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Hello everyone, I wanted to do a post to explain all the wonderful problems I face, remember I am not unique, I am not the worst off. I am just a disabled person dealing with a world that I don't understand or fit into.
I'll pin this.
I have Physical diagnosed illness so lets deal with them first.
In 2018, 7 days after my wife died of cancer, I was diagnosed with bowel cancer, I went into hospital over Christmas and had 40-44% of my upper intestines removed and 27 lymph-nodes removed.
The removal of that much of your gastric system has long term effects on your body.
My body absorbs 40-60% less calories and electrolytes than an average male of my age, but the real danger is abnormally low electrolyte absorption.
This can kill me quicker than anything else, for example even though I eat a lot of food with potassium in and take potassium supplements, my bodies potassium levels are always in the danger zone. Normal is 3.5+ mine is usually 2.6-3.4.
Low levels of potassium will kill you, the main muscles of your body rely on it, your heart can stop, your diaphragm can stop and thus you can't breath, you die.
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A special form of GERD (reflux) happens due to the shortening of the gastric system, food leaves your stomach slower and thus your body adds more acid, thinking that will help the food go faster, SPOILER it doesn't, instead that acid builds up, weakens the muscle between stomach and throat. I have to be very careful what I eat and I have to stay upright for 6 hours after a meal or acid can melt my throat and go into my lungs.
But Jason why don't you take Antacids or Gaviscon, bare with me here, reducing or lowering effectiveness of stomach acid means less nutrition and electrolytes will be absorbed and ..... potassium goes down even faster.
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Medication I was on caused Diabetes type 2 also damaged my kidneys and liver and so now I also have to live on low glycaemic (food that doesn't spike blood sugar) food which is more expensive and harder to balance the above extra nutrition I need to eat.
So those are the physical, official illness that worry my doctors a lot, (I end up having more blood tests and heart tests per year than most people due to the chance of death).
Now lets look at my Officially diagnosed mental issues.
All of these were diagnosed by specialists in that field, not a general practitioner.
Autistic Spectrum disorder with technology affinity. (I have like a 12 page document which explains it all). it took 3 years to get a diagnosis.
Bipolar type 2, I spend most of my time deeply depressed its my natural state, I spike up into hyperness.
ADHD
PTSD, something about having my surgery in the same hospital my wife had died 4 weeks before and a reaction to the pain medications means, I relive the last 30 minutes of my Wife's death. I don't sleep on beds anymore, i sleep on a futon.
Main challenges trying to cope with a brain that doesn't connect with reality and can drift away, without coping strategies A LOT of coping strategies I can easily disconnect from the world, this can be as simple as just sitting down where I am and 6-12 hours going away
To the dangerous part where if outside in the world and not grounded by safe space, walking stick, holding someone hands, holding on to a fence or wall, I can go catatonic, completely freeze up and fall to the ground.
it isn't always 100% sometimes I just loose the ability to speak, or react.
I can after much training walk outside my front gate and to next door's fence on either side, if I prepare.
How do I cope with this.
Thousands of coping strategies.
Noise cancelling headphones because too much sound overwhelms me, too quiet overwhelms me.
Mobility scooter, my mobile safe space.
VR, is very special for people with mental health challenges, something about wearing a headset helps your brain exist in a different feeling.
Games, to most people these are hobby, to me I schedule time to play each day, to give my brain a different landscape to exist in. I don't automatically think "hey I want to play a game" no I have to schedule it and poke myself in that direction.
electronic lists eating, drinking, exercising, listening to audio books, washing face, brushing teeth and a hundred other simple tasks I need to prompt myself to do each day.
Backups for every single coping strategy, if you phone or pc dies it's an inconvenience, if mine fails I could end up in hospital in a Psychiatric Intensive care ward.
Having a dog helps a lot!
Brain adapts, issues get worse, coping strategies have to adapt.
For example 4 months ago when diagnosed with Diabetes type 2 it removed all those fun coping strategies based around food, those feel goods you get for eating your favourite pizza or snack well for me they are a quantifiable positive boost to my depression and downs, 4 months ago all of that had to stop and I had to scramble to find replacements before I had a crisis event.
No pizza doesn't cure depression :D but all those little positive things in your life for me they are a battleground.
Why am I not on medication, well sadly they tried for multiple issues I face and I became suicidal and had really bad side effects.
So we stick to technology, I do have a crisis number to ring if I see the signs but upto now its a success story it keeps me functional, im winning the battle.
A 20 minute ride on the mobility scooter around a local park is a massive boost to my brain.
If you have any questions please feel free to ask on this post.
@thesilentgirl6 @MeganRo73185925 @Dr_Bekka_UK #MentalHealthMatters #ADHD #PTSD #autismawareness
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