World MS Day is celebrated on May 30th every year. (It’s different than MS Awareness week/month in March. I think that is maybe celebrated (is that the right word? Are we really celebrating? haha) in the U.S.
Anyway, wear orange. It’s the official color of Multiple Sclerosis.
Can I tell you a silly story? I went to D.C. with the National MS Society earlier in May to learn about advocating with lawmakers. I went to like 6 stores trying to find business casual clothes in Orange before my trip. I couldn’t find anything! So I packed the 3 orangeish shirts I already had and went to D.C. It was fine. I was orange enough. I am at Kohls the week after I get back to return something, and there is ORANGE COLORED clothes all over the dang store. I started angry crying in the store and I text my friend because I was so irrationally mad about it. In true friend fashion she laughed at me before saying something helpful.
My emotions sometimes swing all over the place as a side effect of my MS. I have PBA (Pseudobulbar Affect). It’s where you laugh or cry at inappropriate times. I cry at everything! It can get ridiculous. I used to take a pill for it but then I started feeling like I didn’t have any emotion, so just know, I might burst into tears and it’s not your fault. Then when you ask what’s the matter, I’ll probably start laugh-crying. It still won’t be your fault, and hopefully you’ll be laughing by then too.
Are you going to celebrate today?
Copied directly from the World MS Day website (link above): The theme for World MS Day 2020-2023 is ‘connections’. The MS Connections campaign is all about building community connection, self-connection and connections to quality care.
The campaign tagline is ‘I Connect, We Connect’ and the campaign hashtag is #MSConnections. MS Connections challenges social barriers that leave people affected by MS feeling lonely and socially isolated. It is an opportunity to advocate for better services, celebrate support networks and champion self-care.
MS Connections is a flexible, wide-ranging theme. Whether you’re individual or an organization, you can choose to focus on a variety of angles when celebrating World MS Day, including:
- Challenging social barriers and stigma that can leave people affected by MS feeling lonely and isolated
- Building communities that support and nurture people affected by MS
- Promoting self-care and healthy living with MS
- Lobbying decision makers for better services and effective treatment for people with MS
- Connecting people affected by MS to MS research.
I agree that Multiple Sclerosis can be very lonely at times (especially in the first few years where it felt like the world didn’t understand what I was going through.) July will be my 10th year diaversary of being diagnosed with MS. I think it’s important to find people that you can interact with to ask questions and share your stories. That can be your family and friends in real life. There are so many great people that you can follow on Instagram and Twitter. You can search the hashtags #WorldMSDay , #ThisIsMS , #MS Moms , #MSConnections etc to find accounts you may want to follow. Some profiles are very MS specific and data driven like info on new medications in the pipeline or new clinical trials you might be eligible for. Other profiles are more personal- my profile shares things that help me as a person living with MS. You can follow me at msfitmomma on IG, FB and twitter. Just like a pair of high heels, you might need to try a few before you find the right fit for what you are looking for. I miss high heels…
Don’t forget to eat a cupcake today to celebrate the fantastic MSfit you are!
They gave us a day….absolutely use that to your advantage today. Eat two cupcakes, why not?!
MSfit Momma 