I shouldn’t be writing this at this time of night, but I felt very compelled to do so. Before the sunset, I decided to go for a walk up to the park on my street and around the block since I need to for my health, but to also just get out of the house and into nature and peace and quiet. It’s physically hard but it’s a heck of a lot easier than it used to be, especially 4 or 5 years ago. I couldn’t even walk to the end of the driveway without being absolutely exhausted for days. It’s weird to think how a challenging time in my life has passed and I find that I sometimes forget about what has happened to me. I still have challenges with my health (postural orthostatic tachycardia syndrome), but I have come very far from where i used to be. I follow this girl on Instagram who had a skydiving accident and is paralysed from the waist down but can actually still walk. She said ‘if you can, you must.’ That really hit home for me. A few years ago when I couldn’t go outside and go for walks or go for runs, I would be super bummed about it and thought that if I ever got the chance again to do it without feeling awful, then I shouldn’t take it for granted. Now that it has become a lot easier for me to do so, I’ve forgotten about that struggle and have taken it for granted.This is why I feel really compelled to write because everything that I felt back then is flooding back and i’m quite overwhelmed by it and need to remember what it was like and how far I have come, to really reflect on it all. It’s easy to forget things when the progress has been so slow to where I am now, it’s difficult to see change. 

I woke up at 11pm one night vomiting and I continued to do this every half an hour on the dot for 12 hours straight. It took awhile for me to feel better from that, and that’s pretty much where everything went to shit. I think I started getting a cough, and eventually more symptoms came and came. The worst one was nausea. I had it constantly, especially at night. I wouldn’t be able to sleep, and in the effort to, I’d have to sleep upright because laying flat made me feel awful. I’d go upstairs to watch tv and try and get my mind off it until I felt ok enough to go to bed. This continued for a few years until each day my pillow slowly started to get lower and lower and eventually I could sleep normally without nausea. There was also the constant fatigue. Before this, I would walk to the local school and catch the bus into town for high school, walk around to each class, catch the bus home and then walk home, but that became extremely exhausting. I couldn’t afford to do that anymore so I had to be homeschooled. 

Can you imagine going to school almost every day of your life, surrounding yourself with a lot of people day in and day out, seeing your friends, riding the bus with your sisters, living how everyone else is, and then have that completely stop. You don’t go to school anymore, you live too far away from your friends who you don’t see anymore or talk to, and you are alone most of the day teaching yourself. That was so tough, especially to lose your friends. I had a best friend of 9 years who I pushed away. It felt like I was forgotten because I was at home and they were living their lives going to school, and i’d be home alone all day with no contact with them. You wait for that text all day but it never comes. It’s so easy to forget someone when they are not around, I totally get that, but it’s really tough being in that situation. I felt abandoned and forgotten about but I pushed them away in the process of this, and that was pretty isolating. I quickly became depressed. 

It’s also hard to see your sisters go to the ball and go to parties and do all that normal teenage stuff. Even though they said it was lame, I still wanted to experience that. It’s also hard to go from being with your triplet sisters all the time to being completely on your own all day. 

I was also very dizzy and I couldn’t stand for too long or walk too long without feeling extremely faint and having to quickly sit down. I still have trouble with this, I can’t be in places with bright lights or stand too long. (Last year I went to the Anzac Dawn Service and stood for over an hour and in the middle of the ceremony, my ears starting ringing and felt really light-headed. I then couldn’t see or hear anything and so I had to awkwardly crouch on the ground so that I didn’t faint.) I just couldn’t walk anywhere without feeling dizzy or tired so I had to use a wheelchair, which was really old and my mum had to push me around. I was so short and irritable with her because I couldn’t physically move myself where I wanted to go or have an independence; I felt like a child. I was quite embarrassed to be in a wheelchair also because I looked fine on the outside when I really wasn’t and people were confused by that, or people would judge if my mum parked in the disability park and they would question it. An old man said ‘do you have a permit?’ and when I said yes he said ‘are you sure?’. Apart from being pale, I looked fine, I had all my limbs and my hair, I wasn’t in a cast, I didn’t have scars. This I still struggle with because people say I’m fine or I should just do yoga, when they don’t know how I actually feel. Walking to get groceries is a fucking mission. I’m so exhausted from the hills here in Wellington. My heart really can’t stand it. I dread it every time I have to go and get them and I look like i’ve run a marathon when i get through the door, heaving with a red face. I just lie on the floor until I don’t feel dead anymore. 

I did have some great things come out of this. I had a pen pal which kept me sane, I would write (bad) poetry on my Instagram, I ran a blog where I’d basically just ask companies to give me free shit and then blog about it. It was the best getting mail because it was something to look forward to. I also just have so much empathy for others and I want the best for everyone, and I wish I could just know exactly what people are going through or feeling so that I can help them, because I know what it’s like to feel so depressed, lonely, isolated and struggling. I really do not want that for anyone. 

I just needed this time to reflect because it is so easy to forget as time passes and take things for granted. I want to make the most of what I can physically do now because I could do very little before and I have improved a great deal over the years. I went from being able to walk 30 seconds down the driveway to slowly building up to around half an hour, depending on these bloody Wellington hills. It’s still a mission like I said, but I can do a lot more, and I should be thankful for that and utilise what i have because there are people out there who have it worse, and who would wish to be in my position right now. I am very lucky to be where I am right now and this was a great reminder. 

I don’t want anyone to feel sorry for me, I just want to tell my story and to encourage others to be aware of how far they have come and maybe reflect on what they have and what they could be thankful for.