Fibro confusion

[Namtox]

How many of you lovely people get so frustrated when you are having the worst day by feeling really down and full of pain and someone tells you how well you look. Inside you want to say how you feel but you end up thanking them whilst thinking if only you knew yet questioning in your head “are you just saying that to make me feel better” on a positive note with Fibro fog I never get board because I forget what I was up to and start again

[Hidden]

Hi,know the feeling well, and I love your positive point about fibro fog 😊, it can be a bit like the film groundhog day .

Take care and hope you get some sleep 💐

[Namtox in reply to Hidden]

I went from working 60hr weeks 14hr days and nights to being at home every day. I haven’t worked for 14 months and I’m not board. But your right it is like ground hog day and night lol

[Namtox in reply to Namtox]

I don’t find this illness fun but I do intend to make the most out of it, by not doing shift work is a good start.. where are you with all this

[Hidden in reply to Namtox]

I know what you mean it can get boring you try to do something but your body says are you joking!! mine you it can be amusing when you put something down and don't leave the room only to go and pick it up and poof not there spend five minutes looking like a mad woman then stop and tell yourself its here somewhere, once lost my phone only to find I was sat on it.

You worked some long hours it must be strange for you and you've got a lot to adjust to with all the changes.

Hope you get some💤💤night .

[Namtox in reply to Hidden]

And people moan about going upstairs to find they forgot what they went up there for.. I forgot what I was going to go up there for.. it’s never dull..

[Hidden in reply to Namtox]

Yes, that's me too!!

[Ladame in reply to Hidden]

If only people realised how much effort it takes to try and look "normal!" Whatever that is! !!😂

[Namtox in reply to Ladame]

I forgot what normal is, I used to plan what I was doing the next day. Now people don’t quite understand when I say I’ll let u know tomorrow. One thing I do know is that the first 2 hrs of being awake is when I’m at my best.

[Hidden in reply to Namtox]

Ohh, god you're luckier than me can't remember when I've been at my best, I've learnt never make plans for the next day unless I have to with appointments.

Hope you enjoyed last night's fun 🥳🥳.

Oh I don't do normal much I do daft!!!.

[Hidden in reply to Ladame]

Forgot what normal is 😄, and as for sleep uhh what's that????

[Hidden in reply to Ladame]

Hi, and welcome 😊.

[Namtox]

Lol I could have so much fun in a dark way.. I struggle by questioning whether I’m feeling ill or am I ill even ill tho we all know our own body

[Namtox]

Your right there 🤐

[Namtox]

It looks like it’s just us awake whilst everyone else is having sweet dreams

[Hidden in reply to Namtox]

Yep I think I've forgot what sleep is my sheep are always going on strike or falling asleep on me I'm around most nights wondering what sleep is

[LoneEra in reply to Namtox]

Not just you 🤣

[Hidden in reply to Namtox]

Surprise surprise, it's me again!! Not sleeping as per usual?!

[Hidden]

Well I know I am what you got in mind

[Namtox]

Always for a giggle.. what are sheep ?

[Hidden in reply to Namtox]

Sheep are funny little things, as in baa baa black sheep the nursery rhyme, the site UK but we have members from the USA all over,

[Namtox in reply to Hidden]

Either I have forgot how to count or my sheep are on a bus mans holiday.. That’s good to have a range of backgrounds.. I’m from essex

[Namtox]

Is this a Uk site ? I’m assuming it is and everyone is from the Uk

[Namtox]

I can’t view this. It could be my phone

[Hidden in reply to Namtox]

It's very good, though!! Xx

[Namtox]

Seen it now .. did u know Lady Gaga has fibromyalgia?

[Hidden in reply to Namtox]

Really - how on earth does she cope with yours and all that moving about on stage?

[Namtox]

Like wise.. a mind full of useless information

[Painny in reply to Namtox]

Honestly ....could not stop giggling, for a minute I thought he/she knows what I have in mind 😁😁😂😂😂🙃 useless information 😉😍

[Namtox]

That’s was amazing.. I couldn’t open yours.. again it be me

[Hidden]

Zoonie is also are DJ !!!!,he does a good crazy welcome to the mid night madness it helps get though the night oh do you know are your sheep going anywhere nice?🐑🐑

[Namtox in reply to Hidden]

He.. what there’s another male out there that has Fibro ?

[Hidden in reply to Hidden]

Yes, I agree!!

[Namtox]

I like that

[Namtox]

I’m 49.. my rheumatologist apologised that I was male and had a syndrome that women get lol.. I don’t think it has a preference lol.. but I haven’t found another male out there so far

[Namtox]

80’s

[LoneEra]

Yeah, but you two are having a love-in...I might have to leave 😂❤️❤️❤️❤️😂

[Hidden]

Well if Lynne was here she'd say Meatloaf, hope she's getting some sleep, inspiration needed pass next question please anything you've got good taste

[Namtox in reply to Hidden]

Eurythmics

[Hidden in reply to Namtox]

Good choice

[Namtox]

Wow. I love but have never seen that video

[Namtox in reply to Namtox]

*Muse

[Hidden]

Now I can't play that video ☹

[Hidden]

Hi

Yes, I know what you mean. When we bumped into a couple of friends a few weeks ago, they asked how I was so I said not so bad!! Hubby then stepped in no, tell them how you really feel which is s*** and then he told them how I was really feeling!! Take care e

[Namtox in reply to Hidden]

And that is so true.. it’s easy to say no I’m having a shit day but then we’re seeking sympathy so we say no we’re good and it’s ok.. I would like to say it’s because we’re English but I reckon everyone is like that worldwide

[Hidden in reply to Namtox]

I could understand where hubby was coming from, though. At least he tries tob understand this crazy illness. He's my rock

[Namtox in reply to Hidden]

Wish I could say the same my partner ran away as she couldn’t understand the changes from day to day.. on the positive side, I have less stress

[Namtox in reply to Namtox]

At least now I can stay in bed all day without having to explain myself

[Hidden in reply to Namtox]

My hubby will say you aren't well, you've got to grab some sleep when you can, he's brilliant!!

