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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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Southern Rail Strikes – Trinny’s Story

Controversial as this post may be, I suffer endless abuse on social media for supporting the ongoing rail strikes, not just because I’m from a family of rail workers all over England, but because I travel with a disabled rail card.

In the past conductors and train managers have looked after me when I’ve had panic and anxiety attacks, have been so unwell I vomit, and have struggled with mobility after long journeys. Most of the assistance comes from the amazing staff on Virgin Trains and in the Virgin First Class Lounge. I travel first class as I need extra room, less crowding and extra staff to help if needed. I also need to rest between each leg of my journey. Since moving to Brighton, the routes I regularly use locally have not had any staff and it has been the case, on more than one occasion, that passengers have looked after me, from keeping my mind busy during anxiety attacks, to holding my hand to help me get off the steep train steps with large gaps between the platform and train.

I recently discovered the catsagainstsouthern hashtag, and of course, being the mad cat lady I am, I just couldn’t help but get my Trinny involved. So without further ado, here’s Trinny’s Story.

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A Blog From A Train Conductor

As someone who suffers from a range of disabilities and with worsening health, travelling on public transport is becoming increasingly difficult due to the lack of staff and assistance. My local train company have been the most recent to make cuts, meaning RMT and guards have been on strike. Not because of pay cuts, or job cuts, but because they care about passengers and fellow staff. And despite the abuse I receive, I fully support them. Here’s a blog I found by a train conductor which I think sums up the situation perfectly. 

 

