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I had just completed my final year at university. I was free! Eager to embrace adulthood and all the adventures that came with it. A week later I was struck down a kidney infection and never recovered.

Five months later I was diagnosed with Chronic Fatigue Syndrome.

I went from planning to backpack around the world to struggling to walk up the stairs. I went from a life of independence to complete dependence. 

At the time I didn’t realise how long term it would be or how profoundly this illness would affect every aspect of my life. 

8 June 2007 I woke feeling horrendously ill, had a sky high temperature and was weeing blood – generally not a good sign! Straight down to the local doctor who diagnosed a kidney infection and prescribed antibiotics telling me I should feel better within a week. A week later…. still not feeling better, so I was given more antibiotics…. still not better? More antibiotics…. then even stronger antibiotics!

To be honest the antibiotics did nothing for me except give me the most horrendous, explosive diarrhoea I had ever experienced! I asked the doctor about this and he brushed it off saying it sounded like IBS. I’d never heard of IBS but felt it couldn’t be that, the diarrhoea was definitely connected to my infection. 

At the time I didn’t know antibiotics could cause diarrhoea. And no one explained to me that after taking antibiotics you should take probiotics to replenish all the good gut bacteria which had been wiped out. 

After over a month on antibiotics my gut microbiome was well and truly screwed. Ever since then I have had digestive issues and believe this is one of the key factors driving my ME/CFS.

By mid July I was feeling better, not perfect, but well on the way there or so I thought…

19 July, the day of my graduation ceremony, I woke up feeling rough but knocked back some painkillers and ploughed on through. The next day illness hit hard. The downward spiral started here. It was as though my body decided now my last commitment had been completed it could finally be ill.

Multiple visits to the GP, multiple blood tests but still they couldn’t find anything wrong. At this point I’d been in bed for several months, sometimes making it down to the sofa in the living room but I could only manage the stairs once a day. Clearly there was something wrong with me, but what? Time to see a specialist.

Luckily my dad had private medical insurance cover for me so we were able to jump the long NHS queues and see a consultant within several weeks. Due to my continuing digestive issues I’d been referred to a gastroenterologist. More tests and scans followed. Along with a discussion with a urologist due to the traces of blood still in my urine. 

After a couple of months the gastroenterologist diagnosed me with post viral fatigue. At the time I remember thinking this is much more than just fatigue but I was too tired to argue – the irony! When I enquired about how long this fatigue would last I was told six months but not to worry as he was going to refer me to his colleague who specialised in post viral fatigue – enter the psychiatrist.

At no point did anyone ever explain chronic fatigue syndrome to me. In fact I only discovered that is what I had when I saw a sicknote the doctor had written. However my private medical cover was very aware I been diagnosed with chronic fatigue syndrome. In their eyes this was not a real illness and refused to cover any of my medical costs. My dad was left with thousands of pounds of medical bills.

My psychiatrist explained that my body was confused and it was telling me I was tired when I was not. We had to retrain it. This is where graded exercise came in.

At the time I didn’t question this. I’d grown-up believing doctors had all the answers, they knew what was best with regards to my health. So I diligently began walking three times a day. At first this was out my front door, round my garden and in through my back door. Each week it was increased by 15 seconds, then 30 seconds, then 1 minute until I was walking a decent distance down the road.

Thankfully graded exercise didn’t worsen my condition but in hindsight it’s clear that it significantly delayed my recovery. I would come back from my walk utterly exhausted and do pretty much nothing until it was time to go for my next walk. The small bit of energy I had was being wasted on walking rather than being used to heal my body.

When I first began seeing a psychiatrist I was only five months into my ME/CFS journey. I was sleeping all the time but my psychiatrist told me this had to stop. Not only was I forbidden from sleeping during the day I was not even allowed to lie down during the day because that was too much like sleeping! I resorted to using multiple cushions to prop myself up in a sitting position and to support my head and neck. After going for my walk I simply didn’t have the strength to hold them upright.

