My story: Lisa

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Narcolepsy is a rare long-term brain disorder that causes a person to suddenly fall asleep at inappropriate times. The brain is unable to regulate sleeping and waking patterns normally, which can result in excessive daytime sleeping, sleep attacks, cataplexy, sleep paralysis and excessive dreaming and walking in the night. This is my condition and while it doesn’t cause serious or long-term physical health problems, it can have a significant impact on daily life and be difficult to cope with emotionally.

One of my first memories of the condition was when I was twelve years old. I had opened my eyes, only to see my teacher looming over me: “Is there something you would like to tell me?” she asked. I had just overcome a sleep attack, and I had no clue where I was or why everyone was staring at me. I burst into tears, and my mother had to explain to the teacher that I was neither lazy nor drugged - I was sleepy. 

This was just one of many symptoms, which my friends learned to recognise. During laughter, my knees weakened, my head would drop and my speech slurred. An exceptionally funny joke could send me into a motionless state of paralysis on the floor for up to a minute. Friends were often amused but also alarmed by this, and they learned to catch me before the fall. 

At night, I was restless - haunted by vivid nightmares and physically paralysed for what felt like hours on end. Terrors visited me during the day as I retreated to the school toilets to sleep, leaving me confused and frightened. Reading, which is my favourite thing in the world, became a frustrating, demanding experience, and I frequently fell asleep during stressful exams. 

Teachers acknowledged my situation, but since my grades were fine, they didn’t see the need for support. Some doctors suspected that I was depressed, but the diagnosis wasn’t right. I tried alternative diets, acupuncture, meditation and every possible variation of a healthy lifestyle. Eventually, everyone came to the same conclusion: the sleepiness was just a phase - it would all go away after puberty. 

But it didn’t.

It wasn’t until I was preparing for an exam about mental health, I stumbled across sleep disorders in a search engine. As I dug deeper into the digital archives, I discovered abstracts that perfectly addressed my specific symptoms. I eventually gained the confidence to attend a sleep clinic where I completed two tests - the polysomnogram (PSG) and the multiple sleep latency test (MSLT). I was diagnosed with type 1 narcolepsy with cataplexy.

I don’t think anyone likes labels or being put in a box, but, personally, I found the diagnosis to be an enormous relief. I consider myself to be very lucky to still be able to live a relatively normal life, and I am well aware that many others do not have this luxury. As I now engage openly with people around me, narcolepsy has become a channel for empathy, conversation, and constant learning. Most importantly, I have gained one great source of strength; knowing that I am not alone.

A final anecdote to prove this point; I still retreat to a shower room to sleep during a working day. It’s neither comfortable nor glamorous. I have recently learned that I am not the only one who has to resort to this cold, cramped room. This room also functions as a safe spot for breastfeeding, praying, taking medication and meditating. 

Perhaps it’s time for us all to give each other a little more space.

My story: Natalie

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I was diagnosed with having cystic fibrosis at two weeks old. It's a genetic condition and so it's something that I have had to deal with throughout my life. Now, newborn babies are screened for cystic fibrosis with the heel prick test shortly after birth, but I was diagnosed because I had something called Meconium Ileus; a bowel blockage that required me to have surgery as a baby.

It's hard to explain to people on how the condition affects me as it's hard to know where to begin. 

There is no cure for cystic fibrosis. I have to go through hours of laborious treatments every day to try to prevent the rate of decline of my body. My condition affects my lungs, digestive system and other organs, making it a very complex condition with lots of challenging symptoms to deal with. 

These include: how the thick mucous in my lungs traps bacteria, which causes infection and inflammation, which scars my airways and makes me more susceptible to future infections and lung function decline; how the mucous in my digestive tract blocks the release of digestive enzymes from my pancreas so I have to take tablets every time that I eat in order to digest food and prevent malabsorption of vital nutrients; how I'm at risk of CF-related diabetes because of these issues with my pancreas; how I'm prone to heartburn that makes it feel as if my chest is being simultaneously burnt from the inside and crushed from the outside; how my digestive system and liver can be damaged from all of the medication that I have to take - I take around 40 tablets, including pharmaceutical medications and nutritional supplements every day. I have numerous inhalers and spend a lot of time inhaling therapies through a nebuliser. I have to do daily physiotherapy and exercise to keep my lungs clear and to maintain fitness. 

But really, each one of these physical manifestations of my condition affects me hugely on a mental level. CF is a condition that is hugely variable by the day or even the hour. One day I might cough a lot, the next I may not. One day I may be full of energy, the next morning I may turn my alarm off in my sleep. One day I may feel like an athlete, and a few hours later be uncomfortably bloated for no apparent reason. It's exhausting trying to identify the causes of these highs and lows, trying to predict them and trying to plan for them. 

I experience guilt almost daily. If I were to do all of my treatments, therapies, and exercises every day, it would easily take me 4 hours. I can't do that every day, so there's always a sense of compromise and the feeling that I could have done more, that I should do more, and that I could always do more, sometimes haunts me.

Then there's mental exhaustion from the logistical nightmare in my mind, trying to optimise my time, prioritise what treatments will be most beneficial or more realistic that day. There have been days in the past that I've ended up skipping treatments altogether because I'm so mentally exhausted from planning and re-planning every hour as my day unfolds that I feel like I've already done everything 100 times over! Every single meal time, I have to consciously think about what I will be eating and decide how many digestive enzymes I should take. After 27 years, it still feels like a guessing game.

