Was awake at 4 am till 10am ...just woke up 4.30 pm and it's dark 🙄 , pain is a bit better. Sleep rules 💜💜💜
Just woken up ....: Was awake at 4 am... - Fibromyalgia Acti...
Just woken up ....
86 Replies
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Well that was a good few hours even if it was the wrong time of day. Sleep is sleep and you have to catch it when you can. xx
I can't wait to get to bed tonight.
Grandson has just left for home. I am seriously exhausted.
My feet, legs and hands are so painful- throbbing,/aching along with everything else ☹️🤪.
Feet up now and a cup of tea.
I don't want to go to bed too early .. or I'll be up again at midnight. 🙄🙄🙄
It's sounds like you have had a very busy weekend with your grandson but that's why we love them so much. Before I go to bed I have to be practically sleepwalking. If I'm not zombified, I've got no chance of dropping off. Hope you get some good rest tonight. xx
Me too Bob. The only time I ever got a good night's sleep was if I'd had a few drinks.
I don't really drink any more now though. I sound like an alcoholic lol but I used to have a drink once a week with my friend. I don't even do that anymore. 🥂🥂
in reply to bobbybobb
Yeah it was , and yes catch up , why can't we just do a 12 -14hour long stretch like a non fibro person would if they felt soooo exhausted,??? My max is 6 hours ...🧠🧠🧠😣
in reply to
Ps.... I have been through periods of 2 hours of sleep at time , so don't feel bad if that's where your at , really impacts on all areas of condition 💜💜💜💜💜💜
bobbybobb in reply to
My max is 2 hours then awake then asleep then awake. I'd like just 5 hours in one stretch would be marvelous. xx
in reply to bobbybobb
So true and important 💜🙃
Yip... Definitely, sleep rules 👍🏻👍🏻
Hiya, oh I am sleep then no sleep , some sleep and more sleep ! Confused ? Me too !!!
I can have all my tablets and it can hit me for six whereby I am kissing the table sitting up !!! But then another day and no sleep for 2 days !! Then I can be sooo tired and sooo fatigued just laying with raised pillows ! It’s so lovely then when I have had 3-4 hours sleep . When I do have some rested sleep I wake up and for the life of me I look at the clock and just can’t work out if it’s 6.30 PM or 6.30 AM !! I look at my phone time and that’s on 24 hr and that becomes confusing working that out !! Oh to go to bed at 10.30 sleep until 7.30 oh dreams !!
Ok so my sleep tends to be fleeting at the best of times but from that hour time change my regular bedtime has been all over the place and I just can't get it sorted.
I really wish they would stop mucking around with the time it serves no useful purpous.
Agreed! There is talk of doing that here in the States but nothing yet. It really makes me feel off.
It was done under the guise of saving energy, however it did not have that effect.
Intrestingly Road Traffic Incidend statistics allways go up when they do it,, so why bother,, just another example of man trying to manipulate nature to his advantage but it rarely works.
Best Wishes, Ray
"To sleep or not to sleep." That is the question.. we all want answered- why? 🙄🤪🙄🤪
dis, the winter of our discontent, to sleep or not to sleep, we are such stuff as dreams are made on. xx
A playwright once said. x
Very interesting. You learn something new every day. Thanks for that Bob 😁
Ps.. I used to do a bit of writing myself. 😁
What sort of writing did you do. xx
Just a few short stories but mainly poetry x
How lovely, I like poetry and spy novels, bit of a contrast. xx
Variety is the spice of life 😁x
Mags you don't have to look very far to find that so many people are not sleeping or have extremely disrupted sleep patterns today.
When you look at the people currently finding that getting away from wifi and mobile phones there sleep improves. We now bath in a literal ocean of Electro Magnetic signals of varying frequencies and they do have an effect every nerve in our body which is also an electrical system.
It has been seen that body voltage has been incresing over the years,, I don't know where it is all going to go,, people seem so unaware, somehow things they don't see dosen't affect them.
Currently 5G is being forced out using frequencys many of which are currently used by military sonic and ultrasonic wepons.
Just think,, most have microwave ovens in the house,, you can't see the 2.45 Ghz waves but they heat the food by vibrating molecules within the food at that frequency,, they do the same to us. Intrestingly ALL microwave ovens leak microwaves,, I used to work with them and it's frightening,, we had to test them before they went out but as long as the leakage was within permitted amounts they were deemed safe to be used. I would not be in the same room as one when it's going today.
All around we are constantly bathed in the 2.4 Ghz signals, they are used on many things in the home phones,, video senders,, computers,, routers,, if you search for a wifi connection with your computer or mobile phone in you living room you can get a huge number of routers showing from neighbours,, all these signals are there and they are having effects even if you can't see them.
