This is my FreeGo Pump. (no I haven’t nicknamed it “FreeGo” – that is the make of the device😂)
I use this most nights to provide myself with all the nutrients and supplements I need to get through every day. I don’t eat or drink enough within the day to survive basically so, at the moment, I need this to help build me up and keep me fit and healthy.
Different pumps have come and gone throughout the time I’ve had tubes into my stomach. Ever since September 2012.
I remember when I first got told I’d need a machine to pump fluids/nutrients into me… I was petrified. I’d seen TV shows and read in magazines of people, adults and children, who live off these machines day in day out, leading a very limited life due to the fact that they were fed through a tube.
I was scared that I would become so dependent on a machine that I wouldn’t be able to do “normal” things. Go out for a meal with my family. Meet up with friends for a coffee. Go shopping. Go for a walk in the park. All simple, silly, normal things. I felt like people would stare at me and feel sorry for me. I didn’t want that. I didn’t want to feel vulnerable like that.
Time went by and I started using this ugly looking pump machine pumping this milk mixture into my stomach through the tubes I had connected.
At first, I was using it on and off throughout the day as well as at night. It was horrible. I went to family events connected up to it and felt embarrassed. I felt like I was weak. I felt trapped.
I felt like I wasn’t getting anywhere. I didn’t want to be connected up to this machine for life. I wanted to live a life. I wanted to be free.
More time went on… And things actually started improving. The first big step was having the tube that I had in my nose removed and replaced with a direct port into my stomach. My Mic-Key button (no… not a nickname😂). I didn’t have to witness people staring at my face anymore! My face was clear from tubes and sticky dressings!
The next step was using the pump less and less. It took some time but eventually I became less and less dependant on it throughout the day. I was able to go to school, meet up with friends, and just start enjoying life a bit more because of the freedom!
I grew stronger and managed to alter the times that I have my feed (because I still relied on it) to night time only. Meaning, I’m only on it whilst I’m asleep in bed!
The only thing I alter now days is the rate of which it pumps the feed into me. I have recently found a nice rate per hour (65ml) that means I get a good amount of fluids and nutrients throughout the night, plus a reasonable appetite during the day! (the higher the rate, the less of an appetite I have throughout the day – which makes sense)
Being connected up to a machine seemed like a big deal at first. But now, now that I’ve proved that I’m in control and it is not limiting my life, it’s a piece of cake! It has become my normal bed time routine and I feel a bit odd having nights without it😂
Katie's Journey 