And then, there are other sources of anxiety. 

People coughing near me. Are they contagious? Do they have CF, too? People with CF can't meet in person due to a high risk of cross-infection)?

Exercising is crucial for me to maintain my health. I train to stay alive. But what about exercising outside or taking a class in central London? Will the air pollution that I'm inhaling deeply be more detrimental than skipping my workout entirely? 

What about if I get unwell? Who will pay my rent if I'm unable to work? 

Spontaneity? What's that?

Lucky probably isn't the right word to describe my situation, but I have been fortunate, through a lot of hard work and sheer determination, to remain healthy for someone with cystic fibrosis. However, last year I did have to leave my full-time corporate marketing job to go freelance so that I could get some flexibility back into my life and feel able to focus on my health. I had known for a long time that a high-pressure office job with long hours wouldn't be sustainable for me long-term, and I quite liked the idea of a portfolio career, but I still kind of hated that I had to make a compromise. I wrote about my experience making this decision in my blog post, 'I quit my job to save my health'. 

Another big part why I'm so well today is not just due to my own hard work and determination but that of my family. My incredible parents and Nan put in so many hours when I was younger to keep me active and happy, to help me stick to my treatments, and to do hours of daily physiotherapy to keep my lungs clear. They'd be with me at hospital appointments, they'd chauffeur me around so that I could avoid germ-filled public transport where possible, and above all, they are always, always there when I need them - for a chat, a cuddle or mum's homemade chicken stew (a cure-all... almost!). Their unwavering support means the world to me and I absolutely cherish them. There are days when life can feel really lonely. Cystic fibrosis is a lot to deal with. But my family understand my condition better than almost anyone else in my life and knowing that they're always there for me helps me every day. 

Another thing that I'd like to add is that despite all of these daily struggles, having cystic fibrosis has made me the person that I am. Like everyone with cystic fibrosis, I dream of the day that there's a cure, but I wouldn't want to know a life without it.

It's given me determination, self-motivation, dedication, and strength, and given me an incredible perspective on life. I'm very good at taking joy in little things and expressing my gratitude. I understand the meaning of hard work. I train to keep alive and have learned to get comfortable with being uncomfortable. I seize opportunities but don't take stupid risks. I try to always be kind as you never know what someone may be going through; I know this better than anyone, living with an invisible condition. I'm insatiably curious; we have so much still to learn about our bodies and about the world around us. I've learned what it means to have confidence and courage. I love deeply, avoid conflict and never hold grudges. Life's to short to be anything but happy.

Natalie's blog is here: nataliejohanna.com

If you would like to learn more about Natalie's condition please visit: https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis

Former homeless team up with school to help pupils with invisible disabilities

Pupils from Lexdon in Emmaus Colchester workshop

Pupils from Lexdon in Emmaus Colchester workshop

Pupils from Lexden Springs School, Colchester, have created bespoke birdhouses with the help of formerly homeless people at Emmaus Colchester as part of an ongoing partnership between the local school and homelessness charity. 

The Emmaus Colchester upcycling team, which is made up of companions (formerly homeless people) currently being supported by the local charity, have met weekly with pupils from Lexden Springs for the past two years at the charity’s workshop on Arthur Street. The school specialises in supporting pupils aged 3 – 19 who have complex learning difficulties and those on the Autistic spectrum continuum. The ongoing partnership provides the pupils with the opportunity to learn the skills needed to upcycle and restore unused items and materials, as well as providing them with experience within a busy workshop environment.

Emmaus Colchester provides a home and meaningful work for up to 31 companions who have experienced homelessness and social exclusion, offering them an alternative route out of homelessness within a supportive environment. Companions volunteer full time while they are at Emmaus selling second-hand furniture and household goods at its two Emmaus charity shops on the High Street, an Emmaus Works shop on Osborne Street and a warehouse at Arthur Street.

Throughout the partnership, Emmaus companions and pupils from Lexdon Springs have upcycled cabinets to be donated to the school, created Christmas decorations for the Emmaus community house, and restored old chairs for the new Emmaus shop and café that will open this summer on Crouch Street, Colchester. The latest creations to come out of the partnership are the bespoke birdhouses, which will be sold in the Emmaus Works shop on Osbourne Street for £5. Customers will receive a hand-made thank you card from the Lexden Springs pupils with each birdhouse purchased, and all proceeds will be donated to Emmaus Colchester per Lexdon Springs request.

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Billy, one of the chief lead up-cyclers at Emmaus Colchester, has been coaching the pupils. He said: “We work with the pupils from Lexdon Springs every Tuesday, and each school term we give them a new project to work on that revolves around upcycling, painting, priming and using power tools. Each student has varying abilities, so it’s important that the rest of the upcycling team and I make sure to supervise them in a way that suits them.

"It’s not just about the practical skills that they learn though – at first the kids arrived at the workshop slightly dubious, but throughout the term, I have seen their confidence grow, they are more trusting, and they take ownership of the workshop – it’s brilliant to see. When the students finished the birdhouses, I was so proud and pleased for them and I really do look forward to working with them every week.”

Nicky Peters, Post 16 Teacher at Lexden Springs said: “This partnership has exceeded all expectations and has benefited all the students in many ways, particularly in building up their trust and confidence at working alongside unfamiliar adults in a workplace environment. Staff have noticed a big improvement in the communication skills of the students and in their self-esteem, as they are tremendously proud of the work they do at Emmaus. It is a definite highlight of the week for both students and staff.”