My battle with cyclical Cushing’s disease began in September in 2012. Cyclical Cushing’s disease comes in cycles which meant sometimes my body went through stages where my cortisol levels are so high it destroys my body, then I would go into remission, so my body began to heal before shutting down again. In May 2017, I said goodbye to the old me and had the brain tumour removed.
I am almost nine months into remission. It feels like forever since my surgery, but every day I am reminded of it, it seems that for all Cushing’s survivors, it is something that lingers with us forever. I really feel that I am mentally healing. The physical aspect of healing will take much longer due to the Cushing’s destroying my bones and my muscles so it will be a while before I can go on long walks or even go on a night out without feeling like I have been hit by a bus. However, I do feel that I finally have my life back.
It took an entire eight months to regain some control over my body, which was quite disheartening as I thought that a few weeks post surgery and I would be able to lose weight instantly, brush my hair without clumps falling out and fit into clothes that I wore before I became ill, but the reality was far from that. For me, one of the hardest symptoms to battle was the weight gain and changes in my appearance.
The even harder and most draining aspect of that was the emotional side. For everyone to say that I shouldn’t focus on the weight gain because ‘size doesn’t define me’ was really tough. I understand that, but I couldn’t forget how I looked on the outside- how I looked to other people. The humiliation and shame of trying to explain to people that ‘I don’t really look like this, it isn’t my fault’, especially before I got my diagnosis, swallowed me whole on a regular basis. Going out with friends was, and still is sometimes, a struggle.
After almost nine months of constant and repetitive testing and trialling different doses of hormone medication, I am finally starting to feel like myself again. I must take hydrocortisone as my pituitary gland went from creating too much cortisol (from the tumour) to creating basically none at all. I will be on this medication for the rest of my life. I’ve made quite a lot of errors along the way, mainly pushing myself too much to try and get better quicker, but eventually I have given in and listened to my body!
All of this has really made me re-evaluate what is important in life. And mainly, who is important. It is important to remember that no one has the same Cushing’s journey, we suffer from different degrees and in different ways but we all have the same problems!
No matter what your journey has been like, where you are in your diagnosis or recovery period, we are all warriors, we have all battled with something that is almost unimaginable and so difficult to understand and we should celebrate together that we have the determination, resilience and strength that many would struggle to comprehend.
I can only hope that now, after receiving the right medication, that my recovery can finally begin and I can start to heal properly. I still have a lot of specialists to see, but I can face whatever is thrown at me.
I have started the year feeling incredibly positive and I plan to continue this positive streak for the rest of 2018. Recovery is, in some part, a whole other hell, it’s certainly anything but linear. But, I am determined to make this my year.
My name is Amy, I’m a 25 year old History graduate from Pontefract, West Yorkshire. I enjoy music, books, beauty and travelling.
Unfortunately, since 2011, I have been battling a chronic illness. Until early 2017, I was a ‘medical mystery’, undergoing countless tests and passed from pillar to post to different departments, hospitals and specialist consultants. I was finally diagnosed with Cushing’s disease in 2017 and underwent life-saving brain surgery on 8 May 2017, removing my tumour but resulting in adrenal insufficiency.
This journey has changed my life and I am now a dedicated and passionate rare disease advocate.
Amy has set up a website to raise awareness and help Cushing’s disease patients: www.cushingsjourney.com