So painful

I have not been active for some time, but realize now how desperately I need support. lst dx. in 1996 and the progression has been slow but steady, mostly in my extremities. to add insult to injury, am also suffering from extreme arthritis. sometimes wonder where one disease begins and the other ends. Have spent most of the past 2 wks. bed bound as presently also recovering from what is called the “summertime flu”. ever hear of that one? live with 2 grown men (husband and son), and neither offer much help or empathy, but I suppose others have the same problem. people tend to avoid others with health issues, don’t they? I have lost a multitude of friends, but feel they are not true friends after all. would enjoy hearing from others with same or similar issues and making new friends. Bless us all.

Dear irishgramma,

I know exactly what you mean about trying to make and keep friends. What few friends I did have couldn’t pronounce my syndrome, let alone want to know about it. They were too busy examining their own navels. (Sorry). And yes, if your friends left when you were diagnosed, or shortly thereafter, they weren’t really friends. I seem to be drawn to people who have “invisible” illnesses. I found out, only this past year, that a person I’ve known and called a friend (and he IS still a friend) for the last 6 years has Crohn’s. I was shocked. His diet would never have given him away–at least not around others. I guess misery loves company. I guess he thought hubby and I would leave him flat??? He has always known about MY illness. I hugged him and chewed him out for not telling me sooner. LOL But you know what? I’ll take it! Because we can understand what each other is going through.

As for the “summer flu”. I’ve gone through the symptoms of this several times in one summer. My fibro, when I’m stressed enough, loves to mimic the flu in any way, shape or form. I’ll have all the symptoms of it except one–a fever. But then, again, my normal body temp is lower than most everyone else’s. So, I might have ran a slight fever. My fibro is so good at mimicing other illnesses, at one time my doc was convinced that I had Lupus or possibly MS.

{{{{Gentle Hugs}}}} irishgramma, I hope your flu gets better soon and you can get a handle on living with everything that ails you. I hope we all can! As one of my maternal great Aunts used to say (and from your name, I think you’ll understand what I mean :grin:) when it comes to your friends, “Get your Irish up about 'em!” If they left, they’re not worth thinking about. But we’re here for you!


And that is exactly what we need, people who understand, many simply don’t. We can try and educate but often others just aren’t listening. When you find someone who can actually comprehend the realities of it all, keep a hold of them, they are rare.

Merl from the Moderator Support Team

Big hugs for you irishgramma! We all understand what you are going through.

I struggle to maintain friendships. I spend a lot of time resting, so I avidly write cards to friends, a subtle reminder to them that “I’m here, I’m still alive!”. It’s not always easy to find something to write about, but every possible holiday, I’m writing cards to friends. I’ve given up expecting to get invited out, because 9 times out of 10, I have to cancel.

I live with my adult daughter, who has a BSc in Psychology. She’s supportive (emotionally) and she can always talk me through a problem, but even she gets empathy fatigue. She has never been someone to do housework and my diagnosis didn’t change that. I still have to push through the pain to keep the house clean at a minimum level. But still, I’m grateful for the amount of sympathy I receive from her. And I am so sorry your husband and son are not able to give you the help and empathy you deserve.

As mothers, I think family have a difficult time accepting that we can’t be the “do it all, clean it all, cook it all” mother that we used to be. They keep hoping we’ll just get out of bed one day and suddenly take care of everything like we used to. Our role was always to keep going, even if we were sick. (I can’t count how many time I was sick with a flu and still cleaning a bathroom or cooking a meal.) But we can’t anymore. Everything has changed and its not fair.

I am familiar with the summer flu. I’ve had it a few times. It sucks. I recently caught whooping cough (can you believe it? I thought I’d been immunized to it!) . I find with fibromyalgia, you have to get ready to have unbelievable things happen to your body. I never know what is going to happen next.

I have no idea how to make new friends. I came to these boards because I can’t maintain friendships and I can’t make new ones. So here I am, looking for on-line friends who understand what I’m going through. I think that’s why a lot of us are here.

Take care irishgramma. We’re here for you.

Hello everyone
We had an interesting article in our weekly newsletter a while back which echoes exactly what you are saying:
Chronic Illness and Friendship
Well worth a read, I think!

Good link. The article doesn’t mention that, not only do symptoms and unexpected doctor’s appointments affect friendship, but lack of money does as well. I make less money (due to unpaid sick days) and my expenses have increased. Suffice it to say there is no money for lengthy dinners at nice restaurants. I can’t, economically, keep up with them.