Hi, I'm sonk1968! Looking for others with a Spinal Cord Injury to chat

sonk1968

Hi I'm Sonja a 54 year old mum to my daughter who is 18 in 2025.

I had a urostomy fitted in 2000 due to bladder cancer.Last year I had a blockage in my left kidney which needed resctioning the bowel and making a new stoma.

Surgery was successful and was due home after 6 days in hospital.

When they removed the pain epidural it all went wrong, and I had a Catastrophic Bleed in the central spinal cord.

So, a week to the day on the first op I was in Neuro surgery dealing with t12- L1 bleed .

Since then it's been a very weird , sereal year.With learning so many new ways to understand the functionality of my body.Mind blowing!.

I'm now at home stuck in bed 85% of the time. Due to blood pressure issues when sitting upright.

I keep myself busy, sewing, crochet, reading. But there are so many questions left unanswered. Why can I move my legs but not walk yet? Why do I feel disconnected from my legs?

Does that ever go away? The pain is unbearable, does that ever go away?

Like a newborn baby, it's all a new environment, but one you know you have to embrace, to get on with Life!.

I would love to message people with similar SCI and chat about their experiences in the first year.

Speak soon

Your SCI friend

Sonja X

Rachel_Scope

Hi @sonk1968 and welcome to the community 😊

I love your positive attitude, it's admirable. What have you been sewing or crocheting recently? I really want to get back into sewing and need some inspiration!

I found this organisation Back Up Trust which has advice and support for those with a SCI. The link takes you straight to info about their service that connects you with someone else with a SCI who can understand your issues. Hope it helps 😊