Give me a Freakin' B R E A K!!

So I've been home a week now and I have to say it has been f a b u l o u s . Despite feeling sad after having to give the chocolates to a doctor I think I'd only spoken to once in my whole four weeks because none of my favourite nurses were on shift, I was happy to come home with my sister and get straight back into the kitchen. It was my cousin's birthday and she loves cream (lol) so we decided to bake her a celebratory Victoria sponge. I had my first stroll back down to the high road and picked up some strawberries and a solero. It was surreal living like a normal person again... I felt as if I'd been reborn!

The novelty soon wore off and I swiftly got back into the swing of things. I was meant to go and get my Mum's parcels from the post office the next day but it started to storm and I couldnt be arsed (glad to know I'm still the same person). So starting to be active again started on Wednesday instead. I lunched with me Nan.

My days have been filled actually, whether it be baking, visiting my Pops or getting my feet tended to. Although I have slept until noon almost everyday, I haven't been asleep for all of the day and I've actually managed to gain back some QOL. In fact, on Saturday I actually had a couple of drinks(!!!)(happy birthday annabel). Didn't take me long to get back on that bandwagon, aye? I did take it slow though, didn't wanna risk it too soon... but I didn't get a headache, wasn't in any pain and didnt get a hangover. Milestone!

But soon after my big release a heap of shiny new inconvieninces started to pile up. An eczema-like rash has festered in places you don't even wanna know about, my jawline (if you can call it that) and cheeks have become sensitive, itchy and dry, the back of my head has become itchy (not nits), theres a sore on the inside of my left nostril, my lips have become sore and bumpy (like when kids suck their bottom lip and it gets crusty) and I feel as if the inside of my cheeks have swelled because I'm biting them and getting cuts without even realising it. And to top it off I've gone and developed bloody hayfever. Oh and to top that off, my cat doesn't like me anymore because he thinks I abandoned him for a month. Does life want to throw anything else at me?! For goodness sake.

Mum said I've got scurvy and malnutrition because I didnt eat for 8 days lol (I don't.). I called my CNS and she said it sounds like I'm having a reaction to something but I told her I definitly know I'm not because everything is the same. Same washing powder, same food, same shower gel. She also suggested it may be a reaction to the antibiotics I was on but then swiftly dismissed that seeing as all these things only came up after I had stopped receiving them. In the end she put it down to me probably laying in bed doing nothing for a month and my body now being run down in comparison. Meh... kinda makes sense...

Even though we didn't know what was causing all of this for definite, I went to the GP to see what he could offer in an attempt to try and soothe my sorrows. He was fit. Looked like John Chapman; So it was kind of embarrasing having to show him my crusty skin, itchy scalp and blotchy face, but he was nice enough for it not to be awkward or uncomfortable. He reckons my rash isn't eczema (even though i had it bad when I was younger and it feels exactly the same) ...just some other kind of gross skin infection. And its probably happened just because I've been confusing my body with all the different hormone changes. He prescribed me three creams (that I have to get undressed and inconvieniently apply three times a day) and made me buy some specialist shampoo. Although he advised me not to use certain ones on certain areas and I can't for the life of me remember which ones where, so hes got to call me back tomorrow morning and remind me lol. Thank God I now qualify for exemption to pay for prescriptions otherwise I'd be living hand to mouth for the rest of my life with the endless list of drugs I need. Fingers crossed these creams solve my, what seems like, ever-growing problems! But hey ho, just another (uncomfortable) blip in the journey. Rome wasn't built in a day.

Being Different

I’ve been contemplating whether or not to do this post for a while now as I didn’t want to put a morbid twist to the blog but I think it's best to be honest and not avoid the sadness that comes about (directly and indirectly) as a result of Cushing’s. Directly, it can cause depression, anxiety and make you turn into a mood swinging biatch as it's essentially a hormone dysfunction. Cortisol is the hormone that helps you deal with stress, so having a dysfunction in the production of cortisol opens the doors for your mood to be picked up, swung around and then buried deep in the sand whenever the hell your adrenal glands fancy it. But having Cushing's can affect your emotions and mental state more indirectly too. It's a disease thats effects slowly build up and eat away at who you are. It makes you different and feeling different for me, in hindsight, has eaten away at me. This is gonna be a bit like a diary so sorry if it sounds completely self-absorbed... It kinda is.

Wivell, one of my best friends that moved to New Zealand when we were 13, came back last year and I was remembering the conversations I used to have with her about changing and feeling misaligned with everyone around me. I felt old and tired and at my age I knew I shouldn't. I had no desire to go out and had no interest in hooking up with boys anymore like normal people my age do. All that did was make me feel uncomfortable... not my cup of tea, nuh-uh, no thanks. I'd much prefer to stay in, bake a batch of cookies and watch Gogglebox on the telly with my mum. That's where I feel comfortable, thats what I'd like to do. But being different got me down.

