fed up of explaining myself

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

fed up of explaining myself

Postby julesbray » Sat Aug 03, 2013 3:29 pm

am so fed up of explaining to my dad, who lives near me, why I can't do normal every day things. He just doesn't get it. I am feeling down and fed up with myself as it is. Then to have him ask why I can't make it to the supermarket to get milk, and the comment, "its only down the road", makes me feel like he doesn't have a clue. He has got memory problems as a result of a mini stroke a few years ago, and also he has no tact. He just says what he thinks. Regardless of how much it hurts the other person.
He is not the only person who doesn't understand how this awful illness affects sufferers, some people who I knew before this illness struck, think that I am just being lazy or it is in my head and I just have to deal with it and carry on.
I saw someone today, and i was in real pain just from walking to the shop. He asked how I was, but had a look on his face as if to say, "well you look ok so whats your prob?" I just had to try and explain that I was in a lot of pain, but am due to see the rheumy next week. I felt so fed up, here I was, talking to an 80 year old man, who has just recently had a heart op, but looked fitter than me. A 48 year old. :(
I walked home, feeling pathetic, in severe pain, and just wanted to crawl back into my 'cave'.
julesbray
UKFM Member
 
Posts: 13
Joined: Wed Jul 31, 2013 12:32 pm

Re: fed up of explaining myself

Postby Janet Poole » Sat Aug 03, 2013 3:45 pm

Hi. . I know how you feel. . It makes you doubt yourself. . I've tried to make my lot read about it but it.s one of them things that you can't get it till you've got it. . I often wonder how people coped with this years ago as there wasn't anywhere to go to ask questions or receive support. . Just keep on keeping on is all i do. . Its an evil infliction xx :hugs: :blowkiss:
Janet Poole
UKFM Member
 
Posts: 31
Joined: Mon Apr 01, 2013 8:17 am

Re: fed up of explaining myself

Postby Lemonzest2012 » Sat Aug 03, 2013 3:52 pm

I've found people have made up their mind about me no matter how much I explain, they seem to think its "an excuse for being lazy" or "bone idle" seems some bigoted people don't even want to change their minds.
User avatar
Lemonzest2012
UKFM Member
 
Posts: 78
Joined: Wed Jul 18, 2012 11:26 pm

Re: fed up of explaining myself

Postby FluppyPuffy » Sat Aug 03, 2013 4:00 pm

Sorry to hear how you're feeling Jules :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: You're not alone with this tho, most of us have had a :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: time trying to explain to others how we feel and what a day in our life can be like :waiting: :waiting: :waiting: :waiting: :waiting: :waiting: :waiting: Have you had a look at any of the things on here than can help explain things to give others an idea of what we experience on a daily basis. If not, have a looky at these linkys for starters viewtopic.php?f=2&t=4732 and viewtopic.php?f=2&t=1761 Some have found that printing info up and letting others read it at their leisure can help with spreading understanding.

WRT your dad, something such as a stroke, incl mini ones, can change some aspects of their character/lower inhibitions, giving rise to the sort of behaviour your dad is exhibiting. I'm not trying to justify what he is doing, but he could also be feeling very frustrated and worried about you being unwell but can't find the right way to get these concerns out, which is also adding its effects to how he is being.

I know it's far easier said than done, but please try not to let things pull you down. Sometimes people don't want to even try and understand what FM is and what it does to us. And there are the ones who, like your dad, just can't remember what you have told then about what is wrong :( :( :( Maybe giving your dad his own copy of some info that you can use to help explain things could help with a little of it making a little sense to him.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: fed up of explaining myself

Postby fedup2 » Sat Aug 03, 2013 4:05 pm

I know the feeling well, i now just say i'm fine as explaining it to people who don't understand is a waste of my time,I am lucky on the other hand with my family they have been amazing & really supportive,it must be really upsetting that your dad doesn't understand.
I have actually had one of my " Friends ? " laugh in my face when i explained i wasn't feeling good she asked why & got quite confrontational,i told her the Doctor told me to avoid stressful situations as much as possible, she started laughing & in a childish voice said back to me,"oooh stop arguing your stressing me out. She is no longer a friend!!!!
If people don't need to know i just don't tell them,maybe if you took your dad to a doctors appointment with you & he heard it from the doctor he may accept it & understand a bit better.
Try not to get to down it makes it so much worse,there will always be people out there who will never understand if you don't experience something for yourself it is very hard to understand it or accept it is real,if people i know ask me i just say i'm in a lot of pain today & leave it at that.
I hope you manage to find a way of dealing with others that doesn't cause you so much upset. Take Care Gentle hugs for you :hugs:
fedup2
UKFM Newbie
 
Posts: 5
Joined: Tue Jul 02, 2013 10:23 pm

Re: fed up of explaining myself

Postby liv » Sat Aug 03, 2013 4:27 pm

This all sounds very familiar.

I think what is also a problem is that as it can take soooo long for a diagnosis we question ourselves and others us (how can we really be ill if doctors can't find anything wrong with us???!!!). If you don't have much support there is more explaining to do ..... nobody does it for us.

