This is the first post in a series exploring my journey living with Chronic Fatigue Syndrome (CFS)/ME, where I set the scene and explain what CFS/ME is, what it is like for me, how the illness first developed and how it shows up in my life now. Part two will look at all the things I am doing to recover from it, how I manage it day to day, and the improvements I have seen since implementing this advice. Part three will explore my daily healing routine in more detail.
It has taken me a long time to get to the point of being able to write about this. This is a very personal post and it feels scary and vulnerable to share. But I am doing so in the hope that it may help others who are going through the same thing, and also help to spread awareness and understanding of what this debilitating invisible illness is and how it affects us. I hope this gives you some insight into the illness that continues to shape my life - despite it’s many challenges, it has taught me so much and for that I am very thankful.
What is Chronic Fatigue Syndrome (CFS)?
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a serious, chronic and complex illness where sufferers experience extreme and debilitating fatigue, muscle aches, and cognitive dysfunction (poor memory and inability to concentrate or think clearly - often referred as brain fog). Other symptoms such as joint pain, problems with sleep, headaches, nausea, dizziness, heart palpitations and sensitivity to noise and light are also commonplace. Not everyone will experience all of these symptoms and the severity can vary from person to person. The symptoms also fluctuate from day to day, making it very unpredictable. The illness can go on for many years and some people never fully recover. In severe cases, people can be bed bound for long periods of time and are unable to care for themselves.
The illness has a major impact on people’s lives and many (I would say most) are unable to attend school or go to work. Even leaving the house becomes a huge challenge. Socialising becomes hard to impossible, family life becomes restricted and relationships can get strained.
What Chronic Fatigue Syndrome (CFS) is like for me
For my part, I can best describe it as feeling like you have the flu, permanently, without the head cold. On bad days I feel exhausted all the time and struggle to keep my eyes open, my muscles ache deeply all over, walking feels like a tremendous effort, my brain is foggy and it is a struggle to make the simplest of decisions or concentrate on anything or hold a conversation. I’m unable to tolerate any noise or bright lights or any company and need to sit or lie quietly with my eyes shut.
These symptoms will ebb and flow over time and their severity varies significantly from day to day - there are many different “in-between” states.
A reasonable day for me is when the tiredness and the aches are there, but more in the background. I am able to go for a short walk and do yoga and sit at my computer and concentrate for an hour or so before needing to rest. I can engage in conversations and prepare meals and wash-up.
A good day is where the tiredness and aches are even more in the background and my brain is feeling alert and I’m able to concentrate for longer periods of time. I can work at my computer for 3 hours (with breaks), or go for a long walk, or meet other people (but not all of them).
Any exertion - mental or physical - requires rest time for my body to recover. Sometimes I can push it when I’m feeling stronger and say go for a long walk two days on the run, or work in the garden one day and then have several hours working at my computer the next. But it always catches up with me, and usually means that I need several days of complete rest to recover. This is the bit that most people don’t see.
This is what sets CFS apart from “normal” fatigue. Before I got ill, I used to feel tired after doing too much, but I could still keep going and go to work every day, and a good night’s sleep or two would usually sort me out. Now, this is impossible. My units of energy available for each day are considerably less than they used to be, and when they run out, I cannot function and need to rest for long periods of time to recharge. It’s a very careful balancing act of how to spend my limited energy, and activities need to be chosen carefully.
One of the most difficult things for me is socialising - I find this drains my energy more quickly than anything else. On a day that I socialise, I can’t do anything else. My menstrual cycle also has a major impact on my CFS and my fatigue and aches and brain fog are heightened for several days a month, when everything becomes a struggle.
I think the unpredictable nature of CFS is one of the hardest things to really understand and come to terms with - you just have to take one day at a time, which makes planning things very difficult. You learn to be very adaptable, to pick yourself up time and time again, to accept the bad days and make the most of the good days. You learn to live in the present moment - there is no other way.
I’m now in my mid-forties and my eighth year of living with CFS and have been unable to work for the last 5 and a half years. We have been living on a single income for all this time, with no financial help or support from outside. Finances are something rarely spoken about, but I wanted to mention it as it is a major struggle for us and many others. This year, I need to start earning some income, whatever my state of health, and this scares me.