I would strongly advise anyone with ME/CFS not to do graded exercise. I can say without a shadow of a doubt this was bad advice from my psychiatrist. 

After much campaigning from the ME/CFS community graded exercise has been removed from treatment guidelines in the UK and the US.

Around six or seven months after becoming ill anxiety kicked in, big time! I was scared to leave the house, sudden noises would make me freak out, my fight or flight response was on overdrive and my body was perceiving everything as a threat. 

I’d never experienced anxiety before. It was strange. I was experiencing these intense feelings yet I was also thinking this is completely irrational. I used to love being social now I was scared to go out or even speak to people on the phone. Even though I would tell myself there is no logical reason to be scared I couldn’t stop the fear or sense of overwhelm.

My psychiatrist gave me some antidepressants (Citalopram) which he said would help both my mood and anxiety. Although I didn’t think I was depressed I was crying all the time so I figured my mood could do with some improvement. 

Pretty soon after starting them my sleep improved and I cried less, I felt a bit more like my old self however my anxiety remained very high. I did continue going for my daily walks but was filled with fear every time I had to walk past someone on the street.

Two years after becoming ill my health had improved to around 60% functionality. I’d been signed off from the psychiatrist, mainly because there was nothing further he could do for me. I didn’t need medication for anxiety, depression, sleep or pain, the things people with ME/CFS are typically medicated for. What I really needed was a pill for more energy but he didn’t have one of those!

Post exertional malaise (PEM) was definitely still an issue but as long as I paced my activities I could live a semi-normal life. I could socialise a couple of times a week and do gentle exercise so I decided it was time to try returning to work.

The local charity shop was looking for someone todo the windows displays. I thought this would be a perfect way to put my degree in fashion design to use! I began volunteering there for one hour twice a week and gradually built up to doing 2 to 3 hours every day. 

It was fun work. I sorted the donated clothes, I worked on the till, I gossiped with the grannies (all the staff were at least 40 years older than me!). One of them was always a bit frosty towards me, I think she thought I was there on court ordered community service! I didn’t correct her because I thought it was funny!

After a while I wanted more. I’d always been very ambitious in terms of my career. As part of my degree I interned at Company magazine and spent a year working at the River Island press office. I loved London and working in the fashion industry but I knew my health wasn’t up to that yet.

Currently living in a small rural town there wasn’t many fashion design opportunities around so Dad suggested I start my own business. I jumped at the idea! Being my own boss would allow me to work around the limitations of my illness (however it did also have its pitfalls which I will explain later).

I set up a ethical clothing brand called Knock on the Door. The premise of the brand was that we would collaborate with graduate designers. They would design a capsule collection and I would coordinate the manufacture using ethical fabrics and local factories. This was back in 2009 when sustainable fashion wasn’t really a thing so this was a very unusual concept.

Four years after becoming ill I felt I was finally well enough to move to London. It was something I’d been wanting to do ever since finishing uni. Watching my friends move on, start their lives and grow their careers while I was stuck at home living with my dad had been really tough for me. Now I felt I was finally strong enough to be able to live independently and support myself financially.

London is not cheap so I signed up to be property guardian. This is where you housesit vacant properties, typically they are old schools, hospitals or in my case a community centre. The rent is cheap because the properties are quite basic, my friends lovingly referred to my house as “the squat“. I prefered to think of it as bohemian living!

I lived with 10 other people, we each had a classroom for our own private living area and bedroom but shared a large communal kitchen and bathroom. It worked well because I was able to socialise with other people but could also go into my own apartment/classroom when I needed quiet time by myself.

My business was going well. I had won some awards and even had a dress featured on the Vogue website however I was yet to make any significant money. I needed a part-time job to support myself.

I found one as a receptionist at a local car dealership. It was literally one of the easiest, least demanding jobs I have ever done. I thought I would manage it without a problem. I was very wrong.

