No one REALLY gets it

[Nielk]

I feel like even my close family - husband and children, even though they seem to empathize with my pain and illness, they really don;t get how I REALLY feel.
I'm in bed now with a bad crash because we have just celebrated the holiday of Passover in my house. Think Thanksgiving times four. Two night meals and two lunch meals. I thought that I can do it because I delegated a lot of the work and bought most of the food ready.

Big mistake! At one point, I collapsed (literally fell off my chair) to the floor, another meal, I spent the whole time in bed. All the noise, commotion, serving, clearing etc..
I don't know what I was thinking!

Well, I do know. It's one thing I have a very hard time giving up. Family togetherness especially at meaningful times of the year. I already gave everything else up in my life that could bring me joy.

When I told them yesterday that I spent the whole day in bed with terrible pain, they didn't even react. I have been sick for nine years getting progressively worse. I have explained to them countless times about my illness but I think they get it. It's either that they are in denial (because it's too painful for them to accept) or it's just impossible for someone who has never experienced it, to really understand. If the latter is the case, how can we ever really advocate for our illness to outsiders. It's impossible for them to understand. I have noticed that many doctors who are treating or studying ME/CFS, either have the illness themselves or have a spouse or child who has it.

Passover is not over yet. There are more family meals and I am so frustrated!!!!!!!!!!!!!!
I know I can't do it but if I give this up, what do I have left?
This is not called living when you can;t even bear to have your children and grandchildren over.

Its not living. It's just taking up physical space,

 

[kat0465]

Neilk,
Im so sorry your hurting so bad. I think we all have those times when we feel like were just taking up space. Some are blessed to have people around them who understand, my family is a lot like yours. 20 years of this misery, and mine dont bat an eye when I feel as bad as you are

The only thing that has at least helped me is to just give it up, and just do what I can and stop when I need to.it's difficult when were used to doing it all. But I find now that if I just stop and say to myself" tomorrow is a new day,and hopefully a better one" and I jst leave it. No matter the holiday or what needs to be cleaned or fixed

And, I don't talk to my family much about how I feel. I wish I could, but it makes me feel worse when I see how little my suffering affects them.

So I vent on here, or to the few friends I have left who seem to really understand!! Remember your here for a reason!! Be good to yourself, and don't push your body harder than it will stand. I know it's hard, were those type a personalities that want to do everything.

Until there a treatment or cure, we will have to take care as much as we can, so when they do find something. We will have a good chance at getting well. On passover, there's lots of ways to celebrate!! I say make someone else cook

Take care, kat

 

[jewel]

Nielk-- So sorry to hear this! I've come to the conclusion that people cannot handle "chronic" anything in others. They are better with acute; even if they are overall loving, caring family members they habituate to another's disability or illness so that it becomes background. I have friends or family with congestive heart disease, MS, autoimmune thyroid issues etc. who say the same thing happens to them. I think the main, key difference is that, overall, society recognizes these that I have listed as "legitimate" illness, but people around these folks also habituate to their illness and fail to recognize it, unless the person with CHF is in the CICU in a heart failure episode, for instance. So frustrating! A friend of mine with chronic sinus disease and a different type of immune illness was amazed at how much support she got when she was in a soft cast due to a hairline fracture in her foot compared to the many times family and friends knew she was struggling through another active infection. With the infections, she more or less looks ok.

And, I understand your not wanting to give up the family gatherings, and yet, they wipe you out! I (maybe mistakenly) invited friends over for Easter dinner (note: just one night, no real ceremony or specific foods need to be made) and now am looking at the mess of my house wondering how to get at least part of it picked up and the meal cooked... and my husband and daughters will help me.

Wishing you well and sending good thoughts your way!

 

[Sasha]

I'm so sorry to hear about your experience, nielk. I wonder if it might be possible to do things differently next year (!).

This year, I was too sick to travel to visit my family (I am single and have no children so my family are my mother, sister and sister's family) and spent my first ever Xmas alone. They were all 250 miles away in their homes in the same town and it didn't make sense for them all to come here on Xmas Day (huge expense for hotels, travelling in the snow, children coming from all over the place, me too tired to see them all at once or for more than an hour).

I thought it might be awful spending Xmas alone (I was too sick to even want to have visitors that day) but actually it was calm and pleasant! And I caught up with the family on Xmas Day via Skype. I felt included but without the stress of either travelling or coping with festivities that would have been too much for me.

My mother, sister, niece & her partner came to visit me after Xmas when I could cope with it and just came to be with me for short spells over a couple of days so as to let me pace myself.

I am lucky that my family understand how limited I am forced to be and that's a huge plus. I wonder if it might help your family to realise this if you say next year (or even now if it's not too late!) that you can't join in and maybe do some things to engage with them less directly (Skype, time-limited visits one or two people at a time, no catering for them).

