On the 1st of January this year I was taken into hospital as I lost the use/feeling of my legs and wasn’t able to empty my bladder or bowels. I called NHS 111 for some advice and they sent an ambulance. I was admitted to the ward, with suspected Caude Equina Syndrome, on complete bed rest, having to lay completely flat, to have an MRI scan the next day.
By lunch time, 2nd January I was taken for my MRI and within half hour of the scan I was being rushed to theatre for emergency spinal surgery. Everything happened so quick. I was put in a gown, had a cannula put in, and endured several tests (such as, ECG, blood test etc) all while having to listen to the surgeon telling me about the possible risks and complications related to the operation I was about to have.
I was told the operation was “to prevent further damage and most likely will never fix your legs and this is for life.” This is because the Doctors and hospitals had not been listening and not investigating.
A disk had ruptured in my spin compressing my spinal cord. Causing damage to my nerves leading to loss of feeling and use of my legs, bladder and bowel. I was diagnosed with Cauda Equina Syndrome. A rare condition that has left me paralysed from the waist down.
From 1st January to 1st February, I was stuck in the hospital trying to recover. I had been referred to neurological rehabilitation but my referral was denied based on the fact that there was nothing more they can do for me.
I was discharged where I was told that the paramedics could get me into my home, but that I would have to wait for my wheelchair and ramps to be put in for easy access to my home.
It’s now the end of May, and I am still housebound, still waiting for an electric wheelchair from Wheelchair Services, and still waiting for the council to agree to home adaptions, including the ramps I’ll need for the wheelchair. That’s 4 months housebound, and 5 months if you include my month stay in hospital.
I suffer with Bipolar and Anxiety, and my mental health has deteriorated so much during these past few months. Not only am I living at home stuck facing the same four walls, but I am having to adapt to live with carers twice a day and the inability to use my legs. Missing time with family and friends, events and attending college. My friends and family occasionally visit me but it’s quite a distance for them to travel, so I am missing the social interaction and feeling more and more isolated, watching the clock, and everyone being able to get on with their lives.
I set this page up as although I was to receive a wheelchair on the NHS it wasn’t very practical, it didn’t come apart or fold up so I wasn’t able to go in a car or out with friends and family. It was very bulky and just about fit on a bus.
I received a wheelchair from the NHS on Saturday 22nd June 2019. I had managed to break the hanger of the footplate twice in two days. I spoke to the office yesterday as i had broken the hanger of the footplate again and was also getting pressure sores because the seating wasnt right. They said someone would contact me within the week to come look at it. They turned up today (25/06/19) with no notice and said they had come to look at the chair and would have to take it away for investigation as i had broke the hanger for the footplate twice in two days. When she lady that did the assessment came in she said that she didnt know i could 'walk' inside and that they only fund chairs for people who need them inside and outside and that one of the criteria is that you must be able to move it inside. She then said i wouldnt be eligible so i wont be getting the chair back and i need to save to get one myself. I will recieve a formal letter saying the outcome. What i dont understand is that i was using the frame in the hospital so the original referal would of stated this and also they contacted physio, OT and the hospital so they would of been aware of the situation. The frame I can only use to put my arms on and push my way forward and my legs would follow. I have tried normal zimmer frames both in the hospital and recently with physio of which I couldn’t use as i cannot lift my legs.
I am doing my best to save as much as I can, and selling a lot of my things to also try to raise funds. I feel embarrassed to ask for your help, I just know that with some support, I may be able to reach my goal quicker, and be able to spend time with everyone sooner, rather than missing more months of my life go by.
All I ask is that you could please donate to my cause, and help me out. Any small amount will still help massively. And if you’re unable to donate, please may I ask you to share the page so my story gets noticed.
I have gone from being able to walk, to not being able to feel and use my legs. And the scary thing is, it could happen to anyone. We need to raise awareness of Cauda Equina.
Thank you so much for taking the time to read my story, and I am incredibly grateful and thank you in advance for all the help and support from you all. Becky x
This article was posted online. It is important to spread awareness for people to access treatment quickly and prevent severe lasting damage.