I Feel Alone

    • Anonymous
      June 23, 2008 at 7:49 pm

      My husband really tries to be there for me, but he doesn’t understand what I’m going through. A lot of times he tries to make jokes to “take my mind off of it”, but that just ends up making me feel worse. Today, my legs, arms, and hands were really weak and my legs were in a lot of pain and it scared me. I tried to talk to him about it, but I felt like I was talking to a wall. Don’t get me wrong, he’s a great guy…he goes to all of my doctor’s appointments with me, and is very involved. I don’t know if sometimes he feels overwhelmed and doesn’t know what to do or what to say?…maybe. But I’m overwhelmed!!! I’m scared!!!What do you think??? -Amy-

    • Anonymous
      June 23, 2008 at 10:16 pm

      Amy, I don’t think anybody can ever understand what it is like and walk in our shoes unless they experience it themselves. The last three years have been the worst for me and Carol needed a lot of time to get used to it. I know she has a heavy sense of loss because a lot of things we can’t do together anymore and most of the burden around the house falls on her. She’s very understanding and does for me whatever she can. I try to do the same and let her know how much I appreciate what she’s doing. What keeps us going is our deep sense of commitment and our love for each other. We know how to communicate with each other and how to share what is going on without holding back. I think that is the most important part.

      Take care

    • Anonymous
      June 23, 2008 at 11:43 pm

      Norb is right, no one can understand our losses & how sick & weak we feel so much of the time without going through it themselves. I have a daughter your age, so my heart breaks for you. I got sick at age 48, six years ago, & that was bad enough. I don’t know how my husband & I got through those first 3 terrible years, especially when he was still having to work full-time, take care of me, & do everything I had previously done. But we did make it, & now I can actually help out quite a bit. I do walk with AFOs & can’t carry anything (terrible balance), but I can cook again, do the dishes, take care of all of the bills, take care of myself, got my driver’s license back, etc.

      You need someone to vent to, but he cannot understand. I try not to talk about my pain too much or mourn my losses to my husband. That is what this forum is for. I do let him know when I am fatigued, however, as it is pretty hard to hide. But talk & always find ways to keep your love alive…

    • Anonymous
      June 24, 2008 at 12:23 am


      Sometimes we [males] try to solve problems with humor when we don’t know what to do or when we feel so helpless because we can “fix the problem”. I remember how long it took to realize that no matter what I did I couldn’t fix my daughter’s problem. She was deaf and there was nothing I could do to change it. I remember using humor as an “escape” because I didn’t know what else to do. Yes, I finally wised up and realized that some problems can not be immediately fixed, they have to be solved by blood, sweat, tears, and prayers over period of time.

      Amy, we males are sometimes totally clueless about what’s going on. We can easily be scared out of our mind when we find out that we can’t fix it right away. We want to help and make everything alright. That is the way we are wired.

      God has a sense of humor. Why else would He made us male and female?

      Jim C

    • Anonymous
      June 24, 2008 at 3:51 am

      Jim said it well – guys like to fix things, when they can’t fix it they either pretend it doesn’t exist or bury their inability to help in humor. It just doesn’t help my husband cope with my illness to tell him all the details, he already feels badly that he can’t do anything for my pain so I try not to burden him with the knowledge of all the things he can’t fix.

      There is a thread on here somewhere that Kinney started called something like “what do you do when your spouse stops caring”. We had a long discussion on here about sick-spouse burn out and the need for them to take vacations from our illnesses. It should be here close to the top, it wasn’t too long ago, but people had some very good advice and perspective on how overwhelming this can be for our spouses. Their lives and dreams have changed as well – our intention of my husband retiring at 55 and me working until 65 had to be changed. The list of things he can’t do anymore because of my illness is much longer than I want it to be… and so on.

