Sleepless in Sussex

I refuse to put the tv on. Again. My back is aching from overdoing the cleaning. Honestly, wiping worktops down should not have done this. Well I did rinse the dogs feet and wash my hair and that was leaning. So frustrated. Eyelid sticking to eyeball but still barely tired and its gone 2am! I am going to give it another try. Back to work tomorrow - Monday. How I am going to stay awake I do not know!

16 Replies

  • Hi, I feel for you - I really do. I find washing up hurts my back- how pathetic. When I am finally forced to miss work it's usually because I can't keep my eyes open coz of lack of sleep - you know that feeling where you're so tired you shake and feel sick. I'll never get anyone to understand at work. They think it's pain but often it's that I am wiped out by pain or dosed up on painkillers it impossible to concentrate. I hope you get some sleep for Monday xxx

  • hi using an on screen keyboard (x3 k/boards destroyed where I pass out and yes coffee everywhere)so keeping it short. I have a chair in the kitchen so I can do most things with less stress e.g. mop floor, wash up etc. I know it takes some effort to move every time I have to change the area but for me discomfort or pain =stress=pain and exhaustion honestly it works. hey it might not be how I've always done it but by embracing my illness this way I can still do things and feel ok afterword's I've not passed out so much and for me this means no bruises on my face where I hit the table top =:))) and not so many symptoms maybe there are something's you can do but a little differently hope it help only if you don't take care and pace it you'll only exasperate your symptoms fibro friend.

  • I can totally sympathise with you .I get low back pain just from washing up and cleaning floors etc.i find the only way to ease pain is to go to bed for a couple of hours.I always have a sleep after lunch and sometimes in the night I only sleep for about 5 hours have tried cutting out sleep in the day makes no difference to night- time oyu work full time or part time.? whichever it must be hard trying to stay awake , concentrate and do stuff as well.

  • Hi there, I completely sympathise, I often have nights like that, but I was told to stay in bed and not put things like the tv on (I don't have one in my bedroom) as that stimulates the brain so well done you for not doing that ! I know it's so hard when you eventually fall asleep just about when you're meant to be getting up, and how hard it is to then get going and I don't have to go to work , so I admire you for that . I can also sleep "really well" and then wake up feeling like I've been awake all night long, not refreshed at all ! :o

    On the house work front I suppose I'm lucky as I live alone and wash things up as I go along. I also rarely cook for myself so that cuts down on things, vacuuming kills my back, but it's been made easier by having an upright one, but I suppose at the end of the day it really does come down to the words that resonate all the time........pacing, pacing, pacing !!! Have I got that covered......nope....absolutely not....still end up overdoing it and suffering hugely as a result ...whhahhhh :o :o

    Good luck for tomorrow, rest as much as you possibly can today :-)

    Foggy x

  • Thanks. Trouble is I do pace myself and was feeling normal for once. Now I have really done it. Its taking too long for my back to get right. I will go into work tomorrow but I will have to see the doctor to get anti-inflamatories for my back. I am getting myofacial pain from my back, radiating out to my hips. The gel isn't working well enough. So I guess I'm in for another restless night as I got up at 11am.

  • Eeeek sorry, sounds like you're having a really bad time :-( Just a thought, but might your doctor be able to refer you to either an osteopath or physio who could possibly help with the back situation. Unfortunately back pain is a law unto itself, I've had several compression fractures, and have problems all the time, but still I push myself too hard and then all hell breaks loose, but I'm my own worst enemy, the word "no" doesn't seem to exist in my vocabulary, I can think it when asked to something I shouldn't, then I open my mouth and find "yes" popping out..... Oh silly me :-)

    Good luck for tomorrow and I really hope you manage to get even just a little but of good quality sleep ..... Hmmm just remembered, I've heard if you eat a banana and have warm milk before bed that can help too, but I've not tried it.......... As the saying goes, "nothing ventured, nothing gained :-)

    Foggy x

  • Hi Sarah-Jane just out of curiosity what strength and type of gel are you using?

    Mine's called Phorpain and its 10% maximum strength, just wondered because if its only 5% you could ask your GP for something stronger.

    It doesn't always work though I agree with that but usually takes enough of the pain away so its bearable :) I also use it on my lower back as the pain rides through my legs when I move about. Actually it would be nice to climb into a bath full of it sometimes so I could cover my whole self in it :o

    :) xxxsianxxx :)

  • Hi Sarah-Jane

    I've always been told not to force sleep especially if have been asleep for a few hours as it means I've slept for a full sleep cycle............ mine is approx 3.5 -4 hrs. I was told to put the tv on, read, get a puzzle book and have a cuppa and at some point I'd catch the sleep cycle again. It wears you out more trying to get to sleep and increases your fatigue :)

    However, when having to go to work I empathise with you as you become terrified of losing your job for not being on the ball. I suggest distraction relaxation techniques after a bath and a mug of hot choc :)

    I have posted some guided imagery relaxation if you look at my posts or under symptoms / treatments if you fancy giving it a go.

