My Life & MS

The first five years were supportive and livable. Now, I’m too tired. I’m too tired to care about much. My marriage is just us passing in the hall. My kids visit when they can, but no one wakes mom when she’s asleep – even though they’ve been told 1,000 times (and have seen it) that I can fall asleep in less than 10 seconds. Why NOT wake me? Then I know you were here to see me. I may get a conversation. I will get a hug!

Friends don’t come because my husband is too quiet, and we can’t disturb him. Shhh…

I could go out… that requires great planning. I need someone strong to get me down the four stairs to our driveway. I need a ride, and someone willing to get a wheelchair in and out of the trunk and push me around. They might, but who really wants to put that kind of burden on a friend. (OK, there’s a few friends that I would ask – EXCEPT…)

Before any of “that” can truly happen… I need my hair done, a shower, my nails done, an outfit chosen… a shower, in of itself, is a full-days project. I can’t do it all in one sitting – I’m too tired, too weak. It has to be broken into 1/2 with a nap in between + one after. My daughter will do my hair and help me dress IF she’s free then – but if she has an engagement, that will always come first. (Even if mom hasn’t been outside in 7 months). I digress.

BUT, all of that has to happen IF and only IF, I can muster enough energy and will-power to actually go. I cancel more often than not…the whole is just TOO daunting! Most people just think of going to they symphony, pick out a nice dress, get ready, and off they go – OH, how I wish for those days to return!! They won’t. It’s only getting worse. It’s PPMS, to be expected…depression, to be expected.

BUT, family pretending isn’t, and that’s what hurts. They’re there out of obligation. Sure they love me, but they’d rather be doing whatever fun thing they’d had planned…and sadly, I know it.

This makes me care less. Why shower twice a week? No one’s coming over? Why have your aide do your nails? Who will see them? Why straighten your hair and make it as pretty as a picture? No one will see it – not even me!! I’m in a wheelchair, and have a 3X5 mirror that I use for make-up (LOL).

I just can’t figure out why I’m still here most days – I’m useful to no one. Helpful to no one. Meaningful to no one. When I leave earth, they’ll mourne for a few days and get back to their regular lives because I wasn’t part of it anymore – except to mess it up.

I HATE THIS DISEASE!! OH HOW I HATE IT!!

I had a great life! It just left. Now, I’m left with whatever this life is. I’m not sure I’d actually call it a life.

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Comments

View Comments (4)
  • ASAPcindy
    9 months ago

    Everyone has a different story but the same struggle, and I can totally relate. I have to make myself clean up. I hate to shower, the worst is blow drying my hair. I overheat and have to take a nap afterwards, then my hair looks all lumpy. Oh vanity thy name is Cindy. You would think I’d care about using a walker or spilling my food but I don’t. I just want to look nice, and if I don’t I think i’d rather just stay home.

  • Erin Rush moderator
    11 months ago

    Hi Jesusfish5! I am so sorry MS has affected your life so deeply. As you can see from the comments from rolly and MsGelfling, you are not alone!

    I don’t want to give you any pat answers or hollow phrases. Life with MS is hard. Period.

    I hope knowing that you are not the only one going through this offers you some measure of comfort.

    One of our contributors wrote about his bout with feeling pretty hopeless here — https://multiplesclerosis.net/living-with-ms/purpose-having-a-hard-time-finding-meaning-in-life/comment-page-1/#comments. Community members shared their comments at the end of the article. I thought you might find the piece and the member comments relatable.

    I do hope you are able to find some joy and meaning in your life.

    Best, Erin, MultipleSclerosis.net Team Member.

  • MsGelfling
    11 months ago

    Jesusfish5, I know just where you are. I share each and every feeling you talked about. It’s an old saying, and who knows if it helps or not, but I’ll pray for you and for me.

  • rolly
    11 months ago

    thanks jesusfish5 for sharing your thoughts, even though it made me sad to read it. i definitely get what you mean. ms is a lonely disease. what i mean is it makes us lonely, even if we have family around us. it must be difficult for others around us to understand that even if we feel tired almost all of the time, we still like to have company when we feel up for it.

    the circle of friends over the years has dwindled to practically zero. too often, when we were invited to someone’s house or had agreed to go out with friends, we had to cancel on them at short notice because i wasn’t up for it. so at some point they stopped asking us. also the logistics of getting me in my heavy powerchair into someone else’s home seems to be putting people off. it just seems to much hassle for them, so why bother? then we started to ask them to come to our house, to make it easier. but they seemed uncomfortable when they did come. it seemed like it was a duty call for them. and when i needed to rest after dinner, they seemed put off. after all, they had made the ‘effort’ of coming to our house and see us, so couldn’t i make an effort of at least spending the whole time with them? they didn’t seem to realise that for me, having a meal and making conversation for an hour or two already required more energy than i could muster?

    so i got more and more isolated. i urge my wife to see her friends once ina while, as i feel she deserves to have some ‘down time’, without having to look after me the whole time.

    going out has indeed become too daunting. getting transferred out of bed, washed, fed and dressed for a day at home is already taking more energy out of me than i can find. dressing up for an evening out is more than i can handle, and i don’t even need to have my hair or nails done because i’m a guy. it should be simple, but it isn’t.

    oh how i miss the days when we would dress up nicely to go to a concert or a nice meal out, and when i could just hop into the shower and get dressed in no time. my main complaint at the time was that my wife needed so much more time, because she needed to pick out a nice dress, put her make-up on, etc. etc., while i had to wait for her. now i would wait for her gladly, if only i could go out at all.

    yes, i hate this disease, and what it has robbed me off, and your words therefore struck a cord with me.

    but at the same time, although i’ve had long periods of depression and asked myself what the point was in having a life like this, there are still periods when i believe it’s stll worth living. i know my wife loves me, and i’m lucky to have her. i know that not everyone is in such a lucky position. all too often i hear of partners running away because they feel they cannot cope with the situation.

    i would like to believe that your family still loves you, even if you feel that you’re not useful to them anymore. I’m sure they’d rather have you around than not, even if they may not give that impression. ms is a bastard. it affects not only us, but everyone around us.

    hang in there!

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