Jody submitted a new blog post:
Can You Come for a Visit? My ME/CFS Says No
New grandma Jody Smith shares her frustrations about not being able to visit the new baby...
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
The little family lives a province away and we can't afford to make the trip. And that includes not being able to afford the energy it would require.
People automatically -- and naturally -- ask if we're going to fly out to see them, and I must repeat to one then another that, no we won't be able to go.
I want to. Boy, do I want to. But even if it was possible to buy a ticket I don't know whether I would be able to make the trip. And I don't know whether they would end up having to take care of me.
I'm thankful for Facebook, and emails, and pictures. Certainly it is easier to be a long-distance grandparent now than it was for my parents' generation.
But it's still frustrating. You know what I'm talking about. I'm not just writing this to complain and feel sorry for myself. (Okay, that is one of the reasons.) But it's also to commisserate with all of you who also can't reach the people you love because of the limitations of ME/CFS.
For those of us who have severe symptoms, our loved ones don't even have to be in another province. Maybe they're less than a half-hour drive from you. But if you can't manage that short trip -- or if you are too ill to have them come to your house -- they might as well be a world away.
This is such a difficult challenge for many of us. It is not well understood by the healthy world. It's embarrassing to have to say, no, I'm not going to see the new baby. No, I won't be going to the wedding. No, I'll have to miss the graduation, the christening, the reunion ...
And forget about what other people think. We wonder if our kids know how much we love them. Do they know in their hearts that if we could be there, we would? How much are they missing out on when we can't jump on a plane, or hop in the car and just GO ... ? We all know the answer to that and it breaks our hearts.
And yet.
We have to accept our realities, and accept the limitations on what we can and can't do. We tell them how much we love them. We tell them we'd be there if we could. And hopefully our kids know us well enough to believe us.
We get as creative as we are able. Some of us can Skype without neurological craziness. Some of us can't do that. But maybe we can email or write on Facebook. We can devour photos and click Like, Like, Like. We can lol and send hugs and kisses xoxoxoxo
And we remind ourselves that despite the limitations our love and past history are very real and they matter, to us and to the people who are so important to us. We hope for the day when we will be able to jump on the plane or hop in the car and go. We look forward to visits from them (those of us able to have company without crashing). We send gifts when we can.
The old slogan from Bell about phoning being "the next best thing to being there" may ring hollow at times but the telephone partners with the internet as open doors for many of us and we take advantage of them. Because we love our kids, our friends, and though it drives us nuts that we can't go see them, we are lucky to have these open doors.
Do you have loved ones you miss that you can't go to visit?
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.
And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.
Continue reading the Original Blog Post
Can You Come for a Visit? My ME/CFS Says No
New grandma Jody Smith shares her frustrations about not being able to visit the new baby...
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
The little family lives a province away and we can't afford to make the trip. And that includes not being able to afford the energy it would require.
People automatically -- and naturally -- ask if we're going to fly out to see them, and I must repeat to one then another that, no we won't be able to go.
I want to. Boy, do I want to. But even if it was possible to buy a ticket I don't know whether I would be able to make the trip. And I don't know whether they would end up having to take care of me.
I'm thankful for Facebook, and emails, and pictures. Certainly it is easier to be a long-distance grandparent now than it was for my parents' generation.
But it's still frustrating. You know what I'm talking about. I'm not just writing this to complain and feel sorry for myself. (Okay, that is one of the reasons.) But it's also to commisserate with all of you who also can't reach the people you love because of the limitations of ME/CFS.
For those of us who have severe symptoms, our loved ones don't even have to be in another province. Maybe they're less than a half-hour drive from you. But if you can't manage that short trip -- or if you are too ill to have them come to your house -- they might as well be a world away.
This is such a difficult challenge for many of us. It is not well understood by the healthy world. It's embarrassing to have to say, no, I'm not going to see the new baby. No, I won't be going to the wedding. No, I'll have to miss the graduation, the christening, the reunion ...
And forget about what other people think. We wonder if our kids know how much we love them. Do they know in their hearts that if we could be there, we would? How much are they missing out on when we can't jump on a plane, or hop in the car and just GO ... ? We all know the answer to that and it breaks our hearts.
And yet.
We have to accept our realities, and accept the limitations on what we can and can't do. We tell them how much we love them. We tell them we'd be there if we could. And hopefully our kids know us well enough to believe us.
We get as creative as we are able. Some of us can Skype without neurological craziness. Some of us can't do that. But maybe we can email or write on Facebook. We can devour photos and click Like, Like, Like. We can lol and send hugs and kisses xoxoxoxo
And we remind ourselves that despite the limitations our love and past history are very real and they matter, to us and to the people who are so important to us. We hope for the day when we will be able to jump on the plane or hop in the car and go. We look forward to visits from them (those of us able to have company without crashing). We send gifts when we can.
The old slogan from Bell about phoning being "the next best thing to being there" may ring hollow at times but the telephone partners with the internet as open doors for many of us and we take advantage of them. Because we love our kids, our friends, and though it drives us nuts that we can't go see them, we are lucky to have these open doors.
Do you have loved ones you miss that you can't go to visit?
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.
And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.
