G’day my friends and welcome to another blog!
If you are like me you probably watch your fair share of ‘day in the life’ or ‘morning/evening routine’ vlogs on Youtube.
There is one day in the life though that isn’t really popular. That is what a day is like living with a Disability!
So I thought this weeks blog could be all about what a day is like living with my condition. Bare in mind though everyone’s ability is completely different, and this is only my experience.
However, at home I am mostly independent as it is set up the way I need it. So I thought I would do a day in the life when I am away on a holiday!
Day in the life: Morning!
Depending on the height of the bed changes this whole part of my day!!
If the bed is too low then I can’t get out of it by myself because of my weak quad muscles.
So if this is the case, I will generally have to stay in my bed on my phone until I hear someone else is awake and I can message them to come and help me up.
The next thing I do is make my bed. I have to try and be clever with where I put the decorative pillows because I can’t bend down and pick them up. I have figured I can pile them on a shelf in the cupboard or wedged them in the cupboard door! I have left a link at the bottom for you to check it out!
Day in the life: Bathroom!
After I make my bed, the next hurdle is going to the bathroom. I am fortunate that my condition doesn’t affect my bladder and bowel yet so that isn’t an issue. The tricky part is the toilet itself.
Usually toilets are super low and I can’t get up off them by myself.
So I will grab my clothes and my phone and will then head into the bathroom. Not before alerting someone of course that I am in the bathroom and will need help.
While I am doing my thing, I will get changed that way it saves me time and needing more help with my bottom half because I can stand in pants like everyone else.
Once I am decent and won’t scare anyone, I will send a funny GIF to whoever is going to help me. The GIFS get funnier depending on if it they need an oxygen mask or not… if you get me.
Now brace yourselves for a bit of TMI, but honesty is the best practice!
I also struggle to ‘clean myself up’ depending on the reason to visit the toilet. My short arms make this impossible if the wall is right next to the toilet and the lid of the toilet is a strange shape. I have had many cut elbows from wedging it against the lid because the lid was odd.
So I will need someone to help me in that department. This usually includes random conversation of what the plan is for the day and talking about the news. Anything to make is less awkward!
After that is all taken care of, I can continue with my day!
Day in the life: Food glorious food!
Another thing that most people won’t have to think about is how their fridge/freezer combination is set out.
At home, the freezer compartment is below my fridge compartment. I access the fridge more than the freezer, so everything I need is at eye height which is perfect.
When I am away, it is usually in the opposite configuration, so I will need help getting out a water jug and any food items in the back of the fridge. This is because my Titanium Spine, mixed with weak muscles like to cause trouble and make me more hangry.
Anyway, we have learnt from past experience to pack our own knife. The blunt knives in hotel rooms tend to be super blunt, which doesn’t help anyone! Havin a sharp knife makes cutting things so much easier am I right?!
I am fortunate that I am able to make my own food and have adapted ways in which cooking things is a lot easier!
Day in the life: Getting on and off the beach!
I think I have said in a previous post that getting on the beach is pretty difficult.
There have been numerous times where I have had to be man handled onto and off of the sand.
Try walking on dry sand on your toes.. Yeah pretty tricky!
I have been blessed to have used a wheelchair accessible beach mat a couple of times. The Gold Coast council has invested in some of these to make getting down to the hard sand a piece of cake. You can literally push a wheelchair or even a pram on it without getting stuck and being catapulted!
If I didn’t have this, the next option is needing help by someone else. Usually I had onto someone’s arm (preferably two people either side) to offer a little more stability. This works well for getting onto the sand. It is a littler trickier getting off, by that point I am exhausted.
Getting off requires a little more man handling. I tend to have to get carried off the sand. Lately though I have felt strong enough to do it myself which was a big win!
To sit on the sand, I then have to have someone lower me onto the towel. They simply just grab me under the arms and walk me backward till I am sitting, and then will need to lift me straight up under my arms when it is time to get up.
Yes if you are wondering, my underarms do tend to get bruised if a lot of lifting is needed. It is that or chilling in the apartment. I would much prefer exfoliating my legs with sand!
Day in the life: What about a swim?
I am not a big surf swimmer. I have never liked swimming in the ocean, especially when the surf is up. Being a toe walker and being weak, a small wave is enough to result in me eating a mouthful of sand.
So I choose to wait until we go to the pool.
The pool was my happy place. The feeling of being weightless and being able to do anything made me so happy.
Getting in the pool is as easy as diving in….. or sometimes belly flopping into the water. Yeah ouch. Don’t judge i am no Melissa Wu or Matt Mitcham!
