A question I dread to hear is 'What are you doing this weekend?'
What am I supposed to say? I usually try to answer as upbeat as I can, such as I'll play some games, cook something or watch some comedies, or if I'm being secretly pedantic I might say 'I think I'll have a good rest'. Yay!
And when they tell me what they're going to do, usually exciting going out type things I say things like 'Great, have a good time' etc but I'm dying inside because I'll be in bed again! And I'm jealous.
Least favourite......you playing any golf these days.
answer.....not really 2 holes is my current limit before i need to lie in a bunker.
Or.....you fancy going to a party......more excuses
I hate the ducking and diving aspect.
Georgi...i get you completely...I've had CFS for 20 years or more and I'm 32 now...I have had my good times and bad times but can relate to that feeling of envy at people living lovely normal lives, buzzing about at no cost..unlike a CFS sufferer who simply cannot or has a price to pay (that's me a lot) I'm on a huge journey at the moment to fully accept this mostly silent struggle and how it's impacted my life. I try not to envy other young women and feel grateful for my blessings but it's hard isn't it...I've had to forgo a festival opportunity myself this weekend as my CFS is just too heavy. It was a hard decision but actually proud I made it as I'm learning to listen to myself more. I'm reading this great book at the moment ' Living a life less toxic' by Faith Canter and it's all about her recovery from CFS/ME..& it's amazing!! If you like reading? I have been trying to appreciate the simple things aswell & strengthen my connection to nature I find so healing.
Sending you a huge hug from one sufferer to the next and anyone reading this. It's horrid isn't it?!? but finding this forum brings me relief of a vent and common ground as noone gets me and this illness mostly...sigh..but hey ho..continuing to find the silver lining and not giving up that I can at least improve my health in some way! Who has more tips?! Peace xx
Me too because I just can't be honest because of considering their feelings and not wanting to bring them down! And they're the ones who're enjoying themselves, crazy.
That sounds like a good book and I'll look it up, thanks! Have you read the one about 50 recovery from CFS stories? That's encouraging.
I'm middle aged and I find myself envying old people who have more of a life than I do. It's hard not to as you know, but some of the time I can be optimistic like you are, and I do appreciate simple things like the beautiful nature in my garden outside of my window and having good days etc.
I think you deserve a medal for forgoing the festival to preserve your energy, well done! There will be other ones and I'm sure you feel better for not going. Hugsies
I know exactly how you feel ....I've had ME for 15 years now and yet my brother-in-law still insists on asking me out to family parties and a meal. ... I suppose I've only told him about two hundred times that I can't cope with that sort of thing of an evening, so I suppose I can't blame him for not knowing.. 
One of these days he's going to ask again and I shall quite happily waste a week's energy, punching him on the nose... 
I always think of that episode of Porridge (set in prison for those that don't know it) when Richard Beckinsale asks Ronnie Barker whether he fancies going out for a pint and Ronnie Barker says "No, I think I'll just stay in tonight "
Having ME/CFS is a bit like that... I just pretend I'm staying in tonight because I don't fancy a night out. It's much easier to cope that way, than getting upset by thinking how little I can actually do.... 
Yeah Porridge, I wish I had Richard Beckinsale darning my socks and cooking my dinner!
I have a similar problem with certains friends who insist on phoning me up in the afternoon but I've told them millions of times not to phone me then, when I'm having my afternoon nap.
I take my phone of the hook, even for whole weekends. I should carry a government health warning: Grumpy sick person, be warned!
Hi Georgia....that one brought a smile to my face.....as that's ME too...nothing frustrates/annoys me more, than when a day comes when I can actually have that "sleep"...like today...but Forgot to take house phone off the hook, and turn of mobile....for each time that I fell asleep (and only in an hour)...both went off 3 times...so gave up, didn't answer them, but they had done the damage...so gave up, and got up....Bron
Aw I feel for you Bronwyn!
What's even worse than friends phoning at times I've asked them not to is cold calls. I get so angry with them and aways tell them to remove me from their data bases, but as you said the damage has been done and I'm too stressed to go back to sleep. Arrrgghhhh!!!!
I'm enjoying this rant! Great to let off steam isn't it.
I agree with you Georgia, you don't want to bring everyone else down do you? I hate the simple one, "how are you?" when it's just the same old, same old :-(. I try and say oh you know, up and down and smile as I say it!
Yes that's an awful one too and the trouble is that it's a question everybody asked each other all the time. No matter how many times I've answered in different ways it's always difficult.
They don't want to hear our long lists of grumbles but then we don't want to lie! Catch 22.
It's ridiculous really that we live in a society where if your ill or experiencing something out of the norm you have to put a face on it a lot of the times especially conditions that are not understood and or have stigma which only adds to make you worse/get stressed! I am realising it's do important to get seen for what your experienceing wether that be a good friend, support group etc. I have spent a good part of 20 years being told firstly by mum that how I felt was silly, putting a face on it to family because I was do scared what the hell was wrong with me, kept a mask on all these years..And fully exposing myself and yes people asking 'how are you?' is so difficult to answer truly... I've had all kinda of responses from people & you're easily judged...its such a shame..sometimes i wish people could feel into other people's feelings & wake up!! yes great to have a rant lol!!
Should have asked do you find yourself saying 'I'm fine!' a lot? I do and I I bought a white t shirt saying'I'm fine!' and underneath there's a bloody gun shot wound, couldn't resist it.
Oh, take heart Anna, it's so good to know we all share very similar experiences. I know I shouldn't, but sometimes I wish other people could spend one day living the life of an ME sufferer!!!
Ha ha Georgia - I like it (the tee-shirt). Anyway, I've had my rest now, back to the housework!!
Yes the stiff upper lip, but then why do peope bother asking if people are ok if they really don't want to know? Are they pretending to care? I'd rather they didn't bother asking unless it's a genuine question.
Me to sueliz, I thought it about a really cruel doctor and felt bad about it but perhaps it would give him a bit of empathy.
Lol, I haven't worn it though! I really should; even just to make myself chuckle.
Yep !!!.... and I guess you mean either the Prank calls/ when there's no-one at the other end??? this is the only place that I can let off my steam, really, as we all know, that when we try to let it off with others, we usually end up then having to take it back, as we have said something that they've taken personally.....can I really say what I want to say without being moderated...(it starts with b...b...b....and bb....)..now I'm feeling a bit better..ha Bron
'Other people are worse off so shouldn't you buck up!'
Hmmmmmmmmmmmm yes it really helps me to dwell on the worse suffering of others. No actually it makes me feel worse because I'm hurting for them and feeling sadder.
Thinking of people worse off has never helped me, nor thinking of people better off. We can't really compare anything that's so subjective. *wink*