Up until this point I’d been working in my own self-contained world. I could control my environment, my home office was always silent. Entering a commercial office with all the general office hubbub was significantly harder than I expected. The continual noise drained my energy.

I remember sitting at my desk, my whole body aching. I would look longingly at the floor dreaming up creative excuses to justify why I needed to lie down in the middle of the office. But I couldn’t do it. No matter how I tried to package it up the new girl lying down on the office floor is simply not acceptable. Never once did I consider telling them the truth, that I have a debilitating, chronic illness!

When I first started the job I signed up to a lot of extra shifts over the Christmas period because I thought the job was going to be super easy and I was seeing dollar signs. That was a particularly brutal Christmas where I spent most of the time in bed!

Lesson learned, I reduce my hours and as much as possible did half days rather than full days. However in order to earn the amount of money that I needed I had to do at least one full day a month. Looking back it was clear I was overdoing it but at the time I didn’t see an alternative. If I wanted to live independently in London this is what I had to do.

For one full day at work I would block out three days in my diary. 

Why I thought it was a good idea to do this on a regular basis I will never know but like I say hindsight is a wonderful thing!

Despite the exhaustion I really enjoyed my job. The people I worked with were great, there was lots of office banter. And receiving a paycheck at the end of the month gave me such a sense of achievement.

Many people with ME/CFS have type A personalities – workaholic, high achiever, perfectionist. I was no exception. Determined to grow my business and catch up on the career I had missed I began working six day weeks. To do this I had to drop other activities, the first thing to go was social life, then it was goodbye exercise. Literally all I was doing was working and resting.

People say when starting a business this is normal. I did genuinely love my work so I didn’t think there was anything wrong with what I was doing. But my life was so out of balance. 

18 months after arriving in London my health had significantly deteriorated. It was nearly Christmas so I decided a few weeks away staying with my Dad in the French Alps (he had retired there) would give me a chance to rebuild my energy. In the past if I’d ever overdone it just taking some time out and resting up would be enough to get me back on my feet.

Unfortunately when I returned to London in the New Year it was clear the break hadn’t helped the way I had hoped it would.

I struggled on for a couple more months but by this time I knew this was no normal crash.

It probably didn’t help that I was hiding my illness from everyone in my life. My work colleagues had no idea. Some of my housemates knew but they certainly didn’t know the extent to which I was struggling. 

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I was embarrassed about my health.

I was ashamed of my failures and thought people would see me as weak.

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I thought more resting may solve the problem so packed my bags and went for another months break in France passing it off as a long ski holiday of fun and partying.

I was so embarrassed about my health. I was ashamed of my failures and thought people would see me as weak. In reality hiding my struggles just made everything harder.

By now I had been really struggling for six months. My time away hadn’t helped. I’d pretty much given up working on my own business because I was so exhausted. I would drag my shell of a body to my part-time receptionist job and slap a smile on my face but inside I was feeling utterly broken.

The reality was dawning on me that this was it. I couldn’t continue like this. The final straw was when my extreme anxiety kicked in and I was scared to leave the house. I knew my London dream was over.

Losing my dream for a second time was brutal. I had come so close to regaining my life but the illness had won. 

I had fought so hard to get my life back yet here I was six years later back at square one – living with my parents, unable to support myself physically or financially. My parents are divorced so I had the choice of living with my Mum and my two troublesome teenage siblings! Or living with my Dad who had retired to the French Alps – I decided this was the better option!

Returning to live in my family home would have been a crushing blow. While moving back in with my Dad was not ideal I chose to see moving to France as a sideways step rather than a backward step.

He lived in a holiday resort so there was plenty of young people around all keen to make friends. I decided resting and socialising were going to be my focus and I would have a complete break from work. Since becoming ill seven years ago my social life had been very limited. Pre illness I loved being social and although now I did find it physically tiring it was mentally uplifting and rejuvenating. It helped “fill my cup.“

The English expats I befriended were very different to the corporate London types I was used to socialising with. They worked to live rather than living to work. This seemed like a very odd concept to me but I gradually began to relax into the way of mountain life. I can’t say I’ve ever lost my career ambition but being away from the “real world,” away from all my friends climbing the corporate ladder, made me feel less like I was missing out on life.

