for many years to come. Friends and family who love me, want the best for me, and work hard to understand and factor in what I’m going through, are key members of my MS team. My mobility, sensory and fatigue symptoms have changed the way I interact with them, but they are clearly committed to continuing to learn what their role is in being part of my life with MS. I’m so thankful to have friends and family who have prioritized and nurtured these relationships, especially since MS has made me depend on them in so many unexpected and significant ways.
This may sound strange, but for me, the part of these relationships where people depend on me is just as helpful as the part where I depend on them. For me, being a parent to two kids keeps me committed to maintaining the aspects of my health within my control. My kids need me to be the healthiest version of me I can be. I can't change my MS symptoms, but their dependency is my continuous reminder to make the best health choices that I can. I also have aging parents and spend half a day a week with my father, taking him to run errands. It isn't easy for me with my responsibilities around work and kids, and with daily MS fatigue, but it is a welcome and healthy commitment and I know I will never regret prioritizing quality time with him.
My husband was there with me when I was first diagnosed with MS and is the MS team member I rely on most. He is very smart and has excellent research skills, so he immediately learned about MS and helped me to digest the initial heap of novel and intimidating information. He continued to bring those valuable skills to demystify each of the four DMTs I’ve been on.
He is very caring, and never makes me feel 'less than' for the limitations MS has placed on my/our life. He brings so much to our partnership and does a lot for our family, and thankfully is a great and dedicated cook. We have a loving and fulfilling relationship. Recently he had some of his own health issues to contend with. It was very hard at first especially since his health issues seemed preventable to me, or at least could have been caught sooner with the right self-care. I'm often reminding him to prioritize his health, especially because I have such limited control of mine. It is very challenging to have a key team member who has their own time and mind consuming health issues. While there were a few months when we were very focused on his health and healing, he is thankfully doing much better. It would have been very difficult to sustain that level of forgoing my primary team member's care for a long period of time.
I feel fortunate that I am well enough that I could be there for him. That's what being on each other’s team is about.
50, Canada, RRMS, dx 2018, Mavenclad