Lying down hurts too much but too tired to get up

I get like this and I find getting a bath, bubbles, candles, anything nice, helps a little (I find lights too bright when I feel so I'll with it). It takes some energy to do but relieves a little so good for us. If you have people living with you, get them to run it or if you do showers instead, sit in the shower tray and let the warm water flow. I didn't sleep so well last night and think if i said I got an hour that would be generous. I feel I am running on empty today and a day in bed is what I should be doing. Pain is not my bedfellow today, that was at the beginning of the week for three days and spent alot of that in bed. Try to think of nice things if you can. When I have been bed bound, the sunshine through the curtain has helped me feel less worthless. Where is your pain or is it all over? I use hot water bottles for localised pain and prop myself up with pillows when I can.

You're not alone on her but, do you have supportive people in your life anywhere? Even if it's your Dr ? 

So sorry to hear how much you are struggling. It's so difficult to feel that way! Well done for reaching out and posting on here. It sounds like your really do need to get some people on your side, which is obviously a bit difficult with zero energy! That's when online communities can be great

I have days like you're describing about 2-3 days a week just now. It's just awful and like you, I am just awake waiting until I can go to sleep. Nothing completely takes it away but in the days I do feel like this, I find that meditating really helps. I like a body scan meditation when I'm feeling achy and sore.

I posted on here last week when I had an awful day and people suggested preparing for really bad days which I think is a great idea. I'd also read elsewhere about the power of rest by karen brody- she's just brought out a book about it and I can't wait to read it. She suggests making a rest den. It can be anywhere (I've no spare room so have built mine behind the sofa!) just a small space to surround yourself with comfortable, comfortable and comforting things like cushions, blankets, candles, fairy lights and nice pictures. Just spending time here, allowing yourself to rest and maybe a little meditation can be so restful. I've only been doing this a week and it feels so amazing. Every time I've done it, I've felt better afterwards and felt less fatigued. I've used her yoga nidra meditation too which is lovely (and free on her website). I highly recommend it. Particularly if you don't have people around to look after you - it can feel so nourishing to do it for yourself.

I really hope you get some relief soon.

Xx

I know what you mean. If I listened to my body I’d never get out of bed. But on the other hand my muscles tighten up if I stay in bed, get so painful and so i have to get up.  Am so sorry. You sound so low. I take a product (drink) with aloe Vera. I think it helps me. But I’m always overdoing it so difficult to say for sure with M.E. But I do know I don’t want to stop taking it

Im also trying a prebiotic called Bimuno at night which some say improves sleep. Will have to see on that one.

Am sad you feel so alone. I live alone. Only see someone for 2 hours in the evening. Wish there was something I could say to make things better for you. Hang in there, there are many like us. In US they are doing great research at the Open Medicine Foundation to “end M.E. “. and find a cure for Whitney Dafoe (see on Facebook).

Like Bettybetter said I also find having a separate relaxation area really helpful. I have a spare room I use as a relaxation room. I have a thick rug in it which I put a yoga mat on and lie down with my head on a cushion and legs propped up on a yoga bolster and pillow (having legs raised can help with deeper relaxation) and cover myself with a blanket. I find listening to yoga nidra body scans and other guided relaxation tracks really helpful as afterwards I always feel more energised. It's a bit like having a nap without being asleep!  I also have an indoor water feature I listen to as I find the sound of the water really relaxing. I have nice pictures, crystals and windchimes too. I feel it's very important to have an area with nice comforting things in it in your house when you are forced to stay indoors a lot as it can lift your spirits. Even lying with the sun shining on you or watching clouds blow across the sky can be a way of connecting with nature when you are indoors.

?You might also find it helpful to do some joint mobility exercises to help with the pain as being inactive for long periods of time will make the pain worse. You could try sitting up and lifting your shoulders towards your ears and letting them drop and circling your shoulders and wrists. Perhaps you could have a chair near your bed and try to get up and sit in it for 5 minutes so you're body is changing position. If your fists are clenched a lot you might be feeling tense. Perhaps you could try squeezing a stress ball to reduce stress and get some movement into your fingers.

?CFS can be a horrible lonely illness but it's not your fault you are ill so be good to yourself. I really hope you are able to sleep better and feel a bit better soon.  

THank you  Guys for ur replies .. and advice! Much appreciated!! 

I love the idea of having a separate comfy spot to relax in but unfortunately I live in a small bedroom and only have my bed to sit on I think that doesn’t help me sleeping but what can u do.. 

Thanks anyway and hope u all are feeling okay .. as much as u can do! 😊xxx

Just thought id give you a little message so you know they is always someone there for you even tho it maybe online.

I havent been on here for a while but reading where you put your alone so come online got to me :-) 

Many of us with M.E feel alone and im glad i found this forum as on my bad days just reading a nice reply is lovely :-)

How you doing xx