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What people with MS would love to hear

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It’s heartbreaking to hear from a friend or loved one that they have been diagnosed with multiple sclerosis. If upon learning the news you go through a range of emotions—from shock to sadness to anger to fear—well, then just imagine what your friend must be feeling themselves.

It’s only natural when a loved one is going through a health struggle like MS, we want to support them in any way possible. We want to be a physical presence in their life to assist them, but still need to respect their personal boundaries as they navigate a major change in their life. Sometimes, the best thing we can do is send a thoughtful note with some comforting words to let them know that we care.

But even then, it can often be difficult to find the right words. I’ve put together a list of items that someone living with MS would love to hear from a friend or loved one…

  1. “I’m here for you”

    Show up for your loved one and remain by their side as they go through the crazy MS process. And if you say these words, make sure you mean them, and support them through thick and thin.

  2. “Thinking of you”

    I’m thinking and praying for you… and I really mean it!

    Hearing that your wellbeing is on someone’s mind can be a great comfort, and the act of praying may be very peaceful for you as well. If you or your loved one aren’t religious, it’s still helpful to hear someone is sending you good vibes daily.

  3. “Let’s have some fun”

    Tell a Joke… after all, it’s been said that laughter is the best medicine. Ask your friend for suggestions on renting a movie or watching a tv series that might be uplifting and humorous.

  4. “I care about you”

    I don’t know what to say, but I care about you and I’m here for you if you need to talk or just cry.

    Listening is sometimes the best thing you can do for someone with MS. Silence is actually ok. Sometimes those empty spaces allow both of you to collect your thoughts and emotions. Be sure to listen without judgment.

  5. “You are so beautiful”

    I’ve set up an appointment with the hairdresser to give you a new haircut and manicure.

    Feeling confident when dealing with physical challenges can be difficult at first. No matter what physical symptoms your loved one is experiencing, this is an opportunity for you to make sure their inner and outer beauty is recognized by letting them know that they are beautiful… even when in PJs and having messy hair.

  6. “What day works for a visit?”

    Call and ask when a good time to visit might be. Be mindful when you are visiting that people with MS can tire easily and several short visits might be best.

  7. “Let me help you with…”

    Ask if they need help with any particular tasks such as:
    Grocery shopping
    Cleaning the house
    Making a meal
    Laundry
    Picking up prescriptions

    Finding the time and energy to run errands can be a challenge. They may feel ashamed in asking for help with tasks even though it is needed. Show that you are sincere in your offer to help by making suggestions.

  8. “I love you”

    Send a note with a personal gift such as books, movies, word games, small mementos, or special personal care products. When nothing else feels right, these three simple, powerful words can mean the world. They might be just the thing your loved one needs to push through the day.

  9. “There are so many things to love about you”

    MS has a way of feeling all-encompassing. Those affected may feel like their identity revolves around being a patient. That is simply not true. Your loved one is so much more than someone who has MS. They could be a dog-lover, artist, parent… Help them focus on all their amazing traits that have nothing to do with their illness.

  10. “How are you doing?”

    You can be there for your loved one by asking them how they’re doing not just physically, but emotionally as well. Don’t be afraid to ask about their mental health. Sometimes physical symptoms are only one part of the puzzle when it comes to MS.

Memory, forgetfulness and multiple sclerosis

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I woke up this morning to my pillow on the floor in the middle of the room. I’m not sure how that happened. I would have loved to have seen that pillow fight. It must have been a doozy…”take that – WHACK – and that – POW.”

I think I am closer to discovering why I’m always tired. It must be all the parties I’m having in the middle of the night with all the toys, dolls and stuffed animals in the house. We must have pillow fights too. I think they are the ones zapping my memory. This way I won’t be able to remember anything when I wake up.

Last night, though, they must have forgotten to clean up some of the evidence by leaving a pillow on the floor. I wonder if they are the ones that drink my coffee too. I will make a nice, hot, perfect cup of coffee and the next thing I know…the cup is empty and I’m sure I didn’t drink it. I’m absolutely positive of it.

I’ve had a few other things disappear too: my favorite sweater, my car keys, my cell phone, towels, and the TV remote. The other day I even lost the eggs a friend brought me. He had a dozen eggs for me since his hens are laying now. When he left, I couldn’t find them. What? How did I do that? I had a few minutes of egg hunting but I found them on my entryway table. I don’t remember putting them there.

Just the other day I was taking a shower, washed my hair but when I got out of the shower I had a head full of bubbles. How did I wash my hair and forget to rinse myself off? That happens a lot for me. Either I wet my hair and forget to wash it or have the suds still in and forget to rinse before I shut the water off. I do all my memory tricks to try and remember but I seem to fail at it most of the time. Sometime I even forget to brush my teeth while I’m in the shower even though the toothbrush is right in font of me. Ugh!

I was writing down a list of things I needed at the store yesterday. I had the list half written, got distracted and went into the bedroom to get my shoes but when I returned my pen was gone. Poof. It just disappeared. I had to get another pen just to finish my list. I still have no idea where that pen went but if I ever go shopping without a list in hand, things don’t go very well for me. I NEVER remember what I’m there to get and always return home having forgotten why I actually went there in the first place.

I think a lot of my memory problems are due to my lack of sleep. I wake up exhausted and go to bed exhausted. I know I’m getting closer to solving my memory problems and forgetfulness. I will let you know when I find out what is going on. I would love to have a few hours of real rest to get my brain a bit more organized.

Now, where did my coffee go? It was right here beside me. Seriously, it was. I’m not making this up. It must have gotten sucked into a black hole. I think I may be stuck in some weird space-time continuum. Maybe I’ll be the one to disappear next? Ahhhhhhhhhhh