Chronic Fatigue Syndrome (ME/CFS): What It Actually Feels Like

Wow! It feels nice to be back to my favourite place in the world, my blog, my love. But today it seems that the world has rotated 360 degrees. As I was trying to figure out how to tap into this new world order I thought the best way is to ask my Higher Power to guide me through. And what a better way to do that, other than recite a prayer ‘Dua Istikhara’ a supplication used by Muslims to seek guidance from Allah before making a decision. If we just read the translation of this supplication:

“O Allah, I seek guidance from Your knowledge and power and ask You from Your great bounty. Surely, you can do it, and I am not. You know, and I do not, and You are the Knower of the unseen. O Allah, if You know that this matter is good for me in my religion, life, and end, then decree it for me, make it easy, and bless it for me. But if You know that this matter is bad for me, in my religion, my existence, and my end, then turn it away from me and turn me away from it, and decree for me what is good wherever it may be and make me content with it.”

This supplication brings so much clarity to me, although in majority of the Muslim families in particular from Southeast Asia has restricted the benevolence of this supplication to merely seeking divine guidance before accepting or rejecting a marriage proposal. Yet there is so much more to this Dua’s mercy which is more than receiving greenery or dark coloured symbols in dreams. There are quite a few misconceptions like receiving immediate answers or even delegating the task to make the supplication of Istikhara to some saint like person. All these connotations have no direct link with Sunnah of Prophet Muhammad saw.

So where have I been all time, to begin with it all started somewhere between 2018 and 2019 when I gradually started to lose my thoughts and words, I just could not intellectualize complicated words. In my daily life I was getting much slower, my work started to suffer as I couldn’t concentrate or do simple cognitive tasks. Even the gym and exercises were bringing sickness, headaches and extreme fatigue.

When I could have done with some relaxation and ease, my mother started to age and for the first time in my life I was witnessing how a very strong professional get goer began to decline. As she started to feel age in her body, her mind was filled with anxiety as to what the future will bring to her. She was seeing her peers, older relatives and even her younger brother leaving this world and somehow she quietly began losing herself.

In the midst of her fears, she suddenly made me the incharge of the family and handed over financial management of house. I was put in the unbearable position to handle something that I hated, dreaded, feared the most “Money”. I was and probably still so afraid of money that even seeing numbers and stepping into a bank shuts down my brain.  

So there I was already down with extreme fatigue and mental chaos I had to not only see money but was forced to calculate and touch it. Time started to pass and instead of getting better I was falling deeper in a dark place.

Each day I had to struggle to sleep and felt worse on waking up, couldn’t even stand or think properly for at least 1 -2 hours post-waking up. It would take me 3 hours to do simple things that one could finish in 20 minutes because my brain was not able to synchronize routine tasks.

In addition to pulling up myself every day with immense will power and physical force I had to look after an aging parent and my lovely cat Coco, to pay the utility bills, prepare lectures for my students, order groceries, and at times receive urgent calls at work from my cook that yogurt is finished and I should make some immediate arrangements to send it home.

What was interesting that I was unable to ask for help from other family members, I didn’t even realize what exactly I needed and from whom. Whenever I tried to write, even read a few paras or even paint for relaxation I felt dizzy as if I was about to faint.

As headaches became part of my daily life everyone around me got panicky especially my mother. I was taken to a neurologist, thankfully everything was fine except that I was put on migraine prevention medication. Exercise which used to be my passion was impossible to do, post workout sickness lingered for 3 to 4 weeks. Resultantly, I had to completely stop it.

Having no other probable cause I assumed that I had depression- so the journey began to meet with renowned psychiatrists and psychologists for my 24-7 tiredness and cognitive block. I have suffered from depression and been on anti-depressants since my teenage; however, this time I didn’t feel depressed. All I had, was physical weakness, tiredness and mental blockage but nothing negative or depressing at the emotional level.

My experience with anti-depressants has been quite positive, as they have been Allah’s mercy and I was able to complete my education, enjoy my life and complete tough legal training and then started working full time. Yet they were not doing their magic anymore and my fatigue tiredness was not going anywhere. So what was the problem?

Like everyone else in the world I also turned to google baba for self-diagnosis. Every time I searched symptoms results showed “chronic fatigue syndrome-CFS”. It was the most bizarre thing and I was like really! Now tiredness is also a syndrome. What a load of absolute rubbish! CFS… I wondered if these medical researchers would declare sneezing a syndrome. Thus I ignored and moved on.

During my random searches for fatigue on YouTube a female podcaster Raelan Agle popped up regularly. When I read her profile she didn’t seem reliable as she was neither a doctor nor a psychiatrist nor a psychologist, not even a health care professional so there was no way I was going to listen to her advice.