I am a Conductor for Southern Rail and for obvious reasons I have to remain anonymous. But I want to tell you the truth. I will try to keep my personal opinion out of this and go with the facts.
Firstly, the dispute is not just about who presses a button to close the doors, although this is part of it. This dispute is about having a second member of staff on the train who is safety critical trained. Southern are telling you that every train service that already has a Conductor on it, will have a second member of staff on board. This has already proven not to be the case. There have been lots of trains that do not have another member of staff on board, just the Driver. Myself and other colleagues have gone to take over a train and there has been no-one there to hand it over to us. We have taken the train not knowing if anyone requires assistance, if there are any faults with the train and if there is anyone on board we might need to keep an eye on. It has also happened the other way around. We are supposed to be leaving the train and handing it over to someone else and there is no-one there. If there is someone on board who requires assistance, then we have no-one to tell. We could try to ring the station, if the number we have for them works and if they answer it, and that is assuming it is a manned station. We could try and ring Control, but they hardly answer. So, the poor person requiring assistance would just be left, unable to alight at their station.
The second member of staff will now be an On-Board Supervisor (OBS) who is safety trained but not safety critical. The difference being, they do not have any route knowledge and do not hold Personal Track Safety (PTS). PTS means you are trained to go on the tracks in the case of an emergency. We have been trained for this and made aware of dangers and hazards on and around the track. The new OBS’ have not. They are as qualified as any member of the public to go on the track. They did not have training for it. They do not have any route knowledge. They do not which parts of the track to walk along, which parts of the tracks are not safe to walk on. They did not get trained for this. So, in the horrible event that the Driver becomes incapacitated, there will not be a safety critical and knowledgeable member of staff on board. Would you get on an aeroplane without any cabin crew? As they may be there to give you pillows, blankets and refreshments, their main role is safety. In the event of an emergency they are fully trained to assist and deal with it. You just hope they never have to. The same is with Conductors. We are trained to assist and deal with emergency situations, but to the travelling public we are there to check tickets and make announcements. We are a safety measure. You should hope that you never have to see us assist in this way, as this means something has gone wrong, but isn’t it best to have us on there? Just in case.
Now about the pressing of the button to close the doors. This might seem like such a trivial thing, but I can assure you, it is not. The pictures that Southern and the media show you are from the new 387’s that are used on Gatwick Express. They are brand new trains. Although, some of the pictures I have seen from them are shocking, that’s if they are working at all. But, the trains operated on Southern routes are 377’s. The cameras on them are terrible. They do not work in bright light, in low light, they are fuzzy and blurry. Some of them do not work at all. They only show part of the doors, so the Driver cannot see much. Also, the cameras are not in real time. They take shots every few seconds and that is all it takes for someone to slip under the train and they would not see it, so they would not be aware of it. Also, the angle the cameras are at, you are unable to tell if someone has a piece of clothing or hand trapped in the doors. If something like a piece of clothing, umbrella, even a small child’s hand is trapped in the door, the Driver will still achieve interlock (tells him all the doors are safely closed), so they could drive away without knowing. The cameras also don’t allow the Driver to see what is happening on the platform, so if someone is running for the train or if someone slips or falls on the platform, they would not know. With these trains, when the Driver takes the power to move the train, the camera images disappear, so they cannot see anything. We as Conductors, look at the platform until all the train has left the platform, in case something happens.
Southern already operate Driver Only Operation (DOO) on the Metro routes (train journeys that start and finish in London Zones 1-6), but this does not make it right. Most if not all the Drivers who operate on those routes wished they had a Conductor. Also, the distance between stops is not that much, so if an emergency occurred there would be a manned station not far away. A lot of the stations on the East and West Coast of Sussex are unmanned. I know Thameslink are also DOO and this is often used by Govia as a reason to make Southern DOO as well. But, Thameslink went DOO when less people used the railway. The stations were not as busy and over-crowded and neither were the trains. Most of the Thameslink Drivers would like a Conductor back on their train.
Southern stated earlier this year that services were severely disrupted due to unofficial strike action. I can tell you this was nonsense. The high levels of sickness was due to the way we were being treated. Every time we start a shift we have to sign a form stating we are fit to work, mentally and physically. This is due to the Conductor Grade being a safety critical role and we need to be at our best and be fully-concentrated on our job. As our mistakes can cost lives and we could be prosecuted. If we do not feel 100%, we should not be at work. Due to the constant bullying and harassment from senior management, a lot of Conductors were suffering from work-related stress and anxiety, which decreases your ability to concentrate. So, in the interest of safeguarding the public and ourselves, people got signed off sick. They did not want to. They just knew they had to. Now, they have imposed a rule for Conductor’s that we are unable to self-certify any sickness and a doctor will only certify for over 7 days. So, if we are sick and want to receive our company sick pay, we have to be off work for at least 7 days, even if we are not ill for that long. This rule is still being imposed upon us. The other form of unofficial strike action Southern keep mentioning, is the fact we are not working our rest days. Now, each week we can have either 1 or 2 days off, due to them being different days we can end up working 10 days in a row and then we are expected to work the 1 day we do get off. Yes, in some Depots we can get between 7-9 days off every 7 weeks, but this is just time that we have accrued and time we want to spend with our families and friends. Yes, it is true that some people did work their rest days and now they don’t. This is not due to any form of strike action, this is due to Southern treating them so badly, that they have lost any goodwill towards them. It is not striking, it is just taking the time off we are entitled too.
The truth of it is, they do not have enough staff, Conductors and Drivers. They were always understaffed, but people worked their rest days. But in the last 18 months the number of Conductors has reduced and they have not employed enough people to replace them. They want to get rid of Conductors, to improve Customer Service. Rubbish. If they employed enough Conductors to cover all the rostered shifts, then they would not need to cancel trains due to shortage of train crew, as they would have enough. They do not want to improve customer service. They just do not want to employ any more Conductor’s but not have to cancel trains and get fined for it. If they wanted to improve customer service, then they would make sure an OBS was on every train, which has not been the case. They also stated that the Conductor/OBS would no longer have to go to the panel and have any interaction with the doors, which is now not the case. We still have to open the panel we work from, put and turn our key on, step out onto the platform to check if anyone requires assistance and then get back on the train and take our key off. I cannot see how doing that is allowing us to spend more time with passengers to provide customer service.
I know a lot of passengers are fed up of the strikes and the disruption it has caused you and believe me, we are sorry to. We do not like causing this disruption and inconvenience to you. We are just fighting for your safety. Just think of how much disruption there has been on Southern trains in the last 18 months, when there have not been any strikes.

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Books, Reading, Donkeys and Disability

Books are some of my earliest memories; from standing in front of the assembly in reception class winning prizes for having read the most books (and crying with shyness), to raiding book boxes at car boot sales as a child to find an unread Enid Blyton or Roald Dahl book, and bedtime stories every night as a young child. I had a bookshelf full of books by the time I was about eight, and I read them at lightening speed.

As adulthood swept in I continued to read, having piles of books on my bedside table and churning out books faster than the charity shop receiving them once I’d finished could cope with. As a fully functioning ‘grown up’ with a job, chores and bills to pay, reading came in waves but it was always there, and I always had my eye on a book I’d want for Christmas or my birthday. Then came along the disabilities I live with today.

