There are quiet times of the year where it is typical to have some plans, but not too many plans - and then there is the winter holiday season. Whether it's because people celebrate a holiday in December or because they have time off work, there can be a lot of social invites this time of year. I am fortunate to have many friends and family, so loneliness (which can be challenging for many) is not an issue for me. But having multiple sclerosis and many social prospects can feel lonely in other ways.
I am a Human Resources Consultant with a lot of recruitment experience, so the concept of using selection criteria to make decisions is not new for me. It's crazy how much I need to factor in to deciding which plans to make - timing (start and end), what else is going on that day or week, location, attendants, noise level, whether I'm invited alone or with my husband, and more. And even with clever and thorough calculations, I am not able to account for the dark cloud of uncertainty regarding how I'll feel at the time of the plans.
I need to factor in things that I never had to consider pre-MS - energy level for picking an outfit, blow drying my hair and getting ready. Washing and blow drying my hair takes up a lot of my energy - so I need to be economical with my time when undertaking those tasks. For most social outings, I will take an herbal supplement to enhance focus, tolerance for sensory stimuli and sometimes energy. The one that I rely on for focus and at times the added bonus of energy also makes me nauseous and gives me a headache, so I take pain relief medication and ginger with it. One thing that has become simplified is footwear - not only can I not wear heels, but because of sensations in my legs and back, I can only wear low profile flat shoes. So, I mostly wear sneakers, which I like.
I've always been a very social person. I like connecting with people. I like hearing about what is going on with their lives. I like making them laugh. I like when they make me laugh. I have very active relapsing remitting MS, which means that I have been suffering from attacks every 6-8 months. Since most of my attacks last 2 months, I am often in the midst of active MS. So when I do go to social events, and I do connect with people, the topic of MS and how I'm doing can come up. While 'escaping' is nice, it is also important for me to provide some visibility for what is mostly in my case, an invisible disease. I spend some time speaking about the symptoms and medication, and often some of the emotional aspects. If I want people to understand the limitations MS has placed on my life, how it has compromised my health and challenges my spirit, I need to be somewhat open and vulnerable. I also make sure to change the topic and enjoy being where I am. Those moments of normalcy, even if somewhat feigned, can be key for maintaining who I was pre-MS, and who I am as a partner, friend, and family member. It's important for me to be an ambassador for this invisible illness and to connect with others socially.
Writing this is reminding me of how much goes into managing life with MS, particularly during busy holidays. I am hoping that this holiday season's selection and preparation result in meaningful and enjoyable connection - and wish that for all of you too.
Hey there 👋 We’re Shift.ms, the community for people with multiple sclerosis. Founded by MSers, for MSers, we exist to give you social and emotional support, and to inspire you to take charge of your health as soon as possible after diagnosis. It's independent and free. Click here to join our community.
Hi! I’m Sari. I was diagnosed with MS in 2018, and had my first attack in 2012. I live in Canada with my supportive husband and 2 great kids. I work part time as a Career Coach and Human Resources Consultant. I spend the rest of my time with family, friends, reading, and taking care of my health to best be able to manage life with daily MS symptoms.