Today I used a shower chair

I had a shower and sat on a chair

Might sound like a fact that I’m noting

It’s actually a sentence filled with sadness

Not because of pride- because my body’s shutting down and I can’t do a damn thing about it.

In the past, Even with the worst case of the flu- I could shower. I could wash my hair, dry off and get dressed, even if it was back into my pjs.

My showers have reduced- today I pushed to shower because I could smell my unwashed body odour.

Showers make me nervous. I know how much energy I need to use and how many possible breathing episodes I’m going to have. Even undressing is hard.

I sat under the hot water, my body in aching pain. My hair tangled, knotty and straw like.

My legs and feet looking purple.

The strength in my legs to an all time low.

Shampooing my hair, took time. Energy and time.

Then the conditioner.

I asked my son to check on me in 5 minute intervals. That fizzled out eventually, my shower took an hour.

Once I showered, I sat in my towel for another hour. Watching Netflix and trying to distract myself from the cold breeze hitting my back because I couldn’t position the towel over it properly without having a breathing episode.

The smell of the towel was strong, my body is so sensitive to smell.

I’ve become afraid of the breathing attacks. The attacks come on with movement. I gasp and pant and my body scampers looking for oxygen desperately. While that’s happening, my mouth becomes dry, my hearing echos and my body begins tingling and then flushed with heat with the loss of oxygen. Vision blurs and my brain begins panicking because it knows how long these episodes use to take and how long they take now.

As I’m trapped in this state, I pray to distract myself from the fear.

Things have progressed. The body reminds me daily.

My eyes sting, I need more sleep, my chest is hot and I’m barely walking.

My hunger is non existent and I have no energy to do the things I once enjoyed to pass time with.

Diamond art- too much work

Reading- my eyes are sore

Knitting- my arms are sore

Pinterest- makes me realise how much energy I don’t have and then I’m sad

Back to watching tv and laying still.

So, here I am. It’s New Years. I’m grateful I’ve made it to now.

Still working on accepting the shower chair situation.

To all the spoonies, the people waiting on the transplant list, the chronically ill and the ones I forgot to mention… You’re not alone.