It's been a while since I wrote on here! I had a break from social media because my mental health was struggling a little! But I've had a decent 2-3 week break from facebook and I feel so much better.

Looking after your mental health is so important. Since I can't work, I am at home all day and I found that I was just scrolling social media, comparing my life to everyone around me and it got a bit toxic. I started to feel like I was a failure and that isn't a good place to be, so I deleted all social media apps off my phone and it was such a nice cleanse! I am feeling so much more positive.

Lately I have been thinking about the last 10 years. I have been sick for 10 years!! It is a little crazy when I think about it, I still think about where and when things went so wrong! But over the last month, I have changed my mindset a little and thought about how fucking strong I have been. It may seem cocky and that's fine but I have been through a lot and to be honest, I think I have done bloody well. Yes, there have been times that it nearly ended because of my own doings, but it didn't! I am here and I am stringer than ever. I have started to change the thoughts of "This is all my fault" to "yes things could have been different, but they aren't and I wouldn't be where I am today if it wasn't for this wild rollercoaster of a journey".

I am 26 with 5 chronic illnesses, sure, but I am also 26 living in my first house, with my forever person, I have the best parents, I have the most amazing birth mum, brother, and my birth mums husband who I see as my birth dad, I have the best team at the hospital, I have the most amazing friends in and outside of the chronic illness community, I am happy, I have overcome the darkest place of my depression and I am still here. I can't say there aren't hard days because of course there are but who doesn't have hard days, you know?

I want to talk about my friends actually, lets get into that. It is super hard to bring people in to your life when you are chronically ill, when you are writing this massive story and they don't understand. There are people who use you for your health and excuses, there are people who want to get to know you because they are nosey and there are people who were 'there' before, and come back into your life because they feel bad and they want to make themselves feel better. It's super hard to trust new, and even old, people and of course, I have lost a lot of friends during my journey but I want to focus on the people who have stayed.

Lets start with the two girls who have been there since day dot- Ali and Pietta. Now with all friends there have been ups and downs within our friendship but these two girls have never failed to be there when I needed them. They have been by my side in the hospital, getting dressed in hospital gowns with me so I don't feel so out of place, they have been a shoulder to cry on, they have rubbed my back when vomiting after surgery but most importantly they have never treated me differently. 

Then there is Megan, my little sister. I lived with Megan for aaaages and I kid you not, she made me dinner, cleaned my room, made my bed, did my washing and always asked if I needed anything when I felt sick. She took time to learn about my diseases and what I needed when I was unwell. There's not many people who can come into my life half way through my story and stay! I can be a right bitch when I feel sick and like she never got mad or judged me! She knew what to do when I was sick and she also knew what not to do 😂😂

Then I have my family friends like Rushlee, Viv, Don, Jenni, Paul, Kelly, Nicola, Helen and Colin- Just to name a few. I don't really see these people as 'family friends' these people are family. The people who have helped not just me, but helped my parents. These amazing people have shown me that family isn't always blood. 

I can honestly say that my mental health is always improved by knowing that I will always have these people in my life. And of course it is helped by my parents and Conor- but that just goes without saying right? If not- my parents and Conor are my life savers, they are my world, my heart, my soul, my bestest friends ever and my biggest loves. I genuinely wouldn't be who I am today without these three.

When you have bad mental health days it is super hard to see the positives, and I have been there, I know what it feels like to not see any positives throughout the day. I find it super important to take a step back and appreciate the small things. When I was off social media, I literally started to appreciate the air that I was breathing- like for the first time I realised how fresh it is. Ew that sounds so poetic and lame but it's true! Taking time off social media may not work for everyone but it definitely worked for me. It is so important to take time to realise what may be affecting your mental health and to eliminate that thing. It was super hard for me to delete all of my socials because I didn't know what I was going to do with myself but bringing that challenge into my day gave me the sense of accomplishment. Taking this time has helped me so much.

Anyway, if you have got this far- well done! It was a bit of a ramble and a little bit of an appreciation post for the amazing people in my life.

If you are struggling with your mental health please know you are not alone! I am always here to talk to and help in any way that I can. I hope you all have a beautiful weekend and appreciate all of the small things in life. 