    Many sleepy fluffies on route to you

    :) xxxsianxxx :)

  • Thanks. I do use my ipad to listen to meditation which sometimes works, but I hate the earphones [I have tried several types but I also want to sleep on my side!]

  • I must admit I had that problem with earphones they hurt my ears :o Plus I can't sleep on my back either.

    I would play it so it fills the the room around you so it sweeps you up and takes you somewhere beautiful :) If its possible to do that :o ?

    Lavender oil is good for relaxation too whether its in a massage oil, bath oil or just simply a couple of drops on your pillow before bed let it mellow a little first as its quite strongly scented.

    I hope you find a solution that works for you Sarah-Jane :)

    :) xxxsianxxx :)

  • At he moment, after having got a new doctor, I am going through the process of having FM confirmed. For more than 30 years I have told myself that I'm just being lazy and 'could do better'! Your post and the replies all make so much sense (no fluffy cuddles etc) and confirm that this illness does exist and that I've got it.

    I gave up my business about 18 months ago and thought that I would start to have more energy to do the housework, gardening and generally enjoy life but feel dreadful. I am lucky enough to have several really good fun friends, young, old, male, female, gay, who say they will still love me even if I can't meet up so much but I am terrified of gradually losing them. My husband of 49 years says we will manage between us but he is not well and I had thought I would be his carer, not the other way around.

    This is my first post and I am sorry if I have winged on, but I feel you are a positive person trying to make the best of a bad job. I sometimes have problems getting to sleep at night but am lucky enough to be able to crawl out of bed when I wake up usually around lunch time. Sometimes eating chocolate or, strangely, a banana, when I'm all tucked up in bed in the dark helps. Try it, it might just work for you, even if you do wake up with chocolate all over your face and on the pillowcase!

  • Nice to hear from you. My mum looked like she was going to need looking after, until my step-dad was struck down with a rare form of meningitis which prompted altsheimers. We never know do we? I am still working and trying to hang on. I find pacing myself usually works until I overdo something being over confident. I hear chocolate is one of the best snacks at night as it doesn't rot your teeth and a banana helps with sleep! I tried a mug of warm milk, but that just overheats me. Oh well, I will keep trying. This usually happens once every month or two.

  • Dear Sarah-Jane,

    Life is not kind and the people you love most seem to go first. I worked for 52 years, the last 28 as a recruitment consultant working only on commission. 12 years ago I started up my own company as I found I didn't want the worry of having to reach targets; helping people to make the right career moves were far more important than reaching a target. Also, often feeling dreadful I just wasn't able to work efficiently all the time. Working for myself, with a couple of staff who were sympathetic to my bad spells and kept the show on the road, and delighted when I was on form, was perfect. However, a couple of years ago my bad spells increased and the good times decreased, and as the business relied almost entirely on my name, personal reputation and knowledge, I really had no option but to give up and retire. I hope your bosses and colleagues understand your illness and make allowances, knowing that you will give your all when you are up to it. I found it easier to tell people when I couldn't work to full efficiency, that my brain was 'a bit fuzzy' but it wouldn't be for long and then I would steam ahead like a train, and nearly all my clients stayed with me, for which I am very grateful. The mottoes above my desk were - "You can eat an elephant, if you take one bite at a time", and "What is the worst that can happen

    if I don't do it?" Answer, usually, not very much! . Cheers, Roberta

  • Welcome Roberta to the forum where we are all akin and hope you'll have a mooch round our Mother site too where there is a wealth of information. I'm glad you have found a connection and some answers here and there's no need to apologise for whinging as we all come here to do that.

    We are a friendly bunch that like to care and share so you're not alone in your fibro journey.

    I'm sorry you had to give up your business Roberta, that must have been very difficult for you. Hopefully when you get your diagnosis things will start to improve for you as they should give you holistic treatments through the pain management clinic. If they don't offer it.... ask for it......... what have you got to lose?

    I spent 20 years battling work, housework, uni etc and was treat like I was lazy even though I was very astute at all tasks I did. Friends........... well they come and go sadly, but communication is the key. Some people will just never understand it no matter how many times and different expressions used.

    It is often the case that all we need to do is do things differently so as to reduce the after effect we feel the next day. check this site for the spoon theory!!

    Many fluffies for you, (gentle hugs so as not to cause pain)

    :) xxxsianxxx :)

  • I know the feeling.



  • Oh gosh so do I pains are so bad today,I feel exhausted,and down...

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