Living With Energy-Related Disabilities or Why Can’t I Ever Finish Writing That Damn Book?

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
‑1: Main­ten­ance
‑0.5: Phys­ic­al activ­ity
‑0.5: Toi­let vis­its
‑0.5: Doctor’s vis­its
=9.5 hours

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.