My struggle with weight

The main physical effect of Cushing's is weight. It zaps all your energy, makes you pile on the pounds and weakens your bones and muscles, meaning building physical strength and fitness almost feels like a 90 degree, vertically upwards struggle. But weight can effect you mentally as well as physically. I've always been a bit of a chunky child but I led a relatively active lifestyle when I was younger. I was always the one that had to be the boy and do the boyish running around tasks, always sporty spice (but least I wasnt Scary), always joined in with the boy's basketball games etc etc. I've always been bigger but being active meant I was not excessively flabby child. Anyway, as you can imagine, I grew up and the days of running around the playground dried up. I went to secondary school and I, I guess, 'grew?'. In years 10 and 11 especially though, I began getting bigger and bigger (but I also discovered the 99p store and all its bargainous snacks, and running around playing tag wasnt something my 15 year old self really I did very often). My weight, although I obviously wished I was thinner, didn't have a huge effect on my happiness though, the school community was so nice that I didn't feel like it wasn't acceptable to be different. Of course I had my insecure down days every now and again but who didn't?

But year 12 came around and I was miserable. I read parts of my diary from that year and even though I know I completely over dramatised everything, some of the entries were actually quite worrying to read. When it came to Sixth Form and a whole new set of people came to invade my bubble and I didn't feel comfortable anymore, on the inside, my confidence dried up and my emotions plummeted. I was constantly feeling low and 17 year old me had no idea why. This little tumour just made me naturally inclined to feel sad whenever I had the chance. I can open my diary on a random page and it will be guaranteed to start with a morbid opening line. 24th Feb- 'Had a really bad day today and it wasn't even for any particular reason, I was just tired I guess and I guess that's just what it does to me', 29th June- 'took the day off today, just because I was feeling confused and low. Call me a self-pityer but I just needed some time on my own. I actually don't know what's wrong with me.' I live a pretty cushdy life... I haven't had any traumatising experiences, I don't surround myself with mean or negative people, I have the best family and friends in the world but still, as soon as I wasnt distracted, I would just feel sad (what felt like) all the time. I noticed I wasnt happy and seeing as nothing had actually happened to trigger a mood change, I knew the root of it was me. I then decided to make it my mission to actively work on myself. I started going to the gym religiously, after school three or four times a week, and I started eating healthier. I began to see improvements which in turn gave me more confidence and made me a lot happier. But then again, in hindsight, with all I was doing, I really should have reached a higher level of fitness and I really should have lost a lot more weight. (But Cushing's reduces your ability to build up endurance)

Then rolls around when all my friends piss off to uni and I have to try and find a job. My emotions suddenly plummet again, but I put this down to the huge changes that were going on at the time (wont go into them). I actually distinctly remember that during this time both my mum and my dad had noticed I was really unhappy and were concerned about me. Nothing was ever said but I noticed they were both making extra effort to lift my mood but nothing they did brought me out of my miserable funk. I cant imagine how frustrating it must have been. Even though I'm not in that dark place I was in then, I think my overall inclinations continued to decline. I've become more withdrawn and my anxiety to new situations has been a lot more prominent as time goes on. I cant handle anything if I'm not comfortable. Emotions go hand in hand with confidence though, and confidence comes with self-esteem. Self-esteem comes with self-image and my self-image was steadily on the decline. The effects of cortisol makes it near enough impossible for your self-esteem to improve. After a couple of very low months moping around, I got a full time job, which meant that both my time and energy were zapped and working out took a back seat. When I started putting weight on I thought it was just inevitable, going from working out for an hour and a half 4 times a week to only cycling to and from work and going on the occasional run, of course you're not going to be getting skinnier... Then uni rolled around. I know it's a sick and twisted thought, but at first I was looking forward to not being able to afford to gorge on big meals in the hopes that maybe I'd get slim. Wasn't the case. The exercise I did do was now reduced to nothing and I was still eating good hearty meals. Dinner was my favourite time of day. (Multiple trips to gelato passion and curry houses on the curry mile didn't help either) The piles pounded on alright.... Rapidly. But I guess, it was a lifestyle change I was in control of and I only had my lazy, greedy self to blame.

Last year I wasn't truly happy at uni. I met some incredible people and I really loved spending time with them, but mentally, I wasn't in a happy place. I would always much rather be at home. It was cold, I was fat and I didn't feel like I fitted in to the Freshers scene. But I knew it was all my own fault because I'd stop myself from ever enjoying it. I'd be a Negative Nancy. And getting bigger and bigger just made me feel even less enthusiastic to suck it up and put myself out there. I felt like a frumpy, boring, obese, misplaced lump that just didn't suit uni life and it was only a downward spiral. 

I've never liked my body (who does?!) but my face I could deal with. I remember one of my close guy friends (obviously oblivious to how he said it) actually telling me he’s ‘spoken to a lot of his guy friends and they all agreed I was actually pretty. If I just worked hard by doing sit ups everyday I could be one of the nicest in the year’. That crushed me. But at least I had potential.

But then I started getting bad skin. Getting bad skin teamed with excessive marking is a double whammy of shit-in-your-inbox. Do I get rid of this spot and have a self-inflicted six month mark on my face or do I leave it be and subject everyone else to witness my grossness? To feel ugly or gross? It’s a very frequent question. But I can never leave things be... so I always pop the buggars…and instantly regret it.