      Finally, just go ahead and cave in on the humor – it’s much less stressful to just go ahead and laugh at the things you can’t change. I get pain, I can’t take pain medications so I just have to suffer, I try to laugh it off by saying things like “please excuse me while I go throw up from the pain for a moment, when I get back you can finish beating me at Gin Rummy.” I don’t know, the humor doesn’t lessen the impact of the illness, we both still know that it’s there, but it makes it a little easier to swallow… a spoonful of honey makes the medicine go down type of thing. ๐Ÿ˜‰

      Come here and vent, we understand and will do whatever we can to support you.

      Take care,


    • Anonymous
      June 24, 2008 at 11:00 am


      I was diagnosed in the middle of my enagement and we almost didn’t get married because of it. We worked through it and have been married for just under 5 years now; but we still stuggle with my illness sometimes. There are a lot of reasons why they can’t understand and get tired or burnt out from having to take care of “extra” things. However, the one thing that seems to stand out the most to me is that my husband (or most anyone else) can understand what it is like when I have a relapse. There is no way to desccribe to someone that has not had the “weakness” that you “just can’t do it”. For awhile my husband would say that I needed to work out or make my muscles stronger so that when I got “weak” it wouldn’t affect me as badly. He was just trying to help but it doesn’t work like that. I have found that this forum is such a great help to hear people who really do understand what you are going through. Thank you for posting this thread; it helps me to know that there are others whose spouses react the same as mine! ๐Ÿ™‚

    • Anonymous
      June 27, 2008 at 5:02 pm

      Thank you all for responding to this thread. It’s really comforting to know that I’m not alone. Like some of you said, you try not to tell your spouses all of the details about your illness…or when you’re feeling really bad one day. But I’m sure you all know, it just gets overwhelming where sometimes you can’t help but talk about it.
      I’ve gotten to where I can’t do everything that I used to do…even household chores. I get really frustrated when I ask my husband to help me out a little bit, he agrees and then it still doesn’t get done. Like yesterday…I just asked him to put a trash can liner in the trash can outside, and take the trash out.(I’m too weak to carry it out to the dumpster). He had all day to do it, but he never did it. So on top of doing everything else I had to do that too. It doesn’t sound like a whole lot, but that’s the point…I just want a little bit of help. We live in a apartment, and outside there are four big steps that I have fallen down many times, so I don’t like to go up or down them unless I absolutely have to. But since he didn’t take the trash out, I had to.
      Christie, my husband also is always on me about working out and just trying to strengthen my legs. He added me on to his 24 hour fitness account several months ago, but I don’t go very much. I keep telling him that it won’t make a difference if I go every day and work out. He just doesn’t understand. I’m soooo frustrated. But I’m sure he is to. We do love each other very much even though I may have not made it sound that way. We do have a good relationship…but with me being so sick, it’s just a lot to work through. Thanks for listening! -Amy-

    • Anonymous
      June 27, 2008 at 6:48 pm

      Amy, hang in there. It is tough when you feel no one understands…I especially can appreciate that.

      I had GBS 25 years ago (anniversary is today actually!) and for a lot of that time I have managed to stay fairly healthy, work full time, look after and raise four kids, help with our farm, and it goes on. But there have been lots of days where putting one foot in front of the other was difficult. Now, I am really experiencing the residuals full blast and I am not used to them being with me everyday. There are days when I just want to curl up and never move but life has to go on. For my family and hubby, it is tough because for 15 or so years (took me 4.5 years to recover and residuals started full time about 2-3 years ago) they saw me getting on with life and I was told I was 100%. Everyone thought that this was a done deal and so it is hard for them to connect how I feel today with what happened so many years ago.

      I also think that back then, they just wanted me well and so they pushed me to the point of exhaustion and I let them. I wouldn’t do that today. Me, I would leave that garbage there until the smell chased my hubby to the can with it. (Okay, so maybe I wouldn’t, but I would be sorrily tempted. ) By not taking it out, is he trying to make a point that you should do it? He may not get how hard it is for you. He needs to come here and read the caregiver thread. He also needs to hear some of our stories. It is hard to understand how this affects us if you don’t get a grasp of the complexities of the syndrome.

