Table of Contents
Guide to CFS/M.E. – What is it?
I hope you find this to be a fascinating guide to CFS/ME. Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME), is a complex and debilitating chronic illness. It is predominantly characterised by extreme fatigue that doesn’t improve with rest and is not caused by other underlying medical conditions. The exact cause of CFS/ME is still unknown. This remains a subject of ongoing research and sometimes controversy in the medical community. However, its impact on those who suffer from it, like me, is unequivocally severe and life-altering.
A Fascinating Guide to CFS/ME – My Story
I was diagnosed with CFS/ME nearly thirteen years ago. I was incredibly unwell by the time I was finally diagnosed. The doctors treated all my individual symptoms, but could not work out the cause for them. I was extremely exhausted, all the time. Sleep did not help me recover. My body ached constantly. I suffered with painful joints, however, it varied daily which joints would hurt. I regularly struggled to walk. Unfortunately, I also suffered with constant nausea, sore throats, brain fog and a sensitivity to noise. I suffered with a terrible case of Guttate Psoriasis (my immune system was attacking itself) then finally, I started lactating (my children were 10 and 5)!
My prolactin levels had soared! At the time I was taking about 20 different tablets, one of which was an anti-sickness drug. The doctors explained to me that normal prolactin levels are around 20-30ng/ml. They continued to state that some people taking the anti-sickness drug I was using can react to it, raising their levels to around 2000ng/ml. However, my levels were above 9,000ng/ml! They feared I had a brain tumour! Thankfully, following a speedy brain scan, they were able to assure me I didn’t have a tumour and I did, indeed have a brain!
The Endocrinologist finally diagnosed me with CFS/ME. I’ve been managing the condition ever since and now I am a self employed writer. It therefore felt like the right time to tell my story and write ‘A Fascinating Guide To CFS/ME’.
Guide To CFS/ME: Symptoms
CFS/ME manifests through a range of symptoms that can vary significantly in intensity and combination from person to person, day to day, hour to hour. The most common symptoms include:
* Severe Fatigue:
This is not the kind of tiredness that can be alleviated by a good night’s sleep. The fatigue is profound, persistent, and worsened by physical or mental activity.
* Post-Exertional Malaise (PEM):
A worsening of symptoms following physical or mental exertion that can last for days, weeks, or even months.
* Unrefreshing Sleep:
Despite sleeping for long periods, individuals wake up feeling unrefreshed and unrested. I like to compare it to a faulty rechargeable battery: despite being plugged in to recharge (i.e. sleeping), my body remains on empty. I also dream, a lot! It’s like my body refuses to let me slip into deep sleep!
* Cognitive Impairments:
Often referred to as “brain fog,” this includes difficulty concentrating, memory problems, and an overall reduction in cognitive function. When my symptoms are flaring, it often takes me longer to process what is being said to me (to the point people may think I’m ignoring them). Likewise, I can’t always find the right words when speaking, they hide from me! Very frustrating!
* Pain:
This can include muscle pain, joint pain without swelling or redness, and headaches of a new type, pattern, or severity. I also experience a lot of pins and needles, like my nerve endings are on hyper-drive!
* Orthostatic Intolerance:
Symptoms worsen when standing upright and improve when lying down. This can include dizziness, light-headedness, and fainting.
* Other Symptoms:
These can include sore throat, tender lymph nodes, and sensitivities to light, sound, and temperature. A weird side affect I also experience, my body over-reacts to medication, making side-effects on some treatment’s extreme! For more symptoms, please visit M.E. Research, they provide a detailed description of the condition and the vast array of symptoms we can experience as sufferers.
Guide to CFS/ME: Variability and Individual Impact
As you will see from my list above, one of the most challenging aspects of CFS/ME is its variability. The severity and combination of symptoms can differ widely between individuals and even fluctuate within the same person over time. My own symptoms can vary within hours on the same day! Fortunately, like many other sufferers I generally experience mild to moderate symptoms daily if I manage it with pacing and meditation. This allows me to maintain some level of daily activity. I judge how much charge there is in my battery and prioritise my daily tasks around that. Sadly, others may be bedridden and require assistance with basic tasks.
