Lately I’ve become more home bound than any other time in my multiple sclerosis journey

Lately I’ve become more home bound than any other time in my multiple sclerosis journey. Sometimes I welcome the solitude and enjoy my alone time, but more and more it seems to come accompanied with depression, feelings of worthlessness, and tears.

Last week I was invited to a dinner scheduled for last night. It was something I had been looking forward to getting out of the house to be a part of. I had even laid out the clothes I was going to wear, but at the last minute I had to cancel because MS just wasn’t cooperating. Between vertigo, blurred vision, tremors and weakness, I just wouldn’t have made a very good dinner guest.

I crawled into bed after letting the person know that I couldn’t come and broke down into tears. The sobbing, snorting kind of tears. I felt so alone, so useless. No one tells you when you get diagnosed with MS that life has the possibility of changing like that. But you know, I have a feeling that even if they had told me, I probably wouldn’t have believed them anyway. I always thought I was going to be the one to beat the odds.

So what do you do when life catches up with you? What do you do when MS limits you? What do you do when tears are easier to come by than smiles?

The emotional pain that accompanies these kinds of times are hardly ever understood by others, but it’s important to not let them weigh you down. Talk to those in your life who are part of your support system whether it be a family member, doctor, friend or therapist. You can’t keep everything bottled up. It really is okay to talk about what’s going on. You’re not being selfish, a burden or attention seeking when you do.

Today, I’m up early, my emotions are much calmer and I’m ready to face the challenges before me. Sure my hand is still a bit shaky and I had a hard time transferring from my bed to my chair, but it’s a new day filled with countless possibilities. I’m dressed, the weather is starting to cool down a bit which is always welcomed, and I already found something to smile about as I watch some wild turkeys in my back yard playing tag.

Don’t lose hope! Sometimes that is the only thing holding me together.

13 replies
  1. Meeya
    Meeya says:

    Yep, we all know what a horrible, unpredictable roller coaster ride our lives with MS can be… and we somehow have to figure out how to best deal with the ever changing ups and downs… 🎢
    Try to enjoy the highs, scream on the way down, and be assured: none of it will last forever…😋
    In the meantime, I send you all my virtual hugs and kisses! 😘

  2. indulge
    indulge says:

    I am so sorry you had to deal with this episode, but you did deal with it. Sometimes that is all you can do. Go to bed. cry, whatever and then tomorrow is a new day. Sending lots of positive thoughts.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope but please don’t lose hope, we are all here for you. I’m just sorry I can’t get there to help. I have a similar problem as I can’t even get outside without help. My driving has gone and I depend more on everyone. But I have a good wife who I can depend on most of the time, but that can be hard with a PTSD sufferer which, like MS doesn’t go away.

  4. Sue
    Sue says:

    I think if any by-product of MS is understated, it’s the exhaustion both physically and emotionally. I sometimes think family and friends think I am exaggerating or using it as an excuse.

  5. Rita
    Rita says:

    Exactly, my first doctor didn’t even mention fatigue. Why nobody tells was what MS really is: a debilitating disease, which makes you a limited person. My 73 year-old mother has tree times more energy than me, because aging is not a problem. You can age and still have energy. MS is a problem and destroys your energy.
    The only person who was honest with me was a social worker, who advised me to low my expectations for the future, she said: “People with MS plan do a lot things, but end up doing close to nothing, because of fatigue”.
    She told me the true. 🙁

  6. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    The longer I have MS I find that I have become my new best friend and event planner. I can nap if I want to. I can wear my nightgown all day. Eat what I want to. Do not have to explain why I did not make it to the bathroom in time. If I need to cry, the tissues are close. The remote for the TV is mine, unless I loose it in the bed blankets or a cat steps on it and changes the channel. I tend to protect myself more from outside things.
    One thing I do love and look forward to is checking in with Lady Conway and her followers.
    I wish you all good things now and always. Be well.

  7. Tiffany
    Tiffany says:

    I’m so sorry Penelope but like you said its a new day and we are fighters and WE CAN DO THIS 🙂 I usually like to read a good Saint book or just a short story about their lives and it makes me know I can do this no matter what is thrown in my path… I kinda make it a mini challenge to see if I can do something like they did… hehe and that usually perks me up 🙂 good luck Penelope, YOU’VE GOT THIS GIRL 🙂

  8. Jim Manner
    Jim Manner says:

    I have missed several events/milestones in my children’s lives because of MS. It gets to be truly depressing, and it makes me feel “worthless” or a like a failure at times. My MS is not as progressed as yours, Penelope, but I know that my primary progressive diagnosis will get me there eventually. Thank you for your strength and encouragement. You are a blessing to so many people.

  9. leah
    leah says:

    I totally get you. Yesterday, I attended a dear friend’s funeral…had feelings of anxiety but still made the effort to attend. I was supposed to go on a trip with my husband but had to cancel last minute…I had severe waves of panic. As you mentioned in your blog, I will be seeing a psychologist in a couple of weeks for my anxiety issues and overwhelmness. I spend most of my time house bound…and quite frankly I enjoy the solitude and comforts of my home. Most of our city streets are a mess now with all the road construction and detours that it’s a relief to stay put. I find it helps to keep the television set on which creates an ambiance of company in my home and music too has a lovely way of cheering me up.
    Today’s a new day😊

  10. Peggy
    Peggy says:

    Needed this. I get so depressed hubby wants go somewhere but sometimes MS just doesn’t allow me. Then I get angry and upset..not at him as he thinks but at myself. 😡😞

  11. Katie
    Katie says:

    I totally understand and can relate to this! It’s very hard when everyone can go out in the evening and yet again I can’t come but the sofa, TV and chocolate seam to get me through!#ms sufferer of 15years😀

  12. Jan
    Jan says:

    I don’t have a night life anymore because the fatigue is too strenuous to battle. I go to church faithfully every Sunday no matter how I feel. Though I’m totally exhausted from going and the vertigo never goes away, so be it. I’m just grateful to see everyone once a week. Blessings to you!! Jan


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