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 up my glasses 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 LASIK surgery to surgically 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’s never experienced it before.

Sometimes just trying to read an email or 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; you slowly watch your body deteriorate. I can’t really see the change from day to day, but when I look back at how I was doing a month ago or a year ago compared to today, I find noticeable differences. And if I think too much on it, I can get really depressed about it.

What I have to do 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, 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, create 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’d be amazed at just how long of a list that actually is. I believe in you!

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

84 replies
  1. Dawn Smith says:

    The last three or four years have been hell. I’ve went from walking, driving, horse riding to sitting inside, hardly getting out watching TV, and using a walker in the house and wheelchair outside. I get so down when I think of the things I could do and took for granted. The one thing I have learned is never take anything for granted in this life x

  2. Anj M. Gibson says:

    My biggest fear is losing my eyesight altogether. It’s scary. It does make you more empathetic to those who have never been sighted. Then you become thankful for what you DO have.

  3. Heather N Philip Ashton says:

    Just cannot imagine your alone thoughts Hun. You are one amazing lady. Keep fighting it you are strong and I am sure you will never give in as it’s the love for your family that Spurs you on. Xxx

  4. Sue James says:

    I so understand what’s being said. I was dx 22yrs ago but symptoms go back another 17yrs. Falls, sight problems, pins and needles, shaky legs, tremors, speech and swallowing issues, these are just a few of the problems I’ve had over the past almost 40yrs and still regularly have to put up with. Right now and for the past week I’ve had no energy to do anything and I’ve been sat in front of my air conditioning unit in my shorts and vest top trying to keep cool as I’m also very heat intolerant.
    I hate ms and the way it treats us, if it were a partner treating us this badly, we’d leave or kick them out of the relationship! I wish I could kick ms out of my life!

  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks for the sharing Penelope. I am blessed with having no optical problems but only getting older. My cataracts will be gone by Christmas now an I am looking forward to being able to read without trying to work out what has been written. This was not MS relate as it can an will be five. I have found out that if MS is involved it is hard to impossible to fix.
    But after 15yrs I have done a lot I would have never thought I could oo. It is these things that make up who I am an I hope I will never forget them.As I have written I have regained my memoreies an it still feels like I’ve wroken up from a nightmare. This is because now I can comprehend some of what carrieon when I was oblivious of most things as MS had blocked most away from me for so long ..
    I suppose at least I accomplished a few things I can be proud of what I achieved.It’s these things I use to help me put aside MS for a time.

  6. Amlin Rios says:

    In last year I feel and look 15 years older…I’m so tired of being sick, so frustrated….I can’t accept this disease…since diagnoses I’m on denial….Im tired, weak, dizzy at all time…affecting my production at job….I’m TIRED of it….

  7. Chris
    Chris says:

    Thank you Penelope! You are an inspiration and you are brave! Love it! Still going strong with ms, not letting it take away from life… Just finding new ways to do old things! Blessings!!

  8. Stephen
    Stephen says:

    “It’s actually quite weird and hard to explain to someone who’s never experienced it before.” This is the best one sentence description of MS I’ve ever seen. I may have to quite you here and there.

  9. Kerry Greenway says:

    I was recently diagnosed after a dr put everything together, my memory loss, my eye sight going, my extra low blood pressure, and the light headness , my being tired all the time where I can sleep for 18 hours and still be exhausted, the pins and needles in my hands and feet for now reason and the double whammy when my bladder no longer told my Brian that I needed to go so nor i have a permanent catheter and bowel medication because it too is not functioning very well either but I refuse to have at 47 bag as well. I never put it all together but I have been in hospital now for 17 days and it took this young intern to point it out to the medical specialist and dam they cross the dots and they all add up with me having MS. I was shocked and first then the why me and then my very best friend more like a sister got breast cancer it changed my whole outlook and sure there will be thing that I can’t do anymore but then there’s what I can do. Thank you for your post it feels good to tell someone who understands

  10. Sarah Mathews says:

    This is so true,as I sit here all swollen from the hot weather. My right leg in particular just not wanting to do what I want it to. The banging headache the blurred vision, the double vision and the blind spots. You really do feel very down and on your own. Thank you Penelope for just being there and helping all us msers.

  11. Carolyn Connick says:

    I am so sorry this disease has fallen on you; I am so inspired by the way you have chosen to deal with it. I send you my prayers and a loud round of applause for your courage!

  12. Doug Wineburner
    Doug Wineburner says:

    luckily my vision hasn’t bothered me much I have to wear glasses for distance like watching tv but my worst thing is my myasthenia gravis disease affecting my strength in my legs I can’t stand or walk hope you can continue on like you are good luck with it.

