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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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She’s A Trainspotter

If you know me, or are a regular reader of my blog, you’ll probably know I’m not your average kind of woman. But what usually shocks people the most is that is the fact I’m a trainspotter. Yep, you got it, a trainspotter. I was born to be one, it’s a past time that runs deep in by blood passed on from generation to generation. I was lucky though, I had the best teacher to show me what to do, my dad.

I don’t wear an anorak, nor does my dad, or most of his spotting friends. They’re just your average person, with a few exceptions of course, dads, husbands, daughters and brothers, just like you and I.

Over the years dad took me to all sorts of places. Starting life in Lancashire my brothers were well versed in all things trains by the time I was born. On a trip to Blackburn as a small child I ended up in the cab of a 150, and from then on, I was rarely seen without my numbers notebook.

Living in Birmingham from the late 80’s meant I was lucky enough to go trainspotting in all manner of stations great and small. I met some characters to say the least that we still talk about today. I could spot a diesel engine a mile off and could catch the numbers of slam door coaches as they whizzed by in the days of British Rail.

As I grew into my teenage years I stopped spotting as much, but my love of trains never ceased. In fact, I developed a soft spot for the class 142, a Pacer, Railbus, whatever you wish to call it. Mostly hated amongst commuters, there is actually a strong following of Pacer fans around the UK and I’m proud to be one of them. From my early 20’s it became my mission to go on as many as possible, especially those with original seats. Here’s a few photos from my travels in Lancashire over the last decade, forever hoping to spot a Pacer with original seats…

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Preston 2017
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142 003 at St Annes On The Sea, 2017
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Glorious original seats on 142 003.
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142 013 in Lytham, 2017.
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Magnificent to say the least…

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Lytham, 2009.
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En-route to Bolton from Manchester Victoria, 2011.
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Dad counting how many Pacers we’d seen that day, Bolton, 2011.
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Bolton, 2010, with my favourite trainspotter. 
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In action, Bolton, 2011.
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Look how happy Pacers make people!
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“The hardest life if that of a trainspotter”. Dad getting his numbers down at Manchester Victoria, 2011.
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Bolton, unknown date.
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Once of my favourite photos taken at Bolton, date unknown.
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Manchester Piccadilly, 2011.
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Manchester Victoria to Burnley, 2014.

I could share a thousand more photos of dad and I on our travels. You really haven’t lived until you’ve been on a Pacer. I’m sure dad would confirm that, he’s travelled the length of and breadth of the UK trainspotting over the years and hopes to go on as many as possible before Northern Rail withdraw them in 2020. It’ll be a sad day, but I’ve plenty more bumpy. squeaky, utterly brilliant rides left on Pacers yet!

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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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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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Coast and Countryside

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

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

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

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Barbed wire surrounded us everywhere we went.

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Perhaps the tiniest poppy in Sussex.

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

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Roots clinging to the ground.

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Upturned trees pulling the chalk out the ground with them.

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This doesn’t do the sea view justice.
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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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Climbing Elm Grove

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

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Raystede Animal Sanctuary – Sussex

My wife and I have recently bought a car. The car of my dreams, a lifelong wish – a Smart Car. She’s called Suzie, and last weekend we went on our first drive out in her to the countryside, roof down, wind in my hair (not like the movies, I looked like Donald Trump when we got home!). We’ve wanted to visit Raystede for many years but a two hour trip on public transport wasn’t going to happen, it’s less than half an hour from our house in the car! Animals and wildlife are such great therapy if you suffer from any kind of health problem or are just in need of a destress, so we probably couldn’t have picked a better time to go. We spent time being nuzzled by horses, followed by geese, shouted at by moorhens and shown off to by the resident male turkey. Its wheelchair and disability friendly too.

Raystede are such an important and wonderful charity,. They rescue up to 750 battery hens every year, many of which never regrow their feathers, re-home every kind of fluffy animal you can imagine and provide wonderful habitats for wildlife such as hedgehogs and bats, and havens for insects and birds alike. If you are ever in Sussex I would strongly recommend a drive into the glorious countryside to pay this fantastic centre a visit.

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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