Muddy Jukebox - August 2019
First of all, let me introduce myself and the Muddy Jukebox concept.
Muddy Jukebox is a song that not only has a special meaning to someone but has been chosen by a Muddy Care participant or someone closely involved with Muddy Care. The person who chooses the song will write a short piece explaining why the song has a special meaning to them.
Now to me - I am the founder of Muddy Care and I also have several chronic conditions. My song choice is Picking up the Pieces by Paloma Faith. This came out when I was extremely poorly, when my heart was far from perfect, and really resonated with me for reasons I will now explain.
When you speak to anyone who has a serious chronic condition, the beginning of their journey isn’t pleasant. In fact, it is often extremely brutal, so much worse than anyone tells you it is going to be. It was for me and for many I have met on my journey. There is often a very fine line between having the energy to continue to fight to get better and letting the situation consume you because you are just so tired, utterly worn out, feeling so unwell, so lifeless. You are not the old you in any way or form. That person has gone. To explain the true depth of the extreme darkness you will be taken to is not possible unless you have been there yourself. It is unexplainable.
In 2011 my chronic illness journey started, although I wouldn’t be given the chronic label until 2016. I knew it was bad when the paramedic said “oh bollocks” and the sense of urgency changed in their assessment protocol. I knew enough as an advanced first aider that the shit had well and truly hit the fan. The person who left my house and was loaded into an ambulance that November evening came home but she was not who she once was. She was a shadow of who she used to be. I was a different person. I was a ghost of my former self.
For 18 months I endured a very physical battle that broke me in to so many pieces. I was lucky enough to find a rehabilitation programme to help me but I completed this rehabilitation programme against my then consultant’s approval. I had to pick up the pieces that were left behind in every facet of my life after the old me went away. ‘Her’ in this song is the old me, pre illness. She is well and truly gone, that woman who was a Great Britain athlete for four years, that climbed mountains, that made first descents in Iceland rafting over water falls and played in grade 5 rapids globally, that climbed up cliffs, that cycled up and down Skiddaw in the Lake District, that winter climbed in the Scottish Highlands, that paddled to Lundy in a sea kayak to climb, that skied in the Alps. She disappeared from view in November 2011.
When the specialist told me I was going into heart failure in 2012, I put away all the photos of my adventurous previous existence. Some were pushed behind the TV and others went into boxes. I didn’t recognise the person in the photos. It was just too painful. It was a constant reminder of what I had lost… me.
A few of those photos have started to come out now, nearly eight years later. Not many but some. I still think of that person (me pre illness) every now and again, the me who was so physically able but today’s story is far from a sob story. It is a totally different story, absolutely, but in many ways a much richer, fulfilling story.
The beginning of my chronic illness journey was horrendous on so many levels. However, I am in the middle bit now and this is the best part of my illness journey so far as we (myself and my medical team) have finally found a regime that has given me some respite. In addition, I have grown so much emotionally since 2011. And emotional strength is key to dealing with chronic illnesses effectively. I am physically challenged in what I can do compared to my physical capabilities, pre illness. But then again, my normal then wasn’t most people’s normal. My medical CV includes many relapses since first becoming seriously ill in 2011, some very serious (almost complete renal failure in one episode and multi organ trauma), serious damage to my heart, several conversations about chemotherapy, kidney biopsies, cardiac stress tests, long term steroid management and transplant drug management. It hasn’t been a smooth ride to say the least but with every relapse the passion and strength to bring Muddy Care to life has only become greater. Because as my chronic health journey has continued, I have met more and more people who are struggling to cope and are becoming increasingly isolated because of the lack of holistic health and wellbeing rehabilitation support. Ironically our medical help is often excellent. However, when it comes to rehabilitation support services for holistic health and wellbeing, we are the forgotten and neglected.
Left is me in hospital on one of my relapse vacations 😉
Right is me extremely poorly, I almost went into renal failure with this relapse
I love this song. It’s best played very loud and if you can, dance to it. Dance, loud and proud. Even if you are laying in hospital have a dance from your bed or chair. A bit of hospital bed dancing is good for the soul. Lift those legs up and down 😉 I’ve been there and done it several times. I am not flawless. I am broken physically in several ways. I have cried. I have wept. I was lost. But I shine in splendour now because I understand with a gratitude, I think very few people have until you have almost lost everything, how precious every day is. It truly is a gift. Every sunrise or sunset is a reminder of how lucky I am to not only be alive but a reminder to give my life true purpose.
For those of you who feel like you have lost the old you, you are right in part. But please be assured. Some parts of the old you will gradually come back and you will evolve into a warrior. Don’t give up because a new different you will evolve. And that new you will find parts of your life will become incredibly richer than they were before your chronic condition developed. You will have struggles, some very difficult struggles perhaps, but know this, you are not alone. Struggles are part of the chronic condition package unfortunately. Open your heart and mind to not just new possibilities but to a new you. Because when you do that, there is a peace that comes with that. Peace is good for the soul. It brings clarity and energy back into our lives and helps us heal our wounds. And for those of you who are coming onto the Muddy Care programme, welcome and know that from now on, you will have many people, younger and older, who have also lost their old self’s but have each evolved into incredibly inspirational people and warriors.
Claire x