Poll The Family-Get-Together Poll: Are They Worth It?

[Cort]

Nothing caused me more emotional distress in the first ten for fifteen (or twenty??) years of ME/CFS than going to family gatherings. I looked forward to them, was anxious about them and sometimes emerged from them shattered and in tears. It was the only situation that could bring me to tears. My place had changed. I was no longer a leader - no longer the funny one - I was a mess. At one one of my brothers told me to my face something to the effect "You're no longer "the man" anymore. That stung...

On the other hand family is important. I love my family....sometimes I have good times. Family get togethers are a tough gig!

 

[San Diego]

It depends on who is attending. We all have a few of those in our families - you know, the ones with all the medical advice, the underhanded comments, and the non-stop questions.

I've learned to stop pretending that I'm well, which helps. I've even learned to use my wheelchair effectively so I can last longer and not be expected to work the room like I did so happily when I was healthy. Still, I miss that bubbly me and often feel embarassed of my impaired conversational skills. Yeah, I lost my place, too, and have found it difficult to find a new one.

Fortunately, my siblings are both enormously supportive and I jump at the chance to spend time with either. Now, if I can just get thru an upcoming wedding without a relapse I'll consider it a major victory!

 

[Cort]

A wrenching adjustment to be sure - even in my family which is supportive...Good luck at the wedding!

 

[Who Me?]

There's going to be a big party for my aunt's 100th birthday in October.

Even if I could survive the 2 hour ride, after sitting up and talking for an hour, I would completely "check out" and turn into a zombie.

I cant cant even imagine what the next few days/weeks would be like.

Not even a consideration.

This is my aunt at her 99th. Wasn't there either

 

[Katie]

I just came back from a lunch with my elderly mother. It takes an hour to drive there and another back plus time for chit chat and to eat. She doesn't quite get what I'm going through, just complains that she hasn't seen me in...
I am completely drained and will feel so for several days. I only see her every few months so I grin and bear it. Sounds pathetic I know.
My specialist's app'ts are an hour away also. I usually stay over-night at a friends place but by the time I return home I'm out for the count for a couple of weeks. However, my kids and grandkids live the same hour away and I visit them also when in town to see specialists. This gives me lots of pleasure to see them (kids/grandkids) and yes I have the same exhaustion by the time I'm home but I get quality time with them and they make me laugh so I feel uplifted and that part makes all the difference to me, tired or not.

 

[Mary Anne]

The family gatherings I've been able to attend over the past 15 years have been enjoyable but far and few between. I used to be able to socialize a bit more in the middle years of illness but my health has been declining over the past two years and the vertigo is more or less with me all the time, so any travel is a nightmare. I used to dread the invitations because I would experience the back-and-forth dilemma of whether I should go and risk a long recovery phase or say no and feel sad for days because I didn't take the chance. I'm learning to live with the sadness/regret because the sickness I feel from any travel or just sitting and being part of a group conversation is too painful and exhausting now.

 

[MollyO]

My awesome and supportive siblings always make it worth it for me, but I can't say the same for larger gatherings or even outings with my friends. My friends are also very supportive but still have a hard time understanding the major differences I've had to make, especially only having an alcoholic drink once in a while versus being able to dance until it's closing time. I also found even my best friend to be surprised when I told her that just having to be "social", meaning, participating in conversations is physically exhausting (and she's the poor soul who had to wheel me around and carry me from the bath to my bed). I am lucky to be surrounded by loving and supportive people, but understanding the extent of the fatigue and the repercussions for activity, is still beyond most of them. I get this, I had absolutely no understanding of the word "fatigue" until I became chronically ill.

 

[Cort]

My awesome and supportive siblings always make it worth it for me, but I can't say the same for larger gatherings or even outings with my friends. My friends are also very supportive but still have a hard time understanding the major differences I've had to make, especially only having an alcoholic drink once in a while versus being able to dance until it's closing time. I also found even my best friend to be surprised when I told her that just having to be "social", meaning, participating in conversations is physically exhausting (and she's the poor soul who had to wheel me around and carry me from the bath to my bed). I am lucky to be surrounded by loving and supportive people, but understanding the extent of the fatigue and the repercussions for activity, is still beyond most of them. I get this, I had absolutely no understanding of the word "fatigue" until I became chronically ill.

"I am lucky to be surrounded by loving and supportive people, but understanding the extent of the fatigue and the repercussions for activity, is still beyond most of them"

It's just impossible to understand until you experience it. For myself I have to allow myself to be just the way I am - and accept that -it's still not easy!

 

[Cort]

View attachment 220 There's going to be a big party for my aunt's 100th birthday in October.

Even if I could survive the 2 hour ride, after sitting up and talking for an hour, I would completely "check out" and turn into a zombie.

I cant cant even imagine what the next few days/weeks would be like.

Not even a consideration.

