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Chronically "Dys"functional

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22.01.2022 So glad to see the back of 2019 after spending almost half the year in hospital again and battling everyday to get back to where I was. This past decade has been bloody awful for me overall so I’m super keen to put it behind and start a fresh one!! Happy New Year everyone - 2020 is going to bring good things, I just know it!

17.01.2022 Yesterday I ventured out into the world for the first time in weeks for a portion of my treatment that I can’t do at home and can’t do without. It was with much trepidation I left my space and ventured into a place I know is a hotspot for sickness, including the current worldwide contagion of covid-19. In all my years of hospitals I have never felt more apprehensive about going in as I did yesterday. I won’t bore you with the finer details of my trip, but I will say this. Ou...r healthcare system is under a huge strain right now and what I witnessed yesterday, I could not fault. The staff were doing everything to the best of their ability whilst trying to protect themselves and everyone else. They had extra processes in place and were taking obvious and practical measures to ensure the safety of all. If the hospitals and their staff can do this under the surmounting pressure, the least we can ALL do is our simple part to protect each other, ourselves and our loved ones and Stay Home, wash your hands, practise social distancing and self isolation where recommended. I am one of the very many immunocompromised and immunosuppressed people who are relying on you to play your part in society. I am also a sibling and daughter to family members who are all working in essential services at this moment, with all 3 of my siblings in healthcare. They can’t stay home, they can’t visit me and they simply cannot do their job if we don’t do ours. This is a scary time for all, including those on the frontline in all capacities of that meaning. They’re all playing their part in preparing for the storm and preventing it from fastening, so the least we can do is play ours. Times are only going to get worse so please remember that now more than ever blood and plasma donations are needed. If you get a chance and are looking for another way to help please consider donating!! It literally saves lives and who knows who will need it next, it could be someone you know. Take care xoxo

16.01.2022 FOUR months in hospital has officially passed and there’s nothing much to say except, it sucks. That’s another third of my year wasted and gone spent fighting my body. Time that I’ll never get back, stolen forever just like the times before. During this admission I have been through some of the hardest days I’ve had, and also some of the loneliest and darkest. People say that you get used to things that you’ve experienced before but I can’t say the same for time spent in hosp...ital. Yes, some things are the same with routines often similar, but the actual experience of being stuck in the 4 walls of a hospital room whilst having your life being discussed and dictated around you by people who barely know you at times is something I will never get used to. With new teams and new wards there’s no built up trust, there’s no true understanding of your situation. Everyone wants to place a piece of your bodies puzzle together but few actually understand or see the picture to begin with. Today I am so over it. Sick of hurting, sick of waiting, sick of being sick and simply just fed up. Nothing anyone can say or do will make this better, it’s just a process of healing over time and freedom from this place. I try to stay positive but sometimes I don’t feel that way. Sometimes things aren’t all okay and no amount of positivity can change it.

09.01.2022 What is worse than feeling powerless? I’m sure you can think of many things, but right now I can’t think of much. After almost a decade of navigating the health system, dealing with the ups & downs all while trying to just get some semblance of a life back, things never cease to surprise me. When you have a really rare disease that has little research surrounding it & few people who truly understand it’s workings, you feel like you’re constantly waiting for the next new per...son to step in and make assumptions & decisions about you or your care, which they know nothing about. Because treatments are not as well researched nothing is ever certain and you constantly feel like the rug could be swept from under your feet & a snap decision someone makes could destroy your life. I wish this wasn’t the case and I was being dramatic, but this is a reality for myself and many others with rare/uncommon diseases. Perhaps this reality shouldn’t be as jarring anymore, but it always is to me. Now, after a number of relatively ‘calm’ years in terms of having had a solid team of Drs surrounding me, a key one is leaving and so the turmoil, nerves and uncertainty begins. Will the new replacement understand my condition? Will they keep my treatments that have been working well for years and given my life out of hospital back? Will they destroy my life with a simple change of heart or inability to comprehend how my body works? Will they see me for who I am? Will they deem me enough to actually care about? And while all these thoughts swim in my head I find myself powerless. I can’t just call the new Dr and plead my case, I can’t will someone I’ve not met to understand. I can’t educate them because how could a patient know more about their condition then a professional. I am completely powerless. My future life and health rests on the shoulders of someone who I’ve never met and will not have the opportunity to meet until after a decision that affects my entire life has been made. Feeling so powerless in a situation that could significantly alter my life feels so unfair and seems wrong, yet I need to remind myself I am not the exception here, but the rule. Many people experience this sense of powerlessness everyday in the healthcare system and possibly in far worse scenarios than mine. As I sit here thinking of my unknown future and that of others in similar situations I want to scream and shout and be heard, but there is no one to listen. So I wait. I wait for my future to be decided for me, based off a few pieces of paperwork and no actual contact with me. I wait in hope that this new Dr will have the skills to listen to their colleagues, know & be humble of their own limitations and have empathy for someone who they have never met. Why am I rendered so powerless in a situation that matters more to me then anyone else in the world. Something doesn’t feel right here...

06.01.2022 It’s the last day of dysautonomia awareness month and as much as I intended to do some much needed awareness posts, I just haven’t been feeling like doing so. Don’t get me wrong, I care about raising awareness, especially when I think of my journey to getting a correct diagnosis of AAG. But right now an upbeat awareness post is not coming as easily to me so this will have to do. This year my body has shown me how suddenly and quickly it can fail me. Nearly 5 months in hospit...al is a testament to that. Now that I’m home and slowly doing better I should probably be feeling okay and positive but I find myself feeling ripped off, behind and frustrated again. It took so much work to get to where I was in January and now it’s taking a hell of a lot to get back there and I’m not even close to where I was physically or emotionally. But....the thing is, that is the nature of the beast I guess. Dysautonomia is not consistent and it’s not a one way street. It’s hard for me to keep up with some days, let alone anyone who’s not living with it. It is isolating, discouraging and perhaps the most difficult aspect of all is the judgment faced because very few people truly understand what it’s like. None of the conditions that fall under the ‘dysautonomia umbrella’ are well known which only amplifies the struggles that those affected face. Hopefully with more time, awareness and research things for all dysautonomia patients will improve. See more