I developed a newfound love of nature. I went swimming in mountain lakes. I started to develop a group of friends, something I hadn’t really had since school.

My health had stabilised and was slowly starting to improve. I still saw my time in France as a temporary break, in 6-12 months time I would be well enough to return to London until….

We moved house and BOOM! Hello relapse!

At first I thought it was a temporary setback but when weeks, then months passed without any improvement I realised this was my new normal. 

I have been pretty much housebound ever since. There has been good patches where I was able to go out and socialise once or twice a month but only for 45–60 minutes. Sometimes I could manage a 5-10 minute walk. However there have also been many months when I didn’t leave the house at all.

I’ve basically been in lockdown since 2014!

A few months before moving house I had discovered the Optimum Health Clinic, a specialist ME/CFS clinic. Through them I learnt about functional medicine which was a big turning point for me.

Functional medicine is a science-based approach which looks for the root cause of your illness. It uses diet and supplements to bring the body back into balance rather than using prescription medications to suppress symptoms.

The Optimum Health Clinic were able to run tests and actually find things wrong with me! I remember crying with joy! Finally I had some answers but more importantly I had a roadmap of how to fix my problems – and I had many problems!

Unfortunately I was very sensitive to the majority of supplements I was prescribed consequently the treatment had limited success. However, I wasn’t disheartened because I had gained a huge amount of knowledge. I felt more in control of my illness because I knew the reason behind my symptoms.

By now I had realised mainstream medicine didn’t have any effective treatments to offer me so I began exploring holistic and alternative therapies.

In June 2017 my dad had a serious cycling accident and was in hospital for several months. During this time my brother came to stay with me so he could be near Dad and “help“ me.

Unfortunately my brother saw this time together as an opportunity to cure me of my ME. He told me that our parents had been allowing me to be ill and over the next few months he was going to expedite my recovery.

According to him I was thinking myself ill. The reason I hadn’t recovered was because I did not want to get better. I had never heard anything so insulting! At this point I had had ME/CFS for 10 years and assumed my family understood my illness. In the case of my brother, I couldn’t have been more wrong.

He decided I needed a “tough love” approach to motivate me and make me recover. This involved repeatedly and forcefully reminding me of all the things people with ME/CFS struggle with. He emphasised how much of a burden I was on our family. He highlighted all the things I was missing out on in life. He even tried to convince me that my friends didn’t want to help me or support me anymore.

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You are thinking yourself ill.

The reason you haven’t recovered is because you don’t want to get better.

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I tried to explain to him that ME/CFS has a recovery rate of 5%. So while I would love to fully recover the odds are stacked against me. He needed to accept that I could have this illness for the rest of my life.

Unfortunately this explanation backfired and he interpreted my presentation of the facts as me having a negative attitude and limiting beliefs. These beliefs needed to be bullied out of me so he ramped up the pressure.

While my brother recognised that there is a physical component to my illness he believed it was something that could be easily fixed by a visit to a private doctor. When I refused to spend my small amount of savings seeing the doctor he had chosen, the doctor he believed could cure me, he saw my disobedience as me refusing to make an effort to improve my health. In reality I did not want to waste my money seeing a doctor who charged £400 an hour and did not specialise in my illness. Instead I chose to spend my money on other treatments I believed could improve my situation. Sadly my brother could not accept my decision and the arguments continued.

Things became so bad I was scared to be in my own home. Just being around him could trigger a panic attack. I was constantly on edge never knowing when the next onslaught of verbal abuse would come. I’ll admit that my ME/CFS does make me more prone to anxiety. We all know how our nervous system is on overdrive! The problem was compounded because I was too ill to leave the house. I was trapped with my bully 24/7.