This variability makes it difficult to diagnose and treat CFS/ME. What works for one person might not work for another, necessitating a highly individualised approach to management and care. Most sufferers, like me, receive treatment for the individual symptoms, like pain relief medication. Personally, as I mentioned earlier, I have found meditation to be a great source of comfort, so on better days I am able to reduce the number of tablets I take.
Challenges of Working with CFS/ME
For individuals with CFS/ME, maintaining employment can be incredibly challenging, if not impossible. The unpredictable nature of the illness means that sufferers may have good days and bad days, making consistent attendance and performance at work difficult. It is important therefore, in this guide to CFS/ME I highlight the specific challenges faced by those trying to work with the condition:
- Unpredictable Fluctuations in Health: Sudden flare-ups of symptoms can make it hard to commit to a regular work schedule.
- Cognitive Impairments: “Brain fog” can significantly impact job performance, particularly in roles that require high levels of concentration and cognitive function.
- Physical Limitations: Severe fatigue and pain can limit the ability to perform physical tasks, from sitting at a desk for prolonged periods to more physically demanding jobs.
- Social Isolation: The need to conserve energy often means missing out on workplace social interactions, which can lead to feelings of isolation and loneliness.
- Stigma and Misunderstanding: CFS/ME is often misunderstood or not taken seriously by employers and colleagues, leading to a lack of support and accommodations in the workplace. It doesn’t help, that you can look great, ‘normal’, but be feeling rock bottom and in agony. My sister always says she can tell by my eyes when I am struggling, even though I look good.
Guide To CFS/ME: Navigating Employment
For those with CFS/ME who can work, several strategies can help manage the condition while maintaining employment:
* Flexible Work Arrangements:
Part-time work, telecommuting, and flexible hours can help accommodate fluctuating energy levels. In my case, I’m self-employed. My writing allows me to work from bed, if necessary, and I keep my hours part-time, so I can work around my good and bad days/hours. I love being The Content Creator and although it could be lonely, I attend women’s business networking groups at least once a month, so I still feel like I’m engaging with others! Plus, of course, I regularly chat to my clients about our monthly goals for their websites.
* Pacing:
Also known as energy management, pacing involves balancing activity with rest to avoid overexertion and manage PEM. I will often take a nap in the afternoon, to try to re-charge the battery!
* Workplace Accommodations:
These might include ergonomic adjustments, a quiet workspace, and the ability to take breaks as needed. Certainly, having an understanding employer is a bonus. In my previous role my boss’ sister also suffered with the condition, so I received a lot of support – one of the lucky ones.
* Open Communication:
Informing employers and colleagues about the condition can foster understanding and support. It is difficult to get loved ones to understand the condition, let alone friends and work colleagues. However, using an analogy, like my battery one, does help. I also found a great video that really explains the condition and the different levels perfectly, so I’ve added it here What is ME/CFS? (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) (youtube.com). Alternatively, why not get them to read my guide to CFS/ME?
Guide To CFS/ME – Conclusion
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is a serious and debilitating condition that affects every aspect of a sufferer’s life. As you have read, I speak from personal experience.
Its variability and the severity of its symptoms make it a challenging condition to manage, particularly in the context of employment. Greater awareness, understanding, and accommodations are essential to support those living with CFS/ME in their personal and professional lives. That’s what I wanted to highlight in this blog, ‘A Fascinating Guide to CFS/ME: My Personal Story’.
As research continues to seek out the causes and treatments for CFS/ME, it remains crucial to listen to and advocate the needs of those affected by this life-altering illness.
Guide To CFS/ME: Final Word
If you are a sufferer, take each day and hour as it comes. I hope you get the opportunity to still work a little, it helps to keep me sane! If you are not a sufferer and just wish to know more about the condition my biggest advice would be to listen, truly listen to what we are saying about how we are feeling. Exhaustion is NOT tiredness; it is deciding what level your battery is at. Deciding if you have the energy to literally drag yourself to the toilet or not for a normal bodily function! Above all else, please, be kind.
If you have enjoyed my guide to CFS/ME and would like more help and information please visit The M.E. Association or Action For M.E., plus the aforementioned M.E. Research.
Thank you for reading my blog, ‘A Fascinating Guide To CFS/ME: My Personal Story’. Please visit my website to discover more about my work here.