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)
