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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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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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Beautiful Birmingham

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

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

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

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It’s ME and Fibromyalgia Awareness Week

Every week, every day in fact seems to be awareness for something nowadays but this one is one that I feel is really important. Invisible illnesses often get less recognition because you can’t see what effect its having on a person. Here’s a few of my favourite blog posts and websites to help you get clued up about the illnesses I live with and how they affect my every day life.

Meg Says

Action for ME

ME Association

Once Upon A Fibro Time

Cloudy With A Chance of Pain

Fibro Blogger Directory

An of course… my blog!

If you know of any others that you think should be added to the list let me know!

Happy reading 🙂

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The Best Of 2016

2016 has been a year of ups and downs. Although it’s been the toughest year so far health-wise it’s been a pretty wonderful year in so many ways. I started studying again, got myself a great new job with some good friends and my wife finally let me buy a sideboard!! I could post hundreds of photos and list even more great things that have happened this year. Here’s just a few of them, in no particular order whatsoever.

Getting to spend time with my wonderful parents, including trips to Birmingham and them staying with me in Brighton just before Christmas.

Spending quality time with good friends. From a drive through the Sussex countryside with my friend and her husband (and getting to meet her many fluffy kitties) to my bestie taking me on a trip through the Ashdown Forest to a Llama Park. Definitely the best birthday ever! Then there’s lunch with a really special friend just before Christmas.

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I felt so lucky getting to stay with our friends in their flat overlooking the sea on the Isle Of Wight in July. Quality time with my wife, two bloody great mates, and getting to see endless wildlife (and donkeys) made this one of the best trips I’ve ever had.

Of course, no review of 2016 would be complete without mentioning my trusty sidekick, Trinny the kitty. She’s the best companion and nurse a woman could wish for, even if she does spend a couple of hours every evening shouting at us. We also took on Bear the hamster this summer too. He appeared to be the hammy no-one wanted so needless to say, he soon came home with us.

My wife and I have also shared some fun times on Brighton beach and pier this year as well as other trips out including the stunning Arundel Castle, and one heck of a splurge of a shopping trip at Gunwharf Keys in Portsmouth. I’ve also spent some quality time on trains, of course, and even been on a few Route Master buses with dad in London.

And of course, there was also Autumn, my favourite time of year in all it’s colourful beauty.

I could go on, the list really does feel endless.

Happy New Year! Here’s to a fabulous 2017!

(A big thanks to my wife for buying me a pretty awesome camera for my 30th that inspired me to take so many photos. I’m a lucky lady!)

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Artists Make The Most Interesting Friends

Meet my friend Stuart. We met when we worked for the same company three years ago at a rather boring work’s event and bonded over a love of all things peculiar; he likes lampposts, I like trains. We decided that night we were separated at birth. Despite the fact I can’t even draw stick men, Stuart and I have over the years created ‘Sinister Dinners’, a creation of evil raging meals that are out to kill, ‘Amish Pete’ which was a drawing of our friend that I sent terribly wrong. Then there was the mushroom picture. The less said about that the better! Anyway, meet Stuart:

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Prime Minister Stu.

Stuart, or Professor Mystery as he is also known, is a quite brilliant artist. His own unique style and input of lampposts in most of his work makes for some flippin’ amazing artwork.

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Prof. M at work.
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Showing his work at a recent art exhibition.

When he’s not watching Doctor Who, Stuart can be found in his studio, or sat in a coffee shop, sketchbook in hand. In fact, it’s the one thing he never leaves the house without. He draws in ink ( I heard a rumour his pens cost £18 each!) and is happiest when his hands are black with ink from a long day’s drawing.

As some of your are probably aware, I’m looking to start my own stationery business. As a fellow stationery addict, Stuart has offered to design some artwork for my logos and website. Our first proper ‘meeting’ (tea drinking, discussing trains and clipboards) was last week and five minutes after getting his sketchbook out things were already taking shape.

Check out Stuart’s Facebook page to see lots more of his work here, have a read of his intriguing blog and follow him on Twitter.

Karen xx