Happy Hump Day! I would just like to say a huge thank you to everyone who has taken the time to read my blog. The reaction and feedback I’ve had has been so incredible from people who suffer with an autoimmune illness and people who don’t, who may or may not know me personally, and it’s totally overwhelming, I can’t even begin to describe it. I am filled with nothing but gratitude and humbleness, and that people actually want more blogs, so I am giving you what you’ve asked for!
This blog isn’t going to be a happy one, although it has a sort of happy ending. It was World Mental Health Day this Monday, so this blog in a way is going to be a head nod to that day and how we NEED to talk more about mental health. All health is important, mental, physical and spiritual, so make sure to look after yourself, Mind Body and Soul!
According to the Kubler-Ross Model, there are 5 stages of grief. Denial, Anger, Bargaining, Depression, and Acceptance. Since my diagnosis, I have been through these 5 stages of grieving who I was, to coming to accept who I now am, hence why I am now blogging! 🙂 So, lets break this down from diagnosis.
Denial or Isolation.
So, when I got diagnosed, I was still riding on my 50mg high of predisnolone. It was like taking speed without the buzz. I only needed 5 hours sleep, I could work through my whole day without getting tired, for the first time in months, I felt GREAT. I’m not saying I didn’t take my diagnosis seriously, but I had never been faced with something like this before so to me it was like “take my tablets, do as the doctor says, I’ll be right as rain in no time”. It was like a lucid dream. I would have a few weeks or a month off alcohol, and reward myself with the odd glass of wine if I was at an occasion or meeting with people at the pub, because I’d been “good”. But when looking back on it, I realise this was me in denial about the whole illness thing. People would ask me how I was and I’d be like “I’m fine! Everything is fine!” when really it wasn’t. I didn’t fully understand what it meant to be chronically ill, I knew it meant for a long time, but I didn’t take it seriously at all. If I felt rage coming into my head from someone or something annoying me, instead of letting it out, I would just remove myself from the situation, go sit on my bed, and just mull it over in my head, which is very bizarre for me as I’m not usually one to bury my head in the sand at all, but the longer I kept to myself, the more the rage built up, until it started to turn into outbursts.
Continuing on from these little angry moments, they got worse. All of a sudden I was mad at the world. Why lord, why did you choose me, of all the people in the world to be diagnosed with this illness? As I’ve explained before, I’m not an alcoholic, but I was your standard 23 year old who liked to go out and party and drink wine with dinner or if I had a stressful day, and yet for some reason, I ended up with an illness that affected my liver. I’m not a bad person (or I try not to be anyway), I have youth on my side, I take care of myself, I kept fit, so why. Why me? I couldn’t understand, it just didn’t fit in my head. After my biopsy and diagnosis, I got told to take it easy, no dancing but I could walk or swim, so not only had I had drinking and partying taken away from me, I had my only other outlet taken away from me. Dance is my way of expressing myself, to get my endorphin’s flowing to feel good. So what do I do now? I don’t know what else to do, that’s what I’ve done since I was two years old? I was totally lost. I got angry at the smallest things. I’d snap at family members over nothing. The worst part of my anger phase was probably being dropped by my insurance, and the sheer panic of not knowing what to do next or how to transfer myself back to the NHS, the whole thing felt like a big old mess. The anger turned into sort of mini break downs that would occur several times a week. At work, at home, whilst in Paris on holiday. I was angry that others could go out and drink freely, and I was serving some kind of punishment so I would just stay home and sit in my head, feeling miserable. It may have been the prednisolone talking, who knows, but I felt like my life was spiralling out of control and there was nothing I could do to stop it.
