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    • #14360
      Debi Wilson
      Member

      What are some or your survival tips when you’re having a bad MS day?

    • #14362
      Micki
      Participant

      I know that you are asking for answers but, right now, I need the answers.   When I have a bad MS day I take a shower and climb back into jams.   I veg on the couch, watch the news, work on the computer, even play games (and that is the issue) or knit.

      I’ve reached the point where unless I figure out dinner in the AM I’m stuck in the evening.   My husband is older than I.   He is recovering from surgery and I am so sorry about that.   I’ve done everything I can do to take care of him.  But, today because of a real energy draining yesterday I’ve not been so good.   Washed clothes, took the dog to the vet and then I was done.

      I was told that I’m doing a bad job of taking care of him.  He is a good guy – I’ve been diagnosed since 1983 and have done really well until recently.    Things are ramping up.   I don’t know how to get through to him.    I give him articles to read – he goes to doc and he gets “she’s doing really well”.    So, how to I get doc to explain what the hell is going on and how to I get him to understand when I’m not doing everything a “wife should do” that he needs to understand.   Anyone having a problem with families that don’t get it?

      • #14363
        Ed Tobias
        Keymaster

        Hi Micki,

         

        I think you’re doing more than many folks would do. I know how fatigue can be a real killer.

        My only suggestion is for you to speak with the doctor who is telling your husband that you’re doing really well. Try to get him to understand that he’s not helping you by doing that….that “doing really well,” by MS standards, isn’t the same as it would be for someone who doesn’t have our unique fatigue. If the doctor doesn’t understand that maybe your neuro could explain it to him or her.

        I was diagnosed in 1980. My wife is a retired physical therapist. She understands better than 99% of the people, but there are still some days when I don’t think she understands how severe MS fatigue can be. I wrote about this just recently.

        Good luck to you,

        Ed

        I’m Too Tired to Write Tonight

         

    • #14364
      Debi Wilson
      Member

      Hi Micki,

      I understand what it is like to be the caregiver when you are so  fatigued. I have PPMS and  my husband had pancreatic cancer for  7  months, I was by his side helping the best I could. Luckily, my daughter helped also. But, it was me mostly and during the night. I was worn out. It sounds like you are doing the best you can in a very difficult situation. Is there anyone you can call to help out?  I’m hoping you can get some reinforcements so you can get a break!

      Debi

       

    • #14503
      Cynthia King
      Participant

      Well, like most everyone here the main issue is fatigue. You can’t do anything if you can’t get out of bed. I don’t shower on a bad ms day, no confidence that I won’t injure myself. I’ve had ms for twenty five years, you would think my husband would get it. To him, the way I do things is the trouble. If I would only do things his way I would be better off. But the problem isn’t ms affects my hearing. Ms affects my legs. They don’t do what I want them to, why should they listen to him? And PT. I can’t do it on a bad ms day. Every body thinks you can power through this disease. Well I can’t and that doesn’t make me a failure. I am happy to sit with my dog on my lap and a good book.i co exist with ms. It’s like my mother in law- it won’t leave. lol.

      • #14506
        Ed Tobias
        Keymaster

        Mascha and Cynthia,

        I understand. Unfortunately, it’s nearly impossible for someone who hasn’t had to walk in our MS “shoes” to really get it.

        There are some MS groups whose local chapters have gatherings that include spouses and discuss these problems. Do you think yours might be convinced to attend one?

        Ed

    • #14505
      Mascha
      Participant

      Hi

      i have similar issues. My husband says he understands but I sometimes wonder does he?  According to him Saturday was a MS day when we went out(?) meaning we hit the shopping streets in the Uk and explore . We don’t live here. Anyway i had issues. I was still jetlagged like him considering we arrived from Australia a few days before. I mentioned both my eyes were playing up and a bit hazy. This normally happens in my bad eye. It was my menstraul cycle so everything was against me. He told me it was probably that. On our way back we had done too much walking and i was struggling. He suggested i sit at the bus stop while he tried to hail a taxi. He failed, so we continued walking. Stopped at the pub for a drink and rest. I wasn’t smiling or laughing he told me a few days after. I wonder why? I was in pain.

      told me he was tired of my moods and hormones and tells me I’m all over the place and he’s fed up. I need to fix it. I’m unbearable and i just seem to be down.

      5 days after arriving from Australia and i have my menstruated cycle of  6 days!!! Packed up 2 apartments for the move of my son. Arrived in the Uk and had to find a apartment for my son.

      okay my husband arranged everything and i was lucky to do the odd thing here and there. I kept asking what I could do. I did help as in washing, cleaning and maybe arranging the odd moving company.

      He tells me I’m tired too ( he has RA) and jetlagged. Now I understand this and he has a lot on his plate. Except having MS is a total different ball game.

      Am I seeing this wrong?

    • #14508
      Debi Wilson
      Member

      Hi Cynthia and Mascha,

      Feel free to come and share here anytime, I know being able to talk to others that understand can be very  beneficial! It is hard when the people closest to you don’t “get it!”

      All we can do is know our limits, rest when we have to and hope those around us understand. If they don’t there is nothing we can do about that. We have to take care of ourselves.

       

       

       

    • #14514
      Jacqueline
      Participant

      In my opinion  Mascha’s hubby sounds cold and heartless but he could also be scared…scared of the unknown, scared of the future…

       

      Mascha, whatever you do, look after number one – YOU,  and no this is not being selfish…it can be a tough world out there… and this is a tough illness to be dealing with…

       

      Jackie…

      • This reply was modified 4 years ago by Jacqueline.
    • #14516
      Mascha
      Participant

      Hi jackie

      My husband can definitely be direct and cold. He also has no filter. He’s Dutch and very direct as they are. I think it’s more an overwhelming of , too much going on st that time and maybe scared. Now yesterday was a different story sgain. I don’t know if it’s because I finished my menstruated cycle and i was more bearable, but i had an episode of anxiety attack. Not  my husband was great. Hrlped me calm down, held my hand etc. totally different. In general his support is great but it’s up and down. I think when things get too much, so does my MS. I can understand that, but the times he’s direct it’s hard.

      This is his character.

      The more i think about it, the more i think worry and scared.

      you see I’m classed as RRMS but mild form. Do things are going well as in no new lesions or attacks. But i have accumulated a lot of symptoms and it’s a struggle. By putting the word mild by my neurologist, it makes it harder to believe my struggles by others.

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