If it gets a signal,,,, or sends a signal,, or has the word Wireless or Wifi on it,, in this houes the Wifi is turned off or disabled.
One of the things that is frightening is those Xbox Playstation things that are so popular with youths today,, on many of them you cannot even turn the WiFi off,, an Kids have these things in there bedrooms,, of course the wifi router is also screeming and their very necessary i phone if not sitting on the bedside table on the bed beside them screaming out their constant signals.
More and more people are at least becoming aware and at least pulling the plug on the wifi router when they are trying to sleep but it's almost impossible to block out the signals of others,, I think it's a huge very overlooked and dismissed problem today and all because we can't see it.
Ray
in reply to RayB
Takes 2 hours of darkness for body to produce melatonin.... If we have any !
RayB in reply to
When I read peoples writeings about light spectrum and melatonin,, gluten,, dairy and EMF it fills me with hope, for the future generations.
I know in my heart that medcine as we know it is going to have to buck up its ideas and start moving with the times.
It is no longer good enough for alopathic medine to sit with eyes tightly shut while saying "there is no evidance to support" whatever it is they want to dismiss or relegate into the "alternitive" bin.
Drug companies need to loose the current strangle hold they have on the medical profession and Dr's need to be free to explore all treatment options in an honest and straight forward manner.
So true RayB, people can look up the electromagnetic spectrum, it has a very good chart on there. Gives easy to understand jargon and explains in relation to everyday and the world around you. I best start looking on Rightmove for a bunker to buy.
in reply to bobbybobb
Lol or buy remote island for all of us . Lol
RayB in reply to
I think I'll stay were I am,, all us on an island,,, I couldn't take the moaning!
I almost living in one! It was not by plan,, when I bought this house I decided to supper insulate and the insulation has two layers of foil. When friends call they cannot get a signal on there moblie phones and have to go outside. I also have all wifi disabled on anything that has it in the house and use a hard wired internet connection.
I still get next doors wifi signal leaking in,, but just about,, really the only signals getting in now is through the windows but I am working on that.
Interlined roman blinds with two layers of foil,,, and the best bit the house is so easy to heat,, last year it cost me under £200 to heat the house all winter to and average temp of 24C . My sole reason for the insulation was just trying to stay more comfortable in winter,, the wifi blocking was just and incedental gift from the gods!
in reply to RayB
I'm not sure but is there a something that can do that or was I imagining....prob more electronic s
RayB in reply to
If you mean block radio frequency including millimeter waves, tinfoil does quite well if my house is anything to go by. It would probably even more effective if it were earthed,,, mine is not earthed as my intention was only to insulate for heat when I decided to do it,, but it works beautifully with the RF as I later discovered to my delight. Most would probably be very disapointed at not being able to get a mobile signal but for me it's a welcome blessing in disguise.
That's incredible £200 to heat the house all winter, you should write a fact sheet. My heating bill was mega, I say mega. In fact my neighbours can walk around the neighbourhood, whilst in the depths of winter, in t-shirts and shorts from the heat my house emits on its own. British Gas love me. Long after I'm gone I'm sure they will place a plaque on the house saying, highest profit's recorded from this one residence.
The only thing is I will never recoup the money I spent in my lifetime,, unless I live for another 100 years,, I probably could have bought a second home for the cost as it involved the entire house being stripped into the brick and the insulation fitted,, then it all had to be replastered. The cost just for buying the insulation alone was just under £10,000 and I got a really good deal on the cost. It has just over 4 times the insulation requirments for new builds in the UK. I replaced all the windows at the same time with the best I could afford. but the house is so warm in winter now,, imagine living in a polystyrene box,,that's what it's like. I worried about sitting freezing and not able to afford heat with not being able to work any longer so that was the deciding factor in doing it .
I tend to really feel the cold from the fibro started and it just seems to get worse as the years pass,, I dread the winter now,,, my body weight is also now down to just over 9 stone give or take a pound or two so very little body fat to keep me warm now which compounds feeling the cold,, but being lighter also makes it a bit easier for getting about.
Well I think the main thing is, is that you are comfortable in your own home and you are happy with the adjustments you have made. Sounds like it was a big job though.
I had to live here while it was getting done,, I was eating dirt and dust,,it was awful,, even thinking back I don't know how I got through it!
Mum used to say there is two things you should never allow through the door,,, Pigs and Plasterers !
I've not heard that saying before but it's very funny. I never minded any work getting done. Now with Fibro, any painting or decorating, I find very stressful as though you can't get anything coordinated. Everything seems to take so much longer, it's like your ploughing through mud to do the slightest task.
To be honest I grew up with work going on at home.
Dad was a carpenter and mum didn't believe in spending money she didn't have,,, or "Mortgages,,,, a noose round your neck!"
