NOTE: The purpose of this text is to describe a sort of invisible disability that many people might not even be aware of. I am not trying to score sympathy points, or to give “normal” people a guilty conscience for being healthy.
I have entertained myself with a bit of math lately. It started one day when I was putting medicinal lotion on my skin, something I do twice a day. I thought about how much of my time I use to handle, maintain, counteract and manage my various illnesses. And how much time I actually have at my disposal every day, considering that I have disabilities that affect my energy levels. Then, I started counting my time, and the results of my calculations are what you are about to read. But to put it into context, I also want someone to compare to. It is easy for me to talk about having a “normal” life compared to mine, but what does that even mean? Everyone has their own things that eat up time. For the sake of clarification, I have therefore invented Normal Norma. She is, like me, a childless woman in her thirties, living in a house with her partner and various cats. Our life situations are, in other words, very similar, except for the fact that Normal Norma has no chronic health issues, and I do.
Let us start with a list of my illnesses. Which specific ailments I have is not really relevant, but it can help to give an overview over how many different things can affect a person’s time and energy.
- Fibromyalgia – Chronical pain syndrome that affects pain levels, energy levels, quality of sleep, digestive functions, cognitive functions, stress resistance, inflammations in the body and more
- Old back injury – Causes chronical pain in head, jaws, neck, and back, requires regular chiropractor treatment
- Anxiety, panic attacks and stress problems – Requires medicines in pill form
- Psoriasis – Skin disorder that requires medicines in lotion form
- High sensitivity – Affects energy levels and cognitive functions
- Sleeping problems – Affects energy levels, sometimes requires sleeping pills
- IBS – Problems with the digestive functions
- Bladder problems – Not properly diagnosed yet
- Physical collapses – Not properly diagnosed yet
Okay, that was that. As you can see, there are some things in need of maintenance in this splendid genetic specimen. And now, we can start with my little math example. As a starting point, let us say that Normal Norma needs 8 hours of sleep per day, which leaves 16 hours of time awake. Of course, I do not mean that Norma is running full tilt for 16 hours straight; only that she has that time to her disposal to do all the things one normally does during a day. Including staring at one’s phone or reading a book.
Now, let us take a look at Low-Energy Laidi. Having fibromyalgia means, amongst other things, having less daily energy than someone similar to you without it. Because of my fibromyalgia, I have a maximum of 75% of the energy of Normal Norma. I also have days when I only have 25% of Norma’s energy, but since I am a positive person at heart, I want to look at a good day. That means that when Norma wakes up in the morning with her 16 hours in front of her, I wake up with 12 hours at my disposal. That is the time I have to do all the normal, everyday things that most of us do: eat, work, socialise, buy groceries, clean the house, whatever.
A small diversion: What do I do then, during those four hours when my energy is all used up? Well… Firstly, I sleep between nine and ten hours per night. Several of my illnesses and medicines lowers the length and quality of my deep sleep, so I need more sleep to get the same amount of deep sleep. And otherwise… I often lay conked out on the sofa, or on the bed, or on the floor, because I am out of energy for the day and I have tried to run just a little bit further.
So the starting point for the calculation is 16 hours for Normal Norma, versus 12 hours for Low-Energy Laidi. Now the subtractions start.
As I said, I started thinking about this when I was using my skin lotions, and I calculated that I spend an average of one hour a day on maintenance. Things like putting on lotions, dividing medicines in pill boxes, taking medicines, stretching the body parts that are currently inflamed, and so on.
I also need to do physical activity for an hour a day to keep the pains under control. And yes, everyone should exercise every day, but this is what I need to not get more and more pain. I count on half an hour a day here, because I do not always succeed in exercising.
Then, I subtract half an hour for the extra toilet visits, since I go to the toiled twice as often as Normal Norma. Yes, I have counted.
Next, we have the doctor’s appointments: I try to keep to a max of two a week. With the travel times, that is around four hours a week, so just over half an hour a day.
Starting point: 12 hours
‑0.5: Physical activity
‑0.5: Toilet visits
‑0.5: Doctor’s visits
The end result is that I have 9.5 hours per day at my disposal, compared to Normal Norma’s 16 hours. 2.5 hours of my time is spent on maintenance, and the remaining 12 hours of the day I sleep or rest.
Now, The Swedish Social Insurance Agency deems me healthy enough to work fulltime. Which I guess I am, in theory – if I do nothing but eat, work, go to the toilet, and sleep. Luckily, I work from home, so I do not have to use my time for going to and from work. This is both a choice and a necessity. Because of my high sensitivity, I get tired by all forms of sensory input, so being on public transport or in an office makes me exhausted. And because of my fibromyalgia, I cannot have a job with fixed times, since I never know how much energy and/or pain I will have on any given day. For me, the solution is to work from home, with my own company. This works very well for me, even though I can get extreme cabin fever from spending 90% of my time at home.
But still – I am supposed to manage to do all the things Normal Norma has 16 hours to do, in 9.5 hours. Which is impossible, of course. I always have to compromise with my time, my will, and my energy. And this is where we get to the part of the text that is about creative writing, because what I am most sad about not having time and energy for, is my writing.
I have wanted to write books for more than ten years. To get published, and to work as an author, is my biggest career goal in life. I have worked as a translator for almost eight years now, and I really love it, but I chose that profession specifically to get to work with language and writing, and because I wanted to be able to combine it with my own writing. In my previous text about writing, The Unexpected Aging Epiphany, I wrote about how I now, after a ten year long pause, finally can start looking at my own texts again. I feel mentally capable to write again, and I really, really want to!
… So why not just do it, Laidi?
It is that “just” which is the issue. Because I never get to do all the things I need and want to do in my 9.5 hours per day. Work, being sociable, spend time on my hobbies… And now, I have also started this blog, which I had to think long and hard about if I should do at all, because it would use up more of my energy. In the end, I decided that writing a blog post every week can help me get back into the habit of writing overall. Plus, I have so many things I want to say!
I hope you are starting to see my dilemma. What can I make further compromises with? What more can I limit or remove, when I have already removed most of it? What do I give up in order to be creative, to get to finally finish writing my half-finished novel?
My modest dream is to be able to take half an hour of every work day to work on my novel. It does not sound like much, right? Only two and a half hours a week. But I cannot get there. Despite it being something that I want so much, despite that I have set up a goal for myself to have the novel ready to send to publishers before 2018 is over. I have the whole story in my head, I know which parts I need to change, which chapters I need to add. I “just” cannot get there. It is incredibly frustrating.
In my case, it would hardly help having more hours in the day. Except that I could sleep more. But when the day’s energy is used up, I do not have a choice, I just have to stop whatever I am doing. I cannot become that mythical author that works full-time and handles everything, and then writes the night through. I am not the kind of writer who can squeeze out ten pages a day, regardless of the circumstances. I cannot take a more intense period of a couple of months to get more writing done, and then rest after. I have to see to what amount of energy I have at my disposal, from day to day and from hour to hour. My life puzzle will always consist of too many pieces that do not all fit together. That is how it is, and I am getting better and better at accepting it. But getting the writing piece to fit is a challenge I have not succeeded with yet.
Damn it, I will get the writing piece in place this year! I hereby solemnly promise myself this.
The inspiration to do an overview over my own time mainly comes from this video about The Spoon Theory, coined by Christine Miserandino, here described by the amazing Jessica Kellgren-Fozard. I discovered Jessica in the beginning of this year, and now she is one of my biggest heroes and role models. I have seldom seen a more positive person. If you want to know more about invisible disabilities, I highly recommend watching more of her many videos about it. She is my spirit animal.