      Please take care and try not to over do it. There are lots of us here willing to listen and help where and when we can.

    • Anonymous
      June 28, 2008 at 3:24 am

      I just leave the trash can full, pull out a new bag, put it in the middle of the floor and start filling it. I rarely get more than one extra bag in the middle of the floor before he gets the message. ๐Ÿ˜‰ If he still doesn’t get the message you could always start a new bag in his closet.

    • Anonymous
      June 28, 2008 at 11:52 am

      I would just “let things go”, but I’m such a control and clean freak that I’ve yet to be able to do that. Like, I’ll wait for him to unload the dishwasher, and he’ll just let all of the dirty dishes pile up…I can’t stand it!!! It drives me bonkers!!! And I know that he knows that the dishes are clean because he gets in there to get a clean dish out…but he won’t unload the whole thing. But everytime I start to unload the dishwasher or take out the trash, he sees me and says, ” I’m fixing to do that!!”, and makes me stop. It’s like I have to start the job for him to do it.
      I don’t feel like I ask for a whole lot…I just really want him to pick up after himself. I’m constantly going in behind him and cleaning like he’s a little kid!! I already feel like crap all of the time and have a really hard time walking, I fall down a lot….I have to keep this place clean and I feel like he’s constantly working against me!!I have told him before that I just want him to clean up his own messes and that’s it, and he said okay…but that’s as far as it has gotten. I just need a little help!!!! I know he can’t even understand in the least what I am going through, I don’t expect him to….but just help me a little bit, that’s all I’m asking. I don’t think that’s too much. I know everytime I get put in the hospitol, like a couple of weeks ago for pancreatitis, he says that the house gets so messy…I know, because I’m not there to pick up after him. And when I get home, all I want to do is rest, and instead I have to clean. I know most of you say just leave it…I can’t…I wouldn’t be able to rest in a messy house. That’s my problem though. It’s just hard to keep a house clean I’m sure you all know when you can’t do a lot, but also when you have someone working against you!!! I’m just frustrated right now…. -Amy-

    • Anonymous
      June 28, 2008 at 12:38 pm

      Amy, that is one of the hardest things for us to overcome—the ones we love just don’t get it. I have 3 of those here in my house. I try to do a few tasks everyday along with my shower, because thats all I can do without my body shutting down on me. You really have to listen to your body first then deal with the rest little by little. There is that fine line of limitations and if you don’t listen to your body and stop before crossing that line than it could hinder your recovery by causing a relapse–been there done that a few times. I know how you feel when there is a mess in the kitchen or anywhere else. I feel the same way, but I’m the only one who feels that way in my house. I can ask someone to do the dishes 4 times throughout the day and it still doesn’t get done—I retreat to my bed for a nap or to watch tv, so I don’t have to see the mess.
      Its kinda funny here right now. My hubby has a broken foot and is nonweight bearing still. Well he is on crutches and is finding it rather difficult to get around in some of the rooms in the house because he keeps hittting his stuff that is laying on the floor. Its the same stuff that I have asked him to take care of for quite awhile now that he never got around to doing. Guess what goes around comes around to bite him in his foot.:) I’m getting my point across to him in a rather painful handsoff sort of way. I can’t clean up his stuff because I don’t have enough energy to take care of my daily needs, his hourly needs, plus all the other things I have to do in a day. I have to admit that I get a sense of accomplishment when I see him stumble over his stuff while trying to get some place in the house.;)
      Please listen to your body first, than tackle what you absolutely have to next. Have you tried leaving little sticky notes around with helpful tips on them for your hubby to see. Take care.