Then after the bad skin, my moon face swiftly started to develop. Moon face was probably one of the hardest physical changes to go mentally go through. You can hide your body under your clothes but you can't hide your face. Being big basically all my life helped me master the art of angles (i know i know, typical 21st century, materialistic, shallow, girl... but theres no bigger confidence booster than looking at a picture of youreelf and actually liking what you see) but when I reached the stage that the moon face was prominent no matter what angle you tried, I was gutted. It was now impossible to hide the true extent of my weight. My dimples were always something I used to get complimented on, but I'm so chubby that you can hardly even notice them anymore. A few years after the comment, as result of my bad skin and developed 'moon face', my face no longer resembled ‘potential’. Couldn't my weight just go to my ass? (Well no, Cushing's does make you gain weight generally but especially around the centralised areas (stomach, chest, neck, hence the 'buffalo hump'), so if I wanted a big ass I'd have to resemble an actual hippo on my top half first) I’d reached the point where I felt ashamed of every physical aspect of myself I just wanted to hide. It's a rarity that I have a picture from the past year pop up on my Timehop these days because I’ve not wanted to look in the mirror or document how unattractive I've felt. My mum loves to check in on Facebook and insist on cheeky little pictures to go with her constant updates to the world and in probably the past 10 years the only arguments we’ve ever had have been within the past year and over having my picture taken. I guess it is quite sad because there have also been so many good times and moments where she's been proud that I haven't been willing to document. Paragliding for example, I always wanted to be able to say I've done something cool and exciting, and I did it this summer. But at the time, I wasn't scared of running off the edge of a cliff, I was scared of not being able to stop my mum taking an unflattering picture of me with my big face squashed into a helmet and my tummy fat bulging out of my harness. 

Being so uncomfortable in my own skin ate away at me. Id never want to go out anywhere where image was even the smallest aspect. Id become too anxious and uncomfortable and it wouldn't be worth it. I was fully aware that I was the one who made a group of good looking people less attractive. I know you shouldn’t let what other people think of you ruin your night but when you feel like nobody wants to be around you because they’d much rather crack on with someone hot, even though they’re not hating on you in particular, you feel like you’re in a world that you can’t ever fit in with. And even if this wasn't the case I'd build it up so much in my head that I'd become such a difficult person to be around no wonder people wouldn't gravitate towards me! I'd much rather stick to going to the cinema, or a walk in the park, or going out to dinner. Just nothing that involves having to look good. 

There are a lot of people that I've drifted from and haven’t seen for years and I’d love to see them. But deep down I'm reluctant because I know that when they see me they’d think I’ve ‘let myself go’ and lost my spark and I honestly can’t stand the thought of them preferring the old me. I'd always try and delay it to buy myself more time for self-improvement before the reintroduction (both mentally and physically). 

I tried to make subtle changes to my lifestyle at uni nearing the end of the year, I tried to walk to and from uni as much as possible and tried (but failed) to eat a little better. When nothing happened (inevitably, it would be a miracle if something noticable did even on a normal person), I decided to make this summer a summer that I was gonna finally change. Arrive in second year as a new improved me. I heard that you have to make a change and after 3 months youd start to see a difference. It was my birthday in just over 4 months. My 21st birthday present to myself would be my health back. (On a side note its actually quite weird thinking this, because the actual day of my 21st was the day, whilst all my family were at work, that I spent at the doctors, waiting in the waiting room for 2 hours to get my medical form completed and given my initial blood tests which then triggered all the consequent events- My 21st birthday I guess was the first day of my journey, so I suppose my health really was given back to me for my 21st! (Its the moons!!!!)) I signed up to the gym and tried to avoid bad food. At the same time my mum and her best friend enrolled on Slimming world. They went on long dog walks and we all went to water workout twice a week together. You could see the weight dropping off them... but I was still getting bigger. I didn't understand. The whole year I'd been getting more and more stretch marks but even when I stepped up my exercise and reduced my fat intake the marks kept on coming and the weight kept on rising. You would think that it would be a piss take to work out and still remain the same weight, but getting bigger?! I didn't get it. But like with everything, you can always do more. So I just told myself: You need to do more. 

My struggle with alcohol

Even though it seems trivial and there are a lot of T-total people out there, one of the biggest struggles and symptoms for me is not being able to tolerate alcohol. Yeah sure enough I thoroughly enjoy the granny life and I’m sure I can find other fellow grannies that never drink out there… but I really would like to have the option. I love having a good time, getting silly, falling over and being sociable and it kills me when I can see it but I know I can’t be part of it. I always put it down to being half Chinese and having the ‘asian flush’ gene which I’ve experienced all my life (basically being allergic to alcohol, heating up, going red, looking like a fried tomato etc.). But over the past year or so, my tolerance has reached an all time low. I just put it down to the asian flush (not asian thrush as someone once put it) taking its toll. 

When I drink, even the smallest amount, the whole of me swells up so my skin feels tight, I get headaches, my body feels heavy, I get hot and all my senses are weakened. It's not fun or enjoyable. I get tired from having to lug myself around and channel all my energy into being able to take in the things that are going on around me that most of the time I cant be arsed and just avoid it. But do you know how hard that is growing up? I don't want to not be able to join in with what every single other person is doing! I don't wanna be the black sheep! 

