***UPDATE ***

thank you for all your support and generosity I now can get up and down my stairs much more safely, I couldn’t have done it without each of you, I will always be so grateful to you all and and other news I am now out of hospital following my bilateral pulmonary embolism, I will be have to even more careful not to hurt myself, I have considered raising some more to pay for all the bubble wrap that would be needed as even in an empty room I have the special ability to hurt myself!

Again though thank you so very much each and every one of you. love you all

(I’m already thinking of ways to pimp my ride, might have to make it look like I’m riding broomstick! Other suggestions are always very welcome though ; ) )

Hi, never in my wildest dreams did I think I would ever need to resort to doing this.

let me take you back to the start 2019. I’ve always had a dodgy left knee and one night carelessly started walking up the stairs. Remember I’d forgotten something turned round next thing. I know I’m on the floor after bumping down each step breaking my ankle Hospital more worried about that than anything else even though I complained how painful my whole sciatic lower back buttocks area was anyway carried on and then April 2020 The start of lockdown I was having physio for my knee and what was worse for me at that time was my left hip terrible excruciating pain through it to my back my lower back, i phoned the doctors but because of Covid they weren’t seeing people I was crying because of the pain and the doctor asked where I was I told her I was at work and her response was ‘well if you’re well enough to work’

I carried on working through the next few months until I could take it no longer and went to an emergency clinic in Milton Keynes where the very nice doctor told me I needed to have an MRI and that I should call my doctor Surgery and tell him that so I did, had a scan done in November and results in December. I saw a specialist nurse who gave me the results. it wasn’t good news but she promised she was putting my referral to the neurologist team straight through and that I would hear from them in the New Year so I waited and got a letter to say that our referral have been passed across and if I hadn’t heard from them by the 17th of January then I would be able to give them a call to chase it up, 17th of January came still no word from them so I called only to be told we are busy because of Covid, you just have to wait. They’ve not even looked at your file yet. I had also started at this point finding it harder to urinate or even control the flow the speed and anything about it and when I thought i needed to go I had no time but then I only a tiny bit would come out, also affected my bowels and I developed partial saddle numbness. Desperately through I called my doctor surgery again begging for help and this time I got a different Doctor Who asked different questions the right questions and before I know it encouraged me to get down to a&e with suspected Cauda Equina syndrome. Something I had never heard of before, I was examined had a new MRI done poked, prodded and pricked and had so many things, embarrassing things done and then just like that I was sent Home. I didn’t know what to do later that Week I’ve got a call from a spinal clinic asking me to attend urgently, apparently it showed in my MRI that yes my spinal cord was being compressed and I was retaining over 900 mil of urine. I’d go to the toilet and come back. I have 700 still in there that’s when they blue lighted me to Addenbrookes Hospital where I went decompression surgery laminectomy and discectomy of my L5/S1, sciatica before this was not even in that ballpark and the pain I felt down my leg and into my foot was unbearable, and the lack of proper follow-up care was worse. I had to have a catheter, I was unable to do self catheterisation I was still in so much pain in April 2022. I went under the same surgery again but this time for my L4/L5 again it was classed as failed back surgery had numerous injections and now I have a supra pubic catheter which of course brings along a whole host of problems.

This whole process has affected my mental health and I’ve been to some very dark places. I don’t leave the house except for hospital or doctor appointments. I have my electric wheelchair which I can use weather permitting but my biggest struggle is a daily necessity, getting up and down our stairs. I need a stair lift.

I have had all the assessments from OHT and the council agree I need that along with a wet room and ramp to the front of my house to make getting in and out easier. I need a new better electric chair but I don’t care about those issues. we don’t have anything spare after bill’s mortgage and paying to get our son through university.

im not wanting anything fancy, just something that will take me straight up and straight down as needed.

i have seen some companies offer reconditioned chairs which they will come and install all for around £500 as we have a straight staircase.

i know times are tough for everyone at the moment so anything, and I mean any amount no matter how small you may be able to offer would be so greatly appreciated.

i also hope that this can spread some awareness about cauda equina syndrome, yes it’s very rare but if you are experiencing lower back pain, hip pain, running down your legs into your feet yes it’s likely siatica but the moment you notice any issues bladder and/or bowel wise no matter how embarrassing it may feel to talk about or any numbness around your’saddle’ area, if you can’t feel yourself wipe after going to the toilet or you experience any foot drop these are red flags and the sooner they are identified and managed correctly the better your chances that you can go back to normal, if left to long the spinal cord will be crushed to the point of no chance of recovery and you can end up paralysed.

as mentioned earlier it’s not just the condition it’s the side effects like having to be catheterised, then spasms and pain none stop from that, I ended up with sepsis earlier in the year as again I wasn’t listened to for weeks by the drs.

and the medications that you need to even function come with their own lovely side effects.

I have this year not also been diagnosed with fibromyalgia but also ME/CFS which has left me even more unsteady on my feet, not long ago I had 4 falls in the space of 2 weeks ending up in hospital as I managed to land on my face, it caused slurring to the point they were worried I’d had a stroke, thankfully I hadn’t but my all my senses were effected, severe brain fog and anxiety…. These are just a few.

so if I haven’t reached, spoken to you, or commented on your feed it’s not that I don’t want to, it’s more that I don’t have the energy needed, it has left me with a very small group of loved ones, all family members who knew what I’ve been dealing with, but I have due to pride and stubbornness held a lot of it back from everyone else. Not any more. As my mum says ‘it is what it is’

next step is hopefully going to be a spinal cord stimulator, but I know nothing happens quickly on the nhs so watch this space.