I also just want to stress that this is my experience of CFS - it will be different to other people’s - there are so many different levels of severity and so many variants, even for one person. For many people with CFS/ME, even managing to have a shower is a tremendous effort and achievement.
How CFS first appeared in my life
I first became aware that I had CFS at the beginning of 2012, although I believe it started to develop several years before this. I had a really bad case of the flu at the end of 2011 and didn’t recover. After the cold and shivers had faded, I just couldn’t shift a deep fog of fatigue and couldn’t keep my eyes open and I felt achey all over. I went to my GP who took some blood tests which all came back “normal” and eventually diagnosed me with Post Viral Fatigue Syndrome. I think I had about a month off work, which was unheard of for me.
At the time, I was working as the Systems and Information Manager for the Research Services Department in the University of Oxford - it was a big job with a lot of responsibility, managing a team, several projects, and ongoing services and systems. I returned to work when I began to feel more normal again, but there was always an underlying feeling of achiness and tiredness.
Over the coming months, I had several relapses of feeling exhausted, achey and very emotional, and had quite a bit of time off work. On returning to work after one lengthy episode, I went to see a University counsellor, who helped me reprioritise and figure out what changes I needed to make to my job and the way I worked, at least in the short term. This included delegating more, postponing things and shifting deadlines until I could get back on my feet.
My recollection of the months following this is now rather hazy, but over time I reduced my hours and worked 4.5 days a week, with the last half day working from home. This helped a bit, but not enough. I would drag myself through the day, and collapse in a heap on the sofa at the end of the day while my husband cooked dinner. I remember getting more and more anxious about everything and avoided leading meetings and delivering training and presentations as I used to feel uncontrollably nauseous beforehand. I also started to step back from more and more responsibilities as things became more overwhelming and I was struggling to cope mentally and physically. Eventually, I realised something needed to change - I couldn’t carry on like this.
2013: The big decision
I’d been having some acupuncture since 2011 to try and help get my system back into balance. I’d been experiencing so many colds and flus with frequent chest infections which led to lots of antibiotics and oral steroids to control my asthma, which kept getting out of hand. I knew something was off, but I didn’t know what.
After one particular acupuncture session, I remember having a light bulb moment, and became certain that I had to make a big change if I wanted to get better. I could see there was no way I was going to be able to make a recovery whilst I had such a big demanding job that took all of my time and energy. In this moment, I decided I needed to leave my job and take some time to rest and recuperate (I naively thought that 6 months would be all it would take for me to bounce back to health). I did some quick finance checks to see how we could manage and what we would need to change. I’d never been more certain of anything in my life. After a long discussion with my husband, I handed in my notice and left 3 months later - this was October 2013.
In the months and years that followed, I focused on pacing myself, resting and doing simple things that bought me joy. I continued with my beloved yoga practice, I learnt to sew and made lots of things with vintage fabric, and I photographed and blogged regularly. I withdrew from socialising as I found this too tiring and felt like I had less and less in common with my friends as I just couldn’t do any of the things they were doing. I continued to have acupuncture every fortnight as I found this calming and soothing for my system, and looked forward to my hourly slot as time to focus on my wellbeing and reflect on my health.
I also remember anxiety being a real problem for me. In particular, I would feel really nauseous before an event, or meeting someone, and often be sick. Sometimes I would shake uncontrollably and have heart palpitations and feel dizzy and have to lie down. I now know that this was anxiety, but I just couldn’t understand it at the time.
I think this was the first time I sought outside help. I’d been to see my GP a couple of times before this, since my first diagnosis with Post Viral Fatigue Syndrome, and had repeated blood tests, which always came back “normal”. My GP was very reluctant to diagnose me with CFS - it is only usually done after eliminating lots of other possible illnesses - and you need to be experiencing the symptoms consistently over an extended period of time (at least 6 months I think). I was offered no help or information and he couldn’t get me out of his office fast enough - he clearly felt very uncomfortable talking about an illness that is so poorly understood by the medical profession, and it left me feeling like it wasn’t a “real” illness and I was some kind of fraud, and was very much on my own. I was told there was no cure and that most people seemed to get better eventually, but not everyone did. It was just a case of managing my symptoms and pacing myself and doing the best I could with the limited energy I had.
