29 Things About My Life with MS

What’s it like for YOU to live with MS?

One of the most important principles behind MS storytelling is sharing. Through that sharing, we work to increase awareness and understanding, which helps to decrease stigma.

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:

  1. My current diagnosis is: relapsing-remitting multiple sclerosis.
  2. I was diagnosed in: 2005.
  3. My symptoms include: numbness, spasticity, visual disturbances, heat sensitivity, anxiety, fatigue, weakness.
  4. My comorbid conditions include: rheumatoid arthritis, hypothyroidism, and depression.
  5. I take: a number of medications for comorbidities, including a monoclonal antibody therapy prescribed for RA.
  6. My first MS attack was: blinding optic neuritis in 2000.
  7. 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.
  8. My biggest MS symptom/relapse triggers are: heat! The heat and humidity of summer totally wrecks my ability to function normally.
  9. 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.
  10. The most frustrating thing about having MS is: not being able to do as much, physically and musically, as I used to.
  11. The most positive thing about having MS is: that I have met some wonderful people online and in person who also live with MS.
  12. During an MS attack, I worry most about: whether new symptoms will only fade somewhat or go away completely.
  13. When I tell someone I have MS, the response is often: “Oh, really, well you look good.”
  14. When someone tells me they have MS, I think: “I hope that he/she has a good doctor and access to reliable information.”
  15. 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.
  16. My best coping tools are: my cats, music, video games, and loved ones.
  17. I find comfort in: a warm, soft, fuzzy, purring feline.
  18. I get angry when people say: “Don’t worry; it will all be okay” when I’m upset about something.
  19. I like it when people say: “Let me know if you need anything; I’m here for you.”
  20. 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.
  21. 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).
  22. 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.
  23. MS has taught me: to pay attention to how my own behavior and the environment affect my symptoms.
  24. The quotation, quote, mantra, scripture that get me through the tough times is: “Have patience. All things are difficult before they become easy.” – Saadi
  25. 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.
  26. The people who support me most are: my mother, my husband, and my friends, especially those online.
  27. 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.
  28. 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.
  29. 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.

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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