Chronic Illness, Disability and Me

I’ve been thinking about writing this post for a long time now so I thought it was about time I finally got around to writing it. It’s taken a long time to pluck up the courage to write this post because it’s extremely personal to me and I’ve been worried about how people may react to it but that’s no way to live…so here goes! This is my story of chronic illness & disability.

After spending 18 months working in a job I absolutely loathed you can imagine how elated I was when I finally got offered another job. I’d been working as a care assistant in a dementia care home on minimum wage (the minimum wage was £6 per hour at the time) working 12 hour night shifts. The job itself was extremely challenging as you can imagine. The large majority of the patients had dementia which meant they were very confused so would often lash out. I was punched, kicked, scratched and spat at countless times. It didn’t help that most of my colleagues and manager were foreign so they would often speak in their own language leaving me feeling alone & like an outsider. You get the picture…I was extremely glad to be leaving. I was offered a job as a health care assistant at my local hospital in EAU (emergency admissions department-twinned with A&E). I thought this was going to be the start of a new life…and it was but never in the way I imagined!

I started working in the busy department and was eager to learn. We saw a wide variety of patients suffering from different medical conditions including: overdose, kidney failure, heart attacks, cancer and respiratory problems amongst many other things.

The 1st October 2012 will stick in my memory for the rest of my life as that day changed my life forever. It started as a normal day. I was working the late shift at the hospital and we were very short staffed so I was even busier than usual. Half way through my shift I had to assist one of the male patients to the toilet. He’d been on the ward for a week so I’d got to know him and he was laughing & joking all the way. On the way back I was assisting him back to his bed when suddenly he went quiet and jolted upright. He fell backwards onto me. As soon as it happened I felt & heard a crunch in my back & legs. I cried out & another nurse came to help me and assist the patient back to bed. I was in a lot of pain and my whole body felt weak. I started feeling nauseous too so I asked the sister in charge if I could go home but she refused. The sister said we were too short staffed already so I would not be allowed to go home early. She said I would probably feel better at the end of my shift but this was not the case at all. When it got to home time the pain had only got worse, I was feeling even more nauseous and I was finding it much harder to walk. I collapsed on the sofa as soon as I got home but when I tried to get up to go to bed I found that my legs were too weak to stand up and the pain was so excruciating that I was crying & screaming in pain. I attempted to go to A&E but I couldn’t walk far enough. I had to roll onto the floor and crawl to bed that night but I didn’t sleep because the pain was the worst I’d ever experienced. I knew something really bad had happened but I didn’t know what so the next morning I phoned in sick & called my GP. My doctor wanted me to see him but as I couldn’t get there I got a home visit a couple of days later. I was completely bed ridden. I needed assistance to go to the toilet & I was having to have bed baths.

 When the doctor came to see me he said he thought I might have a disc protrusion (also known as a slipped disc) but I’d need an MRI scan to confirm this.So almost a month later I had an MRI scan and it did indeed confirm that I had a disc protrusion on my left side but my disc had also trapped some nerves going down into my left leg so this caused Sciatica. 

My parents had to help me out a lot as my partner at the time (now my ex) was useless. He was very selfish and uncaring. His behaviour was the final nail in the coffin and it eventually caused us to break up which was definitely for the best! The breakup ended up being a bit messy but it still worked out for the best. I couldn’t be with such an uncaring heartless d*ckhead anymore so I moved back in with my parents.

It took a long time for anything to really happen but eventually I was referred to a clinic. This clinic was hopefully going to refer me for some treatment but unfortunately this didn’t happen. The guy I saw was completely uninterested in helping me. He said just leave it a while and it should get better on its own. My back & legs didn’t get better on their own so I spent a year living in agony being unable to work or go out. I eventually got to the stage where I could hobble with a crutch to the loo by myself or get to the sofa but that was it. After a year of suffering I was eventually given an injection in my back called an epidural to help with the pain. The injection worked after a few days. The pain got better & I started walking again with help from a physiotherapist.

I was making progress and I started looking for another job as I couldn’t go back to the hospital as they had dismissed me on grounds of ill health. Jobs were hard to come by and even when I did find something suitable I would get turned down because of my medical history & the fact that I still wasn’t in “perfect” health.

I went on to meet my current partner, Jon who is such a lovely guy & helped me to find a new job. He took me to my interview with a small local media marketing company and to my surprise I got the job! I was offered the position of receptionist and I took it. I started off on part-time hours then eventually went full-time once I was back to full health. Everything seemed to be going well, I started doing some work in accounts and got a small pay rise so that I was no longer on minimum wage.

On the morning of the 2nd March 2015, I woke up to the sound of my alarm as usual but I was horrified to discover that my legs weren’t working and I was in horrendous pain once again. I called my GP again and after months of tests and scans it was confirmed that it was my disc and nerves playing up again. My health condition wasn’t properly treated so unfortunately my illness came back. I went back to not being able to walk properly, had to hobble using a crutch again and had to give up my job again.

After repeatedly pleading with people to help me I was finally referred for an operation. The operation on my back took place in early November 2015. The surgeon promised I would walk out of the surgery and be back to normal. However things didn’t go as planned. The surgeon couldn’t do what he needed to do so I was still in the same position as before. I left the hospital in a wheelchair. A sure sign that the surgery had not gone well. After the operation I was back to not being able to walk, go to the toilet unaided, get upstairs, sit down on my own or go out. Every single thing I did I need assistance. I couldn’t even lie down without help. Every movement my body made was agony. The pain is so horrific that no words can really describe it.

Months past & my surgeon tried one last time to fix me by giving me another epidural in my back. This time the injection was really painful & unfortunately it didn’t work at all. Not even a tiny improvement. After no success with the epidural the surgeon said he wouldn’t perform any more surgery on me but he did refer me for hydrotherapy (it’s physio exercises in water). Hydrotherapy did help me to improve a bit but I didn’t improve enough in my allotted sessions so my sessions were stopped.

As of now (June 2016) I still have to use a crutch to get around the flat or short distances and I use my wheelchair for further distances as my legs/back are too weak & painful. I have constant pain all day everyday & I’m taking several different medications to help but unfortunately none of them help enough with the pain. I don’t attend any physio sessions as I’ve been told there’s not much more they can do for me but I do do my own physio exercises at home as often as I can. I’m not at work at the moment due to my very limited mobility, constant pain & other medical issues but I’d love to get back to normal & have a job again. I try to fill my days with tasks & activities so that I never get bored even if that just means doing the washing up whilst perched on a stall or writing my blog. I know that there are lots of people out there who are in a worse position than me so I know things could be worse and I do try to keep positive as much as I can but sometimes things are really tough so I do get a bit down & start thinking negatively. My condition isn’t likely to get better anytime soon but I’ll keep working at it. I’d also like to say a big thankyou to my boyfriend, Jon who’s been such a great support to me in every way & I know that this situation isn’t easy for him either. Hopefully I’ll get better one day & stay better! Once I’m better we’ll be taking that long overdue holiday!

Thankyou very much for reading. I hope this has given you a bit more understanding & empathy towards disability & chronic illness. If you’re going through something similar or have a long term health condition then please let me know in the comments 🙂

Kate x