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  • alicehoo10

    Hi everyone. I have another problem with my husband.  Back in May, I got upset with him and decided it was time for separate rooms. He didn't like our mattress ( he'd slide off of it),  he wanted the head and feet elevated so he could sleep , (I needed it flat for my back), he wanted to bring handfuls if dirty tissues to bed. I couldn't stand having them in bed. So I broke down and bought him a new mattress and adjustable bed frame and changed his study into a bedroom with a smaller desk in it and then out a 43" tv on the wall for him. He seems much happier there with his new bed.   I'm much happier too. I'm actually starting to get some sleep at night. 

    the problem is now he spends most of his day either watching Netflix or sleeping. He only gets out of bed to go to the bathroom or eat.   I'm worried he's going to lose the strength that he has left in his legs.  

    He also looks unhealthy.  His eyes have a sunken red look under the  eyes. My daughter saw him when he came to the kitchen to eat dinner and had tears in her eyes. She had to leave the table for a few mins.   My son also commented that dad looked bad. I agreed with him. 

    John was suppose to have a physical last week but is having his second sore throat in 3 weeks.  He's finishing up a Z-Pack tonight.  Then I'll have to reschedule his physical  

    im very worried about him    I guess I should start with his primary dr then call his neurologist  I think something is going on with him but he won't tell me he very seldom even talks to me now   When we started on this road together we agreed  we would travel it hand in hand, he wouldn't be alone  but now he won't share/ tell me anything  is this normal?  Am I missing something?  Did I make his room too comfortable? Is he just getting worse and won't tell me  he is scaring me more by not talking to me if that's the case  

    only good thing I have found that has come out of his spending all his time in bed is that his legs and feet aren't swollen anymore thanks to his keeping the legs elevated  

    any suggestions how to help him?  Maria are you still out there? Has anyone else gone through this ?


  • jasonprestovfd
    I dont want to say that this is normal,  but I will say I understand. I have experienced a time when I did exactly what your husband is doing. For me it only lasted a week or two before I decided that I just had to find a way to get up and moving. But sometimes its easier to give up instead of fight. I'd suggest trying to find a way to try and motivate him to get up and moving. But be careful, its easy to come across to him as you are being bossy or judgemental. Try to encourage him without telling him what to do.
    Ultimately it's up to him to decide to get up and moving. 
    good luck and i hope my advice helps some.
  • alicehoo10

    Thanks Jason.  He's always been the one who couldn't sit still, I was the one who enjoyed doing nothing. We seem to have switched places here.  The dr today said it could be the reaction of the infection with the MS.  So now I must figure out how to balance his resting while on the new antibiotic and keeping his legs moving so he doesn't lose his ability to walk. He's pretty weak right now.    I do find that when he ignores me or just refuses to answer or acknowledge me that get mad at him. I can't help it, it's so not how he use to be.  Then I get mad at myself for getting mad at him. It's a vicious cycle I find he and I find ourselves at times.  

    I will definitely try to change how I talk/ask him to do or try something.  I appreciate your suggesting this.  Sometimes I get so involved with problems that I forget about his problems well, not actually forget about them but maybe it's I put them aside because of my problems. I'm probably not saying that right but hopefully you know what I mean 
    to be honest. 

    I moved him into his study and bought him a new mattress and bed frame   so he can sleep with his feet and legs up   I also got him a smaller desk and a chair without wheels as the therapist felt a chair with rollers on it wasn't safe for him. Then I bought him a new TV for his room.  So I can see where he feels more comfortable laying in bed more.  At least he was getting up until he came down with strep throat.   I am hoping it is just the sickness that has him down and that he will start getting up when he feels better   

    Today my thought was to see if he'll ride the recumbent bike everyday with me. I've been exercising on it every other day and I thought maybe I'd try to get him to work out with me.  We shall see. 

    im worried about him but you and Maria have helped   Seeing the dr yoday helped a little too 

  • jasonprestovfd
    dont be so hard on yourself.  MS is very frustrating for all of us to deal with. When you get frustrated just take a step back and try to relax to break the vicious cycle.  I would guess the infection has alot to do with the situation.  When I'm sick it is like I had a stroke, my entire left side dosen't work and I can not walk.
    hopefully the antibiotics help and this issue goes away in a few days. The recombinant bike sounds like a good idea, I am currently going to physical therapy and one of the things they have me do is ride a stationary one. 
    good luck and keep us posted on his progress,
  • maria1
    Hello Alice,

    Yup, I am still here, though I am growing more unable. It seems that whatever i do takes a toll. I too am sleeping more. I work up enough energy to do something then it is like I am passing out from the strain. Lately I hear the same from some other people who are not living with ms, there are now including your husband, four of us who cant wont or dont walk, or who are falling. 