I don’t need any help when I am in the water, so i can swim around like a baby whale in the meantime until shrivel like a prune!
Getting out is a different problem. I need help getting out. Everyone knows the feeling of getting out of the pool and the heavy feeling that comes with it. For me that heaviness is doubled. Try getting out of a pool with weights strapped to you. Yeah not easy.
So I well have to pretty much be dragged up the side of the pool in the shallow end. This sometimes results in a scrape or two on my back or legs or ankles. Pool hoists are not a thing in most accommodation places where I holiday at yet. But, it is totally worth the hour or so of complete freedom!
Obviously wet togs are everyone’s worst nightmare. I will need someone to also help me out of my togs, since I am pretty weak at that point from fatigue… Of course I am in my room when that happens. I don’t want to scare the poor elderly people enjoying their Sunday!
Day in the life: Shopping and restaurants!
Who doesn’t love a good shopping experience!? I love have a bit of a shop or even going to a café while away.
This takes a bit of planning though for me in terms of accessibility. If we are going out for dinner, I have to google where we are going, and check google maps to make sure it is accessible. There is nothing worse than being hungry and not being able to get to your table because it is up a flight of stairs!
Getting into an accessible restaurant is fine, I don’t need any help. Leaving though is a different story. I will someone to lift me up from my chair at the end of the meal. Weak Quads for the win again!
Shopping though is a little different. I take my scooter, which means my feet never get sore and can shop till my hearts content. Of course shopping trips involve some humour, especially when getting out of my scooter to go into shops.
I find I have no choice but to park my scooter outside of shops, purely because they don’t leave enough room between shelves to allow prams, wheelchairs, walkers or even scooters past without getting stuck.
Parking out the front lends itself to may glares, stares and sometimes comments, when I get up. Would you believe I have had enough someone come into a store I was in ask who’s scooter it was and was I using it. That caused a bit of humour for my day.
When it comes to going to the bathroom in public, I try my hardest not to have any liquid when out and about to ensure I don’t need to use the disabled bathrooms. However sometimes that isn’t possible. I find using the disabled bathroom nerve wracking purely because I still get the occasional glare coming out of the bathroom, especially if I am not in a chair…
Or even if it is engaged and a parent and their child walk out of there, and they did not bother to flush, or even another person using the disabled bathroom because they had a pain in the stomach and didn’t want to use their bathroom. I am shocked I do not have a hole in my tongue from biting in to stop myself from saying something. I do recognise that sometimes people have no choice and it is either that or sheer embarrassment. Still catches me off guard though!
If I do use the disabled bathroom, I need help from someone to again help me off the toilet, because the rails don’t help me.
Other than that, and trying to reach grocery items in a Chair, I am completely independent when shopping and dining out! Score!!!
Day in the life: evening time.
When it comes to the evening, I am mostly independent. Which I love! There is nothing better than sitting on the balcony watching the sun set or listening to the waves crashing.
The only thing help wise is getting off low couches and dine room chairs.
Oh and obviously my bathroom ritual like I explained before.
Other than that I simply re-stack my pillows in the cupboard and either literally climb into bed or flop and risk being bounced of the bed and onto the floor. Yes that has happened and yes i wish i had footage of it.
All in all
So why am I walking you through a day in the life when I am away? I feel so many people don’t see just how much effort it takes to go away.
When you are away from home, you have to learn to adapt to your surroundings, because not everything in an apartment is accessible. But that is ok!
I am not a person to feel grumpy because the fridge isn’t accessible, or one of the lifts are broken. There are worse things in life.
I want to show people that you can enjoy your holiday even if you may need a little man handling once in a while. Would it be even better if it was a super attractive person doing the handling? Oh yeah!
There is nothing wrong in needing a little extra helping hand.
I also hope that by sharing my routine so to speak, that carers understand just how valued they are. I love each person who has cared for me and helped me in my short 22 years of life. It creates a bond that no one else would know.
Also, if you see someone coming out of a disabled toilet, don’t gawk unless they are a child and parent or someone who looks suss coming out of the bathroom.
If you see someone struggling in the grocery isles, go and ask if you can help them grab an item for them. It makes the world of difference.
Stay safe,
Rhi
ps. Check out my other blogs on Holidays and let me know what you do to make holidaying a fun experience! https://livingabled.com.au/holidays-my-4-hidden-gems/
Anither really goid read. I learn something from every blog you write.
Thank you, just awesome.
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