Watching my life change isn’t easy

I remember getting my first pair of glasses when I was 12 years old. I left the store the day I picked them up and was shocked at how clear I could see everything. I was able to see every leaf on the trees outside. They were green blurs before, but with glasses I was able to see every vein and ridge. It was amazing to me how beautiful the world was when everything was in focus.

About 10 years ago I had surgery to correct my vision so I wouldn’t have to wear glasses any longer. That was another wonderful moment because I no longer had to deal with fogged up glasses on humid days or raindrops on rainy days. Everything was beautiful once again but without the need of a pair of glasses to help me out.

But now, because of multiple sclerosis, my vision is messed up yet again only this time there’s nothing I can do to correct it. I get these crazy moments when my eyes just don’t have it in them to focus. They will jump around, wobble about, see double of everything, and become weak and blurred. I also have lost color clarity in my right eye so everything is gray scale. It’s actually quite weird and hard to explain to someone who has never experienced it before.

Sometimes just trying to read an email or a text message becomes an impossible task to complete. When that happens, I’m thankful that technology exists today to read them out loud for me. You never realize how important your eyesight is until you lose it.

That’s one of the hardest things about living with a progressive form of MS. I see my body slowly deteriorating and there’s nothing I can do about it. I can’t actually see the changes from day to day, but when I compare how I was doing a year ago to how things are today, I find noticeable differences…and if I think about it too much, depression sets in and the tears flow.

What I have to do each day is stay focused on the things I can do instead of what I can no longer do. My can’t do list has grown much longer over the years, but my can do list surprisingly has grown too. I may not be able to walk more than 5 steps unaided, see clearly, breathe without concerns, sleep through the night, or swallow consistently, but I can laugh at my shortcomings, make a mean fruit smoothie, hug walls and floors with style, invent new words that really should to be added to the dictionary, and create more laundry than a five-year-old.

Try your best to not lose focus on today by looking at the past and dwelling on all the things you used to be able to do. Regardless of your progression or where you are at in life today, your disability has not taken away your ability to live. Pause and think on that.

Don’t let your can’t do affect your can do. You can still do a lot of things, you just might be doing them differently than you did in times past. Be grateful for the things you can do. You’ll be amazed at just how long of a list that actually is. I believe in you!

13 replies
  1. Peggy
    Peggy says:

    Again Penelope you describe things so WELL. THANKFULLY so far my MS has not affected my vision in the way it has you and others. But getting my glasses gave me clearer vision that way too. I found NOW that yes i xan do more than think i just have to do it differently! Love your attitude and appreciate the way You do these articles. Given the vision challenge! Love that positive saying “Without change, there would be no butterflies” 😚

  2. Colleen Dethloff
    Colleen Dethloff says:

    This is such perfect timing, it’s surreal!! I’m getting steroid infusions daily this week to help get past this relapse that won’t seem to go away and the steroid pills I took a month ago only seemed to challenge MS to make the relapse more debilitating! Thank you for this article! I always love reading your stuff, but this one really got me. I’m sharing it with my husband and kids to reiterate what I just told them yesterday. 😍

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

    thanks Penelope another great post by you. I had an accident in 1970 at school when a pipette blowing up in my face and left a lot of glass shades in my face. One piece lodged in my right eye and left a scare across my catheter and made it hard to see around. This has not been fixed since then and I got some cataract in my left eye and they replaced my lens with a new one. My right eye might be looked at soon to fix the problem. Meanwhile I have got a long distance glasses and now I have a set of reading glasses and my long distance is resorted so I don’t need them any more. But it is important to get your eyes checked to make your eyes see better. With MS it is double important so we don’t have further things to worry about.

  4. shari
    shari says:

    Hi Penelope, You are such an inspiration for me, when I get down as I sometimes do, I think of you and the load you carry on a daily basis and I try to up my game. You tell it how it is however you always balance it with a good dose of hope and thankfulness of what you can still do, no easy task.
    I admire the strength and dedication that it must take to write this post on a ongoing basis, it is truly remarkable. Thank you for the voice you are for many.

  5. Meeya
    Meeya says:

    Well, today I have been thinking about the changes too much, and those tears DID flow – due to another f_ing heat wave I couldn’t go to work today, spent too much time at home, feeling sorry for myself… Until your post came along & snapped me right out of it.
    Sitting at my kitchen table now, I found I can still smile 😂
    HUGS. and kisses. 😘

  6. Carole K.
    Carole K. says:

    Penelope and Brigitte,

    You wonderful ladies have the right attitude, because ATTITUDE IS EVERYTHING!

    Thank you for putting a smile on my face!

  7. Brigitte Claudette
    Brigitte Claudette says:

    I believe that staying positive and keeping a positive spirit is the key to surviving and dealing with this disability known as MS. But know that you’re not handicapped but instead you are handi-capable. Just as you will find that there are a lot of things that you may not be able to do, you’ll also find things that you can do just as well, maybe not the way you used to do them but you’ll find ways of doing some of the same things but differently. Like I know sometimes it can get frustrating falling on the floor more times than you care to count but don’t be discouraged just say okay I see now that this is going to be a day when me and the floor are going to become buddy buddy 😂LOL. I’m just going to laugh at myself a lot of times because it is funny sometimes, crawling around on the floor looking stupid but feeling great! Sometimes I just choose to just stay on the floor doing some things cuz I figure this way I can’t fall on the floor anymore cuz I’m already on the floor!! 🤔 I think we need to learn to take some things not so seriously and just accept them as an everyday part of your life. This is the new me and I do love me. 😁

    • Rodger Ashton-Smith
      Rodger Ashton-Smith says:

      Hi Brigitte Claudette have you thought about a wheelchair? I had that problem and thankfully not broken anything so the WC fixed that.

    • Peggy
      Peggy says:

      AGAIN You also have put my adventures into words…before having get motorized wheelchair I too *and still do) crawl around on floor!!😂


Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *