I had a painful and shitty weekend
And I am sharing it with you.
Why? Before I acquired a spinal cord injury in 2009, I thought people in wheelchairs in general, had only one problem. They couldn’t walk. I knew little and quickly learned there are multiple issues.
I want to share a few of the issues that occurred to be on the weekend. The goal is to increase understanding of people who don’t know what it is like living with an SCI.
Warning: If you want to know exactly what happened this weekend, please read on. Those with weak stomachs may want to skip this blog.
Saturday – a painful day
My morning routine of the toilet, shower, getting dry and dressed occurs every 2nd day. The main reason is the time it takes – an average of 2.5-2.75 hours. I can’t spare the time to do that every day and every two days is just right for my bowels.
Saturday was the day I didn’t need to go to the toilet and shower. As I can only sit up in my wheelchairs for a limited time each day before back pain gets me back to bed, I spend the morning
- eating my breakfast (prepared the night before)
- taking my drugs
- getting dressed
- plenty of work on my computer (writing my memoir, accounts, organising my week etc.)
- entertainment (Xbox and apple tv, with surround sound and large tv)
Saturday midday – starting to feel bad
Around midday, I was feeling bad. Back pain was higher than usual, and I felt exhausted. My SCI causes muscle spasms in my abdomen, each time I lay down or up, or put shoes on, or pick up something from the ground. Typically it is just a gentle vibration of my six-pack (I have one of these under my fat). Today it was an excellent workout for the muscles, causing discomfort.
How do spasms cause discomfort in the abdomen, if you have no sensation below the chest? A good question. Although I cannot use the abdomen muscles, when they contract, they are strong and put pressure on internal organs. I can feel the results of the squeezing above the level of my chest.
Saturday 2pm – getting out of bed
I didn’t want to get out of bed due to the pain and spasms, but it is better to try. The spasms were getting more painful, as I bend over to put my socks on, then undies, pants and shoes. It was exhausting too. My back pain was increasing.
After getting into my wheelchair, I attempted to pat Spartacus. As I leaned to my left, the spasms commenced, and they were getting worse, with increased pain.
I tried to get to the shops and turned back after a minute.
I couldn’t handle the journey and went home. Spasms and the associated pain increased, as well as the back pain. And I returned to bed around 5 pm, after only a few hours in the chair.
Saturday evening – My support for Euthanasia increases
As as a Christian, who experiences chronic pain, I support the right to die, if a person has too much pain (and all avenues to reduce pain have been exhausted).
My carers arrive around 815pm each night to help me to bed. Usually, I am talkative, or in the pool, or out and about, and I come home. Tonight I was in a bad mood due to the pain. I also thought something serious might be going on in my body, as spasms are a way of communication.
I spoke little and shared about my pain, and they helped me get ready for bed, and wished me well. Being male, I don’t particularly appreciate sharing my bad times, but I did place it on Facebook, and a few people wished me the best. My partner, Madie, asked if I need her to come, and she offered to miss work on Sunday too. I just wanted to rest and had an early night.
Saturday night – I discover the reason for the pain
As I was taking my smorgasbord of drugs, I discovered that the reason for the pain and the spasms.
I hadn’t taken all of my morning medications. It happens now and then. The missing medicines that caused the issues were
- Kapanol – a variant of an opiate that helps reduce back pain until the evening
- Lyrica – it treats nerve pain, as nerves in my back are damaged
- Baclofen – it reduces muscle spasms
Idiot! If there were a worldwide shortage of Lyrica (aka Pregabalin), I wouldn’t be able to cope with the pain.
I consumed my nightly medication, as well as the morning medication (half of the Baclofen, 1/3rd of the Lyrica, and the full Kapanol dose). It took some time for my body to settle down, and I didn’t fall asleep until about 2 am.
Sunday morning – all ok until the toilet
I didn’t wake up until about 815am, and I felt better, and the pain and spasms were under control. After jumping onto the shower chair, I farted a few times and pushed faster (to avoid the smell and to position my bum over the toilet before anything fell out).
The bowel movements progressed ok, and I thought it would be a quick time.
Sunday morning and things are shitty
However, the bowel movements became very loose, and I couldn’t believe how much was coming out.
I use latex gloves, lubrication and gentle finger stimulation to get the job done. I spent over three hours on the toilet, consuming 25 gloves, four sachets of lubricant, and it made my bathroom area smelly and a mess.
I was careful with my index finger, as I didn’t want to cause bleeding, but I had to be sure there was nothing left in my back passage. The last ten gloves are for insertion by the finger to clean up the mess there. I didn’t want to commence showering until I was sure that I could get dressed and not have an accident.
Sunday afternoon toilet cleanup
By now, you should understand that things are messy. Taking the glove off needs to be carefully done. Otherwise, you flick excrement on the walls, floor, me or the cat. I managed to get all the gloves into the bin, but the toilet bowl was a mess, and there were 30 or dark brown drops on the tiled floor.
I wrapped up the waste in 3 plastic bags and cleaned the toilet. The toilet brush is used to scrub the brown dots, and by then, the shower chair wheels were causing marks on the tiles. I grabbed my long pick up stick and sacrificed a face washer. I sprayed disinfectant from a spray bottle onto the floor, and mopped the floor with the face washer, starting at the door and heading towards the shower.
Sunday afternoon shower
By now, it was afternoon, and I had a shower and washed my bottom a few extra times. And got back to bed, fully dried and dressed. The whole process took around 4.5 hours, and I was tired and hungry.
I rested in bed for a while and finally got back in my powered chair around 3:45 pm for a little retail therapy.
The day finished ok, and I picked a few tomatoes growing in my pool area and added them to a bread roll with excellent cheese and pepper.
That was my painful and shitty weekend.
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