I love you all,

Ally xx

xx

Wow, I did not expect the response that I received from my last post! I didn't even think anyone would read it so I hadn't really planned on writing another one, but here I am! I want to say thank you so much to everyone who took their time out to read my blog last time. The kind and encouraging words I got back was so overwhelming! I am super grateful for you all. Well since my last post, I moved house! Which is also why I haven't really had time to write another post! I have moved back to the Waikato from the Bay of Plenty to be closer to Waikato hospital. I have been thinking about what to write in this blog and I thought as well as it being my outlet/ diary, I wanted to make it a little educational. So in this post I want to write about my diseases- what they are and how they effect me. So my disease diagnoses are Autoimmune hepatitis, Autoimmune haemolytic anaemia, Crohns, Ulcerative Colitis (UC), Primary Sclerosing Cholangitis (I'll refer to this as PSC because who has time to write, let alone read those long words that mean absolutely nothing if you don't know about it), and Anxiety and Depression disorder.

Lets start with Autoimmune Hepatitis-
Autoimmune Hepatitis is a liver disease that comes about when your immune system starts to attack the organ. I was diagnosed with this in 2012 when I was having chronic liver pain. (it sounds so strange because who even knows that their liver hurts, right? I never realised it was liver pain until I woke up yellow one day and ended up in the hospital for the first time. The way I explain this pain is like intense indigestion, like indigestion pain times 10,000! I remember the first time this happened, I had friends over for a sleep over but I ended up sleeping in mum and dads bed because I was in so so soooo much pain! It was actually really scary because I had never been sick before in my life, I had no idea what was going on! The side effects that come with this disease is fatigue, joint pain/ stiffness, chronic pain and sometimes discolouration of the skin and eyes. It isn't often that I get yellow skin but when my liver is in a flare, my eyes do turn yellow! When pain hits, it is always out of the blue. I don't eat a lot of heavy meats (like red meat) because i can eat it, be fine and then 10 minutes after eating, i can be on the floor crying in pain and really struggling to breathe.

Following this disease is PSC-
This list of diagnoses aren't in order by the way, I just thought it was a good follow up from the last one 😋
PSC is a liver condition where the bile ducts in your liver close or scar over and, due to inflammation, prevents bile, that is being produced in the liver, to be released and help break down food. So basically, it builds up in your liver and the pain is quite literally unbearable, it is truly debilitating. This is probably my scariest disease to be honest. I have procedures every 6 months to a year where they put a camera down my throat and try to open up the bile ducts (it's called an ERCP procedure) don't ask me what the procedure stands for because I have absolutely noo idea! My specialists say I need it so I just say okay, whatever helps! It is a pretty easy procedure, I am asleep the whole time! My latest procedure was so painful though, when I woke up, I was in so much pain. They gave me ketamine and I genuinely thought I was dying! I was screaming in the recovery room "WHY DO PEOPLE TAKE THIS SHIT RECREATIONALLY!" it was quite literally next level 😂. The way this disease effects me is really just the pain. I mean after one of my procedures my specialist told me that in the next 2-10 years (lol) I will be needing a full liver transplant- other than that playing on my mind quite a bit, it is just the pain that really gets to me! I am on steroids to help with the pain but it only really takes the slightest edge off, nothing else helps with the pain! But on my pain days, I just stay in bed, relax and sleep! I mean it's all I really can do but like I always say, it could be so much worse. PSC is a very uncommon disease but my doctors always say to me that I don't do things in halves, I have autoimmune hepatitis, of course I also have to have PSC!

I'll do the next two together because they are kind of similar! Crohns and Ulcerative colitis (UC)-
I was first diagnosed with Ulcerative colitis so let's start there. Ulcerative colitis is pre-cancer. It targets your colon (Large bowel) and it is pretty much filled with ulcers! When I was first diagnosed with UC I was 17 but I was having symptoms since I was 15. My symptoms were constant diarrhoea, blood in my stools, vomiting, stomach pain whenever I ate, 20-30+ bowel motions a day and drastic weight loss. UC was the reason I had surgery for my first colostomy bag and feeding tube. My colon was removed and we thought it was the end to all the bowel issues. Big emphasis on the thought. After my reversal, everything went down hill again. Weight loss, exhaustion, no appetite, 20-30+ bowel motions again, blood in my stools again (remembering I have no colon so I thought constant diarrhoea was normal...) I went to my specialist, had a colonoscopy done and boom, I was diagnosed with Crohns disease. Again, I don't do things in halves 😂 Crohns is more debilitating that UC in my opinion. Crohns can affect the whole digestive tract from your mouth right down to your bum. Like the bottomest bottom of your bum you can think of! Both ulcerative colitis and crohns both have to be diagnosed with an endoscopy (camera down your throat) or a colonoscopy (camera up your bum). They are both inflammatory diseases and occur when your immune system attacks the organ, kind of like auto immune hepatitis, just a different organ.. obviously. Crohns disease was the reason for my colostomy bag/ stoma this time and also the reason I had a feeding tube at the end of last year. They have both had an impact on y life but because my colon is removed (due to UC), crohns gives me a more constant battle. But to be honest, I love love love my stoma, his name is Rudolph (Both times I have had him, I have got him around Christmas) and he has brought me back a decent quality of life!