[Namtox in reply to Hidden]

That’s quality.. I understand why people don’t get it.. but it does feel a little unfair.. I broke my foot a few years ago and had a boot and people understood because they see the boot

[Hidden in reply to Hidden]

Hi Lynne , sorry to hear from you means the sand man missed you again 😭, tried to get Zoonie to play Meatloaf think he's having trouble with copyrights, feeling better know you had rotten morning, now rotten night ☹💐xx

[Hidden in reply to Hidden]

Hi.

I'm coming off now as I just need to snuggle up with my hot water bottle and electric blanket, pain is too much. Love and hugs Lynne xxxx

[Hidden in reply to Hidden]

Take care snuggle up warm and get some sleep,

Love and hugs Michele xx

[Hidden in reply to Hidden]

Thank you. Don't think I will sleep but I'm finding it hard to message when I'm in pain. Thank you all for your continued support. Love and hugs Lynne xxxx

[Hidden in reply to Hidden]

Always here for you Lynne,

Get some rest and hopefully some relief 💐😊❤

Xxx

[Hidden in reply to Hidden]

Thank you, always here for you too. Love and hugs Lynne xxxx

[Hidden in reply to Hidden]

Go be a snuggle bunny 🐇get warm

Love Michele xxx

[Namtox]

Relax Frankie goes to Hollywood.. probably my 2nd fav to atomic blonde

[Hidden]

Can't get it to play!!

[Hidden]

Brilliant!!

[Hidden]

I'm awake too, now there's a surprise!!

[Hidden]

I like this one, thanks Zoonie

[Hidden]

I like this, thank you. You are a great DJ!!

[Hidden]

It says video unavailable!!

[Namtox in reply to Hidden]

I think the DJ has left the building

[Namtox]

I don’t know.... who am I 😭😭😭😭

[Hidden]

Brilliant,!!

[Hidden]

I love this one!!

[Hidden]

Now, that's more like it!!

[Hidden]

Don't know, now!!

[Namtox]

Gwen stefani stopped producing far too young

[Hidden]

Never seen her before but she's good!!

[Hidden]

That was good is there no end to your talent!!😊

[Hidden]

Good idea!!

[LoneEra]

I know I “bromance” when I see one 💋🤣🤣🤣

[Badbessie]

Lol....I went to see the hospital dietician yesterday and was actually having a rare good day. The dietician started off by saying " I do not think you should be here to do not look well at all!" My thought was if I look that bad on a good day what must I look like on a bad day. She then made my wife's day by saying are you here with your daughter? My thought was I must look bad as my wife is not that many years younger than me. Being told you look well may be a little white lie and annoying but being told how bad you look is far more worrying...Lol...Hopefully the fog will make me forget.

[Hidden]

Hi

Thank you but didn't work for me!! Take care Lynne

[Painny]

.I did not join you last night as I was shattered and managed some fake sleep but reading the comments from start to finish was fun fun fun 😀😁😂😂🙈🙈🙌🙌 this morning

Wow...Namtox you have an excellent sense of humour (as well as Zoonie) 😅🤩

[Namtox in reply to Painny]

Thank you very much, maybe another night. You have to keep laughing as life is too short. Although I do have my down days 😂😂

[Hidden]

And you sure are the grand master of fun and DJ 🤣🤣.

[Hidden]

I bow down to the grand master jester🤣🥳🤣,

[bobbybobb]

Me to I was on twitter, darn, I hate missing a good laugh. xx

[bobbybobb]

I've only been on it about 3 or 4 weeks. x

[Painny]

Sure we did, missed the fun but will listen to all music by our rock star 🌟 fibro in due course 🤩😍

[helen100768]

I've been in so much pain for years and sometimes just someone knocking into causes extreme pain...I had a shop worker few weeks ago who rammed her trolley into me and just laughed while saying sorry...that kind of thing makes me really angry as I was then in agony. Its only recently after being to drs thousands of times taking 180mg of morphine a day and large amounts of antidepressants that I'm finally being listened to and agreed that it is fibro. My memory after being amazing for years is barely existent now and the IBS side is agony I barely eat as whatever I do eat leaves me doubled up and invisible illnesses are the ones people dont understand until you have one. People say u dont look like ur in agony ...well that's because I do have a high pain threshold and I try my best to smile and not let people see how depressed I am. The days I can barely lift my feet to work my car is my lifeline everyone knows that I can lay back on cushions and have a social life. Anyone got any help with IBS side? I'm sick of living on nothing or on odd occasion when I have a jacket potato or something simple I will just be in agony and wish I hadn't. Has anyone tried counselling or cognitive sessions? Years ago I know they tried to say fibromyalgia was just in our heads.