Confessions of a Zealous Zebra:
A Day in the life
I was thinking about chronic pain this week and how it must appear to others looking in on the lives of those who suffer. Social media is amazing for so many things. It gives me a window to the outside world when my body fails me, it gives me a voice, it gives me a way to connect with others in my situation, and yet, it also provides a large obstacle when it comes to others being able to understand my existence. Social media is basically a highlights reel for the average user. We share the funny, the exciting, and the perfect filtered photos of our reality making it look as if we’re living in a dream. The actual reality behind the profile picture however is different, and nowhere is this more obvious than when we look at someone with chronic pain and invisible illness.
I don’t want to be depressing. Don’t want to constantly complain, so I always stick to keeping my posts funny, keeping them light and amusing. It occurred to me recently after my first confessions post got such a positive response that the spoonie community don’t need that. Don’t need filters or highlight reels. We need a dose of truth and reality so we can know that what we’re dealing with isn’t for us alone. That there are others who are crying behind closed doors and unable to leave the house. Online life, we must remember, is so often not even close to an accurate representation of what someone’s daily life is like. But maybe, maybe it should be.
Could we demystify the lives of others through the online community?
Could we discard the comparison and competitive mindset that is so prevalent, which always leaves us wanting more, and instead banish the isolation so many of us feel when scrolling and feeling we simply aren’t good enough?
Could we instead of pitting ourselves head to head with the unattainable, find empathy and common ground with those we never thought we would understand?
I don’t know if it’s possible, but if it is then I want it to start with me. And so, I decided to give you an uncensored look at the average day in the life of Kristy Nicolle. Online, people see my life as magical, where I never have to go to work, have an incredible boyfriend and a crazy cat called Moo. Where books seem to flow out of me in a torrent of unstoppable words. But what aren’t you seeing?
Well… I’ll tell you.
Yes, you did read that correctly. I get up at 12:00pm- noon. One of the many reasons for this is because my primary demographic of readers are five hours behind me, so I like to be awake when they are. However, that, I must admit, is a convenient excuse. The real reason I get up at 12 is because I’m chronically ill. Where a normal person functions on 6-8 hours sleep a night, I need 12-14 just to be able to get through the day.
When I wake up, my first port of call is always food. If I don’t eat within around 30 minutes of waking, I will begin to feel fatigued, dizzy, and often have a panic attack due to the fact my body will flood with insulin. Reactive Hypoglycaemia means I need to keep my body fed ideally around every 2-3 hours in small portions (though I rarely actually have the energy for this kind of food prep and regimen.) I will scarf down my breakfast, which is always high sugar and high carb to kickstart my system and prevent me needing to eat high sugar foods later in the day (this prevents weight gain- thus less stress on my joints and better overall health.) I don’t have to rush, in fact most people wouldn’t. I don’t have a job to get to, or anywhere to be, but I am on the clock. This is because after around 3 hours of being awake in the morning my body will crash out and I’ll have to nap.
After breakfast, I take my medication- Heart meds and Pregabalin- as well as hand selected vitamins to try and reduce my fatigue (B6, D, and C) all washed down with a pint of water. I have always been utterly crap at drinking, but I am trying to make an effort these days as it seems to keep me semi-alert where other things fail.
After breakfast and meds, I will take to the garden or my office and do my yoga regimen. It’s not very long, about 15 minutes, but it dispels the stiffness that I get in all my joints due to sleeping and being inactive for a long period of time.
After yoga I brush my teeth and floss for at least 5 minutes because I am at high risk of gum disease and tooth loss. By this time, I’m usually contemplating work and checking out my to-do list.
I use The Happiness Planner to keep myself organised as I can. I read somewhere that Barack Obama is in favour of reducing the number of decisions you have to make in a day, so I try to keep things as organised as possible to reduce using spoons (energy) where I don’t need to. Once this is done, I will read a self-development book or some blog articles about authoring until I inevitably crap out at around 2pm
Afternoon- 2pm onwards
Because I need so much sleep, my morning is startlingly short, and my afternoon begins with a 90-minute nap. I know myself well enough by now to know my body, and I know that skipping this nap, or not listening to my body when it tells me it is tired and needs a break, ultimately leads to a complete crash and burn. You have no idea how many times I’ve pushed through exhaustion (I mean I did write 11 books in 3 years for God’s sake) and ended up in shock.
Before I had this current mentality about sleeping, I would push against it completely and resist at all costs.
So, why don’t I do this now?
I often want to.
I find sleep to be incredibly boring and a waste of time, it isn’t productive, or fun, so why do I give in?
Well, more often than not, denying my body the rest it was screaming for would put me into shock, where I would pass out, throw up, get feverish, or end up stuck in the bathroom for 3 or more hours.
The remarkably stupid thing about me back then was that after all that, I STILL wouldn’t sleep. I would just brush myself off, chug a caffeine pill and some water, and get right back to bashing out the next chapter. As you can imagine, this might have worked maybe one day or two at most, but after taking a physical beating and resisting rest I would end up out of action and bedbound for up to two weeks afterwards.
Now I just say fuck it and take the damn nap.
Waking up from my nap I’ll be groggy as all hell and stiff again, so I usually go downstairs, shove some food in my face and try to get some coffee in me if there’s someone around to drive me to Starbucks.
(I still haven’t got my license because every time I think about starting lessons, I get a new symptom that must be gotten under control- Let’s be honest here- passing out at the wheel isn’t anyone’s fantasy.)
