It’s like one of those bad b grade horror movies where the main character wakes to a voice on the phone rasping “It’s 3am. Do you know where your daughter is?”
Except I’m the daughter, and I know very well where I am. I’m in the living room folding laundry. And yeah, it’s 3am. I wish I could say this was a rare occurrence.
*disclaimer. I wrote parts of this post at 3am, and parts on a day when I’d had two hours sleep. There may be small sections of complete gibberish.*
Maybe it’s more like that moment in the movie when you realise the phone call is coming from inside the house. It’s my own brain who’s the killer behind the curtain.
I’ve always had problems sleeping. There’s been periods in my life where it’s been kind of ok, but with the development of Ankylosing Spondylitis, Fibromyalgia, Restless Legs Syndrome, Persistent Depressive Disorder, Generalised Anxiety Disorder, and Post Traumatic Stress Disorder (am I not a beautiful medical cocktail?!) – I guess you could say things got a little tougher. (I’ll explain what all these things are in a sec)
I know I’m not alone. Sometimes I put out a call on Twitter, with the tongue-in-cheek hashtag #insomniacsanonymous. I get a ton of weary replies within minutes. Zombies, raise your hands. It’s been called a global epidemic and I don’t think that’s hyperbole.
Insomnia, whether temporary or persistent, can have many causes. There’s four stages of sleep.
As I said, for me the problem is manifold. Firstly, I’m in pain – and it gets worse when I lay down. One of the many lovely manifestations of Ankylosing Spondylitis (inflammatory arthritis) is it makes you exhausted, and it makes resting too long feel like you’re shoving hot knives into your spine. So most of the time, I find it very difficult to get comfortable in bed.
Fibromyalgia is a central nervous system disorder characterised by a long list of enjoyable symptoms. Along with chronic widespread pain and allodynia (heightened and painful response at certain major pressure points), it includes insomnia, fatigue, joint stiffness, digestive issues, and cognitive dysfunction. It frequently coexists with depression, anxiety, PTSD, and RLS.
The central symptom of fibromyalgia, namely widespread pain, appears to result from neuro-chemical imbalances including activation of inflammatory pathways in the brain which results in abnormalities in pain processing. The brains of fibromyalgia patients show functional and structural differences from those of healthy individuals, but it is unclear whether the brain anomalies cause fibromyalgia symptoms or are the product of an unknown underlying common cause. Some research suggests that these brain anomalies may be the result of childhood stress, or prolonged or severe stress.
Restless Legs Syndrome is an extremely uncomfortable neurological disorder like Fibro. It’s difficult to describe, but it’s like a constant pulling sensation in my calf muscles and pelvis, and I have to keep getting up to move and stretch them out. It makes getting to, and staying, asleep incredibly difficult.
There’s now medical evidence to show that patients with Fibro simply don’t sleep like other people. We rarely manage to achieve sleep stages three and four. This means our actual neurological ability to deal with pain changes dramatically.
Experimental studies have shown that when people are deprived of sleep they quickly get a lower pain threshold and higher levels of certain markers of an inflammation.
…researchers found out that sleep problems constitute a major risk factor for chronic muscular and skeletal complaint.
The connection is really strong. For those who are over 45 years old and admit to frequently or invariably having sleep problems, we see a quintupling of the risk of developing fibromyalgia, as against persons who sleep well.
The new term on the block is ‘semisomnia,’ which is not total lack of sleep, but ongoing low-quality rest that effects our ability to function. It’s caused by heightened stress levels which don’t allow us to sink deep enough into REM sleep. Some reports are linking it to our constant connection to screens. (She types on her screen). I think there’s some merit in this idea. Our lifestyles have changed dramatically in the last few hundred years. We don’t go to bed when it gets dark and get up when it gets light. Maybe our bodies haven’t kept up with technology.