I know it's not ideal but I hope that for all of us, these measures will be temporary and one day we'll have a normal life again! In the meantime, it's important not to get sicker by pushing ourselves. Even nice things like festivals can be a huge strain if we struggle to do them like we did in healthier days.

 

[warriorseekspeace]

I get it. More later.
Hang in there. We are all valuable.
Warrior.

 

[Dainty]

*big hugs*

You're right, they don't get it, and that fact can feel so lonely at times. One trick that I use on myself--it doesn't always work, but sometimes it does--is to tell myself that I'm glad they don't understand, because the only way to fully understand is to experience it for themselves, and I wouldn't want that. Still, it does make things rough at times. Even my caregiver, who's been with me for years and knows my condition the best, still sometimes needs me to spell things out...for example, the other day I had to explain that I was in need of extra care for a day or two to recover from her being on vacation (I had a substitute). She's really, really great at caring for me, but she's also healthy and thus unaware of matters until I articulate them to her.

Giving up family togetherness is really, really really rough, and I'm so sorry that you're finding yourself heading in that direction. I had to a few years ago, and now I have cousins who've never had the chance to make memories with me. Most of the time it's too painful for me to think about. But if there's any way that you can still participate in their lives, even without the big get-togethers, that would still bring some joy, yes?

I don't know what else to say, just know that we're here for you and we get it. :grouphug:

 

[caledonia]

For next year, you're going to have to redesign Passover into "Passover lite" ie something you can handle without crashing, or only crashing a little. So that may mean, not hosting at all, or only doing one meal, getting others to clean and cook, etc. The others have given some other good ideas.

 

[Nielk]

This is why I post here!
Thank you for all the support.
Just knowing that you guys get it is a load of my shoulders.
Thank you for your empathy and advice.
I feel better already just from reading your posts.
It's amazing how validation of my feelings is so important.
I already called off a couple of meals and my husband - since he is home for Good Friday, is helping me.
He saw me crying (not a pretty sight), and asked if I was upset at HIM. I explained how I am feeling and he told me just to rest and he'll take care of things. What's amazing to me is that I would think by now, he would just know. But, I have to each time explain to him. Maybe it's a guy thing and I'm probably at fault too because I hate to complain all the time. I don't manage well being the weak one who can't do anything. It's not a good role for me. (I would imagine it's a problem for most of us).
You each did a big "Mitzvah"=good deed.
Yhank you!

 

[Leslie]

Nielk,
No,most people don't get it. It is unfortunate, but they don't. When I can get myself together and get out I would be asked....."how are you?" "How are you today?" On and on and then it is all about my illness, how I have been doing, I do appreciate, but.....then I never hear from them again, until the next time I get out and we are in the same place, then it is the questions again, oh yes, and I get, "I have been thinking about you." Really? Now, this is people from my former church. Now, they are nice people, but, they don't get it. IF they did......
I don't want to go out on a good day and talk about how sick I am 99% of the time!

We all have our frustrations with this and I think just using a forum like this with others who do really understand does help, a bit. My husband doesn't even really get it, now, if he doesn't, who would. As I type, and he doesn't work, I have been up since early this morning with the dogs taking care of them....when he could get up. He knows my bad time is mornings......so....and he isn't a bad person, he truly does not understand.
I am exhausted....this is the best I can do right now! Wish I was more positive,

 

[Nielk]

Leslie,

Your first paragraph could have been written by me. I have the same experience the rare times that I can get out.
That's why when I leave the house, I use the back door and quickly slide into my car which is parked in the back driveway.
I can't cope with all the questions and show of concern...until I see them again months later and go through the exact same conversation.

 

[Carrigon]

I think the worst holiday of my life was somewhere in the first two years of this illness. My mother didn't understand how sick I was and she invited a bunch of houseguests for the holiday, I think it might have been Thanksgiving, I can't remember. All I remember was that I was so sick that I could not turn over in bed. The energy was not there. I couldn't even form thoughts, it was like just the energy to form a thought was so hard. And the houseguests did NOT understand and would not let me rest. And I remember all the pain I was in. And they had no understanding of it. A good old friend of mine was there and she didn't didn't get it that I needed to rest in peace. And she sat with me and it only made it worse. Especially because she kept trying to talk to me, and I couldn't get the energy to speak. It was really, really bad. Sometime much later after that, my mother actually did apologize to me for doing that. But it was too little, too late.

 

[illsince1977]

I hear you. First time ever no Pesach and I always looked forward to it. Definitely feel like I'm just taking up space.

 

[Graham]

My son went down with ME in 1989 when he was 8. For 10 years I tried so hard to support him, and to understand how he felt, but I know there were many times when I just didn't get it, even though we have always been close. It breaks your heart when you see your own child lose his teenage years. I found it so hard to accept the fact that nothing helped. Then, in 1999, I went down with ME. Now I get it, and we are still close.

