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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Had the 2nd half of the rituximab infusion today ( actually yesterday . Can't sleep so still feels like today!)
I'm stuck in a horrible not sleepy but too dizzy and weak to move from bed feeling. I've read, tried tv but all very violent or that freadful channel advertising the 'aahh bra' for ONLY £60! I'm using my phone to get on the site but not very goodat typing like this!
What do you do to keep you sane when you can't sleep? I promise to try out all reasonable suggestions!!! Xx Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
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Hi Ailsa, Good question and one which we all ask at times when RA and its lovely treatments keep us awake at night. Have been awake since 4 this morning, sorry I should have come on here before  When not feeling up to getting up and moving (which I eventually do to avoid waking up other half) I find: listening to the radio with a little in-earphone (Radio 4 extra is quite good, drama and comedy - can help me back to sleep) music I find keeps me awake or wakes me in the first place. News can be depressing! If all else fails I make a warm drink in microwave and sit in lounge with the fire on and watch a film on DVD or one we have recorded I'm thinking of putting some Amazon vouchers towards a Kindle to read books on. Finding my hands just cant handle a proper book any more, especially at night. Do hope the Rituximab will help you and the side effects will subside (wakefulness is probably due to the shot of steroids they give beforehand). Ihad two infusions in October and was pretty uncomfortable for a while afterwards, but this is settling and I am keeping fingers crossed it may work this time. I got up after an hour this morning and planned the meal menus for the next 4 or 5 days and wrote them down - hopefully I wont be planning them in my head so much now! I do feel writing stuff down helps a lot. Christmas is so busy and with 10 of us here the RA is not helpful at all! Do take care and I hope you got some sleep eventually. Happy Christmas! Love Lizx
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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The night before last at 3 am, I made myself a cup of tea and then played a mindless game on my computer.... then my son came home for his 'evening out' (at 3.30 am!!). Then went back to bed.....
Sometimes I watch something on TV that I've recorded earlier... always make a cup of tea
Usually use the computer... my sponsored child from the Philippines, who is now 20 years old and has a baby is sometimes online (via facebook) so we have a conversation!
I usually do have to resort to an afternoon sleep after such a night.
If anyone has any other good ideas, I'd love to hear too.
Hope you get some sleep Ailsa tonight.
Anne xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Ailsa, I have recently been trying lavendar oil on a hanky on my pillow which seems to help me relax. Also if i am desperate i use a relaxation cd (meditainment from Amazon), down loaded to my mp3 player. I also have a 'little book of calm' which i have had for years which has some good tips in. Could your occupational therapist help with any suggestions, i have recently found out that they can help with sleep problems. Best of luck, take care. Bevxx ps i have just remembered i drink camomile tea as well before bed. I do sound a bit neurotic i know!! 
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I also listen to the radio with my ear buds in. I like a talk station as listening to others talk stops my head from buzzing with things! Are you well supplied with pillows? To cocoon you? Take a hot flask up to bed so that you don't have to get up for a cuppa. I would also suggest 2 paracetamol but as i don't know what medications you're on obviously i don't know if paracetamol is okay for you. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I always dig out the old kindle and read - or listen to radio 4 on the headphones.
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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radio with earphones for me too if Ste home
or read on kindle if he's working away and I can get away with having lamp on
Diane x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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I have a herbal tea before bed, it's called would you belive.....Night Time tea! But it's really good and I'm sure it helps me sleep, that and at least half an hour reading a good book in bed.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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I have heard that ginger, in any form, before you go to bed helps but not sure how true this is. Worth a try  Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 119
Location: warrington
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Hi Ailsa,
Was wondering how you were after your infusions. did everything go as planned?
I am having problems sleeping at night, feel tired when go to bed but then ping feel wide awake itchy and uncomfortable. hubby steve getting a complex seems like as soon as he comes to bed i get up. wish i could sleep as during the day feel ratty and nod off.I always make myself a cuppa and put something on from planner i have recorded earlier.
sue v
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I went to Bath Hospital for Rheumatic diseases for a time and one thing when I was there was their "sleep hygiene" course as part of the living with chronic pain they do
its designed mainly for people with Fibromyalgia
they did progressive muscle relaxation there with guided imagery. If you know me on here I am never an advocate of anything remotely "hocus pocus" and this sounded vaguely dodgy but it really worked so well.
There are various ones you can get CDs of, I have downloaded one on my i-pod called "the beach" and its lovely.
Other tips of going to bed at the same time (whether you sleep or not) and not trying to stress over not being asleep were a help. Not watching TV in bed or doing the computer too late. no sleep anyother time or if you MUST under 20mins... set your alarm...!
that sort of thing.
Here is a handy leaflet
http://familymedicine.tu...u/pdf/Sleep-Hygiene.pdf
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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I`ve tried listening to music via my ear-phones, but find I can`t wear them for long, so one of my sons got me one of those pillows you can connect to your i-pod, and it`s great. The music`s not too intrusive,so I usually listen to something relaxing, or drift off to the rich velvet tones of Andrea Bocelli.......................sigh! Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 357
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I listen to up all night on Radio 5 Live, they have a wide range of topics, such as books, music and science. Also keep the kindle handy to have a read too. We'll have to set up an NRAS Members up all night club :) Jo. xx 2012 Fundraising for the National Rheumatoid Arthritis Society (NRAS) http://uk.virginmoneygiving.com/RoboJo
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Thankyou for all the suggestions - I suspect I will be trialling them for a while! I've got a chest infection now and an proper out of sorts now  Jenni - the sleep programme sounds good - I will have a proper look later but thankyou for all the suggestions. Sorry you are not sleeping better Sue - at least I don't have to share my bed so I can wriggle and and humph all night if I need to! It's very comforting to find someone else up in the night - I'm up for a late night meet-up! Wishing everyone better nights and happy days xx Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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This is what I do ... but alas I am now even more awake than I was before!! Sigh ... ... Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Come on Lyn, are you bouncing liike your badger or helping santa get ready for next year?????
Fancy flying over the chimneypots . Anyone would think you were well.
Take care Have a Good NEW YEAR Anne
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