I thought they understood, but after all these years they really don't.
By youdontsay
@youdontsay (3497)
United States
July 7, 2007 8:47pm CST
I've been with my partner for nearly twenty years and half of those years I've been battling fibromyalgia and chronic fatigue. My partner has been very supportive and I thought they understood how chronic fatigue affected me and what affected the fatigue. But this week I had to face that that understanding isn't as complete as i thought.
We were visiting our daughter and her family in another state. The grandkids are 4 and 6. My fatigue has been really bad for several weeks now and I questions whether I should make the trip. But I wanted to see them so we went.
While we were there I was barely functional, having to take rests frequently, sitting on the edges of conversations and watching what the kids were doing, but not participating much at all. I just didn't have the energy. And being around the kids, who are normal and mostly well behaved, really drained me.
My partner strongly suggested that I spend more time participating with [bonding with] the kids, that they needed to know me better.
I didn't have it in me to do more than be sitting upright most of the time. There was no way I was going to be able to play games with them or play in the pool with them, which is all they wanted to do.
I was so hurt that my partner, who I believed really understood my illness, could see me as choosing to fail at being a good grandparent.
Should I have pushed to do more and made myself really worse? What should I have done?
5 people like this
10 responses
@Aurone (4755)
• United States
8 Jul 07
My husband has bipolar disorder and pain in his arms and legs due to depression. These limit what he can and cannot do. He also sleeps a lot because of these conditions. Sometimes, although we understand these conditions in our partners, we can never know what it is really like. We forget and we get frustrated because they cannot do everything we can do or everything we want them to do and we are hurt by their limits. Its not fair, but I think we cannot help it.
I think you did everything you could do and perhaps you should bring this up with your partner and remind them of your limitations and that you weren't being a bad grandparent but that you were ill. Don't accuse them of anything and try not to be angry or hurt when you bring it up. Maybe they just need reminding of what they know.
4 people like this
@youdontsay (3497)
• United States
8 Jul 07
Thank you. I know they didn't mean to hurt me but just trying to be helpful. I just felt so discouraged that there didn't seem to be anyone who really understood that I was doing the best I could.
We will talk about it when I'm not feeling so bad that my emotions are tender.
1 person likes this
@natrlvr2 (383)
• United States
8 Jul 07
I always have to push myself and then suffer afterwards.(single mom) I have learned over the years, 99.9% of everyone that knows me,truly does not understand all my ailments.I am disabled for a reason.
My best freind and my mom,do understnad. They both are in chronic pain/fatigue too.I was almost thrilled when my friend was diagnosed with fibromyalgia.NOW SHE UNDERSTANDS ME!
2 people like this
@youdontsay (3497)
• United States
8 Jul 07
I can understand the mixture of feelings of a friend having your diagnosis. On the one hand we don't want anyone to have to suffer what we do and on the other we want people around us who understand our condition. And "normal" people just don't get it.
If I'm fatigued, a good nights sleep will fix me up! Sure. I wish.
@Katlady2 (9904)
• United States
12 Jul 07
Hon, you have to do what is healthy for YOU, not what will make someone else happy. By no means should you run yourself into the ground just because your partner, or anyone else, thinks that you aren't doing enough. Pardon my bluntness, but I think your partner is definitely in the wrong and should get a clue about how this is affecting you both physically and emotionally. Maybe it's time to sit down with your partner and discuss how you are feeling about everything. That way at least you will have put it out in the open and the ball will be in your partner's court, so to speak. I hope this all works out for you hon. Hugs to you my friend.
1 person likes this
@youdontsay (3497)
• United States
12 Jul 07
Thank you for your support. I really appreciate it.
I'm still dragging around, but expect to be feeling better for a few days at least. Every time I get a B12 shot I feel better for a few days. Doctor gave me one yesterday, so I'm starting to feel better.
Now I have to remember not to push myself while feeling better and lose all the good effects of the shot! :-)
@beauty_ph (2749)
• Philippines
8 Jul 07
My friend I think your partner is overwhelmed towards grandparenting. He forgets about your case. I know that sometimes being overwhelmed we tend to forget things.
Just communicate with your partner and tell him you have those fatigues that can't permit to participate in playing with your grandchildren. I am sure he will be reminded and not act as demanding as he was.
Playing with the kids can help get away from stress. I do this with my niece often after work. I would visit them in my parents house and the busy tiring work is gone. And I think this happened to your partner too.
I do hope that everything will be fine for you and your partner. God bless!
@youdontsay (3497)
• United States
8 Jul 07
Thanks. I hope to be feeling better, too. One thing consoling about the disorder is that there are periods of near normality eventually.