    My last trip to the md for a check up had a blood test that says my kidneys are not doing what they are suppose to do, but we will wait three months, ah, always the wait and see routine, unless I complain about something new. 

    There is so much about the body and the mind and how complex they are that it amazes me we/scientists can figure any of it out. 

    Since your husbands coloring looks off there must be something going on, sometimes constipation could interfere with coloring, lots of celery will help, is he still drinking enough, ensure or gatorade made may help besides water, but a trip to the doc should happen,

    You are a good partner, your kindness to your husband is very generous, it shows the tenderness of your love, and the love he has shown you, I appreciate and probably do others who read your posts, your sharing and caring. Friendships through hardship are strengthening us, hearing about them are making my day brighter and lighter. 

    I spend most of my time celebrating anything, you and your husband are a good thing to celebrate, through all the hardship the love is shining through and it sparks a warmth I enjoy,

    Lately my partner and I have been looking at the inevitable end of life challenges, and how we want to face them together, if we can, giggle.

    I still strongly feel that a life lived is one with no regrets, yes, there are things we could wish were different living doing things to minimize the regrets is the only life worth living, so, Alice, trust your heart and do your best, it has served you and your husband well  and you will smile with joy that you have done your best. You are a star and your marriage is a medal of honor. maria
  • alicehoo10

    Maria, you brought tears to my eyes.   Thank you for the kind words. 

    I took John to to appointments today.  One was to have his Baclofin pump filled and the other was to our family dr   After two rounds of antibiotics, he still has a sore throat😔. So we are on to round three   He was too weak to walk to I had to ride him around on his walker.   He was exhausted when we got home.   Of course he fell after we got home so I had to have my son come get him off the floor for me.   The dr feels that the throat infection could be irritating his MS   My worry is that while he needs to rest while on the antibiotics he will end up too weak to walk anymore.   I'm not sure how I will deal with him if that happens. I guess I need to talk to his neurologist. 

    I don't think John nor I regret our lives. We did the best we could   We also raised two lovely bright children whom I am very proud of.  I do wish occasionally we could go back and relive certain parts of our lives.  But I honestly don't think I'd want to change much.   John has always been an excellent husband and father there's nothing much I wouldn't do for him. 

    I guess this is part of the progression of his disease along with ha ing the virus going around with everything closed and just starting to reopen. Everyone has an equal chance of being depressed lately. 

    I will try to keep my patience with him and try to continue to see the bright side of things. 

    Thsnk you Maria for talking. You have a way of calming me down and showing me that things are ok and just a natural progression of life.  We will all be ok   
    I'll keep you and your partner in my prayers  I know you have a lot on your plate too but you never complain.  Thank you for being here. 

    oh one last thing to make you smile 
    while we were at the Dr’s today. I kept getting call after call from my 6 year old grandson. (His mom put FaceTime on his tablet so he could FaceTime me whenever he wanted to ). I was in the middle of discussing John's medicines when he started calling. I'd push the hang up button , he'd call back. This went on 5 times. I apologized to the nurse and answered the 6 th call. Before I could say anything. Nolan said. Grandma! I have a surprise to tell you!  I asked him what it was. He said his 2nd tooth came out   He was so excited he put his mouth right up to the camera so I could see it. Lol. I was very excited for him. Then asked if I could call him back when his Pappap and I left the dr. He said ok. He loved me and bye.   He was so excited he had to tell me   He definitely brightened my day 

    it took us 13 years to have our first child and two more years to have our second.  I'm beginning to realize God knew what he was doing having us wait so long for kids. For now when I need my days brightened, I have grandkids young enough to make me smile and tell me they love me instead of young adults busy with their own lives. 


  • echobird
    Hi Maria I'm sorry I haven't been on in awhile to check up on you and talk to everyone as much. I've been dealing with a lot myself between my MS and dystonia. But I was shocked to hear how bad you have been doing! You've always been like my compass so to speak and if something ever happened to you I really don't know! I really have always admired your compassion and your encouragement that you have always shown myself and others on here.
    through the years I've noticed myself different changes as well just like John and his wife have been dealing with. It's like I started taking provigil along with my ampyra but lately even that isn't helping as well.
    But back to you I really have failed you and others by not checking in to make sure that you are ok and for that I'm truly sorry. If allowed I'd like to give you and your spouse my email address. Because once they close the forum down I won't have a way to make sure that you're OK. Please try and leave a message on the forum if that's okay and if you want my email address.
  • maria1

    I am sorry what I said brought tears to your eyes, I thought I was sharing with you how happy I am to hear about your relationship with your husband, romance is always for me a good story.

