No one REALLY gets it

[Nielk]

The guys on this forum definitely get it! I should have made it clear from the beginning that I meant healthy men who never experienced this torture.
The guys on this forum have given me a lot of support and understanding and I'm very grateful to therm.

Passover is over and somehow I survived it with pain and crashing.
I was just thinking how glad I am that it's over and I can start to rest it out and rebuild some strength and one of my daughters called me that she has wok tomorrow and the preschool for her little daughter is closed, do I think I can help out with watching her for a while.

This is the daughter who I thought has the most understanding. I hate being put into this position time and time again to have to say no.

So I end up being the unhelpful grandmother but, I don't have a choice. What can I do - this seems to be my destiny.

I think I would be better off always saying no because if you give them a little, they always expect more.
It's just not in my nature to be that way but, I don't see another way out.
Except one that I've been thinking about a lot lately.

 

[Graham]

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.

Thinking back, yes, you are right. I knew my son was ill, and that it was very bad and very real. Not for one minute did I think that he was faking or exaggerating it. But, you are right, my mind kept rebooting into a normal illness where you start to get better, where symptoms start to lessen, and where you start to want to do things again, albeit very gently. Whether that was optimism or stupidity on my part is a good question. I suppose that I just couldn't get my head around the fact that this 13 year-old had been ill for 5 years, and was going to carry on being as ill as this no matter what we did.

In fairness, my wife got it much faster than I did, and despite "political correctness", I'm sure that there is something different in the way that men and women's mind work (please interpret that in the same way as a statement like "men are taller than women" - an averaging statement, not applicable to many individuals).

To me, now, people fall into two camps - those that try to understand, often don't, but they do try so are worth keeping as friends, and those that don't try. The ones who really understand, yet don't have ME, like my wife, are truly exceptional.

 

[Nielk]

Thinking back, yes, you are right. I knew my son was ill, and that it was very bad and very real. Not for one minute did I think that he was faking or exaggerating it. But, you are right, my mind kept rebooting into a normal illness where you start to get better, where symptoms start to lessen, and where you start to want to do things again, albeit very gently. Whether that was optimism or stupidity on my part is a good question. I suppose that I just couldn't get my head around the fact that this 13 year-old had been ill for 5 years, and was going to carry on being as ill as this no matter what we did.


In fairness, my wife got it much faster than I did, and despite "political correctness", I'm sure that there is something different in the way that men and women's mind work (please interpret that in the same way as a statement like "men are taller than women" - an averaging statement, not applicable to many individuals).

To me, now, people fall into two camps - those that try to understand, often don't, but they do try so are worth keeping as friends, and those that don't try. The ones who really understand, yet don't have ME, like my wife, are truly exceptional.

Graham,

You just did an exceptional job explaining what goes through the minds of some family members of PWCs. No one ever explained it to me as well as you just did. The truth is that as much as I complain that no one gets it. I come from the point of view of the patient. I'm sure I don't fully understand what it's like for the family members who have to see your loved one suffer. It must be so hard for you to see your young son suffer for so long! I think that mothers in general have to take a more practical role as far as childcare and even more so when the child is sick.
The truth is that this illness is so hard to wrap around anyone's brain. It defies logic.

I hope your son's illness takes positive turn and has a full recovery and you and your wife can relax and stop worrying.

 

[Graham]

Graham,I hope your son's illness takes positive turn and has a full recovery and you and your wife can relax and stop worrying.

Thanks Nielk. He's 30 now, so we have all pretty much adjusted to our new lives. It's not that we like it that way, but at least we both accept that this is the way our lives are and we have to "enjoy" the way that it is. He has made many ME friends (plus girlfriend), and we are both involved in ME forums. That is the big boost: there are so many really nice people out there with ME that we never would have met.

I'm sorry that things aren't as good for you. I think it must be so much harder when you are the only one with ME, and, quite wrongly, it seems that women with any illness aren't always taken as seriously as men, even by women doctors. Weird, but true.