@sid556 (30959)
• United States
8 Jul 07
It is very difficult for people to understand that which they themselves have not experienced. It is especially hard to understand those disorders that can not be seen. I am sure that your partner is trying to be understanding and it sounds as if he is for the most part. No, you should not have pushed yourself and made yourself worse. Just be honest with everyone about your condition. Make it clear that you would like to be more active but simply can not. Even little children are capable of understanding that. let your grandchildren know how much you love them by bonding in different ways. Sitting and reading with them and chatting can go a long ways.
2 people like this
@youdontsay (3497)
• United States
8 Jul 07
Thanks. Reading with them and chatting is what I usually am able to do. When the fatigue is extreme that is even challenging.
The kids are good, not at all demanding of me. They are kids, though, and I'd love to be able to enjoy them more.
1 person likes this
@sibiology (47)
• United States
8 Jul 07
My boyfriend tries as hard as he can to be all around supportive - but I try to remember that this is hard on him as well. He has to deal with me being tired and achy with no real cause in site. You never know when it is going to hit - neither does your partner. Being supportive is a drain on them just as much as being tired is a drain on you. My boyfriend gets so frustrated with me at times - but I try to remember (and it isn't always easy) that he loves me and it hurts him to watch me go through this when he can't help me fix it. I don't even understand most of the time - so I try not to (yes, I try very hard) take it personally when he is frustrated. Loving someone who is in pain is hard on them as much as it is hard on us - just in a different way. I think you can't push yourself harder than you can go - maybe next time just tell your partner that the trip alone was hard on you and if that doesn't do it then talk to the grandkids - I bet they would stay inside for a nice game of cards, which can be played on the bed :) I hope things get better. I will keep you in my thoughts :)
1 person likes this
@youdontsay (3497)
• United States
9 Jul 07
Thank you for your understanding of both of us!
You are right. It is hard on everyone involved. Blankety-blank disorder!
@youdontsay (3497)
• United States
10 Jul 07
Thank you. Hopefully some day there will be adequate treatment for us.
@craftcatcher (3699)
• United States
8 Jul 07
It's so hard to understand all the way around. I too suffer with FM and have horrible bouts of total exhaustion just walking from the couch to the bathroom and back. I don't always understand it myself and it's darned hard to explain it to others. How do you explain to someone that walking 20 ft. sometimes feels like you just ran 20 miles? or that riding in a car for a few hours makes you feel like someone beat you with a baseball bat?
My husband is wonderful but also has times when he gets frustrated with me. Usually I just look at him and say "Do you think I LIKE living like this?"
I truely understand his frustration is not really with me but the problem, and it's perfectly normal for it to rear it's ugly head once in a while. No matter how much they try to understand there is no way anyone can genuinely understand it unless they live it. Bless their little hearts for trying their best most of the time though.
If you could have done more you would have and I'm sure deep down your partner knows that as well. It was just a temporary human frustration. As much as we need our partner's understanding sometimes they need our understanding also, it's not an easy thing for any of us to live with.
Take care hon.
1 person likes this
@youdontsay (3497)
• United States
8 Jul 07
Thanks. You are right. I was just so surprised at the remark and I guess it hit my own nerve about feeling guilty because I can't be "fully functional".
1 person likes this
@gr8life (6251)
• Malaysia
9 Jul 07
Hello youdontsay,
I fully understand your feeling but sometimes, maybe those people around you and close to you, just forget how bad your situation is. It doesn't mean that they don't understand you especially your partner who has been with you for almost twenty years. Maybe he was happy playing with the grandkids and thinking of how good it will be if you could join them but maybe..just maybe, he forgot about your situation.
You don't have to make it hard for yourself. If you can't do it, just forget it. Please don't try to make others happy by making yourself suffer more. I think your partner will realize that it was a mistake for judging you that way. It won't make you a bad grandparent if you can't join them to play or to do something which is not an easy task for you anymore. Just show them and shower them with your love and that will be a great remembrance for them! *smile*
1 person likes this
@Perspectives (7131)
• Canada
10 Jul 07
My hubby and I have had health challenges at different times. When one of us wants to do something and the other is not up for it we try to be there for each other...but sometimes are not as sensitive as we'd like to be. I think couples can be on different pages for whatever the reason and it is okay..upon occasion.
Maybe your partner's need to have you participate had to do more with wanting the kids to know you...than forgetting about your conditon. Sometimes awareness get pushed into the background within the immediacy of the moment.
I am sure if you ask him to sit down with you when you are not feeling so 'raw' about what happened you will be able to find some common ground. What my hubby and I have learned is that we do not have to agree...but just give each other a chance to voice how we feel. I am sure if you explain that you were as disappointed as he was that your fibro got in the way of quality time with the grandkids he will be able to see things from your perspective, give you a big reasurring hug and re-connect again. I sure hope so anyway.
My thoughts are with you...I know fibro is a challanging conditon to manage.
@youdontsay (3497)
• United States
10 Jul 07
Thank you. You are right, of course. I think it touched a raw place I already had created by my own disappointment and guilty feelings.
