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

Reflections on 2017

2017 has been a year full of ups and downs. Before I go on I will no doubt mention on numerous occasions:

• my wife (who’s blog can be found here)
• my parent’s (click here to see mom’s crafty YouTube channel), and
• my good friend Stuart (who’s fantastic art can be seen here)

Without further ado, lets get started…

January

My amazing friend Sabrina beat breast cancer then got married abroad, and I was lucky enough to be able to make it to her wedding reception for a couple of hours with the help of another friend. Definitely a highlight as I hadn’t seen her since I moved to Brighton six years previously.

I also managed to make it to a tutorial for my Open University course at the London School of Economics – I finally felt like a real student!

February

The first two weeks of February were a washout with a nasty virus that wouldn’t leave me and more fatigued body alone. It was a long, horrible few days. A trip to see a friend in Midhurst was cancelled and I was pretty upset and blue.

On recovery I managed to meet Stuart in Preston Park where it snowed and we went on our first mysterious ‘assignment’. An utterly fantastic and hilarious afternoon.

I finally got an appointment with a real medical professional who for once didn’t patronise me, tell me to join a gym or make me cry, I had some medication increased and was booked in a month later to see how I was doing.

March

My wife and I finally had a day out together and we went to Worthing. After hearing numerous horror stories I was pleasantly surprised at the beautiful beach, different wildlife and lovely town centre.  It was also the first day of two solid months of heartburn.

I wasn’t well enough to make a tutorial at Kings College London, again, but did manage to look round a few old bookshops with Stuart instead.

I went on a solo mini trip to Seaford, a local town, to sit on the beach and write. Again, I was surprised at what this small seaside town had to offer in way of views and scenery. It was also a beautifully warm spring day.

I had to give up my university studies with The Open University. I obtained a letter from my doctor supporting my decision. the university kept all my money and sent a letter saying I have to recover by November or I lose it.

April

Stuart took me to his studio before we went on an ‘Industrial Assignment’. I came home to find my wife and brother in law tucked up asleep on the sofa.

The second week of April saw Nat and I celebrate our fifth anniversary and we had a lovely little treat planned. With a cat sitter booked in, we headed off for a delightful french afternoon tea at Julian Plumart, shopping for a Pandora bracelet and then on to The Grand Hotel, a stunning luxurious Victorian hotel on the seafront where we had a suite, a queen size bed and more floorspace than we knew what to do with. Oh, and a bath – all hail the bath!

May

I joined a local gym and before working out decided to get some expert advice. I found a trainer who said his mum had fibro so thought we’d be a great match. On the day of one of my first session I was very ill after a lot of overtime at work. After emailing to cancel he replied saying lying in bed won’t cure me and I should get off of my backside. I didn’t go back.

‘Assignment Carouselfie’ with Stuart. No further words are required.

I met dad in London for a trip on a Route Master bus and took fun photos with my polaroid camera.

We bought Suzie Smart Car. A lifelong dream come true!

I attended Marie Clare Future Shapers in a flash London hotel. A great but utterly exhausting day, but I met another fellow Lancashire Lass living south and we spent the day hanging out together while she looked after me.

Woo, a busy month!

June

Nat and I visited the animal rescue centre Raystede. A beautiful day and nice relaxing drive through some quiet countryside.

I was meant to attending a blogging event – Blogtacular – but wasn’t well enough to go, as usual.

The guys from work chauffeured me and Nat in a rather posh car to One Aldwych for afternoon tea, my birthday present from Nat.

July

My parents came to stay. A lovely weekend. We took them to Julian Plumart for afternoon tea.

I stayed with my friend for a quiet, sleepy weekend in Midhurst and went to watch her perform in her local village choir. A beautiful evening.

August

I bought Nat horse riding lessons for us both for her birthday. Note to self, don’t learn to horse ride at 31 and definitely don’t do it with chronic pain. I actually couldn’t sit down for a week. However, riding a horse over the South Downs was an incredible, if not extremely painful, experience.

