A long night

Strange this fibro I live on the isle of wight yesterday

I went to a show in Bournmouth the show was very good

I live on the isle of wight so a boat and a car to bournemouth

Took one and a half hours not to bad.

Our problems started when we arrived back at the boat to find that

Due to the winds it was not running but if we wanted to get another

Boat we had to go to Portsmouth as this boat was still going, so off

We go another hour travel arrived to be told that this boat would be

Running late due to a fuel problem.

By the time the boat was running and we got to the isle of wight

The time was 4.30 in the morning very tired and just wanted bed

It then took another hour to drive home because we had landed

The wrong side of the island. Got into bed just after 5 very tired

Husband asleep as soon as his head hit the pillow

DId I sleep no of course not, took tramadol as a bit of pain still no sleep

Any way no sleep for me brain just would not shut down

Of course no bread in the house, so husband went out to get some

While he was away Ihad this boost of energy all the washing was done

I hovered dusted. Where did this all come from as I had no sleep

It's now the middle of the night I have been to bed a few times my

Brain just will shut down I have taken a sleeping tablet plus I now

Have lots of pain so I have taken a tramadol, still no sleep

Why does our body react like this when we do to much I am so

Tired just can't shut down

Iam sorry if this is very boring this the problem with firstly being over tired

And the trying to do thing just makes the fibr worse.

Thank you for reading this group gives me great comfort at times

Like this when sat by my self with nothing to do thank you all so much

A real life line hugs to you all

Viv

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nights are the worst myinsomnia gets me down i have takento writing poetry lol sometimes it clears my mund butterfly hugz petal

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Thank you blossom may be I will try

That I expect mine will be rubbish but

It may make me laugh

My man stan, is a noisy old man

The old mans wife Viv would like

To give her old man stan.

A dig in the rib.

Not very good and I don't think it's poetry but it's a start

I work in a prison and the prisoners have some thing called creative

Writing which is very good you writ a story I might give that a try

Thank you

Gentle hugs Viv

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Hi Viv,

I guess we are'nt really supposed to do too much, hard as we all try esp when we've a spurt of energy, (akin to a madness) or feels like that sometimes, and boy do we suffer for it, hope you enjoy yourself pet love Claire xxxx

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nothing writen on here is ever boring.this site is the family iv needed for a long time and now it yours too.we all understand each other cos only we know,respect and feel each others pain.you right what you want lv,we`r all here for you.lots of lv and fluffy warm hugs fm me xxx

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Thank you all hope you have a good day the sun is

Sort of shining

Viv hugs

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Hi Vivien

I used to live on the island so I well understand the frustration created by those boats!

I've been told that sleep is an activity..... It requires energy to balance the right chemicals for the brain to switch off. I know what you mean about night time activity.I tend to write at night because my imagination and creativity kicks in when I've missed my the sleepy boat.

I get really tired between 4pm and 8pm but its not convenient to shut my head off then. I work through that initial tiredness and then CAN'T switch off till about 3 am if I'm lucky.That sleep is full of dreams and nightmares, because although I do achieve sleep its the wrong sort. If I DO sleep during the day (which I rarely do any more) then I don't sleep at night anyway. I SHOULD rest at 4pm really but life means I'm usually driving at that time.

BUT if I pace properly and eat properly through the day, and find the right balance of rest and activity...then I can find sleep at a reasonable hour and sleep relatively peacefully. It doesn't happen that often unfortunately. It's lovely when it does happen because I start to feel I'm heading back into being healthy again. Its short lived though meaning I'm unable to work.

I'm sure my inability to balance my brains chemicals is at the heart of my illness. Did you know that 80% of seratonin (the happy chemical) is stored in the gut ! A balance is needed between gut and brain too.

Although I have had Glandular Fever (the dreaded illness that seems to trigger this illness for many) I have also had Entero Viruses. I'm pretty sure these Entero (gut) viruses are the real trigger and Glandular Fever came to be because my immune system was already compramised.

I hope your enforced activity doesn't leave you in a spiral of tiredness and insomnia now. Fighting it drains you of more energy. I find living each day seperately helps. I have to accept the time my day starts (11.30 today) I have to take the first couple of hours very slowly to let my day time chemicals settle down. I have to eat foods that are safe and not toxic triggers and allow myself to enjoy the bit of day I have. Not over-doing it when I have things to do. So that by the time I go to bed at night I have saved some energy to be able to sleep.

