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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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A Fatigue Flare

A fatigue flare is debilitating.
Its life changing.
It comes at a time when you are already struggling with chronic life.
It’ll replace the insomnia.
Four hours of sleep a night will be replaced by twelve.
And even then you could sleep more.
Naps last four hours.
You are horizontal on the sofa when you’re awake.
You’ll lose your appetite.
You’ll feel persistently sick.
You’ll have to drink with a straw.
Noises are too loud, smells too strong, lights too bright.
Showers are impossible, and don’t even think about washing your hair.
Cleaning your teeth becomes a dreaded chore.
And work, oh work, how your body will cope you will never know.
But you’ll make it, just.
It’s about asking for lifts home from work.
Then getting into bed without removing your make-up.
It’s about asking for help with dressing and putting on pyjamas.
It’s about your favourite company becoming your cat.
Because you can’t hold a conversation.
Or string a sentence together.
You can’t find the right words.
Questions are unbearable.
Thinking hurts.
You’ll watch re-runs of your favourite shows.
Because you can’t handle new themes or stories.
YouTube becomes too busy.
Twitter and Instagram overwhelming.
Just at a time when you need your online chronic illness community most.
You’ll become to unwell to communicate with them.
Everything hurts from your fingers to your toes.
It’ll hurt to sit, and hurt to lie down.
You’ll take more medications, you’ll feel even more sick.
You’ll be too exhausted to feel sorry for yourself.
But never too exhausted to feel afraid.
You’ll have no choice but to wait it out.
Eventually it’ll pass.
You’ll go back to your normal exhaustion, the normal fatigue.
Insomnia will return.
Naps will be two hours.
And you’ll be able to hold a conversation again.
Until the next time it returns, like a rug being gently pulled from beneath you.
You’ll fall back into bed, and begin the process all over again.

 

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‘Normal’ Poorly With Fibro/ME

I might be used to it by now, but every day is probably like living with a cold/flu without the cough or snotty nose. Aches, pains, fevers and fatigue is just a part of every day life, and just because I’m used to it doesn’t mean it’s any easier after a few years.

Every year the dreaded cold and flu season creeps upon me where I shrink away from every person on the bus who sniffs and hold my breath in the lift when someone coughs. It’s the time of years I rattle with supplements and alcohol hand gel becomes my best friend. Despite having a compromised immune system, I think I’m relatively good at avoiding the lurgy. But when it hits, it comes down like a ton of bricks, casting  veil of fatigue like nothing before over me, increasing pain five fold, the germs and ‘usual cold’ symptoms linger on and on and on. Well, if I’m going to be ill I may as well do it properly!

The virus I currently have couldn’t have picked a worse time. I’m about to have six days off work as holiday, my longest break in well over a year, which I’d set aside for studying and a day trip to see a friend. First came the swollen glands, then the sore throat and painful chest all washed down with complete exhaustion. Then I felt better for a day. Then it came back, and along with a blocked, runny nose came dizziness, light-headedness and a feeling of surrealism, altered vision and of course, the lucky bonus of increase fibro and ME symptoms. This resulted in me almost collapsing at work and having to be helped to the work car to be brought home. Not before I’d burst into tears in the toilets first because I was so scared. The funny turns lasted into the next day. I had to be dressed/undressed by my partner and dried off after a shower. Not your average cold you’d think. But it probably is, most people would feel awful for a few days, need a couple of days resting up with soup and hot drinks then be back with a spring in their step.

Living with symptoms and fibromyalgia and ME on a daily basis is tough and tests the willpower of even the most positive of people, but when germs and bugs find their way into that mix, it ends up in a long, drawn out period of awful symptoms and fear that it will never end.

I think  writing this blog has just been an excuse for me to get things off my chest after what has been one hell of a week, and it’s definitely not over yet!

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A Blustery Afternoon on Brighton Pier

A rare afternoon out lead to a wet and windy trip to Brighton Pier.

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After filling my face in Harvester (who can resist the endless salad and filled potato skins?!) we headed to the pier for some sea air and arcade fun.

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Seagulls fighting the gusts

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Living a twenty minute walk away from the sea front would lead you to think I’d be there all the time, and if I had my own way I would be. But chronic illness doesn’t allow for that so I make the most of it when I can.

Blustery weather is one of my favourite times to visit the pier. I love the sound of the pebbles rolling in the waves, the sight of waves crashing against the sea and rocks, and dodging the crashing water splashing everything it comes within fifty feet of.

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The West Pier left in ruins in the distance
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The sound of the pebbles crashing in the waves makes me feel so content with life.
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Brighton Marina is almost invisible in the mist of the sea and rain

After an hour on the pier and emptying a two penny machine of Love Hearts for the grand total of £2, I was ready for the dark bus journey home.

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The tourists stay out longer than me

Of course, this afternoon out means it’s compulsory rest with my kitty the following day, but the pain and exhaustion was totally worth it. I had the best afternoon in what feels like forever. I can’t wait for next time!

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Listening to happy music with Trinny

Karen xx