#and when my grandma brings things up I automatically assume shes mad and start immediately apologizing

[disturbedheart]

The thing about working is that I've learned and have to still do more learning about how to interact with people and communicate. A lot of the time I'll automatically assume I'm being accused of something (because i always was growing up for things I literally never did) and so I respond with a huge fat attitude or just stare angrily or try to explain myself way over the top when in reality they were just asking and there was no blame. It's always like an okay, well if you didn't do it that's fine just do it now 😭 and if you did do it then oh okay! They take my WORD FOR IT? AND ITS TERRIFYING. You're not gonna make me argue my case only to call me a liar like my dad???

[colitisandme]

Firstly Hi again. I am sorry I have been absent for the past few months. Truth is, I have been feeling rougher than a badgers arse and keeping myself away from people with eyes for their own good. The last few months have been particularly tricky to navigate after my last surprising hospital stay. It did not go well. But I wanted to start this year off by doing a year in review... looking back at what’s happened and try to find a Kum by ya moment in a sea of well of just waaaaaaaaaaaah and arrrrrrrgh! So journey with me through the past 12 months of life, love and quite literally the pursuit of toilet roll.

I greeted January with a hi five and with eternal optimism of what this year could bring, “ This was going to be our year” we said with proud and happy voices, only later sadly discovering my optimism had clearly been marinading in all the new years alcohol, and so drunk, incorreherent and nearly blind stumbled into a ravine where it bobbed about helplessly in a sea of tears before plunging into the abyss. Ideal.

In February, Phyllis Fibro barged her way past my defence system, and squeezed her fat behind into my life and with no warning announced she was going to be here for the duration, turned my limbs to jelly, gave me chronic insomnia, ate all my happy snacks, and let her cats scoot in the trifle of my life. Phyllis is like the relative who turns up for a ‘short surprise visit’ sets up camp in your spare bedroom, deletes all your favourite shows off your tv planner, eats your food out of the fridge, steals your favourite clothes then proceeds to stretch them out and give them back to you when they look like overstretched scrotum... all the time finding new and inventive ways of irritating you on a daily basis. That short stay turns into you finding a truck has turned up at your house bulging at the seems of boxes, clothes 13 clothes horses, giant ball of string, bag of costumes for cats and a yearly subscription to ‘football hooligans and where to find them in your neighbourhood’ in your name. We are not friends, I do not like her and wish she would vacate my body as there is simply no room for her and I think her merely being there is catapulting useful stuff out of my ears and filling the space they used to be with goo. I am sure she takes great delight when I try and blindly grasp for the correct word in a sentence and sweating and stammering exclaim ‘ it’s very nice to meet your umbrella/ sandwich/ watering can’ when I meant to say BROTHER. I am sure she cackles heartily whilst they back away with panic on their faces ... it’s an ideal way to make friends and influence people.

Due to the fact Phyllis was turning my brain, legs and general well being into jelly, I was given medication.... have you ever heard your own heart beat? I have. I have also had the pleasure of replaying the lyrics to a Mcfly song in my head for 8 hours straight.... (am 35 years old and so teen pop should not be the automatic thing my drug induced brain turns too) and had a continuous plot line to ‘How I met your Mother on’ repeat.... These are not brilliant side effects to have at 2 in the morning whilst your husband is blissfully slumbering away in the background and your so tired that you want to chew the pillow and cry. So after several weeks of this, it was decided by everyone within a global radius that that particular medication was not for me. Probably for the best as it felt like my heart was going to explode out of my ears and my pupils were the size of saucers. But after they removed it I realised was just going to be little me vs Phyllis, a battle still going on to this day.

March/April brought the beginning of Lockdown and that endless pursuit of well-being, equilibrium, sanity and toilet roll. A shopping trip was like witnessing snarling animals over a territory dispute...strangers with eyes staring, yelling, barging, arguments over who had the bigger trolley every time we want to a supermarket... People scrabbling to get that last pack of baked beans, bowling grandmas down the isles, sending shoppers flying like bowling pins, climbing over children, ripping open packs of spaghetti then proceeding to stab people’s eyes with it, just to get the last bag of cheesy snacks on the shelf... incoherently grunting at the cowering till workers. Like a scene from Shaun of the Dead. I hoped that a crisis would bring out the best in us, that we would all come together and support and look out for our fellow man but no such luck there. And when you are already battling several illnesses all trying to set up a commune inside your body, the thought of going out into the madness that was unfolding all around us was terrifying.