Just because people who matter to you don't get it doesn't mean that they aren't trying, it doesn't mean that they don't love you: it just means that this illness is so utterly alien to their experiences that they can't get their heads around it. It probably takes as long for them to understand it as it takes us to adjust to having it (i.e. a very long time indeed).

Mind you, there are also very many people who don't even try to get it!

Would an e-hug help, Neilk?

 

[Dreambirdie]

So sorry to hear about your travails with this all too familiar family scenario.

I agree with Caledonia that cutting back on your responsibilities the next time around would be a real good option to consider.

As for people... all I can say is humans are NOT a very evolved species. Keeping that in mind and having lower expectations has been very helpful for me.

 

[Mya Symons]

I do not even talk to my sisters or my father anymore. My mom passed away several years ago. They never ask about my illness or even how I am doing except when I was in the hospital with an infection. (because that's real you know) I started doing what they did to me. My dad would call and complain about getting older and not feeling well and my sister would want to talk about her divorce and I would say exactly what they would say to me-- "I'm sorry, I have to go and do this or that and can't talk anymore, but we'll catch up later." Honestly, I rarely ever talked about how I was feeling because it made me uncomfortable to talk about it with them except when they would ask me what I have done lately. I would have to explain to them, once again, that I can't do much. And, that is when they would hurry to get off the phone.

I guess they think I am impolite for doing the same thing they do, but do not understand how they are impolite for doing it to me. I am the kind of person who has to keep things real. I can't do fake and pretend that everything is great in a relationship when it is not. So it is better that I do not speak to them except when I absolutely have to. I have a great husband and two awesome kids. I am lucky that I do not need to rely on them for anything. I couldn't if I had to anyway. I read those stories about the people with CFS/ME whose mom or dad have taken care of them for years and can honestly say that there is no way in hell my mom, dad or sisters would have done that for me. I am glad I got this illness when I was older or I probably would have ended up in some type of institution. I can't imagine not doing whatever you could for your children and would not hesitate. Hopefully, it will never come to that.

 

[Timaca]

Nielk~
First, hugs to you.
Second, guys (especially our husbands) don't get it. I'm glad you explained it to your husband again, and that he is now helping you out more. Keep expressing your needs to him in a kind way. Sounds like he is willing to help when he understands the need.

Hang in there..... Have you checked out this website? http://chronicfatigue.stanford.edu/ Treating some of the pathogens has helped me.

Hugs again,
Timaca

 

[Dainty]

Thank you for your post, Graham. You have a unique perspective on it, and it really helps to hear the "other side"....which, sadly, you're now on too.

I do find it necessary to articulate things to my caregiver(s), even things that feel obvious to me. I think that sometimes healthy people have a hard time understanding "chronic"; their brains tend to do an automatic "reboot" after a certain period of time and subconsciously assume that whatever it is you told them about has improved, because that's the way "normal" illness works. Factor in the fact that many of us appear healthy and that makes it even more difficult.

I'm recalling one time when I was in such extreme, excruciating pain, and my caretaker was driving me (because that helps some) and I was talking a million miles a minute because of how terrible the pain was.....and she noted that, while she completely believes me, she finds it amazing that from appearences I look like I'm just fine, and actually that I'm just really excited about something. After all these years she still found that she had to keep reminding herself that despite appearences, I was still in just as much pain as I was in an hour ago. It took conscious effort on her part, because her brain wanted to keep assuming that things had improved because I really did look fine.

So....it's hard on the people who care for us. But as long as we keep explaining and reminding, and they keep trying, then usually an understanding on some level may be reached--perhaps not a firsthand understanding, or an understanding of how you're feeling, but if you can communicate enough so that they develop an understanding of your needs and of the reasons why behind them, then that comes pretty close.

 

[alex3619]

Hi, my perspective on people "getting" it is this. For many years I did not understand myself. I could not understand why exercise made me worse. I could not understand why I felt fine until I tried to do anything (I was only a mild-moderate patient in the early 80s). I could not understand why my doctors knew nothing. I could not understand why drugs did not work. I could not understand that I could not push through my symptoms. I did not understand that I needed to rest frequently. In short, *I* did not understand. It wasn't until I gave up on getting info from docs and went looking for it myself, and reassessed my situation, that I began to understand.

If I didn't understand, it is to be expected that anyone without extensive personal experience of these things will not understand either. I think the most we can hope for from most people is acceptance not understanding.

Bye
Alex

 

[*GG*]

Nielk~
First, hugs to you.
Second, guys (especially our husbands) don't get it. I'm glad you explained it to your husband again, and that he is now helping you out more. Keep expressing your needs to him in a kind way. Sounds like he is willing to help when he understands the need.

Hang in there..... Have you checked out this website? http://chronicfatigue.stanford.edu/ Treating some of the pathogens has helped me.

Hugs again,
Timaca

You probably should have excluded the guys on this forum, perhaps it is brain fog?!

GG

 

[Timaca]

Good point GG! The guys on this forum do get it!

Best,Timaca