New to this forum

[Jaclyn]

I feel a bit weird launching into posting about myself to no particular person, and hope I'm in the rifht part of the forum, but here it is: After reading a few other FM sufferers experiences it's helpful to know I'm not alone. Amongst the hardest thing to understand is the fact that most people I know either don't believe CFS/ME/FM are real illnesses, or if they do, they literally can't understand something that's outside their experience. A good friend cannot understand why my feet hurt so much that a visit to the cinema the other day was problematic - what did I do? - well, I hobbled for a few steps, gritted my teeth and walked as normally as possible. The problem with that? I wanted her to feel comfortable, and pretended I was okay. That's ridiculous when I think about it! I won't do that again. At present I live in New Zealand, where it's seen as bad manners to talk about personal things. My husband and I will shortly be moving back to Australia after struggling to fit in here, and in Australia it's more than okay to let off steam and vent - and often have a good laugh

 

[sunkacola]

Hi Jaclyn, and welcome to the forum.

 

[30 plus years]

I get so frustrated too with not being understood. I'm not sure how to attach a quote, but Sunkacola has had some excellent advice on this, and it has often needed to be repeated, because acceptance can be super difficult. One such post was on October 7th under "Moan Complain Vent".
Also, always remember stress is our biggest enemy.

 

[sunkacola]

@30 plus years , you can attach a quote by going to the place where the quote is, and doing a copy-and-paste into your post. Or, if it is a quote from the same thread you are posting in, you can just highlight those words in someone else's post, and then click on "Reply with quote" which will appear below the words you highlighted.

 

[sunkacola]

Amongst the hardest thing to understand is the fact that most people I know either don't believe CFS/ME/FM are real illnesses, or if they do, they literally can't understand something that's outside their experience.

I think that it's important to remember that your friends are not deliberately failing to understand.........they literally cannot possibly understand.
Imagine that you know someone who lost both their legs in an accident. Could you actually understand what they were experiencing? The pain, the adjustment, the loss and grief, the fact that they are no longer the person they used to be and it's permanent? Of course you couldn't.

You could be supportive, listen to them, believe what they tell you, ask them what helps and what doesn't and then do the things that help, say the things that are helpful, and treat them in the ways that work best for them. You can be a very good friend to them. But you won't ever be able to understand what they are going through.

I find my life is a lot easier since I learned never to expect anyone to understand. I assume they won't. And that's OK. The only thing that I demand of the people who are going to be around me is that they don't do anything that makes my life harder.

they don't have to offer to help, they don't have to ask me how I am, and I don't ask them for anything. But if they are going to fail to believe me, give me a hard time if I am forced to cancel or change plans, or in some other way make my life harder, then I simply cut them out of my life. I do not have the energy to deal with people who make my life harder. It's hard enough as it is.

 

[HighMaintenance]

Welcome to the forum but, I'm sorry that you had to join us. Hubby and I are retired and I attend a Bible study every Tues. My girls all know about my fibro and battle with bladder cancer but I know that they don't "get it." Not their fault because I'm always smiling, I participate in every class study and always try to look my best. Inside my body a monster slithers, waiting to strike. I'm almost always in my pj's at home. My hubby has always taken perfect care of me and does the bulk of everything at home. We're on vacation right now and there are 2 floors of steps.
Sorry...I didn't mean to go on and on. Just know that you are never alone.
Beverly xo