Living with Fibromyalgia

Lady suffering with depression and fibromyalgia

I’ve just recovered from my last flare up and finally feel back to normal, whatever that means. Perhaps normal is being able to hold this pen without a struggle, producing handwriting that is neat and not childlike.

The strange part is, I can barely remember what it felt like during the last couple of weeks. We move on so quickly, in this life, nothing is sacred. We take tablets to allow our bodies to shift whatever infection we currently fight, and yet we do not often stop to question why, why we became so unwell in the first place, what was going on in our minds or in our lives. I must force myself to remember otherwise people will never know how it feels.

For me it starts with soreness. One random part of the body becomes tender, often on the same side, the first indication of what’s to come. Sometimes it passes, but other times is stays and escalates. As it progresses, for me it moves around the body with increasing levels of pain, discomfort and fatigue until it takes over. And when this happens everything becomes difficult. Small daily tasks become big challenges, being able to concentrate on anything…

When we become sick our bodies are communicating, telling us to rest. The natural healing process kicks in: we take time off work, sleep more, temporarily switch off from our responsibilities, but how do you cope when you cannot even do this? When even watching mindless television becomes arduous. Trapped inside an aching body, your biggest task is to find a comfortable position, but of course there are none.

I recently looked back on something I wrote down last year when I was attempting to document the effects of this condition. It’s very powerful to read but also to look at given that my handwriting is completely different, very scruffy. I remember how hard it was to physically write down my thoughts:

Thursday 6th September 2016

“I find myself needing to write, once again to express how I’m currently feeling. In comparison to last week I am much better, although I am in so much discomfort I want to cry, or fall asleep quickly so that I can wake up feeling normal again.

“It really hurts walking up the stairs to bed, as if I’ve had a hard day at the gym, when in reality the only exercise I’m able to do is walk around the park, not even a full circuit.”

Date unknown

“I want to tell you how I’m feeling but I barely have the strength to write. I ask my partner to pass me my notebook, it takes a little while but eventually I manage to write, like a child messy and quick, my letters don’t join. I need to get the words out while my arm lets me.

I lay on the sofa with tears streaming down my face, it’s too much effort to wipe them away. I flop from one position to another, desperately trying to find comfort, but I do not.

My leg is sore, it hurts when it touches the sofa or someone presses on it. My chest is tight again, so my breaths are big and deep, I never seem to take in enough air.

I was so hot that I had to change into shorts, how can I now be freezing cold, on a hot summer’s evening? My arms ache, other parts are becoming sore too. I move onto my other side.

I need water but I dread trying to stand, I’m not sure my feet will hold me up but I must try, no one likes to be a burden. I’ll bring the water closer.

All I want to do is relax and yet I can’t, why is that? No ability to focus on anything productive and yet no ability to simply relax. The tiredness is overwhelming but if I go to bed at 8pm will it disturb my sleep?

I’ve thrown the blanket off me now as I fidget around the sofa. I’m boiling hot again. I wish someone would carry me to bed.”


I can picture myself writing those pieces, I know exactly where I was at each time. And yet the description feels so alien, like a character in a story, surely that wasn’t me? Today is a good day, I’ve managed everything so far without a rest. Fibromyalgia, the invisible illness.

I wish people could witness the other side of the condition, they only see you at your best. A friend recently said to me that I appear to be sick a lot, I tried to explain that it’s part of the Fibromyalgia, that’s why you don’t always get to see me. I don’t want to be known as someone who is constantly ill, I rarely suffer from colds or viruses. I just want people to understand, there are good days and bad days.

In fact something dawned on me last weekend when I was away in Norfolk walking through a beautiful country park. I realised how it felt to be normal, whatever that means. That day, for me normality meant going out for a long walk without the fear of not having enough energy, secretly wanting to head back to the car whilst everyone else enjoys themselves. For the first time I was able to enjoy the walk fully, to appreciate the beauty all around. I took a photograph to capture the moment, to remind me in the future. I wish I could bottle up that feeling and carry it with me through the bad days.

I’m not angry about this condition, even though there is little information or cure, I am grateful for all that it has taught me. It makes me proud of my achievements, it shows me when I need to slow down and rest, it has even forced me to read books again, when I have the time.

