Cushing’s & Mental Health

It’s Mental Health Awareness week 2018 and whilst I do think it’s fantastic that the world is beating the stigma attached to mental health and giving people the opportunity to tell their stories, speak up and raise an incredible amount of awareness, I also think there are some people that are crying wolf and jumping on a bandwagon because it’s ‘cool’ nowadays (I’ve seen it a lot recently). It’s absolutely vital for people that are suffering to ensure their voices are heard, shout your story from the rooftops if you can! I am pretty open about my health journey and I’m not doing it to gain a pity party, I simply wish to raise awareness of a relatively unknown and rare disease and the damage it can do. I have had first hand experience with depression, and crippling anxiety since 2011 and it will always stay with me (literally, my brain has now changed shape!), it’s not something I can just shake off but I do try my best to remain positive. 12 months ago, I was planning my own funeral and saying my goodbyes to my loved ones, but I am still here, my life is the best gift I have ever been given and after losing quite a few Cushie’s recently, I can’t even begin to explain how critical it is that sufferers ensure that they get the help they need and on time.

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Cushing’s, both from tumours and taking steroids have severe mental consequences, as well as physical; not only due to the high levels of cortisol but also due to the extreme changes to a persons body and the impact that this has on self esteem.

For me, cushing’s took its toll mentally both pre and post op. As said in my blogs (extract below), I always try to be positive and look on the bright side; often it is painting on a smile, pretending I’m ok and pushing my worries to the back of my mind. Even now, a year after my surgery, I still find it difficult to concentrate and can’t get rid of my brain fog. This is because chemicals and overproduction of cortisol for such a long time has actually changed the shape of my brain and it’s likely that my brain will never return to its ‘original’ state, so I can kiss goodbye going back to University! But, now, I’m cool with that.

For everyone going through this experience, whether you’re in the early stages of testing, pre op, post op or in complete remission, it’s ok not to be ‘ok’. After years of beating myself up, trying to ‘get a grip’, I am finally at peace with how I am and so can you. So what if we aren’t the same as we were before we were diagnosed, life is a beautiful gift and we need to appreciate every single second. Our brains have taken an absolute hammering; both overproduction of cortisol and cortisol withdrawal are seriously tough on us, mentally as well as physically.
Instead of comparing myself to other people who have had Cushing’s and almost feel bitter because they’re recovering at a faster pace, I now tell myself that everyone’s journey is different, no two people are the same and I’m taking my time to recover, this is my recovery, no one else’s.

Cushing’s causes many mental problems, including panic attacks and feelings of doom, depression, fatigue, irritability, nervousness and sleep deprivation. In severe cases, psychosis and depression requiring hospitalisation are not unknown. Mania and even euphoria are other possible outcomes, along with brain fog and forgetfulness. Over the long haul, cortisol can affect the brain negatively, leading to a high risk for Alzheimer’s and dementia. Cortisol withdrawal occurs when a patient is being tapered off replacement hormones following surgery while awaiting recovery of the hormone system which regulates cortisol. This system, the hypothalamic-pituitary-adrenal axis, may take months or years to recover after removal of a tumour. People experiencing cortisol withdrawal often feel extremely fatigued and have severe muscle and joint pain. In an extreme case, the body experiences a crisis in which a person has nausea, dizziness, severe fatigue, and may actually be at risk of death.

The best message that I can give regarding Cushing’s and mental health is appreciate every single thing that you have that is good. Being ill is a learning curve and I have learnt so many important lessons within the last 6 or so years; I try my very best to make the most of life whenever I can.

Anyone that is suffering alone, beating themselves up for feeling a certain way and not understanding why, having suicidal thoughts, acting out when they don’t mean to; seek help. See your Doctor, speak to a family member or a friend. If that isn’t an option, I welcome anyone struggling to message me; I’m not a medical professional but I can somewhat relate on a personal level. Cushing’s patients should never hesitate to seek counselling or psychiatric care.

