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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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Rediscovering My Spiritual Self

I started off 2018 on a real high, determined to make it the best year yet, make it ‘the year’ as I kept telling everyone until they were sick of talking to me. Things have certainly come my way to test that theory but I keep on bouncing back, and for that I am endlessly proud of myself. I have worked so hard on myself this year and I’m really starting to see the benefits. It’s a practice, an endless process, and it really is quite wonderful.

Last year I started working with Jody Shield and her team and became a founding member of TribeTonic, an amazing guidance, healing and spiritual support system of mentoring, live sessions and endless support. The tag line is ‘get your spiritual six pack’ and I can honestly say, with a lot of help from Jody and Jeanine (Gasser) I am well on my way there. This year I have put a real focus on healing sessions, meditations and being open to what the Universe has in store for me. It’s helped me see the positive in every situation by reminding myself I’ve got through things before, and will do so again. As Jody always says, you are not your mind, and always be in your ‘yes’.

It’s interesting how I’ve recently realised that as a child I was actually quite spiritual, but as a teenager, trying to be cool (not that I ever got anywhere near) I dropped it all in favour of things slightly more acceptable for a kid in the late 90’s. From about the age of ten onwards I developed a strong interest in crystal healing, reiki and aromatherapy. I had my own little collection of stones and oils and an array of books my mom’s sister passed on to me. I had meditation cassette tapes and often listened to them on a Sunday afternoon before the school night blues set in. Then life got in the way and it all gradually fizzled out.

As the years have gone on I’ve continued to feel a spiritual calling but I wasn’t sure what it was, I exploring religion a little but realised that while I do have certain beliefs, it’s not quite the right fit for me. Then I read Jen Sincero’s You Are A Badass. I’d always been a little put off by this book as the first page mentions God, The Universe, Mother Earth etc etc but get beyond that first page and the book opens you up to a whole new world. One you are already living in but didn’t quite notice. After seeing her speak at Future Shapers Live I knew it was time to get over my awkward embarrassed phase of feeling but not being spiritual and just get on with it. I’ve never really bothered what people think about my eccentric ways before and I decided it wasn’t time to start now.

I came across Jody Shield’s book, Life Tonic in a magazine and got my hands on a copy. I struggled a little with reading it (chronic fatigue and brain fog will do that) so I stepped out of my comfort zone a little and listened to the audio book. Then when the Tribe came along it just felt right, so I signed right up. And I have to say it’s one of the best things I’ve done in a long time.

Mentoring from Jody and Jeanine has lead me to read/listen to a rather different selection of books than in previous years. My new favourite genre of books are spiritual self help. I’ve recently finished Light Is The New Black by Rebecca Campbell. A beautiful selection of poems, prayer, journal prompts and insight into the spiritual world. A calming and peaceful read this is definitely one I’ll be returning to time and time again. Currently on my audible playlist is Big Magic by Elizabeth Gilbert who has the most soothing voice I’ve heard. I’m so glad I chose to listen to this on audio book as I don’t think I would have felt the same effects reading it on paper. Even if you aren’t in touch, or haven’t got, a spiritual side I’d definitely recommend both of these books as they create an escape from the chaotic non stop world we live in today.

As I’ve got back in touch with my spiritual side, rediscovering who I am, I have slowly grown my collection of crystals, guided meditations, yoga flows and breathing exercises, all of which are extremely helpful when it comes to living life with both physical and mental health issues. I also journal more regularly too.

I remember endless journalling starting around the age of nineteen when I was training to be a nurse. Each night, or morning depending on my shifts, I’d write sides and sides of A4 about my innermost feelings, journals which I still have to this day. Again, it’s something that stopped, this time around the time I became unwell at twenty three. My thoughts all just felt too overwhelming and it was easier to bottle them up and file them away as opposed to getting them on paper. I’ve since dabbled with journalling but 2018 has proven to be a year of both insight and relief by getting things down on the page. I have a beautiful hand crafted leather bound journal that I take everywhere with me and is more like my 2018 Workbook than just a journal.