Most of all, from writing this I want to reach out to those who are also suffering and to raise awareness of the mysterious condition that is Fibromyalgia. I hope this gives an insight into that friend you barely see, the one who is secretly trying to stay positive, just to get through each day. I want to demonstrate to sufferers that it can get better, despite the difficult days.

I recently set up a crowdfunding page to raise funds and reduce suffering through self-development and Sound Therapy. I aim to provide a number of free healing sessions via sound baths in different locations and workshops based on anxiety and depression, offering tools and support to cope with poor physical and mental health. This process has led me to research my condition further, it is very comforting to know there many others  having a similar experience.

So what is Fibromyalgia?

It is a largely misunderstood and frequently unknown medical condition characterised by chronic pain and tenderness. Secondary symptoms include severe fatigue, problems with memory known as ‘fibro-fog’ and broken sleep, which often result in mental health issues (such as anxiety and depression) and an inability to complete normal daily tasks. Additional symptoms can include numbness, tingling, sensitivity to light, noise and temperature and restless leg syndrome. Each case is very unique and varies from person to person.

How can I help?

There is currently an online petition to increase visibility of Fibromyalgia within Parliament with the intention of it becoming a fully recognised disability. If you feel inspired to help please start by visiting Change.org and signing the petition.

Please also take a moment to watch the video on my crowdfunding campaign and share as widely as possible. All donations are very welcome no matter how small and will be put to good use to help others in 2018.

Looking for support? Fibromyalgia Awareness UK support sufferers and raise awareness of the condition through groups and events.

Together we can reduce the suffering ❤ 

From Coco Pops to Cacao – turning veggie

Avocado in a bowl

I used to eat coco pops for breakfast. That still amazes me.

I’ve made a lot of changes to my diet in the last three years, which has inspired a whole new outlook on what I put into my body. It’s interesting to look at the old you, although sometimes, I barely recognise myself.

It all started with a trip to Cape Town in December 2013. I set off with the notion that it would be a life-changing experience; I hadn’t travelled to somewhere so exotic since I was a child. I didn’t know how or why but I’d heard that it was a spiritual place. I think I envisioned myself revelling in the stunning scenery, bonding with nature, enjoying safari trips and making peace with life itself. Unfortunately this was not how my time was due to be spent.

We didn’t go on safari, and I can’t say I remember much in the way of pure relaxation, but I do remember it being a beautiful place. There’s something about Cape Town that made me feel instantly at home, namely the creative expression at local markets where I found myself building a collection of unusual instruments. Of course the universe always had a greater plan for these.

We made the most of the sunshine and swimming pool on arrival, naturally my hula-hoop also made an appearance. But it wasn’t long until I started to feel exhausted, and that was just from going out to breakfast. We would then head back to the house to get changed and venture out again for tea and coffee mid morning, which completely wore me out. It was at this point that I realised, I simply couldn’t cope

I distinctly remember crawling up the stairs and falling onto the bed crying. I had absolutely no energy and it was really getting to me. We had arrived right at the peak of summer so the heat was having a big impact on me, but I used to live in Spain so this shouldn’t have been such a problem.

As my energy levels continued to decrease, and the trip became harder and harder, we decided to seek some help. We searched for the local health shop where I was introduced to Bio-Energetic Stress Testing (BEST). BEST measures electrical conductivity through pressure on acupuncture points on the hands and feet. It tests for vitamin and mineral deficiencies, hormonal imbalances, food and environmental sensitivities. It also tests all the major organs and glands for an overall picture of health, just what I needed at the time.

I yawned my way through the two and a half hour session and was given some startling results. Apparently I had a parasite attacking my liver, I was allergic to sugar (internally) and still suffering the effects of candida from food poisoning. Less shockingly I was intolerant to wheat, gluten and a few other things. I was put on a strict anti- candida diet, ordered to eliminate sugar from my diet and prescribed a course of herbal tablets, all a little overwhelming for someone who was already on the verge of tears.

I panicked. How on earth was I going to give up sugar? I knew it was something I needed to work on, due to becoming rapidly addicted. I had been fighting tiredness with chocolate bars for some time. It helped to overcome the energy dips during office hours, at least temporarily. It was a lot to take in but, nevertheless, it was the first step.

It’s not the kind of news you want to hear whilst on holiday. Particularly when you have to watch everyone else drinking milkshakes and hot chocolates (my favourite holiday treats) the following day. Somehow I stopped ordering treats, and drank mostly alcohol free drinks.

