Last week I asked you all on Twitter and Instagram to send me any questions you have about my disability, here are the answers!
How often does your tube get cleaned / changed?
I have tube change once a week, however my tube sometimes gets blocked and I have to have an emergency tube change. I clean my tube and the skin around it with damp cotton wool every morning and night.
Can you feel the metal in your back, will it always be there?
I can’t feel the metal rods in my back, but you can see the lump at the top of my back where the rod is. As long as it doesn’t move it will stay there, even if the rods had to be removed for some reason, they would just be replaced with new ones!
Did you go to mainstream school?
Yes, I did. When I was very young I went to the Ronnie Mackeith Centre at (now sadly closed,) which helped prepare me for mainstream school life. It also meant that I was able to be taken straight to my hospital appointments, such as speech and physiotherapy during the week, as the centre was attached to the Children’s Hospital.
I have a child with a severe disability - what’s one bit of advice you would give him going into school?
You’re different and be proud of it. I would worry so much about having the same bag as everyone or doing my hair the same way to fit in. But when I look back, I laugh because it doesn’t matter what I do, I’m different. I will always be the small girl in a wheelchair with this tube sticking out her neck, what’s the point in even trying to fit in? Embrace being different.
Can you eat normally?
Yes, some foods such as crisps can sometimes make me cough, but that’s the only problem I have with eating.
Can you care for yourself? Do you need help eating, drinking, getting dressed etc?
Yes, I can care for myself in day to day life. The help I need is purely medical, i.e help using my machine if I’m having a coughing fit or with tube changes. I don’t require any help with eating, drinking, getting dressed or washing.
How many operations have you had?
Can’t say I’ve counted. For several years I was having small operations twice a year at Great Ormond Street Hospital, so who knows.
The main operations I’ve had are;
Spinal fusion: I have double scoliosis, which is a two-way curvature of the spine. and had a spinal fusion when I was about 5 years old. This 6 hour long operation involves the curved vertebra being fused together (to stop them getting any worse) and held in place by metal rods.
I don’t really remember a lot about this operation other than morphine was my best friend, but the surgery was a success and my metal rods are still in place today.
Airway re-construction attempts:I have had several re-construction attempts on my airway, from what I remember I had two types of re-construction surgeries.
Rib Grafts– (The proper name for this surgery is a Laryngotracheal Reconstruction, so we’ll just stick to calling it a rib graft ok?) Basically, this operation consists of the surgeon removing a small section of cartilage from my rib and stitch it into place in my airway to try and strengthen it and hold it open.
Stents– This type of reconstruction involves having a tube (the stent) put inside the airway to try and hold it in place. I would have a stent in place for 6 months and then would have another operation to remove it and see if my airway has strengthened at all.
After all my reconstruction attempts (I’m sorry I don’t know an exact number), the top of my airway (above my tracheostomy) was repaired, however the bottom part of my airway could not be repaired, which is why I still have my tube.
“Scopes”:I remember these operations being referred to as scopes, but the actual name is a microlayngoscopy and bronchoscopy, I now understand why my doctor just called them scopes! This short procedure required a general anaesthetic which allowed the doctor to look into my airway using a small telescope through my mouth. They would check to see if anything has changed and would also sometimes laser away scar tissue which can build up where my tracheostomy sits inside my airway.
Doesn’t the pet hair make you cough?
I cough every day, where-ever I am so I could never say one particular thing makes me cough. Growing up, we’ve always had pets and I’ve never noticed pet hair affecting my breathing.
I do make sure I have my cover/filter on when it comes to bathing and grooming the dog. When I was younger I had rabbits and would always wear my cover when holding them just because of how much they shed.
Do you know sign language?
I’m not fluent in sign language (sorry Ellie), but I know some basics. I know the alphabet and commonly used words such as eat, drink, toilet, please and thank you. I also know ‘double-decker bus’, which I’m yet to find a need for?
It took me a while to talk properly, and part of me thinks if I was taught sign language, it may have put me off learning how to talk, just because signing would be easier (saves my breath!)
Do you find concerts accessible? Do your hearing aids cope?
I love going to concerts and yes, I think they are accessible. Most arenas have raised platforms for wheelchair users, so you get a good view and you can often get a free carers ticket. So when I drag Dad to see Olly Murs, at least he gets in for free! (I think he secretly loves him really!)
My hearing aids are normally ok, sometimes if there’s a loud bass that makes that vibration go round the arena (especially because I go to see bands such as Kings of Leon, Kasabian and Arctic Monkeys), it can make my hearing aids whistle. But I have digital ones which have a volume adjuster, so I just turn them down if I need to!
What’s one thing you would change access wise at Pride Park?
The lifts. I sit on the platform in the North East Corner where there are two lifts and one breaks at least once a month. We need new ones please Mel xxxx
Do you think watching football is a completely accessible hobby?
I’ve written all about my experience as a disabled football fan on my blog a lot, click here to read. But, in short, no. it varies from stadium to stadium, to get an idea of what championship stadiums are like, you can read my 2018/19 season review here.
What would put you off going (or going back) to a stadium?
I haven’t been back to a stadium where I was sat with the home fans, I don’t want to pay money to go to a match where I’m not with fellow Rams fans, it takes away from the atmosphere and enjoyment of the day.
I will visit every stadium once, but doubt I’d ever pay to go back to ones where I’m sat in the home end, unless it was a play-off semi-final or something!
Do you think society is becoming more disability friendly?
Depends what day it is and where I am. I think people are slowly becoming more used to seeing wheelchairs and other mobility aids when out and about. I mean I am unusual in that I have a tracheostomy and noisy medical equipment, so I’m always going to get the funny looks.
But people are definitely more aware of disability and aren’t afraid to approach you.
However, for every person who is friendly and accepting there’s another person who will stare at you like you’re wheeling round stark naked or make rude comments, so maybe society is making steps forward, but I would never go out in public expecting everyone to be kind and understanding. That’s never going to happen.
Can you please blog more? Would you ever vlog? We need more blog posts?
I got quite a few questions like this, so I’ve grouped them together. I’m trying to blog more, I mean this is your 3rd blog post in 3 weeks, be proud of that.
I’m unsure what to write about, I have a mixed audience of derby fans, fellow tracheostomy users and disabled bloggers, so it’s getting used to balancing the topics I talk about so my blog stays interesting to everyone. Please do let me know what you’d like to see me talk about.
Vlog? Hahaha I’ve never considered it, with my funny voice being the main reason, also I’m not sure what I’d vlog.
Thank you to everyone who sent me questions, I have quite a few I didn’t answer so I may do another post like this soon!