Things I wish more people understood about living with multiple sclerosis

Lately I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with multiple sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements, diet and medications that work to slow the progression down, but that’s not a cure. They are limited in what they can do and don’t work for everyone.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and could be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, my body is fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tougher times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear “no” more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash, or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head, even with lots of notes and reminders. I still confuse things.

11 replies
  1. Tracey
    Tracey says:

    All I can say is I’m in a wheelchair, so inviting me means nothing. Most likely I can’t even get into your house. A good day is one I haven’t wanted to end this hell.
    It’s hard to explain what hopelessness feels like.

    Reply
  2. Gale Langseth Vester
    Gale Langseth Vester says:

    ‘Things will get worse’

    Hoo boy, and sometimes faster than they had done before. I’d recount my own experiences of late, but I can’t remember all of them. I can tell you that they did get worse for me, faster than they had done since my first spinal tap. So anyone who wants to feel superior to me may well do so, but if they have this MonSter, too, time will only tell.

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

    Thanks Penelope you have a good way of explaining some things that makes our life better. I had a problem last Sunday when one of my tyres went flat on my wheelchair. Now I have a shower chair that is self controlled. But it is bigger than my w/c and harder to get into the toilet space. After 3 trips it got really hard so I had to use the damaged w/c. One little problem I had was one of the s/c wheels was getting lose and needed tinting up. So I had to pick up my transfer plate I dropped earlier, and place it on the bed. Then go back to the dining room and get my tools. then go back to the bedroom. Place the toolbox on the bed and using the plate transfer to the bed, after raising it. Select the right spanner then tighten the nut on the lose wheel. That being done, I had to take the toolbox back down, then go and get the plate for any transfer I might need.
    This took about 20 minutes and my fatigue started to play up, and this was before the toile trips. So the whole day was very tiring but we got the wheel fixed on Monday and that was good and maked me very apricate the wheelchair and what it can do.

    Reply
    • Margaret P.
      Margaret P. says:

      People just can’t understand all the steps one has to go through, and the excessive time and patience it takes, to get the simplest thing done. I admire you for getting all that done Rodger, it’s no wonder you were exhausted afterwards. Well done and best wishes for the future,

      Reply
  4. bunny
    bunny says:

    organized and put together perfectly!
    thank you 😊. i will print this out, as i do with many of your posts, make copies and start just handing them out. less stress than trying to explain or educate some non-MSers.

    i hope 🤞🏼 your bathroom gets done in a timely manner-very exciting 😄.

    thanks for your post 🥰

    Reply
  5. shari
    shari says:

    I live in Canada and I woke up this morning thinking of you, that is the best part of the internet. I hadn’t seen a post in a few days and wondered how you were? I can tell things have become more challenging for you and am so amazed at the effort you make to post your positive messages. You are such an inspiration to so many, if I find I am having a hard day I often take a moment and think of you, you are such an inspiration. I am wondering today if you got your bathroom completed? I am wishing you the very best for this day Penelope, I hope someone knocks on your door today and offers a little help or even a visit. Take care.

    Reply
  6. Jean
    Jean says:

    Melinda I pray for you and your family because I know how hard you try. I remember what you went through years ago and you stayed the course. After 65 years of diabetes and some of the other things that come it is amazing to me how much our bodies can endure. Three years ago the told our sons that I would not live much longer to make arrangements. Three doctors agreed but God had other plans. Those three doctors all told my family that only God saved me because they could not. I know that our Lord has plans for you. Today I am very depressed but I need to kick myself and remember God has me covered. You have so much to deal with but you are strong and you have a family that needs you. I wish I lived closer.. I need your phone number and when is the best time for me to call. Do not let negative people make you sad. I wrote you phone number down but can not find it please sent it again and the best time to call you.❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

    Reply
  7. Jane V
    Jane V says:

    I hear you! I have completely stopped saying, “Gosh, I’m so tired!” because the response I ALWAYS get is, “Oh, I get tired, too”….. Grrrrrr…. It’s different! So opposed to me getting mad I don’t say anything. Suffering in silence is better than wasting energy on anger.

    Reply
    • Janet Stanzel
      Janet Stanzel says:

      Penelope, your post today could have been written by me. Your experiences and thoughts are so similar to mine…like two peas in a pod. 😊
      If only non MSers could really truly understand what we go through every day. I often feel like I am explaining things for the millionth time to a brick wall 🤦🏼‍♀️

      Reply
    • Margaret P.
      Margaret P. says:

      Jane V. That happened to me too and it is so frustrating. I don’t see why I should suffer in silence. so I straight out say,” My MS is playing up and I need to lay down/take a nap/can’t go out” etc. They can’t argue with that. Otherwise they can only relate to their kind of tiredness, and while it makes us angry, it’s not their fault if we don’t explain and educate.
      All the best 🙂

      Reply

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