I am almost 9 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.
This post is going to be something a little different to my previous ones. It’s going to be a somewhat cathartic release of my inner most thoughts. I’ve been trying to steer clear of stress for the last few months but life continues to rain on me and my family, so it is a little tough but I do believe that after battling Cushing’s for so long, my body became accustomed to my stress hormone being 1000s of times higher than normal, so to not feel slightly frustrated or stressed, seems almost unnatural.
Since my last post, I have seen my ENT and had a few cameras up my nose, a CT scan and been given some nasal sprays and I have been clear of infection for over a MONTH! I also had a scan on my liver that has shown further abnormalities, so I am seeing a specialist this week and also a ‘lady doctor’ in a few weeks to further test my fertility as it is likely after having the menopause at 24, that I will be unable to conceive, but you know, miracles can happen! Christmas and New Year I did spend feeling absolutely horrible! BUT, touch wood, 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 8 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 emotionally draining aspect of that was the emotional side. For everyone to say that I shouldn’t focus on that 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. A battle between two Amy’s inside my head. I might manage to convince myself that I look ok before I leave the house, but when I left, I resigned to what I thought, was the truth. After almost 9 months of constant and repetitive testing and trialling different doses of hormone medication, I am finally starting to feel like myself again, it’s an unexplainable feeling because, of course, I have always been me, but I now don’t catch a glimpse of myself in the mirror and become overwhelmed with the feelings of disgust, despair and hopeless desperation. I have lost 2 stone in weight since Christmas and close to 3 stone in total since my operation, without any change in diet (apart from cutting out meat) or exercise and I am starting to fit into some of my old clothes. I still have a long way to go to look how I want to look, but I am not putting my body under and unnecessary strain to try and make it happen fast. 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! I do often wonder how Daniel has put up with my instability over my appearance, he’s managed to be my rock when I absolutely loathed what I saw in the mirror and loved me unconditionally, all while I am learning to love myself.
Unfortunately, I will forever be plagued by the ghost of my ‘buffalo hump’ on the back of my neck as I do have scoliosis (curved spine), but I am trying my hardest to walk straighter and help my posture.
All of this has really made me re-evaluate what is important in life. And mainly, who is important. I’m not rushing into going back to work full time, I am focussing on my recovery and using my time to write and raise funds and awareness for The Pituitary Foundation, also working part time. Since our music festival in November, Daniel and I have had so many ideas for fundraisers and have been approached by a local bar to host a quiz and music night on the last Tuesday of every month and all proceeds will go straight to the foundation.
I do plan on going back into further education in 2019, but things may change before then!
I have been approached by hundreds of people since I started my blog and there have been so many supportive messages, some have been horrible but there’s always going to be internet trolls, I guess! I will reiterate what I have said before but I will say it again, I am not a Doctor and I can’t diagnose or give you medical advice, but I am always open to give advice on recovery, diagnosis and I can tell you about my journey. However, 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! I have definitely found that a tough pill to swallow throughout my diagnosis and recovery and have sometimes become almost bitter and jealous when I read about speedy diagnosis and speedy recoveries. But, that feeling and thought disappears as soon as it comes. 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. We have a lovely few months planned; gigs, a mini break for Daniels birthday, weddings and Mexico in April!
Recovery is, in some part, a whole other hell, it’s certainly anything but linear. But, I am determined to make this my year.
Again, I thank every single person for reading my rambling words, I really do! I’ve now reached 1.3 million readers in over 25 countries!
If anyone needs any help, advice, or guidance, please visit http://www.pituitary.org.uk