I was doing all the things you should do when someone is bullying you. I stood up to him. I spoke up about what was happening. My mum tried to stop the bullying but she lived in another country so couldn’t do much to help. I wrote him a letter explaining the harm his bullying was doing to my health. Nothing worked. He was relentless.

In his mind he was helping me. He was doing this for my own good. He explained that it was short-term pain for long-term gain! 

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Thankfully after three months Dad was released from hospital and as soon as he returned home the bullying stopped. A few weeks later my brother moved out and I could finally relax in my own home.

While I wanted nothing more to do with my brother our parents were eager to see us reconciled. Over the next year we had several conversations and exchanged several letters but every communication we had confirmed to me I’d made the right decision to cut him out of my life.

He showed very little remorse for his behaviour because he genuinely did not see what he done wrong. He explained that as my brother it is his duty and responsibility to make me do what is best for me. I can not have a relationship with someone who holds that belief. 

I have the right to choose how I manage my health and what treatments I try. I can not have a relationship with someone who believes they have the right to take control over me, no matter how well meaning their intentions.

Unfortunately my story is not unique. In ME/CFS forums I frequently see people talking about the challenges this illness places on their relationships. How their family members lack understanding or compassion. My heart breaks at how cruelly some people are treated by the family they desperately want (and need) to support them. 

I believe much of this behaviour stems from the fact people are poorly educated about our illness. That is why I have dedicated a whole section of this website to articles explaining ME/CFS. I encourage you to share these articles with your friends and family to help them understand the challenges of living with this serious, debilitating illness.

In February 2019 I began treatment with Dr Lam. In the initial consultation I was told my health issues weren’t too severe and I would be back at work in 9 to 12 months. Four months later I was bedbound!

There were two elements to his treatment. Liposomal vitamin C to support my adrenal glands and various detox protocols to eliminate toxins from my body. Apparently I was overloaded with toxins and these were causing my fatigue.

The vitamin C worked well and I could feel my body becoming calmer and more stable. However the main detox method, liposomal glutathione, caused me to rapidly deteriorate. When I raised some questions about his protocol they explained I had to feel worse before I felt better so I pushed through. At the time I had limited knowledge about detoxing so I trusted their advice, after all I was paying for their expertise so what was the point in ignoring it.

Over the space of a couple of months my health worsened significantly. My body felt as though it had been poisoned. Simple movements like trying to feed myself could trigger a big crash. When I walked my legs would collapse from underneath me.

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I was charged $150 for a 4 minute consultation

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As my health continued to deteriorate I was referred to more senior members of the team and then eventually Dr Lam himself (I believe he only consults on the most difficult cases). Up until this point they hadn’t changed my protocol, I kept asking about taking a different approach but they refused. I thought Dr Lam would review my case and come up with a new plan – oh boy was I wrong!

He charge me $150 for a four minute consultation during which he said I was too ill for him to help me. I needed to return in three days for another $150 appointment because by then my health would have improved and he will be able to help me. At this point I’d been bedbound for several weeks, there was no way my health was suddenly going to improve in three days.

This was the final straw. I’d lost faith in their ability to help me. When I told him I would be stopping treatment he agreed that would be best because he did not know how to help me! If he didn’t know how to help me why was he going to keep charging me $150 per consultation?!

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I spent the last £2500 of my savings on a treatment which had left me bedbound

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In hindsight there was lots of red flags but in my desperation to recover I either didn’t see them or chose to ignore them. Perhaps the biggest warning sign was their secretive and changeable pricing structure which made me uneasy from the start. But like I said – desperation! When they’re promising you recovery in nine months sometimes common sense goes out the window.

I spent the last £2500 of my savings on a treatment which left me bedbound and penniless. Little did I know I this was the start of my journey with severe ME. I was to spend the next three years lying in the dark.

While I don’t think Dr Lam is a complete con artist he certainly is not knowledgeable about ME/CFS. For healthy people suffering from burnout his approach may work well  but his one size fits all approach does not work for a complex chronic illness like chronic fatigue syndrome.