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“You see, when people look at me, I look fine, I look like I don’t suffer, but it’s invisible. Also, a lot of people, even those that know me, don’t understand the fact that I am still unwell, 10 months after my tumour was removed. I’ve been told, it could be as much as another 4,5 or 6 years before I even start to feel better and it’s highly likely that I will have to take hydrocortisone for the rest of my life and frankly, that terrifies me. A cold or a sickness bug could literally kill me. I have compromised my recovery more often than not, by overdoing things and not listening to my body.

Figuring out what my new ‘normal’ is and fighting anxiety became too much for me last week. Most days, in fact, almost every day, I rise above how I feel deep down, paint on a smile and tell everyone I am fine. But, I couldn’t hide it anymore, I spent 90% of the day in tears and I finally admitted that I wasn’t OK. And this is mainly the reason why..

The majority of people have parts of themselves they’re not fond of. Whether it be their hair, stomach, skin, legs etc. But, that is completely normal, it’s called being human!

However, there’s something else, something more than not liking a particular part of your body, it’s more than feeling anxious about the dress you’re wearing, it’s more than having low confidence, or low self esteem. It’s being trapped in a body you STILL don’t recognise, it’s hiding in oversized clothes, avoiding mirrors, obsessing about the way you look. It’s body dysmorphia. I’ve always been shy and never been one to flash my body around but I have become obsessive about my appearance and what other people think. Most of the time, I don’t want to socialise because I feel so uncomfortable in my own skin.

I have lost weight, people tell me I am beginning to look ‘normal’ again. But, that’s it, what this whole post is all about, I will never be ‘normal’, so how can I ever be happy in my own skin?

As well as all of this bubbling away in my brain, I have also been struggling to sleep for months. I honestly can’t even remember the last time I had a proper nights sleep. When I wasn’t sleeping, my brain was constantly baffling me by bringing up horrible memories I have from my past. Things I haven’t thought about in a long time and I honestly thought I was going crazy. I was getting upset over things that are done with, things that I shouldn’t even worry about. I also couldn’t stop thinking about the fact that I almost died. Literally.

Anyway, cut a long story short, the body dysmorphia, the weird daydreams and the fact that I seemed to be taking steps backwards and I felt I was going crazy all came to a head on Monday. After spending the best part of 2 days to get to the bottom of all of the pain in my leg, I was told I had a blood clot in my right leg. On the way home from the hospital I started to cry and I didn’t stop for hours, my Mum came over and nothing anyone could say could make me feel better. I ended up going to the Doctors, who of course, threw anti depressants at me, that’s what GPs do, right?

I have zero problem with antidepressants and I know they tend to have a bad reputation, some people’s brain chemicals don’t sync with their bodies and it is OK to admit you need some help. If you’re battling a mental illness that requires antidepressants, don’t let anyone shame you for it – if it is a method that works for you and your neurotransmitters, then get some help so you can live your life. I also encourage anyone that’s feeling low to talk, it’s the best type of therapy in my opinion. Don’t bottle up your emotions and let them consume you.

Over the course of the week, I spoke to my consultant and thought about things rationally. My consultant informed me that due to my brain changing shape, it is likely that I have PTSD, which does make a lot of sense. I also realised that I can’t bottle things up anymore. I did initially as I didn’t want to be even more of a burden to Daniel and my family.

I’ve decided that I’m not going to take the tablets, as I’m not unhappy, the chemicals in my brain related to my happiness are perfectly fine, which I don’t think many GP’s seem to understand and as soon as they see someone that seems a bit down, they put them on a course of tablets that’re so unnecessary. I’m literally the happiest I’ve ever been, I have a loving husband, my own home, a beautiful dog and an amazing family support network. It’s simply part of my recovery , the fine balance of getting my hormone tablets right and the fact that when I am poorly, my body doesn’t have a stress response of fight or flight.

Once I let all of my emotions out, I felt better. We have a holiday to look forward to and an amazing future together – my career plans may be on hold for now, but I have a lot of determination and I will get there.

For now, I am focussing on myself. I will tear down these walls around me eventually and prove to myself that even if I will never be ‘normal’ again, I can still achieve my dreams.”