Southampton Again…

Yesterday, I went back to Southampton. I chose to go in a car this time. It was a high vehicle and I hurt my ribs as I got in. I could have done with pain relief, as the pain stayed until I went to sleep last night.

I have a superating wound under my ribs on my left side. My ribs hurt as high up as my underarm all day, every day.

I saw a very pleasant physio who showed me how to to use a machine that first forces air into my lungs and then sucks air out. The idea is to remove phlegm, as I am unable to cough.

It was extremely tiring. I asked that any future appointments be earlier in the day. I tire so quickly.

I spent this morning in a state of shock. After going to bed at 7.20pm last night, I woke feeling almost in shock. I strangely couldn’t remember where my stairs are.

I drank lots as I had been dehydrated. I woke twice in the night and drank. I know I would feel better if I took a shower, but I feel too tired.

I feel so trapped in this body. I don’t want to be in it anymore.


Lies, Or, Politeness

My mother died somewhat prematurely a few years ago. Suddenly, I found myself hearing how people had disliked her cooking and her recommendations of, say, roll mops.

For years my mother had used these friends as a weapon against me when I declined her offerings from the deli.

Politeness. The lies they told.

Those friends had provided a whip for my back in their desire to be polite. And short changed my mother by not being honest.

Of course, they had no idea that they were ammunition against me. Which is why their lies were so dangerous and destructive. We never know when something we say will be used. Where, when, or how.

This is why politeness can be so dangerous. If we tell lies in order to not hurt someone’s feelings, we are moral cowards. We can be truthful without being hurtful.

Learning to be honest without causing hurt does not take that much effort. It just takes some tact and self awareness. If we are tactful, we have done our best, discharged our responsibility, and not responsible for someone else being hurt in future.

If we are asked, Do you like this red dress? we can easily say that we prefer the blue one, etc. The same with home cooked food — ‘’Not as much as I enjoyed your blah blah blah’’’.

I recently visited my godmother on the spur of the moment. I always plan it with her. The sun was out after a lot of rain, I felt great, and the idea struck me. I had forgotten to have my cell phone with me.

My godmother was, apparently, pleased to see me. I was careful to watch her face for any hesitation. I saw none. Her son came home for lunch, and when I was alone for a moment, lectured me about how tired she gets. I felt uncomfortable, but soon forgot it as conversation started flowing.

In time I learned that my godmother had complained about my arrival to her son. Her politeness caused me to be hurt by her son. It was, however, my godmother’s dishonesty towards me that hurt most.

So, we need to cut out the lies of politeness. That doesn’t mean we start being rude. It means we express our honesty with tact and love. We say we prefer something else, or that we are tired, we can say that some food is not our taste. There are so many ways we can be truthful without causing hurt or offense.

Published in Know Thyself, Heal Thyself


Learning To Live As A Carbon Dioxide Retainer

It’s a minefield

In May, I was diagnosed a carbon dioxide retainer. I never knew the body could play such tricks and mess with your head. Literally.

We all, I hope, know that we breathe in air containing oxygen, and we exhale carbon dioxide — the oxygen which has nourished every part of our body, limbs, organs, brain. It is the waste product of that process.

The exchange goes on in our lungs. Oxygen in, carbon dioxide out.

I was diagnosed with respiratory problems five years ago. At first, it was mild. It grew worse over time. It has been pretty bad for around eighteen months. Some of you will have read my article about how I lie on my stomach to work. That is the least of my problems. The effects of retaining carbon dioxide are numerous. Including coma.

First, I became aware that I had minuscule “absences” as if I had my brain shut down for a second. It was minute but enough to type the same word twice, or add syllables to words. Occasionally, I would forget the next sentence I wanted to write. This is more and more commonplace now.

It now takes me up to twice as long to write an article. I can be distracted by things that never used to distract me. I am grateful for the editing suite I have on my laptop. English is not my mother tongue, but I have always had a good command of it.

I also wake up with no memory of what lies ahead in my day. A friend arrived earlier, as planned, but I had completely forgotten. This happens almost everyday, so I use my phone to set my reminders. They are not always correct either, as last week I was ready for an NHS conference an hour before it began.

Retaining carbon dioxide also means I have fluid on my kidneys and heart. This means I need the ladies room a lot more some days. I can pretty much cope with that, although it can be annoying. I choose not to let it get to me.

My heart rate has slowed considerably. I’m happy about that as a second condition I have had caused it to be way too fast. It is still fairly fast, but clinicians are less freaked out by it. I don’t know what that means in terms of my overall health. I wonder what the heart rate of a retainer without a secondary condition is. I haven’t researched this part yet.

Earlier this week, a paramedic told me she had attended an old lady in a care home whose blood oxygen was 78%. Most people would be semi- unconscious, but this lady told the paramedic she was just fine, thank you.