I had lunch at The Lanesborough in London following on from a work trip. A delightful, delicious experience.

Nat and I hopped in Suzie for a spontaneous trip to a small local farm. We acted like children, got lost in a maze and attacked by the most persistent wasp ever to have existed. A jolly good day in the sunshine.

September

I met my buddies from the ME/CFS NHS group I attended last year – the first time we’ve all been well enough to meet up together. It was so amazing to see them again.

I had a brain and head scan to see what on earth is so wrong with my painful locked jaw. I must have a huge brain as it took over an hour!

October

On a way to a local cafe to meet Stuart I fell upon a book fair. Needless to say we had the most wonderful afternoon with some excellent antique finds.

November

I didn’t recover, thus lost my university fees.

I headed for a restful weekend in favourite place on earth – St Annes on the Sea. With the help of staying in a luxury guest house a two minute walk from the seafront I had a relaxing, sleepy time and saw some of the most beautiful sunsets and chatted to some wonderfully friendly people. Lancashire is definitely my spiritual home.

Nat and I stayed in a hotel on Brighton seafront a few minutes in a taxi from our home. With a mahogany four poster bed and sea views it was a lovely treat, and dinner at Prezzo was indulgent and delicious.

I started working with Jody Shield – the healer, coach and mentor and got taken under the wing of her and her amazing team.

Nat and I went to a local Christmas Craft Fair at Brighton Open Market, a stones throw from our house.

December

Mom came to stay while Nat was at a Buffy The Vampire Slayer Convention. We had a lovely festive weekend including a buffet and Christmas song evening with Stuart.

I attended both the Advent and Carol services at my local church which is a beautiful example of architecture with stained glass windows and a stunning original organ.

Christmas (early) at my parent’s house was the most festive I’ve felt in years, with gifts, decorations and Christmas dinner it was quite perfect indeed.

Nat and I also went with Stuart to a traditional night of ghost stories as told by the Victorians in the run up to Christmas.

And so I finish writing this on the 21st December, with the real Christmas day still to go. I have of course omitted most of the parts where I have felt dreadfully unwell for most of the year, and I simply couldn’t include every wonderful lunch or tea/coffee shop visit with Nat, lunch and serious selfie dates with Stuart (or Dr Mystery as I prefer to call him) and the many wonderful times with my parents or I’d never get this post finished! I have also seldom mentioned my beloved Trinny, the fluffiest, prettiest nurse around. 2017 wouldn’t have been the same without her…

I also haven’t written about my job. I work with an amazing group of people who I am proud to call my friends and colleagues and I am being supported in my ever changing career no end. They take me to and from work to save on energy, run my errands if I am too unwell to go out and are just an awesome bunch who look after me, so a huge thank you to everyone at Consec 🙂

I am currently working on my hopes, dreams, goals, aspirations (whatever you want to call them) for 2018. But the product of that is definitely for another blog post…

So as I bid farewell to 2017 I want to take a moment to express gratitude to the friends who have checked on me when I’m ill, not got annoyed when I cancel plans for the fifth time and bought me loads of tea!

Here’s to a fabulous 2018!

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.

 

Overdoing It

Chronic illness is a funny old thing (not as in haha funny, as I’m sure you’ll understand if you’re reading this!). Sometimes you can do nothing and feel absolutely awful as if you’ve run a marathon then had the remainder of life sucked out of you by a Dementor, Harry Potter style. Other times you have the luxury of doing a little bit more than usual and feeling ok, no post extertional malaise days later, you just keep on plodding along. And then there is actually overdoing it and your mind and body punishing you for it as if to make sure you never leave the house again.

Last week I worked a couple of extra hours, had to get to the vet with my kitty cat (old lady check and essential vaccines) and like an idiot decided to book a ticket to the (very) local book discussion at a book store to see my favourite writer, horticulturist, and all round awesome woman.