 

[ixchelkali]

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

I know the pain, frustration and grief as this illness carves away more and more of what is important to you. First you give up the things you must, then the things you dont want to, and finally the things you cant possibly give up. But you do. And it IS still living. It is NOT just taking up physical space; or at least, it doesnt have to be. You are still a living being with a heart and a spirit. Your worth is not defined by what you do, but by who you are inside.

First you grieve. Then you begin to move on. And then, maybe, you grow in spirit.

Isnt that what Passover is all about, really? Sure, its a time to be with family and to celebrate. But what are you celebrating? You think those ancient Hebrews didnt feel like they had lost everything when they went from being free people to being slaves? And when they thought it couldnt get any worse, their sons were massacred. And the grace they were given, the great gift, was to leave the only home they had ever known and strike out to start from scratch is a strange land. So whats to celebrate? Because they triumphed, thats what. Because they didnt give up. Because life itself is a gift, even when it doesnt go the way you planned.

What will Passover be like for you next year? I dont know. Maybe you will lie there alone in your bed of pain and call G-d a rat fink for giving you this disease, like Job did. Or maybe you will think that this disease is your bitter herbs, and now its up to you to find the honey. Do you believe that the lands the ancient Hebrews traveled to were literally flowing with milk and honey? Or did life simply seem sweet and abundant to them because they discovered the gifts of the spirit?

I dont mean to lecture you. I say this because I have fought, and continue to fight, these same battles within myself. I realize that when I say they just dont get it, thats wrong. Im the one who doesnt get it. Im judging my holiday celebrations from the point of view I had before I was sick; that is, Im judging them from a healthy persons perspective. And that isnt reality, my reality now, as a sick person. Its like saying if I cant have all that I used to have, then what I have now is worthless. And thats like kicking G-ds greatest gift, life, in the teeth and saying its worthless. No! Its up to me to find the meaning which is there. To find the honey.

Im trying to learn to take happiness in my loved ones joys, even when I cant be there in person to celebrate with them. If they cant understand why I have to say I cant do this, maybe I can be happy that they are so healthy they cant imagine what it is like to be ill. I try to see this as an opportunity to find the meaning in holidays when they are stripped of the rituals and accoutrements. I feel as if the way I can really triumph over this illness is if I dont let it destroy my spirit, if I can find ways to enjoy a life stripped bare. What I want is for my spirit to grow and soar, as my physical life becomes more constricted.

Something always strikes me when the news reporters interview survivors of a natural disaster, people whose homes have been blasted to smithereens by a tornado or an earthquake or something. Some people will stand weeping in the rubble of their lives and say Weve lost everything, everything!, while others will say We are so fortunate, we still have our lives. I want to be the one who can stand in the wreckage of my former life and see that Im lucky to have my life. If my life doesnt have the meaning it used to, I want to find new meaning.

My wish for you is that next year you will tell the family that you arent well enough to host the Seder and that someone else will do it and find a way that you can be included without exhausting yourself. I hope that even though they dont get it about this illness, that that will find ways to show they love you even when you cant take the role in the celebration that youd like to. And I hope your spirit soars so high above this lousy disease that maybe even the disease itself becomes a gift. Or better still, that one day there will be a treatment so youre not faced with these choices. Next year in Jerusalem.

 

[Nielk]

I know the pain, frustration and grief as this illness carves away more and more of what is important to you. First you give up the things you must, then the things you dont want to, and finally the things you cant possibly give up. But you do. And it IS still living. It is NOT just taking up physical space; or at least, it doesnt have to be. You are still a living being with a heart and a spirit. Your worth is not defined by what you do, but by who you are inside.


First you grieve. Then you begin to move on. And then, maybe, you grow in spirit.

Isnt that what Passover is all about, really? Sure, its a time to be with family and to celebrate. But what are you celebrating? You think those ancient Hebrews didnt feel like they had lost everything when they went from being free people to being slaves? And when they thought it couldnt get any worse, their sons were massacred. And the grace they were given, the great gift, was to leave the only home they had ever known and strike out to start from scratch is a strange land. So whats to celebrate? Because they triumphed, thats what. Because they didnt give up. Because life itself is a gift, even when it doesnt go the way you planned.

