Last week I spoke about the three disorders that I have which affect my ability to do things and in turn mean that I live with a disability. If you haven’t already read Me & My Disability part 1 you can find it HERE, but today I am going to continue with part 2. To be more specific I am going talk about the respiratory problems that I face and my journey of having to get used to having a feeding tube.

Transferring out of my wheelchair is very difficult for me to do as I cannot weight bear. To get out of my wheelchair I use a one-track hoist system that goes from one side of my bed to the other. I don’t go right across but I park my wheelchair at the side of my bed a hoist up and go along onto my bed. There was a quick demonstration of this in my video. As I mentioned in my video I am thankful that I can use the hoist remote myself, which means that I am still in complete control of where I move and if I don’t feel safe I can stop. I have used a hoist I think since I was in primary 5 at school although I only started using one at home when I was 19, my dad used to lift me but one day I broke my leg and never got lifted again (that story is for another time though). Using the hoist for the first time was scary, but I think it’s scarier for people that have been able to walk themselves then have to use one, I know my grandparents didn’t like it when their health deteriorated and had to use it. But I’ve never been in control of being able to move myself and I can tell you it feels 100% safer than being lifted. One problem that I have with using the hoist though is sometimes I can feel breathless in the sling. This is because of my respiratory problems.

one-track hoist system
This is the one-track hoist system that I use.
me in sling attached to hoist
This me in my sling that is attached to the hoist.

I don’t feel breathless all the time and I’m not asthmatic but from time to time I feel I have to work on my breathing more and it tires me out. Breathing should be second nature to us all and something we don’t have to think about but for me sometimes I do. Up until the age of 8 the only respiratory problem I had was chest infections. Mostly every winter mainly I would be struck down by a chest infection and more than likely end up in hospital. Some were worse than others but none of them were good. The only thing I had at the time was oxygen to help me breath better and this horrible machine called a cough assist. That machine was the worst it would literally pull the cough out of you because I didn’t have the strength to cough hard enough. Anyway, when I was 8 years old a lot changed. The year of 2002 was a very tough year for me because I had to get used to so many different changes to my health. In regard to my respiratory though was having to use my Bi-Pap ventilator overnight. Now you may be thinking “what’s a Bi-Pap ventilator?” Well this is machine that is attached to a mask which I wear over my face whilst I sleep which helps me breath. The reason that I need to wear this is because there is a chance that if I go into a deep sleep then I could stop breathing. This machine pumps air in and out of my lungs to prevent this from happening.

me with Bi-Pap ventilator and mask attached
This is the Bi-Pap ventilator that I use overnight with the mask attached.

Like I said before sometimes I feel I have to work on my breathing sometimes especially when I am ill and wearing my ventilator lets me relax and breaths for me. I was the first child in Tayside to get a ventilator and because Ninewells Hospital didn’t know anything about them yet I had to go through to Yorkhill Hospital in Glasgow so the specialists could monitor my progress. It was there that my mum and I stayed for 3 months for me to get used to the ventilator. Why were we there so long? That’s because I was stubborn, still am sometimes I guess. I wouldn’t put the ventilator on, which is funny now because in the morning I don’t want to take it off. It was a surreal thing to have to get used to, imagine putting something on your face that just blows air on you. It got to the point where the doctors said if I didn’t start using it then there would be life threating consequences. I wasn’t told this though because I was only a child and my parents felt that leaving me to come to it on my own instead of pressuring me. They were right one day I just allowed it to be put on me and I’ve worn it ever since. Looking back, I obviously knew I needed the ventilator and it was important to my health, I suppose in comparison to walking before you can run, pressuring someone to do something isn’t going to make them do it any faster.

Sorry guys this segment of me talking about my disability is going to have to be cut into three parts. There is obviously alot I want to share and I feel this blog entry is becoming very long, I’ve already got a blog post planned for next week so you’ll have to wait 2 weeks to find out how many journey started of using a feeding tube and how I continue to manage this.

4 thoughts on “Me & My Disability part 2”

  1. Found your blog really interesting. Not always easy to ask those personal questions so I love your matter of fact approach. Take care

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