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

My story: Olivia

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I was diagnosed with type 1 diabetes in 1973 when I was a baby, which means I have lived with my condition for 45 years. My diabetes is an auto-immune disease, which means I used to need to inject insulin six times a day, every day. Now I use a pump and a continuous glucose monitor (CGM). This means I have around-the-clock insulin via a tiny pump - like the ones in hospital - and blood sugar readings via a sensor in my skin. Because of this, I have not needed an ambulance or used A&E. 

People can die from diabetes so things need to be kept in balance, which is heavy on mental health.

Then, five years ago I was diagnosed with multiple sclerosis (MS). This is another auto-immune, life-long condition that affects the central nervous system with different people experiencing different symptoms. My MS causes me to get tired if I have a busy day. For example, yesterday I met with a friend and we shared tea and chatted for hours, then I travelled home. Later, I fell asleep on the couch mid-afternoon. 

When I get ill like a cold or flu, my symptoms can increase so I can get more unbalanced. I don’t have night vision any more so need to switch the light on for activities like using the toilet in the middle of the night. My symptoms can also increase when I'm really stressed.

Both of these conditions have various medical effects on my body, which has resulted in me working part-time, so I can have a good work/life balance. They can also affect each other - if my blood sugar is too low or too high, I get more unbalanced. 

From a mental health perspective, it's been hard. As a young child, I was told my organs would start failing at 20 years old and that I would die by the age of 30. These were some of the views from the 1970s. I was also told I couldn't have children, get married or study at university. That is very frightening to grow up with. I've also had complications with my health - I have had 45 laser surgeries, I have nerve damage so I have to take pain medication, I have stage three kidney disease, and I've had a mini-stroke. 

There is also the aforementioned MS. These complications include fatigue, unbalance and memory loss when I'm tired. I have early stage relapsing-remitting MS so I also take medication three-days-a-week for life. The medicine feels like a bee-sting for about 30 minutes. I am also more prone to infections; I have had two bouts of septic shock and once had a cold that ended up as pneumonia. 

All of this can be tough to deal with.  I developed Dysthymia or persistent depressive disorder (PDD), which causes long-term low-level depression when I was a teenager. I had two bouts of diabulimia - an eating disorder that type one diabetics are prone to - that was also in my teens and late 20s. 

I have recovered now from that. My diabetes is in much better control and I eat normally. I decided to create a bucket list, which included traveling, studying at university, getting married and having two children. Right now, I work as an online psychotherapist - travelling distances means I can get fatigued - and to keep me at my best for work, I have adjusted how I work so my clients get me at my best. 

My support network has been amazing - my husband and children, my dad, NHS staff including diabetic doctors and DSN nurses... the list could go on. And all I things I was told I couldn't do, I can. I'm glad that diabetics are not told scary things like I was - they're just untrue.

My story: Tesni

Tesni on her wedding day

Tesni on her wedding day

As part of Mental Health Awareness Week, we're helping share the stories of people with mental health conditions and also people who have invisible disabilities who have seen an impact on their mental health. Today, we speak to Tesni, 33, from Wales about her story: 

"It all started when I was nine years' old; when I developed Fibromyalgia.

I wasn't able to keep up with the other children at school, I struggled walking home and I would fall asleep on my lunch box during my lunch break. Understandably, my mum was worried; I had gone from being a hyperactive child who spent all her time running around with animals on our smallholding to constantly being tired and in pain. She took me to our primary care doctor (GP) who would spend the next four years putting me through a barrage of tests trying to find out what was wrong with me.

It was at 13, I was sent to see a specialist for Myalgic Encephalomyelitis (also known as M.E). I was in the hospital for a week, on a 500-calorie-a-day diet. At the end of the week, he told me there was nothing wrong with me; I was fat and lazy. From then on, I was on a 1,000-calorie-a-day diet and pushed myself harder.

In my mind, everything was my fault - the tiredness and the pain - and I needed to pull myself together. Everyone else could do it, so why couldn't I? To this day, I still struggle with this mindset.

My GP, still convinced that I did have M.E, put me on anti-depressants. By this time, I was also struggling with anxiety and depression, but neither of those things had been discussed with me and I didn't know how to talk about them. After five months, my mum got a panicked phone call from our GP telling her to take me off the anti-depressants right away as they had been linked to suicide.

At 16, I was finally diagnosed with Fibromyalgia, but by this point, I wasn't listening to my GP. I didn't hear him carefully explaining to me what I had was not M.E, it would never go away and that I had to learn to manage it or it would slowly take more and more away from me. I was convinced that I could live my life like everyone else; I just needed to push harder. I still thought one day it would go away if I could just sort my head out. Around this time, I started to self-harm. At first, I did it for the release. Then I did it because I was angry and frustrated, and it was the only way I knew how to express myself.

At 18, I left home and got my first job, working in a mental health care home. I was so out of my depth and got horribly bullied there because I wasn't able to cope with the physical demands. A senior member of staff even took my then boyfriend, now husband, to one side and told him I was making it all up.

He said he had worked with people with M.E before and there was no way I had it and I was just saying it so I could get away with being lazy.

At 20, I became pregnant with my son and I couldn't cope. I didn't manage to quit smoking until I was four months pregnant. I got awful pre- and post-natal depression (PND) and couldn't bond with my son when he was born. I struggled on for two years like that until I had a conversation with a friend about her PND, which got me to finally go to my GP and I reluctantly tried anti-depressants again. Luckily this time they worked for me.

Slowly over the years, I've addressed the fact that I don't have M.E and that I have Fibromyalgia (despite being told by my GP that I should "just pick whichever title I want" as they were just "terms we use when we don't know whats wrong". I've finally accepted that it will never go away, and I've learned about my condition and how to cope with the pain.

Of course, I still struggle. There have been moments that have broken my heart. Like not being able to hold my son's hand because the pain in my hands was too much to bear. Having to accept that I couldn't have another child - my health had become so bad that I felt I couldn't give my son the attention he needed so it'd be unfair to have another. There have been times I've felt stripped of all dignity; having to apply for Disability Living Allowance and Personal Independence Payment; having to lay bare all the things I struggle to do and how dependent I am on others, so that someone can come and judge me to see if I score enough 'sick person points' to be given the benefit need to have any quality of life.

Being called lazy will always rip me apart inside. I'll always hide how much I hurt and how tired I am. But slowly I'm getting my head around the fact that it's not my fault and it's not because I'm weak."

If you've been affected by Tesni's story, please drop us a line using the contact us page.