One of the things we have to deal with on a regular basis as Elin's parents is prolonged sleep deprivation. Apparently, sleep deprivation is extremely common in children with profound and multiple disabilities. This completely blindsided me as a mum of a severely disabled child. We were told many depressing facts about what life would be like with Elin following her birth, but one thing nobody told us was that she WOULDN'T BLOODY WELL SLEEP. Sleep deprivation is torturous, fact. The longer it goes on the worse it gets. In the dead of night, you silently tick off the years you have barely achieved a single night's sleep and try to ignore the silent nagging that you may never have a full night's sleep again. The whole depraved sleep pattern can feel like you are in the realms of newborn again. Except maternity leave finished years ago and life has to go on. As a result I can sometimes appear to be a shadow of my former self and when I say shadow I mean a great big blimpy, blobby shadow because to add to my list of woes I'm eating crap food and snacking all day for energy kicks.
So what can I do about this?
Nothing (Once all medical advice and avenues have been explored)
But there are some things I have done over the years that do help. Now, lucky blog reader, you are going to benefit from my infinite wisdom on the subject. Here are my top tips:
A brief guide to surviving a sleepless life
•Get yourself some proper coffee. I used to think instant was ok. I was so very wrong. It's proper coffee or nothing. Proper coffee is life.
•Eat breakfast, even if it's late. Proper breakfast type materials, not three ginger biscuits and a bag of cheesy Wotsits you started yesterday (I just plucked that example out of thin air, I swear)
•Get outside. Don't give into the temptation of staying indoors like the miserable sloth/zombie you feel you truly are. Fresh air changes everything.
•Exercise. HA!!! I know!!! I hate exercise!! But even I can't deny the endorphin-induced benefits of following Davina McCall's 'fit in fifteen' DVD. Proof positive is half term where I did nothing and felt like a slovenly hippo all week. There are billions of amazingly effective exercise DVD's out there meaning you don't even have to leave the house now so really there's no excuse, especially as Davina's in particular takes only fifteen minutes. That's gotta be better than nothing, right?? (Also, tip: It helps to scream loud expletives at Davina and her disgustingly perfect six pack while you work out)
•Stop drinking in the week (double HA!) I hate myself for even suggesting this one but I did dry January (it was as horrendous as it sounds) and I've got to be honest with myself and say I don't think the nightly 'medicinal' red wines were helping much the following morning after regular nights of roughly three hours sleep. Go figure.
•Cry. Stop bottling it up, it's taking too much energy. Properly cry. Do a massive ugly cry, with snot and everything. You deserve it! This is crap!!! Cry, dammit!! (It works, I promise).
•Accept help. If there is anyone offering you support, a bit of free childcare, a lasagne, a hug... take it. Nobody will think you're a bad mum. Nobody will think you're not coping (maybe you aren't, I know there are times when I'm certainly not- all the more reason to take it). People will only offer if they mean it. Seriously, Accept help.
•Don't be scared to tell people. Tell them you are so tired you are hallucinating and you feel like you're living your life underwater, or in slow motion and you feel you may also murder someone at any given time. Tell them how bad it is. I am still struggling with this- nobody wants to whinge. You are not whinging, you're explaining.
•Get some sleep-deprivation diversion tactics on the go. Read a good book. Take your mind off it. Watch a bit of Netflix. My go-to choices right now are 'Modern Family' for mindless warm and fuzzy 20 minute episodes of bitesize escapism, or Lena Dunham's 'Girls' if I'm in a slightly darker mood (I frequently am, hence whole reason for writing this post.)
•Listen to Spotify, if Elin can benefit from music-therapy then surely so can her parents? No annoying adverts, DJs or songs you can't bare. Listening to music has proven psychological benefits and soothing a sleep deprived mind is no exception.
•IGNORE the housework/chores! Nobody cares if the washing basket is full, it can wait until such a time as you can see straight again! Look after yourself, not your house.
•Don't feel bad about having a sneaky nap. In the evening after your tea, in the morning if your child is at school, when you get in from work, whenever your partner/mum/friend/pet can take over childcare, when you're supposed to be washing/ironing/cooking, whilst you're on the toilet- just NAP. You are NOT a slummy mummy. You're slowly going mental from not sleeping. You are no good to anyone collapsed in a heap on the floor. TAKE A NAP.
Ultimately, support and understanding, not only from each other but also friends, family and work colleagues is what is paramount in retaining your health, sanity and relationship. Don't underestimate people, most folk have experienced a sleepless night and will know exactly how you feel if you're dealing with it on such a regular basis.
That said, last night, after yet another few hours of Elin playing her favourite game of 'dodge the sleep' I predictably relented and let her come into our bed. She, equally predictably, falls into a deeper sleep than Princess Aurora the moment her head hits our pillows (though sadly even that failsafe comfort doesn't seem to even be working lately). It's beyond tiring (and not to mention tight for space- sardines in a tin, anyone?) but the truth is, sometimes its hard to feel needed by Elin as a mummy, in the traditional sense. So if I guess if I have to wait until 2am for her to really need me and only me then I'll be there every time and despite absolutely everything, I'll be smiling for her. I know how lucky I am to even have the option of having her close and safe each night. As I eventually, inevitably, watch her nod off, I wonder what she dreams about. Is she as happy in her dreams as she is when she wakes me, smiling as she always is? I hope so. I hope, in her dreams, she is free.