So sometimes I do suck it up, and have a few drinks and get merry. And sometimes the extent that i feel all these side effects is actually bareable! (But its all very hit and miss. I think the more I stress myself out about it the worse I feel but I'm not entirely sure, it's probably an over-complex combination of things that my pea-brain cant fathom). But as if enduring the physical pain during drinking isn't bad enough, I'm slapped with the unbearable day after. I remember Christmas day to be a pivotal moment. I’d only actually had 4 G&Ts during our Christmas eve drinks (i dont even think they were doubles but that was enough to get me more than merry... cheap date, me.) but the next day I actually thought I was going to die. 

I had never experienced anything like it before. I couldn’t open my eyes because the migraine I had was splitting my head. My limbs were shaking as if I was having withdrawal symptoms, I had no strength to even get my carrots onto my fork and my whole body felt like dead weight. I spent the entire day knocking on deaths door. That was a sad christmas for me. It only comes around once a year and it was completely wasted. I didn’t spend any time with my family and get to enjoy their company. I knew I’d had a few drinks the night before but a few G&Ts did not correlate to what I was feeling. I genuinely thought I’d come down with a horrible virus. Turns out, this is now what a hannah hangover is.

I don’t enjoy drinking, but I reaaaally wish I did. It's inconvenient and my intolerance has an effect on other people too. If they want to hang out with me it usually has to be on the basis of what I can handle, what I want to do etc. that's not fair and I often felt like a burden. Who am I kidding? It is a burden. I'd be pissed if I was normal and I had a friend like me. Even though all my close friends completely accepted it and never pressured or made any comments to make me feel like I was weird, you can’t help but feel like some kind of small child ordering a lemonade while everyone else around the table is enjoying a casual glass of vino. 

Not being able to enjoy alcohol during a time where you're young, especially during starting uni, even though it seems trivial, really places you on the outskirts. You cant experience the same things as everyone around you. You feel like a burden. You cant enjoy yourself or let loose without the comprimise of physical pain. It takes its toll not being feeling normal!! Although now I am dreading that after my surgery I wont have the excuse of my alcohol intolerance to get me out of going to Factory....

'The Graduation Letter'

When I was thinking about what to include in this post I remembered back to a point this summer when I'd reached an all time low. (I know it probably doesn't need any thing more because I have basically already written a dissertation on here but I'll include it anyway), I didn't really know what to do with myself, all I knew was that I'd reached a pinnacle size, I felt ugly, I was unhappy and I needed to change. Don't laugh, I know it's cheesy, but I wrote a letter to my future self in a bid to motivate me to actually make a change. I told myself not to open it until just before graduation, so I could see how far I'd come. I just found and read the letter and it sums up me longing to be normal quite well. 

I'm still not sure how I feel about posting something so personal on the internet and I'll probably be highly embarrassed knowing everyone has read it but the effects of Cushing's really does slowly damage who you are and who you perceive yourself to be. 

Anyway, here goes (also, ignore all the grammatical errors, I wasn't expecting anyone else to need to understand it)

'To (Graduate) Hannah,

Firstly, congrats (dear God, I hope you managed to finish at least). I hope you are in a much better place than you currently are. I am just about to go into second year and I don't really know what to expect, but what I do know is I don't want to re-do it how I did last year. I hope you have managed to retain some kind of structure in your life and are living a lot more healthily than you are now. This summer has not be great, it's the ending to a pretty bad year (but nothing tragic). 

Last year you were a Fresher that didn't make enough effort with your friends and you failed to maintain a healthy lifestyle. You went to uni, got fat(ter), stressed about work 24/7 and didn't even do amazingly. You did alright. Basically, you did enough to survive, but you didnt get to a place that you wanted to be. Right now you are the biggest you have ever been, with stretch marks left right and centre going in every which direction possible and sometimes you feel like your heart is jumping out of your chest. ***I now know this is a side effect of the excess Cortisol, not me suffocating my heart from obesity, I haven't quite reached that stage yet, touch wood!*** It's quite scary really. I don't know how I managed to get myself to this point. I go through spouts where I can feel my eyes being squashed by the size of my fat cheeks ***another side effect is inflamation*** and my entire body feels swollen and permanently uncomfortable. I really hope the person reading this has no resemblance of what I am now. I hope you have grown some will power and cut down on the amount of food you consume in general. I hope that when you are feeling down you treat yourself in a way that will help you instead of going out for a nice cheer up meal. I hope you exercise regularly and have actually achieved something from it (a charity run maybe?)

Freshers has taught you that you need to be attractive and healthy to get somewhere in life. I am currently unemployed and desperately looking for work but nobody wants me. I don't project the right image. I'm not confident in my own skin which doesn't make me attractive to customers or future employers. 

Today I signed up to the gym, so this letter can be a mark of the old me welcoming the new me.

I hope that you don't recognise the girl writing this, that you are happy and healthy. That you feel comfortable with who you are and what you look like. I hope that you have managed to create new friendships and relationships as the new improved me.

Relationships are so far away in the distance for you currently. If someone was to declare any kind of attraction (even just personality-wise) there is not a chance in hell you could fathom taking it seriously. It has been years since anyone has looked at you in an attractive way, except a homeless man in Brixton last week. You reminisce about when you were 18 a lot. When you were in a structured routine and losing weight and having a happy lifestyle and in a way you hope the person reading this is back to that secure mentality. 

