My insomnia and sleep kit!!

As my post on my emergency kit was so popular I thought I’d share with you another “kit” of sorts – my insomnia and sleep kit. 

I’ve suffered with insomnia now for many years. I started with one or two nights a month, then it became a week. That then crept up until it was what it is now which is I’m up most nights and even my “good” night’s are still not what most people call good at 4-4.30am!! Good night’s are rare though having maybe 1 or 2 a month if I’m lucky!!

It should come as no surprise to anyone that my insomnia doesn’t fit the norm for a few reasons. Firstly I have very little problem actually falling asleep, it’s staying asleep that I have issues with.  I have tried sleeping tablets which don’t work, I’ve tried various different routines but to no avail: I just don’t sleep well. It could be that I with EDS you have access adrenaline, it could just be the way I’m wired or I could just be weird and not sleep (that wouldn’t surprise me)!!

I must say I do hate the term “sleep hygiene” I don’t know of it’s just that it seems a stupid term to me (hygiene doesn’t seem, to me, to fit) or that I’ve just heard it so often that it seems to have lost all meaning to me but I don’t like it at all.  When I say that I’ve tried different routines, I mean it. I’ve tried no screen time before bed, no caffeine after certain times etc but as my problem isn’t falling asleep these things make no difference. One thing that I haven’t tried is making my room darker; but that would have the opposite effect on me (keeping me awake) because I’m very afraid of the dark!! I’ve even tried training my body to wake up with an alarm by setting it earlier than I normally wake up then when I am always waking with the alarm the theory is you move the time by a little at a time and your body gets used to it. However with that my alarm would always go off when I was already up, if I moved it any further forward I would have been setting it less than 2 hours after getting to sleep!! Not ideal!!

So I will share with you what I use, first to get to sleep and then what I use to while away those sleepless hours  (and i now have the wizzard of oz song stuck in my head, you know “I could while away the hours confirrin with the flowers ……if I only had a brain” you have to love where my brain goes!!!

OK, so first……

Olbas oil – I have sinus issues and am always stuffy, so because of this I sleep with olbas oil on my pillow to keep my airways open a little more!!

Audio book – My books of choice at the moment (and pretty much all the time) are the Harry Potter ones. Stephen Fry’s dulcet tones are soothing and I have listened to them so much I upgraded them all from cassette to CD and am now having to replace the CDs as they’ve worn out too!!

Headband headphones – I have a wonderful set of headphones which are a headband. They’re soft and stay on and don’t hurt my ears when I lie on them. Mine are…..

Bed wedges – I currently only can afford the two for my legs (as my single bed needs two for my mattress to cover them) but I need two more for my head too. I get very swollen legs and feet so having them up at least helps them to go down a bit overnight. I also get the benefit that I cannot turn over with them on my bed, I used to be a wiggler (my dad used to find feet on pillows and me in all sorts of different positions when I was little and he used to wake me up) but with all my problems it’s so painful to wake up after having wiggled my way through the night!! But also I sublax my joints and dislocate them so easily, before the wedges and when I just used pillows my legs used to roll off them and it wake up with very painful joints. Now I still have some issues with dislocations but nowhere near as many as before when it was more or less every night!! When I can afford my head wedges hopefully will help my bad acid reflux and also help ease my POTS symptoms too, but they’re £26 each and as I again need 2 it will be on my list of equipment I need!!

Long pillow – This is a follow on almost from my wedges, as my pillow restricts the amount of space in my bed so stopping me moving around. But it also is good as my bed frame leaves a gap down between the wall and my mattress, so I can’t drop anything down or get my arm stuck (yes that has actually happened!!) I also use the cushion to put my CD player on as it stays out of my way then.

Splints and compression gloves – With carpal tunnel syndrome I have to wear splints to bed to keep my wrists from moving too much. If I don’t wear them I wake up with numb fingers and don’t get the feeling back all day either!! The compression gloves are for my finger joints and swelling, the hand therapist prescribed them for me and they don’t help a huge amount but do slightly! 

 These were my old longer ones which hopefully when my appointment with the new hand therapist happens I will actually be able to get again!! But hand therapy is another story altogether and so is for another time!

Incontinence sheets and others – There had to be some in there somewhere didn’t there!?! Unfortunately these are a permanent fixture of my life until or if I get sorted out and am allowed a catheter!! I find that the children’s ones are slightly cheaper, the place i get them from has just changed them so aren’t quite as good as they’re longer now but are necessary so I use them. I’ve had to invest in a waterproof sheet, and then on top of that have the incontinence sheet. My incontinence is so bad I need the horrible incontinence pants AND a pad and the bed sheets, it’s not nice and is sweaty and uncomfortable but as I said they’re necessary for the time being at least

Fan (in the summer) –  In the summer to help with my temperature I have to use a fan. I invested this year in a taller floor standing one which helped as I could adjust it to be directly on me. I have to have a cover over me, I cannot sleep without even if it’s just over my middle it needs to be there. But that can obviously make me extremely hot!! Also with my POTS symptoms and poor temperature regulation I find a fan a necessary part of kit. I also like the background hum it makes!!

Window open – OK so not strictly a piece of kit but I need fresh air and a little background noise to help me sleep (even though I have hayfever and you aren’t supposed to have windows open but I feel really hemmed in if I can’t have it open)

My awake kit….