June/July/August was the summer of isolation. Now I deal with isolation on a daily basis but even when your illnesses do a fabulous job of isolating, you find things, tiny things to focus on, enjoy and look forward to. First good thing in this period of isolation, was that I found out I was nominated for an award FOR MY LITTLE BLOG!!! (Victory cookies, trumpets sounded, woo hoo noises) This was a huge surprise and completely awesome. I was so blessed and felt incredibly honoured to even be considered. I truly think that this was one of the proudest moments and achievements in my life and it’s something I remain hugely proud of. Secondly early during this time myself and my dear friend who runs a hugely successful FB group supporting those who have Microscopic Colitis, decided we were going to come together and write a book about living with Microscopic Colitis including my blogs and stories. This makes me go eeeeeeeeeeeeeeep and almost wee myself with excitement. We can’t wait to put it all together for you all. And thirdly my very clever, very awesome husband had passed his last ACCA exam (Yaaaay) and our bubble was holding strong, Me and my husband were adapting to lockdown life and enjoying our time together. All was good.

For a few months, I ignored my raging body, put my fingers in my ears and loudly sang ‘la la la la’ everytime one threatened to ruin my day... ‘I will just try harder’ I would say or ‘it’s not effecting me’ or ‘it’s not beating me’ ... blindly ignoring the fact that my body was screaming at me... because I am stupidly stubborn. I refuse to let anything beat me... especially illness. However an unfortunate event happened around this time, and after it happened, my illnesses must of all had a pow wow, came together by torchlight and all decided that with no warning they were going to barge past my defences, clobber my Arsenal, scratch their eyes out tromp up and down my body yelling “Na na na na na we told you so” in my ears, whist Phyllis stomped on my limbs. She then got out her mallet, whacked my hands so they blew up, and then proceeded to harness her artistic side and paint my hands blue just coz she thought regular skin colour was ‘so last season’ and using a giant straw sucked all the colour out of my face. Miss Anxiety who was usually fairly quiet in her zen garden of peace, decided now was the perfect time to start learning Death Metal music without wearing earphones, whilst reading me my favourite novel ‘100 reasons why you failed’ at in oppertune hours of the morning. Slowly Colin the colon began blowing himself up like a balloon, and built a giant wall so I couldn’t poop and I shook like a vibrator on setting 4. And I couldn’t stop it... it completely swamped me. All that ‘it doesn’t matter it’s not beating me’ was hogwash all the ‘you’re defying what you should be doing’ from my doctors went out of the window.... I was struggling and I knew it and so did my body and once more I had nothing outside my little bubble to distract me from it.

Which leads me to the worst 3 months since I first had the symptoms of Microscopic Colitis and Colin the Colon began behaving like an uncooperative toddler hyped up on sweeties. I kid you not. Brace yourself.

Now firstly I want to firmly state I am used to pain. I am aware that It’s better to be used to daisies or marshmallows, or stroking puppies but sadly I am used to pain. Phyllis gives me a lot of it on a daily and nightly basis. I also have a high pain threshold. No honestly I do. I can be stoic when in pain. Which is useful. You won’t often know I am in crippling pain unless I tell you. So when I say September was the month we refer to as ‘agonising pain month’ you can be sure it really was. A niggle in mid September, which naturally I ignored, turned into ‘HOLY CRAP WHY IS THE DEVIL DOING A CAN CAN ON MY BACK WHIST INSERTING HOT POKERS THROUGH MY SIDE??’ (Insert 39 creative swear words) I tried to go to my happy place which was replaced by fire and knives, deep breathing techniques, which when applied felt like I was breathing in acid’ and positive thoughts were replaced with demons in a conga line singing a rousing rendition of “boiled and roasted, lightly toasted, fricase and lit and flambéd” in unison. Cue paramedics, more swearing, being sent to hospital via ambulance, sucking gas and air, been given a plethora of drugs, poking, needles, and my right hand side feeling like all my nerves were being forcibly twanged like the strings in a guitar. The pain would not go, it did not change, it didn’t ease, it led to 5 days in 3 different wards where it was too painful to touch my skin, mind numbing exhaustion where it felt like my legs were encased in lead and taking a few steps felt like I had run up a mountain, and showers where I would be huddled over in tears trying to wash myself, keep balance and not shout obscenities at my wash cloth.

