Amy’s story.

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When you’re struck with a life changing, debilitating illness and disability, it’s a tough pill to swallow, knowing that going forward, your life will never be the same ever again. For me, cushings disease has caused a multitude of further illnesses and problems, which I don’t really talk about, some of them, I’ve been a bit embarrassed by.

Due to the aforementioned, I find it difficult to live a ‘normal’ life, life hasn’t exactly been normal since I was in my late teens, sometimes, I struggle knowing this. Needing to readjust to a body and mind that does not work the way it used to can leave you reeling, leave you grieving a life that is limited in comparison to before. So many suffer in silence, faced with stigma in a world that idolises health.

Living with a chronic illness and/or disability means that each day you wake up, not knowing if you will be able to find the energy to even deal with the smallest of tasks. If you choose to go out, you know that you are sacrificing the next few days, if you go out, you may have to go home earlier than expected because of pain, fatigue, anxiety etc. Do you even want to go out anymore? Do people think I’m not sick if I go out and put a bit of make up on? The sad reality is that yes, so many people judge and assume that because you’re doing something for once and have made some effort with your hair and make up, that you must be miraculously better. I sincerely hope that those people are reading this, that those people open their minds and try to understand.

Amy Bojar

These photos were taken days apart. The photo on the left with the puffy red face is the aftermath of simply visiting relatives and doing a little bit of shopping.

The most frustrating and upsetting thing after being struck with something so debilitating and life changing is seeing others do things that you desire to do. You are constantly in a battle of guilt and worry; do people see you as lazy? Are your friends and family seeing you as unreliable because you cancelled those plans again?

A lot of those who suffer, including myself, constantly worry about the impact on the people you love. You may lose contact with friends and family over your illness, which may increase your desire to be ‘normal’ again. However, your true friends and family will understand how your illness is beyond your control and will ride the waves with you. One of the hardest things to accept is that you may have to rely on others more and this involves learning that, actually, it’s ok to allow someone else to love and care for you when you need it.

A huge lifestyle change is often needed and it can be incredibly limiting and will often teach you the importance of self care and listening to your body. It may feel like the illness is controlling your life, but changing your mindset to realise it does not define you is freeing. Life isn’t fair, it really isn’t but, with any chronic illness or disability, you can still play the best game you can with the cards that you’re dealt.

Cushings and Adrenal Insufficiency have completely changed my life, I’ve opened my eyes and I don’t take anything for granted anymore. I am still grieving my old life in some way. I wish that I could work a regular Monday to Friday 9-5 job, go out every weekend with husband and my friends, plan days and nights out weeks in advance, not thinking if I’m going to be well enough or not. I grieve my old body, I definitely grieve my old mind, before I had my brain surgery, before my brain changed shape, causing cognitive impairment that is likely to turn into early dementia, I had an offer of an MA Scholarship in the USA and a dream job in Dubai. I wish more than anything that I could have taken those opportunities. However, I am so incredibly grateful for my second chance. Most of the time, I try to remain positive and make the most of life, as I most definitely now see it as a precious gift.

The words I share above can hopefully help those who are isolated, I am trying to give a voice to those who persevere through chronic illness and disability each day. Everyone has their own unique life and no two journeys are ever the same. I want people to feel less isolated and even empowered knowing that you CAN lead a life of fulfilment, despite limitations.

More information on cushings and AI can be found on my website – shouldifallbehind.com

Amy @ TEWP x

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