All in all I really hope you have loved yourself in the right way since writing this. University is now over and I hope you have some kind of idea in what you want to do to move forward. Currently teaching is still priority but thoughts are channelling to a potentially more personal and supportive child related career - you enjoy building strong relationships. Hey, maybe you'll have gained enough confidence to be willing to take on cheeky secondary students?

Nobody is married yet and you have already told them you want to look good in the photos so they're not allowed to until graduation... So I hope this is still the case. 

I hope you are able to enjoy going out and don't feel uncomfortable surrounded by people prettier than you and I hope you still have the same friendships I currently have. Your friends have stuck by you and you really should repay them. At the moment when you go out you're a Debbie Downer and because you always feel so uncomfortable you never fully let loose and have a good time which can drag the whole team down- so get your act together and have a good time! Everything should fall into place.

I really hope that you've stuck by your plan and you're happy. Good riddance to the girl currently writing this and I hope the girl reading this is who she wants to be.'

wow. deep. I really am 'woe-is-me' when I want to be aren't I?! Feeling sorry for myself is one of my favourite past times. I now want to burn that letter along with all the emotions that came with it.

I cannot stress how much I have to thank my friends and family for though. I honestly look back and wonder why the hell they have stuck by me. There have been so many times where they have had to cater for my weird needs and requirements, so many times where plans have had to be changed so that I would enjoy them, so many times where my Cushing’s induced tendencies have allowed me to be shit and unreliable but day in day out there hasn’t been a time where they have blamed me or made me feel bad for any of it. I am so lucky. Over these past few years especially, I turned into a right old misery guts, my Debbie Downer moments have been countless, yet not once did I feel like I wasn’t cared about. The only person that attacked me was myself. I count my lucky stars for the people I have in my life and I am praying that after surgery I am able to be the person that they can rely on, that can go out and have a good time without overthinking everything and that can pay them back for every moment they’ve stuck by me (sorry about the mushiness but its true). I'm still gonna always LOVE feeling sorry for myself but after surgery we're gonna get the old me back! (If laptops had emojis I'd place the dancing one here)

Im Going Home!!

So despite my release being scheduled for the 5th June about 10 days ago, yesterday I had to wait until 5pm to be told the doctors failed to organise my discharge in time to catch the pharmacy. No drugs for me. A visit from one of the consultants basically confirmed I may as well not have any pituitary gland left at all and I have to be on replacement for all 5 functions... so I kinda need those drugs. I was told I had to stay another night. Annoying, but okay... Discharge promised the next day and I get to see my favourite Alvaro again! Me and my Mum boycotted my confinement and went for a walk in the park and a sourdough pizza (I regretted it when I had to roll back into bed).

The past few days I have been itching to get home. I didn't bond with the nurses I had assigned (except Jeremel and George, love you Jeremel and George xox) and out of visiting hours the only communication I had was ordering breakfast or someone asking about my health (and now they have no concerns even the health visits are brief). I never thought I'd say it but I'm bored of my own company! Don't get me wrong, I still love 'me' time, but when all i can do during 'me' time is watch things on my laptop, go to the toilet and fail to complete a single crossword for 19 hours a day for four weeks, I think I've exhausted it. I am SO unstimulated.

Anyway, as my time in hospital draws to an end (this time.... chances are, with these bloody Crooke's cells, I'll be back again.) let's look at some horrific pictures of the rollercoaster I've been on while in here.

First photo after first surgery

DYING from the heat

cross eyed, crusty faced tampon selfie

Went for a shower and everyone had pissed off... a lonely lunchtime 

when my cousin sent me this...

...i sent her this...

After first surgery when we thought that Timmy had gone and I was feeling fine!

Second surgery

Zonked in my new dark blue cave

waking up (but still with photophobia)

 first meal all week

meningitis strikes

attached to my drip and doubling the sunglasses 

battered and bruised and running out of veins

but feeling well again and starting to get bored!

 attatched to a drip 7 and a half hours a day, this guy became my best pal. I could also only wear one jumper with big enough sleeves to roll up to my armpit, so that was fun.

but i didnt love it as much as this guy- picc line <3

first time out in three weeks

Pedicure c/o mum

feeding time at the zoo

labelling my many, many bed pans with my bed number so they can identify my piss...

...and add it to my chart (not a great morning... input on the left side, output on the right... id pissed over a litre and it wasnt even 7 o'clock yet)

I am gonna miss the people and the routine in here... but after four long weeks I can confidently say I am ready to go home. Peace out bitchez xoxoxox

Being a Pansy

Yesterday was probably one of my worst mornings in here yet. I again, couldnt sleep until about 2am and then when I finally reached some deep sleep my bladder decided to poke me awake again. And then again every hour after that. I dont think after those initial couple of hours of sleep I slept properly at all. I was just dreaming and dozing about needing the loo. So when the sun had risen and it wasnt a 'getting to sleep' atmosphere anymore, my mood for the day was set- tired and emotional. I cried when the dinner lady asked me if i wanted any breakfast, i cried when laura came in to check my obs, i cried when my surgeon came round and shouted 'ANY LEAKING?' like he normally does (poor guy didnt know what to do, he offered me counselling and then tried to scurry away in confusion). I was a mess. The staff were tiptoeing around me all morning bless them. I honestly dont know what hit me all so hard. I kind of just wanted to be on my own away from anyone so i could pull myself together and get over it, but jobs need to be done and I was having to rear my head in public to piss every half an hour too...