     Chicken soup! If you like Chinese chicken soup it is easy. chicken, water, a slice of ginger, one scallion two T sherry. Bring to boil, skim off scum, lower heat to simmer. Simmer for four hours. If the chicken is good quality you can use the meat otherwise it loses flavor and should be discarded. Strain the soup, cool and skim off the fat. reheat with fresh sliced scallion. The house will be filled for four hours with the aroma of chicken soup. I wonder if they every found out why chicken soup is magic?

    Then there is you, chicken soup is good for you too. You can add spinach, tofu, corn, anything you want to make it a meal. 

  • alicehoo10

    Oh no, no worries Maria, you brought tears to my eyes but in a good way.  You understood. I appreciated that. 

    I found a program for caregivers. There aren't any online classes in our area that I'm aware of right now but I've emailed asking about on line classes and the workbook they use. I'm hoping I can at least purchase the workbook to start learning more on caregiving  that should help a lot. At least I hope so 

  • echobird
    And Alice you are a very loving wife! You sound so devoted to your husband it's unreal. I used to be very active off and on over the years and between all of my health issues I've found myself going downhill further and further as well. I used to be active and trying to help others left and right. But after my diagnosis things just kept getting worse over the years. Now I'm so much like your husband it's scaring me. I've come to terms with what is happening in some ways but in other ways not so much. It's likely though that his MS is acting up big time because of the infection. Did they do throat culture's on him to see what it is exactly going on. What type of infection he has?  Whatever it is it sounds very bad and it might be time for IV antibiotics. I hope and pray that they figure this out soon.
  • alicehoo10

    Echo bird,  I did get him to a new ENT dr last Wednesday. He doesn't think John's throat is sore from being sick or MS. He believes it aging  He said John's throat has a very small opening for food and drink from muscles tightening up. He wants to get and look at John's tests before making a final decision and plan of action.  So I'm waiting to hear back from him 

    I am now looking into Palliative care for help with John. I have a phone call next week with a nurse practitioner to see if that is what John and I are looking for. I just know I need help keeping him safe and healthy.   I don't know if he's ready for it but I need to look into it. 

    I'm so sorry to hear you are going through some of the same changes my husband is going through.   I know it's hard for me to watch but it can't be as bad as what he and you are going through.   I am just in awe of my husband , you and Marie with what you have to go through with MS and how well you deal with it on a daily bases.  So although I get to the end of my rope almost daily with my husband. I always feel bad afterwards for I know this isn't the real him , this is the MS and there's not much he can do. I have choices, he doesn't.  Makes me love him more not less 
    know that you have people standing with you cheering you on daily through this disease. I for one will be one of them. My best wishes are being sent to you 

  • maria1
    echobird, you have not failed us. Everyday you are kicking and screamin is a success. I watched the Ridley Scott movie, The Martian with Matt Damon, about an astronaut stranded alone on Mars, makes me think that we now are all travelling through unchartered waters and some of us are panicing. The pandemic is so strange for some people, not us, we know the unknown ha ha. I am not in pain just sleeping more than before and forgetting more and moving more slowly, like watching paint dry. 

    If you message me your email I will message you mine, that goes for everyone. I have been on this site for eight years, it is a home for me. For the homebound like me, this site has been a link with the outside world. Time stops when isolation abounds. 

    I have been remembering a man i met in 1984, I dont remember his name. He told me he was in Buchenwald concentration camp. He said, when he was in Buchenwald there were ten thousand men, of the ten thousand men they picked two hundred men, of the two hundred men the picked twenty me, and he, was one of the twenty men that they let live.
  • alicehoo10
    How do you message someone on here?  I'm feeling old. I have no idea 
  • alicehoo10
    FYI the book the Martian  was so much better than the movie.  I read the book first and then the movie cane out. Movie was good but book was so much better 😬
  • Kris-MSConnection
    Alicehoo10 --

    To message people:
    1. hover over your name in the upper right
    2. when the drop down menu appears, click on 'Activity Feed'
    3. then click on 'Inbox' from the left side navigation
    4. click 'New Message'
    5. then click "Select' to bring up a window with your contacts and/or connections
    Hope that helps.