New to all this.... :-(: Hi, I've just... - Fibromyalgia Acti...

Fibromyalgia Action UK

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New to all this.... :-(

Jopixy profile image
11 Replies

Hi, I've just been diagnosed after experiencing a bad fall at the end of last year and feel a little bit angry and confused.

My main symptom is pain (neck, shoulders, lower back and wrists), along with stiffness, tiredness, flu-like symptoms and nausea but thankfully not the associated depression. I have days when I feel like I can't do anything but have two little boys and two dogs to look after. My partner is burying his head in the sand and I don't know where to begin in explaining all of this to him :-(

I just wondered if anyone could offer some advice please?

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Jopixy profile image
Jopixy
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11 Replies
Ginsing profile image
Ginsing

Hi Jopixy welcome to the site not all is lost there are many dear people who will offer support and information onFibro.

First of all have a look at the FibroAction part of our page they have lots of good information to help you cope.

So any time you need a vent there is always someone around to listen and give suggestions don't forget and we have fun mad wonderful amusing fun so keep dropping by. xgins

Jopixy profile image
Jopixy in reply to Ginsing

Thank you gins, sorry I replied in the main thread, don't know whether that was fogginess or just ineptitude ;-)

Hi there sorry you have to be here .

We have lots of information at

fibroaction.org.

For explaining to family members friends etc try showing them this page and asking them to read it ...it does sum up us fibromites pretty well

butyoudontlooksick.com/wpre...

Hope you find this site and everyone welcoming and helpful

VG x

Jopixy profile image
Jopixy in reply to

Thank you Very-Grumpy, I am going to print off the spoons document and pin it to the wall! Jo :-)

Jopixy profile image
Jopixy

Thank you gins and Very-Grumpy for the information, I will have a look around. I think that the largest part of my battle will be getting my boys to realise that their personal "slave" can't work quite as fast as she used to be able to ;-)

ladymoth profile image
ladymoth

Hi Jopixy,

Lots of good advice above, but may I add that even if you were in full good health, your partner should still be helpful, and your children should certainly not regard you as a personal slave!

Don't worry too much about explaining - you don't need to justify yourself, and don't nag or threaten them, either - just state clearly and assertively what you require them to do for themselves, and instruct where necessary.

Offer praise and love for tasks well done, not bribes or presents, and they'll soon be very pleased with themselves for being such big strong boys.

Use the same method on your partner - adjusting manner to suit, but they're all little boys really, and while you're at it, tell him how you admire his skill and efficiency when he does chores for you - men love having their egos massaged!

I know this might come over as though I'm a manipulative old bitch - well, that's because I am! :D

Moffy x

Jopixy profile image
Jopixy in reply to ladymoth

Hi Moffy,

Thank you for your advice. I'm afraid that my OH was raised to believe that the woman does all the domestic stuff so changing his perspective is going to be a long hard battle - I've been trying for 10 years!!

The kids are generally being more helpful, its just the little things like not putting on shoes to leave for school or running off when we are trying to leave the house that seem to have the biggest effect on me.

I just wonder how everyone manages on a day to day basis with getting things done, especially when the pain and tiredness can knock you off your feet without any warning at all.

Jo x

Things don't get done ... Except Definate needs .. Keeping kitchen counter clean and fresh and the toilet ... Everything else is done when and if .... I was horrified at the change I had to make ... I must admit my other half used to say I had OCD about the house being perfect ... Now he and my son say its more like a home ... So I have get a lot more laid back about it... And my OH and son do help round the house even though its not up to the standard I like I keep quiet....

VG x

ladymoth profile image
ladymoth

Spot on, VG - it's no good sweating the small stuff, a clean toilet and kitchen are all that really matters - other stuff has to wait!

Moffy x

MrsOtter profile image
MrsOtter

See I am used to it now sort of, I forget how awful it is when it all starts, I got told i was just lazy and am hypochondriac even by my parents, but now after around 7 years they are a little more understanding, I can say they now get it because they dont, no one can really understand Fibro unless they suffer from it which Is why this website is the best support any sufferer can have :)

Unfortunately at 19 i do have the depression which comes along with Fibro but i think that's more my age and all the things i want to do and i know i cant for example for as long as I can remember I have wanted to go into the navy, now I cant. At the minute I work in a busy kitchen where my boss and work colleagues dont understand my illness and make me feel so small at work. I am bullied at work and I dont have the energy to even do anything about it plus i dont need to extra stress.

People think illnesses are just physical but things like Fibro do affect the whole of your life. Kind of sucks specially with people getting it as young as 11 like me. Means you loose half of your life. Kind of rambling on about myself atm but i did actually comment to say Your partner will come round to the idea and become as supportive as he can I am sure of that, it is hard for people to understand with their being no cause or cure etc hard to get your head around that your partner is going to be suffering for the rest of their life but one day it will click that maybe they wouldnt be suffering as much if i got my arse into gear :D

I have a dog to look after too but to be he is my little pain killer with a waggerly tail :) doesnt matter how bad i am when he comes and snuggles up to me or start licking my face off i cant help but to cry.

If you wanna talk message me :)

Kaysha xx

Jopixy profile image
Jopixy in reply to MrsOtter

Thank you Kaysha :-) Everyone's support is really appreciated. I think that I have always had a tendency to Fibro in my system and have battled CFS and IBS for many years but the shock of the fall and fracture caused it all to come out :-(

I am terrified of starting down the line with the meds as the side effects look horrifying and I really don't want to run the risk of getting depressed (as I've been there before) or gaining any more weight 'cos how will I ever get it off when I can't exercise like I used to??

I really feel for you being so young and having this horrible thing, here's hoping for a magic cure :-)

Jo x

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