Caitlin's story
Priory Ogilvie supports resident to lose 30 stone.
I didn’t know what Prader-Willi Syndrome was, and at the time, I was still just left to get on with my usual life. My family also struggled with my behaviours and didn’t understand what was happening. The staff here have helped me to learn more about it and this has helped me to know why things have to be done in a certain way and why rules have to be made to protect me.
Living with Prader-Willi Syndrome - Caitlin's story
My name is Caitlin*; I am 29 years old and I was diagnosed with Prader-Willi Syndrome when I was 16. I used to live at home with my mum and step-dad, but I came to Priory Ogilvie when I needed more support with my condition.
I didn’t know what Prader-Willi Syndrome was, and at the time, I was still just left to get on with my usual life. My family also struggled with my behaviours and didn’t understand what was happening. When I used to get upset, my response would be to go and buy food. I would have tantrums and break things if I couldn’t. I quickly started putting on a lot of weight from around the age of 13 – I would sleep on the sofa and my parents would bring me food whenever I shouted for it. I couldn’t be bothered to exercise anymore and I would order takeaways all the time.
When I got too big, I would use a mobility scooter to get around. I would visit McDonalds and Greggs and sit in Costa all day, ordering lots of food. I would also go to the corner shop and buy lots of sweets and biscuits to take home.
A turning point for me and my family was one when I fell trying to get to the toilet. My dad couldn’t lift me, and the ambulance needed the fire service to help get me to the hospital. It turned out I had sepsis from a skin infection under my belly, and I could have died. Thankfully I made it but I was advised that I should live in a residential home where I could be looked after.
At that time, I worried that would be my freedoms gone, and I was really upset, however when I got to Ogilvie, I soon settled in, made new friends, and it was the best thing that could have happened to me.
When I first arrived, I was 44 stone and I needed help having a shower, going to the toilet, managing meals and controlling calorie intake. At first, I wasn’t used to smaller portions, and I would get very upset, but the staff would prepare my meals and this eventually helped me start to lose weight.
At first, the kitchen being locked really annoyed me. I just wanted to make my own drinks at least, but over time, I got better with this and understood why it needed to be. I do have bad days still but the staff help me when I need it. I sometimes try and run away from them but they never give up on me.
The staff also helped me to exercise and I started off by walking up and down the ramp in the garden. I started to be able to walk a bit better and get into the bath. I didn’t like proper exercising but found I enjoyed cleaning. I like to clean everything and it helps me burn calories; I clean all around the house and the site cars too; it also keeps my mind busy. I do a lot of gardening and I have my own garden patch which I take care of. I also like to walk to see the goats which live on a farm.
I have now got to 14 stone and I don’t need my stick anymore. I can do lots of things I couldn’t do before and now I have lost a lot of weight, I can have some treats. I now also have a voluntary job I do every Monday morning which involves animals and cleaning! I get to go to Costa afterwards and have a coffee and some cake.
The staff here have helped me to learn more about my Prader-Willi Syndrome. It has helped me to know why things have to be done in a certain way and why rules have to be made to protect me.
I’ve done well at Ogilvie. It’s been really hard sometimes but I never stopped trying – I never gave up. I want to go to supported living now I have lost all the weight.
*Name changed to protect identity