So anyway, I get up and go for coffee, then I come home and work for two to three hours.
A lot of people ask about my work hours because I spend so much time asleep. How is it possible I pump out so many words when I’m constantly in the land of nod?
Well, I’ll let you in on a secret I discovered a little while ago. It’s not about how many hours you work, but how effectively you work. Take now for example, I’m writing this blog post and I’ve been sat at the computer for 45 minutes. I’m just about to hit 1500 words. Now, many people might do the same amount of words in 3 hours if they’re constantly checking Facebook, personal messaging friends, or scrolling Pinterest in between paragraphs.
The thing is, with chronic pain and chronic illness, you have less time than everyone else, so you must make your time count for more. You need to be more focused, more efficient and less distracted.
I do not have the luxury of 8 workable hours a day, I have maybe four or five, so I must make them count.
It’s not just writing, being an author (oh how I wish this were true), though many people think it is. I also have to deal with emails, marketing, advertising statistics and organising campaigns, cover design, ad copy production, blog writing and management, formatting and distribution. So, what I do to be more efficient is I batch everything. I do all my social media posts on one day. I keep my blog posts to one a week but make them longer. If I sit down to write my usual 90-minute session comes out at between 2500-3000 words. This isn’t all something I just knew how to do either. I’ve been dealing with chronic pain now for almost 4 years, and every single day I’m getting better at handling it. While I’m working, I’m also ensuring my blood sugar is good and stable, my body is hydrated and fed, my fatigue is manageable, and my posture isn’t going to cause me pain problems later.
It’s a lot. A LOT. But the longer I deal the better prepared I am.
Evening- 7pm onwards
When I hit around 7pm I will throw a frozen prepared meal in the microwave and get some dinner. Mark will usually be home by now, so he might help me prepare something, but because he works shifts his hours are super long and unpredictable.
Once I’ve eaten, I do a kind of assessment. This is because by this point, I’m either flagging, or flying. If I’m flying, I don’t feel tired, but I also know that the next day will be a struggle as sleeping will not be easy later on that night because I’m wired. It’s a good thing to remember this when you think about your friend with chronic illness- No good day with this condition comes without consequences later on. If I’m flagging, I usually put away my laptop and get a shower.
Now, the showering thing is something it took me a while to figure out, because most people get showers in the morning and I was determined to keep this up after my diagnosis.
I was an idiot for attempting it but in classic Kristy style unrelentingly tenacious and stubborn about it.
I cannot do this.
It screws up my entire system and makes me so tired I’ll sleep my entire day away. This means I usually take one right before bed so if it makes me tired then I don’t have to fight it.
If I’m still fairly awake, I’ll lie in bed and sort out some admin or social media stuff on my phone, reply to emails, or check on my paid advertisements, unless I have developed one of those lovely light sensitivity headaches. (If I do have a headache like this which usually comes from staring at my laptop typing for too long I gotta sit in the dark with a pillow over my face- super funnnn…) I also use the time to journal a bit if my depression or anxiety is creeping up on me, or maybe write a poem on Evernote as I seem to get linguistic clarity late at night for some reason. Then I’ll take my medication, apply my bio-oil to my stretch marks, moisturise, cleanse my face, and then settle into bed early with whatever fiction I’m currently reading.
By this time, it’s around midnight- or if I’m super lucky maybe 2am. I have been awake for around 12 hours, though if you take my nap out of it then it’s actually around ten and a half.
So, that’s my day.
Not so glamorous is it?
Other things I should mention about what you don’t see on social media are that I live with my parents at the moment. Not only because I don’t work, so can’t afford to rent or get a mortgage, but because I need someone around most of the time, in case I have an accident and fall down the stairs or in the shower (Or on special occasions when I sneeze and douse myself in boiling water from the pan of pasta I’m trying to drain- ouchy!) Also, for the record this is me on a good day. Every couple of weeks or so I’ll head into a flare and have to take three or four days to sit in bed and watch tv or read because I’m not well enough to get up.
When this happens, my day is reduced to absolute necessities. I don’t manage to do my yoga, my blood sugars will be erratic because I’m sleeping so much, and my mental state becomes the consistency of quicksand deep enough to drown in. I’ll also struggle to shower alone, and often have to take a bath with Epsom salts to reduce inflammation and pain so I can sleep better.
On these days, I won’t leave the house, and on some occasions only manage to remain awake for around one or two hours out of 24. When I’m in a flare, I often get migraine like symptoms whereby any light or sound becomes painful, so I end up in a dark room cocooned in Sherpa like a little fuzzy slug.
I’m not telling you this because I want pity, or you to feel bad for me, it’s my life and, as difficult as it is, I have a lot to be thankful for.
I love my job, my family and partner are super supportive, and I have a comfy bed, fluffy pyjamas, and a fridge full of Kristy compatible food. I’m telling you this because it’s what you don’t see on social media about me that makes up the core of my existence and by that logic, who I am. It’s about exposing the fact that despite the fact people have told me I inspire them that really what that amounts to is carrying on within what can easily become the hellishly mundane.
I want you to know, you’re not alone. If you’re not perfect, if you sleep fourteen hours a day, if you are constantly checking for or worried about the next flare and where it’s coming from.
Social media gives you the highlights, but these are my lowlights, and they’re just as important.
I’m nothing special, I am in fact just one woman who picks herself up again and again in the face of every day obstacles, and keeps moving forward x
Thanks for reading,
Zealous Zebra x