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colitisandme · 3 years ago

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Apocalypse

We have all seen many end of the world movies. The heroine and hero of the story, striving desperately to rid the world of darkness in order to survive and uphold the good and light whilst the world implodes around them…. I don’t know about you but its all feeling a little bit apocalyptic-y (Jessism – patent pending) at the moment, isn’t it? That’s not to be dramatic…. But in the last year and a half-life as definitely changed as we know it.

In the past year… I must admit due to my own vulnerabilities, I have avoided most people with a face and eyes because I have been hiding in my own bubble with my fellow ‘bubble buddies’ (my husband and my fat hoppers) generally peering at postman through my letter box and picking up parcels with extendable tongs at a 12 ft distance and avoiding eye contact with the general public. When you were younger do you remember stories about monsters living under the bed? … Well, I thought if I put my feet on the floor, my Monster was going to lick my toes, bite me, reach out with its long furry arms, grab my feet and drag me under the bed, to live forever with the poor odd socks and crusted tissues under there. I also thought that if I didn’t turn off all the electrics in the house, then a monster would come out of the electrics and lift me up to the ceiling…. It became a re-occurring dream/ nightmare I used to have, and because of it, I genuinely developed a fear of the toaster if I left it on in case it developed arms, and picked me up, shouting at me because I would dare to leave the electric on. I honestly think my parents saved a fortune in their electric bills because I was so mindful. Thank me later guys. Not really a surprise I developed anxiety thinking about it… maybe that was the start of it. But although these are ridiculous notions – monsters with a foot fetish and electrical appliances with limbs…. These were my fears. They were very real and effected my life.

Now we are all dealing with a monster. But a much bigger monster, and that feeling I had when I was young is creeping back. And I bet a lot of others are feeling the same as me. Because its one thing, going out, to work, and into general society, armed to the teeth with sanitiser, masks, and enough antibacterial spray to take out a small portion in our ozone layer, with no health conditions, vulnerabilities, or health foibles. Its scary enough having to deal with it when you are healthy and springy. I guess people weigh up their own risks when it comes to making their own boundaries aligned with the guidelines set out. However, for someone like myself and many of my health warriors…. The world becomes a much scarier place. Everything is risky. Even going for a walk has risks. I am not proud of this, but this monster has made me develop a heightened sense of suspicion and ninja like reflexes…. A few months ago, myself and my healthy. nubile and springy husband went for a walk –Now Kyle has the immune system of a rampant bull … nothing seems to affect him which is useful when he has a wife who has the immune system as reliable as a chocolate teapot. He does Crossfit, he has actual muscles not spaces where muscles should exist like me where sadly an IOU exists is in its place. He eats sprouty things voluntarily daily. He likes smelling like a bin when he exercises…. Meaning that the next time I have to go in the car I have to wear a proverbial gas mask and hang my head out of the window like a dog to try and escape the smell. There are a few subtle differences between us. And on our walk, one of the first we have had as I have been living like a hermit, there were several groups of people on our path, talking, laughing and conversing… not social distancing and not wearing masks and as we approached and it became apparent they weren’t going to move, I became like a limbo ninja… twisting, curling, and squeezing myself past this group, all the time going purple from not breathing and trying not to fall over as I was waving my hands above my head looking like a ridiculous arm flailing inflatable tube man.

I know for some that is an absurd reaction, but for me it was totally reasonable and justified. The world at the moment, for those who really have to protect their immune system, health and general sanity, is a very scary place. And at any second a monster could find me and lick my toes just like I thought he was going to do when I was younger. I didn’t go to the supermarket for months… nearly a year. Whenever Kyle went out, he must have looked like a bank robber as I had him wearing a scarf up to the eyeballs, gloves, hat… everything. The first time he went out, he said people avoided him like the plague, which didn’t surprise me one bit, when they probably thought he was gonna whack an old lady on the head with a club, and leap over the counter and start demanding a poor, sweaty, shaky cashier to fill his swag bag with money…. It’s not the ideal look but Mission accomplished, and it was purely out of fear. Not only was I seeing people I loved and knew who were healthy getting mowed down like soft grass by this monster, I was desperately frightened that if the Monster suddenly found his way into our bubble, kyle was in danger and I could be in a serious amount of trouble. My genuine fear was that my lung nodules, colitis, fibro and goodness knows what else residing in my body, would all get together, and wave the white flag as the monster slithered its way into my body, made camp and chomped its way through my lungs. And I am gonna be honest, even though I have now had 2 jabs and slowly but surely, we are easing our way out of lockdown, the Monster is still there waiting. Kyle has only had one jab, ridiculous when he lives with someone vulnerable, and I have got to admit that sometimes the notion of going out still makes me want to spray members of the public with disinfectant and shout ‘stranger danger’ at them until they back away from me.

Where chronic illness has proved isolating, Chronic illness plus Monster has just become the icing on the cake. And I know I am not the only one who feels like this. I talk to so many wonderful, feisty, determined, bloody amazing chronic illness warriors whose mental health has so much been impacted by this Monster. By keeping ourselves safe, we become more alone and, on those days, where you are in so much pain, discomfort and fatigue you want to chew your own arm off, it is so, so vital to have those distractions. Distractions like people, conversation, interactions, getting out of the house, doing things that are fun and nourishing for your soul and general ness. They become part of our survival guide, and when it is taken away it is very easy for our own Chronic illness Monster takes over and lose all sense of self and as such that after a year has now passed it is very difficult to now hop out of the house with care free abundement (Jessism 2) full of joys of spring time, with rainbows in my heart and a pocket full of dreams. This Monster has left scars on us all. Whether it be financial, medical, emotional, mental… lives have been lost and lives have been changed forever, and for those of us already dealing with scars from our own Chronic illness Monster, are now dealing with the pressures of feeling safe again.

Leaving the house, going to work, travelling on a bus, going to the supermarket fills me with the heebie jeebies. We don’t know what is safe and what is not. Who is safe and who is not. Who has had jabs, who has self-distanced, who has followed the guidelines and who has not. There is no test we can use to find out that information, no detective skills we can implement. Its pure chance, scary, scary, chance and the results of that decision, bear serious consequences for us and for our families. So whilst I would never tell anyone what to do, please think about how your decisions also impact on the rest of us. There is no flashing beacon to notify you we are vulnerable, no one follows us around with a foghorn or a flashing alarm, we don’t have a inflatable zorbing ball we can get into to keep us safe. We just don’t so please, please be mindful. The amount of people who have said ‘the vulnerable can stay away from the rest of us’ fills me with anger. Unless you want us our Mental health to dwindle away to nothing then no, no we cant and it is unfair for us to do so. Would you do that? Would you be able to do that if you were vulnerable? Then don’t ask us to do that. You have your choices as do we.

So, when you go out and you see one of us, still wearing a mask, social distancing and generally trying to avoid eye contact with you, its not coz we are weird, antisocial or have infectious fungus… it’s because we are genuinely terrified that the wrong move may cost us. Those decisions weigh heavy on our hearts and in our minds and they hurt. It may mean that for a while we miss some occasions, we don’t say yes to all of your invites, we second guess ourselves when we make medical appointments, we may seem more distant. Please go easy on us. Please be mindful and do not judge, be kind and respect our decisions. We still love you its just that like my past five-year-old self we are still trying to avoid the Monster living underneath our beds waiting to bite us and drag us into the dust and darkness.

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