When you have on your notes that you have a chronic illness resulting in widespread pain, and you end up in hospital trying to explain your body is trying to leave its self forcibly and quickly through a firery tunnel of woe, guess what happens? They assume it’s the chronic illness. Yep. You are immediately bundled into that catorgory without a second thought. Doesn’t matter the pain was on my right hand side, felt like I was being stabbed through my lung, and have never had anything like it before. Nope. And throughout my whole stay I felt like an imposter. Like I shouldn’t be there. Even though I was in so much pain I couldn’t stand and even lying down made me go cross eyed it felt like I was being judged. Scruitinised. They knew I needed to be there. But somehow made me feel like it was all part of my condition. It wasn’t. The stay was also traumatic. There were some very very poorly people on my ward, having incredibly tough conversations with drs, family, hospice and my heart broke more than once during my stay. And my pain team who I have been under since I was introduced to Phyllis, did not come and see me once. Not cocking once, despite being asked to several times. I was not impressed to say the least.

Once I returned home, (still in sodding pain I might add) I had multiple attacks. One attack was so bad my wonderful best friend had to come and rescue me as I had dropped to the floor and couldn’t get up again... and I was completely on my own at the time so thank Christ she did, or Kyle would have come home to me lying on the floor surrounded by a puddle of wee and tears with chew marks in the carpet, where I have tried to propel myself across the room by my teeth. And the thing about consuming more meds than a pharmaceutical trade convention, is that it effected Colin. He declined to let anything pass, like a hulky bouncer at a club... He denied ANYTHING to go through, for 9 days... after 9 days sweating, cramping, hobbling due to back spasms, red faced eyes bulging and dizzy I presented again in casualty .... so off balance in fact I dropped my phone down the loo in a&e and then panicked trying to scoop out the urine sodden device attempting to drying it out under a dryer... sigh. And would they help with Colin, even though I have a bowel disease? NO! “Wait until you reach 11 days, and if no movement then, then we will intervene” I was told. 11 COCKING DAYS!!!! If there was no movement by 11 days they would not have had to intervene, they would have found me on day 11 swearing, full of a combination of laxatives, prunes and other such things scooting on their bloody floor shouting obscenities at the toilet bowl, trying to get my colon out with a spoon. This bout of constipation led to tearing so much i lost so much blood I filled a toilet bowl and consequently 3 more weeks of hydrocortisone suppositories, laxtatives and pain killers and it’s still effecting me now. Colin is most certainly not my friend at the moment. During this time feeling thoroughly abandoned I sought advice in private health care who discovered during a scan that I had a new resident in my right lung... I call him Filbert the lung goblin. He is a small undertiminable mass and is also not bloody welcome. There is no room. I have made it clear to him that he is not staying long but he ignores me and likes to find ways of stomping on my lung in his big Goblin boots at various times of the day causing me to yell out in surprise and pain.

So fast forward to the present day, complete with Phyllis, Colin, Filbert and god knows who else. I have been to physio for my back, (my right side of my back is rigid) where each session she either gives me exercises through zoom or she bends me like a pretzel and pulls me in different directions in person, (after making sure I have consumed enough painkillers to take down a fully grown Rhino) making my eyes bulge. I have been having regular sessions with a Psychologist who is helping me work on ... well me, and it’s not easy. This new back complication makes it doubly difficult, as even the smallest movement in my right hand side can set off hours of hell and spasms so I have had to have found other ways of moving, writing, working holding things and generally coping. I lost my dear friend a little while ago so I am also grieving in my own way for her. But I am also acutely aware that we and our family are safe when thousands have not been, We and our families are without COVID and allthogh isolation makes things harder, we are blessed we have what we have. It’s difficult to focus on the positive in a sea of crap, but I try to keep looking on what’s there rather than what’s missing. I try to find joy in the small things and am finally realising that I have to slow down. The realisation that I am ill has been a long time coming, and the further acceptance that comes with that is even more difficult. It’s definitely been a journey and even though it’s still one step in front of another, it’s still steps forward in the right direction, and even if I lose the map and veer off course, that’s okay too. It’s okay not to be okay and it’s okay to adjust to your new normal whatever that might be. It’s just another chapter and I think I am going to try and be more kind and accepting of my new normal moving forwards. So I start my year with a new found appreciation of myself, trying to be kinder to myself and trying to open up more to my loved ones. It’s been one hell of a year, but it’s a year of difficulties we have all shared in our own way. And by sharing we support each other. After all no matter what last year threw at us all and no matter what this year brings. We are all in this together. ❤️

