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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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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:

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.

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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.

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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.

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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.

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

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

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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.

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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.

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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.

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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.

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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.

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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…

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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!

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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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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.

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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…

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Daily Routine With Fibromyalgia and ME/CFS

My daily routine is far from what it used to be before I became unwell. I can’t do most of my hobbies now (gardening/baking/long walks/running) because they are just too painful and exhausting. I work part time, have had to give up my studies with The Open University, rarely cook a decent meal, and spend most of my time at home resting with a cup of tea, a pile of unread magazines and books (in the hope I will be able to muster up some mental energy to read them) and cups of Pukka Ginger Tea being frustrated about the pile of washing up in the kitchen and the clutter that surrounds me. So I thought I’d write out my routine for work days and days off just to put into perspective what life is really like, even though I’m only thirty (almost thirty one ahhhhh!) and look relatively well.
Work Days – Mon/Tue/Thur/Fri
7:15am: The alarm goes off, I snooze endlessly as I usually haven’t been asleep long.

7:40am: Finally drag myself out of bed, stretch, creak and crunch and stagger over to wherever my cat is sleeping for a morning cuddle. I let her out, change her water, poopie scoop her litter tray and top up her biscuits. She comes first as she is totally reliant on people to care for her. Tea, breakfast and medication, you get the idea…

8:30am: Leave the house to either get my bus right by my house which drops me outside work (its quicker to walk but that’s out the question) or get picked up by colleagues. I have a special pass for the bus that allows me to sit in the priority seats. The bus journey usually involves some funny looks from people who see my pass.

9am-3pm (5pm on Mondays): Work. By early afternoon I’m clock watching as I am struggling so much. Exhaustion set in a while ago and the pain creeps in behind it (and this is on a good day). A lot of the time I get a lift home from colleagues. Absolute life savers!

3:30pm I’m in bed having drunk a glass of water, taken tramadol and the kitty is usually sitting on me purring. Pyjama time has begun.

7pm: Out of bed (later on Mondays) and make the sort walk to the sofa. Still exhausted I’m in great need of a cup of tea. I’ll probably burn myself on the steam or spill some hot water.

8pm: Dinner time. Far later than I would like, and I definitely don’t have the energy to cook. Probably a ready meal, something out of the freezer chucked onto a tray or a tin of soup. Yep, I’ll burn myself again at some point during this short process of heating up crap food.

9:30-10pm; Shower. I leave it as late as possible as it is surprisingly hard work. Getting dry and dressed is exhausting. Take a handful of medication and more painkillers if I know I will be in (increased) pain all night.

11:30pm: Back to bed. I read, sometimes listen to meditation and hope for a good nights sleep.

1am: Still awake…. I can’t get comfortable from pain, my mind is racing but I’m too exhausted to get up. Sometimes I end up dragging myself to the sofa for a cuddle with my wife if she’s not working or getting up for an early shift.

2am: Probably still awake.

3am: Hopefully asleep. But often not.

Days Off:

No routine. I let my body do what it wants. It’ll sleep, snooze and rest, tell me it needs pain relief, when it’s peckish and make sure I leave the laundry, washing up and cleaning for another time (we really need to get our amazing cleaner back but at fortnightly visits it was still so expensive). These days involve endless cups of tea, a chance to flick through the pile of magazines, watch YouTube and stay in my pyjamas all day. I probably won’t go out and if I do, it’s been planned down to the very last details, and I’m probably terrified of the exhaustion that will come with it. These days are all about saving enough energy to work and earn a living. Sadly life is ruled by the need to pay bills and not look after my body and mind.

Picture credit: Meowingtons 

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Life with Insomnia

Insomnia is something I have lived with for many years. It really started to hit when my fibromyalgia symptoms began after my accident five and a half years ago but I’ve never been a great sleeper.

As a child I always thought it was normal to go to bed and lie awake for an hour or so before dropping off. I’d frequently have nights where I’d lie awake until gone midnight, which felt so late when I was under ten as you need so much more sleep as a young child. Those days at primary school that followed felt endless, the light from the projector in class (yes I’m that old) burnt my eyes, other children would ask why my eyes were so black and the days felt endless. Days like this usually continued for a few days until my sleep somehow reset itself.

When I became unwell with fibromyalgia my sleep became very erratic. Not only would it still take an hour or so to get to sleep but I’d wake up every hour or two and struggle to get back to sleep. I’d wake up with a jump, or at the sound of the cat meowing in a different room. I’d always been a light sleeper but now the sound of my partner breathing beside me was enough to wake me up.

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I started taking medication that helped me sleep a bit better. Amitryptaline didn’t help me get to sleep as it was supposed to but it did stop me from waking up with a jump a much. This medication was changed to pregabalin a couple of years later to help treat pain but I found it had the most impact on my sleep. Again, it didn’t help me drop off but it made a big impact on the quality of sleep. Once I was asleep, the pregabalin seemed to ensure that I stayed asleep until the morning. At this point I was managing about six hours sleep a night. Not enough, but manageable.

