Getting my husband and friends to understand and learning to say no?

[MariG]

I'm struggling to tell my husband how tired I am. My youngest son who is 8 wanted trainers on Sat so I asked if whe could all go but he told me to go with the two boys. I drove 30min to shops and went to Tesco for a few things , but because I was so tired I drag my feet and make a quick shop a long shop. By the time I came home it was supper time. Did some frozen burgers quick And then went straight to bed.I knew if I told my husband how tired I was he would just tell me angrily "go to bed then!" he came to ask if I was ok but that's it no caring remarks! Sorry going on I know i'm at fault as well not telling him how I feel. I've also found out a down fall in working part time. People think you've got plenty of time to help out with afterschool activities! But i'm so tired!!

[Hidden]

sorry to hear your having problems there is a wonderful poem explaining called The Spoon Theory( i think its ment for lupus but fms havers find it useful)

I am sure you can find it on google or here if you try its a nice way of explaining to people ...

try shopping on line i get my food delivered its quiet easy after the 1st time .. dont forget its easy to do things for others but you can also put yourself first and ask others to help you ...

I can imajin its hard i used to feel so bad when someone knocked the door and my son answered it and told who ever mums in bed (in the afternoon ) as time goes on i learn so much not to care

please feel free to off load on here and maybe your husband could read some of your replys or other coments ??

gentle dyslexic hugs

[Hidden]

So sorry to read your message Mari, I can sense how exhausted you are! I remember feeling like you do, it's not really tiredness but complete exhaustion. I always think if I am tired there's always that little bit of energy left that I can pull out of the bag, but when we have Fibro, we are exhausted and there is nothing to pull out of the bag. During my first year with Fibro, my hubby and sons didn't understand at all how I felt and what exactly Fibro, ME/CFS was and it can feel quite desperate can't it.

To help my hubby, family and friends understand how I felt, I found showing then The Spoon Theory so helpful. I have copies and pasted the info below from one of this forum's blogs. Click on the link for the info to show them, I really hope it helps you as much as it's helped me and many others too -

"No matter what chronic condition you have, if it is one that is invisible it can be really frustrating when your friends, family and colleagues turn round and say "but you don't look sick"!

This article uses spoons to describe to others how a condition affects your daily life and help them to appreciate how hard it is for us to struggle with our conditions".

butyoudontlooksick.com/...

[Hidden]

Mari, the link takes you to a site, then you have to type in the search bar "The Spoon Theory" and it will come up for you. If you are able to print it off, then you can show hubby and everyone. I hope it helps you as much as it's helped me in the past.

[Hidden]

hi so soory you are feeling this way have you ever really sat your husband down and really told himwhat fibro entails etc ? if not why dont you show him the site so he can read a few blogs and see that it is not put on as i really do feel sorry for non fibro sufferes as unless you have this i dont thinlk you can really fully get how bad it is so dont be too hard on him

i think we are all guilty of when someone says are you ok we go "yeah fine thanks " when nreally we are struggling but why dont we say no actually my shoulder hurts i only slept 2 hours last night and my legs are like jelly ! how many really do say that i bet none of us so if we all keep saying yeah fine no onwe is gonna relaise how bad we are

by the way i am the worst for it as my blog weekend shew you i went on the wii with my little grandsons for 10 mins and i prob look loike i ran the marathon sunday

so try to start to show hubby and family alot of literature or stuff on internet

love to you diddle xxx

[MariG]

Thank you all for the lovely comments I feel as if i've had loads of hugs x sorry about the moan but feel a little better after getting it off my chest and the kind answers thank you all x x will take it easy in work today and wps after school club with highschool girls!

[lyn-elliott]

Community blogA Letter from Fibromyalgia..........

Posted by ando_warrior 2 days ago14 commentsReportMike Smart posted this on the FibroAction facebook page and had to share it with you............

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.

Have a nice day!! (ROFL),

i found this poem on this site maybe your husband will read it

love and gentle hugs lyn

[jazher]

Hi there marieg,

My partner, i love him to bits and he is a brilliant dad, but he has no sympathy for people, he is not very good at looking after people and finds it hard to cope if i am crying.

He phones every morning to see if i am ok and if i managed with the kids but thats about it. I have to ask him to do things, which then means me asking him constantly which i feel bad about. He doesnt just take initative to do something for me, which i so wish he would. It would be lovely if he would just say, i have done this for you.

If he did more and thought about me more i wouldnt be as ratty with him.

He is getting better so i am hoping in a few years he will be even better lol.

hugs, kel xxxx

[MariG in reply to jazher]

Hi many thanks for your reply. You have made me think about him as well really, yes it isn't easy for them either to always understand so maybe I should forgive him. ( a little!) there you have made me smile x

[Ermintrude75]

Sorry to hear that MariG.

I mind reading on here that someone wrote their other half a letter/email explaining everything.

I had full on fibro for 9 months before I was diagnosed( Id suffered tiredness and aches and pains for years but could always explain them from doing to much etc)

Id tell my husband how I was each day. When Id been to see the rheumotologist they gave me a pamphlet on fibro which I gave to my husband to read. Its helped him understand what Im going through. x

[Brujah81]

Hiya, I struggle with my other half and hes a nurse, he understands my fibro and even helps run a support group but he doesnt get how i am actually feeling most of the time... just the symptoms if that makes sense ... yesterday he was complaining that i dont do the ironing.. i am stuck in bed most of the time and have two carers.. i would LOVE to be able to things like the ironing!!

I think our partners/husbands just forget what our limits are they try and remember us when we were "normal". Geez they dont seem to understand that we would do anything to be that way. They seem to lack sympathy some of the time.. sometimes they get it sometimes they dont.

I understand it must be hard for them too i just wish that they could understand truely to know what we are going through maybe have fibro just for an hour..

I think the only person who undersands truely how you are feeling is someone else who has what you have... i have learnt that recently

Love Kelly

[fairycazzie]

Ohh Mari, think you should sit your hubby down and really just go full steam ahead and explain how hard things really are!! it is crippling even with the tiredness! I cannot do shopping on my own anymore.

I try!!! when they ask do i want help with packing i say noo but they see how hard i try and just help anyway..it is so hard to have you full independance taken away! I have a lovely neighbour too if i want to go out she carries my shopping she will help do anything and she is older than my mum lol ..you have to open up and tell friends and family how difficult it is because on the outside they WILL still treat you as if nothings wrong! xx

The school issues too you can discuss with the school why you do not really get involved with your problems.

Get to see if other mums can help out too with collecting or taking.

I am in a good relationship thankfully he will come home and do housework and prep tea for following day some days, do the washing, but was i still with my ex i would hve naff all help and would have to bat on with everything as i have 4 kids, 3 to the ex and 1 They are grown up now though except youngest 11yrs to this one but it can be a strain and sleep depravation can make symptoms worse!

Can always inbox if want to chat.. i undertand relationship matters.

Wooly cotton wool soft cloud huggles xxxx