This is my aunt at her 99th. Wasn't there either

A hundred years old! Wow....

I hate that zombie feeling - particularly when I'm surrounded by people chatting away...How isolating that is!

 

[kerry d]

Even though stressful I enjoy family get togethers more now and yes I still crash afterwards for a couple of weeks. My greatest problem has been getting my young adult children to accept that my illness is not just psychological and I can't just get up and go to see them and my little grandchildren, or have them here at my house frequently. They have been so bitterly disappointed and hurt in part I know because they lost their father a few years ago at 61yrs old. It has seemed as though they've expected me to fill the role of 2 parents/grandparents now and there's no way I've been able to do that. Gradually with time their grief has eased and I have started to see some acceptance of my limitations. I understand now too that I've contributed to their lack of understanding by always pushing myself to play with the little grandchildren at our family occasions. I must learn to have a balance of a little play and then sit quietly and just watch.

 

[julie dawn]

i'm ok for like an hour ...then anything more will be detrimental.

 

[Ria Roegiers]

"I am lucky to be surrounded by loving and supportive people, but understanding the extent of the fatigue and the repercussions for activity, is still beyond most of them"

It's just impossible to understand until you experience it. For myself I have to allow myself to be just the way I am - and accept that -it's still not easy!

I think this disease is unfortunately harder on men socially.
I do not expect people (and certainly not my family) to understand it but acknowledging it and showing compassion go a long way. When my dad was still alive, that is just what he did and it meant the world to me, still does.

 

[Erika Edmondstone]

Depends on who's there and how many. I can't cope with two people talking at the same time, or with family members "with history". However, that's the price I have to pay for seeing my much loved mother. I ensure I take enough time off to rest when I get home - it's a 1900km round trip, so planning and pacing is critical.

 

[Mwasi]

I read all the post on the subject and I was surprise to see how "we" live similar feelings and situation!
I don't have anymore contacts with my parents and very few with brother and sister and for the last one, it's on skype.

But...I am a mother of 4 beautiful daughters who come home with husband and kids.
Maybe it's the path of my specific life, but I raised kids alone: I realize that I consider myself (and it's probably how my daughters see myself) like a "key person" of the family. Since ME/CFS is more and more present in my life, I have to reconsider my role in the family and mostly, to accept that I cannot be anymore THE key person that can do all in the house, taking care of guests, serve food etc. It's hard for me to accept that and even if gatherings are not so frequent, I feel this acceptation is not profound enough from my parts. And of course, even if I meditate on zenitude, I feel stress and anticipation shaking my mind and body many days before the gathering. I really hate to feel like this, let me tell you. I do not recognize myself to be honest!

I have 4 grand children aged of 8, 5, 4 and 10 months ansd 4 daughters. I consider my mother and grand mother roles very important to me BUT...it's hard for me to be totally present to them for long hours and it's not anymore possible to be "in charge" and taking care of grand child, for example. After one hour (and they are quiet kids!), I just need to be in my bedroom and try to chill down brain, fatigue and stress. Well, I hope people can understand what I write as I am Francophone and also loosing English slowly.

Thank you Cort for your very pertinent subject/question!


Mwasi

 

[Tami]

I read all the post on the subject and I was surprise to see how "we" live similar feelings and situation!
I don't have anymore contacts with my parents and very few with brother and sister and for the last one, it's on skype.

But...I am a mother of 4 beautiful daughters who come home with husband and kids.
Maybe it's the path of my specific life, but I raised kids alone: I realize that I consider myself (and it's probably how my daughters see myself) like a "key person" of the family. Since ME/CFS is more and more present in my life, I have to reconsider my role in the family and mostly, to accept that I cannot be anymore THE key person that can do all in the house, taking care of guests, serve food etc. It's hard for me to accept that and even if gatherings are not so frequent, I feel this acceptation is not profound enough from my parts. And of course, even if I meditate on zenitude, I feel stress and anticipation shaking my mind and body many days before the gathering. I really hate to feel like this, let me tell you. I do not recognize myself to be honest!

I have 4 grand children aged of 8, 5, 4 and 10 months ansd 4 daughters. I consider my mother and grand mother roles very important to me BUT...it's hard for me to be totally present to them for long hours and it's not anymore possible to be "in charge" and taking care of grand child, for example. After one hour (and they are quiet kids!), I just need to be in my bedroom and try to chill down brain, fatigue and stress. Well, I hope people can understand what I write as I am Francophone and also loosing English slowly.

Thank you Cort for your very pertinent subject/question!


Mwasi

This is the most difficult for me; my grown children and beautiful grandchildren. There's so much I want to do with them. When they're here, or I'm visiting I try my best to be "normal." Always crash after, but it's worth it to me.

