Over the last two years I have had countless messages and conversations with other young people who have Chronic Fatigue Syndrome/M.E. and it has become very clear I’m nowhere near alone in this!
So often when we talk openly about things like illnesses, fears, downfalls.. all the not so pretty things.. we realise there are a whole tribe of people going through the same kinda thing and just want to talk to someone else who knows how they feeling. For this reason, let’s talk about falling asleep mid-convo, not being able to feed myself and being in a wheelchair. Yep, these have all happened to me.
M.E. is a weird illness that doesn’t have an exact diagnosis and at the moment, has no cure. There are two lists of symptoms and if you have one or more from each list then it’s likely you have it. Not very specific huh?! Here are the lists:
a) Fatigue with all of the following features:
- new or had a specific onset (that is, it is not lifelong),
- persistent and/or recurrent,
- unexplained by other conditions,
- has resulted in a substantial reduction in activity level,
- characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days).
b) one or more of the following symptoms:
- difficulty with sleeping, such as insomnia, hypersomnia,
- unrefreshing sleep, a disturbed sleep–wake cycle,
- muscle and/or joint pain that is multi-site and without evidence of inflammation,
- painful lymph nodes without pathological enlargement sore throat,
- cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing,
- physical or mental exertion makes symptoms worse,
- general malaise or ‘flu-like’ symptoms,
- dizziness and/or nausea,
- palpitations in the absence of identified cardiac pathology.
How it started
I first started noticing my body wasn’t working properly nearly 3 years ago. I was massively into my running and working out and I was transitioning from meat eater to veggie at that time. This got the blame for it but I knew my diet was well rounded and I really didn’t believe that going back to eating red meat was going to cure it. I just knew that something was going very wrong inside my body. I also started really struggling to find the right words to go in every day sentences which made me even more sure it wasn’t to do with the diet change. I’m not a great organiser, in fact, it’s really not my thing at all and at this time I was planning my wedding which was only a few months away. The stress was high and running was my only outlet but it was becoming increasingly hard. I was starting to lose feeling in parts of my legs as well as becoming extremely tired and shakey. I was falling asleep all the time and found that anything that made me have to think in any depth completely wiped me out. Really not ideal and incredibly scary.
What the doctors said
After doing some tests the doctors decided that I might be deficient in Vitamin D, even though I wasn’t much under and almost every person in the UK is deficient as we don’t get much sun. I started a course of Vit D and as I expected, it made no difference. There were no answers and I was starting to not even be able to lift a knife and fork to my face or be able to hold my daughter which was heartbreaking. I had the conversation with my dad about having to carry me down the aisle as walking wasn’t looking likely, thankfully, for both of us, he didn’t have to! From being a very active person to not being able to stay awake or do much for myself was so frustrating and I couldn’t understand how the doctors had no other answers.. Fix me!!! The week of my hen do was coming round fast and me and my girls had planned to go to Paris for the day which I was soooo excited about and I knew had cost everyone so much money. There was no way I was not going! I went back to the doctors and told them I needed to be able to go so they gave me an even higher dose of vitamin D. I think it was 20,000 units a day. It made no difference. The day before we were meant to leave I text my friends and told them I couldn’t go. The sadness was unreal. I fell asleep again.
I woke up to my phone ringing. It was my lifelong friend, Sarah. ‘Bec, do you want to go to Paris? I’ve got an option for you, it’s not glamorous but it’s an option. Do you want to borrow my wheelchair’ Sarah has MS, although you’d probably never know. She’s one of those incredible, happy sunshine people who just gets on with life no matter what. ‘I hate having to use it but it gets me around when I can’t do it by myself, shall we go to Paris tomorrow?’ Erm.. Yes. Let’s go! So with the help of my friends we went. It chucked it down with rain, we all got drenched, we were on an open top bus, everyone took turns pushing me but you know what? It was one of the best days of my life!! We laughed so much, made it all up as we went, bumped into Olly Murs who was celebrating his 30th birthday when we were having lunch and so very nearly missed the train coming home. It was a beautiful disaster haha! Actually getting quite emotional as I write this because I feel so blessed to know some truly awesome people who have made this journey so much easier to cope with.
How I live a pretty normal life
The last doctor I saw was a young guy who wasn’t scared to say what he really thought even if it wasn’t ‘by the book’. He will never know this but he gave me my legs and life back. He told me it was very likely that I have Chronic Fatigue and there was a chance it would never go away. He also told me that if I stopped working out then life would get worse for me and later down the line I would be prescribed workouts I’d have to do to keep my body functional but I would find it extremely frustrating as they were so basic. Essentially, the less you do the less you will be able to do. ‘You should go for a run’. Erm.. Excuse me?!? Run??? How?! I barely walked in here!! But I liked his honestly and the thought of becoming incapable scared the crap out of me so I went home and told my husband I was going to run. I fell asleep putting on my running clothes. I cried for the whole run. I couldn’t feel my legs at all so I was running on the memory of what it should feel like. I tripped over. I got up. Wiped my tears and carried on until I tripped up again. I got home. I felt great. Mentally and physically. It was insane!! So I made it my plan that whenever I started feeling shakey and exhausted I would force myself out the door because I now knew how amazing I would feel after. No matter how impossible it seemed. At the same time I started researching into CFS and came across incredible stories of people living totally normal lives because of a healthy plant-based diet. I always thought veganism was for weirdos but it was starting to sound exciting! As I was already borderline veggie I gave up the last few things which was eggs, fish and chicken that I had once every two weeks or so and feta cheese. I planned to do it for a month and see how I felt. It’s now nearly 2 years later and I have never felt more incredible. I no longer completely relapse and I only get shakey and excessively tired if I do too much without getting enough rest, if I have a week of eating a bit too much naughty stuff (it’s got to be done every once in a while!) or if I don’t factor in time to exercise. I always say that of all the illnesses in this world, I actually feel pretty lucky to have one that requires me to live well.
I’m super passionate about being vegan for many reasons now but for me, it started with health. I really think cutting out processed crap, dairy, meat and refined sugar could cure so many illnesses and help people to thrive rather than just get by. Seeing and feeling the difference in my life has been so amazing and incredibly eye-opening. I was a HUGE meat lover and I remember just how good I used to think it tasted. I’m not vegan because I didn’t like it. I’m vegan because it makes so much sense and I have seen the difference it can make.
If you ever want to talk to me about anything vegan or M.E. related please feel free to message me. I want you to feel so great in your body and capable of anything!!