Living with Chronic Illness (2026)

24/10/2023

Escaping the shadows

The commotion progressed along the dull anaemic lit corridor, a distressed voice reverberates among the calm of nurses. The door flung open and there he was.

The nurses settled in the man. His movements quick, jerky, his nerves elevated. The calm of a room on my own was shattered by an almost unnatural energy.

After normal, or near normal introductions, he told me. It burst out in his own disbelief and a fear that filled the room. He talked fast, as someone condemned.

Shaking, he looked me in the eye, I’m going to die, he said. This young man in his thirties measured his life in days, weeks and hours.

He wanted to talk, wanted to move, he had to escape. Yet he was dying from inside, being eaten by his own rogue cells, no pacing up and down could release him from death growing inside him.

I remember the sound of a thin beer can being roughly put down. The metallic sounds he knew so well. He went out and was back again with more. The whole world couldn’t do a thing to save him. He was cruelly caged within his own body.

After several days, I’d recovered enough to go home. I left him alone with a finial hollow farewell. The cruelty of a absurd goodbye.

Walking was difficult, my body was so weak. I stood in the dark lobby of the old Hospital, ahead was freedom. The 1930s dark wood door frame made a picture of the freedom that lay just a few steps further.

Melting sounds of laughter and traffic, of people alive was overwhelming. The colour bleached in summers sun, the scent of life was intoxication.

I had escaped the shadows, I stepped back into the world of the living. The secret battles for life were behind me, at least for now.

My weight was supported on either side, I stepped forward to embrace life.

14/06/2023

Without the people who selflessly give blood I would have died as a very young baby. Without people giving blood I would have died as a child, as an adult. They have been my hope and my life.

My red blood cells die in days because of a genetic condition. Everything I am able to do, I do because they do something extraordinary, unseen, unpaid but appreciated more than I can ever say ♥️🩸♥️

16/05/2023

I just wrote this under some else’s post. It part of the reason I share things that are difficult in my life.

“It’s part of life, part of who you are. If we all just show ‘cuddly kittens’ on Facebook that creates a falsehood and those who suffer feel they are alone, the only one that doesn’t have a cuddly kitten life. If one person recognises part of themselves by ready your post, that person will be less alone and feel stronger for it.

Thank you 😊”

03/03/2023

The Danger of Being a Brave Child......

This might seem like an odd post to write but there is a very real danger of being ill as a child and being brave.

I know because it has damaged my whole life, as I'm finding out with the work I'm doing with a phycologist. In fact you could go as far as saying it has blighted or even ruined my life.

Like so many children with PKD hospital visits, doctors, being ill and hospital admissions were an integral part of my life. Children have many coping mechanisms but the barrier between the fear of pain, treatment and being left alone in hospital is obviously ones parents.

Unfortunately some children, including myself, learn not to show any fear. I suppose when your young and an adult says "what a brave little boy" you feel your pleasing them. It's being strong, so it feels good. It can also be because if you cry it upsets your parents and they are your protection, your comfort blanket. So showing fear makes them seem weak in your eyes. If they are weak they can't protect you and you feel very vulnerable.
A child might think hold fear in because they are protecting their parents from what they can't cope with. After all what parent can cope with seeing their ill child terrified in hospital.

I took great pride in not showing any fear, talking with the staff, laughing, anything but revealing the terror a little child must feel left alone to have a blood transfusion during the night or having an operation. I cried only once as far as I can recall, I was just six years old and I remember changing behind a screen tears rolled down my cheeks before I had my spleen and gallbladder removed. I was aware it was a big operation but I hid my tears behind the screen and came out confident and smiling.

I never told my parents of my fears, I buried them.

This might not seem so bad but it meant I never talked to my parents about my fears, I held everything in. This was the beginning of a loneliness I'm only just being to able to let go of at the age of 51.

That buried fear was very isolating and became a theme of my life. I was bullied allot, I hid that from teachers and of course my parents. I was beaten up, I never ran away, I just smiled at them because it was the only weapon of defence I thought I possessed.

