Help me to reduce pain & improve my mental health

Just over 3 yrs ago, my world span out of control, and everything changed for the rest of my life! I went into hospital with, what was thought to be kidney stones, and left in a wheelchair, never to walk again. 

 

 

One dreadful Sat night as I was preparing to go home, I went into the shower, as we thought that it would be easier to have a shower while I was still in hospital, instead of trying to navigate stepping into the bath to have one, once I got home. My legs started to give way, which was strange but as I had been in hospital in so much pain for the previous 3 days, we sort of thought it wasn't anything too horrendous, little did we know!!!!  However, we did inform the ward manager, who urgently contacted the out of hours medical team to come and assess, as it was a new neurological symptom. 

 

There was an extremely lengthy delay, for someone with a new neurology in hospital, it took over 5hrs for a junior Dr to attend, which should have been within a max of 1hr. It was deemed not particularly urgent, even though, I was in excruciating pain, feeling like someone had poured acid over my legs, and I was told that I would get some more investigation the following day. 

 

 

I went for an MRI scan, and as soon as I got back, a Spinal Surgeon came to see me with such urgency, that he didn't really get time to explain what had happened. Luckily, my partner who had some experience with this sort of thing, was able to translate for me. Basically, the discs in my back had bulged, but because I had such narrowing of my spinal column, my discs had bulged into my spinal cord, which was cutting of the blood supply and messages getting to my bladder, bowels and legs. They needed to urgently operate, but time was running out, as there had been such a delay. I was petrified, I started to call my family, before i went into surgery, I was trying to keep it together for my daughters, and tried to give them reassurance, but it was extremely difficult, as I hadn't even had time to comprehend the enormity of the situation. 

 

 

When I finally came out of surgery and was able to see my partner and family again, I could see something in their eyes, something I could tell, they didn't want to tell me. The next day in ward round, my absolutely fear had been realised, I was completely paralysed from the waist down, there was very little chance that I would regain any movement from the waist down, including my bladder and bowels. I went to a Specialised Spinal Rehab Unit in Salisbury for 10months and sure enough I never regain any movement. What I hadn't realised and I wasn't prepared for is the spasms and immense pain, that I have had to endure every day since. This is neuropathic pain, which is like extremely bad burning sensation, and pain similar to cramp, below my paralysed level. This is caused by damage to my nervous system, there isn't a cure, but there are medications and things that can help to reduce the pain that I feel. 

 

 

So, where am I today? My bladder and bowels still don't function normally, i take  46 pills a day to help reduce the pain and spasms. However, my pain is still at least 7-8 out of 10 of the pain scale, each and every day. I have tried to reduce my medication, however I soon realise, how much my meds actually do work. I currently spend about 20hrs a day in bed because the pain increases the longer I'm sat in my wheelchair or on the sofa, so I have to go back to bed to try and reduce the pressure. I have carers in up to 3 times a day, and once a day they do passive stretches, which helps with tone management, spasms and pain in my legs. I'm also very fortunate that I have been able to find an amazing Sports Therapist to massage my legs once a week, but this is something i have had to fund myself.

 

 

While I was at the Specialist Spinal Unit, I was able to use a passive exercise bike and standing frame, which helped enormously, to reduce the spasms, tone and pain. When I frequently combined using a standing frame and passive bike, my pain levels reduced to 3 out of 10.I have been able to obtain a passive exercise bike, which cost £2870.00, aa we were able to spread this cost over a period of time to pay this off.  We have exhausted all avenues of getting a standing frame, the company who we purchased the passive bike can not do the same arrangement with a standing frame. We have looked into many ways of getting access to a standing frame and also ways of sourcing some funding, but at a cost of approx. £5.500 we haven't been very successful. When I frequently combined using a standing frame and passive bike, my pain levels reduced to 3 out of 10.   

 

 

After coming to many dead ends and becoming extremely frustrated, some close friends and family, suggested doing this GoFundMe page. Having worked so hard before this happened to provide for my family, it is very very difficult and demoralising to ask for help. However, we have hit so many obstacles and exhausted all known avenues, it is a last resort. My pains are at a point that the impact on . I'm not expecting to raise the whole amount on here however any help is hopefully a step nearer to me leading a better life with alot less pain and medication.

 

Thanks again for taking the time to read my story and thankyou in advance for any contribution you choose to donate!