Fibromyalgia and ME cause such fatigue, such brain fog and a great difficulty in focusing. I had to read the same page ten times over before I knew what the words written on the page were hinting at. My book collection grew and grew, eventually causing one of my book shelves to break as the weight of unread books grew too much. I began to grieve the loss of such a huge part of my life, something which had defined me for the last three decades. Finally, Christmas 2015 gave me a nine day break from work which meant I had a little more energy to spare, and in the space of about five days I managed to read the two books my parent’s gave for Christmas – Sue Perkins Spectacles and Steph and Dom’s (from Gogglebox) Guide to Life. I enjoyed reading them so much I ordered and acquired yet more books in the hope I was back in the swing of reading. Then I went back to work and all of that went out of the window.

Fibromyalgia and ME can cause debilitating insomnia, something which has been particularly challenging for me this year. After a countless row of nights with barely any sleep before work I decided to take an over the counter sleeping aid in a desperate bid to get some decent shut eye. Upon waking I felt like superwoman, the first quality night’s sleep I can remember in years, and on the second occasion of taking the tablets this week I read approximately 80% of a book whilst waiting in for an engineer on my day off. That book was Amber’s Donkey.

Amber’s Donkey is a real life tale close to my heart. It’s based at Birmingham Donkey Sanctuary and tells how an abused Donkey, Shocks, and a little girl called Amber help heal each other over a period of months to help them both defy the odds of a recovery. I have sponsored Moses at the sanctuary for a couple of years, and one particularly poorly day when I was staying with my parents ended up in a trip to see them. I had the pleasure of grooming my sponsor donkey and meeting some of the others. Strangely, when I was there, my symptoms eased and I felt so much calmer upon leaving. Having first hand experience of the effect the donkeys had on me as an adult left me eager to read the book and find out how animal therapy can help children and teenagers with illness. I’d had my eye on the book for months since it was released and was determined to get around to reading it.I’m so glad I waited until I was well enough, and I’m so pleased this was my first read in eight months.

The last few days I’ve found myself glued to Booktubers on Youtube (see Jean Bookishthoughts and Reads and Daydreams) and my Amazon Wishlist is ever expanding. I’m hoping to take time out for myself, pushing thoughts of unmade beds, unswept floors and unfolded washing to the back of my head, giving my body the time it needs to rest, and fuel for my imagination in the form of books.

Next on my list to read is Foxlowe by Eleanor Wasserberg and Bodies of Water by V H Leslie. Goodness only knows when I’ll actually finish them but I’m hopeful I’ll get there, soon.

Karen xx

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Spotlight Stationery Box

I never win anything, so when I came across a competition on Twitter to win a monthly stationery box I thought nothing more of it. When I received a message on Twitter to say I was a winner, oh my did I feel lucky. As a lifelong stationery addict, I was about to receive a box full of pen and notebook surprises. And I was not to be disappointed.

Spotlight Stationery run a monthly or bi-monthly subscription box for £25 per box. Whilst this is a little out of my price range at the moment, it’s a great price as a treat for yourself or even a present for a fellow stationery lover (FYI my birthday is in the summer!!). The box is full of high quality goodies, far better than I expected having subscribed to lower priced alternatives in the past.

After reluctantly tearing open the beautiful wrapping and string, I found that the box contains two extremely high quality notepads (A5 and A6 in size), both lined and plain papered. They both come with a little bookmark which I think is a really lovely little touch. It also contains two pencils which my colleagues and I thought were paint brushes on first glance due to their unique design. These are perfect for me as I’ve recently discovered writing in pencil is much less painful for me than when I write in pen, so I’ll be keeping one of these on each on my desks at home and work. There are also some fun little paperclips and a lovely blue pen enclosed this month which writes in a smooth medium blue ink, perfect for birthday cards and letter writing.

What I also love about Spotlight Stationery is that they send a small amount of their profits to a charity called National Star which supports young people with disabilities. Do have a look at their website as their work is both interesting and inspiring.

Spotlight also support young upcoming artists by enclosing their artwork in the boxes, this month in the form of some cute little postcards.

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I absolutely love this box, and I’ll definitely be saving up so I can treat myself to another very soon. I’d definitely recommend it if you need to spruce up your desk area, and revamp your notepad collection. This made for a great start to my week, thanks Spotlight for bringing a smile to my face on this grey chilly Monday.

Karen xx