Katie's Diary

Taking control of my life

27th January 2017

My name is Wayne and I have been enabled by ubu to live with more independence in my own flat. At first I couldn’t eat like most other people do, I was PEG fed. This means I got my food directly through a tube into my stomach. But there came a point where I decided that I didn’t want this anymore. What I really wanted was to find a way to eat solid food again.

Working with my ubu enablers I worked out a plan to change things. My aim was to eat Christmas dinner like everybody else. Together with the ubu enabling team I took some expert nutritional and medical advice and we developed a plan so that I could change and manage the way I eat.

The first step was to have ‘blended’ soft food. I didn’t really like having my meals like this, but it was a way to begin to work towards my real goal. Over the next few months ubu enablers supported me to slowly increase the amount of solid food I could eat at each meal. Gradually we also changed the consistency of what I was eating to more solid foods.

It was exciting to make progress and at times I was frustrated and impatient about how it was going. I wanted to eat more and more different types of food, but as time went by eating became easier. By Christmas I was able to enjoy a festive dinner without the use of the PEG tube. I decided that the next step would be to learn how to prepare my own meals and enrolled in course in cooking at my local college and now I have NVQ in catering.

When I first moved into my own home, my speech was difficult for some people who didn’t know me well to understand.  Rather than assume they knew what I was trying to say or pretend they had understood, ubu enablers kept listening to me until they understood what I had said. It encouraged me to want speak more clearly so I could really express what I wanted to do next. As my muscles in my mouth strengthened, which was helped by starting to eat solids and swallow again, my speech became easier for people to understand and much clearer by the day.

So from being unable at first to eat as I wanted or tell people what I wanted to do in a way that they could easily understand, I had achieved some real independence for myself. The next step for me, once I began to feel more confident speaking clearly, was to buy myself a mobile phone and to have a land line telephone put in at home. It meant for the first time I didn’t have to ask anybody to make phone calls for me, or help me if people did not understand me.

In the early days of living in my own flat I needed full support to dress and to get into to my wheelchair in the morning. But I was determined to find a way to do more for myself. To begin with, the standing up was quite hard - and got harder as I put on weight through eating ‘proper’ food. Over time, and with physiotherapy, special exercises to strengthen my muscles and encouragement from my support team, I became more able to get about unaided.

I started dressing myself and getting into my wheelchair without any help. It took a lot of practice and hard work but soon I started to use a walking frame to get around. Now I’m strong enough to start walking without it.  I can reach all my cupboards, get my own dishes washed up and do most of the things I want to do!

Emotionally, this has not always been an easy journey. I often became impatient with how slow progress I was making seemed. When my mum passed away, I really struggled. For a while I turned to alcohol for comfort, I’m not proud of this, but at the time I felt it was the only way to deal with some of the things going on around me. The ubu enabling team helped me to find a local alcohol support centre and my GP gave me treatment for side effects of withdrawal.

Having recovered from that experience, I now feel that it is time for me to move forward again. I want to get closer to my family and to take control of my life in the way I want. I talked to the ubu enabling team and told them that my aim was to move to live even more independently in the community.

Working with my supportive ubu team, social workers and other people and organisations who have been helping me, I finally found the right place to make my new home. It is somewhere I can achieve the things that I’ve not been able to do in the past. I will be living with my daughter again, close to where most my family live, with a large garden where I can do all my gardening that I love doing. It has been an amazing journey for me that gets more exciting as time goes on.

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Taking control of my life

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