What will Passover be like for you next year? I dont know. Maybe you will lie there alone in your bed of pain and call G-d a rat fink for giving you this disease, like Job did. Or maybe you will think that this disease is your bitter herbs, and now its up to you to find the honey. Do you believe that the lands the ancient Hebrews traveled to were literally flowing with milk and honey? Or did life simply seem sweet and abundant to them because they discovered the gifts of the spirit?

I dont mean to lecture you. I say this because I have fought, and continue to fight, these same battles within myself. I realize that when I say they just dont get it, thats wrong. Im the one who doesnt get it. Im judging my holiday celebrations from the point of view I had before I was sick; that is, Im judging them from a healthy persons perspective. And that isnt reality, my reality now, as a sick person. Its like saying if I cant have all that I used to have, then what I have now is worthless. And thats like kicking G-ds greatest gift, life, in the teeth and saying its worthless. No! Its up to me to find the meaning which is there. To find the honey.

Im trying to learn to take happiness in my loved ones joys, even when I cant be there in person to celebrate with them. If they cant understand why I have to say I cant do this, maybe I can be happy that they are so healthy they cant imagine what it is like to be ill. I try to see this as an opportunity to find the meaning in holidays when they are stripped of the rituals and accoutrements. I feel as if the way I can really triumph over this illness is if I dont let it destroy my spirit, if I can find ways to enjoy a life stripped bare. What I want is for my spirit to grow and soar, as my physical life becomes more constricted.

Something always strikes me when the news reporters interview survivors of a natural disaster, people whose homes have been blasted to smithereens by a tornado or an earthquake or something. Some people will stand weeping in the rubble of their lives and say Weve lost everything, everything!, while others will say We are so fortunate, we still have our lives. I want to be the one who can stand in the wreckage of my former life and see that Im lucky to have my life. If my life doesnt have the meaning it used to, I want to find new meaning.

My wish for you is that next year you will tell the family that you arent well enough to host the Seder and that someone else will do it and find a way that you can be included without exhausting yourself. I hope that even though they dont get it about this illness, that that will find ways to show they love you even when you cant take the role in the celebration that youd like to. And I hope your spirit soars so high above this lousy disease that maybe even the disease itself becomes a gift. Or better still, that one day there will be a treatment so youre not faced with these choices. Next year in Jerusalem.

Thank you for your so well thought out reply to my problem. I can feel that you are definitely understanding my pain, yet you are a very spiritual person and can rise above it. I have to say that you are giving me a good lesson here. Like they say "if life gives you lemons, make lemonade". You have to make the best of what you are given. I do get a lot of joy if I see my family happy and achieving great things. It's like I'm getting my strength from seeing their joy. There is no question about it. I think that it'a a flaw in my character that I have a hard time accepting the reality of how hard hit this illness has hit me and I try to hold on to a life that is no longer there.

I am always amazed at people who have gone through the holocaust with all their atrocities and when liberated, carved a life for themselves. They lead seemingly normal lives, even the ones who have lost their whole families. In addition, many of them have remained loyal in their faith in God. Their inner strength amazes me. I think to myself , their pain was so much worse then what I am going through.

My difficulty (I think ) is not so much my own pain but how it's affecting my whole family.

You are right though, I need to learn to cope and make the best out of the situation I was given. As long as there is life, there is hope.

Amen to "Next year in Jerusalem"

 

[Graham]

My difficulty (I think ) is not so much my own pain but how it's affecting my whole family.

Hi Nielk

Me again! I used to teach (can't you just tell?), and one thing that I noticed very clearly was that children who grew up in families where everything was easy and comfortable were never very good at handling even minor stresses, whereas those who had experienced the realities of life - that it isn't fair, that there isn't always a solution - had a much more balanced approach to things, and a lot more empathy for others. It doesn't always show within the family though!

Mind you, I have come across a few exceptions, but don't they say that they prove the rule?

Your comment about those who survived the holocaust is similar, isn't it? We get a cold and feel sorry for ourselves. We get something like ME, feel sorry for ourselves, but it also makes us think deeply about all those who suffer or have suffered so much more than us. When I read about how much so many of you have to put up with, and how bad your ME is, that puts my own lesser levels of difficulty into perspective.

