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I hate M.S.

I have had M.S. for 30 years. It’s exhausting. It has robbed me of many important relationships. My children are fed up of hearing about it. I split up with their father a while ago. I’m devastated because my son is embarrassed about my walking (I AM TOO!!) I’m still in my 40’s (Just lol). I want a big, strong man to look after me!!! I fell 2 days ago and hurt my knee (OUCH). Everything is SUCH hard work! Changing a sheet is so Very tiring: It takes ages! I still want to go out a lot but people don’t want to know when you MIGHT look silly walking! I forget…MUCH! I need looking after a lot! Wow I sound like such a baby!

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Comments

  • Judy
    3 years ago

    I myself have been battling MS now for 30 yrs. Just when I think I have it under control, wham another new ailment hits me. And this one even has my doctor confused. It’s like I would be feeling fine one minute and then all of a sudden, I am feeling so weak that I cannot walk by myself or even talk or do anything but go to bed and stay there until it wears off. It could be a few hours or even all day and night. Now the doc tells me its best that I don’t drive right now. So here I go again going through another series of tests. Ruling out the what if’s. Just wanting to know if anyone else has had this going on, I have been going through it for about 5 months now and still no answer. But back to you I thank God that I have a wonderful husband who stands by me, he says that when we married 35 years ago he took his marriage vows to heart. In sickness and in health till death do us part. I just started crying those words were and still are so precious to me. I had met a couple of ladies at my support group to tell me that when their husbands found out they had MS they left them because they could not handle the stress. What a couple of thuds (whimps) The best person in my life is Jesus Christ and then my Husband. He is truly one of a kind.

  • jueyyy author
    3 years ago

    Hi Judy,

    This sounds just like my life! I spend so much time asleep it’s unreal! I can be in town with my mum one minute and all of a sudden I’m too tired to do anything. I have to go home quickly and go to bed – for more sleep! After sleeping, depending on whether I’ve recouped enough or not, I can usually walk again! Sometimes, at the end of a tough day, I’m virtually crawling. I want to move after I’ve got onto the bed but I really AM just pulling myself around!

    I don’t drive and that’s something else I have to rely on other people for!

    I was as much to blame for the split up with my ex. I definitely didn’t want to be with him any longer. The most painful thing was that I had to leave because my children (15 and 21) needed him the most. he was the one that drove and worked. So I now get them coming to see me while HE has them all the time. Leaving my son at only 15 broke my heart. It still does and he has most certainly twisted my boy’s mind. He believes that because I didn’t work His dad should have everything (he’s told me this many times!). I used to laugh with my boy, I’d do tickle torture on him etc. etc. Now he hardly says a nice word to me. He is actually really not nice to me any more and yet I LOVE that boy!!!

    Yes, you are very lucky to have your husband!

    What age were you when you were diagnosed?

    I don’t really get anything new to try. I have had no doctor that deals with my M.S. In fact, for the first time in a very long time, next week I am going to see the professor who diagnosed me 30 years ago! Can’t wait!

    Juliet.

  • Izzi
    3 years ago

    Wish I could walk or even stand. Am 66 and do not think that this is my idea of a good time.

  • jueyyy author
    3 years ago

    It isn’t my idea of a good time either!I’m 49. I still want to go out. I still want to meet a man, something which seems more improbable by the day! I’ve never done anything, even been abroad, since M.S. became the topic that occupied my mind fully, since I acquired it at 19/21!

  • jueyyy author
    3 years ago

    Sue, you’re so lucky!

    I should feel lucky also: I CAN still walk – some days, when the M.S. decides that’s ok! AND THEN, after feeling so grateful for another day of walking, it sometimes breaks down and NO I can’t walk that day – “Mum, can you get the car quick, I can’t go any further!” But, don’t forget to feel grateful that day for another day of walking HAHAHAHA!
    Oh, come on, I’ve had it for 30 years, I HAVE to feel lucky! NO, I don’t feel lucky, I got this stupid disease at 21! 21 – my daughter got so many beautiful presents . . . . and I got M.S. Grrrrrrr!

    I don’t feel lucky! Maybe I will one day . . . who knows???

  • Azjackie
    3 years ago

    I hate this disease too! It is so evil and cruel. I try to convince myself that it was activated in hard working people to slow them down. I try to think this way especially when I fall. Sometimes it helps but often I think what a bunch of bull.

  • Redd
    3 years ago

    Holy crap I don’t remember blogging this article! Oh wait I didn’t but it sure sounds familiar. My husband divorced me as he told me he didn ‘t want to be my care giver. I wasn’t bedridden and was able to walk. Just so incredibly fatigued. Glad that wasn’t the cause of your divorce. I found a man who is very understanding for which I am grateful. I hate, despise this condition. I hate not knowing what I did to cause the switch to flip this on. Mostly I hate that I haven’t figured out how to mentally pull myself up out of this abyss of floundering from day to day not having a reason to get out of bed except that my guy is coming home for lunch and wouldn’t be happy to find me there.

    Thanks for writing!

  • potter
    3 years ago

    How old is your son, he needs to help you do things such as make the bed. To show him how it feels to have MS maybe you could get some elastic bandage wraps and put them around his knees and elbows. Have him move around for a while in the house, maybe he will develop some empathy. It sounds like he already needs to. I have a very supportive husband but I can tell when he needs a break. I just keep my complaints to myself and try not to ask for to much help. After 2 or 3 days I can see his mood changing back to normal. Potter

  • jueyyy author
    3 years ago

    Potter, I’ve only just realised that I can reply on here! My son lives with his father. We split up and I could never take him away from his beloved house/home. Potter are you from the US or the UK??
    You say your husband is very supportive but you say you keep your complaints to yourself??

  • Sue
    3 years ago

    I have to agree. M S sucks, big time. I’m quite a bit older than you and have been married to the same wonderful man for over 40 years. He helps me shower, puts on my socks and shoes,and helps me transfer to the toilet and bed. He does the wash and cooks me dinner. It still sucks. M S just keeps on taking.

  • jueyyy author
    3 years ago

    I have to add that I didn’t split with my ex due to the M.S. It was a mutual, angry, much overdue parting although he always called me idle GRRRR – he needs to try living with the crappy, SO unpredictable disease where walking invariably even wears you out!!!
    You’re very lucky to have such a caring husband! He must be patient because it’s enough to test the patience of a saint!

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