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!

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…

Coast and Countryside

My wife recently spent some time with her parents north of London so my friend and I saw it as a perfect time to hop in Suzie Smart Car and have a gentle wander in the countryside. We ended up somewhere between Woodingdean and Rottingdean in the Brighton suburbs, a place called Happy Valley that holds the mystery of an unsolved murder from decades ago. Not so happy it seems. It was a mixture of bleak countryside, coastline and microclimates, a very eclectic place indeed.

We saw numerous butterflies I am yet to identify, heard the chirping of birds that I certainly didn’t recognise from my Midlands birdwatching days, got trapped in what felt like a field of thistles and discovered a narrow fallen woodland. All in all a good Sunday afternoon with great company

The gate that takes you from the chaos of Brighton into freedom.

Barbed wire surrounded us everywhere we went.

Perhaps the tiniest poppy in Sussex.

The only butterfly that kept still long enough to photograph it.

Roots clinging to the ground.

Upturned trees pulling the chalk out the ground with them.

This doesn’t do the sea view justice.

Climbing Elm Grove

I’ve lived in Brighton at the bottom of a mile long steep hill for six years. Until recently I had no idea of the views from the top as it is too far and steep to walk and buses are infrequent. Today we hopped in Suzie Smart Car and went to check out the views. On one side you can see nothing but greenery and the sea beyond, the other the lined streets of coloured houses in Brighton and the curve of the Sussex coastline. We were surround by the sound of grasshoppers, birds and the gentle breeze in blowing through the leaves. The roadside was lined with plants and flowers. These photos do not do the view justice, but I had to share them to tempt you to the top of Elm Grove.

Exploring The Familiar

Living in the chaotic, cramped and endlessly busy town of Brighton, I rarely get to enjoy the place I live. Tourists and annual swathes of students swamp the streets, seafront and city centre. Parks are packed with people either dancing with fire, smoking drugs, or both. Tourist attractions such as the Royal Pavilion (where I got married, the only bit of quiet time there!) have queues round the corner and are so noisy inside you really can’t get a feel for the place. I’m surprised the pier hasn’t sunk with the sheer number of people fighting for the best view to photograph hanging off the railings and the North Laine is a place where you are invisible and only worth being shoved aside. Oh, the beach. Well, don’t even attempt it on a sunny day. I could go on, but I won’t. Escaping the chaos for a day is a rare occurrence, usually only attempted when travelling with or meeting someone.  Recently I spent some time in London with dad and met my friend Stuart for coffee in Trafalgar Square. He mentioned how he often forgets how he loves being a tourist in London and I have to say I completely agree. Not only do the sights never fail to amaze me no matter how often or how many times I may see them, but I love the anonymity of it all too. Everyone lets passers by go about their day, no invisibility or shoving required, and who knows, you may end up chatting with a tourist or two (my sneezing fit and a family sightseeing from the Caribbean made for quite an amusing conversation). The coffee shops were full, but we still got seats and thoroughly enjoyed many a much needed brew.

I’ve called this post Exploring The Familiar as this is the only part of London I seem to visit with my camera in hand. I love the splendor of Buckingham Palace, the elegance and beauty of the police and military horses, the green and colourful gardens alive with buzzing insects, squirrels, ducks and birds. It’s also very easily accessible and close to Brighton. So despite a very high pollen count and many a sneezing fit that day, dad and I had a perfect day wondering through London, travelling on the Tube and even riding on Route Master Buses.

Here are some of my favourite photos of the day…

Lazy Sundays in Brighton

A Grand Anniversary

This week my wife and I celebrated our fifth wedding (civil partnership) anniversary in style. Our itinerary looked a little something like this:

• Afternoon tea at Julian Plumart Cafe .
• A trip to Pandora to buy a leather bracelet and charms.
• An upgrade to a superior room/suite at Grand Hotel Brighton.
• Dinner at Aberdeen Steakhouse.
• Admiring the full moon at midnight on the seafront.
• Rushing home at lunchtime the following day for cuddles with the fluffy one (we had a cat sitter).

Credit to Nat Rubins-Lawrie for quite a few of the photos, thanks old bird!

Clinique Beauty Hall

Yesterday I visited Boots Brighton North Road and was treated to a spot of pampering by Lauren, one of the team. She showed me a selection of lip products and beautifully did my lipstick for me. Luckily for me, it’s currently Clinique Bonus Time in Boots at the moment so I ended up with a few extra travelsize treats which will be perfect for an upcoming night away for my fifth wedding anniversary…

Spring At Home

Spring is such a beautiful time of year, it’s a close second the array of bronzed colours Autumn brings.

If you’re a regular reader of my blog you’ll know that I don’t often get out an awful lot, and I certainly don’t have a garden to admire from the dark basement flat that is my home.

The winter had left me feeling rather down in the dumps and generally fed up of the four dark damp walls of my expensive Brighton rental home. With no grass verges outside, few trees and not a sparrow or starling to be heard twenty minutes inland from the sea, I was desperately craving some greenery and colour at home. But with the lack of sunlight I have always been convinced that no plant could survive here, just as I appeared to be struggling to.

Then I read a magazine article about how good it is for your mental health to fill your home with plants. I am lucky in that I have huge Victorian windowsills on the two windows in my flat so I decided to hot foot it (get the bus) up one of the steepest hills in Brighton to my (very) local garden centre.

I’m positive that once inside my wife despaired of me, I was thoroughly excited by the greenery an houseplant options that surrounded me and she promptly abandoned me for the book section! Cautious of the poor light I finally came home with a couple of plants, a cacti pot and some pretty pots for them.

A few weeks on, they are alive and well so after a doctor appointment we went to the local florist at our market who always have a lovely selection of plants. Having read aloe vera plants are good for aiding sleep and need little light, this insomniac got her hands on the biggest one there for the bedroom windowsill along with a beautiful red edged grass of which I’ve not a clue what it is.

Finally, I needed some floral colour, so a trip to Marks and Spencers gave me the opportunity to be treated by my wife to a couple of lovely bunches of flowers and daffodils that cost just 25p because one flower had started to open, bargain!

Having been a keen gardener back in my home town of Birmingham, and even volunteering for a Jacobean walled garden, this green fingered girl (ok, woman)  is loving chatting to and watering her plants, I forgot how much I missed it. I’ll certainly be getting a bunch of flowers every week too.

Here is a small snapshot of some of the colour that is currently filling my home. I hope you like it as much as I do!