My family don't understand!!

All your fibromyalgia experiences, questions and answers.

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Re: My family don't understand!!

Postby FluppyPuffy » Tue Jun 18, 2013 1:56 pm

Glad you've decided to go on the family weekend :blowkiss: :blowkiss: :blowkiss: :blowkiss: It may turn out to be far better than you're expecting :fingerscrossed: :fingerscrossed: :fingerscrossed: And with the weather hopefully getting a bit more summery, if anyone does try to make you feel embarrassed or guilty, it should be warm enough for you to :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: at them :lol: :lol: :lol: :lol:

As for the comment your hubby made.......sometimes there isn't an awful lot of thought put into what they say, esp when they are trying to deal with worries about us :hugs: :hugs: :hugs: :hugs: :hugs:
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Re: My family don't understand!!

Postby LouLou » Tue Jun 18, 2013 2:08 pm

PK I'm glad you seem a bit more optimistic than your first post. I agree with Fluppy that the weekend away sunds like a great idea. We may be in a lot of pain all the time, but with a bit of pacing you can achieve a lot.

Make sure you rest up before and after your weekend and I hope you have lots of fun with the kids and that the weather is great for you.

Don't let anyone make you feel bad about having FM!

Take care
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Re: My family don't understand!!

Postby Fibro Fi » Tue Jun 18, 2013 8:35 pm

Hi there!
This is certainly a topic I keep debating in my head. Should I expect them to understand, yes or no?

I had a proper chat with my immediate family ie, hubby, son and daughter. I think since I've been officially diagnosed they understand better. I also think the main problem to their understanding was me! I believed that they wouldn't believe me. I believed, that they would think im exaggerating or putting it on, but as it happens, when I eventually spoke openly about it they didn't feel like that at all. I'm not sure the rest of my family understand as they don't see me in the state my husband and children do, and this goes for friends too.

Just recently I have had a friend defriend me on Facebook. As she won't tell me what I've actually done I can only presume it is because I havent turned up to three social occasions recently despite giving my apologies. She has also told another friend of mine that I don't make enough effort. Now this lady said she understood fibromyalgia as she has another friend with it. Well, clearly she doesn't understand what this illness entails which is okay as it affects people in different ways. What is upsetting is that she's jumped to conclusions without giving me he opportunity to explain. I have emailed her to try to sort it out but her response was a definite cut off. I've found this very hurtful and it is the worse reaction Ive had up until now. It's just a shame that family and friends can't climb into our bodies for a day to experience what we do evey day!

I think it really helps if the people you live with can understand your illness, but I do ask myself why do I have the need for others to understand? Why can't I just get on with my life with its limitations, be firm and say no when I need to, but not feel the need to explain myself or to get others to understand me? This is the place I want to get to and to not care about what others think. Hopefully, one day I will get there.
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Re: My family don't understand!!

Postby pkd1272 » Wed Jun 19, 2013 9:38 am

That is so true!! Who is making me feel embarrassed that I am in pain or feel guilty that I cant join in things. No one actually says anything and its sadly me creating this feeling. My sister does unfortunately look at me with complete disgust when I stand up and cant walk after sitting in an unsuitable chair but never says anything. I would rather she did say something because then I could explain why. Sadly if I said something my parents would then defend her and accuse me of causing trouble or making a fuss for no reason. My sister was a late surprise and my parents have spoilt her rotten and she can never do any wrong. I put earlier that I will go and they have to except me but I think that I learn to need to accept me first and become stronger and braver and stand up for myself. Its not our fault we have this illness or our fault that people don't understand because it is not well known. If we had something well known people would maybe understand more. I don't know, its all a daily battle dealing with the pain and the emotional pain that comes with it.

I am so glad I have this site that I can talk to people who understand me and know where I am coming from.

:-D :-D :-D
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Re: My family don't understand!!

Postby LouLou » Wed Jun 19, 2013 10:58 am

Fibro Fi

That is awful what that so called friend did to you, but clearly she can't have been much of a friend in the first place. We shouldn't have to explain ourselves all the time but unfortunately FM isn't as widely known about as pther illnesses, and until people are better educated and there is more awareness I think this will continue for a while yet.

My family are really understanding, especially my mum, dad and OH. They are the only ones who have seen me at my worst with FM, where I have literraly been curled up sobbing asking to die as the pain was that bad, so they get what I am going through. My sister had a bit of a problem getting it and for a while wouldn't ever ask how I was or anything and if my mum brought it up with her she would change the subject. This really hurt me at the time but that was just her way of dealing with it I guess. It hasn't been until the last month or so that she has begun to understand what I am going through.

She now asks how I am, she even told me she was so proud of me when I managed a shopping trip to get bridesmaid dresses a few weeks ago! Her OH was at ours Sunday with my OH to play football and I was having a really bad pain day and was crying on the sofa. he saw this and within an hour of him getting home my sister was on the phone asking if I was ok and that she was worried.

I think with some people it can just take some time to get their heads around it.

Fibro Fi wrote:It's just a shame that family and friends can't climb into our bodies for a day to experience what we do evey day!


Oh how I have though about that so so many times lol, not to be nasty or inflict pain on anyone else, but unless you feel what we feel then I think there is only so much understanding people can give you.

PKD I'm so sorry you are having problems with your sister at the moment. I really hope that given some time she can come around like mine, but you don't need to justify yourself to anyone.

It's taken me a long long time to get used to being a bit selfish and say no to things I know I can't do or know I will sturggle with, and even now I'm still learning.

In the meantime you have all of our love, support and understanding on here
xx
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Re: My family don't understand!!

Postby whoami » Wed Jun 19, 2013 11:38 am

Do not take on somebody else's inventory........It is none of your business!

