Fed up of always having to cancel on people, anyone else?

I am so sick and tired of making plans when I feel "ok" only to have to cancel them nearer to the time or on the arranged day. It has happened so much lately. Some people seem to accept I never know how I will feel from day to day (or hour to hour sometimes) but others just don't. I am supposed to be going out for lunch tomorrow and out on Saturday for a family birthday but the way I feel right now it's just not going to happen. How do you stop feeling so useless, guilty, hopeless etc ??

[Hidden]

Yes Sarah, I know exactly how you feel. I lost all my original group of friends because they got fed up in my early Fibro days cancelling our girly nights! I had never ever cancelled anything before as I'd always been fit and healthy, I look back and now think they weren't true friends after all but it hurt at the time.

Our illness is invisible and unpredictable so we don't tend to know from one day to the next how we are going to feel.

I tend to get a bit panicky if I know I have to go somewhere important just in case I have to cancel at the last minute which has happened on a few occasions. I hate being thought of as unreliable. Also the invitations tend to stop when we have to cancel so many times.

All part and parcel of having a condition like ours, not a very nice part is it. I fully sympathise, I am sure we all are in the same position Sarah.

I think the best we can do is just be true to ourselves and hope that our nearest and dearest understand and if others don't then they don't really matter as they clearly don't really care about us. It's not your fault Sarah, keep telling yourself that. You do the best you can, seek comfort in that.

Bless you! (((hug))) xxx

Libs

[Hidden in reply to Hidden]

Thanks Libs, it is just so frustrating isn't it? I also lost a lot of so-called friends at the beginning of my fibro, one even told me she didn't bother inviting me out anymore as I always cancel on her!

I also do get a tad fed up with having to explain myself to people when I do cancel - they seem surprised for some reason "oh are you ill again?" YES!! I sometimes end up sort of apologising even though, as you say, it's not our fault and I sometimes think it's not enough to say it's the Fibro/ME so I say oh I think it might be an infection - how stupid is that??

I too get panicky as I have all good intentions when I say "yes" and if I could go I would but there is a cut-off point when I feel really bad and just cannot do it.;-( xx

[Hidden in reply to Hidden]

I completely understand Sarah I think this is a common feeling for all of us. xxx

[Extremelygrumpy]

I have to cancel nearly all the time, I wouldn't be going out tonight but it's my son performing so will get there no matter how it may make me tomorrow ... Fortunately I have had fibro so long everyone knows I may not be able to make things and just say come if you can... It upsets me more than them .. Cos I miss out on fun things

VGx

[Hidden in reply to Extremelygrumpy]

I have also had Fibro/ME for years (14 to be specific) so you would think some people would understand that.

But there are times (not many) that I probably seem well to them as I have managed to attend a meal or something but they don't realise the effort (mental and physical) it has taken for me to get there and yes it upsets me too that I miss out on things but feeling like I do I wouldn't enjoy them at the moment xx

[beth2]

hi sarah I am the same as you and all of the above I was due to go out last monday but had to cancel one of my friends in our group always asks me and I do think that if she did not ask the other two would not ask me anymore I read all the blogs on here and I dont know what I would do without this site there was a time when I would be up like a lark now I have a job getting out of bed everyday sorry to moan thank god for online shopping and I am lucky my husband & son are so good with me we do have days when we dont get on but I dont think anymore goes through married life without a crossed word take care love beth xx

[Hidden in reply to beth2]

Thank you Beth but sorry to hear you're in a similar situation, I still find it hard to let go of the past. I used to be out all the time, was very social and loved a night out (mind you I was younger then), but now in my 40's I'd much rather stay at home where I feel safe, comfortable with my hubby because I don't have to answer to anyone or explain myself to anyone, take care xxx

[fibropixie in reply to Hidden]

Hi Sarah, I feel the same as all above, the trepidation before an outing or day at work makes me really stressed to the point of having a panic attack. Most of my recent plans have changed at the last minute. I used to be out all the time seeing bands and socialising, taking phtoos, but it's just so draining now. Even animated conversation has taken a back seat as I can't take the pace!! Loud voices and pubs can be overwhelming. I prefer to socialise at home and ask my good friends round - they see me in all sorts of states but it feels ok now. Hope you all have a pain-free or pain-reduced good day. xx

[adapting in reply to fibropixie]

i can so relate to all of this, anticipation creating the pain ect

animated voices grate me to the extent i want to become violent

[beth2]

that sounds just like me sarah I Am in my 40's too take care love beth xx

[ArctoLindy]

I have a small group of friends who persevere with me though I sometimes wonder why! They all work full-time so arrange evening meals out every once in a while, as I don't drink, I like to volunteer to drive when I can so my friends can have a drink if they want to, so I feel even worse if I then let them down at short notice. It happens so many times that I'm surprised they haven't given up on me, but I'm glad they haven't.