Extra hours worked, no more than two I might add, lifts to and from work all week by my wonderful team of colleagues and friends I was doing ok-ish. Getting to the vets with my wife which is five minutes away wasn’t too troublesome. But as we were sitting in there waiting for the nurse to find the kitty blood pressure cuff (by the way the cutest thing in history – see here), that feeling came over me, as if someone had pulled the plug out and I needed to lie down immediately. I couldn’t string a sentence together, support my own body weight – thank goodness for the kind nurse who brought in chairs – or feel like I was going to be able to keep my eyes open. When that feeling hits I feel like I could collapse at any given minute, something which thankfully has only happened once and luckily I made it to my sofa in time. As soon as we made it home my wife helped me put my pjs on and I made it to bed, tramadol, a bottle of water and a very upset kitty cat for company. I slept solidly for three hours.

As the week went on I became more and more anxious. My generalised anxiety disorder (GAD) has no known trigger but tiredness makes it so much worse. I couldn’t face the book talk, could I. At the last minute I awoke from a nap just in time to slowly get ready and get the bus which thank god is only five stops and door to door. Disability pass in hand I bagged a front seat and the driver waited until my backside had hit the itchy nylon cushion. Alys Fowler is a true hero of mine, she inspired me to garden when I was housebound for almost three months with the onset of GAD, got me obsessed with growing my own fruit, vegetables and cut flowers, study floristry and she writes an awesome book. I got the lift to the third floor, folded up Little Johnny and made it just in time. For that short period of time I forgot about being ill in the intimate setting of the small discussion and enjoyed myself more than I have in a while. Everyone I told bar my parents said I need to get out more and am too young to watch a horticulturist impart her life wisdom in my spare time, but I’m so glad I braved it and made it. My hair may have been a disaster, make up smeared around my eyes post nap, but I didn’t care, and neither did Alys when I had the opportunity to chat with her.

Next comes the weekend. A time to have luxurious lie ins, wander about the local area (I live in Brighton’s iconic area of coloured terraced houses and steep streets), eat great food and meet friends. Er no! My so called lie in woke me at 3am Saturday morning so dizzy I had to hold onto the wall when popping to the loo, lie down in stages as my head was swirling as if I’d drank one too many bottles of wine, and of course, couldn’t get back to sleep. Dizziness to this extent is reserved for times when I have seriously overdone it. I assume this means going to the vets and sitting down to watch a 45 minute book discussion. Really living it large! The dizziness intensified and waned throughout the day depending on how close I was to my next nap and all hopes of cooking delicious healthy food went out the window for a takeaway. I felt as if I was floating all day, was nauseous and a strange pale shade of grey that matched the dark circles under my eyes. I fell asleep on the sofa, awoke as dawn broke and spent the next few hours waking up every half hour. Exhausted and still dizzy I gave in at 9am and made myself a cup of tea. Unable to get to sleep for a nap I decided to get out my notebook/laptop and write this blog.

Tomorrow the cycle begins again, my alarm will go off and my incredibly boring, sedate, yet exhausting routine starts all over again…

Beautiful Birmingham

Every June around my birthday I go back to Birmingham to spend a few days with my parents, see friends and to relax. This year I was extra lucky as not only as it warm and sunny, but I managed to spend some of my birthday (which was also father’s day) with my parents. We enjoyed tea in the sunshine while laughing at old memories before I left, first class train tickets in hand (and a bag of lovely pressies from my parents and friend)

I was definitely in need of a break when the visit home came around. Although my fatigue and pain tend to be less intense in the hot weather, I have a more general ongoing feeling of exhaustion. A couple of the afternoons we all read until we fell asleep and I had glorious two hour naps. My parent’s have a beautiful garden that blooms all year round and I couldn’t resist but take lots of snaps, especially around dusk with the gorgeous sunsets. We also visited a local park to feed the ducks bird seed and meal worms where a goose stuck it’s head up my dress and pecked my camera. Luckily I escaped unharmed!