[not-tryin-2-have-a-debate]

part 2 poetic waxing

i keep getting really mad at my ex the second i realize i was thinking something thats not real

because to the best of my knowledge she read this blog and heard me talk about my expiriences for so long and then she,,,,completely misunderstood them and tried to replicate them in a way that doesnt. make sense. and isnt what this is. and im still hoenstly really offended by that because wow. and i just wanna say like. especially since this blog is pretty much entirely Unseen now

like

im still terrified to recognize myself as psychotic

i dont want to be psychotic

im afraid to talk about it with my doctor or even touch on the symptoms and eps of it and im terrified to get put on pills for it and its a shit show

i think with the people im closest to i try to normalize the idea of being that way with myself

and i pretend the idea of being psychotic doesnt terrify me and say it freely because its not going away and im scared and i need to learn to not be so scared if im going to deal with it in any capacity i need to be able to recognize it

it was a long process.

i didnt start being that way overnight and i didnt recognize it until way after it started

and its not just 1 thing

to me the embodiment of it and the whole problem is that youre just constantly trying to figure out whats real and whats going on like your being hit on all sides

id describe my perception of and ability to perceive reality as a wall thats always being eroded down but can also have parts break off or have holes blown in it at any second...and im constantly trying to build the wall back up and reinforce it and repair it. but i usually dont have a fully formed wall and even if i got there id only be able to maintain it for so long until half of it got blown up again. etc etc wall metaphor if i leave it itll just fuckin collapse entirely

but yeah yknow like.

a delusion isnt just ‘when you think something that isn’t real.’

and like not to dip a bit too much into tumblr vocab and context or whatever but like,,,,,,,,,,,,,,,,,,,,,,,,,,the way Neurotypicals take symptom descriptions at total face value is...tiring. idk how else to describe it. theres so much context missing.

these symptoms for me started up when i was a kid and got worse.

it was because i have so much family history with this shit that i finally noticed it and compared and recognized the beginning to get worse problem

because ive seen it in my brother and my uncle and my grandma and my family for years and i know it up close and personally

i dont just have some kind of kooky thoughts that i recognize arent real while im having them. my ability to do that at all came with practice and time and repitition.

i dont know when im not dreaming.i see and feel things that arent there.

i think thoughts that i cant recognize as mine and are usually a bunch of nonsense word salad shit.

i have real prolonged trouble recognizing myself as a human being thats physical and has human limits.

i have toruble percieving the present. i have trouble remembering the past.

i constantly really for real feel like ive seen this before.

every time i have deja vu i like have a whoel fuckign Moment lmao

i assume people think the worst of me and want to hurt me.

i assume the end of the world is happening out of nowhere and i really think its happening.

i think God is trying to punish me.

I think spirits are coming after me.

I really believe it.

