Please don’t wake me…

Today kicks off Sleep Awareness Week, which aims to highlight the importance of good sleep. As a chronic insomniac I am of course acutely aware of how important sleep is. I’m writing this at 4am, so I haven’t found the cure for sleepless nights. I do though have some semi successful strategies.

My relationship with sleep has flipped from one extreme to the other. In my youth I could drop off anytime, anyplace. I loved to snooze and had zero issues dropping off. I was the queen of the long lie. Sleep became a problem when I first experienced mental health problems aged 19. Unfortunately, I have never managed to regain my easy breezy relationship with slumber. Almost twenty years on I have become accustomed to functioning on a few hours a night. Chronic pain has done little to aid a peaceful night, but an inability to calmly shut down is still a major obstacle in my quest for rest.

A decent night’s repose can affect everything from heart health to sex drive. It goes without saying that exhaustion also has a massive impact on mental health. The NHS advises that most of us need around 8hrs sleep to function properly. In fact, lack of sleep can so massively impair cognitive faculties that experts suggest driving after only 5 hours sleep is just as dangerous as driving drunk. Everyone should be mightily relieved that I cannot drive.

The long-term effect of insufficient sleep is grim. The anxiety of going to bed each night knowing achieving sleep will be a battle is wearing. The more you worry about not sleeping the less likely it becomes. Constant fatigue makes getting through daily tasks difficult, which adds to one’s stress levels. This in turn pushes that magical 8 hours even further out of reach. Long sleepless nights are lonely. There’s rarely anyone else awake leaving a busy mind way too much room to mull over worries. Throw pain into mix and you have a recipe for despair. Moving through the world in a worn-out shuffle will grind you down, which is why I offer my extensively tested tips on getting some god damned sleep.
I’m not going to waste your time with milky drinks and lavender under your pillow. Everyone knows the basics and they aren’t going to cure hardcore insomnia. I don’t have a failsafe solution, if I did, I’d snoring now. However, these are the things that I have had some success with over years.

Bedroom Tips

Keep your bedroom cool. Lowering your body temperature helps the body prepare for sleep.

In theory that’s why a hot bath should aid sleep, but I find any sleepiness gained from the temp drop is lost during the process of getting dry and organised for bed. If you do less faffing post bathing it might work better for you.

No tv in the bedroom. This is a definite for me. I find a television to be the opposite of relaxing. I need my bed and bedroom to be a completely chilled out zone. Which sits nicely with my next point.

Try to make your bedroom as pleasant as possible to be in. Obviously, that means different things for different people. For me it’s nice sheets, subtle scents, comfortable mattress.

Black out blinds are your friend. I could not live without mine.

Invest in one of those huge maternity pillows. They give so much support if you have back or joint pain. Plus they’re just super comfortable.

Sound Effects

Rain on window

I use sounds machine apps. I like heavy rain/ thunderstorm type sounds, but experiment and see what works for you. Something about being safe & protected from the elements I’m hearing sometimes helps me drift off.

Soothing music (whatever that means to you) at a low volume can also help. I like to mouth the lyrics and focus on words I enjoy rather than my own thoughts. Getting the volume just right is key for me, so again, you might need to experiment. Select specific songs and make a playlist beforehand. You don’t want anything that unexpectedly bring unpleasant or stimulating associations to mind.

Preparation

I should probably have started here, but lack of sleep melts your brain. So, you’ll have deal with my disjointed thinking.

These are all evident. I’m going over them because sometimes you miss the obvious when you’re knackered.

Don’t eat too close to bedtime.

Don’t watch, read or listen to anything that will bring up stimulating emotions (nothing scary, disturbing, sad, triggering etc).

Avoid arguing or deep conversations right before you hit the hay.

Smoking, caffeine, some meds (check with gp/pharmacist) are no goes before you attempt sleep.

