I’ve been living with Multiple Sclerosis, or MS as most of us call it, for almost twenty years. When I first heard the diagnosis, I was scared. My mind skipped ahead to imagining a life of disability – far different from what I imagined for myself. But I pushed back and set my mind on living the best life possible – despite my disease.
Soon after my diagnosis, I chose to focus on overcoming my fears to do things I never thought possible, like climbing mountains. While mine hasn’t been a typical experience for most people with MS, what has been typical is the need to learn how to cope with the unpredictable symptoms of this disease, which can make even the simplest aspects of daily living frustrating experiences.
Those of us living with MS wake up every day and take mental stock of how we ‘think’ we’re feeling that day. I always start my days ambitiously – I have people to see and places to go! But MS will often throw my plans into a tailspin. Sometimes my symptoms get the best of me and drag me down — forcing me to change my plans or skip activities because I just don’t have the energy. When that happens, I try to reach out for help.
Needing help is a common theme for those of us living with MS. Last year, the MS MindSet Survey affirmed this when it found that the unpredictability of MS symptoms is a major and constant challenge in day-to-day life for people with MS and their support partners. The survey also found that people with MS wished most for help with everyday chores. I can definitely relate to this – an extra set of hands to keep things running smoothly is always welcome, especially when my symptoms are slowing me down.
It’s not always easy to ask for help, but when you have MS, you learn to become more comfortable reaching out for what you need. The good news is that we’re fortunate to be living in a time when there are so many places to go for help and support – from wonderful programs offered by MS advocates to government and commercial services.
With so many great resources out there, it can be difficult to know where to start. That’s where GatherMS* can help. GatherMS, a new website brought to the MS community by Genentech, brings together existing resources to help people with MS navigate the everyday unpredictability of the disease.
When I’m too tired to cook, I can go to GatherMS to find a service that will deliver dinner. If I have a doctor’s appointment and am struggling with pain in my lower legs, I can use the platform to find a ride service. GatherMS puts resources at my fingertips so I can easily get the help I need, right when I need it.
The site is designed for the MS community to add existing services they find helpful – I’ve already submitted some of my favorite services that I use every week.
Check out GatherMS.com today to see how it can help connect you, or someone you love living with MS, to existing services and support. I hope you find that asking for and receiving help is a good thing – giving you more independence and the ability to focus on the people and activities that are most important to you.
*Wendy Booker is a paid spokesperson for GatherMS.