Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The sickness of being dead while still breathing
What is ME/CFS?
ME/CFS is an incapacitating fatigue that is nothing like normal tiredness and may develop progressively or suddenly. ME/CFS is an invisible physical condition that affects sufferers on physical and socio-psychological levels. Although the causes are not fully known, NHS recognises four stages of this disabling condition.: mild, moderate, severe, and very severe. Regardless of the stage people suffer in isolation, which may lead to depression, however, ME/CFS is not depression.
Additionally, the medical world states that there is no cure or that recovery is rare. Precisely, there is not a quick or easy fix. Still, there are ways to get better. I have used Ayurveda, Reiki, Crystals, Yoga, Meditation, Cognitive Behavioural Therapy (CBT), and Toby Morrison’s program. I want to share with you how I got better in a year after suffering for 11 years of moderate, and for over a year, severe ME/CFS. I was bedridden and felt like I was dead but alive. During that time my daughter got a home education to look after me. Everything happened in the background of Domestic Abuse (DA) that aggravated my condition. Still, I have survived and got better.
Personality type A -more prone to get ME/CFS
ME/CFS usually affects active people, the personality type A- perfectionists. They’re active physically or mentally or both. I used to be a Fitness Instructor, exercising 8h daily, I also got a master’s in criminology, and I have many hobbies. If you are active like me, then regardless of the stage, ME/CFS is the worst possible psychophysical torture. This torture may develop suddenly e.g., after an infection or gradually. Additionally, ME/CFS is invisible, so you deal with misunderstanding and undermining by some people and professionals. Because of that, you may be perceived as lazy, which is unfair and harmful because you crave to do things but your body refuses, plus you do not look ill. Recently I have been asked by a stewardess if, I was sure that I needed special assistance. This situation is one of many that I’ve experienced. I reflect that ‘if all sicknesses were visible, MRIs wouldn’t be needed.’
Is there a cure?
NHS recognises ME/CFS and tries to help patients but the knowledge about ME/CFS is at the stage of knowledge about cancer 60 years ago. There are no tests or medicine. Antidepressants and painkillers do not heal just help to cope with symptoms. So, when you suffer without therapy, you are in the dark. Additionally, ME/CFS may be mistaken for depression, which is wrong because ME/CFS is a physical, not a psychosomatic condition. However, ME/CFS may cause depression because you suffer, mostly in isolation, this is like you ceased to exist. You are a prisoner of your body. This is how I felt for years and why I want to share my story about how I have got better. ME/CFS bound me to my house, to my bed. I would describe ME/CFS as functioning on a 10% battery when I was at a moderate stage. By then I managed my twins, seven knees operations, university, and DA. However, when I was bedridden, I was on 3% of battery and I never charged above. The difference between me and a corpse was that I was still conscious and breathing. Almost dead, I decided to fight the most difficult fight in my life and trust me I went through difficult fights. Starting from fighting for and against my heroin-addicted sister, an alcoholic father, while my mum had 4th stage cancer. Just to mention a few. It’s a miracle but I survived and moved on. I started my career as a Fitness Instructor. Fitness was my way to cope with stress. However, fitness was taken away from me after the DA incident during which I suffered a knee injury. Still, all the above fights were nothing in comparison to fighting ME/CFS. My life motto is ‘nothing is a problem while you are healthy’.
No quick fix
There is not a quick or easy fix, but I got better in a year after 11 years of moderate ME/CFS and over a year of severe ME/CFS when I was bedridden. My condition got worse after my 7th operation which overlapped with the worst abuse from my husband and cat fewer. I burnt out totally, just after taking part in a couple of emergency court hearings regarding Non-molestation and Occupation Orders against my ex. I felt like every cell of my body was dead, paralysed. Thus, I started to research. I needed to find a reason, address it, and resolve it. I came across an American doctor’s article about ME/CFS, and I found answers and understood that I was a step away from being intubated to be fed. Also, I remember that the doctor said, ‘you will not see those patients at doctors because when they are bad, they are not able to reach a doctor, when they slightly recover, they do not feel like reporting it…’ Hallelujah! This was 100% me. The understanding was truly awakening and the fear of becoming intubated motivated me to do more research and find a solution.
At this stage of my illness, I called my GP. I was really scared but I was lucky to have my doctor. I told her that I was ambitious, had a master’s in criminology etc but I was so unwell, and I didn’t know what to do. I felt so useless and disappointed with myself, I could not work or do anything.
She said, ‘you are a personality type A, like me, I understand, I am sure that you are ambitious etc’. Her advice was, ‘whatever you do, have a 30 min break’. I started to do it and I was slowly getting better, but this was not enough. When I felt a bit better, I watched something till 11 pm and this made me worse. I also started a salad diet, which aggravated my IBS. I know now, that if you have IBS, you shouldn’t eat raw fruit and vegetables. Anyway, 30 min break after activities was not working for me anymore. Thus, I started self-help via natural therapies, some of them I knew and some I learnt and then I saw a light in the tunnel.
How I got better
Firstly, I avoided what drained me. I quit coffee, tea, cigarettes, alcohol, and withdrew from divorce procedures (another story about divorcing a covert narcissist). Secondly, I integrated what heals and energises such as ayurvedic herbs and treatments, crystals therapies, self-reiki, sleeping at 9 pm, a carbs and protein balanced diet, Toby Morrison’s baseline program and Iyengar yoga. Why yoga? Yoga does not make you tired like other exercises but gives you energy. While bedridden, you cannot exercise because any type of physical or mental exertion can make you worse. Therefore, yoga is good, and I did bed yoga with alternate nostrils breathing and meditation. Those practices energise your body and calm your mind.
Your mind is an important part of your healing because your body follows your mind. If your body, mind, and emotions are not in balance there is no way to heal. I was at a point where in my mind I was Jet Lee who is known to be too quick for a camera to catch his movement. However, my body was worse than my 85 years old grandma, who at least could walk around her house. I was bedridden. I felt like my body and mind were two different entities, my mind was Jet Lee, and my body was a corpse. Still, I was conscious, so, I could do something about my situation. In this case, my personality type A helped but I had to rewire my all-inner settings and do exactly the opposite of what I used to do like pushing to the limits. For me it was the hardest thing in the world, however, if you are a ‘couch potato’ then this illness might not affect you that much, you could have the best excuse to simply do nothing. For me, it was the worst possible torture. Especially because ME/CFS affected my mental abilities. I used to study for hours while managing children and life. However, at that stage, I was able to read 10 min daily max. Still, I did online yoga and reiki courses, which along with CBT and meditation with mantras helped me to rewire my settings.
At some point in my healing, I went to Tenerife. I was meditating under palms and doing Yoga on the beach. I enjoyed the ocean view, the crashing waves, no tv, just nature, I was syncing my body, mind, and myself with nature. Thus, environment and climate matter. Recently, my daughter said, ‘this trip done you well’. I did not cure 100% but I got better. Still, managing CFS is a full-time job. In the morning you check your energy level, then you plan and adjust accordingly to that, sometimes, you must stop everything and rest to avoid a crash. It is a physical and mental challenge to avoid pushing and crashing.
First, help yourself
Although I cannot commit to a job, I manage chores, yoga, and writing. While bedridden I was unable to answer a text message. I was isolated, still, I used ME/CFS to heal my soul, ease my mind, and activate my body. I learnt that to help others first I must help myself. I am thankful to the highest power for the guidance and ask for more assistance in my inner work. I wish you good luck in your own path from hell to life.
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