As my health continued to deteriorated and a diagnosis of Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) was made I started to be unable to function after work without a nap. As time has gone on my work days have got shorted and the naps have got longer varying between one and a half hours and four hours as the week goes on. I have found that on days I force myself to stay awake all day and end up feeling exhausted beyond words I have an even worse night. Recently I was awake until 5am after an especially long day. I had been awake for twenty one hours. My new frame of mind is to just take sleep where I can get it as the less I nap, the less I seem to be able to sleep at night.

Over the past few months insomnia has shifted to a new level. I am frequently awake until past 3am when my alarm goes off around 7:15am. The sleep I do get is broken, light and filled with vivid dreams and troubling nightmares. On the three days a week I don’t work I try and let me body do it’s own thing and make sure I don’t plan anything for the morning of those days. This often means sleeping from around 3/4am and waking up at 10/11am. I have read this is common in ME/CFS patients as the body doesn’t produce the sleep hormone, melatonin, at the correct times.

I have been struggling to function on such little sleep despite the fact I thought I was used to getting by on just a few hours. This has lead me to try different things out to try and help. Nytol worked the first couple of times, after half an hour spent hallucinating in bed I had a decent night of sleep. But this soon wore off and now makes not an ounce of difference. Pukka Night Time tablets help me feel sleepy, too sleepy to read, and they help settle me but they don’t actually get me off to sleep. I’ve tried various night time teas with chamomile (which I hate the taste of – I’m desperate), valerian, lavender and a whole host of other things. These just make me get up more frequently to use the loo. I’ve tried night time pillow sprays to no avail. Meditations such as my favourite yoga nidra used to help, but again not any more. I’m at a loss as to what to do and think that speaking with my GP is the last resort. But I’m reluctant to start taking yet more medication, with more side effects, and adding to the list of prescriptions my body has become dependant on.

So for now, I let my body nap for as long as it wants as I know this may be the only sleep I’ll be getting for a while. I find it amazing how the body can survive and continue with such little rest. With my trusty kitty by my side, I’m off to get tucked up in bed and hopefully snooze the afternoon away…

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Photos 1 and 2 – Psychologies Magazine

 

 

 

 

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The Ups and Downs of Being ‘A Part-Timer’

People say how lucky I am to only work 26 hours per week. And I guess I am in a way, who really wants to spend 40 hours plus a week at work? Well, I’d quite like to go back to a full-time nine to five actually.

I work so few hours because I really can’t work any more right now. I do this over a four day period with a mid week break which works quite well for me, but I’m still utterly exhausted and riddled with pain after every day, especially my one eight hour day at the beginning of the week.

Working part time doesn’t allow me to spend my time off gallivanting, skipping through meadows, or reliving my raving days. I don’t come home and cook up a daily feast at 3pm every day, or take myself off shopping for something I ‘need’ such as another large pile of books (although I quite fancy doing all of those). It allows me to rest, rest, rest and take additional painkillers so I have more time to deal with the side effects, then have another rest. On Fridays I come home and sleep for the entire evening, because I just can’t function in any other way.

At weekends I’m not bursting with energy after all that rest, I’m ready for more rest. Which is really bloody boring at times might I add. I’m a bookworm, someone who loves to continually learn, I love going for walks or discovering new places (especially now I live on the coast), I’m a gardener and a baker. But I don’t do much, if any, of that, because brain fog makes it difficult to read much more than short magazine articles, and I can’t walk far because I’ll be so exhausted by the end of the road and my body hurts too much to be able to support myself with a stick or crutches. I can’t bake because I don’t have the energy to do the big clean up afterwards (I’m quite messy – think Selasi in the GBBO) and my gardening consists of keeping my lemon verbena plant alive through the winter.

Amongst all of this I’m half way through getting an Open University Degree. I’ve had to defer twice, and it’s taking me far longer than ever expected, but somehow I’m doing it. I’ll be honest, I can’t really remember a thing I’ve learnt along the way when put on the spot, but I’m getting good at answering University Challenge questions with my parents so it’s in there somewhere. I’m dreading the exam next spring, but what will be will be. If it doesn’t work out I’ll just try another module without an exam.

Then there is the financial freedom that working full time could bring. My wife currently earns considerably more than me and the is some  pressure on her to keep it that way, much to my dismay. But I’m lucky to be in a job I love and earn enough to pay my half of the bills and buy all the boring household groceries (she gets the fun tasty food and treats) and still be able to afford to treat myself to a few subscription boxes a month.

So, while working part time isn’t all doom and gloom as it means I actually get to see my wife on her incredibly unsocial shift pattern, and I get extra cuddles with kitty, it’s not all it’s cracked up to be when you work less due to health reasons.

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Pyjama days and kitty cuddles

Karen xx