 

[icalla]

Nielk, I had a really hard time with Pesach this year, too. I love Pesach - it's such a lovely time of year, and it's the time that my mom, my sister and I get together to plan and arrange and cook and beautify my mother's home... the last couple of years, our own children have been involved in the ritual. This year, it was painful to have to secret myself upstairs while they did everything, and to have to leave the table to get some quiet time. So hard.

But like ixchelkali says, I had to look at it with new eyes. I did what I could. We brought my stool from my house, and I was able to do the flower arrangement. I watched for a little while as the children made the placecards, and I was there for the bulk of the Seder itself (albeit it was an express version, due to the number of young children and the lack of religiosity of my family and our guests).

That has to be enough for this year. That's what I was able to give, and that's it. It took a few days to recover. Oh well. But I felt good about what I did do.

As to Graham's point about children, I fully agree, as a teacher and a Mom. I see what it does to my child, and I hate it, but I know in the long run, having to adjust himself to my illness is actually going to make him a better man. I just wish it didn't have to be so chronic

 

[Nielk]

It's interesting what Graham and Icalla are "teaching" me.

Children who have to deal with difficulties in their life will build character. It will make them better people.
I shouldn't worry of how my illness is affecting them.
It makes logical sense and my childrearing philosophy is not to spoil children.

I have a hard time though being myself the cause of worry for them.
I just have to accept that It's not in my power to change things and feeling guilty about it doesn't help anyone,

I'm happy for you Icalla that you were able to enjoy the holiday at your pace.

 

[icalla]

It wasn't easy, but I did
Listen, I beat myself up all the time for not being there as much as I'd like for him, and all that. All the time. But I try to keep things in perspective. That's all we can do, right?

 

[Graham]

It wasn't easy, but I did
Listen, I beat myself up all the time for not being there as much as I'd like for him, and all that. All the time. But I try to keep things in perspective. That's all we can do, right?

And I beat myself up for not understanding what my son was going through before I went down with it - but you are so right icalla, we have to accept that we get some things wrong, and that there are many things that we just can't help. But kids who have a tougher time, but know they are loved, are so much happier than the ones who have it easy but are not loved.

Getting deep here! I'm a feller - I'm not supposed to be doing that! I blame it on working with women for most of my life (which is also why I stopped having sugar in my tea).

 

[illsince1977]

It is only natural to want to "nurture" your children. And you can consider yourself a well trained Jewish mother for wanting to "do" Pesach, Neilk. What could be more natural foe a Jewish mother?

Giving anything up to this illness is hard. It's very, very hard. I know no one here is saying it isn't. This is our challenge. What we wouldn't all give for it not to be! I've had it my children's whole life. It's not easy on them either and they all rise to the challenge according to their own abilities and experiences. As parents we all hope they are the better for it. It is up to them, as we are already doing the best we can to change whatever it is in our power to change.

I am struggling to accept (still, after all these years). Just know that there are people out there who are listening and understand. I hope that is some small comfort to you.

 

[Nielk]

I am struggling to accept (still, after all these years). Just know that there are people out there who are listening and understand. I hope that is some small comfort to you.

It's a great comfort to me to know that people are listening and understanding.
It's invaluable!

Thanks to all.

 

[mellster]

I always have to think of one of my fav Megadeth songs called Trust, where Mustaine sings "I smile and say yes, another truth bends I must confess". That's usually my reaction when being told that CFS/FM is mostly an attitude/psychological problem. While it's worth promoting the general cause I am saving my energy and not engage in personal arguments. It's natural for most people to be utterly afraid of conditions that they can hardly influence with their psyche, so they tend to deny their existence

 

[Nielk]

I always have to think of one of my fav Megadeth songs called Trust, where Mustaine sings "I smile and say yes, another truth bends I must confess". That's usually my reaction when being told that CFS/FM is mostly an attitude/psychological problem. While it's worth promoting the general cause I am saving my energy and not engage in personal arguments. It's natural for most people to be utterly afraid of conditions that they can hardly influence with their psyche, so they tend to deny their existence

I think that you are generous when you say that people are afraid of the unknown like our illness. ?I don't think that they are afraid, I think that they truly don't believe us. Whatever they can't see or feel themselves, they are very skeptical in believing.
From my personal experience, I think that people think that I am exaggerating my symptoms and if I would just force myself, I could do whatever I want.