The PKD combined with Gilbert's disease I have meant I looked very yellow as I've talked about in other posts. I didn't tell anyone about people staring and pointing at me, most hurtful of all being rejected by girls. I'd learned to hide it all. Even an unhappy marriage of 21 years was hidden from the world.

I've had good times in my life, happy events but deep down I have kept a frightened little boy locked in my soul.

Through this site I've met the love of my life,
Maaike Eijgenraam who is such an amazing person and is always there encouraging me to grow. She's a total inspiration and the most adorable woman, it's because of her I started on this journey of understanding. I owe hers so much ❤️

I'm growing, understanding and learning about myself. The phycologist is wonderful, I feel I can breathe as if for the first time and I can be myself.

I wish I'd screamed, cried, hugged my parents and told them I can't cope.

Perhaps strong children cry...

02/03/2023

Time to rest. Essential for some people who are ill. Normal life takes its toll, struggling your body tells you it can’t cope. It difficult not to see it as wasting life, and trying to see it as an investment is really difficult. Without the body can take its revenge!

Perhaps strong children cry...

01/03/2023

The internet has changed everything. The first time I looked up PKD I only found things about cats, who can also have the condition (I don’t think it means we are related).

The internet has allowed people with rare, unusual and weird illnesses to come together. It enables people to connect.

Like many people I’d not met anyone with my blood condition until the internet. 50 years without seeing people who was like me. It was one of the most extraordinary things to meet others and see how they dealt with PKD.

I had seen black people talk about not being represented and not seeing people that looked like they looked on the television.

For many people with rare conditions, there is literally no contact with anyone like them. I was told there were a few people but somehow it wasn’t possible to see them.

It almost felt like what I had wasn’t real. Perhaps I was making it up. That felt horrible.

Now PKD people are in contact globally. This is, I think, as important as the advances in medicine.

28/02/2023

From my main page… I posted this today. It is really scary being so open. It embarrassing, awkward and it makes me worried it is craving sympathy. I’m not, it is my attempt at being open and maybe helping others. To help people that don’t understand and perhaps connect with others who hide feelings sad or ashamed :

Today 28th of February is Rare Disease Day.

I have Pyruvate Kinase Deficiency (PKD).

Thanks to blood donors, modern medicine, nurses, research scientist and doctors I am alive today. I never thought it would be possible to live this long. If I’d been born thirty or fifty years earlier I would have died in my first weeks or even days.

I have to take all these medicines, some more than once a day. The injection is over 8 hours, I have that five nights a week, it removes the toxic iron left by the transfusions. I have blood transfusions every three weeks, normally two units of blood. There are many tests, scans and hospital appointments too. It’s endless.

Life is compromised and it’s not possible to know if I’m well enough to do anything when I wake up. Extreme tiredness, fatigue that can wake you up in the night, as well as pain, means several days a week I can’t do much and have to rest in bed. Nowadays I feel ill all the time.

So many people have worse problems than I do, far, far worse. We pass them in the street everyday. Often unseen with their own struggles. I am just so thankful to all the people who have supported me throughout my life, grateful to be alive, everyday feels like a bonus.

Like many people with my blood condition (PKD) there are times when I’m very ill and times when I do better. When you get older that takes its tole. Not just the PKD but the medicine is damaging too, but without it I’d be dead. It’s a fine balance between medication and the blood condition. One that has lots of compromises and is often based on guess work.

Learning to let go, to accept is something I find extremely difficult - I’m a very impatient patient. I’m an extremely active person trapped in a damaged body. It’s as if my very nature is held hostage.

Every day is worth living and everyday has beauty. I’m one of the lucky ones because I’m alive, loved and love life. I’m lucky because I’ve nearly died several times but I’m very much alive and determined to live the best life I can.

I have made this post public because people with rare diseases shouldn’t feel they have to hide in the shadows.

11/11/2022

Mostly true but most people consider me to be crazy. Of course people judge but perhaps it’s better to ask questions.

