On New Years Eve, I was at the beach in Geelong with my best friend, who we shall call Shelby*. Together we watched the fireworks at Midnight, as they echoed around the pier. As the fireworks drew to a close, we began to walk back to the car when PSTTOOOOOHHHH.
Some cock head decided to shoot a flare.
So naturally, I did what any best friend would. I grabbed Shelby and shouted ‘YOU ARE IN THE NAVY. YOU SIGNED UP TO SAVE OUR COUNTRY’ and used her as a human shield.
To say that this has bought about a fundamental change in our friendship is an understatement. Shelby now eyes me with the same level of mistrust as my brother now eyes Pork Sausages, since the Great Food Poisoning Incident of 2014.
This is the usual kind of flare that is well understood and recognised, albeit one should not have to recognise it as it hurtles towards your head (or your best friend’s head). But when you have a Chronic Illness, a flare takes on an entirely different meaning, and one in which you would preferably take a standard flare to the head rather than have the Chronic Illness Flare.
Flares are different for every single person living with a Chronic Illness. No one understands this better than my Dad, who lives with both myself and my Mum, who is Seriously Ill. In one hour he can have me attempting to choke down a sip of water while Mum inhales the contents of the pantry from Prednisolone cravings. This list is relevant only to my own individual experiences. If you take this to be the Chronic Illness Flare Bible, then I am not responsible for anything that happens to you (including someone shooting a flare at your head).
1) Do not bring me food. By food I mean anything that has the potential to be ingested, even incidentally, like toothpaste. Flares for me mean vomit, and lots of it. Alternatively, it can mean that I have as much control over my bowels as I do over the gravitational pull of the moon. Some people during flares cannot stop eating. I just can’t start. This then spirals into Dad trying to coax bits of mashed potato into my lips and sticking straws up his nose intimating the naso gastric tube that will soon be mine if I don’t gain some weight. And all the while I have Mum death staring me in the midst of her Prednisolone binge.
2) I am probably going to be high. Like, all of the time. I am anti drugs. I have never even smoked a cigarette (Although I did once snort some Wicked Fizz if that counts for any street cred). But the Morphine, the Oxycodone, the Mersyndol Forte and whatever else my doctors want to pump into me are going to get me higher than my standards in men. I would like to apologise for anything I have said, and will say, while I am high. P.s I think I’m in love with you.
3) I will also probably be a bitch. Anyone that knows me would describe me as one of the happiest, easy going people they know.
Until. Until I fall into the Pain Hole. That’s really not as sexual as it sounds, I assure you. When my Mum began treatment induced Menopause, my Dad devised the Menopause Alert Siren. This effectively involves Dad making an air raid siren and diving for cover under a piece of furniture. Having discovered it’s comical value, Dad has now applied this to my Bad Pain Days. I am irritated. My tolerance is at an all time low. I am overtly sensitive to physical stimuli (Can you fucking speak a little fucking quieter?). Lights are too bright, the TV is too loud, and you are guaranteed that you will say or do the wrong thing. P.s Fuck you
4) I am extra bendy. Hormone levels increase dislocations and subluxations in people with connective tissue disorders. Hormone changes also make you a lot sicker. This ends up ensuring that when you are at your sickest, you are also at your stretchiest. At the moment I am in the middle of a nasty flare. Last night I partially dislocated my hip pouring a glass of orange juice. Not only am I vomiting/shitting/swearing/high, I am also probably on crutches and waving my arms around really awkwardly cause my shoulders are popped. I am effectively just an inflatable waving man on Endone.
5) I sleep, excessively. Ask anyone with a Chronic Illness and they will tell you that fatigue is one of the worst symptoms they experience. There are three levels of Flare Fatigue.
1)I cannot shower myself
2) What is life
3) I can see sounds
No matter how much you sleep, you do not awake feeling refreshed. But you cannot do anything else, so you just have to suck it up and know that you are missing out. Which brings me to my next point.
6) You probably won’t hear from me. I am too unwell to meet you for coffee. I am also probably too sick for you to come to me for coffee. I will not call you, and I probably won’t reply to your texts or Facebook messages either. It isn’t that I don’t want to, it’s just that I don’t have the physical capability. Alternatively I am convinced I replied to you and think you are being really rude by not replying…
7) But I still get lonely. Even if I am too sick to reply, to hang out, to speak, message me. Send me a text with a photo of a Golden Retriever, just say ‘thinking of you’, or shoot a flare at my window. Just let me know you are still around, and that when I am feeling a bit better we will catch up.
8) I am behind everything in my life. This means Uni work, paying bills, cleaning, doing washing, showering, medical appointments, socialising, grooming the dog. The sicker I get, the more I stress. The more I stress, the sicker I get. Offer to take notes for me in class, to drive me to a doctor’s appointment or to just visit me for half an hour and play with my dog. I have a cute dog, so you will benefit also.
9) I forget. When you have a flare, it becomes impossible to remember that it will ever get better. I panic, and think that I will never get back on track again. There is no feeling so frightening as believing that you are in an uncontrollable spiral, a flare hurtling towards two women on a jetty, and that things will never be okay. Be there to help me remember. Remind me of all the flares that have come before, and all the ones that I recovered from. Give me perspective, and show me that you remember, even if I can’t.
10) I will be okay. Ultimately, this is the most key point. Sometimes I keep a complication from a flare for the remainder of my journey, other times I don’t. At the moment my vomiting is finally begin to ebb, the lobster allergic reaction rash that covers my torso from ECG dots is fading into a pink, and today I managed to do some pilates. As long as I know that I have you there, flare or not, I will always be okay. Take the hit of the flare with me.