I nearly died

No regrets! That I realise is my motto. I didn’t choose it, I didn’t force it on myself,I realised this morning that I have accepted everything that happens not exactly with joy but with acceptance of the reality. With acceptance comes the realisation of no regrets.

I can longer sit at a table, cut up my own food, walk my dog. I have rubber handled spoons and forks depending on what I am eating out of a bowl. Sounds awful but it isn’t that’s just me adapting to reality. The same with my sight loss. My eyes have never been very good but but years of heavy steroid intake have scarred my retinas. Of course nobody knew they would do that. When I first started on them I had to carry a card saying so and had to get adrenalin injections at the end of each course of them as they thought it was necessary. Now they just pump people full of them without a second thought. So much for being in at the beginning of treatment. Medicine wanders around in the dark even today. Just a side note those are disability problems not age related problems.

So a brief history. Back in 1975 my problem bowel starts to bleed. Undiagnosed. 1977 asthma finally diagnosed. 1979 my bowel bleeds again, I come close to death due to a bit of incompetence before I am rushed to hospital. A possible diagnosis of ulcerative colitis but one consultant surgeon disagrees. Who knows what was put down in my notes. A GP three years later is treating it briefly with tranquillisers. No internet of course so no opportunity to do much research. I assume this is a one off illness nobody tells me this is it for life. So that disease continues to rule my every waking moment. A mental map of every toilet becomes a way of life. Accidents become normal. By 1983 I am suffering from extreme tiredness. Diagnosed three years later as result of medication and chronic illness. Wrong. It was diabetes. But it will be 1999 before they work that one out. 1989 my bowel is in meltdown, now diagnosed by an expert with UC and told my bowel is now so badly damaged it will never work properly again. He was a lovely lovely   man and all my doubts fade away from 1979 that I might not have it. So as it continues to dominate my life it flares up several times a year. Sometime in the early 1990s after one of my regular colonoscopies I am so tired I can’t get out of bed. Diagnosis : side effect of the sedative and chronic illness.

From 1996 onwards I begin to lose power in my right hand side. Crippled with tiredness which now affects me so much I can’t move till it passes. Usually a couple of hours. Find myself regularly trapped in my car unable to drive because of tiredness. I begin to see things that aren’t there. Things speed across my vision startling me as I hunt for phantom mice. I can no longer walk properly. Everything is an effort. Of course the Drs care, well most of them, by now I have monthly appointments. I have MRIs, see neurologists, one is horrid. Get the feeling  they think I am making up my symptoms. Every year more flare ups. 

Then comes 1999. The subject of my next post.

Old Photo of the Day Australian National Maritime Museum

Dragon Breath Kissing

I write this on an iPad an index finger away from my left eye. I am left handed so I am holding it in my right hand which is the side of my body that is weak because of neuropathy. It gets very heavy and very painful doing it this way. Still I must write I have had the compulsion to write since I was eight years old. Without writing life is strange, something missing. Fortunately my entire working life (ended when I was 47) had allowed me to write and study. Even the last twenty years have been full of writing. I’m not going to list all that I do and have done that would be boring and self serving. However that’s not what I wanted to write about today.

Things that annoy me. These are trivial but I do  object looking for Jazz Music on Amazon Music and finding The Rolling Stones listed. Trivial things like that. Lazy curating. Today The Times annoyed me by publishing a story about the Church of Scotland that talked about priests and showing a clergyman wearing Anglican robes. The Church Of Scotland is Presbyterian and has Ministers. It is the lack of even basic knowledge about institutions that troubles me. The Home Office also appears to employ several idiots. I read a story where they were questioning the authenticity of an immigrant’s claim to be a Christian. Asked to name the Father of Jesus he correctly replied he had no earthly Father, he was rebuked and told that he was wrong and that his Father was Joseph. If Jesus’ Father was Joseph then I have wasted my life following the Son Of God.

Oh that got a bit serious, sorry! It is the lack of basic knowledge that appears in our society that troubles me. On a trivial aside frequently we see on films and TV someone shutting a door and then leaning against to convey relief, shock, fear or another emotion. Have you ever done that? Ever? And why can’t they at least put a few bricks in the obviously empty suitcase? Or coffee in the cup? Or say goodbye when hanging up the telephone? 

I think I am tired and grumpy today because I didn’t sleep well and my body aches.

Ok one last gripe who wants to french kiss first thing in the morning? What about dragon breath? Messed up hair? It never happens! That Is So Annoying. 🧐

Grumpy Augustine x

Black and white photo of camels
Old Photo of the Day

I need to shave my nose!

There are books about puberty, about the menopause and it seems helpful books about everything in life except being male and old. Prove me wrong? Nobody warned me, never mind informed me, that my testicles would be sinking towards my knees and getting in the road all the time, that they could no longer be contained in my underpants but would make  frequent escapes.

I knew I would get weaker than I already was but nobody warned me that a seven year old would become stronger! 

Plugs seem to be glued into sockets these days and removing them is really getting harder. My skin especially the skin on my hands oh dear goodness me. Thin, loose and baggy actually quite repulsive, I’m glad my sight is going. Don’t get me started on hair, it’s bad enough my too big to start with ears are hairy beyond comprehension. I have to shave my ears, and it’s not just my ears there are wiry tufts elsewhere sprouting from fresh areas of horror. Then there is that annoying nose hair and I don’t mean the ones inside I mean the ones growing out of my nose the ones that catch my eye. I need to shave my nose for heaven’s sake.

Maybe now I understand why there are no help books, who wants to know these things in advance? The big question is why? Ok gravity causes things to fall down I get that but what use is hair on my ears and on my nose what practical use is that? Oh and then there is the other problem I am losing height not that I had much in the first place so that hurts in particular. I’m getting smaller, sheesh! So far though I have escaped trousers that fasten just under my nipples I guess that treat is yet to come. What joy awaits. 😉

Augustine x

Old Photo of the Day