My Boyfriend doesn’t understand….ugh

One thing you are not getting enough sleep at night. I think most people with GBS/CIDP need more then 6 hours of sleep about 8 to 10. I don’t always get 8 hours of sleep every night during the week and I sometimes feel it.

I would tell him if your not interested in reading the stuff on GBS and how it makes a person tired and what not then your not interested in me.
Or in a jokingly manners when he tells you it time to get moving you say no it is your time to get moving out of this house so I can get some sleep.

It is not just men lots of people think that way family and coworkers don’t realize what we go through.

Good luck in convincing him. Also try to get to be earlier at night if you can no matter what he may say.

Sue

Hi Sherry.
I hurt for you as you are doing the best you can and from what I read you are doing it alone. This is not right. Your B/F is shelfish as he isn’t intrested in your health and all he cares about is himself. The caregiver is the greatest support we have and they do so much to help us to recover from the hell we have been through.
In your case all he is doing is abuseing you by not careing to know what you have and are going through. this in its self can set you back. make your healing slower. He should be worryed more about you than his turkey. If you were my daughter he would be shown what the road looks like and told it is one way for him. keep going. You are going to find that you will get more love from the people here than from your B/F and we DO CARE ABOUT YOU.
You are in my prayers Your friend ( Steve)

Shoot I was a constuction worker and was in good shape prior GBS, I go to bed now around nine or ten get up at around seven. I still take a couple hour nap during the day. It hard for other people to understand but the people in this forum do. My prayers are with you in this.

Joseph

I had a mild cause of GBS and I still need LOTS of sleep 8-10 hours. It sounds like that’s the common experience and probably what you need too. I’ve found interrrupted sleep isn’t as good either, so then I need more. I like one member’s humorous answers for your boyfriend’s behavior. If he’s really the great guy you believe him to be, then sit him down and tell him it’s important to you that he learn about GBS and the life altering effect it has on you. If after that he won’t do it, then you can question the depth of his devotion, seriously. It’s going to be hard for him to understand since he didn’t go through it too, but if he makes a good faith effort to learn and understand, AND improve his behavior about it, then you’ve got a relationship that’s workable. Good luck and good communicating.

It takes a special person to understand and unfortunateley there are not alot of special people in the world. Kevin’s father, my charming husband doesn’t even get it. He saw from the begining to present, every month at treatment! I guess what I am saying is if he means enough to you, you will have to live with how he feels. If you have tried everything to get him involved with understanding the situation (reading posts) and he refuses, you have to decide what is more important. Not everyone is equiped to be understanding and compassionate, we can’t fault people for something they are not capable of doing, being understanding. He could be fearful of the info, or as mentioned he could be selfish. I guess it all depends on what you get out of the relationship in other aspects. Good luck, human nature is a curious aspect.
Dawn Kevies mom

I agree with the others that you’re probably not getting enough sleep if six hours is your normal “down time” every night. I would love to be able to stay up all the way until midnight! I am usually out by 9:00, but always by 9:30 whether I want to or not. I just can’t keep my eyes open much later. Then I’m always asleep until 7:00 when the kids wake up. I definitely need 8-10 hours of sleep a night, and even then I still often take a short refresher nap (maybe 30 minutes) most afternoons when the opportunity arises.

So my advice to you would be to see if you could move your bedtime to an earlier time, which might take care of the problem of needing to go back to sleep in the morning. Not that this addresses the insensitivity issue where your boyfriend is concerned, but that’s a whole other can of worms!

Hi Sherry,

First, I’ve got to say I so admire you for even having a b/f! I tried once in the past 11 years and really picked the wrong guy. So of course, now I am afraid. Second, last Sunday I had dinner with my siblings and we almost got into an argument (we are so non-confrontational – dysfunctional) about my situation and they didn’t want to read the material either. That’s one thing about my parents who have now passed – they were there and they knew. I feel grateful for a few friends that I have from my watering hole that do understand and have asked to read material on GBS.

I am in therapy now and one of my goals is to have a relationship with a man some day. I am selfish and spoiling myself with sleeping 8 to 10 hours a night, but I figured out that if I don’t do it no one will.

Good luck and don’t forget we all are always here for each other!

Hi Chrissy

If I could say one thing – none of you are selfish for wanting 8-10 hours of sleep a night! We have gotten ourselves into a place as a society where we think that we should not sleep more than 6 hours (so much to get done….!). We forget that people actually NEED 8 hours to function effectively.

This disease is incidious. Alot of the time we don’t really look “ill” (if you can get beyond the transportation assistance!:rolleyes: ) so people – even your nearest and dearest don’t see it. All they see is someone who spends lots of time in bed, and can’t do things with them, or for them. It makes me very frustrated and sometimes I feel like they don’t care – but that isn’t really right – they just don’t necessarily see “sick”. (and I don’t like that term, either – I just can’t think of another one that encapsulates the issue.)

My husband is outstanding – I have had CIDP for close to 12 years now; and he supports me to no end; but even he has his times where I know he is frustrated that I can’t do things – I back away from socialising because it wears me out. Our friends tend to wait for me to initiate things now – they invite us, but might only get him!

All I can say is that extra doses of patience and repeated kind or humorous reminders may be required. Our relationships are hard enough without the extra demands that a chronic illness puts on it. Be gentle with each other. And sleep! I know that without it, I am pretty useless – so I imagine you all feel the same.