 

[Carrigon]

Nielk, if I had money for every time someone told me to just push myself, I'd be rich by now. They don't get it that I push it just to do anything, walk across the apartment, or just getting out of bed. For me to get my snail mail or do my laundry or make something to eat, that is major pushing it.

 

[Nielk]

Nielk, if I had money for every time someone told me to just push myself, I'd be rich by now. They don't get it that I push it just to do anything, walk across the apartment, or just getting out of bed. For me to get my snail mail or do my laundry or make something to eat, that is major pushing it.

I hear you. Do you have anyone that you can rely on for some help when you need it? That is so crucial for us. I haven't been able to get out to do any grocery shopping for the past two months. Thank God I have my husband who does it for me. I don't know what I would do otherwise.

Even my husband who has lived along with me this past 9 years of being ill has told me lately that I should take short walks every day and I would feel better. I don't think that the advice comes from a bad place. I think people think logically, it's just not good for anyone to just lay in bed all day - the body needs some movement and the fresh air is healthy to breathe in. It defies logic - the way we feel and the PEM that we suffer, that's why it's so hard for anyone who is not sick with this to truly understand it.

 

[Carrigon]

I'm alone now since my mother passed away four years ago. I have no one to do anything for me. So I just stock up on stuff and if I can't go out, I'm usually pretty well stocked with food and paper goods.

My doctor keeps telling me to exercise. No one gets it that we can't. If I could, I'd be doing it. And my neighbor told me I should go out more, that it's not healthy to be cooped up inside all day. It just gets so frustrating that they don't get it. Would we really choose to be stuck in the house all day?

 

[Graham]

Even my husband who has lived along with me this past 9 years of being ill has told me lately that I should take short walks every day and I would feel better. I don't think that the advice comes from a bad place.

Oh Nielk, that brings back painful memories of when my son was around 16 and we all went on holiday together. He had just finished his exams, so was pretty washed out and did very little. One day I pushed him to try a trip out in the car - just for some fresh air and a look at the scenery. Of course it did him no good at all - quite the opposite. As I said before, now I get it, but then I suppose it was so painful watching life pass him by I just thought if he could get a little bit of pleasure, it would be better. How wrong can you be?

No, comments like that often don't come from a bad place - quite the opposite at times - you long to be able to bring a bit of joy or life back into their lives. You could try mentioning to your husband that a new member has been talking about getting ME 10 years after his son went down with it, and how, looking back at some of the things he had done to try to help make things better, now he realises that ME doesn't work like that. If it helped, I'

I know we suffer badly with ME - I'm lucky because my symptoms are not as bad as many of you - but we must also remember the amount of pain our suffering causes those who love us and are unable to fix us.

 

[Nielk]

Oh Nielk, that brings back painful memories of when my son was around 16 and we all went on holiday together. He had just finished his exams, so was pretty washed out and did very little. One day I pushed him to try a trip out in the car - just for some fresh air and a look at the scenery. Of course it did him no good at all - quite the opposite. As I said before, now I get it, but then I suppose it was so painful watching life pass him by I just thought if he could get a little bit of pleasure, it would be better. How wrong can you be?

No, comments like that often don't come from a bad place - quite the opposite at times - you long to be able to bring a bit of joy or life back into their lives. You could try mentioning to your husband that a new member has been talking about getting ME 10 years after his son went down with it, and how, looking back at some of the things he had done to try to help make things better, now he realises that ME doesn't work like that. If it helped, I'

I know we suffer badly with ME - I'm lucky because my symptoms are not as bad as many of you - but we must also remember the amount of pain our suffering causes those who love us and are unable to fix us.

You just did what I think any father would have done. It's very hard for the family to just watch a loved one suffer. I try to put myself in my husband's or children's shoes and I can imagine how hard it is for them and mainly how frustrated they must feel that they can't do anything about it.

I usually complain about my pain and lack of their understanding but, I should more often try to feel what they are feeling. (and then really feel guilty)

Thank you Graham for showing me the other side.