Unfortunately we can sound as if we are moaning when what is really happening is that we are struggling.

Chin up if you can :-)
liv
UKFM Member
 
Posts: 12
Joined: Wed Jun 27, 2012 3:19 pm

Re: fed up of explaining myself

Postby Iceskatemum » Sat Aug 03, 2013 7:57 pm

Ohh the dreaded question......I usually just say something like "struggling on". You then don't have to quantify anything and folk can then return to their favourite topic .....themselves.
I think the more we try and explain the more people think we are making excuses.
As for your dad,as Flup has said a stroke even a mini one can bring on so many changes in a person.why not try giving him less info and keep answers simple when he queries how you are. Not feeling great or fatigued is a useful catch all and then just add the Dr says it will take time to treat.
All perfectly true but less complicated than our usual attempt to explain the vagueness of FM.

Good luck.
Iceskatemum
UKFM Regular
 
Posts: 1599
Joined: Thu Jul 12, 2012 4:20 pm

Re: fed up of explaining myself

Postby juju1968 » Sun Aug 04, 2013 7:31 pm

Hi, I don't know about you but a typical scenario for me is when I've explained (again) to the family/friends that I really need to just sit and let the meds do their work and I hear those dreaded words 'mum/Julie can you just do/help me with blahblahblah'. Nine times out of ten I wrench myself off the bed/couch, limp off (feeling like I'm walking on pebbles) and do my best for everyone when inside I'm screaming 'LEAVE ME ALONE!' and then go and have a good cry in the loo. :roll: Totally with you on the 'explaining yourself thing. xxx
juju1968
UKFM Newbie
 
Posts: 4
Joined: Sat Aug 03, 2013 5:59 pm

Re: fed up of explaining myself

Postby FluppyPuffy » Sun Aug 04, 2013 8:40 pm

I can assure you Julie, you're not alone with that scenario. I've been part of the club for a good number of years, and altho I have learnt a few things and made changes along the way, even now I still do the very same thing at times :oops: :oops: :oops: :oops: :oops: :oops: I'm not as bad as I was as those around me are now aware of my signs that I'm not so good and they will help/take over as needed, but now and again that stubbornness manages to get a grip, then I have to pay the inevitable price :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: fed up of explaining myself

Postby julesbray » Sun Aug 04, 2013 11:36 pm

thank you all for your helpful replies.xxxx
:-D
julesbray
UKFM Member
 
Posts: 13
Joined: Wed Jul 31, 2013 12:32 pm

Re: fed up of explaining myself

Postby Pretzelnut » Mon Aug 05, 2013 5:57 am

My mum has fibro, so she understands. However my husband doesn't, despite me, my mum, my doctor explaining to him dozens of times in various different ways. To the point that our marriage is practically over.

He's supposed to be supportive but all he does is call me lazy, amongst other things. I wish I was just lazy. I don't care what anyone else thinks or says but when your husband is against you it's the worst feeling ever.

The fibro is placing a great deal of stress when it needs to be avoided.
Pretzelnut
UKFM Member
 
Posts: 31
Joined: Sun Jun 30, 2013 9:27 pm

Re: fed up of explaining myself

Postby julesbray » Wed Aug 07, 2013 3:59 pm

My dad now understands, and is now really supportive. He came with me to the hospital today for my first appointment, and was with me as we waited over an hour to be seen, and then sat with me another hour waiting to have blood tests done. I also had to get the prescription for some steroids. Now he has seen for himself, that it is not all in my head, I think he understands. He was brilliant support for me at the hospital and made me laugh while we were waiting with his quick wit humour! :-D
julesbray
UKFM Member
 
Posts: 13
Joined: Wed Jul 31, 2013 12:32 pm

Re: fed up of explaining myself

Postby painprincess1 » Thu Aug 08, 2013 9:44 am

my dad has no tact what so ever and has left me in tears many a time. but he does understand im in pain as he to come to the dr with me . i think the best thing to do with ppl u meet is say nothing i just say yer im good thanks. and walk on.the more u try to explain the more ppl look at u like your mad.after all when u meet ppl in the st we all say hi how are u not many ppl really mean it .my grandmas 90 just gone into a home never been sick in her life never went to hospital once apart from having my mum.so try not to compare yourself with other ppl.just no everyone of us here have felt like u do xxxxxxxxxxxxxxxxxxx :-D
smiles and the world smiles with you. cry and you cry alone.
painprincess1
UKFM Member
 
Posts: 867
Joined: Mon Oct 15, 2012 1:38 pm
Location: near london

Re: fed up of explaining myself

Postby pamh » Sun Aug 18, 2013 8:24 pm

Ha, reminds me of my ex (who strangely enough is my best friend now). He could never remember fibromyalgia, so used to tell people I had chlamidia!! I was not amused lol

Pam
pamh
UKFM Member
 
Posts: 54
Joined: Sat Sep 13, 2008 12:36 pm


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 10 guests

cron