I am a person who likes to be organised and have an element of control of what is going on in or around my life. So how do you exercise that when you have no control over your own immune system attacking your body for no reason, and no idea what the cause is? In my vast state of vulnerability I started to almost cut myself off from everything, whilst trying to simultaneously gain control of my health. I decided to not go out so I wouldn’t be tempted to drink, so I would stay in and do research on holistic healing. I no longer had my 10 tablet zing, so instead of teaching dance, I would go home and get early nights due to fatigue. I stopped socialising with friends because when they ask how you’re doing, how do you express how you are slowly losing your mind without trying to make people feel sorry for you? I don’t want people to feel sympathy because they have great health and I don’t. I almost forgot what my life motto was “It is what it is”. Then other things run through your mind, “what if I went to the doctors at Christmas, then I would’ve got help sooner and would be further down the line by now” “What if I hadn’t ignored my body’s signs” “If I hadn’t had the odd glass of wine every now and again, I wouldn’t of had that flare up and increase my meds and put on weight” “If only I stuck to a stricter diet” – all this bargaining was just me trying to make myself feel better in my vulnerable state, when really, it just makes things 100 times worse..
I can’t even tell you how many times I have cried and not wanted to get out of bed in the morning. I honestly couldn’t remember who I was anymore. I didn’t want to teach my classes anymore in fear of shouting at the poor girls and boys I taught, and detriment their mental health all because I wasn’t stable, as that is not fair. I felt like I couldn’t speak to anyone at home, as we all have things to deal with, and they all know my situation, so why should I make them feel worse by crying and moaning about where I am currently in my life. I felt like a vessel with a great big grin painted on the outside, but on the inside was just blackness. I’m trying not to cry now whilst thinking about this dark period as I write. This illness and the medication that comes along with it could turn me into the worst version of me at just the snap of it’s fingers. I’d lash out, and then feel even worse, even though I knew it wasn’t me, or like me to be like that, I don’t know where it would come from. There, I’m sure anyone who is going through this or something similar, have been times I have thought what if I just stopped taking my medication and just let this illness takeover? Those thoughts got squashed and pushed out the head very quickly.
There was a good two or three week period, where I cried almost every day, and then one particular day, my dad rang to ask if I was still coming out with him to his pals house for pizzas. He asked how I was doing, and as the tears started rolling, I couldn’t even catch my breathe to answer him. I’d lost control of everything, my life, my dancing, my weight, my health, the Maddison I knew had gone, the Maddison that went out and had fun and let her hair down and didn’t have a care in the world, and laughed constantly, and sang at the top of her voice in the car and was full of confidence, she was gone, and I didn’t know how to get her back. I sat there sobbing, trying to pull myself together. Dad had asked me to get round their asap, but I didn’t feel like going anywhere, til a little voice in my head said “Go. Go get out the house, I promise you, it’s the right thing to do.” I rang my dad back up and told him I was coming and to get himself some beers and me something non-alcoholic to take, I’ll come round and pick him up seeing as I can’t drink anyway so may as well drive. So I went. It was nice to see some familiar faces and just chat and have no pretences. I felt relaxed considering how I’d been earlier. I got to see the lovely Lauren, and we decided we’d go out for lunch at some point over the next week to talk to a. catch up and b. so we could speak about how each other was doing without feeling like we were having a private conversation around everyone without feeling rude.
The first time I started to accept my life for what it is now, was actually after I’d read a friends blog, called Alex Tomkins. I have been watching Alex as she has travelled to some incredible places, whilst also taking her own, very different journey. As she has travelled, she has become a yoga teacher and this has helped her find her inner peace (I tried Hot Yoga once and found it very stressful due to being so unfit, once my fitness is back up, maybe I’ll give it another go). She has been blogging whilst travelling, and one night whilst in my black state, she posted about a blog of how spirituality helped her with her depression, you can read it here – http://www.alextomkinsyoga.weebly.com
As I read, I connected, and with it came the choice of doing something about my lowly state. I needed to regain control, of my emotional state, and after that, my health, and then, eventually, MY LIFE. I instantly messaged Alex about how I felt about her blog and how it opened my eyes and how she made me feel like I wasn’t alone and thanked her for sharing such raw emotions. We all have a journey, whatever it may be, and we take that journey, and we learn, and at the end, you have two choices. I could either sit in my bed and cry all the time, OR I could do something about my life.
