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FM & Me: an introduction by April Yorke

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Category: Case Studies

Published on Tuesday, 28 February 2023 16:55

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FM & Me: an introduction

To have this opportunity to write and share my experience within this space is an honour. I hope this relates to you and is something you can find truth and comfort in, perhaps even similarity or reflection. Nevertheless if it also evokes no feeling, I would understand and accept that with grace, after all this condition has changed our lives, our new normal, and our existence right? This is real, this is trauma, this is grief.

I’ll start from the beginning and try to keep this as uplifting for you as possible but I can’t promise it won’t become deep and dark at many points for sure, I will always speak my truth, this is my lived experience, my life day to day and I know I am one of thousands, millions who are affected, who are traumatised, who are trying to cope and reinvent themselves just as I am and have been for the last 4 years.

I was once working towards a career in trauma and emergency care within the NHS based on the stroke ward as a healthcare assistant undertaking my further training and studies. A keen runner training for a 10k, hiking with my beloved rescue dog Winnie for hours because I could, because I love it, because life is for living right?

I have had three previous surgeries and surgical interventions for recurrent pilonidal sinus abscesses at the base of my back these were extremely painful and required daily dressing changes. I thought I knew pain before these, I didn’t.

My last surgery was in 2019 and after this wound had healed I was pain free for a year, for me this meant I could actually sit down after almost three years and could walk and run with no pain, I felt like I was really living again, as active and, as I love to be, outdoors and feeling fulfilled as a young woman doing what I wanted with no debilitating pain or physical limits. I felt my strongest at this point after all I had been through.

December 2021. I was on shift at work and felt a sharp pain and pressure at the base of my back and although I was healed from the last surgery in 2019 I was still mindful of symptoms of infection or fluid build-up and so I went to my GP straight away. This was during the pandemic. I was then referred to the urgent care centre the same day. They attempted an aspiration but failed, referred me for an MRI scan, I waited weeks but the pain grew worse, I was inconsolable with pain and so my family paid for me to see my previous surgeon privately. An hugely emotional and helpless time for me.

It was at this visit everything changed.

Laying on the examination table in this private hospital, leg raises and nerve tests, looking at the previous surgical site and the scan, he asked if I could feel him touching my right leg and I could, he then went to my left leg, I couldn’t. The sensation on my left leg and the strength isn’t the same. I was sweating with the pain but also with the panic, what is going on? Why is my brain wanting my toes to move on my left foot and they won’t? My left leg to function as I need it to and to have the strength I need it to and it won’t? My life is going to change, something is really wrong here.

Following this, he referred me down the road of neurosurgeons, physio, spinal surgeons, GP after GP and my pain and symptoms grew worse. I couldn’t work on the wards anymore. I was taking liquid morphine at home and was housebound for almost 4 months. My mobility dramatically reduced, my left side not working as it once did? I am fatigued very quickly on minimal exertion, I have falls due to my left leg giving out at the hip causing injuries, bruising etc… my left foot swells and three toes haven’t been able to bend or move for months, the function here is lost. I am vulnerable. I am scared. Why doesn’t my body work anymore? Why do I feel like this? What will happen to me? What does my future look like?

I was redeployed from my clinical role on the ward to an administration role within the NHS in order to continue to work. Lucky I could still keep a job, pay my mortgage and bills. I drive an automatic car to help me with independence as I cannot tolerate public transport anymore due to frequent bad falls. I have a blue badge but I pay for the car myself. My car is my legs, my freedom. A luxury I am very grateful to have. I walk with a stick all the time.

After multiple scans, investigations, physio, GP appointments, A+E attendances after falls and not knowing the cause of my chronic pain, my mobility loss and symptoms and chronic fatigue I received an appointment to the Muscular Skeletal  department in October 2022.

In October 2022 after a Multidisciplinary team discussion and an overview of my symptoms, scans and the whole picture I was told that my diagnoses is likely to be fibromyalgia and ME/CFS. Damage to my nervous system itself causing this chronic pain, fatigue and mobility loss.

To say I broke down would be an understatement. In fact, it wouldn’t even begin to describe how I felt, how my heart broke for my former self, how am I going to cope with this forever? I am 31 years old.

I was told to get some information and read up on the conditions and that I would be referred to rheumatology and CFS clinics for management and support. I am really going to have to cope with this forever, this is my new normal, this is my body now, and there is no quick fix that I so hoped there would be. I read a little but very reluctantly I must admit.

To my frustration many said “at least you know now”, “I know someone who has that”, “try swimming or yoga that will help you “, “How do you walk your dog still “, “Stay positive” all of which not helpful and just added to my anger, my sadness, my grief for my former self. I wanted to shout and scream at the world and still do. I know some people don’t know what to say, others are too nosy for their own good and some just damn right rude and ignorant. None are walking in my shoes for sure, none know what it takes to carry on every day and to battle with your own body, not to mention thinking about what you’ve lost, the person you are now compared to what you were and what my future looks like.

Too right I work full time still in my office role, I have to. Doesn’t mean I am not exhausted or debilitated by my pain, by my body. I am tired of explaining myself to others and yet I also have an urge to share, to educate to be brutally honest about what I feel physically and mentally every day and what I have been through to be here today.

Particular touchy subjects for me are questions around my dog walks and the time I spend with her outdoors. It is almost as if people expect you to curl up in bed and cry forever and I mean yes, I could do that, I could also sleep for a thousand hours and still feel utterly exhausted but that won’t change a thing for me, that is not living and we only get one life.

I walk my rescue dog when it hurts and until it hurts. She gives me purpose; she gets me through a hard working week and long sleepless nights and reminds me that there is still beauty in the world. With her I walk when I feel I can’t, with her I feel the rain, the wind and the sunshine on my face, we share nature, we discover together and we breathe the fresh air. I couldn’t survive without this important aspect of my life, I need it, It is where I find my peace, where I can feel like myself again just for an hour or two, even sitting on a bench for hours staring out at the fields, the skies with her, I will until the end and no one will stop me not even myself.

I know I am not the only one that goes through what I do daily and have lost what I have in them; it really is the hardest fight and a daily battle. I can only have hope for the support; treatment and lifestyle adjustments I need to live better and feel more comfortable in my new skin with the pain and disabilities I have.

I am grateful every day to have an incredible support system, I know I am lucky even when I moan, cry, shout, complain and say I cannot go on, not to mention the huge burden I feel. I am not worthy of them I know that. They now have a very broken tired and different version of me and what I can do now and what I am like to live with especially with my partner of 10 years, of course she loves me no less and I would do the same for them all, doesn’t mean it does kill me inside.

Charities like FMA UK and support groups on social media are amazing outlets to have, where people can truly relate and share experience and these aren’t just passing words or a disappointing medical visit or comment from someone in passing. It helps mentally to write, to rant and to share my deepest darkest, truly and honestly.

My partner, my rescue dog and my family are my saviours, without them I know I wouldn’t have survived this. To have the support system I do, I am eternally grateful, I am so thankful. I am so incredibly lucky.

Thank you FMA UK for giving me this space to share my experience.

April Yorke for FMA UK Instagram @bodyspace