Then there’s depression, anxiety, PTSD. What part does all this play? Generalised Anxiety Disorder means your cognitive worry patterns are pretty damn ingrained, and PTSD, for me, means my “fight or flight mode” is pretty much permanently on. That triggers a slow steady release of adrenaline into my bloodstream, which makes it a liiiitle difficult to relax. I’m trying to sleep, and my brain is yelling “DANGER DANGER.” This doesn’t stop when I finally do fall asleep either, which leads to nightmares, restlessness, and general low quality sleep.
And yes – I’ve tried everything. The psychotherapy and physiotherapy I am doing now is making a massive difference. As far as all the usual sleep hygiene rules, warm milk, drops of lavender – it’s as much use as a duck in a downpour.
How do I continue to function? What effect does it all have, when not only am I not getting the traditional required 8 hour average – any rest I do get is close to useless?
If you’ve ever tried to stay up for 24 hours you’ll know – the less sleep you get, the more distorted your brain becomes. The longer you’re awake, the worse it gets. My mental and physical health spiral very quickly.
I have considered the fact that maybe my Circadian Rhythm is just totally bogus, since sleeping during the day seems to come a heck of a lot easier. Maybe I was meant to be born in the UK and someone somewhere messed up.
I tend to romanticise the idea of working late at night, because… well, it makes it far more palatable that I’m awake by myself at 2.30 writing some ridiculous thing or another, which seems genius at the time but is utter dribble come morning.
(I have just spent the better part of two hours looking for an amazing comic that demonstrates this point perfectly, in which a woman writes something about a refrigerator and a cake and is certain it is the best thing ever, but can I find it?? No. You will just have to trust me.)
The reality is, I don’t do good work then. I would much prefer to have a normal sleep-wake routine that allows me to associate with other people going about their normal sleep-wake routine. The further I move away from that, the more difficult I find it to cope with my depression and anxiety. The more I worry about being able to going back to work fulltime. I may have to accept that I’m not going to be a 9 to 5 person. The internet might be keeping us awake, but it also makes working whenever and wherever a reality.
At the moment, I keep things in check with, as I said, psychotherapy, physiotherapy, and a mixture of medication I’d rather not be taking, but I have accepted as necessary for now. Eventually I hope to manage my illnesses pill-free. In the meantime, I envy those who drop into Stage 4 seconds from hitting the pillow.
Maybe I should just stop inviting Party Cat into the bedroom.
Yes, to some degree I can relate to what you write here, Sarah. It shows what some of us put up with, have to cope with, and cannot simply change or switch off, as it is part of our conditions.
What I would in all well-meaning though suggest to you is, to not share too much of what you go through. I know you are a courageous, open, honest and sharing person, but sadly, the way our society is moving, the things that some of us suffer, and what we are concerned about, is not really understood and shared by so many out there.
There is ongoing conditioning, brainwashing and so forth going on, some even in the name of “science” and supposed “evidence based research”, which is not the whole truth.
I sense you need a venue to let off steam and feelings, and this is appreciated, but be careful, all you publish, may one day be used to actually get back at you, and not give sufficient consideration of what you have to cope with.
Please do not interpret this as “defeatist”, I have gathered ample own experience, and what may appear acceptable and shareable these days, may in coming years be labeled in ways that will not be helpful.
Take care of your health, physical and mental, and do NOT let anybody, WiNZ, MSD, ACC or agencies of whatever type, pressure you to do what they see fit, do demand and insist on your rights, and work with whatever may be offered, in YOUR time, at YOUR pace, and demand what you need also, in support.
While I appreciate you are trying to help, I have had this sort of “advice” from well-meaning strangers before. I do not ask for, need, or appreciate it.
I am an intelligent and experienced person. I know exactly what I am doing here. I make a decision about how much I share, and I consider it very carefully before I press publish. I know what the implications may be, now and in the future, and I am not afraid of that.
I consider it a massive goal in my life to be the most authentic, compassionate person I can be. This often requires being vulnerable. Yes, people have used this against me already and will continue to do so, but I am strong enough to withstand that.
I had experience with someone earlier this year who tried to intervene in my life and gave me the exact same advice, in the exact same tone you are using now, and I do not appreciate it in any way.
