Disability Life: Dealing with constant and sudden changes

G’day, friends and welcome back to another week and another blog post.

My apologies for being a tad inconsistent lately, I have been in my final weeks of study and have been away. Speaking of which a couple of weeks ago, I returned from a week away at the Gold Coast with my family. It has been about two years since we last went away, and I can tell you we all needed the time away.

However, for me, unfortunately, it was a working holiday. I had deadlines the day we got home and the following day, so that meant spending most of my evenings in front of my laptop while the rest of the gang went downstairs and played a few rounds of pool. Don’t worry, I joined in, though, when I could, however, I have realised I can’t play pool to save my life! figuring out angles and things was not my strong suit at school, and pool is all about angles! Although fun, it brings out the worst in me competitive wise!

However, the one thing I noticed while I was away was my body. Having a progressive disability means that you will have good and bad days. Or even good weeks and bad weeks.

For me, the whole week physically was a bad week. It was strange and incredibly scary to notice a slight decline in my strength, and my back pain or tightness was constant. Usually, as the weather gets colder, my muscles get tighter, leading to insufficient mobility and muscle aches and pains anyway. The thing was the weather was nice and not overly cold, so I couldn’t really put what I was experiencing down to the weather.

Before going away, I had slightly fallen off the health and wellness bandwagon. I was in a major slump and was putting all my time and energy into my studies. I simply didn’t make enough time to stretch, exercise or even just eat well. I fell into the stereotypical university lifestyle of no work life balance and poor health choices. And boy did I pay the price. My body responds the best when it is kept moving and with a high protein diet. The last few weeks (okay months) I have done the opposite; High carb and high fat foods and next to no exercise.

mum is packing down sand with her feet, her back is to the camera and you can see my brother and ocean in the background. There is a nice path created of packed down sand in the foreground
mum mid-waddle. honestly, such a great idea to pack the sand!

The slightest increase in body weight, I can feel just by doing day-to-day tasks; they become more difficult and energy using. Not to mention the tell-tail jeans not fitting and having to do the lay on the bed or press yourself up to the wall trick to get the button done up trick. ANYWAY!

I felt fine the first day away; it wasn’t until we went for breakfast on the second or third morning that I noticed the difference. I decided to walk to breakfast which was only about 200 metres away. My right calf felt incredibly weak, which meant my knee constantly felt like it was giving away, and my back pain/ tightness made moving incredibly challenging and draining.

This was incredibly frightening for someone who could do a 5km only a year or so ago. But I just thought it was only one day as it had been a hectic few weeks which meant the body was fatigued, and it would be fine the following day with a good night’s rest. Usually, any change in routine or fatigue will cause the body to freak out, but it sorts itself out sooner than later.

Unfortunately, the rest of the holidays, making the short distance from the lift to the room which was only about 10 meters was uneasy, and I felt like I could fall at any minute, and I felt like my hips just didn’t want to move which made walking so much harder, and I was trying to hold subtly onto window frames or walls for support

However, it still instils a lot of fear into you. Having a progressive condition that is ever-evolving every few years makes you have to quickly adapt to a potentially new normal, especially if the decline hangs around. Having said that, you still constantly ask the question of whether or not this is how it is now or if it is only temporary because of the decrease in healthy habits and the season change. You hope for it only being temporary.

It all came to a head on our third last day when the boys wanted to go to the beach. I was going to skip the beach and go to the surf lookout in my scooter only a few metres away from where they would be swimming. Because I mean, the swell was up, and the surfers were out in force!

I mentioned this to my folks, and i could tell they were desperate to get me onto the sand.

I didn’t want to upset or cause my family any extra worry, as I knew they were probably really concerned, seeing how much I struggled with the simplest of short walks. The one thing I hate is causing my family any extra worry or unease because the last thing I want to do is give them any reason to be concerned.

So I said sure, I would go to the beach, albeit grumpily, as it was just one of those mornings where I wasn’t in the best mindset… Total Grinch mode activated. I jumped in my scooter to do the bulk of the walk… I parked my scooter behind a sign just near the entrance to the beach and slowly started making my way down the sand.

I know I have probably spoken about this previously, but walking on the sand when you have weaker muscles and walk on your tip toes is incredibly challenging. Sand is constantly moving, so when you are balancing on such a small surface area plus having weak muscles, moving sand creates an extra challenge. Add on struggling strength wise more than normal, and boy does it add more layers of interesting times.

