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Having Respiratory Failure

It leads to death

Photo by Sincerely Media on Unsplash

About seven years ago I was diagnosed with an asthma-like condition. It was treated with Salbutamol (ventolin). This was not really effective but my problem was not serious at that time. I would get short of breath after walking or housework.

About four years ago, a friend lent me his pink inhaler Fostair. It was far more efficacious so I asked for Salbutamol to be removed from my prescription. Fostair was much better.

Some time after this I began needing paramedics to make interventions due to seemingly asthma attacks — when the respiratory system tightens and air cannot get in. These were fairly few but mainly in damp, cold, weather. This year I have needed more interventions than I can count. Mainly because the consultant I got was useless.

All these vapors going through my mouth and throat mean I must drink after using my inhalers and after nebulizing by paramedics.

Now, I use so many inhalers that my sense of taste is almost gone. In May last year, I was diagnosed as a carbon dioxide retainer. It means I do not exhale all the carbon dioxide my body converts from oxygen. It is very dangerous. It can cause coma or even death. I cannot be given oxygen except briefly. It will knock out my breathing as now my respiration is driven by CO2. I carry a huge medical alert card.

I retain not just carbon dioxide but fluids. There is fluid on my heart and other organs. My blood oxygen hovers around 90, but may drop to 83 or be a high as 97. These are percentages. A healthy person’s blood oxygen is 100.

I have started buying sour sweets. The kind that are chewy and jelly like. They make my mouth water and I can taste them. Brushing my teeth with toothpaste does not help, so I use salt, or a flavorful leaf on my toothbrush.

I eat honey by the spoonful. It soothes my throat which is always sore. Honey soothes the skin of my throat as well as my mouth.

I am now living with hypoxia as a result of respiratory failure — shortage of oxygen to the brain. It means my home needs prompts to remind me to do things and I keep my everyday things in the same place — my glasses, for example. Everything is easily placed so that I see what I need as I leave my back door. I’m grateful that my home is laid out to make this easy. I still forget things though.

I get confused. Writing here means words typed twice and similar. My keyboard bewilders me. I do, however, manage to shop and go to the town without mishap, except the occasional forgetting to go somewhere.

All this means I can make mistakes without realizing. It also means I could go into a coma or die at anytime. I am very vulnerable. I am 5 on the New Scale, and sometimes 6 but I refuse to go hospital unless an infection is suspected. The New Scale is what paramedics use to determine whether a person needs to go to hospital. Six is when they insist you must go. I have signed disclaimers countless times which say death is imminent.

The New Scale does not take into account that I have a neurological disease. It causes my resting heart rate to be very high. In the last two months my pulse has slowed to 83 due to the extra work it has to do. It used to be 113. Some paramedics freak out and phone clinicians and doctors. Others realize my normal is unique to me.

I keep antibiotics and steroids in my home. I can detect an infection. It’s called a “rescue pack”.

Three weeks ago, I was rushed to hospital with a respiratory obstruction. The trauma doctor was truly great. She recommended a drug that breaks down secretions in the lungs. Now I have reduced three a day to one a day as I was suffocating. My neurological disease prevents my ability to cough. My body is struggling to cope with the excess fluid from carbon dioxide.

I took my laptop with me, as I can’t relax in the ER.

Darius

 is someone who I love to read and we have talked a little about my health. 

Ali

 is someone I am close to and she is unwell too. We all have lives unknown to other Medium members. 

Lu Skerdoo

 is great friend to me here. I appreciate 

Julie KingGood

 and 

Patricia Hodge

 who have both recommended my articles.

There are many of you I appreciate and feel a bond with… 

Susan Wheelock

, who feels like a friend, 

Mulan

Sofia Chen

Henya Drescher

J.R. Spiers

-he is a prose poem, 

Arbab Z.

Mike Knittel

,the only satirist I have found on here, 

Kim Zuch

Suma Narayan

Ellie Railton

, and so many more. Forgive me if you aren’t mentioned. My memory is faulty. 

David Perlmutter

E. Ardincaple

, my useful friend. 

Michelle Scorziello

 I love to read and 

Shin Jie Yong

 is a friend.

I am not old. This is a disease of any age, but my neurological disease triggered it. Pressure on my spine caused the first shortness of breath.

Thank you for reading this far…

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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

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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

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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.

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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.

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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