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https://disabilityunit.blog.gov.uk/2021/05/12/me-awareness-day-living-with-me/

ME Awareness Day: living with ME

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ME and me

I was diagnosed with ME (Myalgic Encephalomyelitis) in 2015 after becoming increasingly ill during my first year of university. The following year was spent mainly horizontal, as I experienced post-exertional malaise, dizziness and intense brain fog. I desperately tried to keep up with my coursework from the confines of my room, and quickly discovered I was unable to continue socialising or partying. This changed my expected experience of what university would be like. I felt isolated, like I was missing out on the ‘usual’ student experience, which in my mind was non-stop partying! 

Before the COVID-19 pandemic, remote options were not widely available. Despite support from my university, managing a degree felt very challenging. With a range of reasonable adjustments, including deadline extensions, taxis to and from campus and supportive friends ferrying books to and from the libraries, I managed to get by. 

In 2016 I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a type of autonomic dysfunction, which means your autonomic nervous system, responsible for ‘rest and digest’ and ‘fight or flight’, is not working properly. In my case this caused intense dizziness, tachycardia, chest pain, migraines and nausea whenever I was upright. I was relieved to receive this diagnosis within two years, as the estimated average diagnosis time is just under 6 years

Eleanor is standing outside at her graduation, wearing a yellow dress and dark green and black graduation robes. She is holding a degree scroll and smiling.

Living with ME and POTS 

While there currently is no cure for either condition, treatment options for my POTS have also reduced some of my ME symptoms. These include increasing my daily intake of both salt and fluids, pacing of energy levels and trial and error with various different medications under my consultant. 

I was very lucky to attend an ME/CFS clinic whilst at university, and was offered a series of sessions with an Occupational Therapist who helped me learn about energy pacing and making my daily routine less energy intensive. Although my physical results were minimal, I greatly appreciated being able to talk through the limiting effects of my ME with someone. The greatest improvements in my health have been due to effective treatment of my POTS.

I have been incredibly lucky that the severity of my symptoms have reduced so much. In the past couple of years I have been able to go for walks again, slowly building up my tolerance to being upright, and have been able to enjoy doing things that for a while had been impossible.

Spoon Theory

As an energy-limiting chronic illness, the focus of my treatment plan for ME, has been about managing energy levels. I use ‘spoon theory’ to help with this. Each ‘spoon’ refers to a unit of energy. Someone without ME may have unlimited, or vast amounts of ‘spoons’ to use each day. Someone with ME will have a limited number of ‘spoons’ each day, which may fluctuate over time, and everyone’s experience is different. 

For example, I might start the day with 20 spoonfuls of energy in my daily jar. The number of spoons I have each day can fluctuate vastly. In my current experience, showering uses one, preparing three meals takes five. An average day at work could use between 10 to 15 spoons. If I want to read, watch TV, or call a friend after work, that’s around another two spoons for each activity. Going for a walk is about three spoons. 

Based on this calculation, I would have used somewhere between 25 to 30 spoons that day, which exceeds the 20 spoons I began the day with. This would result in a flare in my symptoms, likely making me bed bound for a day or two. 

Each day, I have to try and plan ahead and work out how I want to use my energy. External factors such as intense heat, rain, an infection, or excessive stress would greatly reduce the amount of ‘spoons’ available to me.

The image shows a row of metal spoons across the top of the frame on a table. The background is a light grey colour.

Managing my energy levels at work

Working from home during the pandemic has provided a unique and favourable working pattern for me – I don’t have to waste any ‘spoons’ on commuting. Working full time hours still means I’m in bed by 8pm most evenings, and my weekends are often spent resting at home to ensure I can manage my energy at work the following week. 

I joined the Civil Service after graduating with a masters, and am currently completing the Communications Fast Stream scheme. Balancing my energy levels to manage a fast-paced full-time job in the Disability Unit required me to discover a new baseline which worked for me. 

