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

[Cort]

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.

It's an amazing, amazing disease...I think the reason people discard it is that it is soooo different from others...Too much good excitement can be as bad as bad stimulation. It's all about stimulation it sounds like.

 

[madie]

I don't even talk with siblings on the phone; they think it's all in my head. But when my kids come visit with boyfriends/girlfriends, it's totally great. They know visiting them is out of the question (45 minutes or 4 hours away), and they're always welcome here.

My kids grew up around my illness and are very self-sufficient. Everybody knows I'm not cleaning up or shopping or cooking. If it gets too noisy I sit on my couch in the next room and listen and watch through the glass doors, to everybody laughing and making music.

 

[Patty May]

Family get togethers are the best! I try to reserve my energy for a week or more before gathering, and most everyone understands my limitations. If they don't understand by now (after 29 years) they won't ever. The few that don't "believe" in ME/CFS and Fibromyalgia aren't close, and don't spoil my fun! Having family that loves and supports you is priceless, I wish for everyone to have that. If not you can make your own "family" of friends, caregivers or others that a person feels close to. I think it's wrong to give in to the isolation that pain and fatigue seem to facilitate. It makes your world too small.

 

[Gerry Lavery]

If I push through and make the decision it is important to me to be with my family I choose to go knowing I will pay a price for it.
So much time is spent around getting ready for a family gathering. I can no longer have them as I used to.
I love to go to my grandkids sports events. That depends on weather but it is important to me..My family will say it's ok if you don't make it. well it is not ok with me. I have given up enough.

 

[Seeksassy]

Family get togethers are the best! I try to reserve my energy for a week or more before gathering, and most everyone understands my limitations. If they don't understand by now (after 29 years) they won't ever. The few that don't "believe" in ME/CFS and Fibromyalgia aren't close, and don't spoil my fun! Having family that loves and supports you is priceless, I wish for everyone to have that. If not you can make your own "family" of friends, caregivers or others that a person feels close to. I think it's wrong to give in to the isolation that pain and fatigue seem to facilitate. It makes your world too small.

I, too, have to rest up for a week or so before family events, and even so still have to cancel sometimes. But if I can make it it's absolutely worth the crash afterwards! After years of trying to present myself as still capable I've learned to quit pretending I'm ok and just take in what I can. I can no longer host after years of being the go-to house for holidays, which is sad, but I now take what I can get. Sometimes I think I was the last one in my family to accept my new reality.

 

[Carrie Conley]

Family is everything to me. We are all so busy these days and spread all over the place that we can not get together like we use to. I miss our get togethers. My family is my rock and have been there for me always. They are even more so since diagnosed with Fibro.

 

[tiffyd]

Spending time with family is so important to me, however, I have experienced most of the struggles that other folks have posted with family gatherings. I have been disabled by CFS and FM 3 years now, after being a high achieving and fun-loving person up to age 50. It has been such a difficult journey and daily battle, as you all understand. So when certain family members clearly make nasty and hurtful remarks when I asked for some minor considerations when planning family events, it causes me tremendous emotional, then physical, distress, upsetting my fragile health even more! I wanted to have a birthday luncheon for our Mom at her favorite restaurant and thought that would work well for all involved, until one family member informed me that the luncheon would be at 3 PM. I asked if we could do it earlier because I begin to fall apart at that time of day and need to lie down and take a nap (which she knows). If I don't get one, I will basically cease to function and sit there feeling miserable and looking like a zombie...no fun for anyone at the party!!! Then of course I will be in bed for a couple days afterwards! Well, this person made a big fuss and implied that I am just being difficult and should just "make it work this one time". Like I have some control over my body!!!
It's these kinds of things that suck the joy out family events

 

[Brenda Flippen]

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!

Oh my God. This sounds so much like me.The dreaded family gathering,so stressful. Thought

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.

oh my God !! This is so me. I thought I was the only one who felt this way ! I was always "up And on"during these now dreaded events. Now everyone just acts like I have committed immortal sins. The 3rd degree questions never end,"Wht is wrong? Why are you so blue?What happened to you and why don't you fix it? And the best one is still, well that's not really a disease So you just need to snap out of it." What they forget is I used to teach aerobics, high intensity exercise programs and walk 4miles a day. Now I seldom leave home. It's just not worth it. And yes the seasons changing makes it worse. Over doing it, makes it worse. Just plain old wAking up can make it worse. It all depends. My poor husband sort of understands, or maybe he is just used to it. But he has health problems also so that helps him relate to me.I will probably be posting a lot on here as I have had fibro for all of My life. I didn't develope mecfs until 94.And I have had recurring shingles since I was 19, any time I miss 3 days of acyclovir I have a breakout. Yes I have been around for ever. I am 63 yrs young. Refuse to be old. Tried to refuse this disease, But it was persistent. Hope everyone is good, as good as possible that is. Always positive and hopeful, Brenda Flippen

 

[Brenda Flippen]

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.

