29 Things About My Life with MS
What’s it like for YOU to live with MS?
Memes are popular around the internet, so I thought that I’d like to adapt one for our MS community. I invite you to participate by sharing your own answers. If you’d like to share your own answers to these questions here, you can copy / paste my responses and replace the answers with your own responses.
Here are the questions and my answers:
- My current diagnosis is: relapsing-remitting multiple sclerosis.
- I was diagnosed in: 2005.
- My symptoms include: numbness, spasticity, visual disturbances, heat sensitivity, anxiety, fatigue, weakness.
- My comorbid conditions include: rheumatoid arthritis, hypothyroidism, and depression.
- I take: a number of medications for comorbidities, including a monoclonal antibody therapy prescribed for RA.
- My first MS attack was: blinding optic neuritis in 2000.
- My strangest MS symptom has been: the feeling that cotton fuzz is on my face, especially around my left eye, when I’m beginning to feel rundown.
- My biggest MS symptom/relapse triggers are: heat! The heat and humidity of summer totally wrecks my ability to function normally.
- I know an MS attack is coming on when: a myriad of symptoms seem to whisper, “hi, I’m back; remember me?” and won’t go away.
- The most frustrating thing about having MS is: not being able to do as much, physically and musically, as I used to.
- The most positive thing about having MS is: that I have met some wonderful people online and in person who also live with MS.
- During an MS attack, I worry most about: whether new symptoms will only fade somewhat or go away completely.
- When I tell someone I have MS, the response is often: “Oh, really, well you look good.”
- When someone tells me they have MS, I think: “I hope that he/she has a good doctor and access to reliable information.”
- When I read articles about MS, I think: that we seem to be going around in circles when it comes to new information or new discoveries related to MS; but everything is new to somebody so it is still valuable information.
- My best coping tools are: my cats, music, video games, and loved ones.
- I find comfort in: a warm, soft, fuzzy, purring feline.
- I get angry when people say: “Don’t worry; it will all be okay” when I’m upset about something.
- I like it when people say: “Let me know if you need anything; I’m here for you.”
- Something kind someone can do for me when symptoms are acting up is: help to remove obstacles, whether physical, environmental (eg, too much noise), mental, or emotional.
- The best thing(s) a doctor has ever said to me about MS is: MS is manageable, but it may not always be easy to live with; you must remain flexible and adaptable (I’m paraphrasing).
- The hardest thing to accept about having MS is: that I will most likely not be able to function as well as I do today.
- MS has taught me: to pay attention to how my own behavior and the environment affect my symptoms.
- The quotation, quote, mantra, scripture that get me through the tough times is: “Have patience. All things are difficult before they become easy.” – Saadi
- If I could go back to the early days of my diagnosis, I would tell myself: it’s okay to feel lost and sad; give yourself time to grieve and process what’s going on.
- The people who support me most are: my mother, my husband, and my friends, especially those online.
- The thing I most wish people understood about MS is: that the disease is variable and we are each unique, but that we all hope to live the best lives possible.
- MS Awareness is important to me because: I believe we each have a desire to be understood and to help facilitate the advancement of research to change what MS looks like in the future.
- One more thing I’d like to say about life with MS is: that each of us have to learn to be our own best advocates and to work with our doctors as healthcare partners.