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Side Hustles & Chronic Illness

As I written about before, I work part time, four days a week with one full day on a Monday. Every work day is followed by a rest the moment I get home, these have got longer and longer over recent months and now can be up to four hours – quite significant for a six hour work day. This mean I have less time in the evening than I would if I was a healthy full time worker, and the time I do have is not exactly filled with me bouncing off the walls with energy. Think more sloth after a long day hanging around on my branch. 

So the short evenings, three days a week off regularly spent almost entirely in bed or simply doing nothing but listening to audiobooks and lying in a heap mean there is little to no time, or energy, for my hobbies, ambitions, hopes, dreams and projects. 

I work in an industry notorious for its exceptionally long hours, being on call during time off and stepping in at the very last minute to cover shifts. While this isn’t something that really applies to my role I can’t help but feel guilty when I’m fading after four hours,  staggering out the door after six knowing I’ll soon be crawling into bed with my cat while my colleagues still have another six hours to go. I have to keep reminding myself, I didn’t choose this, I’d rather be working full time along side them, earning a living and leaving with the energy to do the things I want.

Over the years I’ve had many hobbies that I’ve had to give up and I often even struggle to read. But lying in my cosy heap of blankets has also given me much time to think about what I’d like to do alongside my day job, to think about what would really light me up and have me excited to work on in my own time.  

Projects have come and gone, often just ideas that never make it on to paper, or screen, because I just didn’t have the energy or cognitive power to get anything done. Other projects linger on for months, while I debate whether or not to give them up. I wake up on a Monday with plans to make lists of what I need to do to keep on track but the lists never prevail, and Mondays pass by like they were worried time was going to run out. I feel guilty that I haven’t done anything, a failure even. And the less I do the less I can bring myself to do, I just can’t face it anymore. So my passion projects linger in the background, until they dwindle so far into the distance I can no longer reach them. 

In today’s society, busy is often seen to equal success. But what if you aren’t able to be ‘busy’, what if your idea of busy is planning an entire rest day on the sofa because you want to celebrate a birthday or go to a friends wedding? Is this form of busy any less justifiable than spending three hours on a Saturday afternoon writing website copy and blogs? Absolutely not. My lists on a Monday should consist of scheduling in rest, and if I spend ten minutes writing ideas for my project that week then it’s a huge success, because add up those ten minutes over the weeks and you’ve got yourself a few hours work, a massive achievement in my book. 

I’ve recently scheduled in rest times on the calendar app on my phone. A little reminder pops up on my screen when I get in from work and at weekends to remind me to head to bed for a couple of hours because that is what is most important. If a three hour sleep gives me two quality hours in the evening then that is success. And if anyone asks, I am BUSY, busy resting.

So if you are wondering what the hell happened to the projects I probably chewed your ear off about last time I saw you, it’s coming, but first I’ll be taking my much needed rest. 

Featured Image photo credit: Stuart Hermolle

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Who Am I – 2017 Edition

Who am I? Who are you? How does anyone know what their identity is? Is it your job, marital status or age as so often detailed in a magazine columns – ‘Lady K, 31, Civil Partner, Brighton’. I prefer to think of it as what you enjoy – hobbies, interests, pastimes. So for me I think I can be identified as an eccentric, cat loving, bird watching, nature loving trainspotter who loves reading, spending time alone and is a classic introvert. Or can I?

Life with chronic pain and fatigue and all the other symptoms that come as part of the joyous package mean life is far from what I would like and what it used to be. My days now revolve around feeling wiped out, worrying about feeling wiped out, resting to recover from feeling exhausted and resting to store up enough energy to get through the coming days at work. So where does that leave time for my hobbies, of which I know there are many.

‘Health Professionals’ and various people I have come across tell me not to waste energy. I can rarely muster up enough energy to cook a decent meal, and when I do end up with some sort of injury – a burn or cut – so if I can’t even feed myself properly, then why should I use any lucky spare energy on doing what I enjoy, for example reading a book. I’ll tell you why – because I’m allowed to enjoy things too. It what makes me who I am, keeps me sane, and allows me to cling on to the little bits of me that I feel are left. Its a reminder that the real Lady K is still in there somewhere, fighting and waiting eagerly to escape the slow, tired body and mind I’m currently trapped in. So while I may feel absolutely awful after such activity, the chances are I’ll feel absolutely awful anyway, so I might as well enjoy a little me time while I can.

In 2017 I’ve attempted to make myself a priority. I’ve spent my life putting other people and things first, and it’s really hard to stop that. However, I think for a first try I’ve done well. I’ve read seventeen books this year. Admittedly some of these are graphic novels or books that require very little brain power, but others were deep storylines, that although short, were a challenge to read. And I loved every second of it. Some of my earliest memories are of reading. My parents reading bedtime stories, winning awards in reception class aged four for having read the most books and having a reading age double my actual age. Reading is a part of ME (not M.E.) and I’ve made space for it in my life. I’ve read in bed, reclined on the sofa, in between napping on long train journeys home (I recommend advance first class tickets, affordable and comes with a reclining seat and endless tea on Virgin West Coast). Reading is rather easy to incorporate into chronic life, and I thoroughly intend to keep it up in 2018 and beyond.

2017 has also seen me making more time to spend with friends and family. My anxiety, pain and fatigue often leaves me trapped in the prison of my home but this year I have tried to fight it just a little. It’s gone well. I’ve seen plenty of my good friend Dr M, managed to have catch ups with friends who also have M.E. and pain conditions, met with Mrs B for tea and cake, spent more time with my parents despite the distance between us. Yes, a very good year for socialising indeed. Go Lady K!

I’ve also ensured I’ve had good, quality time on my own. Yes, alot of that is in my pyjamas talking to my cat while I drink tea and eat crisps, but throw in a book or a good TV series and it makes it that bit more pleasant. You forget how flippin’ awful you feel for just a moment and get lost in whatever it is you are focusing on.

So while all of the above may not seem very rock ‘n’ roll told the old me, it’s progress for the present me and it’s making life more enjoyable. No, I won’t be running along the seafront at twilight any time soon watching the starling murmuration around Brighton Pier (hopefully one day though!) but I can curl up under a blanket, have a cup of tea with a friend, nap and read a chapter of my latest book.

So the next time someone asks you to identify yourself, remember, you are more than your job or marital status, your are more than any illness that may affect you, you are YOU.

My name is Lady K, and I’m an eccentric, cat loving, bird watching, nature loving trainspotter who loves reading, and spending time alone.

Who are you?