struggling to attend birthdays weddings ect

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broadband

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Hi to everyone , reaching out for advice , its killing me inside that i struggle going to my friends wedding and other big birthdays coming up, i feel awful for my husband , it stresses me out to be honest soo much pressure .
 
Hi @broadband, I just wanted to let you know you're not alone feeling like this. I have also felt the same at times, and I know how hard it can be.
I'm now at the piont in my life where I only have people around me that try and understand if I can't do something. And although it's difficult if I'm not living up to everyone elses expectations, they've learnt that's the way it is!

If people care about you, they will understand that at times you can't attend these big occasions and need to go at your own pace. I usually explain that I'm not feeling up to it and find other ways of showing I still care with messages, texts, gifts etc, which usually works and shows I still care, even from a distance.

The pressure you feel will affect your fibro and no doubt make you feel worse, but please try not to feel like this - the blame is on the fibro, not you.

I have good and bad days, which is affected by a mixture of fibro and anxiety/depression. But on all these days, I now live how I want to live, not how others wish me to. My life may be simple to some - pottering around my garden, spending time with family at home, or the odd meal out, a gentle stroll around the shops on a nice day, and my daily routine of self care - I'm not as busy as I once was, but I'm at my happiest now, as I've thrown away all the pressure you speak of.

As I say, I know how hard it can be, and everyone's life is different. But your health is more important than a wedding or a birthday. And I'm sure the people celebrating these occasions would rather be doing so, knowing you are taking things at your own pace and not struggling to attend.

Hope that helps in some way broadband. 🙂
 
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Hi broadband,

What fimi says is true......except that what is also true is that even people who do truly care about you do very often do not understand at all, and sometimes will give you a hard time or will have negative thoughts about it, thinking that you are exaggerating or malingering, or something of the kind. Even those who love us dearly will lose patience with us, will have a hard time believing that we feel the way we say we do when the doctors cannot find a specific cause or disease, and when on the outside we look normal. So it's not really true that those who care will understand.

That is what is so difficult. You feel as though if someone cares, they should get it, but because they have no frame of reference to put this into their own experience, they don't. And they cannot, really. Without experiencing some things it is impossible to understand, and without that understanding it is hard to accept that it is true when another person tells you something that doesn't have direct evidence you can see.

My approach is that when I am dealing with people who are not close to me, I just tell them the facts and if they refuse to accept them I have less interaction with those people. I don't get angry (I figure it's not their fault if they can't grasp it) but at the same time I am not going to let them give me a hard time. Similarly, I don't permit myself to give myself a hard time! It's not my fault or my doing, either. And the more you stress or feel bad about not doing what you planned or what someone else wants, the worse you will feel physically.....you will actually make yourself sicker.

With people who are truly close to me, I explain as much as I can, answer all their questions, and see what they can accept. Some truly accept it all, others won't, even if they love you. Those are the hardest to deal with. I have ended close relationships because the other person refused to simply believe what I was telling them, and gave me a hard time for not being able to do what they wanted when they wanted. Those relationships turn toxic for you if you don't remove them from your life, as hard as that may be.

For yourself, focus on your own program of self care and your own treatment for yourself, finding out what works the best. Use your energy to work on feeling better rather than beating yourself up for what you cannot do, and you will find in time that you will be able to do a lot more.

For suggestions on how to get started on your own best personalized management plan, see my post:
 
You're welcome broadband.
People close to you may not understand why you're suffering like you are, but as I said, if they care they will understand you need to go at your own pace. So don't feel bad about saying no!

Sending hugs to you too x
 
You hit the nail on the head. The thing that so easily torments me is that I am letting other people down when I decline to attend events. I get EXHAUSTED by extended social events and often groan when I think about attending.

It's true most people will not understand. I have to let go of wanting them to and instead be grateful when they are willing to take me at my word. Even the ones that accept me at my word I still feel bad when I decline. But, this thought helps me overcome that: if the other person knew exactly what they were asking me to do-exchange feeling 3/10 for 1/10-they would insist that I stay home. In fact, they would be upset with me if I didnt!

I would NEVER ask someone to feel like crap so that we could hang out. And neither would most people. I have to keep reminding myself: if they knew what effect this event would have on me, they'd totally insist I stay home.

My biggest hurdle is self-inflicted guilt now. It's getting better. The more I make decisions consistent with my needs the more I want to. The dividends are there! I made this little meme to express how I used to perceive things.
 

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So it's not really true that those who care will understand.

I agree, people will find it hard to understand if they have not personally experienced it. But to listen to you, to try and understand what you're telling them, and help when you need help, in my book those are the people that really care...

...although these people can be a rare breed, which makes them all the more special.
 
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Plus: the docs/specialists don't understand it - a doc 'feeling overwhelmed' is a pointer to fibro (2022 UK guidelines).
And moreover I don't even understand much of it myself - maybe never will, even if they do come up with evident causes. One minute I'm semi-OK, next it starts up, but if it'll take my body an hour or 5 to cope is difficult to distinguish as well as if it's worth it. The invisibility is a challenge. A recent small study demonstrated the bewilderment of patients.
So "accepting" it is a big step, a decision to take. Not just for us, for others too.

My guidelines for everyone around me are: Anything over an hour or outside of 11 to 6 is an Iron:wo:man challenge.
If I want to be anywhere much longer than an hour I will need space and peace alone to recover every half an hour, or count me out the next few days.
 
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