I rarely attend extended family get togethers--in-laws, sisters, aunts and uncles, etc. The post about using a wheelchair was a good one. Most of them don't know I use a wheelchair on occasion. Maybe a visual would help.
I find people have the hardest time understanding that I have a definite limit to listening and to talking. I get comments like, "Well, just sit here and we'll talk." or "You just listen."

I grieve over no longer being able to host family get-togethers (in my old life I enjoyed that); have come to the point of accepting extended family gatherings aren't for me--unless I have a strict plan in place, along with a place to rest when I need to; and I suffer the consequences of visits with our kids and grand-kids.

Thanks for all the good comments. Great new forum!

 

[VALERIE]

I find if I'm careful I do okay with the people I really care about and who understand me. Those who have been difficult in the past are still difficult now. I have also used a wheelchair for outings, and the visual is helpful. If I travel an hour or more from home, I try to build in some resting time in my car before presenting myself. I also have worked out resting places at people's homes when I visit. If I do my best to pace, I can cope pretty well, but the emotional aspect of seeing loved ones can be overwhelming. I cry, and it's okay.

Valerie

 

[Cort]

Even though stressful I enjoy family get togethers more now and yes I still crash afterwards for a couple of weeks. My greatest problem has been getting my young adult children to accept that my illness is not just psychological and I can't just get up and go to see them and my little grandchildren, or have them here at my house frequently. They have been so bitterly disappointed and hurt in part I know because they lost their father a few years ago at 61yrs old. It has seemed as though they've expected me to fill the role of 2 parents/grandparents now and there's no way I've been able to do that. Gradually with time their grief has eased and I have started to see some acceptance of my limitations. I understand now too that I've contributed to their lack of understanding by always pushing myself to play with the little grandchildren at our family occasions. I must learn to have a balance of a little play and then sit quietly and just watch.

I wonder if they feel in some way rejected? I wonder if that's actually common in families. That idea comes to us pretty easily - perhaps more easily than "Mom's sick so she can't come over"....

Do they know that you really want to come over - in fact you want to get to know your grandkids so much that you push yourself into a crash by playing with them?

 

[Cort]

I read all the post on the subject and I was surprise to see how "we" live similar feelings and situation!
I don't have anymore contacts with my parents and very few with brother and sister and for the last one, it's on skype.

But...I am a mother of 4 beautiful daughters who come home with husband and kids.
Maybe it's the path of my specific life, but I raised kids alone: I realize that I consider myself (and it's probably how my daughters see myself) like a "key person" of the family. Since ME/CFS is more and more present in my life, I have to reconsider my role in the family and mostly, to accept that I cannot be anymore THE key person that can do all in the house, taking care of guests, serve food etc. It's hard for me to accept that and even if gatherings are not so frequent, I feel this acceptation is not profound enough from my parts. And of course, even if I meditate on zenitude, I feel stress and anticipation shaking my mind and body many days before the gathering. I really hate to feel like this, let me tell you. I do not recognize myself to be honest!

I have 4 grand children aged of 8, 5, 4 and 10 months ansd 4 daughters. I consider my mother and grand mother roles very important to me BUT...it's hard for me to be totally present to them for long hours and it's not anymore possible to be "in charge" and taking care of grand child, for example. After one hour (and they are quiet kids!), I just need to be in my bedroom and try to chill down brain, fatigue and stress. Well, I hope people can understand what I write as I am Francophone and also loosing English slowly.

Thank you Cort for your very pertinent subject/question!


Mwasi

Came across loud and clear Mwasi..

You were the rock - you were the hub around which the family gathered. I imagine they're feeling a bit adrift...and of course you are as well.

Toni Bernhard writes beautifully on how she had to adjust to not being able to be there for her family; it was one of the most difficult things for her.

I would just make sure that they know how much you would love to be there for them...

 

[Lois d'Annunzio]

I love when my family (17) all gets together for the holidays. The ages are 6 thru 77. Usually there are several outings to museums, theater or concerts but I usually stay home since I go into sensory overload very quickly. Of course, if there are prepaid tickets I feel awful when I have to cancel. At the dinner table there is lots of talk and laughter which is wonderful but more than 20 minutes I go into a crash. What kind of disease is this that punishes patients for having lots of laughs? I really have to pace myself to get through the holidays. Fortunately, my family understands "my situation" and I love them for that.

 

[kerry d]

I wonder if they feel in some way rejected? I wonder if that's actually common in families. That idea comes to us pretty easily - perhaps more easily than "Mom's sick so she can't come over"....

Do they know that you really want to come over - in fact you want to get to know your grandkids so much that you push yourself into a crash by playing with them?

Thank you so much Cort for understanding me. You're right. I know they feel rejected and they need to grieve for 'losing' me too as the mother and grandma they expected to have. I have told them many many times how much I want to be with them more but they cannot understand what a 'crash' is, of course. However, over time and one by one they're beginning to accept the 'new' me.