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. 

Positive Thinking Can't Cure Chronic Illnesses Alone

I recently read an article about a celebrity who suffers with a long-term health condition who used ‘positive thinking’ to overcome it. They mentioned that they were now living a full and happy life after being in chronic pain for many years.

 

I also have many chronic illnesses, some more serious than others. My friends would describe me as a very positive person but with the best will in the world, positive thinking can’t cure me.

Just today, I desperately wanted to spend time with my children, but I was unable to get out of bed. I tried so hard to get up, but I fell, twice. If wishful thinking were a cure, then I’d be running miles every day. Sadly, I am stuck in a wheelchair, watching life go by from the sidelines.

 

It has made me rethink my own language when talking about my conditions. I use the word ‘fight’ a lot but if fighting were enough then I’d be better by now. It’s the same with cancer. People don’t lose their battle with cancer, they die from it. It wasn’t from lack of effort on their part or mine. I didn’t lose my battle to get out of bed today, my body was just physically unable to.

 

There are very few people in this world who would choose this life. I have friends with chronic illnesses who are struggling just like me. We don’t want to be ill, we just want our lives back. I want to be able to take my children for a day out on my own, or just walk out to the local shop to buy a loaf of bread. Things that many people take for granted.

 

It’s frustrating to hear celebrities with an influential voice talk about overcoming these obstacles. I’m very happy to hear that they are living a better life, but I’m sure they had the help of professionals that I don’t have access to. It makes it more difficult for the rest of us to convince others that we really are trying our best. The general feeling I get from people who don’t know me well, is that if I just tried that bit harder, then I’d be fine too. Unfortunately it doesn’t work like that.

 

I’m sure many people have heard of the spoon theory but if you haven’t, then it is based on the idea of that we all start the day with a certain amount of spoons. A typical person, who is not chronically ill, will use a small number of spoons on each task. For example, a shower make take one and getting dressed another. Simple tasks are easily completed, and most people wouldn’t think twice about them.

 

For someone as disabled as I am, there are many days where I wake up with barely any spoons. Coming downstairs is a huge achievement and takes up most of my energy. Getting dressed takes several spoons for me, so I don’t usually bother and stay in my PJs! I use them wisely and sparingly, so I have can spend small amounts of time with my children.

 

Our language and conversations need to evolve around the issue of chronic illnesses. There has to be more understanding that we don’t want to live this way and many of us would give us anything to have a ‘normal’ life. Although positive thinking is always a good thing, it isn’t a magic wand. If only that were the case.

This blog post was first published by the Huffington Post UK here.

My Mental Health Resolutions for 2019

I’ve never been one for making New Year’s Resolutions, but I had a difficult end to 2018 and a very challenging start to this year, so I decided to work on some mind goals for 2019. My physical health has been particularly bad recently, which I have very little control over, but I can set goals for my mental health. 

The most important thing for my mental wellbeing is to remember that I matter. As a physically disabled person with carers and a whole team of people who look after me, it’s easy to feel like I’m just a burden. A waste of everybody’s time and energy. It’s very frustrating for me and I lost myself for a long time. I felt I had no purpose in life. I wasn’t a wife, a mum, a daughter, or even just me, I was just somebody who needed looking after. Writing has given me back a purpose in life and my life does matter. I matter. 

Secondly, I want to be able to put my mental health first and let go of negative influences around me. I have to self-preserve and put up some barriers and boundaries. I have a love/hate relationship with social media. It can be used for so much good, but it has also caused me a lot of pain. This year I will allow myself to let go of anything that is detrimental to my mental wellbeing.

I am in charge of my life. This is a very important one too. As I mentioned earlier, I have little control over many aspects of my day to day life due to my disabilities, so I must take control where I can. I can use my time wisely. I have plenty to say and a platform to put that to good use. I can stand up for people with disabilities. I can use social media for positive reasons and campaign for charities. I can write books for my children which makes them happy. I can be useful. I can make a contribution to this world. 

I must pursue my dreams and not give up. Society views disabled people as a drain on society but I will prove them wrong. There is nothing else I can do but write so I will chase my goals. Success is what you decide you want to be so everyone’s achievements are vastly different. My idea of success is not based on what things I want to have but the person I want to be. 

I will also keep fighting to get the healthcare I need. I won’t let the consultants give up on me. So many times I have wanted to give up but I get back up again. Figuratively speaking, as I can’t stand up without falling! It’s very difficult to find the mental balance between accepting yourself as a disabled person but also fighting for answers and the right treatment. 

Finally, the most important task this year. I must be me. I will be 40 later this year and accepting my faults, quirks and eccentricities’ is the biggest task ahead. My abilities and disabilities all make up who I am and that is the biggest key to good mental health.

Happy new year everyone!

How You Can Help Bereaved Parents Like Me Get Through Christmas

Christmas is a really tough time for bereaved parents. It doesn’t matter whether it’s your first Christmas without your child or your tenth, it’s a time for families to be together and there is always somebody missing in ours.

 

We have an 11-year-old and a seven-year-old, but we always include our late son Charlie in our Christmas traditions. Every year, without fail, we have three stockings hanging up on the fireplace and a decoration with his name on up on our tree. One of our friends very kindly bought this for us and it is just one of the ways you can support bereaved families at Christmas. My Dad always sends a card for Charlie and hangs a ribbon on the Meningitis Now tree in memory of him. It is gestures like this that make us feel he is still recognised as part of our family.

 

I would strongly suggest including their name when you send Christmas cards or messages. Even if you just write something like “and remembering Charlie” or “Charlie is always in our thoughts” in your card, it will make a huge difference to someone who has lost a child. I know people worry that they will bring up an upsetting memory by mentioning him, but believe me, it’s never something we can forget. Charlie is on my mind daily, so other people acknowledging him doesn’t bring up anything that isn’t already in my thoughts. It actually makes me happy that they’ve remembered him and included him.

 

Many of our family and friends donate the money they would have spent on a Christmas present for Charlie to his charity. Again, this is a positive move and shows us you are thinking of him, whilst also giving money to a good cause in his name. A lot of people now donate to charity, in lieu of sending Christmas cards. If you don’t have ties to a particular charity, then why not ask a bereaved family if you can donate to one of their choice? It’s another way of recognising their loss and showing your support.

 

I can’t speak for all bereaved parents, as we all have different views on it, but if in doubt, ask. There’s a big fear about speaking to someone about their child who has passed away, but for me it’s a release and I’m always happy to talk to people about him. I lost many friends after Charlie died because they avoided me, they didn’t know what to say. I don’t care if you say the “wrong” thing, if at least you have made an effort. I do care if you cut me out of your life because you feel awkward, or cross the street so you don’t have to talk to me. That is something I won’t forget.

 

Even if you don’t have the means to donate to a charity or give a gift, then just be there to listen. I have good days and bad days around Christmas. There are times where I feel lucky to spend time with the children I do have and then occasions when I feel angry that I don’t get to have all my children with me.

 

Sometimes remembering the child who is not there is the greatest gift you can give to a bereaved parent. If you make an effort to include them at Christmas time, then you might just make a difficult period that bit more bearable. 

 

This was first published on the Huffington Post UK website.