Blanket –  During the winter I have a blanket behind my couch so that when I’ve got up in the night and it’s cold I can wrap up!! I’ve got one with the feet in because my feet are the most likely to get cold!! It’s also really soft so sensory wise if I have had a not so nice dream I can use the blanket to calm down (stroking it like I would a dog if I had one!)

Box sets – I am a box set junkie I think, I have a lot of my favourite shows on them and when I’m awake I work my way through them. Early morning TV is not the best, finding any thing on is nearly impossible but I have my box sets which means I always have something to watch. Currently I’m indulging my sci-fi geeky side and watching star Trek Voyager but I have a lot of other ones which I can watch depending on my mood at the time!! Other people say watching the TV isn’t good when you try and go back to sleep, but I can settle straight back down to sleep if I want to!

Hot drink – As explained before I use a mini kettle and travel mug as I cannot make myself one without them (not even then sometimes though, see story later!!) I have to admit I do have a coffee (after the experiments to see if it was this keeping me awake) because I love it, I couldn’t drink a hot chocolate as I can’t have that this early in a morning but for me my drink of choice is coffee. Often in summer I also have water but at the moment it’s too cold!!!

Not too bright light – This is essential for me for a few reasons.  My Irlens syndrome means that I see lights brighter than they are anyway and so a brighter light hurts my eyes. A brighter light would wake me up and stop me from dropping back off to sleep later. Finally a brighter light would be more noticeable upstairs and so disturb my parents, which I definitely don’t want to do (well any more than coming down the stairs and being up a lot of the night do!!)

Snacks – As I’m up for a long spell during the night my brain tells my stomach that it’s actually breakfast time, as it’s not I need something that isn’t too fattening or big but satisfies my hunger pangs!! I have a few things that I can have but the one I tend to go back to is pretzels!! I have giant ones and just have a few, they are good as are low ish calorie wise and just satisfy that hunger pang without having to munch the entire bag!!! 

Tablet – (because it doesn’t affect my going back to sleep if I want to later!!) I’m lucky that the tablet doesn’t seem to affect my sleep, I can play games on it and fall asleep straight away after. I usually just play a word finder game that just gives me something to do!! 

Notepad – Because my brain fog is so bad at times I usually have a notebook next to me at all times anyway. While I’m downstairs, or even upstairs before I go to sleep, if I think of something I need to remember to do or an idea for my blog etc if I don’t write it down I tend to dwell on it desperate to keep it in my mind before it disappears in there never to be seen again!! If I write it down I know I’ll remember it and so don’t need to think about it again. The idea for this post was an early morning thought and I was very glad of my notebook to write it in.

So that’s my kit. It’s not an exhaustive list, it’s most of my regular things but can vary depending on my mood or the night. Yours will be what works best for you. What do you have if you’re awake? Do you do bits to keep you from getting bored? Perhaps comment below and share anything that you have that helps you to get to sleep.

Ok so before I finish I thought I’d share another couple of funny brain fog moments with you (well it wouldn’t be my blog if I didn’t have some brain fog moments), or at least I was going to but no word of a lie I can literally only remember one of the ones I was going to share.  If I remember the other I will put it in another post. This morning’s moment…….I went to make my coffee this morning, I went to get my kettle and cup – got my cup out and went to fill it up, erm no I thought I need my kettle so put the cup back in the cupboard and got my kettle, then proceeded to look for my cup…..lol moment right but that wasn’t it, I took a tablet and put my milk back in the fridge and still needed it for my coffee?!? I seriously still can’t remember the other one, but I’ll share another funny moment instead. I was opening a parcel the other day and realised I was talking to myself, on realising this I then proceeded to talk to myself about how silly it was that I was talking out loud to myself…..but we’ve all done that though, right?!? 

So in the spirit of sharing and making us all feel less alone in our madness what do you feel is your funniest lol moment?? Or why not share with me your essential items for sleeping? Hope you sleep better than me, but if not hope that these things might help you build a kit that works for you!!

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14 thoughts on “My insomnia and sleep kit!!

  1. I “sleep eat” so even though I am sort of awake, I go and get food. In the morning I often wake up to find food half eaten. But I have no recollection of getting it.

    And I talk to myself in this really weird voice when I am getting food.

  2. I have EDS as well so can relate a lot to what you say about sleeping and needing cushions to keep me supported a fan clipped to end of bed as get very hot due to Dysautonomia issues but pain and nausea keep me awake at odd times. I have a hospital bed so can raise the head easily or feet, best thing ever. I have a laptop by my bed which is lightweight.

  3. There was a time when I got really stressed and found it difficult to sleep. Mindfulness meditation audio recordings really helped me to relax and improve my sleeping patterns. When are you starting your hand physiotherapy?

  4. This post reminds me to be thankful for being able to fall asleep without having any issues with insomnia. I am glad you are able to get comfortable enough to sleep even with some help.

  5. Ahhh not sleeping is the absolute worst! I get about 4 hours a night in and have tried everything! it makes me constantly tired, unmotivated and unproductive! Mine is getting to sleep once I am there trust me I can stay there! x
    Lola Mia // http://www.lolitabonita.co.uk

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