Living With Hypoxia

My life has changed radically this year. When I think back to how much I enjoyed last year, I am incredulous.

Five years ago, I was diagnosed with inflamed lungs. I had been exposed to damp spores. Gradually it grew worse, and I started to have what were, seemingly, asthma attacks. These were few and far between for a while and then became more frequent depending on the weather.

There has been much discussion about my what ails my lungs, but deep down I began to realise that I would never be fixed and that I had begun my journey towards dying. It was a matter of how long.

I also have a neurological disease which is extremely rare. As far as I know, I am the only one in the UK. It has been progressing for some time. Now I need strong medication so that it doesn’t overwhelm me. My left arm is hard to control. There is damage to my spine, ribs, and, therefore, my lungs.

Some of you may have read learning-to-live-as-a-carbon-dioxide-retainer, and now I have hypoxia as a result of that. Hypoxia is lack of oxygen to the brain. It means I am forgetful, but not as you know it. My memory blips every few seconds. I forget the next word I want to type. I forget I have just made some coffee, I forget to eat the treat I made or bought that is in the fridge. I have stepped out of the shower with shampoo in my hair.

I go to the town to get cash, but find I have forgotten my wallet with my debit card

I don’t lose the continuity of my day. I just forget to be in certain places at certain times. I use the reminder function on my phone a great deal, but sometimes forget that it has alerted me. I need to start using the snooze setting. I prefer using my clock function, it seems more user friendly and plays my ring tone until I turn it off. I go to the town to get cash, but find I have forgotten my wallet with my debit card. It’s good it’s not far to go.

I have sometimes prepared myself to leave the house, my inhalers, my wallet, my phone, only to find my phone still beside my laptop when I return. I feel appalled, but if I need an ambulance there are enough people on my routes to call an ambulance for me.

I use the third step of my stairs to put things I need to remember to take upstairs. My cell phone is there a lot as I can easily hear it from most rooms downstairs, but won’t forget to take it up with me. I write upstairs. However, I still leave necessary things behind and sometimes don’t see them for days. I have two inhalers, and never take both upstairs or downstairs.

Some of you have read how the other friday-i-had-to-be-60-miles-away-to-get-a-device-for-my-lungs. It is called a CoughAssist. It’s like a vacuum cleaner. But for lungs. This week, I stopped using the CoughAssist. Using it for ten days made my chest feel as though there was a log in it. I was struggling to breathe. I can only think that phlegm was drawn up but not enough for me to cough and so caused that “log in my chest” feeling.

On the positive side, I find less to make perfect. I get concerned about less

I have decided that I need to be in hospital. Every day I decide to go and then I see a ripe fig, butterflies, or bump into a friend and go to sit in my garden with a cold drink, enjoying the sunshine☀ and nature. Each day I put it off, I feel a bit better which will make it harder to investigate the “log in my chest”. This morning I remembered I left my glass outside after my friend left. No matter, it will still be there. (Since writing this, I tried to go to hospital. Paramedics came but would not take me to the ER as it is hostile to neurological disease. I have emailed my consultant’s P.A.)

On the positive side, I find less to make perfect. I get concerned about less. I am more placid rather than animated. For me this is good as I have always taken on too much. I don’t worry about my appearance as my clothes all mix and match so it is easy to dress and look good. I need to remind my self to brush my hair.

On Monday morning, when I wakened, I had my first experience of impending doomThis is a symptom of hypoxia. I stayed where I was, in bed, until a friend let herself in. We had a lunch date, so we re-arranged. It was not terrible, but a slight oppression. I dare say that I will have worse episodes.

It is not depression. I have suffered very deep depression, but all this is not triggering depression.

As I write, I have had a call back from the respiratory clinic. That person said I could use the CoughAssist less. That is comforting but as she has never met me and is unaware of the damage to my ribs, I am a bit skeptical. Eventually, I will feel the “log” in my chest again. I asked for the young woman who showed me how to use it to phone when she returns to the clinic.