So I didn’t go looking for any cures or treatments - I believed what my doctor said. Until the point that my anxiety got out of hand that is, and I went to see a psychotherapist who practised Cognitive Behavioural Therapy to see if this could help. It didn’t really - but I did at least learn that what I was experiencing was anxiety. I think the most useful thing that came out of these sessions was right at the end when my therapist just urged me to accept what was happening to me regarding the nausea and anxiety - and not to resist it. To know that it sometimes came, but it would always pass. This bought me the most relief - up until this point I had been fighting it so hard, desperately resisting the nausea, willing it away, thinking I was failing by feeling sick. By simply accepting that it would arise under certain circumstances and that that was OK gave me immense relief.
I now believe that this anxiety was part and parcel of my CFS and that my body was just feeling under so much stress and was so low in resources, it was a cry for help. I also now know that anxiety has a very physical cause and is absolutely in no way anything shameful or a failing. The benefit of hindsight!
How it all began
To take a step back for a moment, I think it’s worth mentioning a series of triggers that led me to this point in time. Now I look back with more understanding, awareness and knowledge, I can see how so many different things all contributed to CFS erupting in my life in 2012 - my body was at an all time low and simply didn’t have the resources to carry on.
I developed asthma as a young child, followed soon after by a bout of Scarlet Fever. I now believe that this was the point the virus that is responsible for CFS first became active in my system (I will explain more about this virus in Part 2).
I never grew out of my childhood asthma and from about the year 2000 onwards, I had frequent chest infections and bouts of the flu, often treated with antibiotics and sometimes oral steroids (I was taking regular doses of inhaled corticosteroids to control my asthma, but it still regularly flared up). My immune system was compromised from the steroids (which are immune suppressants) and antibiotics and I was an easy target for viruses, especially when I was often stressed at work, always pushing myself to the limits of what I could do.
My Mum was diagnosed with a rare form of cancer when I was 13. It was controlled through regular operations for a long period of time, but in 2005 things deteriorated rapidly, requiring multiple operations and a period in intensive care. At the same time as dealing with Mum’s illness and frequent trips back and forth to Jersey to be with her (I was living in Oxford at the time), I was also in a new relationship and moved in with my partner (now husband), and got promoted to a managerial position at work with some major projects to manage. The following year we bought our first house and my Dad had a stroke (thankfully he recovered). The year after, my Mum lost her battle with cancer after a long bout of suffering. Although we knew it was coming, nothing can really prepare you for death and the heartache and grief that follows. We got engaged at the end of that year and married the year after. Seeing it all written down now, it looks crazy. I’m not sure how I coped, especially with increasing responsibility going on at work at the same time and a new boss.
I think it’s fairly obvious why my health went into decline over the years that followed, with frequent episodes of what I thought was the flu (but now can see was the early stages of CFS) that dragged on and on and the feeling that I was always fighting some kind of infection - feeling tired, achey, and completely run down with a sore throat.
2014: Moving home and relocating
In spring of 2014 we decided it was an ideal time to sell our house in Oxford and move to live by the sea. This was something we had dreamed about for many, many years, but the logistics of trying to sell and buy at the same time as finding new jobs for both of us, just felt like an insurmountable problem. But at that time, I was of course not working and my husband was working remotely for a company in Cambridge and could in theory live anywhere in the UK. It felt like a unique opportunity to make the move.
So despite my low energy levels, we somehow managed to redecorate our house, find a buyer for it and then go on a crazy tour of the UK trying to decide where to move to. We eventually settled on Seaford, in commuting distance from Brighton, and not too far from London. We fell in love with the stunning coastline in-between Seaford and Eastbourne and the house prices seemed to be affordable. We had to pull out of the first house we put an offer on once we saw the survey results, but managed to find another one that was even better in October, and completed the sale and moved in December 2014. Whilst the stress of the house sale and move and all the DIY was not very sensible for someone trying to manage CFS, I am SO glad we made the move when we did. Where we live now is so much quieter and more peaceful and I just LOVE living so close to the sea - something I find very healing indeed.
