For those who don’t know how I became paralysed, I’ll tell you.
Walking home from a night out with my friends, distracted, I crossed the road at the wrong time. I was hit by a van and thrown 30ft down the road. A split-second decision changed my life forever.
My injury was at the very top of my neck (C1/C2). I have an incomplete spinal cord injury though which means that I have some function below the site of my injury. This includes slight movement in my neck, shoulders, fingers on my left side and toes on my left side. I have a little bit of feeling everywhere except around my waist. Sometimes pain I feel can be deferred pain, and I feel it in a different part of my body to where it is actually sited.
I wanted to share with you some of the areas SCI affects my life, and how I live with these things.
Osteoporosis – Sadly, I did not find out I had this until I broke my right leg during a collision with a shopping trolley! I know; how many people who are paralysed can still break their leg! They say that 80% of people with an SCI will develop it from their bone density decreasing. I could have prevented it in a small way by having a healthier diet than I did in the early days to included lots of food rich in Vitamin D and Calcium. I now take Calcichew tablets daily and have a Prolia injection every six months so that I will be less prone to breaking bones in the future as it can increase bone mass.
Lack of sensation – Having an incomplete SCI means that I can feel people touching me, not like before my accident or how you would feel touch, but I can still feel it. The best way I can describe the sensation of someone touching me is as if you’ve been sitting on your hands for a minute; they feel slightly numb.
I am also able to indicate if I have feelings inside my body, for example, if my catheter has a kink in it so my bladder will feel full or if one of my shoes was not on properly I can usually tell my carers before it starts to mark my foot. I can also normally sense if I have been sat for too long, which may result in my bottom getting sore.
Bladder issues – Due to my bladder not working, I have a catheter (which is changed monthly) that goes straight through my abdomen and into my bladder so that it can drain. I have experienced some issues over the years with my bladder and catheter, for example, bladder stones and bypassing (which is when I can urinate out of the hole in my abdomen or via my urethra). Often when issues arise with my bladder, it is because it is coming to the time when my catheter needs changing or if my catheter is starting to get blocked with little bits of sand from the bladder stones I unfortunately have.
I have always been quite conscious of my leg bag and used to put a jumper or a big scarf on my knee to hide it underneath. More recently though because of the fact I now have a work wardrobe and don’t want something bulky on my knee all the time, I have started to use leg bag covers which are really discrete and sit by the side of me.
Pressure sores – As I’m unable to move around like an ‘able-bodied person’ when I’ve been sitting in one position for a while, I’m prone to getting marks on pressure areas such as my bum, heels and the boney bit on my back. I need to have regular daily pressure relief where I lay on my side in bed. This helps to prevent me from developing a pressure sore.
In the Summer of 2018, I developed a really bad pressure sore on the boney bit of my back. This resulted in me needing to spend 22 hours a day for three months laying on my side in bed. It was a scorching summer that year, and I had fans on all the time to keep me cool. I remember really missing having a daily shower and hair wash! Everything was carrying on as normal around me, and I found that really difficult. I just wanted to be out and about enjoying the weather and carrying out my work like everyone else was doing. I just kept focussing on the fact that I had planned a big party for my 30th birthday in the August and I was determined to be better for it, which fortunately I was.
Bowel related problems – Due to my bowels not working naturally, I had to have daily enemas to try to get my bowels to open. For the last seven years, I have used the Peristeen system, which I find much more dignified, and it is much more successful. It works just like colonic irrigation and is a more natural way to go to the loo.
Breathing related problems – Because of not being able to breathe properly after my injury, I was given a tracheostomy and ventilated. Even though I was able to come off the ventilator after a couple of years of trials for most of the day, I still go on my ventilator periodically to give my body a rest.
As I am unable to cough and clear my chest by myself, I have nebulisers at least twice a day to loosen any secretions. I use a cough assist machine twice a day after the nebulisers which enables me to have six big coughs and then my carers will remove any secretions using a suction machine. This procedure does take a while to get used to, but the benefits of using a cough assist are great. It’s a safe, non-invasive procedure to help remove secretions from your lungs. The removal of secretions is important as it significantly decreases the risk of developing a chest infection.
Autonomic dysreflexia – This is a condition in which your involuntary nervous system overreacts to things on the inside or outside of your body. An example of a trigger in my case could be a blocked catheter or my bowels not being opened for a long period of time. I can only remember one really bad episode of autonomic dysreflexia where I experienced a really bad headache, my eyes rolled back in my head, and I was spasming really badly. This was while I was in Sheffield hospital, and I was glad that my Mum was with me as she learnt how to respond in case it ever happened again. I do occasionally experience mild episodes in the form of increased spasms and it is often related to my catheter, but it has also been linked to pain too.
Bad circulation – The blood doesn’t flow around my body as it would with an able-bodied person, so my legs (my feet in particular) get cold and sometimes turn purple! I regularly need to elevate my legs to encourage the blood to flow around them. I am also unable to tell whether I’m hot or cold or regulate my body temperature so I find myself often asking for a blanket or fluffy socks to be put on me even in summer. My carers keep a close eye on my body temperature because of this as I wouldn’t know if I was starting with a temperature which may indicate an infection.
Rehab and Treatments
Reflexology - In the early days I used to travel to Wakefield to see a physiotherapist but, due to the travel time, I decided to see a private neuro physiotherapist and have done so for the past five years. Hettie comes to my house every Friday for an hour, and I really enjoy my time with her as my body gets a good stretch! I always feel relaxed after my physio session.
My care team do a routine of daily passive movements at least once a day, which exercises my fingers, wrists, ankles, arms and legs. I often get cramp in my legs and my whole body can often spasm too during the day and night, so I will often get my carers to stretch and massage my legs, arms and hands.
Hydrotherapy - I have had hydrotherapy in the past offered, but as I have a fear of drowning, I declined it. A family friend who taught me to swim has said she would come with me to try it, so maybe now is the time to try it.
FES/TENS Machines -
My hands have always needed encouragement to open up as, since my accident, their natural position is to clench up into a fist. Whilst in the spinal unit my Occupational Therapist started to use FES (Functional Electrical Stimulation) therapy. This therapy is similar to a TENS machine. FES uses
low-energy electrical pulses to artificially generate body movements in individuals who have been paralysed.
I have also used FES therapy in the form of a FES bike. FES bikes allow people with little or no voluntary arm or leg movement to pedal a stationary cycle. The benefits of using an FES bike is that it can improve muscle mass and strength, increase bone density, increase your circulation and reduce spasms.
I have also had Botox in my hands and forearms to release some of the tension I have here. Tension in these places is quite a common side effect for people with an SCI. I think that this works quite well as it relaxes my hands and does help prevent them from clenching into a fist.
I had some splints made that I should wear on a night as they can help to keep my fingers in a straight position, but I must admit that I often forget to put them on!
I really hope that all this information is of use to those who are starting on their SCI journey. There are so many different treatments and rehabilitation programmes available to you, and it is worthwhile exploring everything which is offered to you. Ask the questions, find out the benefits and try it.
Even if it doesn’t work for you, if you don’t try it, you’ll never know!
If you would like to contact Lauren, or have any questions then please do get in touch at: