So just into my 2nd week of being home from hospital and things are going ok. This week I commence my outpatient therapies for rehabilitation to get me going again. Don't get me wrong, I'm really, really happy to be getting back into it, but I'm also feeling quite bleak at the fact that I have to re-join my medical merry-go-round.
I've laid here tonight thinking how good it has felt to be away from the medical merry-go-round for the last fortnight or so, but truth be told I have not been away nor has my merry-go-round stopped spinning. For whatever reasons, I feel like I've had a complete break and seen no one in the health profession for ages. In actual fact though, I've seen a specialist urologist, my GP, had phone contact with my primary consultant, constant contact with my pharmacist, had a registered nurse come to my house to perform a small procedure and I've had home carers & nurses everyday; day and night.
I have not escaped the merry-go-round at all so I don't know why I feel like I've had a 'break'??
Reality is I'm now on a different version of it. Instead of a carousel of countless horses, I've switched onto one of miniature ponies...it feels calmer and sweeter but really it's going at the same speed, with the same colours, with the same music, with the same movement and all together, an identical orbit. A round and a round and a round.....
When I stop and think about my life there have been many fleeting merry go rounds, be it years of studying for the one degree, working a variety of casual jobs through school and university, or moving out of and back into the family home. These have all been rides where i have jumped on for a time period and gotten off once the ride had ended and i was ready. These merry go rounds have served my purpose and have been rides that have provided me with consistencies and constants in my life. They have kept me on the appropriate paths and built stamina and drive. Unlike this, i currently find myself so desperately wanting to hop off and move onto another ride but simply can't stop spinning around and around.
In all of the merry go rounds in my life prior to this medical one, I've had choice. I could stop studying if I wanted, quit work, choose a new favourite colour or clothing item, I could do whatever I wanted and I had the total liberty of doing just that. Now though, all I want in life is to get off this medical merry-go-round. I want to stop the ride, remould my life and start back where I left off in 2010 prior to illness.
On my medical merry-go-round I continue to go around and around and around like a clock in forward motion, never stopping, no option to hold time or deviate from the path. It's draining and emotional and is a ride that will forever change my life.
I'd give anything to jump off if I could.
While the rotation of my merry-go-round remains the same, the colours on it change daily. It can go from being painted a bright yellow & cheery colour to the deepest darkest black ever witnessed. This is all relative to the people I encounter, how I am feeling, feelings of others around me, my emotions and what the mystery of each hour of each day brings.
At home my medical merry-go-round feels more distanced from me, like I'm on a mini-break. The sad reality is it's just the added distractions which give the elusion that its slowing down or changed.
Tuesday my medical merry-go-round re-awakening went something like this...
Today was my first day back at the hospital for outpatient treatment. The morning started as any other at home. It wasn't great but it wasn't terrible. I had my 2 nurses show up to get me up, showered, cares and ready for the day so that's always a good thing. We got me organised for the day which included getting my meds sorted, packing a bag, putting together the supplies I needed to take 'just incase' and other insignificant bits and pieces. Once I was ready for my trip to the hospital the nurses left and my next part of the journey began.
So I got in my wheelchair and my sister loaded me into my big blue Kia which is a wheelchair modified vehicle and off we went. My sister took me today as she was available to help out which was great, as it meant I saved more nursing hours for longer & more challenging days. I got into the car and we travelled the old faithful bumpy road to the hospital, where I continually passed in and out of consciousness and became more nauseous by every kilometre. Driving along and getting closer to approaching the hospital started to make me even more dizzy (if that's possible) and my feelings were mixed. I want to get better so I'm happy to be here, but what if this medical merry-go-round never stops?
We arrived safely but personally exhausted and nauseated from the trip of the usual countless loss of consciousness episodes. As soon as I roll into the hospital doors I see faces I know everywhere who greet us. The kitchen staff on their break say hi, the nurses on the opposite ward to mine wave whilst on their morning tea break, the OT aide chats to me about the latest bachelor (he's a mighty fine specimen btw), I run into the wardsman and we talk about how fast my chair goes and after avoiding saying hi to Ward Hope today, finally I reach the nurses at my day hospital ward where we smile and exchange pleasantries. I am grateful that they all make me feel 'at home' but my heart inside is breaking as this is not my home or the life I want. I want off the merry-go-round now.
I then had my first session with my new OT and a physiotherapist I've known for years. Today's session involved sitting. It was to practise & evaluate my sitting balance with my feet over the edge
of the bed and no back support. It was super difficult from a physical aspect as I could feel every abdominal muscle flickering on and off and my core and back strength struggling to keep me upright-ish. I sat there for the longest time I have sat for over 7months. Of course not continuously sitting as I was passing in and out of consciousness every 20-45seconds, but it was great! 😊
In order for me to sit properly I had the physio at the back, who is used to catching my neck every time I lost consciousness & go all floppy, and the brand new OT supporting me from the front and correcting my posture, all whilst trying not to look completely dumbfounded at my "unique" condition which was clearly freaking her out! I'm so used to people going "oh wow, I've never seen anything like this" that mostly it is not meant as offensive or rude, I find it's hilarious watching peoples reactions to me - after all if you don't laugh you'll cry right!?!
After my session I had my beer goggles on and so was driving my chair zig zagging along the corridor whilst trying to look composed. I felt off my chops but hey it's a hospital so who doesn't! Meanwhile, 'Evelyn' just laughed with me and steered me away from the walls closing in on me
(they were I swear)! I recovered a little, took my tablets, did not vomit (score), got slightly better vision and got loaded into the boot of my car for the trip home.
Once we got home and settled we had delicious wraps for lunch, and yes I'm still marvelling at the food options outside of hospital! By now I knew I had to get catch up drinking fast. With my autonomic conditions high fluid intake is a total must. My blood volume is lower than the average person so each time I stand up, sit up or put my legs over the edge of a chair or leave them hanging my heart has to pump super hard and much faster than normal (tachycardia) to try and get some blood to reach my brain and not starve it of oxygen before I pass out. The less I drink in a day negatively effects me alot and causes me to lose consciousness more easily. It also prevents some of my drugs from working effectively and never-ending track records of kidney & other infections, dehydration and exhausting fatigue. Fun times and all very familiar experiences since being on this medical ride. Ugh.
I slept. I was so exhausted after Rehab that my body just wanted to lay down and rest. I really hate the fact that so often my body is dictating my life. I had a number of things to do in the afternoon and I did none of them. When I woke up I was flicking through my phone and came to a text message
from one of my amazing best friends Miss M. This message was typical of her kind self just checking
in on me to see how everything is going. We got texting and then she asked about what's on for me over the next few weeks. I started to write back 'not much on, just hanging at home' but as I was typing I found myself deleting the message and starting over with the truth. The truth is that despite my homecoming and temporary feeling of escaping on a break, this medical-merry-go-round is spinning at its typical pace at the moment.
I looked through my phone calendar and notes and was just defeated. The rest of my week involves;
-making an appointment for a scan
-another appointment for an ultrasound
-having a small procedure
-getting my medications sorted for the week with the pharmacist
-another outpatient visit to the hospital for therapies
-a course of internal injections by my specialist (Ouch!!!)
-a GP appointment
-formulating my next roster for the nurses
-leg exercise and core training at home
WOW. How sad. And that is literally this week. I won't mention the week to come I'm a fortnight as it's just depressing! As I was writing this I was sad. Not because I feel sorry for myself but because this medical ride is stealing my days. I looked at my week and noticed not one thing on the list was outside of my health. From when I first got sick and still today I refuse to let my illnesses define me, but on paper it appears it is winning. Around and around this viscous circle I go...
So bed time came and my mum helped to sling lift me into bed. All my medicated topical stuff is applied and yet another round of medications swallowed and drank. My bedrails, leg splints and overnight equipment are reconnected and put on and the day is over.
As I type this out its late in the night and I find myself reflecting on the experiences of today. This morning I was entertaining the thought that I had been on a break from this constant battle. For a moment life didn't feel like I was engulfed in amongst the horses and ponies of my medical merry-go-round. It was a nice thought but right now this is where I am and probably for a lot longer, spinning around and around on my medical merry-go-round.
Someone once said:
"Would you like to know your future?
If your answer is yes, think again. Not knowing is the greatest life motivator.
So enjoy, endure, survive each moment as it comes to you in its proper sequence -- a surprise.”
Personally, not sure that I'm so fond of All surprises. Regardless, I will continue to survive each moment and be happy to have a dream for my future - a dream to be better. That will continue to be my life motivator.
xoxo
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