I decided to seek further advice from a couple that ran a local spa. Both vegan and experienced practitioners, I thought perhaps they could shed some light on the diagnosis. During a very long consultation they opened my eyes to a whole new way of being. They heavily encouraged switching to a vegan diet, consuming only organic food and drink, revealed surprising truths about following a traditional balanced diet, and suggested further reading that backed up their belief system.

Once again I left feeling rather overwhelmed, possibly even brainwashed by ‘vegans’, but something inside me clicked and there was a realisation that what they were saying made sense. I decided the best way forward was to take everything on board and decipher the parts that resonated with me. I continued to eat meat during the trip – as stated on the anti candida diet – but did my best to dramatically reduce the sugar intake, and introduce new healthier food options. Flashback to my first shredded carrot and avocado on rice crackers for breakfast, when I thought my life was officially over. And so the journey began.

It wasn’t until I returned to the UK that I made the drastic switch. I was so frustrated with tiredness and depression I just had to get better. I did some more research and started seeking inspiration from Instagram. I completely identified with ‘Deliciously Ella’s story’, of course it made sense to heal yourself through diet, it’s no secret that what you put in is what you get out. Your body is a temple, so I’ve heard.

I can’t remember exactly how it happened, perhaps it was a new year’s resolution, but all at once I gave up wheat, gluten, meat, dairy and sugar. And I actually did it. Once you stop eating sugar you stop craving it, eventually. I can’t quite say the same for the smell of bacon. I did miss meat, but without it you become so adventurous. I started to really enjoy cooking, the creativity and spontaneity of it. I may have also become a little obsessed with taking photos of finished plates – some things will never change. My family didn’t get it, but that’s ok because we all evolve at a different rate.

I succeeded for six months without any slip-ups, and then through no fault of my own, there was an incident with half a chicken kebab and some Haribos. Since that day I’ve not quite managed to be as strict with my diet. Wheat and dairy have made appearances, alongside the occasional stress-induced chocolate splurge. But I have mostly stuck to the routine.

It can be hard to find free-from options when eating out in restaurants and attending parties but you can only do your best. I’ve found that from strictly cutting out so many things, my body is more able to deal with the smaller amounts of ‘bad foods’ now. When you overload on these your body will always suffer, but it can handle the odd supermarket sandwich or sprinkle of cheese on pasta. The key in getting started is to read labels; anything with numerous ingredients should be avoided. Just keep it simple.

Add plenty of super foods and smoothies to your diet. Green juice works wonders for mental and physical energy, but be careful not to replace food with juice. I often have a juice or smoothie in the morning before going out for a walk, then eat breakfast when I get back home.

We must remember to be patient with ourselves and stop comparing to our role models on social media. I’m sure they have slip-ups too, but we only present the best version of ourselves to the external world. Balance the good with the bad. Tomorrow is always a new day.

As I start the New Year phasing out festive foods, I remain committed to this new way of being. As someone who has identified to being somewhere between vegetarian and vegan for three years – I still eat eggs, tuna and honey for now to cope with the Fibromyalgia – I believe it was the best decision I’ve ever made, I only wish I’d done it sooner. Overall my body feels healthier and less bloated, and my mind feels so much more motivated without the constant influence of junk food.

It can be daunting at the start of the journey when researching diets and others’ beliefs, but remember to listen to your body and do what feels right for you. Some people like to give up everything at once, others prefer cutting out one thing at a time. Setting smaller targets may be more sustainable in the long run.

You wouldn’t believe that I used to be infatuated, borderline obsessed with chicken (ask any of my old school friends). But we all make changes in our own time. The first step is recognising that something needs to change, from here on the world is your oyster.

I now understand the reasons behind adopting a meat-free diet. Vegans are not new age hippies trying to brainwash you, nor are they just about saving the animals, eating a plant-based diet is essential for looking after your own health, eliminating illness and feeling the optimum of yourself.  But even more so, it’s important to conquer the ongoing battle with sugar cravings, that little devil on your shoulder forcing you to eat chocolate to get through each day.

So if you’re currently wondering why you signed up to Veganuary, my advice to you is stick at it for a bit longer. With so many meat-free substitutes around, there really is nothing left to miss. And with over half a million people now following a vegan diet in Britain, times really are changing. What have you got to lose?