I heard on the grape vine I had been discharged by endocrinology, which would have meant I could go home once this infection was sorted. But I was pissing like a fountain and drinking as if my stomach was bottomless yesterday and that evidently showed my medication to control my fluid levels wasnt right. Which then means im still having endocrine issues and Im not actually clear to go.

I know its trivial in the grand scheme of things but I can't go on the holidays i planned this summer because its too dangerous to be in a hot country if i cant keep myself hydrated and now my family have to rearrange their planned holiday to stay somewhere close by in the UK. I was just so frustrated cause I feel as if this stupid disease is controlling my life and burdening everyone elses. Before my first surgery i was so optimistic thinking that theyd be able to pop it out and then done. Remission. Have to keep an eye on any tell tale signs of timmy returning, but can live a normal life like everyone else. But since being told it was aggressive, that it had spread to the bone and having to have the whole gland cut away at to a point that theyre not sure if it has any function at all I feel as if its slowly consuming more and more of my life. 

I cant be arsed with all these restrictions ! Im gonna have to always be in close proximity of a toilet, always gonna have to be able to access a hell of a lot of water to maintain my intake/output balance, cant be trusted in the heat (as it stands) and i just feel very needy and different from everyone else. Which i hate. I dont wanna be the one that people have to look out for or have to work their plans around. 

Anyway, the endocrinologists are working hard to get me figured out so they can put me on the right medication and enable me to live the same way as everyone else. Whether theyll find the answers soon is a different question but i know theyre trying their hardest. Why have i gotta be so god damn difficult!!! Anyway, the day went on, i saw my nan in the afternoon and my dad and sister brought me nandos for dinner so im going to bed feeling a lot more settled and positive than i was this morning. My fave nurse alvaro is also signed to me tonight so thats made me happy. Good days, bad days. I guess thats life for ya.

Nighttime rambles

Im laying in bed contemplating whether i need a wee or not because i cant fall asleep and its the only thing i have to do. I can hear someone in a room near me snoring for england and while i listen to them choking on their tongue every 30 seconds, i cant help but mentally make a list of reasons i cant wait to get home. (Went to the loo after writing this paragraph, its bloody bed 29. Fast asleep with the door wide open. Id never have thought her to be the culpret... Shes only tiny! but my god shes got some lungs on her... and doesnt the whole bloody ward know it.)

Im laying trying to get comfortable enough to sleep and i just cant with my bra digging into me. But im hooked up to my drip and i dont wanna pester my nurse to unhook me so i can get my arm out the strap because im gonna have to pester him in about 15 minutes when my infusion finishes anyway. I will choose ny battles and I can wait and be uncomfortable 15 minutes more. Its not like im gonna get into a deep sleep in that time anyway... 

Which nicely leads me on to another reason I cant wait to be home... the fact that if im well enough to go home, Im well enough to not need to be hooked up to a drip for 7 and a half hours a day, and I wont need to ask permission to use the toilet or move more than a foot away from my bed. I also wont have to wear these stupid non-slip socks everyone has to wear when I'm on my feet. I mean, im kind of glad because they do conceal the true extent of my crustiness and ugly toes but its a faff I cant be arsed with. Dont even get me started on the tight TED stockings I have to wear too to stop me getting blood clots because Im spending too much time in bed and its not good for circulation. Ive started to boycott them already. Trick is to wear something long enough to cover your ankles and keep your socks on. The nurses will never know. Theres no way of getting round the blood thinning injections in your tummy to stop blood clots though. The nurses are on the ball with that one. But at least it doesnt hurt. It just stings a bit. (but the area that it stings is such a tiny pinprick that if you cant handle it you really need a slap): 

I also wont miss whoever the phantom poop smearer is. Not just skids in the toilet but all over the toilet seat too the past couple of days. I know me strolling out to get the nurse whilr my bowl of piss is still chilling in the loo isnt the most pleasant thing to walk in on but there was shit on the floor this evening. And you can only notice the smears surrounding the toilet once youre committed to the act and already sat on the loo. Honestly. I know youre sick but if you cant clean it up yourself the nurses here are nice enough to do it for you! Were all meant to be in this

 together.

Another thing i wont miss is ward meal times. Call me a hypocrite because ive always said i love hospital food (which i still do) but having to eat at such specific times and being restricted to microwavable meals and trifle gets boring and kinda neausiating after a while. While im in here i can be as demanding as i want and have whatever meal i fancied delivered to me via mum dad sister or cousin within the same day though, and i will deffo be missing that after discharge. 

I think ill miss being a demanding brat in general actually. This call bell opens the doors for anything. Cant be arsed to get out of bed to turn the light off? Call bell. Feel cold and want the windows to be shut and get tucked under an extra blanket? Call bell. Ran out of water? Call bell. It is like having servants in here. The nurses must hate me. But i cant strongly day that i love them.