[Hidden]

I never go out the evening, this is very sad as if I did I would

Be looking at the clock and thinking if I was home I could go

To bed now.

As for day well you have to explain to people that you may not

Be able to see them it's not nice but part of your life now I am

Afraid.

[Hidden]

Thanks everyone, I've had to cancel this weekend's plans so feeling a bit down.

[adapting]

yes i felt like that 3-4 years ago when i kept getting so ill, the fatigue was overwhelmong. i used to feel panicky about making arrangements and still, i don't meet any one solo unless they are really close and know the score, that i might leave after 2 mins. if you arrange to meet 2 or more people it won't impact their outing or make you feel as bad because you are not leaving them alone. they can carry on the plans.

the thing that is a constant wether i'm in great pain or not is noise and light, so many things i havn't gone to. this problem means there are many things i just cancell out myself and don't entertain the thought of going to.

i was only diagnoised very recently so i didn't have an explanation either other than i couldn't deal with the enviroment

[Ozzygirl64]

It is very rare I cancel anything these days. I am stuck in the house for so long that it gives me reason to get out. I tend to go no matter how bad I feel and whatever it is. Normally if I have to go anywhere then I have my MP3 player and I listen to Ozzy which keeps me calm and in reasonable control of things. I find it helps a lot too, but ATOS took that as I could hear perfectly well!!!!! lol. I hope you manage to keep to some of your things as you go along xxxxx

[guineapig]

Hi Sarah, yes I can never plan anything either, had fibro for 14 years ever since hysterectomy at 30 and have polymyalgia rheumatica , herniated disc and spondlyosis of spine now 43, getting lots of head aches at present as well, take care HAVE REST its the only thing that works x

[Hidden in reply to guineapig]

Hi Guineapig

Sorry to hear you're suffering too, but I'm the same age and have had ME/Fibro for the same amount of time as you, it has definitely got worse over the last 4 years and I cannot go out to social events when I feel really bad, saying that I feel really bad most of the time..............I think my family understand to a point but I don't have many "friends" left due to cancelling all the time etc. Take care xx

[tettridge]

Hi All

Like a lot of you I have dropped virtually all socialising over the years and the only friends I have now are the ones I have made in the last few years as all my others have disappeared over the years and my new ones understand how I am now.

The first thing to go are the best things, the days out, the nights out, the physical hobbies etc. if you can try to keep these as much as possible and let your friends know how you feel and why if you can't make it, how upset this has made you etc. if it is possible for them to let you know how it was and then perhaps they can realise how it makes you feel missing out on these things, because it is not fun being in pain and sometimes being housebound and not being able to enjoy yourself with your friends and family.

You don't want just keep cancelling or even just not turn up (because it is to painful to even pick up the phone) without letting them know the real reason, let them know you are in pain and they will try to understand. Not that I have done this but because I have not done this that I feel I should have perhaps done things differently (20/20 vision in retrospect)

Kindest regards

Terry

[TIDDLYF]

looks like we all have the same problem. I have lost all of my so called friends because i always say no at the last minute and its really sad. I was thinking just the other day, i havent even been invited any where for ages. Theyve all stopped bothering! I know it is annoying when people cancel last minute but surely if they were friends they could at least phone to check if im up to it.

That is the only advice i can give. When asked to go somewhere dont say YES say id love to but it depends on if i am up to it. That gives them the chance to ask 'what do you mean by that' and you can explain about your condition and then they may be more understanding if you do then have to cancel. Also dont cancel unless you really arent up to it. You will feel a lot worse once you realise there are no invites coming your way.

Trust me because hindsight is a really great thing.

[Ilybob]

It is frustrating, but we also have to consider our friends' point of view. They set aside time to spend with us only to have us cancel over and over. I can hardly blame them forgot wanting to make plans anymore,I would do the same thing. Regardless of the reason, or whether or not we have any control over our cancellations, we have to extend the same compassion and understanding to them that we want them to extend toward us. It is rude to cancel last minute, and doing it repeatedly WILL cause us to lose some friends. They may even understand we cannot help it, but that doesn't change the fact that it is just as frustrating for them to be cancelled on as it is for us to have to cancel. Some people are naturally more compassionate than others and will remain friends, but others will move on. That doesn't make them bad people or "fake friends", and by judging them thus, aren't we just as guilty as they are by not having any consideration for how our cancellations affected them? I finally stopped feeling useless and guilty (and sorry for myself) when I started looking at how my actions, whether I could help them or not, were affecting others negatively. The world doesn't revolve around me or my pain. Things are the way they are, there is no blame to be assigned on either side.