Muddy Jukebox - October 2019

This song has been chosen by Keira, who is part of our Muddy Care mini-pilot participant group. Keira has had to deal with monumental health challenges that includes heart conditions. From having a heart condition myself, I fully empathise just how scary this can be. However, Keira doesn’t let it hold her back in any way or form. At the age of 28, Keira has multiple chronic conditions, not just her heart conditions. She is vivacious, courageous, ambitious and her honesty in this piece is a true illustration of the level of the strength of inner character through her complete openness towards her own vulnerability.

It is a massive step forwards when ‘we’ the chronically ill, finally open up about our inner struggles and how difficult our challenges really are, physically, mentally and emotionally. ‘We’ can really struggle to be open about our health challenges as judgements are made so easily about us. The truth is though, the right people will never judge. They will support, care and help you to see the sunshine again.

Well done Keira. This took guts. We, the Muddy Care Sunday family, are all so very proud of you for doing this.

Keira is exactly the type of person Muddy Care CIC was set up to provide a service for. So, from all of us at Muddy Care CIC, thank you Keira for writing this and believing in Muddy Care. Next time I watch ‘Frozen’ I will think of you.

Claire X

Let it Go

By Keira

The song 'Let it go' is infamous thanks to the film Frozen. It is extremely catchy, children love it and the film is a classic, but for me, the first time I watched this film and heard that song, it resonated with me, like no song ever has. I felt very emotional hearing it and felt like the song was talking to me.

I was in my second year of university when I heard this song at the cinema. Although I was loving university, I was finding it very hard due to a mass of unexplained symptoms. I was passing out in lectures, in the corridors, in shops. I was dizzy all the time, my heart was racing, my blood pressure was very low and I was so tired. I ended up being taken to hospital multiple times by ambulance. My tutor had to catch me as I passed out and was about to fall down the stairs whilst on a trip. I had to be admitted to hospital in South Africa, whilst being there as part of my course. I had to finish and submit my dissertation from my hospital bed, the whole time not knowing what was wrong.

I used to be very active and would enjoy walking up mountains, going horse riding and walking hours exploring, but I suddenly found myself unable to walk for any period of time. I struggled with the heat and always felt like I was going to pass out. I was eventually diagnosed with secondary Addisons disease, put on steroids and had to carry my own injection, to admit high dose steroids if I passed out, which my tutor once had to do for me in Africa. But I was still determined to do all the things I used to do, to carry on my university course, go abroad, maintain recovery from anorexia and to ignore signs of my mental health declining. But when I heard the lyrics of this song - 'Let it go, can't hold it back anymore, I don't care what they're going to say' , I felt like this song was talking to me. It was time to admit that I was struggling, I needed help, I needed my family to help me cope with this, that it didn't matter what people would say.

Having struggled seriously with anorexia for 4 years, it was hard for me to admit and accept that I was ill again. I didn't want people to think I wasn't eating again and that was causing me to pass out (which is what one doctor actually said to me!). Instead I told my mum how hard I was finding things and she began to come to my appointments with me and gave me the support I needed to question doctors and ask for referrals. I spoke to my tutor and asked for extra help, which allowed me to miss lectures if I was unwell and not get penalised for it.

I managed to complete my degree and even get a trophy for best in my class and looking back I can see what an achievement that was. The secondary Addisons suddenly went away but I was still left with all the symptoms. My consultant was very good and continued to look into my symptoms. She suspected I had something called postural tachycardia syndrome, a form of dysautonomia and sent me to the Kings college hospital in London for three days and nights of testing, where they confirmed this. This means that my autonomic nervous system doesn't work as it should. I am unable to regulate my blood pressure, which means if I stand up for too long, the blood pools in my legs, causing my blood pressure to fall and for me to pass out. It also means I have difficulty regulating my body temperature, which is why I now struggle in high temperatures and when I'm cold, I find it very hard to warm up and being very cold causes my blood pressure to fall and can cause me to pass out as well.

I have had POTS for six years and I can now recognise the signs that I am about to pass out, so I can mostly prevent it, usually by immediately sitting or lying down. However, I still find it hard to accept that I now have this condition, that I am limited to what I can do, that I am constantly tired and often have to cancel plans. I am still learning to live with this condition and am still learning about the causes, possible autoimmune condition or related to a connective tissue disorder, but by making compromises on things I can do or finding new ways to do things, makes me determined to still try and do the things I like.