In four months I went from being semi-independent to completely bedbound, unable to wash myself or feed myself. At times I even struggled to talk. 

No longer able to walk the six steps to the toliet I was forced to wee in a bucket by my bed. Even then sometimes the movement from bed to bucket could trigger a horrendous crash.

My food had to be liquidised because I didn’t have the energy to chew. Often I had to lie down and rest halfway through a meal because I simply didn’t have the energy to stay upright.

I went for 18 months without washing my hair! Having a bath would leave me exhausted and in pain for four days so I decided to stop washing! On good days I could “wash“ using a baby wipe or wet flannel but most of the time I couldn’t even do that.

Light sensitivity was, and still is, a big issue. I have spent 3 years lying in the dark.

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I went for 18 months without washing my hair & had to wee in a bucket by my bed

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I reached out to the French ME charity Millions Missing. They put me in touch with a functional medicine doctor who specialised in ME/CFS. The best bit was I didn’t have to pay, my treatment was covered by state health care!

The ME doctor believed the cause of ME/CFS was an underlying gut infection. Interestingly I’d also managed to blag a free consult from a functional medicine practitioner I had seen in the past. She also thought I had an underlying gut infection driving my problems.

She believed the reason I reacted so badly to Dr Lam’s treatment was that my detox pathways were blocked so the toxins I was releasing as part of his detox protocols couldn’t be eliminated, instead they recirculated around my body poisoning me. This was worsened by the fact his treatment aggravated my gut infection which released yet more toxins into my system.

Both practitioners gave me an assortment of supplements and protocols to follow. The problem was due to the severity of my condition I was super sensitive to supplements and an increasing number of foods.

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I had an underlying gut infection driving my problems

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It’s been a slow process but there has been some improvements. After the first year I no longer felt horrendously ill. The one thing which helped significantly was grapefruit seed extract. It’s a natural antimicrobial which helped kill off the bad bugs in my gut. I was also taking binders which would absorb the toxins ensuring I pooped them out rather than allowing them to be reabsorbed and recirculated in my body.

Unfortunately my improvement then hit a plateau. For the next two years nothing much changed. I was still very sensitive to medication and supplements so doctors couldn’t do much but thankfully over the last few months I seem to have turned a corner.

Its now January 2023 and after nearly 4 years of severe ME I’m proud to announce I can now feed myself (although Dad cuts up my food for me). I walk to the toliet 80% of the time. I move around my bedroom without it triggering a crash. Dressing myself isn’t the challenge it once was. I have even started washing my hair!!! I only do it once a month because it takes 1-2 days to recover but the PEM is much less severe than in the past.

Here’s hoping the improvements continue and 2023 will be the year I get my life back!

Before becoming ill I was a people pleaser, a helper, always putting others needs before my own. Having ME/CFS has forced me to prioritise myself. I have become much better at standing up for myself and putting my own needs first.

It definitely hasn’t been easy. Learning to set boundaries and saying “No” to people definitely didn’t come naturally. I still sometimes feel selfish for prioritising my own needs but I have learnt to step back from the situation and question whether I really am being selfish. More often than not I’m simply asking for something many people would ask for without a second thought.

My newfound assertiveness did have an unexpected impact on my relationships. For 30 years I had been a people pleaser, my family were used to me always doing what they wanted me to do so when I started prioritising myself and saying “No” there was a lot of push back from certain individuals. 

I had never argued with my family until my early 30s, then oh boy, did I make up for it! The majority of our arguments were related to my health and how I chose to manage it. I was so determined to forge my own path and not allow others to control me or dictate what treatments I tried that it gave me the fire to fight back and stand up for myself. Had I not been so ill I honestly don’t think I would have stood up to my mum and brother in this way. I’m grateful to ME/CFS for making me a stronger, feistier person.

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I’m grateful to ME/CFS for making me a stronger, feistier person

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