When people retain carbon dioxide incrementally, they don’t notice the change. If it is seeming sudden, the changes are like beacons. Obviously, I did not become a retainer overnight, but it was within two months of not being a retainer. That is fairly sudden, in my book, and my life has changed radically.

Being a retainer is nothing to do with age. It is is a symptom of respiratory failure, which can happen at any age if the person has particular disease or other malfunctions.

The reason for my respiratory failure is far too complicated and traumatic to explain here. It is in my poetry. And on my blog.

You will not believe how many errors I corrected before submitting this. I am so grateful to Katie Michaelson for her positivity and affectionate words, to Esteban Giancaterino for our reciprocal admiration and humor, to Princess Carrie Graham for her honesty, and Henya Drescher for her depth of compassion. William J Spirdione cheers my day with his poetry.

I choose to be happy. This year it’s a tougher choice than last year. I have so much to be grateful for.

Published in Know Thyself Heal Thyself


Not great…

I had intended to blog last night, but I got too tired and in too much pain. My breathing has struggled a bit in the somewhat muggy whether we have had.

It’s hard adapting to being a carbon dioxide retainer. It causes me to make so many typos and adding syllables to words, as well as typing the same word twice.

I choose to be happy. I will not be robbed. I have so much to be grateful for. I need to concentrate on those things.


Another Mess in Another Country

The West thinks society should look like theirs
so they topple heads of state, yes they were evil
and the armies invade starting war.

No one sits to plan what the peace should look like
they create mass casualties, even their own
power vacuums appear, black markets.

Then, as if on a whim, the decision to withdraw
no peace was made, women are at risk still
the west just get fed up with the bill

Published in The Lark


The Good News…

My friend Jordi is living in Poole. I am so happy about this. And he’s only a 5 minute walk away. However, he was in a head-on crash on his motor bike. He has bad concussion, a broken nose and other injuries on his right leg and foot.

I caught up with him yesterday. The bruising is still coming out. He is still in shock. I gave him so things for his flat, above a pub.

This has made me happy. I sort of adopted him. We are family.

Today is difficult for breathing. Last night I felt I would suffocate twice. This morning I sounded wheezy but it has gone.

I am in pain on the side of my back. It’s difficult to explain. I have a wound that weeps. It has never hurt like this before.

I am glad I have the support of the hospice. It comforts me.


A Good Ordinary Day

Today has been a good, ordinary day. Although, I napped for almost three hours this morning until just after 1pm. That was magical, and I felt so much better afterwards.

Colin Meek is writing lies about me on Twitter. Let him. I, and many others, know the truth.

Both my lead and my boss were unavailable today. I need to get my NHS email account set up, and for some reason the gremlins are messing around.

Now, the working day is over and the evening is mine.



A Triolet

See these sea-washed smooth shiny stones

They represent the pattern of life

Waves wash in and seep out alone

Ruled by the Moon, hear the soft moan

See these sea-washed smooth shiny stones

Washed up like shells, wrecks, dead bones

See these sea-washed shiny stones

They represent the pattern of life

Published in The Lark


Lack of Oxygen…

The most frequent question doctors have asked me is do I fall asleep after meals or other times. I don’t as my neurological disease won’t permit it. I have noticed tiny slips of concentration, however, and forgetting a thought that I need to continue whatever I am writing.

Yesterday, I almost left a store without paying for my groceries. It was a horrible feeling as a security person approached a reminded me. I don’t want to be thought of as a criminal.

It is hard sometimes in conversation, I forget what I want to say. Overall, these are small things, but each is frustrating.

My so-called editor, CT Meek, tried to leave a message on here last week. He claims he bought the only copy of my poetry collection. He is a liar. I know it was bought in several countries. Regardless, he owes me payment even if only one copy had sold. I don’t think he knows what honesty is, and I regret respecting the person, Rose Drew, who influenced me in connecting with Meek. That certainly does not describe him. He is harsh, unreasonable and has a questionable relationship with honesty, and, therefore, poetry.


Somewhat low…

Since I came back from Southampton, I feel subdued. A bit sad. To go all that way for such a tiny reason has disappointed me so much.

I keep being asked if I fall asleep. No, I don’t because of my neurological disease. It seems that consultants find it hard to look past their specialism.

A friend came over, and we sat by the birch tree. Birds were to and fro. Quite bold.

It was pleasant, but after she left I knew I needed to get some food in the house. But I watered the garden instead.

I don’t fall asleep but my spelling is now rubbish, I forget my next sentence, and I type the same word twice. I catch all of these (I think), but am frightened by it.

I have done very little today. I don’t really want to do anything. I want to sleep and never stop.