    • Anonymous
      June 28, 2008 at 3:07 pm

      Hello Amy

      I am sorry for your husband’s attitute ! he needs some time probably to learn to be tidy in the house …it depend how he was brought up ..maybe everything was done for him till the day he left his home .Maybe doing a schedule for the chores together for each day..not too much …just an idea .
      He seems to be caring Amy….he goes with you to the doctor ….he visits you when you stay in hopsital ? he tries to make you laugh …he is trying with his own way he knows .
      Someone has told you to listen to your body…and that is a good advise ….there is a day that i just do the dishes and cook cause of fatigue …you have to loosen up and don’t be so strick with yourself .Never do more than your body can …you will only cause more fatique .Housework can wait …schedule each day some schores and stay stress free .
      I am married with one daughter 15 1/2 years old and you can emagine how teens are …husband exists but never around . He never spens time with us …when i am in hospital ..never calls or visits …its 50 min with the car …that shurley isnt an excuse .When i ask for help in the house …like take the rubbish down …he would say …I can’t ! my back is killing me …yeah right ! and more excuses .
      Don’t know for how long this will go on …fighting CIDP is a great effort in life and takes a lot of energy to keep up , focusing on good things we have to try and be possitive .

      take care Amy


    • Anonymous
      June 28, 2008 at 7:17 pm

      My heart goes out to you and what you are going through. You say you love him, have a great relationship and you have a lot to work through.
      Keep talking to him and letting him know how your body feels, explain to him that looking good on the outside does not make you feel good on the inside and he must try to help you more so that your body can heal.
      You are both so young to be going through this and it is so hard on both of you when something like this changes your life.
      Bless you both and hope it gets easier for you.

    • Anonymous
      June 28, 2008 at 10:28 pm

      Amy ~ I’m sorry for the “hurt”. It really is part of what most of us live with that have a chronic illness. If a person is basically “healthy” where would he/she get a frame of reference for our life struggle? I don’t have a frame of reference for being a healthy spouse with a chronically ill spouse . . .
      At least when you come here, you know that we understand ๐Ÿ™‚

      There is a great website “But You Don’t Look Sick”. Click on “The Spoon Theory”. I have found it helpful to try to explain to others. Print it out, hand it out!!


      Oh, and each day, remember at least one reason why you fell in love ๐Ÿ˜€

      As Gene would tell you, if he were still here with us, “take care, be well”.

    • Anonymous
      June 29, 2008 at 2:59 pm

      I think that’s it, that I don’t look like a “sick person”. I look fine until I start to walk and I stuble around, and a lot of times have a hard time just putting one foot in front of the other. Most people that when they find out that that I do have chronic illnesses, they just look at me, and don’t believe me.
      I think my husband is scared about what is happening to me and is having a hard time facing it. That is way he jokes I think. He doesn’t want to think of me as being sick, or what am I going to be like a year from now…but he needs to face it so he can support me. It is really nice to know that I can come here and all of you know exactly what I’m talking about and understand my problems. I’m really glad I found this website.
      My husband does treat me very well, and I feel like we have a very good relationship. We just have a lot to work through, and I believe we can make it. We love each other very, very much.
      I am going to check out that website ” But You Don’t Look Sick” , Thank You. -Amy-

    • Anonymous
      June 29, 2008 at 5:14 pm

      HI Amy, I have always found it amusing that when I park in a handicap spot that people look at me to see what I look like, because on my good days, I really do look “normal” and manage to walk straight. If I walk with my cane, they open the doors for me!! Your hubby worrying about you next year–that reminded me of when I went for my 2nd opinion to confirm that I had cidp 8 years ago and one of my questions to the neuro doc was ” Can you estimate how long it will be before I become wheel chair dependent?” Talk about getting your eggs in a row! He answered the only way he could—“No” I have always been in control and organized ,convinced I border on obsessive-compulsive, a Virgo and a nurse, a list maker ( eek !!!)—always preparing for tomorrow, etc. until I got cidp—that sure does change everything, doesn’t it? No more control, forget about tomorrow and just get through today…and as long as these legs will hold me, I will keep on walkin–I may not be in control anymore but I have developed a fierce will to survive and take each day at a time and enjoy it the best I can and like all the others, be hopeful for a cure. Don’t know if this helped you but just wanted to give you my opinion and let you know I care about you just like everyone else does.:) ๐Ÿ™‚ ๐Ÿ™‚ Emma