Take care

Debs

I am 6 years out & fatigue continues to be my biggest issue. I think I have gotten over the physical disability part; the residuals I have been left with, like needing AFOs to walk & needing a wheelchair for long distances. But feeling tired all of the time can be so frustrating! I try to get 10 hours of sleep a day, if I can’t get it in the evening, then I must take a two hour nap in the afternoon. Even so, I rarely can do much in the evening but veg out in front of the TV. I am so glad my husband gets it, he remembers the first 3 years when all I could do was sit in a power chair or lie in bed, having to have everyone do virtually everything for me…

I really feel for those of you looking to date or in the process of dating. How does one explain the hardest residual of fatigue to someone, expecially if you look so “normal.” It takes a very special person to want to read up on the material about how one has to battle fatigue, I wish you luck in this respect…
Pam

HI,
Good luck getting people to understand why you need to rest, I have not been able to do so. The only one that understands is my wife who is really a great help. It might help if you pull up some literature and print it off relating to GBS/CIDP and make him read it. I have people make comments all the time like you need to get more exercise( I am in a wheelchair), and if you would try to walk more your legs would get stronger. I have taken several bad falls trying to do that very thing. I have had CIDP for almost 10 years and I just chalk their comments up to stupidity.
Hang IN there,
Larry

I’m with you.

I still can get lots done during a day, but find in the evening, I’m drained. Even days that I don’t get my walk in, I doze off between 9 and 10 if I sit still. I used to stay up till 2 or 3 and get up to head to work at 6. Those days seem to be long over.

My friends and family also have trouble understanding. The fact that 1 day I can walk 2 miles and come home and mow, but the next, I am dozing all evening. Hang in there, and keep on keeping on.

It is hard for others to understand. I am told I should ignore it and push myself. How? You can only do so much…heck even sitting for a long time can be taxing….before your body MAKES you rest. Some days I make it thru the day and am over tired so I cant sleep at night. Other days, I feel as if I could sleep the day away. Naps make me feel lazy, but I do what I have to do. If anyone came over and insisted I get up I would probably deck them. At the very least I would ask them to leave and I would call them later. I have found that no matter what I do, I run out of steam around 4 pm. I feel most guilty about this if I havent done anything all day and there is “no reason” for it. I do wish there was a way to get people to understand but I dont think there is.

It is real difficult for others who are not afflicted to feel empathy, especially if they are a narcissistic personality type. Most who do not suffer from fatigue ether think we are lazy or just need more exercise to strengthen those muscles.

If you care enough about this person, then perhaps you could overlook his ability to understand via empathy. That said, he must at least understand the intellectual aspects of fatigue. I’d suggest a few exercises to help him understand. First, point him to this thread. Then, ask him to wear a back pack with 60-70 pounds for two days..even sleep with it, perhaps a full weekend- make it an action filled weekend like a good walk in the park or shopping for food, etc. Then, he can take the back pack off Monday morning and go to work! This may yield an interesting conversation Monday evening.

Some folks will never understand. Most seem to understand my depression better than they do my fatigue, so I am sure they forgive me for the transgression of being down most of the time. It is a two way street… just that GBS felt like I was hit by both a northbound and a southbound car at the same time…POW! You know, I feel no empathy for a child molester, or sympathy for that matter, but I do think such individuals are mentally ill. Mind you ,we should all experience consequences for our actions, but I recognize GBSers may suffer from a sense of unmanageability like those suffering from alcoholism, which I may never fully understand. At times, I feel powerless to convey my needs or to make favorable change my lifestyle and my fatigue creates in me a sense of unmanageability.

I try to remain sensitive to other’s needs even when I cannot fully comprehend them. A few family members have no conception of what it means to feel fatigue, but I know they love me just the same. In some of my relationships I have had to lower my expectations simply because if I make my need for them to understand as a prerequisite I will alienate them despite knowing they love me. Instead, I feel appreciative of their love even if they perceive me as lazy person.

As for the sleep, well, I have had sleep apnea before I got sick ten years ago- had a septoplasty, uvulaectomy, etc. Now, I use the wonderful c-pap machine and Trazadone to help me remain asleep. Come to think of it, when I am working I have a phone headset on, and then come home to game using headphones and a mic as a part of the fun, then off to bed wearing a harness. LOL I should just get an operation mounting this gear to my head! Never the less, like you I am lucky to get 6 hrs in an evening. Don’t it suck? LOL. Then again, I am so much better off than many who visit this forum I give thanks for the six hrs.

Sherry/Stormy
I lost all my friends of 30 years when I got sick. Luckily I had my therapist (who was helping me get over my mother’s death) continue over sessions over the phone. What I learned is that THey were damaged people. My best friend became Passive Aggressive – yes she would get my groceries every other week and then “forget” half the order at the store. “Oh, do you want me to go back and get it?” Unbelievable. I had not experienced passive aggressive people so I did not see it. Do you think your boyfriend might be doing this when he wakes you up?? Perhaps there is resentment there on his part that you are not able to do all the things HE wants to do. People who do this are selfish – they love you, but NOT ENOUGH. An illness like we have brings out the best or the worst in people. That was a blessing for me – even though I lost all my friends and relatives, it gave me time to get them off of my CD’s and bank account!
I am probably wrong on all this since I am not walking a mile in your moccasins…..but if any of it resonates, then it was worth suggesting …..just remember the Key is ENOUGH…….if he loved you enough, would he treat you the way he is……… (I hope he is)

Rocker & Carolyn,

You two are great at how you responded. Such wisdom. And I thank you.