I can hardly count the number of houses we moved into while Dad knocked them apart and rebuilt them as they could afford only to move again,,, that house jockying,, it was awful.
To be honest I would live in a garden shed if it was well insulated, quiet and had a stove to keep me warm,,,, if it was hidden in trees all the better.
That's a great analysis Ray and very informative.
You have given me "Food" for thought- no pun intended 😁.
Don't know what wild idea you have in mind Mag's ,,, probably running away just like that Zoonie one who has notions on being a Beachbum of all things!
See my last post above ↑ All perfecty true!!!
Ray
I would like to live in a cottage by the sea.
That is the dream, that's where I want to be.
With a natural, glowing, crackling fire.
Simplicity 😊.
in reply to mattoid-mags
Absolutely , it's seasonal otherwise I would be there full time ...
mattoid-mags in reply to
What better way to spend your twilight years.
My idea of heaven 😀
in reply to mattoid-mags
That's what I thought , can't do anything else so drive there, have a sleep , do usual therapy necessary , easier in some ways , kitchen very close lol , get a load of fresh air feels great , change of scenery , but id always wanted a campervan but hard to drive , and queried huge commitment in a way 💜
mattoid-mags in reply to
Ah, the fresh sea air and the gentle waves and sand at your feet.
A campervan sounds great if one could drive... Freedom and independence.
I don't drive, I barely go out these days.
It would be a big commitment owning a campervan. Maintenance, fuel etc.
Mags I got the fire,,huge big woodstove in the livingroom,, I wasn't going to miss that as I would have had the climate in ecudore,,,, mind you I probably couldn't have left the stove as I called it Bridie after Mum.
I had her down in Bangor one January,, snowing a blizzard it was but getting out with her was the only sanity I had with the Alzhimers as she was content on the move.
Anyway,, we when in to a little cafe and had a bit of lunch and on the way back to the car didn't we clap eyes on this window with a big stove and flames ablazing to the heavens. You know what they say about a moth to the flame,, the next thing we were in the shop standing absorbing the rays looking out at the snow,,, well we were all set and had no intentions of leaving. I don't quite know how it happened but found myself writing a check out for the guts of £2000 and came out with a reciept.
It was delivered a few days later and lived in mums kitchen for years with a blanket around it as I could hardly bare to look at my senior moment,,,,,, I had nowhere to install it as half the chimneybreast would have to come out to get it in.
Lets just say I am one of those people who don't do things by halves but I put it in when I bought this house and I love it,,, Sorry "Bridie" as I called it after Mum,,,, the first time I lit it,, I set in tears all the memories of that day in Bangor,,, the bane of my life when the Alzhimers got a grip,, but I loved her to bits and part of me will always miss her.
Ray
Ah Ray, that's such a lovely story. You sure don't do things by half lol.😊😀
The memories of your two beloved Bridies will live on forevermore.
Oh Mag's you don't know the half of it,,, my indulgence is only limited by lack of funds nowdays as all the savings is gone !
Yeah, what one could do if only we had the funds 😁👍🏻.
One can only dream.
in reply to mattoid-mags
Look at Lady Gaga with million's not a cure , she struggles.....
in reply to mattoid-mags
My friend says " if you don't want to go without , Look with in " ......I looked , it s empty now ..🤪
mattoid-mags in reply to
Empty lol 🤣🤣🤣 that's a cracker 😁👍🏻
The strange thing is Mags, had I the world not much would change,, I might start spending winters in Maderia but a hotel would be fine,, they are all basicaly nursing homes in winter anyway,,, and then come back here when the weather warmed up.
I would probably go down the line of Functional medcine or Orthomolecular medcine to see if I could get feeling a bit better with the fibro and the gut,, maybe see a few of those people the Dr's would boo hoo,, but lets face it the Alopathic Dr's haven't did much for me and don't seem much intrested in anything other than throwing you antidepressants and telling you to get on with it.
I would definately get some help in the house as I really need it,, but my life's simple and that's the way Ilike it.
I might even get an new car,,, but it would be nothing exessive or flash,, and probably a year old irrespective of the figure in the bank.
I would be more intrested in trying to do something for others who were not expecting it but I would not be buying any iphones or injection molded plastic!
Ray
I hear you Ray.
Like I said, I would buy myself a cottage by the sea, that's the dream.
I would explore alternative medicines too.
I'd help out the family and friends and give to certain charities.
I would also do a lot for people in need.
That would bring me so much joy in helping others.
I'd die happy and content 😊
I used to volunter at a homeless charity many years ago.
There was a elderly Turkish lady that would come in (Mariza) didn't speak a word of english nor I a word of Turkish. She would sit and tell me some of her problems and I would sit with her sometimes holding her hand, sobing her we heart out at times: It was surprising what I understood and I remember her fondly. Life is simple.