After a period of settling in to our new home and overseeing the fixing of a lot of urgent issues, I could finally pause for breath. I very reluctantly put my CV together in the spring of 2015, thinking that I had to start looking for work, as it had been a year and a half since I left my old job. But the person I was writing about on my CV felt like a totally different person and my old job felt like a lifetime ago. My body still felt exhausted and achey and my brain was still foggy. I began to realise that healing was a much longer term thing, and that I was in no way shape or form ready to start work again. As I started to relax a bit more, I think all the stress of the move and the DIY started to catch-up with me and my CFS took a dip.
2015-2017: A slow decline
During the years 2015 - 2017 my symptoms continued to fluctuate, but I started to have more frequent, prolonged crashes as time went on, requiring complete rest. I managed as best I could, focussing on pacing myself and making the most of the life I had. I decided that I had had enough of waiting to get better before starting to work again, and motivated by a quote by Roosevelt “Do what you can, with what you have, where you are”, I decided to re-open my Etsy shop and start to design and sell inspirational quote prints. I taught myself brush lettering and how to use Adobe Illustrator and thoroughly enjoyed the process. But it was slow. And it was a struggle to concentrate, and I often pushed myself too hard and neglected my self-care and then had to take long periods of time off to rest. I continued to blog when I could, and together with my husband, we completed a lot of DIY during this period, which meant everything else had to go on hold, as my energy was so limited.
In 2016 I went to see a GP in Seaford who took my CFS seriously and I had my thyroid stimulating hormone (TSH) levels checked out for the first time. Not surprisingly, my thyroid function was low. I was put on some low dose medication to raise my TSH levels (Levothyroxine), but I didn’t get on well with it and experienced a racing heart beat, so stopped taking it pretty quickly.
In 2017, I experienced extended rough patches and crashes more frequently (where I was unable to do anything other than lie on the sofa and rest), and after one particularly low patch, I finally started to search for answers and for things I could do to help myself recover.
I convinced myself that a lot of my problems were caused by Candida, and put myself on a strict anti-Candida diet with no sugar and no fruit and eating what I thought was a healthy diet with plenty of vegetables. I also experimented with drinking Kombucha and making fermented vegetables. But it didn’t help.
At this point I also came across the work of Faith Canter and her book Living a Life Less Toxic*. I started to follow all of her advice and tips for recovering from CFS. And I also searched for people to connect with on Instagram who were also recovering from CFS. This really opened things up for me and made me aware that there was SO much I could be doing to help heal myself from CFS.
*This is an Amazon.co.uk affiliate link, so if you make a purchase using this link I will receive a small payment.
2018 and beyond: the resurgence of hope
As I started to build my network of fellow CFS and chronic illness warriors, I started to see some books by Medical Medium pop up time and time again, and I remembered that they had also been recommended by Faith Canter. Intrigued and frustrated that my health seemed to be getting worse rather than better, I ordered his Thyroid Healing* book in March 2018. I devoured it - finally I felt as though I had some answers and explanations for what I was experiencing, and crucially, advice for how I could heal. I was excited and filled with hope and the next phase of my healing journey began.…
I decided that I owed it to myself to completely dedicate myself to my health and healing and I stepped back from doing anything other than the essentials for the rest of 2018. I devoted my time to reading as much as I could to understand what was causing my symptoms and what I could do about it. I read all the Medical Medium books, several times, and made notes of the key bits so I could refer back frequently (very necessary with brain fog!). I started learning about the adrenal glands, the thyroid, the liver, the lymphatic system, digestion and elimination and how these are all connected. I learnt about detoxification and healing foods and herbs. I drastically changed my diet. I enrolled on several “cleanses” to get advice and support on how to apply the information I was learning to my life and help with answering my many questions.
You can read about what I’ve learnt, what I’ve been doing to recover from CFS, and how things have improved for me in my next post: Chronic Fatigue Syndrome (CFS)/ME - What I’m doing to recover - Part 2 of 3. This post is already too long, so I thought it best to break the information up so I don’t overload you all. I hope this was helpful - and I’ll see you in Part 2!
*This is an Amazon.co.uk affiliate link, so if you make a purchase using this link I may receive a small payment