CFIDS May Topic- Sleeping zzzzzzzzz

What strategies do you use to help you to sleep at night. Here is my response to this months topic.
I love to sleep and used to be able to sleep so well, I miss it badly.
I had to sleep recently with my sister and she said that I went from asleep to awake instantly as if I wasn't really asleep at all. I do think that solving the sleep deprivation problem we all have would go a long way to making all our other symptoms much better.
apparently if you deliberately stop people going into a deep sleep after a few nights they will get all the symptoms of fibromyalgia.

I used to use valerian to help me to sleep and found it very effective although I do think it lost efficacy over time. Since I have started taking cymbalta my consultant has said that I can no longer use it.

I understand that Dr Jacob Teitlebaum has a combination sleep remedy which looks interesting and I would certainly try it if I wasn't taking cymbalta.

I have recently started taking clonazapam only a quarter at night but can't say if it helping or not as I don't think I have had a normal week for some time to make a proper judgement- I did try to up this to half a tablet but found that I could not get up until about 2pm from extreme fatigue which is not really getting much quality of life.

On a COPE pain management course we talked about good sleep hygeine which involved looking after your comfort- I have a really good mattress- a Dorlux Marquis king size which has a built in topper- and use lots of pilows including a body pillow. I decided against a Tempur mattress because I had heard that can make you a bit sweaty and I get hot enough at night.

I use a heat pad for pain releif and to keep me warm and a Chillow pillow in the summer if I am hot. I also use a Remedi pain releiving device for half to one hour while in bed it helps with pain releif and relaxation.

My bedtime routine is to go to bed between nine and ten in the evening and will probably watch some light television or play a game on my ipod like bejewelled and of course sorry to go on about it but if I am not sleeping or to wind down I will listen to a podcast or a talking book. My favourite at the moment is a free podcast by alistair McCall- Smith called Corduroy Mansions which I am sure is not meant to be so boring but it can send me off to sleep- I have not managed to get beyong chapter 12 yet!!

I also have a CD called peaceful sleep by Jan Sadler on my ipod as well as The Soul of Healing Meditations by Deepak Chopra and various free podcasts of relaxation and meditation.

So I seem to have an army of strategies but of course unfortunately still have many nights when I don't sleep beasue of pain and discomfort or wake up with bad dreams and pain. Some nights I just get up and abandon all attempts to sleep go and have a cup of tea watch a bit of TV on my own and go back to bed a few hours later.

The most annoying aspect is when you have slept but wake up feeling as if you haven't slept a wink. I have no answer for this but just take eaxh day as it comes and if it has to be a duvet day then so be it.

The most annoying aspect is

Gadget Babe

I do really love a gadget my favourite one being my ipod but I like to find other things not as expensive to make my life easier and more interesting or just for fun.
Here's my list of top gadgets:
Ipod Touch- not only can you listen to music and podcasts, I have talking books meditations, films and games on it. hours of fun and distraction. Am completely addicted to bejewelled an application to add onto the ipod.

Nintendo DS- I don't play on this so much now becuase of the games you can put on the ipod but like 42 card games for solitaire games and Professsor Leyton puzzle games as well as brain training- goota keep the brain working somehow.

Nintendo Wii trainer- Ok the only one I am top at is the sitting down meditating but it does get you moving in a fun way although cannot master ski action and watching other people try to hula hoop is a just hilarious for some reason.

Remedi Pain Relieving Device- like a TENS machine but more powerful and you place the pads on your spine to block the pain signals to the brain. I don't find it works so well for pain above the neck but it does take the edge off the pain and the Remedi Company are always extremely helpful with repalcements or repairs in fact I now have a spare one that I was able to purchase at a cheaper price.

Tempur cushion- this is a very soft cushion that I made a bag for so I look like I am just carrying around a bag which I then sit on. Very useful to increase your confort in restaurants, pubs so you can stay longer only criticism is it is a bit heavy so I had to make a more manly bag for it ie brown instead of orange flowers so that my hubby will carry it for me.

First Class Sleeper- this is an inflable cushion that goes behind you to increase the comfort while on an aeroplane. It was invented by an airline pilot and makes airplane seats and other seats much more comfortable by giving more support behing your back and neck.

Electic Heating Pad- bought this for about £10 in Lidl but they are about £20 lovely to give heat where there is pain or just to warm up the bed. I keep one upstairs and one downstairs. Blissful heat.

Wheat or Rice Pack- Have made several of these using a tube of material half fill with rice and add some dried lavender. If you don't know how to use them they just go in the microwave for two minutes and are lovely and warming for pain. I particularily like them for facial pain as they can be held around the face for good pain relief.

Multi-adaptor- when I go away anywhere I take an adaptor with me as I have so many gadgets to plug in and you never know how many sockets will be in your accomodation whever staying with relatives or hotel.

Woollen wrap or cardi- have a lovely woolie wrap that can make sure you keep warm I find can get increased pain levels if get suddenly cold or also double up as a pillow or cushion. Its all about comfort.

Asking For Help- Again and Again

Am now on my third day in bed am coping Ok with it but it brings me to this dilema. Having to rely on others to help you by bringing you refreshments, medication, water or other things because you either just cannot get out of bed because you are just too tired or have got a bit low and bed is the only place you are comfortable.
I sometimes feel like Miss Haversham shut away in the attic with no visitors the worst being knowing there are people in the house and they don't come near or by you. Maybe you don't have this problem but its hard to have to keep asking for help without feeling like you are whining or getting cross. I don't really know the answer to this one tried to bring up what I need myself and think about having another talk with offspring about needs. I guess they don't like to think that you are poorly and would rather close their eyes to the fact and think you are just having a lazy day in bed.

I think it is because the nature of the illness is to be invisible so you don't look sick and in the main you behave as if you are not sick so it seems to come as a surprise that you might need help after all you are the Mum.
Tomorrow will be better will try to get up and go out.

Duvet Days

Have just had a day in bed yesterday where although wanted to get up just couldn't from fatigue and pain so settled down for a day in bed.

I try hard- not always successfully- to keep my bedroom a haven where I am as comfortable as possible and have things around me to amuse and entertain me.

I have pretty PJ's or put on comfy tracksuit have plenty of water and few snacks to keep me going in case no-one around to bring me any.

Unless it is a day where I know that sleep is the only thing to do I open the curtains so I can look out at the trees in the park behind my house.

I have a kind of toolbox as recommended on http://www.painsupport.co.uk/ps_home.html.

Anything I think will make the time pass in as happy a way possible:
Happy DVD's, My Ipod and Nintendo DS for listening to music, podcasts or playing games, my notebook for jotting down ideas, my lists of plans for the future.
I might ring someone if I feel up to it or text if I don't just to make contact with the outside world. I might go on my laptop if I feel up to it to pass a bit of time send emails, look up things that interest me. I also like to write a few cards or letters but sometimes am not in the right frame of mind for this.
I had a lovely day once when my daughter joined me and we had a beauty day. Doing each others nails, having a facial and meditating. So I might do this on my own if no-one around.
I do like to have visitors and leave my door open for that but I don't always get them and sometimes feel like the mad auntie locked away in the attic. It is hard if there are too many of these days but I try not to let myself get stir crazy and stop myself from having too many negative thoughts. I've had days like these before, I've coped with them and I will get over them. What do you do to cope with duvet days