I know, better than anyone, how to take care of myself. I don’t let anyone pressure me – surely that’s obvious from my online presence and my public fights.
My website isn’t a “venue to let off steam” and saying so diminishes what I am trying to do here. It is a form of activism and it means a lot to many people, not just myself.
I have no intention of changing what I am doing.
Well apologies, I appreciate your courage and determination.
I presume I am too negative, and tried to raise some concerns, as I have had a fair bit of negative experiences, so I should not have tried to preach or otherwise discourage you.
I take your point and some of the commenters’ below, but I do not accept any insults, as some do not seem to understand where I was coming from. Maybe I used wrong wording, and thus create confusion and also send the wrong message.
At least it has caused some to comment, which did not happen before.
I will move on and reflect on matters.
That’s preeeeeeeeeeeeeeetty condescending. Sarah’s an adult, she’s capable of deciding for herself what to share with the world on her own blog, surely?
Hey Marc, no one actually made you come here, or read this. You do realise you’re on someone’s own website, where the owner can do as they please. Your concern troll act is pretty obvious, stop telling her how to live her life, or insinuate vague threats. You dick.
I’ll allow that you’re well-meaning. But you come across as rather patronising.
Sarah knows exactly what she’s doing and saying, and doesn’t need advice. Unless she’s asking for it. And she’s not.
Marc, your reply sounds far from well-meaning. It comes off as condescending and controlling.
Marc, I disagree, as sharing these experiences for one helps others who go through these struggles, and two helps to diminish the stigma of mental and invisible illnesses. The more we DON’T talk about them, the more that they get pushed under the rug and stigmatized. If we talk about these things, it raises awareness, and that is ALWAYS a good thing to do.
Science and evidence based research are not tools of conditioning and brainwashing. I’m not really sure where you’re going with that statement as you don’t elaborate, but I’m going to disagree as I trust the scientific method above anecdotal evidence by woo pushers.
You come across well-meaning, but also entitled that you feel Sarah – an adult, on her own website – needs to hear that she should be careful of what she shares. Ignoring the fact that she is a PR professional who is well experienced at determining what information to give and the angle/decision she’s decided to present on this blog of her own personal self, all adults get to choose what to share. You can be “concerned” about it but it doesn’t give you the entitlement to tell them so.
Do you even read the stuff you write? You start off by telling Sarah what you think she should or should not say, and where she can say it, and yet you end your post by telling her to not let ANYONE pressure her into doing what they see fit.
You in essence, contradict yourself.
Next time you see fit to hand out your un-solicited advice to a stranger, don’t.
As a life-long sufferer of insomnia sometimes I’m not sure what is worse – the long nights awake, the longer days ins a semi-conscious fatigue fog, or concern trolls giving you either their suggestions on what to do about it. Chances are you’ve tried it and it didn’t work.
Marc, I’m not sure what your point is but it is her weblog, it is very thoughtful in its delivery (calling it ‘venting’ is a bit patronising) and many people seem to read and take both comfort and enjoyment from what she writes.
I am not sure if this is your game but “Other people might think” can be interpretted as a cowardly way of saying “I think”. Since you are interested in how things ‘may be seen’ you may want to keep that in mind.
Thank you, Sarah. Always learn a lot from you and I trust you to know what is right to share here. Onya.
Thank you for another post that I’ve learnt things from Sarah. By sharing your journey and what you are going through you are helping others. In simple ways that they know they aren’t alone and also in many, many other ways that you won’t even realise. You are someone to look up to and need to keep doing this and whatever else you need to that you get some benefit from doing.
Love party cat! (not so much living with one)
As an M.E. sufferer I can really relate to what you’re saying. Although I hadn’t done any research myself you’ve validated a lot of what I had suspected already. Thank you so much for revealing your own vulnerabilities so that others can learn and take comfort. Zombies unite indeed.
@Marc your comments intent does seem a bit confused and it does come across like you’re mansplaining to Sarah how she should live her life, as @Gem says.