As I mentioned above, discovering and working with everything the spiritual ‘you’ has to offer is a practice, it never ends, and it never fails to surprise and delight. It’s helping me cope with chronic illness, change and the stress that comes with every day life. I have a new morning routine which consists of meditation and writing before work and I try and do the same before bed. I’ll add some relaxing oils to my burner and set aside half an hour for myself, to be undisturbed, no phone calls, emails or social media, just me and everything that I am.

So don’t turn your nose up at spirituality, you just never know what you might discover, after all now is as good a time as any to try…

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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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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?

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Disability Pride Brighton

Before we get started, lets clear one thing up. This is DISABILITY Pride, no requirement to identify as LGBTQ+ required, although of course, that’s absolutely fine, I can personally vouch for that! So many people I’ve spoken to or heard about thought the event was for disabled LGBTQ+ people, but it was for all disabled people, friends, families, carers, assistance and pet dogs included.

The wonderful organiser decided to set the event up after an awful experience her own disabled daughter had out and about in Brighton (read here) and it was held on the same day as New York and Italian Disabled Pride. It was a small, but action packed and incredibly eye opening event. In addition to the event Brighton Dome also held an interactive exhibition on invisible disabilities (find out more here)

My wife and I both attended and had a brilliant, if not emotional, afternoon together. I promptly got glitter painted on to my face (which I am still finding in the house, and at work, now) and headed over to Lunch Positive Community Cafe for a tasty bruschetta and possibly the most delicious fudge cake we’ve ever eaten. There were inspirational speeches, live music, and a community area where there were a few charities we managed to have a chat to. We also bumped in to a couple delightful Dog A.I.D. pooches again and had a brief cuddle or three. There was plenty of space to chill out and step away from the madness, and I felt more than comfortable using Sticky (unique I know!) to help me get around.

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Just around the corner from the event is Brighton Dome, a beautiful old building which house the Hidden Project exhibition. It was an interactive display of art based around invisible illnesses. I’ll let you check out the photos below and the website for full details. It was an evocative and emotional experience for both myself and my wife who also has health concerns. The most poignant part of the exhibition was a video which actually brought me to tears. I was sat in the middle of the room full of people engaging with the exhibition crying my eyes out because one of the people on the video, Robbie, summed up what I’ve been trying to find the words for for years. He explained how he wanted people to see the old Robbie, and how he wanted that person back. all I can say is thank goodness for sunglasses! I also managed to do a bit of fangirling as I spotted a blogger I follow, Natasha Lipman, on the wall.

I’ll stop rambling for now and let you enjoy the exhibition through the photos I managed to take of each exhibit.

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Finally the short afternoon came to an end but we had to take half an hour sitting on cosy seats in a cafe before I felt up to travelling home.

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Last but not least, a few useful links in from the day:

Southdown Housing

Brighton & Hove LGBT Disabled Group – contact daniel.cheesman@switchboard.org.uk

Disabled People Against Cuts

Possability People

No Holds Barred Circus/Performance Group

Hidden Project

Brighton Buses Accessibility Guide 

 

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A Day With Fibro and ME (Vlog)

Whilst I will never be a filming profession, hand in my notice to my day job and become a full time YouTuber, or even create anything remotely entertaining, I have had the desire of late to create a video that shows what my typical day off is like.  And so my first video (click the link here) was born. I taught myself to edit in half an hour, spent hours trying to put cover music on it and even longer braving the set as ‘public’ button. So for those of you who are interested (don’t feel obliged) here is my first ever edited video.

It mainly shows me drinking tea, having a rest and sitting with a very protective nurse Trinny on my lap. I hope you enjoy it.

Karen x

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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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Organic Life

On a cold, damp poorly weekend, its good to know my kitchen is full of organic fruit and British grown apples to snack on. How colourful and delicious does this fruit bowl look! 

Never one to take much interest in organic produce I’m now a complete convert. Often too fatigued to rustle up anything too adenturous, or not wanting to waste what little energy I have standing in the kitchen, my recent discovery of Abel & Cole has been just what the doctor would order (should they ever decide to take interest in my health). With a selection of crisp apples, super sweet bananas and lemons big enough to make a drizzle cake with after a squeeze in your water or smoothie, I’m in ccomplete heaven. 

Have you ever tried a home delivery service of organic and local produce? I’d love to know what your thoughts were.

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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