Yesterday I found out I have managed to secure a charity place in the London Marathon this October running for Action for M.E. – I’m so excited *read nervous* to run the London Marathon for a charity that means so much to me. The furthest distance I’ve ever run is a half marathon (and walked a lot of it) so this will be a v big challenge! I much prefer cycling to running, but this year I’ll be swapping the lycra for laces.
My JustGiving page is here.
The reason I’ve chosen to run and raise money for Action for M.E. is because in March 2017 my friend Phoebe was diagnosed with Post Viral Chronic Fatigue/Myalgic Encephalomyelitis (M.E.) after contracting a kidney infection and has lived with CF/M.E ever since. At the moment there is no explanation of why people develop M.E. and therefore there’s minimal funds towards research and currently no cure. During the pandemic lots of people have started suffering the effects of ‘long COVID’ which has chronic fatigue-like symptoms which is causing it to be spoken about more, but still not enough.
I met Phoebs at Uni, we both joined Mixed Lacrosse and looved going to training (her) and socials (me). She played for Ladies and Mixed Lacrosse which ultimately meant playing 4 or 5 times a week! On the days she wouldn’t train she’d run or do yoga, just loved moving her healthy body. We both studied Sociology together and would spend many unproductive hours in the library and she would always be the first person I’d text to go for a coffee after a lecture. One of my last and favourite memories from just before she got ill was going to a Two Door Cinema Club gig.
So, in our 2nd year at Uni Phoebs was diagnosed with M.E.. M.E. isn’t just being tired and sleeping it off, M.E. is constantly feeling tired but not being able to sleep; feeling like your body can’t move, aching everywhere, not being able to think straight and having brain fog, constant headaches, struggling to talk etc. Think of the most horrendous hangover you’ve ever had combine that with having the flu and jet lag from a long haul flight, but you can’t sleep it off, or take paracetamol to ease the pain. That along with a multitude of other symptoms, all those mentioned above and rashes, night sweats, heart palpitations, gut issues, insomnia, constant infections the list goes on. You are practically paralysed by M.E. and literally cannot leave your bed. That is how Phoebs has been for the past 4 years.
At first Phoebs tried to live with M.E. at Uni, she couldn’t go to lectures because she couldn’t muster up the energy to do the 15-minute walk from her house to campus but she could look after herself (make dinner, tidy room, shower etc). However, her M.E. got progressively worse and she had to defer her Uni place and move home. When Phoebs moved home from Uni her M.E continued to get worse, she started not being able to do simple things like washing her hair or sitting down at the dinner table for a meal.
The thing about M.E. is that it comes in waves, and over the past 4 years her energy levels have ebbed and flowed, some weeks she’ll have more energy and some weeks she’ll be in a complete crash. Last summer she was feeling the best she had since March 2017, meaning she could see her friends and go on walks. Both of these still not in the capacity that we’d think of them, to see friends she’d have to prepare and save up her energy for a week to see someone for an hour and then be completely wiped out over the following days. Walking would be for a maximum of 20 minutes and would be followed by lots of rest. At the moment she is in a complete crash, with absolutely no energy, having to have her food brought to her in bed on a tray, not being able to talk, struggling to breathe and needing to go to the doctors but simply not having the energy to do so. She can’t even pass the time reading a book or watching a Netflix series because even that requires too much energy and focus.
The thing that really hit home for me was when she told me that her therapist said she talks about Phoebe pre March 2017 as if she is grieving who she used to be. M.E. has completely taken her identity away from her, she was so sporty, sociable, great at cooking, adventurous, an unreal host etc the list goes on, but M.E has stolen everything she knows about herself and what makes her happy from her. The relationship she was in ended, her childhood dog passed away, how do you deal with these things when there is nothing to distract you?
The worst part of it for her is the not knowing. With every other illness you can go to the doctor and they will give you medication, a treatment or a plan, but with M.E. you don’t get this because doctors don’t have the answers and very few seem to really care. She’s had bloods taken for every test under the Sun and there are still question marks around WHY this is happening. She’s tried so many different types of treatments – medication, therapy, nutrition plans and holistic approaches to no avail. Each failed treatment is not only a drain on her mental well-being but also a drain financially. It’s got to the point where she is skeptical trying new treatments and solutions because she doesn’t have the mental strength to be disappointed yet again.
I know the past year has been an anomaly, but think about everything you have done in the past 4 years, the places you’ve been, the things you’ve seen, the people you have met, and the things you’ve achieved. Then imagine seeing everyone do that, living their best lives, while you’re bed bound. Imagine if the past year in lockdown had been for the past 4 years, but it’s only happening to you while everyone else is living and your 20s are passing you by.
Despite everything she’s been through over the past 4 years she has done it with soo much strength and grace and if I’m honest I have no idea how she has fought the mental battle that comes with living with M.E. She continues to remain positive, full of gratitude and is always looking out for everyone else. If I’ve ever come to her with my problems she’s hasn’t complained or told me they’re insignificant compared to everything she is going through, instead she has listened. She never ever fails to send me and all our friend birthday cards, valentines cards, Christmas cards or congratulations cards for things we’ve achieved. Over the past 4 years shes obviously faced some of the hardest and darkest times mentally, but in her spare time when she’s been feeling up to it she’s volunteered for the charity SHOUT to help people who are suffering with mental health and needing advice – what an ANGEL. Humans don’t come better than her.
People with M.E. don’t have a voice because they don’t have the energy to use it, I’m hoping this post will help Phoebe shout a little louder, raise awareness and ultimately funds for Action for M.E. so there is more money for invaluable research and to give people who suffer with M.E. the mental support they need.
Again, my JustGiving page can be found here. If you can’t donate, I’d love it if you shared this post to help raise awareness.
This is just one story of of one of many with an invisible illness, if you want to learn more about M.E. there is a great documentary on Netflix called Unrest.