On the other hand I don't want to die happy and content,,, I think I might have more fun dying in the arms of a Dr while trying to bite his head off,,, Oh dear I think the stomach cramps are perhaps getting to me tonight,, perhaps I should have left the red kidney beans out of that vegan chilli I had for dinner!
Ray
in reply to RayB
Lol 🤣 🤣 thanks
mattoid-mags in reply to
I tried to reply to you but it disappeared lol
mattoid-mags in reply to
Was saying it's hard to get about whether you drive or not.. wouldn't mind a chauffeur though, just incase lol
in reply to mattoid-mags
I did taxis for a year , can't do that again awful, chauffeur better , me too 💜☹️
in reply to
Ps , deleted other message soo many mistakes ...
in reply to
Staying in makes me feel nuts ! Going anywhere painful ......
mattoid-mags in reply to
Vicious circle, you can't win.
mattoid-mags in reply to
Yes definitely, a little bit of luxury- why not 😀
RayB in reply to
Oh dear lord,,, Chauffeur's and Taxies,, sure where would you go?
If t'was a good looking driver with a bit of personality and he's making eyes at you well,, perhaps I could see the point,, then again,, could ya really be anoyed,,, better off getting a wood stove and staying in the house luv!
Ray
☺️☺️☺️☺️🙃
Glad the pain is better for you after your sleep . Nothing worse than pain constantly .
Thank you. At last 💜💜💜
I used to be like this. I decided I was wasting my days by being in bed so I started setting my alarm for 11-00 am and I forced myself to get up even if I had only had a couple of hours sleep. I then moved my alarm back by half an hour each week until I got to 7-00 am which seemed a reasonable time for me to get up. This was about 15 years ago and my sleep patterns have remained reasonable ever since. The Consultant at the Pain Management clinic told me last year that this is the recommended way of regulating sleep now. It wasn't easy and I still have nights where I don't get to sleep until 4-00 am but I've stuck with it.
041051
I tried diligently to get the sleep sorted and while I had a modicum of improvement it was impossible.
I have been through all the blue light blocking, suplementing melatonin,,,,, I don't eat after about 5pm or as close to it as I can manage.
My room is in total darkness,,, Total not a pinhole of light!
Forced myself to stay awake till it was just cruel,, sleep is just evasive for me. I would say that I emnulate sleep,,,, or try to pretend I'm sleeping more than anything.
Strange thing is every once in a while I will fall deeply asleep where I have slept for a very long time sometimes about thirty hours.
When this happens I wake up very confused to the point of distrubed and it takes me quite a while coming around,, I don't feel better for the sleep but glad that I did auctualy sleep well and know nothing about it,
in reply to 041051
Mmm , I'm awake at 4 30am , without enough sleep,it's shocking
Thanks .me too for last year or so , sleep therapy, just have to do your best , I over did things soo , it doesn't take much to fall off track 💜💜💜💜
Also , usually PAIN related
I blame 🧠🧠🧠and it rules , fibro stronger than me , meds and all therapy.. we just do the best we can x
Oh dear lord NO,,, Beachbum,,,,,wild romantic yet ill thought,,, that sand gets everywhere,, it would even be in the bed,,, now that don't work in my mind with a few patches where the even the skin is very sensitive.
Not so long ago I had a few weeks of toying with the idea of selling the house buying several acres of rain forest in Ecudore with lots of fruit trees and going to live there in a wooden shack.
The nearest airport was 19hrs on a bus,,,,,, a Ecudorian Bus no less,,,, I was shure I could manage it even if I had to do it in several stages over a week or two and stopping over in towns along the way. Remember this was the senerio playing in my head,,,,, Then I arrived and was pleased enough with the souroundings and the shack was perfectly adiquite,, I lay on the thing they called a bed and reality hit home,,,there was no way I was getting the superking size vispring sublime supreme over with me and if it weren't going then I wasn't going,,, I love that bed,, it and the big heat lamp are perhaps my two most treasured possesions now.
I bought the bed as I was so sore at the bottom of the ribcage and trying to lie down was hard to do.
Sadly I had to raise the back of the bed up about 10 inches on breezblocks because of the acid reflux and it really takes the look of it but a least I can lie down.
I even convinced myself that I wouldn't need much in the way of cloths and there was a river,, just tie the grass skirt to a roap and chuck it in for washing that got me out of hand washing with no machine.
Then I started thinking of mosquito,,, and even worse botfly, and god knows what else the natives take for granted ,, I eventualy let the romantic notion go and I'm staying put in the house with my bed on breezblocks.
Ray.
in reply to RayB
Extreme , I wouldn't make it....! No heat lamp required there , same as you memory foam is my best friend .but do have caravan near beach , very happy .....you may want to visit 🛌🛌🛌🛀
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