28/10/2022

Little things in hospital can make all the difference. One of our nurses is very talented at displaying things. This charming Autumn 🍂 display is in the foyer of our hospital.

I’ve not been well for a couple of months, totally exhausted. Certainly not the same as being tired, it hurts, and your body feels like it’s been in the tumble dryer. It causes insomnia, feels very odd and ‘brain fog’.

Because I’m not well my veins are difficult. It took three attempts to get a cannula in. When I was a child it could literally take hours and sometimes I received a transfusion through an artery in my neck.

Fortunately, I’m not ill enough admitted to hospital but still have wonderful care. Last night we had a flu vaccine and the week before a Covid booster. It’s very easy to have a conversation with a doctor on the phone.

I have five infusion per week, each over eight hours, its a drug that removes the excess iron left by the transfusions. Excess iron is highly toxic and damaging, especially to the liver, heart. Thankfully, the damage is minimal.

13/10/2022

Insomnia caused by PKD?

Like many things related to PKD, I think this is a really difficult question to answer. I have been suffering from insomnia for quite a long time. I see others have too. Obviously this is important to many of us as we struggle at the best of times.

Yet, insomnia is a very common problem. The reason it might be connected, could be to do with us being exhausted ? It sounds strange, but It’s difficult to sleep when you’re body has discomfort due to fatigue and exhaustion.

Like many of us, I push myself to work. Crossing what I can cope with on a regular basis. That uses adrenaline, and perhaps other chemicals in the body, but they don’t go out of the body immediately.

It feels to me that my mind is over active, full of thoughts, yet my body is exhausted. That leads to interrupted sleep and creates disruption to sleep patterns.

Does this seem familiar?

02/10/2022

My mother took me here when I was young. I kept in allot of my emotions regarding being ill. My blood was checked every morning at the Whittington hospital, or was it a few times a week. Time plays tricks on one’s memory.

My blood dies very quickly and it was important to make sure it didn’t reach dangerously low levels. The adults around me were worried about how this would change me, how my relationship with needles, hospital stays, operations and insecurities might damage me.

When I had a blood transfusion, which happened allot, I remember the nurses and doctors being wonderful. They didn’t like hurting me, putting needles in me again and again. Young veins are difficult. They tried my arms, hands, legs, feet, head and occasionally the needle was put in one of the main veins in my neck. I was given hot baths to try to make the veins larger, they tried everything to make it as easy as possible for me.

I wasn’t scared, I dealt with the pain. The nurses and doctors were there to help me, they were my friends. They were lovely and they laughed, but most of all there was trust. They told me why things were done. We talked together and they showed me my blood under the microscope. So I was with them, part of what was going on, not a patient or victim.

Aged six, I had an operation, removing my spleen and gallbladder. I was literally cut across my body, from one side to the other. This helped allot. I remember the doctor sitting on the side of my bed drawing a diagram of what he was going to do.

I’ve had psychological support at different times in my life. Fear of death, nearly losing my life and hospital treatment were never the real problem. Being different, feeling like I often didn’t belong were far more difficult.

That became almost impossible to cope with when I became a teenager, because by then I looked bright yellow. I was laughed at, attacked, stared at and told I was ugly every day. There was no escape at school or in the streets. At school children would stay clear of me. I was stared at all the time, people whispering around me or recoiling in horror. That has profoundly damaged me. The feeling and pain are always there deep down but sometimes they overwhelm me, even now.

Without friends, family and psychological help I wouldn’t have made it.

19/09/2022

On Being Ill
By Virginia Woolf

"...Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rinse the mouth — rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us — when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature. Novels, one would have thought, would have been devoted to influenza; epic poems to typhoid; odes to pneumonia; lyrics to toothache. But no; with a few exceptions — De Quincey attempted something of the sort in The O***m Eater; there must be a volume or two about disease scattered through the pages of Proust — literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear, and, save for one or two passions such as desire and greed, is null, and negligible and non-existent..."

Living with Chronic Illness