The Chronically Disconnected.

When you come out of a place of complete darkness back into the light, its like putting on a pair of glasses. You can see clearly again, perspective pushes through.

I listen to music again and hear lyrics and musicality. I talk to people , communicate again on social media , I can answer the door  and have visitors.

Existing starts again.

I haven’t been trapped in a week of depression I’ve been trapped by my body, my chronic genetic illnesses. Held hostage by a pain that is so severe I cry through the morphine and fentanyl. A heart rate that’s so high I cannot stand up or walk around with out losing my breath and feel like I’m going to pass out. Nausea so strong I cannot eat or take any more medications to try help me.

My heart rate just standing the other day. It didnt much improve.

I spend the time in bed taking injection after injection putting on my Oxygen and waiting for a relief that never seems to comes.

I was getting artisric with my photography of all my needles. I go through a lot on a bad week
I have a big stash of oxygen of all different sizes. It helps so much

I always count to 12am. If I get to 12am I’ve gotten through another day and another one starts again and it will be better (positive thinking ).  When its not I’ll start to count again. When it gets longer than 3 days I will start to despair.

There is only so much a human body can take. You can only be strong for so long and when youre fighting one of the worst pains that’s so relentless, you break. You have to , you get dehydrated, exhausted and emotions take over.
I lose blood volume and get hypovolemia and then start to stay unconscious for hours getting delerious.

That’s usually the call for the nurse to come to give me fluids or to go to hospital to get them in to me at a faster rate.

Getting the nurse to give me a litre of fluids at home helps so much avoiding hospital. I managed to avoid it this time

Today is Sunday this bad turn started last Monday evening. Its one of the longest and worst I’ve had in awhile. I was really at my wits end and I always worry too when I’m not stable especially my heart rate.

There’s no treatment for my condition no cure no help in this country. Just managing my symptoms. But there was no managing of symptoms this week it was out of control. When in the depths of it and that prognosis faces you , youre helpless. Completely helpless and hopeless.

You fight for so many years how can you possibly fight for one , five ?ten ?more. I tell myself no way I cant do it anymore, its not fair, why me?

But I can do it and I do, I always do. Ive survived the worst that’s been thrown at me with this illness so far. Eventually it breaks and not me. The edge of the severity goes the fluids start working so the medication can start traveling around my blood stream again. Then the anti-emetics work and I’ll start to eat again and my energy will come back. Colours starts coming back into my face again.

Reaffirming positive messages to myself

There’s a song by Nina Simone called I ain’t go no/ I got life. She lists out all the things she’s hasn’t got like parents, love,family, shoes,clothes,water. Literally nothing and then starts to list what she has, her fingers her toes her eyes her ears every anatomical detail of her body. To the most uplifting part, the most important things she has that she has freedom and she has life.

I can only imagine what context that song had for Nina in her era from a time of a massive persecution of African Americans and what your body, freedom and your life could mean. It meant everything.

Nina Simones Aint got no I got life

It has a different context for me but when I listen to that song I remind myself that Freedom and life is everything. I still have that and I’m very lucky to and I’ve given life to someone else too, who is my shining star.

So that’s what keeps me fighting. As I said I’m not fighting a mental illness like depression , I’m fighting a physical illness so its a completely different situation. I can use mindfulness and cognitive behavioral techniques to help me daily. I cannot begin to understand how hard a mental health battle is and I won’t insult anyone by pretending too.

But yes I feel depressed on these weeks when things get so bad but as soon as I start to pick up again the darkness lifts and I can think rationally and see things with a bit more hope and clarity. Its easier to be stronger when you are in that frame of mind.

Yes another landscape with a reaffirming message across it 😂

Chronic illnesses don’t allow a lot of time or room for that as you are bombarded with symptoms daily. It can be very hard to build up strength again and again.

But I’ve  still got freedom and most of all I’ve got life (and hopefully a regular heart beat and reduced pain for awhile too 😉 )

Note: all my conditions will be tagged.

3 thoughts on “The Chronically Disconnected.

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