I'm not that good at it !!!!!! Its so easy to boom and bust x

Stepper

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Thanks stepper no I did not know that about serotonin, I wonder

If that is why so many of us has IBS maybe it's an inbalance.

When I first went to my doctor with this pain he said I was depressed

Never been depressed in my life although some times now I get a bit

Tearful just get fed up with pain I think.

Like a lot of people I had a car crash but I was not hurt, I also

Had a problem when I returned from Thailand with being sick

And the other thing that goes with sickness, I was very ill.

And I lost my Mum but I grief is a bit different from depression

I think.

You are right about that the spiral of tiredness, yes very tired

My fault, and I agree with you we have some control we just have

To make are selfs do things like sit down not easy, and food is

Important, I try not to be a pig and eat to much as that has an effect

As well.

It is hard to change what you were before the fibro, and hard

To work I work with people who don't want to do ther job so tend

To do to much of there work as well

I wonder if our paths had crossed on the island

Thank you so much for your reply interesting things I did

Not know

Have a pain free day

Hugs and thanks viv

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Hya Viviene. Maybe we did cross paths.... I went to the friends with ME meetings in Newport a couple of times.

I've found GP's like to label us as depressed because it fits in with the NHS's need to keep all this under the mental health banner. I don't use my GP any more because all they do is give me prescriptions for anti depressants.... which might help in other ways, but I CAN'T tolerate them!!!! which they know. No other treatment available.... so I get private alternative treatment now.

Its my opinion that we all suffer from grief.... Grief in losing who we were and what we could do before diagnosis. In my case grief at not being able to work and losing the ability to perform my profession or change to another one.

What started all this is so confusing. I had car crashes....and entero viruses and GF... but I've had periods of time when I have improved only to have it taken away again as I've been in relapse. (I have Fibro and CFS and I think they take it in turns to hammer me)

Its a bit off putting that I was at my best during a marriage seperation LOL I think thats co incidence though? lol .....maybe....

I do think many of us are people pleasers. Other people get away with blue murder while we are constantly left feeling we should be doing more. Self care for me is about finding the balance.

On an airoplane the oxygen mask drops and my first instinct is to give it to the person next to me while I suffocate. I'm trying to learn to consider my REAL needs before giving away my energy to others.

Work in progress....

stepper x

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Thank you for very nice reply

Love viv

[Lizzie575]

This was my effort a couple of weeks ago, on another endless sleepless night.

There I was just living my life

Having fun, with not a bit of strife.

Then out of nowhere, from the blue

You decided to join in my life too,

You crept up from behind and hit me hard,

I didn’t know my life would be so marred.

First came the fatigue and then the pain,

The fog rose up and filled my brain.

The nights were filled with lack of sleep

My mind wandered shallow, then into the deep.

The unfairness of it made me sigh

And although I tried not to, I cried and cried.

I asked you often ‘ why did you chose me?’

But you gave no reason that I can see.

‘How are you Lizzie?’ people stopped to say.

Fine I replied, then walked away.

When deep inside I wanted to scream

The pain is strong, the aching mean,

My body is tired, my mind is too

Walking through treacle is what I do.

Its easier to smile and let them go

Then tell them really what they ought to know.

The fatigue is creeping back up again

And just to walk is so full of pain.

I look alright, I look quite fine

It hard for friends to know whats in my mind.

And when I do get the chance to say

Silence comes and they turn away,

They try to help but don’t understand

I cant explain, it's like sinking in sand.

So don’t get too comfy for I'm going to find

A way to rid you from my life and my mind.

So pack your things and be ready to go

For I am a fighter and I want you to know

That I will not rest until you are on your way

And I have my life back, and I have the say.

You shared my life Fibro and tore it apart.

Go now I'm telling you, there’s no room in my heart.

Leave this instance and don’t turn around,

Whats that you hear, its my feet on the ground

Running  for life with the wind in my hair

You are now gone and so are my cares.

So you just keep walking and never come back

There's no room for you here, there's nothing I lack.

I’m standing here with my arms open wide

My old friend, health, and I are about to collide.

 

Hope you get some sleep tonight

Luv Lizie x