I am not being rude to you all, LOL My Dr told me this once. It took me a moment to figure it out but what he meant was ....what other people think is their problem not yours. Don't try to understand them, there is no need.

Even after 24 years I have family that don't believe me, or don't want to. It could be the latter. They also don't believe the over 25 trips to the O Room, the infections and healing issues. They don't believe I had a stroke but called my room in the hospital, only to find it hard to understand me. They do not believe I had my thyroid removed due to cancer.

Do they actually believe I am here, LOL....oh yes they do because they sure can talk to each other about me, LOL

My dearest uncle passed away but about a year before he told me to get on with my life and not worry about them. He also said, you will never win so don't waste your energy trying. I do miss him so.

Anyway.....We have fibromyalgia.....We do not owe anyone an explanation....We do not have to justify ourselves.

We are not fibromyalgia.....We are in control of our lives not fibro controlling us.

We are loving, productive people who deserve respect.


We can only educate people about fibro.....what they do with the information is up to them!


Sorry about the long post.....I tend to make a short story into a long one quite easily, LOL
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Re: My family don't understand!!

Postby Iceskatemum » Wed Jun 19, 2013 1:30 pm

Its a similar story to many of us I'm in tears here due to pain and lack of family understanding or support. Don't know if or when they will understand and when feeling rational I know its their problem.
Sometimes however just a hug and a little TLC is all you need to get you over a blip.
Sorry if taking over your post but could think to open new thread
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Re: My family don't understand!!

Postby FluppyPuffy » Wed Jun 19, 2013 2:52 pm

Sending a few :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: as well as some [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] to you ISM, as well as some :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: for hugging :blowkiss: :blowkiss: :blowkiss:
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Re: My family don't understand!!

Postby Iceskatemum » Wed Jun 19, 2013 5:20 pm

Thanks FP there to pick me up as always. :-D :-D
We have visitors coming to stay and OH "OCD" has been on overdrive .I have tried to help when I can but the wheels keep coming off both physiclly & emotionally .

I am beginning to wonder how many folk really understand this illness ?
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Re: My family don't understand!!

Postby whoami » Wed Jun 19, 2013 6:18 pm

ISM......I hear your pain in your words, sending love, understanding and hugs

Try not to fiuss too much about things being in order for company. Here I am telling you not to but I would be running around like the chicken with its head cut off. Ok....I lied, maybe not running. More like a cross between a sloth and a hummingbird. Going miles a minute but getting nowhere, LOL Both hubby and myself are a bit, maybe a lot, OCD. We have actually both watched each other to see if we are doing something right, as well as perfect. LOL

I have a great motto to live by......If you have seen my house a mess, I never have to worry again!

If I could only follow it, LOL Try to take it easy for your company coming, let OH do the worrying.
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Re: My family don't understand!!

Postby Iceskatemum » Wed Jun 19, 2013 9:36 pm

Thanks Whoami, I try and do something , my lastjob was to go through all the paper clutter and either recycle, put for shredding etc. What might have taken someone a day (we have, sorry had a messy house) took me nearly 4 days to do it ! Then the thankfulness OH felt at me trying to help has turned to dispair and I think frustration that it has taken so long.

nearly there hwever as our guest arrives on Friday (very early )

Thanks again for being there for me
:blowkiss: :blowkiss:
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Re: My family don't understand!!

Postby FluppyPuffy » Wed Jun 19, 2013 9:55 pm

I get the same when we have visitors ISM :facepalm: :facepalm: :facepalm: I want to do much more than I am actually capable of, and what I do manage to get done takes so much longer which just adds more and more to the frustrations that are always building and ultimately wipes me out leaving me able to do even less :facepalm: :facepalm: :facepalm: :facepalm:

As for OH tho, no matter what happens and how bad I get, he's always there to pick up the pieces that I end up in and sort the messes out :blowkiss: :blowkiss: :blowkiss: :blowkiss:
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.

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Re: My family don't understand!!

Postby spencebel » Thu Jun 20, 2013 9:12 am

Same here for me, none of my friends and some close family members ask how i am. My mum does but she is not in the best of health herself, so i just say i am no to bad, even though i am in agony.
OH never asks, when i say to him you never ask how i am, he replies with well i hear you groaning, or moaning. (it would be nice if he showed he cared by asking me).

I have a party to go too soon, mentioned to my daughter for her to save me a seat, (its her party) because i carnt stand up all night. She will be too busy greeting guests etc, so the best thing to do is get there early......... was her reply. :( I know should not let it bother me but it does...

So i have been thinking that if i carnt beat them ,its to join them and forget i have fibro.
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Re: My family don't understand!!

Postby LouLou » Thu Jun 20, 2013 9:46 am

:hugs: :hugs: :hugs: for you ISM

Pre Fm I was just like Monica in Friends lol always cleaning and tidying. Me and Oh have always taken it in turns or shared the housework each week but pre FM I'd often go round and do it again when he wasn't there as his cleaning wasn't "up to my standards lol" silly I know.

Now, I find that once I've finished my day at work I have to use all my spare time at home resting and getting ready for the next day. Doesn't leave a lot of time for cleaning and tidying as well as cooking/clothes washing/putting it away etc etc a woman's work is never done hey lol.

I'm much better at pacing myself these days and split the chores into days so I'm not doing all of them each day. But I do go into overdrive when we have people coming over so I know exactly what you mean.

I hope you manage to have a good time with your visitors
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Re: My family don't understand!!

Postby Iceskatemum » Thu Jun 20, 2013 1:01 pm

Hugs Spence bel , I really understand how frustrated you must be feeling . Why not make a joke out of & suggest she puts baloons /funny sign on a chair and say its just for you as the party girls mum . That way everyone know its for you and she get to great her guests .
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