I will miss the little community they have here too. Everyone is so nice and unjudgemental. God knows what it takes to put up with me for 3 weeks with my dry skin swanning around and having to measure my piss every 45 minutes, but somehow they all do it and with a smile on their face. Nurses definately dont get  enough recognition for everything they do and how much they accomodate. If i could grant them all their wishes i would.

Anyway i might actually be tired enough to try and sleep now. Which i should do seeing as the day starts at about 5:30 in the morning and where my room is it is impossible to sleep after then. Its right next to the entrance, storage room where they wheel in and out the big metal carts of laundry and equipment, all the metal bins that get changed what feels like 600 times a day and the nurses station where they all have to coverse and organise. But hey, free rent. I should not complain. 

PICC Line Happiness

On Wednesday evening, George, the vein whisperer, was called in to see to my tricky little pipes. He managed to take blood from my arm and get a cannula in the back of my hand first try, so the relief from anticipated blood trauma was settled and I was happy I didnt have to worry about that for a bit. But then the good news came! PICC line booked in for the next day!! Apparently it was a struggle and I don't know what nurses were responsible for making it happen, but whoever it was- I hope they eat good everyday for the rest of their lives.

I had to wear the hospital gown and pants again because I'd be going into theatre (sounds more serious than it was) but this time my pants werent paper- the were like some kind of stocking mesh. lol, quite comfy actually. The porter came with a chair... :( I wasnt going to be wheeled down in my bed like before surgery and for my x-ray (Oh yeah sorry forgot to mention that. I had a chest x-ray requested when they knew I had an infection. It happened on one of my dark days where I didnt open my eyes, but I could hear the porter struggling to get the balloon off the end of my bed and flirting with the nurse that had to accompany him on the way down. I thought x-rays were like scans, a bit like an MRI or CT, but they literally place a board behind whatever area theyre looking at and take a picture. Takes maybe 5 seconds for the entire process... anyway, all clear, brain is funky, but chest is good.) The chair isnt comfy or a smooth ride. If given the option, always choose the bed.

I was booked in for 1:30 which was alright timing seeing as the procedure was only meant to take about 15 minutes and I had some uni friends coming at 2ish. But I had to finish my session on the drip and wasnt taken down until 2. I had to wait in recovery to be collected and taken to theatre and being there for a little thing like fitting a PICC line but listening to a man coming back around from a serious surgery in the bay next to me was super unsettling. He was struggling to breathe because of fluid in his lungs and they were making sure he was okay and assisting him inhale his oxygen mask. He also needed to pee but didnt have the strength (been there mate, feel for you). But anyway, I had to wait for half an hour all too aware of the craziness around me when they finaaaally came to get me and wheeled me into theatre. 

They were nice, it was calm, the radio was on as per. They prepped me and set up all the equipment and everything. I had to wear one of those hair nets and I looked like a right twat, but hey just gimme that PICC line and gimme it now!! The procedure took maybe 2 and a half minutes. It hurt less than most of the cannulations that I'd had before because they gave me local anesthetic and before I knew it I was wheeled back to the same recovery room with the same man behind the blue curtain in bay 2. 

...They forgot about me. The time I was in theatre was so short and theyd obviously been busy tending to the man next to me (his name was Brian) that they didn't realise I'd already been and come back. They thought they were still waiting for the surgeons to collect me. Reality was, I was waiting for them to call a porter to come and collect me. Anyway I was waiting around with a bit of a headache just wanting to get out of there and back into bed for another half an hour before they realised. I got so frustrated I was kicking my legs around in the hopes they would notice me lol (spoilt brat since 1994 xox). While I was out of recovery poor Brians bowels had obviously had a bit of a stir and he was begging to go to the toilet. But it was too soon after his surgery for him to be mobile and he had to be hooked up to the oxygen tank so popping to the loo wasnt an option. I felt so sorry for him because he was desperate and trying to maintain any last bit of dignity he had left. They offered him the bed pan and brought over a commode but all he wanted to do was poop in a cubicle privately. At one stage he was wrestling about 5 people trying to escape and in the end he had to give in and use the portable toilet. My heart felt for him but I really wish they just hadnt have forgotten about me so I didnt have to sit and endure the smell of fresh drug poo linger for so long. 

Anyway, the porter finally came and I was wheeled back up to my little blue cave, reunited with two of the friendliest faces and trashiest magazines. Since my PICC line has been fitted life has become ten thousand times easier. I have no feeling of anxiety when the nurse walks past and I'm able to get the drugs that make me feel good again! And me and Sonny can be pals once more because theres no chance of him accidently pulling out this one. Well there is, but that would have to be an almighty tug and I doubt it would ever come to that. Eugh don't even want to imagine that. Disgusting.

Part 3: Another (Hopefully Final) Hump in the Road

So yesterday I finally started to feel able to feel part of the world again. I still hadnt eaten properly since before my last surgery over a week ago, in fact, I can list on both hands all the things I've eaten. A total of 5 nandos chicken wings, a handful of chips, and half a corn (over two days) a few calippos, a bar and a half of mint aero and almost all of a mint feast. And although I felt semi able to function, the thought of having any food still made my throat seize up. But that seemed like the biggest problem which I had to work towards, everything else seemed to finally be sorting itself out.

