Welcome back guys to another segment of “Me & My Disability”. This is part 3 and hopefully the final post where I will be talking solely about my disability, for a while anyway. If this is your first time reading this segment on my blog then here are the links for PART 1 and PART 2. This segment is based around a video that I posted on my YouTube channel where I explain briefly about my disability and show the different machines that help me live my life to the fullest, you can find that video HERE, and please don’t forget to subscribe to my channel.
Anyway, last time I spoke about my Bi-Pap ventilator and that I got it when I was 8 years old, which was a very traumatic time for me because I had to get used to so many different things in regard to my health. Well another thing beside my Bi-Pap ventilator that I had to become used to when I was 8 years old was being fed nutritious milk through a nasogastric tube that went up my nose. This was before I got my ventilator. The reason that I had to get this was because I had a hypoglycaemic episode. This is very similar to diabetic episodes except the more sugar I have the better I am. I’m not able to hold nutrients for as long as other people which results in my blood sugar dropping if I don’t eat every so often. Although because of my body size I get full very quickly and even though I eat small amounts every so often I still don’t get enough nutrients. When I have a hypo, it means that my blood sugars are low and if they ever go dangerously low I could go into a comatose way. This luckily has never happened apart from when it was first discovered there was a problem and that’s because of my feeds. In the beginning, I would have 50mls of the feed after lunchtime and after teatime as well as 800mls of feed overnight. Having these feeds gave me the nutrients that I needed to live a healthy life. Below is a picture of me with this tube.
I had this tube for 3 years and I can honestly say it is one of the worst things I have had. Every time I had to get it changed it felt like it was going up to my brain and believe me that is not a nice feeling, I got it changed EVERY 6 WEEKS!!! It didn’t go up to my brain though, but try telling an 8 year old that. No, a nasogastric tube in fact goes through your nose, past your throat and down into your stomach. It doesn’t stop me shivering at thought of it and when I see someone with one I get this horrible feeling.
I don’t have this tube now thankfully, but this doesn’t mean I’m better. Instead I have a gastrostomy tube which goes directly into my stomach. I got this tube when I was 11 years old just before I moved up to high school. I think the reason behind getting it then was because I was moving to a different school where I would not have met most people before so nothing would be on show. Let’s face it people stared at me more when I had a tube up my nose, who wouldn’t, it’s something different. The gastrostomy tube is also known as a Percutaneous Endoscopic Gastrostomy although who would remember that so it’s shortened to PEG, which is what I call it. Here is a picture of me with my PEG that I took on my holiday last year. It’s the first photo I’ve ever taken where my dressings are on show. These dressing protect my PEG from getting damaged. Not every person with a gastrostomy tube has dressing but I feel safer with them.
Anyway, in order to get my PEG I had to go through to Yorkhill Hospital in Glasgow to get it surgically inserted, the reason I had to go through to Glasgow was because my breathing can be monitored more there. I had to get one PEG for a whole year to allow my body to get used to something new and for my wound to heal then I had to get another operation to get that removed and a type of PEG to get inserted which can just be changed in my own home.
This PEG luckily only has to get changed every 6 months which is so much better than my nasogastric tube. I will admit I used to hate getting this changed however, like everything as I am getting older I don’t find it as bad. On a daily basis, I don’t even feel my PEG however, it can occasionally cause me discomfort. I’d rather that than the other option though, I remember a few years ago the tube in my PEG got blocked and I got told if this didn’t resolve the I would have to get a nasogastric tube until I got home as I was respite for the weekend. Well it’s fair to say I refused to get that and I even said I’ll stay up all night and eat chocolate if I have to (it’s a hard life, haha). It unblocked eventually, but ever since then I have taken my spare PEG even if I go somewhere for one night.
So that’s my disability in a nutshell, for just now anyway. There’s probably aspects that I haven’t really spoken in depth about which might come up in later posts but everything I have written are the main things that I’ve had to endure so far in my life. There the things as I’ve said that help me live my life to the fullest and I don’t let them defeat me. I’ve learnt to adapt these different health aspects around my life and not adapt my life around them. Things may arise later on in life but you’ve just got to live life one day at a time and not think too much about what may happen in the future. Everything happens for a reason and usually that reason turns into something good.