A flashback to M.E.

If you’re a regular reader, welcome back and hello! If you’re a new face, welcome to The Cornerstone for Thoughts. A blog that I launched as a hobby subsequently became my portfolio and CV, the rest they say is history. However, if you’re new you wouldn’t know what gave me this corner of the internet a heart and some niche that it didn’t have prior to 2017. Let me give you a history lesson.

I am one of the 250,000 people who live with a condition that is still questioned by almost all healthcare professionals. Women are three times more likely than men to experience the condition. 25% of the 250,000 are severely affected to the point of being house or even bed-bound. The fluctuating condition means the symptoms can vary day-to-day, from one hour to the next, or minute by minute. People with the condition are up to six times more likely to die by suicide than the general population due to the isolation and disbelief of friends and experts. This condition is Myalgic encephalomyelitis more commonly known as Chronic Fatigue Syndrome (M.E./CFS)

An M.E. diagnosis is not an easy one to obtain. It’s unlike any other neurological condition where a diagnosis is given through criteria check. The way of diagnosing the condition is, ruling out other conditions such as Multiple Sclerosis or other assumed conditions. I’ll give you an insight into how I became one of the 250,000.

Myalgic encephalomyelitis, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness. It can affect anyone, including children. It’s more common in women, and tends to develop between your mid-20s and mid-40s. Common symptoms of ME/CFS include; feeling extremely tired all the time – you may find it very hard to do daily activities, still feeling tired after resting or sleeping, taking a long time to recover after physical activity, problems sleeping, such as waking up often during the night and problems with thinking, memory and concentration.

www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

In 2015, I noticed a burning pain in my foot that came from exercise. I at the time, brought new trainers and noticed the pain subside. Months later, I was noticing that I was tired after not much – arriving at lectures feeling absolutely shattered. Those around me suggested that I take chewy sweets to see if it would keep me awake – they did. I spoke to my GP who told me I had low vitamin B12 and I took the supplements where I noticed an immediate difference. I also cut gluten out, because I noticed the symptoms were made worse by eating wheat. The symptoms became manageable – so I continued living my life. 2016, I lived my life the way Instagram would tell you is the high life. A holiday to Dubai, collaborations with make-up brands, and becoming a gym bunny. A year down the line, I was coming to the end of my degree and entering the world of work. Only for the symptoms to become worse and give my life a whole new turn.

In 2017, I started a job in the city. The tiredness that I had experienced became unmanageable. I was becoming fatigued through conversation, falling asleep everywhere I could. Fatigue is something, lots of chronic illnesses share and something few people truly understand. Fatigue plagues everyday suffering; fatigue goes beyond tiredness. It’s going for a run with bricks in your rucksack whilst hungover. I wanted to believe my fatigue was tiredness by trying to exercise through it and going to bed earlier. If it’s fatigue, no early night or exercise regime will sort it. Weekends became blurred. Weekdays became unbearable. The fatigue the doctor tried to blame on self-esteem and anxiety the usual tropes, given to women in distress. I explained repeatedly that my anxiety was at zero and I felt at my peak. Two weeks later, the nurse called apologizing that the GP who told me I had low self-confidence had in fact been wrong because I had extremely low B12 levels requiring a series of injections to rapidly recover the losses of vitamins. Shortly after my series of injections, I was not improving but worsening. The nurse had advised I’d notice an improvement in the short term but would have to be prepared to have these injections for a lifetime. I began to get pins and needles in my hands and feet a common symptom of low B12. How could I have these symptoms after an extreme course of injections? I tried to give it time before panicking but it was too late. My mobility became worse which flagged concerns with my GP. At that same appointment, I was signed off work and didn’t return to a normal way of working for six months; I was in and out of hospital regularly. Hospital radios, cafes, and healthcare assistants became my normal. I’d swapped the private beaches of Dubai for a regular blood test.

My GP referred me to a neurologist after having serious concerns this could be more than just a B12 deficiency. At the appointment, the neurologist put needles in my feet where I felt nothing she also tested my reflexes which were shot to pieces. She asked the usual questions such as diet, lifestyle, and whether I smoked or drank. I was tip-top on paper but looking at me I could barely stay awake, hold a conversation or move without assistance. The neurologist shared her predictions, one being peripheral neuropathy or Multiple Sceloris. I went through multiple tests before being diagnosed with M.E. At the time of diagnosis, my GP and neurologist shared the belief my condition or state of pain would be short-lived and that I should expect to return to a state of normality by the March of 2018. Unfortunately, M.E. in 2017 was very much believed that you could recover which is highly unlikely for most people living with the condition. I was told to gradually increase my exercise levels and register interest with the cognitive behavioral therapy team in my local area. Two treatment therapies are now heavily disputed by M.E. charities and health professionals. The National Institute of Health and Care Excellence (NICE) 2021 removed the two treatments from their guideline for treating the condition. Neither health professional could give me the treatment instead I was told to be patient and manage my symptoms. Despite, not really not knowing what was triggering it – at this time, having a conversation for 10 minutes would tire me for weeks afterward. I spent months living in my bedroom or having to account for hours and days of rest after the mildest exertion. I still have these days where I am unable to tolerate conversation or hold conversations due to the inability to process this information whilst surrounding noise and sound are around.

