She

Yesterday I was very honoured to receive an award for a piece of writing I did for International Women's Day. I wrote it about all the women who have inspired me. I want to dedicate it to every single woman in my life who has stood by my side over the past few years. Every piece of advice and words of encouragement you gave me managed to pull me through the bad times. Without you I wouldn't have been able to write this.Thank you ❤️

She

The woman who has inspired me the most, is the one who stood beside me through thick and thin. No matter what has happened to me, she has always been there.

When I lost my three-month-old son Charlie to meningitis, she held me tightly in her arms as I cradled his body. She was a beacon of light during the depths of my grief and held the pieces of my broken heart together. She told me that his death wasn’t in vain. She urged me to ‘turn your loss into a positive and use it to help others’. She gently encouraged me to write about him, to share his story and try and save other lives by talking publicly about our traumatic experience.

She was the constant hum in my ear, whispering ‘you can do this, you can make a difference’. She gave me the strength to get out of bed each day when all I wanted to do was to curl up into a ball, cry myself to sleep and never wake up again.

She didn’t let me down, instead she pushed me harder and harder until we reached millions of people, raising awareness of the signs of this potentially fatal condition. Her support was unfailing, telling me I was capable of much more than I could ever believe. Together we achieved incredible things and for a brief moment life was magical.

She was there when I found out I was pregnant with my daughter and shared my emotional delight, comforting me that everything was going to be ok this time. She smiled knowingly, as she said this baby was a gift from Charlie. In her heart she knew that he had sent his little sister down, to help heal some of those terrible wounds I had suffered.

When I became seriously ill, she was still right next to me, my very own cheerleader. She told me I was more than just my illness. She was convinced that I could turn my disability into another way to do some good and that I shouldn’t let it take over who I was. ‘It is just a part of your body that isn’t functioning, but it doesn’t define you’ she reassured me. She said I had a public voice now and I should use it to advocate for other people, those who were in the same boat that I now found myself in. Yet again, she knew me better than anyone else and had a way of pulling me through. 

As I questioned myself over and over, she asked me if I wanted to give up? Knowing full well that giving up wasn’t part of who I am. She was the only person who could say that to me, as she knew exactly how I would answer. No, I wouldn’t stop, but I would do as much as my body was capable of. I couldn’t do much physically, but her words were enough to keep me going, even when my body let me down.

When I fell into a deep depression, there was that whisper in my ear once more ‘you are enough’. I shook it off and ignored her, as I couldn’t believe that it was true. I wasn’t enough, I was a burden to everyone because of my disability. She wouldn’t stop though, she kept going and going until the words finally filtered into my brain. Eventually a flicker of light shone through the tunnel of darkness, pulling me back from the brink once more.

She told me just to be me and let my personality shine, but once again I didn’t listen. That was the hardest advice to take from her. Being yourself is one of the most difficult things to do in life, to let down the fortress around you and allow people in. She loves me though and accepts me for the person inside. She said, ‘dance in your wheelchair, sing songs really badly, make people laugh, be the natural show off that you are and write...oh please write!’

So I did. With great trepidation I wrote down my innermost thoughts and dreams. I shared deep, personal things with complete strangers, and you know what? She was absolutely right! She knew exactly what was best for me. It gave my confidence the boost it so desperately needed and she lifted me out of some of my darkest days.

Today I looked over at her, to see her smiling back at me, like a proud parent to a child. She is the person I will always look up to, the person I want to be.

She is my inner voice. She is me.

My Adrenal Insufficiency Diagnosis Shows Us Why Awareness Months Matter

April is Adrenal Insufficiency Awareness Month and, as luck would have it, I have just been diagnosed with it.

I have seen many consultants and health professionals over the past 15 years, but I never felt my issues were being taken seriously. I was beginning to think I’d never get answers as to why my health was so bad. I worried I’d be stuck in this situation for the rest of my life, or even worse that I’d lose my life if we couldn’t get to the bottom of it.

This year my health started to deteriorate very rapidly. Twice I have been taken by ambulance to hospital, barely conscious and unable to speak or respond. My life was slipping away and I felt powerless to do anything about it.

Thankfully I have a great team around me, including my husband and my Dad, who advocated on my behalf and pushed for further tests. One of these was with an endocrinologist who, amongst other things, tested my cortisol levels. Less than 24 hours after having the blood test done, I got a phone call from the endocrinologist himself to say it had come back abnormally low. The next step was to have a morning cortisol blood test as this is when it should be at its highest. Again, it came back low.

Finally, I was getting somewhere. My endocrinologist was brilliant, very proactive and started me on medication within days. I still had one further test which would confirm or rule out a diagnosis, but a national shortage meant that could be some time.

Four weeks later I was called in to have a short synacthen test. This is where they inject you with a synthetic hormone and see how your adrenal glands react. I failed it so badly that I got an urgent phone call from another endocrinologist the following day, to say it had come back very low and I needed to be on medication immediately. Thankfully my original endocrinologist had already sorted this and I continued with the medication I had been taking.

So, I have now been diagnosed with adrenal insufficiency. There are two main types, primary and secondary. Primary is also known as Addison’s disease and secondary is often caused by a pituitary tumour or long term use of steroids for conditions such as asthma. Although I haven’t had confirmation of which type I have, I understand this may possibly be linked to my asthma inhalers. This is an unusual response and is in no way a reason to be wary of using inhalers. I am hoping to learn more about this once I have more information on my condition.

The main danger of adrenal insufficiency is going in to an adrenal crisis. This means your body isn’t getting enough cortisol and if untreated can lead to coma and death. Scary stuff, right? Yes, it is and a lot to get my head around but the most important thing is that it is a manageable condition.

I need to learn about my body and what dose of medication I need to keep myself healthy. The key is to look at how my body reacts to situations and know when I need to take extra medication to try and stop an adrenal crisis before it becomes a life-threatening situation. There will be times when I won’t be able to stop it and I will have to put things in place, so those around me know what to do in an emergency.

As with any new diagnosis I have a lot to learn and a lot to process but as someone who has been ill for so long, I see this as a positive step going forward. I’m not going to get better tomorrow or even in a few weeks but there is a glimmer of light at the end of a very long tunnel.

The journey is far from over, but we now have the right tools to start to tackle it. As with anything condition I come across, I’ll do it in my own style! I’ll be open and honest about my life with a chronic illness as I strongly believe that this is the best way to educate people into seeing beyond the highlights reel we all show on social media.

There will be many ups and downs and tears and frustration, but I think it’s important to share those moments, just as much as I share the enjoyable ones. Life isn’t perfect for anyone and everyone is facing their own problems. That is why I believe awareness months or days are vitally important. It gives people an opportunity to say ‘me too’. Adrenal Insufficiency is a little known condition and very few people know about the dangers of a crisis, so raising awareness could potentially be life saving. Together we are stronger.

This blog was first published on the Huffington Post UK website here.