I was really anxious to pull through at work because I started to get late in my submissions or lagged in preparation; but like always Allah showed His mercy and my colleagues helped me immensely and even my boss was very patient and understanding as my condition worsened over the time.

There were days when I would become bedridden even the smallest chores took a toll on me. During these intense fatigue days all I could do was lie on my sofa all day and sleep, and on waking up I would look at my work desk and simply try to walk a few steps to answer an email or respond to a call or even message back. But nothing was possible, I had to even move to Dubai for a few months to get better, my two wonderful friends, Azi and Abru, were there, eager to meet me. Yet every time, I had to cancel because I couldn’t even walk to the door. I didn’t understand what was happening to me, so I didn’t know what to tell them. Saying that I was simply too tired to meet felt embarrassing.

This didn’t happen just once—it happened with my relatives and friends and many other people as well. Instead of telling them I wasn’t up for meeting, I would quietly disappear, because talking and explaining would tire me even more, and staying silent felt much easier.

On those days as I could not do anything else I listened to Raelan Agle. When I actually watched her videos she made a lot of sense and to my great surprise she also went through exactly the same condition as I was in.

There is actually a medical term for my condition: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The World Health Organization recognized Myalgic Encephalomyelitis (ME) as a neurological disease in 1969 when it included it in the ICD-8 classification of diseases. The US government’s Centers for Disease Control and Prevention describes ME/CFS as a serious and often long-lasting illness that prevents people from carrying out their usual activities, making both physical and mental exertion difficult.

According to the Mayo Clinic, it is a serious, long-term neuro-immune disease characterized by profound fatigue, cognitive dysfunction, sleep problems, pain, and autonomic dysfunction, all of which worsen with activity (a phenomenon known as post-exertional malaise-PEM).

There is currently no known cause or cure for this condition and is therefore managed symptomatically. In severe cases, some patients remain homebound or even bedbound for decades; even basic tasks like using the toilet or personal hygiene can become extremely difficult. Relationships, families, and marriages suffer, many people lose their jobs with little community support.

Fortunately, some developed countries, such as the USA, the UK, and many in the EU, recognize ME/CFS as a legitimate health condition and provide benefits and government support. However, in many places, it is still dismissed as a psychological issue—often misdiagnosed as depression.

Yet there is light at the end of the tunnel that people do better and some even return to their previous energetic life. It requires effort which is not physical but emotional and spiritual; this illness literally stops the world for a person and one becomes only a witness of the frailty of life. Whenever possible even with a pinch of energy to keep telling yourself that you can and you will get out of this. It is that one point which compels one to only focus on their health and well-being, to stop from running after things that don’t matter, to throw away the emotional baggage of childhood, loss and pain or whatever that is making us heavy. Because this condition forces us to remove the past burdens as they are making us really tired.

I had to also give up on the version of myself which does not align with my energy. I am not a get goer, hard core ambitious person, all I needed was to slow down and really try to understand who I am now and what actually serves me better. Looking back I could now clearly see my pattern from my childhood as I avoided sporty activities and preferred low impact activities.

No wonder my classmates and some of my teachers used to call me lazy daisy. I remember whenever I had to play cricket in school I would always fight to do batting and tell the other batsman/kid to do my running on the pitch as I would not move an inch. While playing badminton with mum she used to get irritated that I would only take hit when the bird is right on my face as I refused to jump or run sideways. 

Even when I started to practice law I used to work like a crazy person for 3 days, give my 200 percent and on the fourth, fifth and sixth day collapse with flu and fatigue. Luckily a miracle happened I received an unexpected offer to do chamber work in a corporate law firm and then I was back into my flow with less physical exertion I would work for weeks before I used to crash. Once my salary was also deducted due to my absences but fortunately I performed very well on good days so the decision was reversed.

I think the problem happened when I tried to over perform of course I started to receive appreciation of how perfect and organized my work was. I became addicted to my work and the cycle of over-performing and getting great results. Of course it was an unsustainable plan and totally out of my league.

Now on this day I am able to write these words so maybe something is rewiring in brain and I believe to be on the path of recovery. Every day is new and I have to take things slowly at my own pace, while prioritizing my well-being, and most significantly retraining myself to be comfortable with imperfections.  Watching what I eat and avoid nutritional deficiencies is crucial since exercise is out of the question for some time, so I try to stay active within my energy limits.

I am under my own care and hoping to get back on a new track. Before I leave I wanted to share that University of East Anglia and Oxford Biodynamics has achieved a ground breaking blood test, though still under medical trial, but it is believed to diagnose ME/CFS with 96% accuracy. Through this test doctor will be able to see a specific and consistent pattern in the way DNA is folded in the patients of ME/CFS. In patients with ME/CFS, this DNA pattern is unique and is not found in healthy individuals.

So with high hopes and deep desire to return to this platform soon, I take your leave for now...

Sonya.

20 April 2026