Between 2018-and 2020 I lived in a state of remission. Remission is incredibly misunderstood, you are not recovered but your symptoms reach a point where they are not worsening but they’re not improving. Think of it, like the series Richard Hammond hosted, Brainiac – when he resigned the presenter role was given to comic Vic Reeves. The show just averaged at the same as it was, didn’t improve in any sense. Unlike Waterloo Road, where the unrealistic move to Scotland made it a car crash. I managed the condition through pacing and accepting my limitations. Listening to my body became my go-to.

Then in 2020, during the pandemic, I experienced a relapse. I had driven into work with a tingling sensation in my arms – a reminder of how my ME had started. I panicked but hoped it was just a glitch. Hours after arriving at the office, the left side of my body stopped functioning and I was unable to walk without significant support or aid. My GP called an hour into this lack of function and he instructed that I drive home during the quiet traffic period and should pause driving until I saw an improvement. This wasn’t the first time in 2020 that this event had happened, twice I’d experienced this loss of sensation but quickly resumed my life. October was very different. I was unable to feel the temperature of the bathwater, I was unable to walk with holding onto something because my balance was so off. Fatigue on the other hand had massively improved, I was managing the working day whilst working from home with no problem. This was different from the first time, these sensations had flared because I was managing to live life with assistance and support. My GP felt that I needed to be referred to a new neurologist because he couldn’t advise on what the cause was or whether this was M.E. related. This neurologist, in fact, was incredibly insulting. He suggested I visit a pain clinic to me which is a punch in the face that gives me no support, assurance or treatment. Nerve pain is not a pain that can be meditated away despite what the NHS CBT page would have you believe. To this date, the nerve aspect is still questioned and unknown because the severity and paralysis cannot be put down as M.E. I do know, that I have large fiber neuropathy – a form of nerve damage. The cause is usually chemotherapy or diabetes but in my case, neither applies. I am hoping that in July, I may be given some light from a new neurologist. I’ll keep you posted.

Neuropathy is damage or dysfunction of one or more nerves that typically results in numbness, tingling, muscle weakness and pain in the affected area. Neuropathies frequently start in your hands and feet, but other parts of your body can be affected too.

Cleveland Clinic, Neuropathy – Peripheral Neuropathy

We are now in 2022 and I am still unable to feel my left leg or use it in the way I once could. When M.E. was first diagnosed it was just my hands and feet that were the problem, not my entire movement. I am now trying to navigate my life with limited mobility – in 2019 I was finally resuming life with spinning and a Bollywood dance here and there but this time I haven’t been able to resume this. I still cannot get back on a bike the way I once could without significant issues arising. I will get there, I know I can but it’ll take time to get there. Chronic illness often means you develop huge amounts of patience because there isn’t any other clutch to use without feeling at a complete loss.

For the majority of people who live with M.E. their lives are impacted for eternity. Very few people recover unless they were lucky to have a brief version of Post Viral illness. This is a minority despite the NHS webpage for M.E. suggesting recovery is possible. Five years later, I have improved in mild ways. I can now function on one late night in the week, but this is since adopting a flexible way of working. I have to have B12 injections every ten weeks, it was twelve but this time frame was too long for my levels. I now take a series of tablets a day to give me some form of sleep – I never thought aged 26 I would be needing sedatives to aid sleep but my GP thought otherwise. The GP believed that if I was given sedatives, I would be asleep when my pain levels would heighten. Everyone living with chronic illness would tell you that pain is heightened at night due to the sudden solitude. I am still managing my life through pacing because that’s all I have. I don’t have the privilege of treatment that other conditions have. Instead, I am left to navigate this complex and unknown condition solo. Imagine, covering for a cabbie in London without a Sat-Nav. I am grateful that sports massage has given me some movement back. Yoga has aided my mobility through now finding ways of stretching and improving the balance that was lost in 2020. Progress is small but every step feels incredible. I also am now back to a gluten-free diet – after being finally correctly informed that I did have a sensitivity and allergy to wheat. Wheat is flour – dairy I can eat without issue. Flour/wheat is the devil to my symptoms. I know I am very lucky to live a life that I do. 25% of people with M.E are so severe with their condition they do not leave their bed, house or room for the rest of their lives. Some require assistance through tube feeding. M.E. is difficult to understand due to the relapsing nature of the condition – I can some days do the things most normal people do without a second thought but on other days that same activity is impossible. The condition relapses and fluctuates. It can be triggered through what some would consider the mild activity. For me, heat induces my nerve damage worse despite not necessarily feeling temperature. I fear the climate warming up due to the possible impact it may have on my overall health.

For me, the condition is hugely misunderstood because few engage in discussions with the aim of wanting to learn. Ignorance is the major barrier to why the illness is still misunderstood by most. Half of my family are still clueless as to what the ilness is and the variety in symptom I live with. Some believe fatigue is an appropriate adjective for tiredness when it is not even in the same bracket. Some want to prescribe you with reki or mindfulness despite the condition being physical not mental. Long Covid has generated a buzz amongst post-viral illness because the symptoms we have endured for decades are being embodied through people living with Long Covid. In my opinion, had we listened to experiences of M.E. we may have had a better grasp on the ways of dealing and address the Long Covid public health crisis.

A few helpful places to aid your learning:

Action for M.E. – Symptoms and What M.E. feels like

BBC Newsbeat – M.E. and me

Unrest Documentary available on Netflix.

Long Covid: How knowledge of M.E. can help people with Long Covid

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