ME & Me will share a monthly life story of someone living with ME in Yorkshire.
Lucy Rhodes, 26, from Bradford, was diagnosed with ME in 2019. Two years after her diagnosis, a lot of tears and a life-threatening complication, she’s now ready to share her story.
ME & Me Series: Lucy’s story
In 2019 I started to feel ill. Not your usual cold-and-flu run of the mill ‘I need a few days rest’ ill. I’m talking bed bound, can’t walk, light hurts my head, my body feels like it’s giving up on me, scary ‘I don’t want to miss my whole life’ ill.
It took me about three months of blood tests and GP visits before I even heard the phrase ‘I think this is ME/CFS.’ Little did I know I was in for a hell of a ride both emotionally and physically.
In the beginning…
My main symptoms were; numbing exhaustion, pain in my limbs, headaches, over-sleeping or insomnia depending on what I had done, a crappy immune system meaning I got everything going and a malaise so strong that I could feel it in my bones after something as minimal as walking down the stairs or brushing my teeth.
I was one of the few who didn’t suffer the mental exhaustion that can be caused by ME and for that I am so thankful, as it allowed me to carry on watching TV and doing jigsaws, which is all that got me through the early days. Luckily, my GP was understanding and advocated for me, and she began to fight for a referral to a specialist ME clinic in at Seacroft Hospital in Leeds. My local CCG refused this for ‘budget reasons’ and sent me on multiple courses related to stress and anxiety.
It was at about this point that I immersed myself in the online ME community. I had so many fears relating to the diagnosis;
Would I ever be able to live my life normally again? Would I ever be able to work full time again? What about when I want children, is that even possible for me now?
I found people who were suffering like me, using up all of their energy on a medical battle they shouldn’t have to be fighting and their limited remaining mental space worrying about their futures. Spoons and spoons of precious little time that we had out of bed and cognitively functioning were used attending endless blood tests, appointments, courses not related to our condition and on the phone to our GP.
Then I hit what I would call my rock bottom, I developed a life-threatening blood clot on my lungs due to my levels of inactivity and being bed-bound for much of my days. As a result I spent 6 month on blood thinners and luckily the clot was small enough that limited treatment was needed.
After hearing the words ‘this can be life threatening’ I was determined to fight. I was not going to let this condition defeat me. Bradford opened up their own ME Clinic and so the fight against the CCG came to an end as this clinic was within my area. I began by attending an eight week clinical group focused on the management of symptoms and coping with ME/CFS and they gave me the support I needed to start making manageable changes. I also met four other women, all of different ages who were also suffering with ME/CFS and I can honestly say this was the most useful part of that eight weeks.
I didn’t feel like I was adrift in a huge, very tiring, ocean on my own anymore. I had a few other people floating (or rather paddling for our lives) along with me.
After the course, I continued to receive support from the ME clinic including help from a dietician, physiotherapist and occupational health professionals. At this point, I was back home with my parents and out of work.
My mental health was suffering just as much as my physical health. What was most important to me was my independence and I had lost it completely, with no idea if I would ever get it back. I was still determined.
Managing ME and Me
I’m currently writing this from my kitchen, in my own house, after work at my full-time job. I have friends that I see (COVID safely of course) and a moderately active lifestyle. I still have ME/CFS, and I could be days away from another flare up for all I know. But I have learnt (with a lot of determination and trial and error) how to manage my symptoms to avoid serious flare-ups such as the one I experienced in 2019-20.
I rest, more than the average person. I found a job that is 50/50 desk work and being up and about the college campus and that allows me time to sit and recuperate. I plan out my time and limit socialising to days when I know I can provide myself with the rest I will need afterwards.
I still have to think like 2019 Lucy, even though I can wake up some days feeling relatively normal. It’s still emotionally and mentally exhausting but it’s a small price to pay for what I have clawed back from ME/CFS.
I know that I’m lucky. I had mild to moderate ME/CFS even on my worst day. Those who have it severely are relying on me and others like me to advocate for them. We need to change the way the condition is perceived. A huge step forward came with the NHS recognising it as a neurological condition but there is so much more we need. We need access to professionals and more clinics like the one I am a patient at. We need to not be told we’re stressed or crazy. We need help financially if we can’t work, without having to fight for months on end.
We need advocates and people to fight for us when we are too tired to fight for ourselves. We need bald men to not have more funding than us. There’s so much work to be done, and as long as I am able I intend to be doing it.
If you’d like to share your life living with ME in the ME & Me Series please do get in touch below.