I spend my day crying and panicking and hiding from shit that isnt real.

i convince myself my whole life is some kind of divine punishment.

its on top of that and

its after years of that

and years of seeing family members older than me and farther into it than me degrading at the same time

that i think some dumb shit and immediately catch myself

or that i think im getting psychic messages and can immediately be like ‘ok calm down’

its because im trying to convince myself im NOT like a psychic prophet and ive been able to recognize it before that i can see a message for what it is and recognize what im doing

its bc ive corroborated the expirience with my brother after doing it for years and years already

i didnt wake up one day and start thinking i was a prophet but also recognizing thats crazy yknow

i thought i was a prophet and then as i grew up i started realizing that it was crazy because i found resources and saw what my family was going through and got so sick of the worst parts and thought something had to be wrong with that picture

and even then the messages arent a delusion

having dejavu and being suspicious of it isnt a delusion

wishing something was true isnt a delusion

believing in gods and spirits and weird reincarnation stuff isnt a delusion

they’re parts of a whole and thats only a few of the parts

like an example of levels

really liking a celebrity isnt psychotic

wishing you were married isnt psychoticdaydreaming about being married to them isnt psychotic

imagining they’re talking to you or they’re addressing something in an interview to you isn’t psychotic, in and of itself (imagining the message but also kind of beliving it also isn’t )

actually beliving they’re addressing you in an interview or something isn’t a delusion, and though its like Psychotically-associated isnt An Automatic Sticker Of Psychosis slapped on your forehead

forgetting you aren’t acutally married sometimes isn’t a delusion.actually beliving you’re married to them is a delusion.

you won’t be able to recognize it as that until later.

the other behaviors, for you, since youre having a delusion, will come off of that.

someone non-delusional who really loved to dream about it might convince themselves into some magical thinking about the celebrity.

for you though, its because you’re married. you’re literally actually married so of course they’re leaving little hints for you! you never get to see each other!

you rationalize it.

because you believe it and having someone put a crack in things you believe in is scary for anyone.

i mean especially wow if someone told you were werent actually married to your spouse and didn’t even know them? they didn’t even know youre name or that you existed? that would be horrifying. of course youd come up with rationalizations.

and that delusion probably started because you really liked them and because you were lonely. but also because youve been having some issues and either are psychotic, were developing psychotic symptoms, or like Had The Propensity To Be Psychotic in general yknow like. the seeds were there or you were already living life as a psychotic tree and this was just a new branch.

after a while they might start to get it.

they might start poking holes in there own reasoning and being brave enough to follow that path.

and hopefully from there theyll get to the still-beleving-it-but-also-recognizing-its-’fake’ stage.

there are a lot of reasons i dont want to be psychotic.

no one should want to be.

anyone who says they want to be is either someone who’s a disgusting creep thinking other peoples crisises are some hot edgy mysterious shit OR theyre a psychotic person trying to humor themselves and be okay with themselves.

and you should be ok with yourself but that shouldnt replace wanting to improve and manage that really scary world-ending parts of shit.thats a whole other topic though

like

i dont want to be psychotic because im terrified of slowly loosing my mind. thats a freaky prospect that no one should really want. i only want that when im suicidal and wish i just didnt have a mind to think with at all kind of shit.

i dont want to be psychotic because i dont want to keep having these episodes and seeing this shit and thinking this shit. a lot of it is absolutely terrifying. other things are less active but like...i wish i could trust anyone ever. i wish i could trust my own judgement. i wish i didn’t get obsessive and weird about contamination and not be able to eat food or need to contain myself from freaking out if certain people touch me. that shit isnt cowering from God under a desk but its annoying and i don’t want to be doing it. i wish i could stop doing it.

i don’t want to be psychotic because once youve had it confirmed that you believe things that arent real that makes it just that much harder to trust literally anything you think.i have to check everything with people because what if im wrong or assuming or jsut being crazy or i thought something up that isnt true.and we all seem to have an amazing knack for like doign that whenever we were actually with reality, and forgetting to do it when we do actually have something a little confused lol. maybe thats subconscious.

i dont wanna be psychotic because i want some things to be true!! you know!! and learnign they arent is, again, confusing and really scary. no matter what it is. but if its something that you like or that brings you some kinda positive shit then thats even worse to have taken away and have be a lie. and even worse a Crazy Lie.

i don’t know how much of my religious views to trust and thinking that anything i believe in or think is up for questioning brings up a whole lot of good things that i dont want to be up for questioning.part of the reason im scared to go on meds is because im really worried some good things will turn out fake and go away.

im worried about what all could just like...dissappear. what if the whole world changed. what if im wrong about more than i thought or something that id never even considered.

like.....im out of steam now but.

yeah. idk