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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…