Yes holidays are too stressful for me also. Our family is super active at holidays and family gatherings. Which I used to love participating in. When it was fibro before the me/cfs ,I could manage some of the activities, with the help of pain meds. But my pain doc dropped me because he thought I wasn't cooperating after I developed very bad side effects from all of the antidepressants. And I don't think he fully believed in fibro ad a disease. Anyway, after a long hard withdrawal from all the pain meds he had me on, I have been left at the mercy of many docs trying to talk me out of being sick. That just doesn't work. My pain doc now gives me tramadol, but has started backing down the dosage. I cannot even stand going to churc without some relief. Let alone family gatherings. Hope you are ok today, in spite of this strange weather . Brenda Flippen

 

[Seeksassy]

"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!

That's what I'm working on, acceptance. The toughest part for me is I remember the rare occasions when a good day stretched to a number of days of feeling "normal". So if I have a really good day, I think hey, maybe this is the start of a remission!! Even tho I think it's been a couple of years since I've had more than 1 day of feeling truly well, I figure if it's happened before it can happen again! That said, I've made huge strides through Acceptance, which is really a very complex idea for me.

 

[John Moore]

CFS is for the most part, invisible. No one wants to hear it. Everyone is "tired". Most people over age 14 ARE tired in our harrowed, driven society. I've one friend who witnessed the sudden onset of my symptoms and who has intimate knowledge of the high energy levels I brought to the table before that fateful, beautiful spring day in 2005. He alone, gets it. And I am blessed to have his validation, he knows that I would be leading an active, productive lifestyle if only I could. Still, I have major difficulty acknowledging my dis-ability. Rarely admitting it to anyone, (they won't buy it anyway) including myself. I am still, after all the years of exhaustive testing, and getting diagnosed by two separate doctors, searching for the real cause of my symptoms...perhaps endocarditis or that weird lump on the bottom of my Xiphoid process, or...

I was invited to a family gathering today. If I were not presently in a very bad stretch, not leaving the house for the most part, I would have demurred since CFS has me trained not to go there, the price paid for that kind of activity is not worth it. It's about isolation, no one see's when I am in bed for days, I become invisible.
I am looking forward to investigating the resources I found here on my first day.
In gratitude.

 

[Seeksassy]

CFS is for the most part, invisible. No one wants to hear it. Everyone is "tired". Most people over age 14 ARE tired in our harrowed, driven society. I've one friend who witnessed the sudden onset of my symptoms and who has intimate knowledge of the high energy levels I brought to the table before that fateful, beautiful spring day in 2005. He alone, gets it. And I am blessed to have his validation, he knows that I would be leading an active, productive lifestyle if only I could. Still, I have major difficulty acknowledging my dis-ability. Rarely admitting it to anyone, (they won't buy it anyway) including myself. I am still, after all the years of exhaustive testing, and getting diagnosed by two separate doctors, searching for the real cause of my symptoms...perhaps endocarditis or that weird lump on the bottom of my Xiphoid process, or...

I was invited to a family gathering today. If I were not presently in a very bad stretch, not leaving the house for the most part, I would have demurred since CFS has me trained not to go there, the price paid for that kind of activity is not worth it. It's about isolation, no one see's when I am in bed for days, I become invisible.
I am looking forward to investigating the resources I found here on my first day.
In gratitude.

For me, too, isolation is one of the most severe side effects.

 

[NancyH]

For me, too, isolation is one of the most severe side effects.

Hi,

First time poster - my comment is not related to family although I do experience all that has been shared here. And I don't know if this topic is posted elsewhere but you can direct me to a better forum if there is one.

I just moved from my house I shared with my husband (who passed away 2 1/2 years ago) into a senior active independent living facility. I was told I was to have fun, Fun, FUN! I was not about to say, fun is just too exhausting. They have all kinds of activities but right now I'm still moving in. I've been here 2 months and just received 2 storage cabinets yesterday as there's just not enough storage space to accommodate my beading hobby. Beading (making jewelry) is a pretty much solitary hobby so its perfect for those of us with a dissease like ME/CFS/FM.

At 75, I have normal aging issues on top of ME/CFS/FM. I have boxes of "stuff" still to unpack and still a few more things to get from my house to make sure they don't get thrown away. Its such an exhausting phase of my life. As exhausting as it was to get thru the initial lost and the tremendous grief of losing my husband (3 yrs after losing my mother), this activity is just as exhausting - just different.