Next we have Autoimmune haemolytic anaemia- 
I'm going to be real here and say that this disease doesn't effect me in a big way at all... I mean I am a walking, breathing banana, I bruise if you just tap me but other than that, I don't know a lot about this disease. I know that it means that my immune system thinks that my red blood cells are a foreign object in my body and attacks them and I know that it is really rare but other than that, the only symptoms I get from it is like a rapid heart beat (my resting is usually 90-110 bpm). I should probably google about it and see what it is but I never trust google. My other diagnoses effect me a lot more so I am happy enough not knowing 😂 but please don't be like me, if you are diagnosed with something, please do your research because it is actually really helpful- all of my other diseases, I have done pretty extensive research on them to get to know what they are and what I can do to help keep things at bay!!!

Finally we have Anxiety and Depression- TRIGGER WARNING OF SUICIDE!!!!!!
This could be pretty sombre, but I like to think of myself as a pretty positive person so I will try not to be too Debbie downer! I believe that my anxiety and depression is triggered by the thoughts of "What my life could have been". I was swimming for New Zealand, I wanted to be a nurse, I wanted to live overseas and most of all, I wanted to be able to work full time. I get really down when I see everyone around me heading to work every day. There are days of the week that I cant even get out of bed, let alone get out of bed and go to work for 8 hours. I mean I had a degree, I graduated last year with a bachelor of Early Childhood Education, but I cant work a normal day and i'm not going to lie, it gets me down. I take medication for my mental health but it has taken years to be put on the right one. At the end of last year my doctor and I were trying out different medications for my depression because Fluoxetine had stopped working for me. This was the lowest point in my life. I was so so so sick, I was the smallest i had ever been, my pills were going straight through me, i wasn't eating, I was so so so depressed and anxious about what was happening with my health. I felt like a burden to everyone! One night I got so deep into my head that i thought what even is the point in life so I tried to overdose on Codine. THANK GOODNESS IT DIDN'T WORK! Because if it had, I wouldn't be where I am today- the happiest I have ever been and some what healthy. Now what I really want to get across here is that you honestly are never alone. I am here for you, I never want anyone to feel the way I felt, so please, if you are feeling low, lonely, suicidal please message me. There is absolutely no judgement here, nothing is too small or too big! I don't care if we have never talked before, please message me! You genuinely always have a friend in me. I am so so so grateful my suicide attempt didn't work, at the time I didn't see the light at the end of the tunnel, I wasn't excited about the future or anything like that. But now, I am the happiest ever, I have a plan for my future, 💕I have the most amazing friends (Ali, Megan, Pietta, Simone, Rushlee, Viv, Lauren, Xanda, Chris just to name a very small few) who are always there to make me laugh and talk too.
♡The worlds best and most supportive boyfriend (Con) who is quite literally my world. He is always always always there for me, always there to have a shoulder to cry on, always loving me even when he wakes up and my bag has leaked so is laying next to my shit 😂 I couldn't do this life without my better half. The love I have for this man is out of this world. 
💕I have my Birth mum, Nicky, my brother, Liam and my substitute birth dad, Scott. I wouldn't be who I am today without these three, my bestest friends and family. They have been there for me every step of the way, loved me unconditionally, never left my side and have been there to make me laugh so much till I snort.
♡And of course my parents? I cant even begin to explain my gratitude and love for them, they are my everything. They have never once failed to be there for me where it be my health or mental health journey. I cant even put into words how thankful I am. I could tell them every day how much I love them and it would never be enough. 
There are so many people who love and care for you, you are never ever alone!

Anyway, again, if you have got this far, well done! Thank you for reading about my health journey and conditions!! If you have any suggestions on what I can write my next blog post about, message my instagram (ally.vs.chronicillness). It is my goal to try and get at least one of these posted every week, but we will see how long that lasts 🙈 
Have a beautiful Monday my friends, love you all heaps
☺💞

Me and my bag

 

 Kia ora everyone,

My name is Ally Gordon and I live life with 5 invisible chronic illness. 