But as soon as my mum left, I felt a little drowsy and the nausea seemed to get a tad worse. I just got the nurse to turn the light off so I could sleep it off. But every time I was woken up in the night for my obs and other things (blood taken through the right ankle this time), my headache and nausea seemed to be getting worse and by the morning I was feeling terrible again. Weak, drowsy, sicky and a dull ache behind the eyes and a strong ache in the back of my head/ neck. A pain I again, couldnt steady. The doctors came in and checked me out and I'd gone back to the weak murmuring again so that triggered the worry again. They decided to switch back my antibiotics to the full whack powerful ones and give me another lumbar puncture to relieve some more pressure which seemed to be causing my headache again.

Two guys strolled in again, different ones from last time (even though I didnt see them at the time, their voices were very distinctive and loud and I was introduced to them the day or so after, when I could open my eyes). It was clear that one was a fully trained doctor and was teaching the other one. I really didnt fancy this lumbar puncture this time, I didnt have my mum with me and I was slightly more with it so I was all too aware of what they were going to do. After about 5 minutes of preparation it was clear that the student was about to give his first lumbar puncture, with me as the doll. I didn't want it even more. But you've gotta do what you've gotta do, and if hes gonna learn from this, then let him try and do his thing. He gave me local anesthetic, all fine. Done. But then it came for the big boy and he couldnt quite get it in the right place. He was having to scoot around and although some of it was numb, I could still feel what was going on. I coud tell when he hit my spine and I could tell when he'd gone to far. Anyway, wherever that needle went wasnt the exact spot and he wasnt able to get the direct place that he could drain any CSF from.

Clearly in pain they decided to let the other doctor take over and perform it himself. I heard him saying he was just millimetres away but it just practise that helps you know exactly the right spot. They had to start all over again, and anesthetise me again. After being prodded at painfully already, the second try wasnt at all comfortable either. I got a sharp shooting pain down right into my hoo ha which made me wince. He asked me if it went down my leg and i just 'mm'ed while keeping my lips tightly purse. He said it happens sometimes and should only last a couple of seconds. I had that shooting pain (down my actual leg this time) about 3 more times. It was horrible. I dont want another lumbar puncture ever again. I could feel something trickling down the skin on my back too. Whether it was CSF or blood I dont know. But I looked at my bed later and I had a nice bloody patch on my sheets. Minutes after my sheets had been changed. Men and their timing aye.

Anyway. I got the nurse to turn off the lights and I layed, paralysed (you have to lay with your back straight for an hour or so after the procedure) and sobbed under my blanket until I fell back asleep. But then my brother popped in because he was in the building for a physio appointment and it was nice to see a comforting face. Shame I couldnt get that neck massage he promised though because I had to be on my back. I was looking forward to that. Anyway, he got chucked out cause it wasn't visiting hours and all the doctors and nurses purposely do their things in the morning so they don't have visitors hanging around, and another nurse needed to do her thing- cannula joy.

It wasnt that traumatising actually. I wasn't being prodded while half asleep and she found a vein just above my 'golden vein' (which isnt so golden anymore because it was the go-to and has been used so many times its just one big scabby blob now). All very swift too. I was pleased and she was pleased. I was able to be hooked up to my good old IV machine again and they were able to pump the original antibiotics back into me and get me back on that path to recovery again.

I had a snooze and when I woke up it was as if the morning hadn't happened. Felt like me again (as much as I can rn). Despite being in a bit of discomfort when readjusting my positions and not being able to bend down because of the lumbar puncture pain and just generally being a bit weaker in my back, I had full ability back. I could sit up without getting a headache, I was strong enough to move things and my eyes had readjusted and I had the light on!! For the first time in about a week!

My cannula was feeling a bit uncomfortable because I felt the dressing was too tight so the plastic was just pushing down on the skin of my arm a bit. Nothing major, but being the picky whinger that I am I asked the really nice nurse to loosen it a bit. He tried but the tube accidently came out and the cannula couldnt be used anymore. I felt so bad. I hope the person in charge of him didnt give him a bollocking. He avoided doing anything for me for the rest of the day in fear. I hope once I get my picc line in we can be friends again.

Anyway, noone could find another vein so I decided to seize the day being cannula free and took myself to the shower with all the nice new shower stuff my mum had bought me in an attempt to get me washed (properly). I finally scrubbed my dryyyyyyy skin and shaved my ultra hairy legs. It was long overdue and I finally felt human again. Today I also ate. wwwwwwooooo hooo. Nice Nurse Mike told  me they might have to put a tube down my throat to feed me which i NEVER want EVER. So it was nice to not be nauseas for long enough to keep that threat at bay.

They said my CSF fluid hasnt grown any particular bacteria yet, but the first sample showed an elevated level of white blood cells (indicating an infection I was trying to fight) and the second sample showed less (indicating that the antibiotics were doing the right thing). So hopefully now they know they're on the right track, I'll be feeling better and stronger by the day. Surely I must have run out of things to hit me with!! Anyway, back on track... thank ya Jesus!