I am still of sound mind. It may seem that I am suffering dementia, but far from it. My intellect is intact, my knowledge and expertise are still there. I have no problem with what I know.My spelling, however, is sometimes adrift.

Thank you for reading this. If you got this far, please highlight a word in this sentence. Then I will know who may give support to me in the future. Comments are welcome too.

Published in The Lark


Ban All Mirrors

Ban all mirrors from my life

Reflections don’t show me

The violation of disease

Is all I see

People think that this is me

Pushed out from the womb

I can’t tell everyone I meet

It is not so

When I am about or just alone

My body is wired in my brain

Others view is not the same

They don’t see me only disease

Published in The Lark


I have had a shock…

I decided to try to find out how many people have the disease I have. It is not known but less than 1:2000 000.

Thrown up in the results was a book, My Life With Dystonia by Cheri Tannenbaum. Like me she is Ashkenazi Jew. Her dystonia has made her body very stiff, immobile and unable to speak although there has been improvement, I don’t know if this was with the help of drugs. Most importantly, she never had OPEN BRAIN SURGERY.

So the atrophy on my left side might have been totally unnecessary. All the pain it causes me….

I can’t dwell on this. It does me no good. But I am shocked to my core.


A very painful night…

I omitted to say, yesterday, that my poem was published by Poetry Bar. It was written in August.

Yesterday, a girl who was giving me help was incredibly rude to me. It came out of nowhere, and shocked me to the core. My mood flipped into negativity and adrenalin flooded my nervous system.

I managed to counter the negativity. Adrenalin, however, is my worst nightmare. It provokes muscles spasms that are part of the disease that struck me down.

I spent the whole night writhing with agonising muscle tension. It made me very aware of the bruise on the back of my pelvis. My shoulders were tortured, my arms, my legs, and especially my spine. Every muscle was fighting with my body. It was the worst night of my life in years and years.

I am very tired, I ache, and I plan to sleep. I cannot allow this to destroy my well-being any further. I feel so isolated though, as I seem to be the only person in the country living with this disease. This is what scares me. There is no research going on. There is no medicine that helps me.

I put my trust in God. Darkness lasts for a night, but joy comes in the morning.


Who I am

Christine, in years to come you will hear words spoken about you,be asked questions you know not the meaning of, you will be as an exhibit, a fascination, reduced to symptoms of medical interest
Resist the urge to live,let yourself go into the gloomy stupor of death which leads to the light beyond. Ignore the instinct to survive, to grab hold of life, your suffering will be ignored, your pain unknown, you will never find love on this earth
Let all the confusion you will know wash over and away, the years beyond will be too many, with not enough of anything to sustain, not love, not friends, not family, your own daughter will desert you, your sister die in your arms
Dad will love you, mother will poison your life more than disease, let go, when death comes, say yes, and let it be short, don’t live long while you are dying, acquiesce, embrace the light, go to the everlasting arms, don’t exhaust yourself with living
People live in their cocoons, what destroys your life is of no concern, no one will care about you, empty words will fill your ears, enjoy the sunlight and say goodbye while you can speak, everyone you love will disappear, fade away, words have no meaning, life is dust, let go

Published by Hedgehog Press

This is the most autobiographical piece I’ve ever written. My editor invited poems on the theme of who we are. I chose to write to my seven year old self. I was broken up over recent events, I thought about the man I married, my love for him that had water poured over it and yet the support I gave him when a mother’s nightmare happened to us. He took, he took and took. Another relationship, fairly uneventful but he was jealous. He slipped a disc and I nursed him, he took and took. And all the time I was a mother putting my daughter first. Then a boring little man, who asked permission to go to the shop for his lunch stuff, got into my bedroom at three in the morning and molested me while we were talking. While making amends for that he seduced me and began a relationship with me. I started to fall in love but he obeyed his owner. I was fine but he came to visit me, and that was the undoing. I have a folder of emails I thought were from his owner, but apparently are from him. A lot of emails over the last nine months. And then he crushed me. Told me I only wanted a carer. He smashed me and the pieces are many