My other friend, Lauren, also helped me to accept my life for what it is now. Lauren said “forget about Maddie last year, think, this is where I am now, this is my lot, and so I am going to deal with it, if you have to find other ways to make you feel better, like keeping a diary, taking medication, whatever, do it, if it gives you that peace of mind. In regards to not being able to go out or drink, think of all this spare money and time you have! Learn a language, read a book, take up a course, go on holiday! Just because your life isn’t what it was, doesn’t mean you can’t fill your time”. It took a little time for what Lauren said to sink in, but the more I thought about it, the more I thought, you know what, Lauren and Alex are both right.
To help me keep control of my life, I now keep a bullet journal. For those of you who don’t know what one of those are, it’s a blank book that I can treat as a journal, and style it however I wish, and still keep it fun. So in mine, I write a quote a day to keep myself positive, what mood of woken up in, what my daily tasks are, what I’ve eaten that day, what exercise I’ve done, how much water I’ve drank that day. I try to do 2 litres a day. This way, I keep track of what I’m up to and consuming and what helps me feel better or worse.
Along with all of this, I quit smoking. Sure it’s probably not helped my weight gain, but I feel so much better for not smoking. I have started running to help shift some weight. I try to do 2 kilometres three times a week, some of it’s walked, some of it I run, eventually I would LOVE to run a half marathon, once I really get my health sorted to help raise money for AIH. If I don’t run that day, I walk my dog on my lunch break. This helps me to take 45 minutes to myself, and also have some play time with my beautiful Mac.
I got in touch and saw friends. For so long I shut myself out and in my desperate state, thought nobody cared, when really, I knew this was just stupid, and that my friends did care. We are all adults, we all have lives, and I can’t expect my friends to read my mind and know when I’m down. Now I know to reach out, that it’s okay to reach out, that it’s okay to get out the house and go to the cinema and have a laugh or go down the pub for a non-alcoholic cider, and no one is going to stare at my chipmunk cheeks.
I taught my first proper dance routine for the first time in months this Monday and LORD did it feel good to get creative again! I even managed to have a laugh throughout class! I have finally accepted YES I have an autoimmune illness, YES it can be crap and at times you need to rest, but that doesn’t mean my life has stopped. It doesn’t mean I need to be mad at the world. It just means, I don’t need to be 100mph constantly. We, as human beings, are allowed to express emotion, and are allowed to grow.
I know with this illness and the medication I’m on that travelling could be a slight issue especially when it comes to insurance, but I have decided that I want to go visit Orangutans at some point in the next couple of years. They are my favourite animal, and I sponsor Orangutans in Borneo through WWF so eventually, I would like to go see them in the flesh.
Writing this blog, has also been a great help. That people are reading, and understanding, and want to hear more, and are connecting on more than just one level. That, in itself, means the absolute world to me. To my fellow AIHers that are reading, we got this, guys!
To my family, friends, boyfriend, PDArmy children and parents, fellow work colleagues, old and new, people who have been reading my blog who I have never met before but have left me comments or messages, I am so sorry if you’ve had the pleasure of seeing the steroid monster Maddie, or the depressed Maddie, or the lost Maddie, but I cannot thank you enough for your patience and positivity and support. You are what have kept me going. You are what is spurring me, on to not let this illness rule my life.
The past 6 months have been tough, and not just for me but the people that also surround me, but my new life motto is, when the going gets tough, be tougher. I am not giving up on my dreams and life just because I’ve had a curve ball thrown my way. I feel more determined now than ever.
I apologise now for all the emotion. It needed to be voiced. If you are reading this and are feeling down and out, talk to someone. Whether it be professional, a friend, a family member, even myself, just talk to somebody. I promise you, it will help you feel a whole lot better to get that emotion out. Everyone has their own journey in life, how you choose to react is your own personal choice, don’t be afraid to do things YOUR WAY. It’s okay to grieve, it’s okay to grieve for yourself, but you will come out the other end, and you’ll be stronger than you ever were before.
That is it for today folks. If you have any questions about anything, please do not hesitate to get in contact with me on my contact page, or leave a comment.
Peace and Love!
P.S I’m totally on my way to finding myself again 😉