Like a hoarder on steroids

Travel and preparing to travel is not a simple task anymore. 

I've never been the lightest packer but now there are even more necessities to pack, I have no choice but to pack like a hoarder on steroids. It's embarrassing! 🙈

But the exciting part in all of this is that recently I actually got to pack to go stay somewhere other than the hospital. Fun times!! 

I have a list saved in my iPad of everything I need to take for hospital admissions and I have perfected it down to the smallest details so I don't forget anything. It's a pretty exhausting and boring list but the good thing is I don't need to pack the medical supplies stuff or medications, as they're supplied by the hospital. When going anywhere else, I have recently discovered there is a lot more to packing and preparation involved in moving my little life. 

For a less than 24hour period of time away from home it took days of planning. 

Writing lists of what to take

Organising medical supplies to take with us

Organising enough medications and enough 'as needed' medications for unexpected or increased symptoms

Calling the accomodation ahead to let them know my physical disabilities/requirements

Organising the appropriate room with disabled access for my wheelchair

Making sure that the equipment I need will be available at the location

Checking on parking so we don't have to go far when we arrive sick from travel

Making sure that we are located close to the place I am going 

Double checking I haven't forgotten anything

Triple checking I haven't forgotten anything 

And so much more.

It's actually quite exhausting and honestly a bit overwhelming. I had a fast, fleeting but very enjoyable time away for my night and I'm so glad I got to do it thanks to my muma bear for taking me. We had no real mishaps and things went as smoothly as possible, which was really positive and gives me hope that one day, these little trips won't be such a big ordeal for me and my family in the future. 

For now though, things like this trip are the ultimate luxury and something I am quite proud of achieving. To stay anywhere but in the hospital or in my fully equipped home with all my bits and pieces is something that was far beyond an achievable reach until now. The reality is it is probably a long way from becoming a regular occurrence but knowing I could do it makes all the difference to my outlook. Although it takes time, planning and meticulous examination of details, it brings me one tiny step closer to living a semi-normal life. 

A far cry from 2009

Yesterday I had an important appointment with my neurologist whom I see regularly and is a vital part of my team for over 6 years now. The thing about this particular appointment is that the hospital is located right next door to where I used to live. Prior to illness I had some of the best 3 years living in college at my university, about 20metres from the hospital. I am so glad that I had this opportunity to live there and to look back on, especially yesterday.

I have been to this hospital many many times but for some reason or another, yesterday felt different. Maybe because I was outside longer than my usual whisk in and out of the hospital or that I was not on an ambulance stretcher or some other unknown reason but it really got me. It is a strange feeling looking back on my life when everything has changed so much. I would never have imagined being at the old stomping ground in a wheelchair or on an ambulance stretcher. I would never have imagined that I would spend years after college returning to its doorstep yet being in an entirely different capacity. 

Epifony is the wrong word, but yesterday really cemented just how different my new life is. It has me mourning the loss of my old life. The little things like the many late nights strolling back to bed after parties, the early morning car trips to my uni campus, saying hello and seeing mostly all familiar faces in the street, going to the gym, wandering home from the local pub 'the gross', thai & other delicious foods, looking out my windows people watching, parties, cocktails and more parties. It was so much fun and something I took for granted at the time. I miss this. All of it. 

As I reflect on my situation and the life I lived pre-illness, it is amazing to see how all of these adventures and pastimes have changed.

Alcohol has been replaced by water to maintain blood volume to increase my blood pressure and stay conscious.

Thai & other authentic foods replaced with simple foods that won't upset my stomach & intestines due to my gastric nerves not working properly.

Strolls along the road now replaced by hours in my wheelchair trying desperately to regain physical function.

Familiar faces have changed and now consist of the nurses, doctors, allied health and hospital staff I see often in the corridors.

Cocktails are no longer fruity and delicious, replaced by huge amounts of tablets & other medications each day.

My gym is now that of my rehabilitation unit, where it feels like my second home.

Parties are now few and far between and my usual evenings consist of nurses coming to my home to help with all my nighttime requirements and being at home with my family.

So much change. So different. So unimaginable. 

But amongst missing all of my old life, I do really appreciate the life I have. I will never be one to say that I'm grateful for this illness and conditions or 'everything happens for a reason', as I flat out don't agree, but I do think that my family, friends and support systems have done a great job at helping me make the most of this life, given my current situation.

Even though my reminiscent adventures are replaced by less desirable alternatives right now it's not all doom and gloom. It's always about perspectives & how you choose to view situations. For me, 

 My medications have made me appreciate how intricate and fickle the human body can be and have helped me to survive and be as healthy and safe as possible whilst my body fails me.

My rehabilitation is continuing to allow my desire and dreams of better days to be possible, because I have the opportunity to continue rehabilitation and I have people who believe in me and want me to succeed. I have help when I need it and guidance when I am unsure, I have a second family. 

My home nurses allow me to live at home with my family and be cared for when my family cannot, potentially saving me from residential housing or huge familial burden.

My parties may not be raging or late nights but the time I get to spend with my family every night are irreplaceable and worth more than any old party. 

Yes I miss my old life, but crying about it 24/7 isn't going to bring it back. Hell, I do cry about my situation and I feel sad that things turned out this way. I have days that feel like they don't warrant the hassle and times when I am so disappointed in my body, but I also know that if I stay in the realm of sadness it will do no good. 

Just got to roll with what I've got.

So to my pre-illness life and the good old days, I miss you SO very much. Thankyou for the experiences I had and the fun times I will never forget. To my new life, you're not perfect but we will just keep working on bettering you...