Fortunately, it had been raining the night before, and there was a section close to the guardrail that hadn’t been walked on, so the sand was still firm enough from the rain. I held onto Dad’s arm as I walked to give me extra stability, as well as onto the guardrail.

It wasn’t easy, and I am sure my brother wanted to challenge me even more and set up our towels another twenty meters away from the end of the entrance. Isn’t that what siblings do lets be honest! Thankfully I made it in one piece. Mum even decided to shuffle her feet across the sand to create a little packed-down path for me… Believe you me it was absolutely hilarious watching her shuffle and me and dad were almost in hysterics. I have video of her shuffle as proof!

As I was sitting on the sand later on, Mum asked me what was wrong because she noticed I wasn’t my chipper self. And I said that I felt like I had let myself down by falling off the bandwagon and that I was scared that my body was starting to show signs that it was getting worse and that I felt like I was now back in damage control mode.

me walking on sand holding onto my dad's arm and the side rail, our backs are to the camera
so grateful for my family

She gave me some pretty good advice. She said to me that there is nothing I can do about the past, and worrying about the future does no good either. By focusing on those two things, I am failing to celebrate the pretty big wins and take in the ocean and truly just be present and grateful.

I realised at that moment that I had let go of everything that I had learnt over the last two years. I wasn’t truly taking stock of the things that I was still accomplishing and living inside my head full of anxiety and self-criticism.

I managed to get down onto the beach even with a shotty calf and back pain. I was still able to play a few games of pool after dinner, I was still able to play rounds at Top Golf.

Having a disability that constantly changes presents unique mental obstacles to over come, but the most important one is to remain present and always to acknowledge the small wins whenever they happen, and to truly be in the moment. I don’t know when I may end up walking off the sand and it will be for the last time. So it is incredibly important that I keep being present to enjoy all the things that I still can do.

Having said that though, it is also important to acknowledge how you are feeling about things on any given day. If you don’t you almost live in denial, and toxic positivity is almost as bad as toxic negativity. If you don’t sit and become really conscious of how you are feeling, how can you then work on yourself or deal with things as they pop up. That day I was feeling incredibly frustrated, embarrassed, sad, and anxious. I felt frustrated that my body was playing up on me while on a holiday, embarrassed about my condition, sad that I felt I had let myself down and causing my family extra worry and anxious about what the future. However I was allowing it to ruin all the good moments of that day and time spent with my family! If mum didn’t snap me out of it, I would have not enjoyed just sitting on the sand and enjoying the sun and being in awe that my body was still capable even if it wasn’t feeling 100%…. oh and getting impressive sunburns on my shins…. guess who is shocking at putting on the sunscreen..

I still acknowledged how i was feeling, and put together a plan of attack later than night at how I can do a bit of a reset and get my body back on track. I know what my body is capable of, and how it feels when I am active and eating right. So now it is just a matter of getting back into the swing of things and working through all the things that come with cold weather and muscle aches. I am still amazed at what i can do, and I will always keep pushing to find out what my body can do. When I think about it, I cannot believe I was prepared to allow my disability to not allow me to enjoy my holiday! It just goes to show mindset and where you are at mentally plays a big part in life! I know for a fact it will be okay, its all about taking it one step at a time and getting back into my routines focusing on my health, and finding ways to keep living abled my way. It may change from day to day, but the main this is to just keep moving.

Till next week,


p.s. there is something near and dear to me that I am hoping to announce very very soon! In the meantime! I would love your feedback and any content platforms you wish me to start posting to! whether that be more content on socials (i swear I will get better at that), podcasting, youtube videos (vlogs, sit down chats and q&a style etc) let me know! Safe to say a major Living Abled overhaul is in the works! But I want to know from you which platforms or content style is most important to you! Comment below, on my socials or send me a DM!

1 thought on “Disability Life: Dealing with constant and sudden changes”

  1. Dear Rhi,
    you might have a try on mobility devices like trekking poles or hiking poles. Those should be of profound quality,
    like the ones made by German brand Leki. They will help you moving along if you feel weak and insecure on your legs.
    A (4-) wheeled walker increases the risk of falling if your feet might stumble against the wheels, I don’t think this device is suitable for you.

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