  13. Lynlee Tomos says:

    Thank you, once again, Penelope. This one really helped me. I appreciate your honesty and love the encouraging words you leave us with, after we’ve read your struggles and can identify. Wishing you a beautiful day, Sweet Lady!

  14. Sandra Mello says:

    I am noticing a big decrease in walking now. My legs are heavy and painful. I have problems with my eyes and I constantly have itches anywhere and everywhere!!! I am so worried about my legs!!! They say walking is good, but I can’t even do that for long!!! Yesterday, I had electric shocks in my big toe. It hurt so bad. What is happening??? I still will be positive especially reading what other people are going through!!! Bless you all!!! You are all in my prayers daily!!! XXX

  15. Tania Padilla says:

    The slowly deterioration… started with my left eye……then the right… my arms….slowly but continuously……..trying to get used to a new style of life. Reading the article made my day….how great I am in doing new things……It put a smile in my face…..

  16. Janis Devinney Smith says:

    Yes! The eye problem is probably the worst thing I’ve dealt with. I was completely blind but now can see again. I thank God for what I am able to do. I know that some people have never had sight, never had legs, never had arms, Ect. Some will not live to see the sunset or the sunrise. I thank God for the life He gave me and everything that involves for I know there’s a purpose in it all! Peace and love to all! ❤️ Keeping this POSITIVE LIVING WITH MS!

  17. Marie Caruso says:

    For me things are blurry, it gives a feeling like I need to rub my eyes. My focus goes in and out. It’s easier to read my phone I think because of the brightness of the light. Can’t read the newspaper or books anymore, gotta keep fighting though, do what I can do and keep on trucking. 🙂

  18. Aileen Brown says:

    You are way too young to have PPMS you definitely got a bad roll of the dice but hang in girl if our love virtual hugs etc could help you would be running about like a teenager xxxx

  19. Cynthia Smith says:

    Since taking tecfidera, my skin is always having a strange feeling and feels like I am tingling, burning and itching at the same time, there is a strange sensation going on. Have anyone felt it that is on this treatment?

  20. Gemma Harris says:

    Hugs Hun. It kinda creeps up on you. And with ppms it really sucks for you. Virtual love and hugs. Take care of yourself and let everyone else do the same xxx

    • Leena Kantola says:

      I have also noticed the effect of the diet – and pilates with the other varied exercises. I have not been in a wheelchair but years ago my legs were some time senseless after a sinusitis.

  21. Lisa Rombough says:

    Vision is my biggest change as well. I struggle with the fact my children are only going into 5th and 7th grade. I am scared to death that they may someday be the ones helping me instead of me helping them. It’s supposed to be my responsibility, darn it! I pray that I will be able to still work until they have finished their schooling, including college. Thankfully, it is really mostly vision that has been affected up to this point.

  22. Kathy Buys says:

    Look @ photos, MS can attack & change your appearance. I don’t have the dexterity any longer for hair & makeup. After dragging MS around for 36 yrs, it has left it’s mark on most aspects of my life. The first 15 yrs while working, raising kids & hubby I used to tell myself “the worser I feel, the better I look” A compliment on appearance when your fighting to see straight & walking with fear & caution, a compliment gave me self worth. After all they didn’t see my smeared & fractured vision. They didn’t know that rising, stepping, & speaking were difficult. These are things we hide. No one wants to feel less than, criticism without knowing is so painful. Embalance & a stumble occasionally could be laughed off. Then it becomes your norm. We need to be kinder to one another, support makes a huge difference. I can’t explain all the changes that have occurred. Their are some that only I or my Dr know. Some there is no magic fix-no pill-no injection-no IV-no magic diet or exercise. We are left with our condition & must carry on the best we can. So please-myself included–know that changes occur from disease but that person you love & care about is still there. Wrapping may be different but my heart is still there…

  23. Harp Jackie says:

    I have had ms for 25 years and watched the slow progression of things I can no longer do. I think the trouble with my eyesight is the most concerning. I had cataract surgery last summer and have had trouble with both eyes focusing together since then. I was reassured by eye doctor and neuro both that it was the ms causing the problem and if I focus I can manage. which is true, but slowing down to be able to manage things is hard to do, as you know. But we will persevere. You give me hope and encouragement.

  24. Marianne Wallace says:

    Its also my ‘mental state’ that has dramatically deteriorated. I’ve become withdrawn, depressed and anxious. I hate it so much. That, alongside the physical deterioration is difficult.
    Anyway … I still keep fighting and have done for 28yrs now !! Phew !