I know my kids think I should be getting involved. But, of course, they just don't "get it" about PEM and limited stamina. I wondered if anyone else has found themselves put away in one of these facilities and do you feel like you are in a prison of sorts. I communicate over the Internet with other beaders and I am editor of an ME/CFS/FM support group newsletter. So I feel I'm doing pretty well. I may take advantage of more activites once I'm truly moved in and my house is sold so I don't have to worry about financial issue. I barely qualified for this place due to my very limited resources.

Hope to hear from someone else in this situation.

 

[Grace2U]

Thank you for this post I no longer feel so alone with my feelings of guilt, frustration, & sadness when it comes to the issue of family gatherings.

 

[Janice Bowden]

I'm a first time poster. I'm in the midst of planning our annual family get together at our house, which we have done for 30 years. I was in a fairly stable remission until I got a tick bite virus last spring and I've gone into full blown FMS. I finally got my pain Dr to send me to aqua therapy which is helping with the pain and stiffness but not the fatigue or brain shut down yet. This year our sons , wives and a mother in law will be spending 2 nights with us. This is my husband's way of helping me, having them here to help get ready for the 120 or so people coming. He's very understanding except for this. Doesn't get that having company for 2 days before a party exhausts me, even if it's family. I know I'm not as bad as some here, but a party this size would exhaust anyone. Most in the family understand or at least know that I can't do much, but I know my daughter in law doesn't and my son doesn't really either. It is going to be a hard 3 weeks getting ready and I know I will crash and burn for a couple of weeks, but it's something we do and I enjoy what I can, do what I can and know what it will cost me.

 

[Cort]

Thank you for this post I no longer feel so alone with my feelings of guilt, frustration, & sadness when it comes to the issue of family gatherings.

They can be brutal sometimes - can't they?

 

[Cort]

Hi,

First time poster - my comment is not related to family although I do experience all that has been shared here. And I don't know if this topic is posted elsewhere but you can direct me to a better forum if there is one.

I just moved from my house I shared with my husband (who passed away 2 1/2 years ago) into a senior active independent living facility. I was told I was to have fun, Fun, FUN! I was not about to say, fun is just too exhausting. They have all kinds of activities but right now I'm still moving in. I've been here 2 months and just received 2 storage cabinets yesterday as there's just not enough storage space to accommodate my beading hobby. Beading (making jewelry) is a pretty much solitary hobby so its perfect for those of us with a dissease like ME/CFS/FM.

At 75, I have normal aging issues on top of ME/CFS/FM. I have boxes of "stuff" still to unpack and still a few more things to get from my house to make sure they don't get thrown away. Its such an exhausting phase of my life. As exhausting as it was to get thru the initial lost and the tremendous grief of losing my husband (3 yrs after losing my mother), this activity is just as exhausting - just different.

I know my kids think I should be getting involved. But, of course, they just don't "get it" about PEM and limited stamina. I wondered if anyone else has found themselves put away in one of these facilities and do you feel like you are in a prison of sorts. I communicate over the Internet with other beaders and I am editor of an ME/CFS/FM support group newsletter. So I feel I'm doing pretty well. I may take advantage of more activites once I'm truly moved in and my house is sold so I don't have to worry about financial issue. I barely qualified for this place due to my very limited resources.

Hope to hear from someone else in this situation.

I'm not in your situation but I wish you good luck getting adjusted to this new situation and getting the logistics all taken care of.

How to communicate more with those that understand - I just don't know. I wonder if the other people at the facility will understand more than your kids. I hope they will.

 

[CountingMySpoons]

I think children/ family can often worry about those we love not "getting out" and doing enough. We just care. I think about my MIL who while she doesn't suffer from any major disorders isn't 100% healthy either. She's moved 90 minutes away and committed herself to being 100% on-call for her father and his wife (often beyond their need or desire). We often worry that she's not doing anything for herself, and she confirms it when we talk to her. I think that is the concern you are hearing from your family, too. You just have the added CFS/FM issues that make it even more difficult for you to "get out". But, as you said not getting out doesn't mean you aren't being active in your own way. I think you just have to let them know that and remind them that you are doing what you are comfortable with in your own time. You are enjoying your favorite hobbies and have great friends that you communicate with regularly. You'll "get out" and discover more of what your new housing has to offer when you are ready to do so.

To respond to the poll question. I put sometimes. Sometimes they are, but the truth is that it's more likely rarely - even for my healthy husband. They tend to be an energy and mental drain for both of us. We both do better in smaller groups than in large gatherings.

 

[fdotx]

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

Haha! Just came upon this post and remembered Minx the bucket list thread where you said you'd.....well....you know....to make up for lost time. When I first saw the picture I thought it was you and thought WOW, you go girl, you have been on noassitol way too long. . Your aunt looks amazing though.

 

[Who Me?]

Wish I could remember what I said. If it was more than a minute ago, it's gone. Must have been about sex though!