Here are some of my favourite photos of the garden and park. I know in years to come I will look back at these photos with a smile and remember all the great moments of this long, lazy weekend.

Kikki.K Stationery Haul

Who doesn’t like stationery? We all do, right? Few love it as much as me. So much so that when I found out the kikki.K Birmingham Grand Central pop up store had closed I was beside myself. I’m told by my mom (a very crafty lady who was upset by the news too) that she spent some time composing the text to tell me and bringing herself to send it to over. Whilst I am starting to recover from the blow (something only tea, kitty cuddles and online stationery shopping can cure) I have discovered there is a store in Covent Garden, London, and am planning a trip to Swedish stationery heaven. In the meantime I am signed up to the mailing list and when an email with a 20% off code popped into my inbox I was on the laptop quicker than you could say ‘put the debit card away Karen’!

A few days later I came home to find this box of joy waiting for me.

I promptly tidied my desk/office space to ensure that my new purchases could take pride of place. Trinny the kitty also helped, if snoozing is a form of help of course.

So here’s a sneak peak of my order… (try not to be too jealous!).

As a tea lover I also love a good mug or cup and saucer. I couldn’t resist. This is a perfect size for my mom to use when she visits, I know she’ll love using it too. 

Stationery!!!

The cutest stickers you ever did see. Perfect for letters to friends, cards and SpooniePost.

The elastic on my Meowtingtons 2017 organiser snapped as soon as January hit so this is perfect for keeping all my papers, medical letters and address labels safe and sound. 

I simply couldn’t not buy these cute little stamps, whilst they are probably aimed at someone less than a third of my age, I’m very content knowing I have these at my desk. 

They were a little splodgy at first (is that a word) but I think that comes from the ink pooling in the packaging. 

These are a pack of 50 creative prompt cards. Perfect for a rainy day, bad health day, or just sitting and reading. Once again, I know my mom will love these.  They are so beautifully designed and made they are a joy to sift through. 

These equally gorgeous quote cards also come with a stand so you can change them up as your mood desires. They also make perfect little notecards or postcards for that lucky friend or family member. 

The artwork is stunning, very ‘me’. 

Every online (and store bought) order comes with a little notecard…

…and I love the thought that goes into them. 

There you have it, one very stunning, gorgeous, cute (and all those kind of words) order. I’m a very happy customer indeed. Next stop, Covent Garden. Go ahead and Google the store, you’ll be joining the queue with me.

Karen xx

Lazy Sundays in Brighton

Birmingham In Bloom

A recent trip back to my homeland brought with it all the joys of spring. After the chaos of urban, concrete Brighton and not a grass verge in sight, endless trees, blossom and spring flowers are a beautiful change. Many of these photos were taken in my parent’s beautiful back garden. Enjoy…

A adult great tit helps it young fledgling to feed.

A trip to the stunning Birmingham cathedral never fails to amaze, especially surrounded by the white blossom and last daffodils of the season. 

Even in the evening rush hour the cathedral grounds are awash with beauty.

Unboxing Boxcitement Subscription Box

My first ever Boxcitement box was definitely going to be full of surprises for me. Not knowing much about the boxes I had no idea what to expect. This month the theme was aliens and space and I really enjoyed opening the package up.

As soon as I collected my post I couldn’t wait to get inside to open up the box. I loved the tissue paper, sticker and stars, this is very ‘me’ indeed.

Everything was carefully packaged, even wrapped up in pretty little paper bags.

A blast from the past with flying saucer sweets…

This handy little bag will be useful for travelling or keeping my camera safe in my bag.

Cute little cards are always a favourite of mine and I can use these for Spoonie Post.

The box also includes a bunting but I think I might glue these into a scrap book or journal instead.

Hair grips are an essential for me, and I love the earrings but sadly react to anything that isn’t sterling silver.

And finally, who doesn’t need stationery to write lists?

I really enjoyed opening up this months box of treats and I look forward to seeing what mysteries future boxes have in store.

A Mystery In Lewes – A Photo Blog