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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?