My story:
My journey began in 2012 when one day I all of a sudden woke up yellow, with a pounding headache and major brain fog. I was sent to hospital for 3 weeks and left with the diagnoses of Autoimmune Hepatitis and Autoimmune Haemolytic anaemia. This obviously had a major affect on my life as before this diagnosis I was a competitive swimmer for Waikato and New Zealand. My mental health dropped a little but it gave me more time to hang out with my friends and be social. 
In 2013 I noticed a change in my bowels. Constant diarrhoea, blood in my stools, weight loss and appetite loss. In 2013 I was 17, there was no way I was speaking up about this to anyone so I kept my mouth shut in hopes that it would go away... Long story short- It didn't.
For years I ignored these symptoms. I worked full time, lived my social life, studied and pretended like nothing was wrong. I lost weight drastically- so much so that I looked anorexic but no one said anything to me as they thought that this was a personal thing that I was going through. 
It wasn't till one day I walked into work crying because I felt so sick, so mentally and physically exhausted and sick of hiding this secret from my family, friends, doctors and professional specialists. 
My boss at the time took one look at me and sent me over to the AandE centre across the way from my work. I rang my mum and told her to meet me there, I was seen by a doctor and straight away she admitted me to the hospital. 
On my arrival to the hospital it didn't take long to get urgent medical attention. I had a feeding tube placed, saw a surgeon and was told that if I had come any later i would be dead within the next 2 weeks- a little scary for a 19 year old to hear, right?
I was told that I needed my colon removed, I had Ulcerative colitis and I needed to get a stoma for a year. A stoma? what is that? Those were my thoughts- I had a stoma nurse come and see me before my surgery to talk me through the process and how to live with it. I saw my mum burst into tears so it was at that moment that I felt I had to stay string for my family. Throughout that meeting I took it all in for sure but I had made the conscious decision that I was not leaving my room for a year because EW! Who poos in a bag, thats so ugly and gross. When my mum left, I burst into tears and called my best friend, Ali. She came and saw me straight away, assuring me that everything was going to be okay and that she would be there every step of the way, and she was. She is and was my angel throughout the whole process.

2 months later I was released from the hospital and adjusting to this new way of life. I will admit, it took me months to accept what had just happened and how life was going to be for the next year.

To be honest that year flew by and before I knew it it was time for my reversal surgery and for me to join the J-Pouch gang. Everything was meant to be fine after this right? WRONG! None of my symptoms went away, I was still going to the toilet 20+ times a day, not absorbing food, not absorbing my pills and still loosing weight. I had frequent appointments with my specialists and we couldn't figure out what was wrong. Multiple tests, scans, procedures and they weren't sure. It finally came to the conclusion that not do I only have Ulcerative colitis, but I also have Crohns disease- so whats that? 4 invisible illnesses at the age of 20? 

I lost all motivation to live life, to succeed, to get out of bed, my mental health declined drastically over the next 5 years and during all this time was getting intense liver pains so of course more scans, tests, procedures and I was told I have another disease called Primary Sclerosing Cholangitis- a disease in my liver that blocks the bile ducts. I was told that in the next 2-10 years I will need a liver transplant. Boom my mental health dropped below the lowest of low and here comes my first suicide attempt. I lost weight, didn't eat, didn't socialise, didn't get out of bed and before I knew it, I was back in hospital in 2021, weighing in at 45kgs with a feeding tube. It was COVID and I was allowed no visitors, once again my mental health dropped- I was discharged and a few weeks later came my second suicide attempt. It was at this stage that I knew things needed to change quickly. With the help of my now partner, Conor, I got therapy, Moved with him to the Mount, started the best job in my life with children and I couldn't be happier. I have since got my Stoma back because i realised that my life with a stoma is so much easier, I am healthier and happier.

I am in the best place I have been both mentally and physically and I want to start raising awareness for invisible and chronic illness. I have accepted my life and that I am a little different to others but I want to advocate for others beginning their journey and for those struggling to accept a new way of life.

This story is a major 'Long story short' situation as if i was to write everything I would be here for years and so would you reading it. If you have got this far- thank you for reading my story! I hope it has helped you in some way or it can inspire you to share your own story.

This will be a blog of my life and I will share updates and stories of my never ending journey and fight with a chronic illness.

So much Aroha (love) for you all,

Ally G xxx