Against Accepted Wisdoms

Sleeping cat

I’ve consulted many Drs, Psych’s and other practitioners over the years and some of the oft repeated advice they’ve given me has turned out to be just plain wrong for me. If you find something that really does or doesn’t help, even if everyone is telling you the opposite, do you. For me this includes:

Looking at my phone in bed. Putting it on night shift mode to alter the light tone to yellowish rather than blue is a must. Otherwise I find aimlessly scrolling can be very helpful in getting me sleepy.

Reading in bed also works for me. I can’t fall asleep without reading. I find that if I just keep going until I literally can’t keep my eyes open, I have a good chance of getting into a proper sleep. I think it’s because my mind is occupied with the content of the book rather than whatever mess is in my head. Clearly, it’s important to choose the reading material with reference to my previous points.

Sharing the bed with pets. So many people have cautioned me against this. I find my petting my cat and hearing his purrs excessively relaxing. Thus, I ignore such warnings.

Hippie Dippie

Constellation lamp

I hate to be that person, but occasionally the esoteric route gets you there.

A constellation lamp in a dark room can offer something uncomplicated to focus your attention on long enough to get to sleep.

Gentle yoga – clears the mind & stretches everything in a pleasing manner.

Desperate Measures

When you’ve been attempting shut eye for hours and are reaching the point of hopelessness; get up. By that point you aren’t going to sleep. Every toss & turn just raises anxiety levels. I find it much more productive to get out of bed and stop forcing it. Do whatever you can manage and if you get drowsy try again.

Medication – You need sleep to operate. There comes a point when discussing medication options with your Gp is the sensible thing to do. I have tried several sleeping pills over the years. Most didn’t work for me. Most are not a suitable for prolonged use due to addictive and/or tolerance building properties. There are some drugs that can be used for longer periods. I have been prescribed one such medication. It doesn’t have a 100% strike rate, but when it does work it knocks me out all night.

Sleep when you can in extreme cases. Often napping is counterproductive when fighting insomnia. However, when you haven’t had more than a couple of consecutive hours sleep in weeks that goes out the window. When my sleeplessness is at its worst, I will get so completely exhausted that my body will crash. That doesn’t always happen at bed time. Take that sleep. You need it. Sleep all day if you must.

Last but Not Least

Oxytocin

Sex and orgasms in general are brilliant for sleep. Sex works on so many fronts. You can tire yourself out, all those feel good hormones chill you out and of course it’s the perfect distraction from any negative bullshit you have going on. Flying solo releases all that lovely oxytocin and melatonin too, so don’t be shy about giving it a try.

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My week (ish) in pictures…

I’ve not been the busiest of bees. I’ve had some minor illnesses dragging on & that has slowed me down. Thus my outfits are slouchy & my snap shots somewhat indolent. 

I’ve caught my city looking pretty in the sun & also the pouring rain that soaked right through to my knickers. There has been a lot of resting with Bronan. Plus plenty of time wasting selfies. 



I visited mum & her beautiful poodles, indulged in comfort food & noticed some lovely details on familiar buildings whilst the toy boy bored me with football. 


There has been nail painting, anti biotic gobbling & languorous layering of clothes. 

I was awoken by the toy boy’s kitten grooming me with her very tough tongue. Luxuriated in Joan Didion’s words & expressed some opinions via my badge collection. 


And just like that I give you the life of a procastinating freelance spoonie.

Let’s talk it over…

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world. 

Fear of the cold…

I’ve been having a sickie few weeks thanks to a new medication. So, when I woke up on Saturday morning with a calm stomach I put some bright pink lippie on & hit the town. 


I say town, I actually mean I had a bit of lunch & saw a film with my sister. Baby steps, right?

I opted for layers as it’s sooo cold outside. I adore this lace maxi & teamed with a velvet mini it could withstand November in Glasgow. 




Lace Maxi – Forever21

Velvet Mini – Asos Curve

I tried out Zizza’s vegan menu & was impressed. Unfortunately, my stomach wasn’t really ready for all the yum & I’m back on the soup. I’ll definitely return  when my body & I are on more friendly terms.