  25. Desi Joel
    Desi Joel says:

    Penelope, as always, well done!
    Would you be making any more of your memes? There’s a point I’d love to see made in one of your friendly memes! For loved ones who get aggravated when they haven’t been warned or informed about a new issue. Umm…. We are learning all this right along with them. Thirty plus years since intitial diagnosis, and I still manage to “come down” with something new to me. Expressive aphasia had me hospitalized for part of May. A loved one was so so angry that I didn’t tell her about it….umm, aphasia literally means a patient cannot find words, spoken or written. Sigh
    Thanking you for the tremendous contribution you make to the community!

  26. Shelly
    Shelly says:

    One of my first “signs” of MS was optic neuritis …. It wasn’t realized until after my diagnosis 15 years ago that it was a sign. I haven’t had trouble with my eyes for about 13 years, and don’t really have any major issues with my illness, other than fatigue and lack of tolerance for heat and cold. Yesterday, I heard my physio therapist tell another person he was treating that Vitamin C is very important for pain management – I have taken Vitamin C for at least 14 years, every day. If this is helping me on my journey, I’ll take it till the day I die! Kudos to everyone who is giving this “MS” journey a fight worth fighting – I’m right there with all of you! MS doesn’t have me, I have MS!

  27. Jo Crolla says:

    Joining in with this one. My eyes! Aaargh! Well, definitely the left one Aside from the MS ‘vibration’ (good description) I also injured it a while back and then a few months ago the jelly detached from my retina and stuck to the lens giving me delightful ‘pond vision’ . Not only all that it’s also just got over a year of persistent corneal erosion (touches wood) which is utter agony and has given me weird ‘flicker’ effect to cheer me when I wake up in the mornings . Oh and I’m also severely myopic yet my corrected vision is above average……. I thank my blessing everyday that I can actually see at all!
    (((HugsnotMSones))) to everyone xx

  28. Odette van Straalen says:

    Sometimes I feel more like an alien than a human. Visual disturbances are often to blame for that. How to explain that the world is on a tilt and there’s 3 moons and silver sparkles everywhere?

    Please don’t get depressed Penelope, I know it’s difficult not to sometimes, but it’s hard to pull back when you do go down that path and nobody likes it there. Your fans are rooting for you..x

    • Leslie Beaver says:

      My neurologist showed by bouncing eyes to my wife when I was first diagnosed. With his direction she saw. And understood. The look on her face said everything.

  29. Samantha Bell says:

    This is so true. We dont notice the slow deterioration until we compare with our past. I try not to focus on that too much but am aware of the changes. Many blessings and gentle hugs for you penelope xx

  30. Katy Cardinal says:

    I avoid contact with people from my past because of the changes in my “looks”. Every magazine seems to be filled with athletic women, running, exercising, glamor makeup shots. New people who have come into my life do not make comparisons. I’m just me.

  31. Kathy Hamilton Doiron says:

    In my FB memories for today, a post came up from four years ago when I was in Virginia hiking to Natural Bridge with one of my sisters. The outside temperature without the humidex was 104 degrees. It amazes me that just four years ago I could hike at all, let alone in temperatures I couldn’t even stand up in now. Still, I AM a warrior! #fightingMSlikeagirl

  32. Kris Tymchyshyn says:

    I just say it’s like an astigmatism that can’t be corrected and it gets better and worse… One eye is dark the other is bright… One eye I cant get definition from and the other I can … Sure sucks trying to read street signs though.. Ugh. Lol

    • Karen Sutton Porteous says:

      Well done coping. I’ve had a taste of it a few times but luckily have one eye that is not too bad and on the mend at the moment. You could never describe how it is to healthy people could you 😟

    • Kevin Cruise says:

      That is what is literally running me crazy. My right eye is OK, but the left eye no longer has any definition and I can’t explain it to people. Even using bifocals doesn’t help and it’s very frustrating.

    • Mindy Holley says:

      I use a dirty window analogy: it’s like looking through a dirty window where there are areas you can see through better than other areas because of the buildup.

  33. Leslie Beaver says:

    Eyesight issues are tricky to explain but I approach it this way. I first explain that my eyeballs literally vibrate. Which make visual correction impossible as the target is constantly moving. Plus that the overall clarity of my sight is diminished. People seem to understand.

  34. Els
    Els says:

    Your the best! It’s amazing to experience your optimism daily. Hopefully you can go on like his for a very, very long time!

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