Working in the Disability Unit as someone with a non-visible disability means I feel very motivated by the work I am involved with, alongside my colleagues in DU. 63% of my team have a diagnosable health condition or ‘impairment’. 50% of my team identify as currently or previously disabled as defined by the Equality Act (2010). This helps me to feel able to bring another lived experience of disability into the workplace. 

Utilising flexible working hours and reasonable adjustments have helped me to manage my energy levels as best as I can, and helps to keep my other symptoms at a manageable level. The severity of my conditions have decreased since my initial diagnoses, and I feel very lucky to currently be well enough to work. 

Tips for managing ME...

in the workplace:

  • pace yourself! It’s a good idea to avoid back-to-back meetings where possible
  • write everything down, so you can refer to notes when brain fog hits (and it will!)
  • take frequent breaks or rests as required throughout the day
  • where possible, use flexible working hours to mitigate flares

for colleagues:

  • remember your colleague may need extra ‘thinking’ time or breaks between meetings or tasks 
  • writing tasks or actions in an email can be helpful to refer back to
  • the experience of people with ME varies greatly, so it’s always best to ask what will benefit the individual 
  • encouraging flexible working or remote working can make a work culture feel more inclusive 

Find out more about ME:

What is ME/CFS?

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a neurological condition of the central nervous system. CFS is often thought to be a misleading name as symptoms are far more wide-ranging than ‘chronic fatigue’, and this name still carries stigma. The causes are unknown but are thought to be triggered by a viral or bacterial infection, a traumatic event, or hormonal, immune or genetic differences.

Symptoms can include:

  • post-exertional malaise – exhaustion after activity/exercise, however small
  • cognitive dysfunction or ‘brain fog’
  • muscle and nerve pain
  • sleep disturbance
  • chronic flu-like symptoms
  • autonomic dysfunction – a part of your nervous system not working as it should
  • temperature dysregulation – the inability to regulate your body temperature
  • immune dysfunction – being more prone to infections

The image shows a millions missing event, with shoes laid out across the ground covering a large space to show how many people with ME are missing from daily life.

The history of ME

Thankfully progress has been made since the 1980s when ME/CFS was commonly referred to as ‘Yuppie Flu’, described as a ‘fashionable form of hypochondria’. There is still much progress that needs to be made, and the stigma attached to the diagnosis has been pervasive. Getting a diagnosis and treatment can be a slow process and misinformation about ME still exists in medical systems.

Campaigns such as millions missing have played an important role in demonstrating the very real and debilitating effects of living with ME, and the millions of people missing from schools, workplaces and their communities due to their ME. Shoes have been a powerful symbol since the first event in 2016, symbolising what people are missing from their lives due to ME.

In the wake of COVID-19, many who have developed Long Covid have started to notice overlapping symptoms and shared experiences with people with ME. There is some potential that the influx of Covid ‘longhaulers’ and research into their condition/s may help shed light on all post-viral infections and therefore help with research into and treatment of ME. 

Decode ME is a research study underway which is investigating if there could be answers to ME in our DNA. Their DNA study is the largest genetic study of ME/CFS in the world. They are investigating whether the condition is partly genetic, and if so, this could help discover what causes ME – possibly leading to appropriate treatments. 

ME Awareness Day 2021

ME Awareness Day is an annual international day of awareness on May 12 in honour of Florence Nightingale’s birthday, who documented her debilitating condition which closely resembled ME. We are all encouraged to learn more about ME and other poorly understood and closely related conditions such as Fibromyalgia, and listen to the experiences of those living with ME. The colour of this awareness day is blue, and we are all invited to pause at midday to #RememberME. 

You can find out more information about ME on the ME Association website, about POTS at PoTS UK or Dysautonomia International, and fibromyalgia

For further reading on living with a non-visible disability you can take a look at our blog.

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1 comment

  1. Comment by Jo A-Aali posted on

    Thankyou and well done for managing to write about your experience of living with ME , such a devastating condition to have to suffer

    Reply

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