Living Life on Wheels

Belle and I were at Secondary School together. She was in the ‘cool girl gang’, the sort I hung out with a bit but was also in awe of. My overriding memory of her was doing an amazing performance of the Fugees cover of ‘Killing Me Softly’ in the school talent contest. Funny the things that stay in your mind all these years?

Life has changed a lot since leaving school in 2000.  Particularly for Belle who now finds herself in a wheelchair. This time I’m in awe of her for how she’s dealt with this challenging journey and proud to be able share her list ‘Living Life on Wheels’:

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I went from being a fully able-bodied, fully functioning, sporty, independent woman, to a blind and wheelchair-bound woman overnight in 2007, being struck down by a rare illness called Neuro Myelitis Optica. My life changed dramatically and I physically changed dramatically, but mentally I am still the same person who wants to take on the world, now it is in a slightly different way:

• Each day has to be taken as it comes. I try not to let things stress me, as that is when everything starts to go wrong. I will have bad transfers, my pain will increase, and I will become tired more quickly. I try to start each day with meditation and positive thoughts (even when I want to tell the world to do one).

• I work on a food plan for each week, being overweight and on wheels is hard. When I initially fell ill and was on a load of steroids and went up to 18stone life was extremely difficult, transfers were more difficult, getting up and dressed seemed to take hours and with help from other. Now a good 7+ stone lighter, I am able to be up and out of the house in 30minutes, that’s even with a hair wash. The food we eat is so important and weight management is key to ensure making life on wheels a lighter and better place to be.

• Everything in moderation. If I want cake I eat cake, but I now try to make my own in a healthier way than buying something processed and full of additives. I try to be mindful of what I am putting into my body.

• Don’t beat yourself up for not being able to do something or do something like you used to. Take a step back from the situation and look at how you can do it, just differently.

• Tasks in life might take longer and have to be done in a different way, but they can be done.

• Exercise is important but so are rest days. I try to work out about 5 times a week, boxing, using resistance bands, weights and good old pushing around taking the dog for a wheel in the countryside to get the heart pumping.

• Research and more research, the doctors are only so knowledgeable, and my favourite saying from them and the nurses is ‘everyone with spinal cord injury is different’. This is true, just a much-overused phrase. It is good to build up your own toolbox of knowledge about your injury and what can help support being the best you, you can be through foods, alternative medicines and therapies, sports you enjoy and anything else you find fulfilling in life. Don’t stop the things that you used to do, just look at how they can be done on wheels.

• Mind those knees!! If you do not have any or limited feeling in your legs, you have to be so careful of your knees. It is so easy to be putting the washing onto a radiator with your knees up against it, as you don’t feel anything, you won’t feel them slowly burning. This is the same with the oven, if the oven is at leg level and your hob is on top, then you will need to be mindful of where your legs are. Hot things burn and can cause serious damage.

• If you feel tired sleep, if you need to rest, rest, if you need to eat, eat, your body is a marvellous thing start to listen to it and it will make life so much easier.

• Pressure relief is soooo important. Your Therapists at the Hospital should show you how to do this, but the aim is to get off  the pressure points in your bum each hour for 2 minutes each side by leaning GET OFF THOSE CHEEKS!

• The lovely thing with spinal cord injury is how much I get to speak about my toilet habits! Seriously everyone (nurses, doctors, specialists etc) all want to know about this exciting part of life. I find its best to be open, understand how my body feels when I start to get a urine infection or when I start to feel like I am getting constipated. It is vital for us wheelies to understand these bodily functions to minimise discomfort, pain and most importantly infection.

• Catheters will become a daily part of life. There are 3 main ways of having/using a catheter. These are Indwelling (a surgical procedure to have a catheter come out of your bladder), Urethra (goes in near your bits, I like these  on a weekend so I can go out as I please without worrying about where a loo  might be), and intermittent (these are used by people without the other 2 kinds of catheters into use after going to the loo to ensure your bladder is empty). Make sure you make your own choices on how you want to use catheters and don’t be forced into something you are not comfortable with, make sure you speak to people and do research to make the appropriate decision for you.

• Understand benefits and what you are entitled too, speak to your support worker and reach out to the local council to discuss.

• Minimising stress levels is key and so important for people with spinal cord injury; I have tried all sorts of alternative therapies, some which have worked well such as meditation, reiki, reflexology, massage. Some that have not worked so well, a lady standing over me and banging a drum while chanting for an hour was not my idea of calm!

• Don’t be afraid to ask for help, but don’t be forced to accept help if you can do it.

• I am lucky enough to have a fantastic family and great friends around me, but I know that others with spinal cord injury can get lonely. Make sure you reach out to your local council for help and support, speak to the Occupational Therapists, they can help find local groups to get involved with and support with transport to get you there. You are never alone.

• Get on social media, this way you can find groups of like-minded people, have discussions about coping, issues and generally living life. Facebook is great for this.

• Wheels don’t stop you from doing things; they just mean things are done in a slightly different way.

• Take the Dis out of Disability and you have the ability!