‘This isn’t living. It’s merely surviving.’ I was totally bed-bound. I was a shadow of the person I used to be.’: Woman with Chronic Fatigue Syndrome says ‘I appreciate every single second’

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Trigger Warning: This story contains mention of eating disorders and sexual abuse that may be triggering to some.

“I was so happy, almost the happiest I had been in a very long time. I had moved countries the year before, from the Sultanate of Oman (where I had been for 8 years) to Azerbaijan, to be close to my mom, my best friend, and to get out of a very toxic relationship. I had a wonderful Year 1 class I was teaching full-time, I got promoted to Key Stage 1 coordinator, met the love of my life, and had just come back from an incredible summer holiday with my best friend and family, filled with adventure and lots of activity like climbing mountains, waterfalls, swimming, exploring and even going on a hot air balloon. Unfortunately, this feeling did not last for very long.

Courtesy of Sarah Dreyer

Once I arrived back home from the airport, I walked into my apartment and looked up at the ceiling. The kitchen and my bedroom were full of black mold. The apartment above me had had a leak and my locked apartment had been damp and sitting in the summer heat with no ventilation. I immediately got hold of the school I was working for and told them about the issue. I was brushed off and told it would be sorted out. Weeks later and after a lot of harassment from me, the caretakers came and ‘cleaned’ it up by sticking wallpaper over it and painting over the mold. I carried on asking them to move me into another apartment but I was not being taken seriously and eventually gave up.

Courtesy of Sarah Dreyer

After 2 months, I noticed my health started declining dramatically. I was not able to be as active as I was used to be and every time I went to gym after work, I would end up with cold or flu-like symptoms. This got progressively worse, but I still kept on trying to push through because I did not understand what was going on with my body. I went to the doctors a few times but I was told I was just depressed, even though I was not feeling that way at the time. The decline of my health carried on to the point where I was not able to sleep at all in the evenings, my heart rate was always high, I felt super wired and stressed continuously for no reason, and often could not physically get out of bed. I was only able to work 4 days a week and had to have a rest over the weekends and one other day during the week, otherwise I could not stand up for longer than 2 minutes.

While I was desperately searching for answers and going for even more blood tests, my mom came across an illness called Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). I read the symptoms and even though I had every single one of them, I did not want to believe this was what I had. ME/CFS is considered a lifelong, neurological, debilitating condition that affects all of your functions. I did not want to believe I had ME/CFS because of its severity and one of the only ways to manage it is stopping most, if not all, of your activity, even working full time.

Courtesy of Sarah Dreyer

While I was stuck at home feeling very sorry for myself, not being able to do much, I noticed my past traumatic experiences from childhood started to come to the forefront of my thoughts. I believe this was because I was not able to distract myself with exercise, being busy, travel, going out, etc. which was what I had been doing all those years. I was left alone with my thoughts because I did not have the energy to do anything else. I would call my partner who lived in the UK every evening and just cry until I had no more energy left. When my mom and my best friend came over to see me, I was not able to talk with them for very long because of the fatigue. Eventually, I decided to finish the academic year and move to England to be with my partner and my sisters, as well as to find a less stressful job.

Courtesy of Sarah Dreyer

After a few months in England, my health declined even further. I was now collapsing at the bottom of the stairs at home after coming back from a short 3-hour shift at work and was unable to walk up the stairs. Sadly, it did not stop there. The decline continued, I started not being able to lift my arms to drink something and ‘crashed’ after even the smallest amount of activity like showering. Towards the end of a long 2-year struggle, I was totally bed bound. I was unable to stand up, walk on my own, dress, or bathe myself. I could not talk, but could only slowly whisper for a short period of time. I was also unable to watch television or listen to music because of the light and sound sensitivities related to the CFS.

During all this, I was still not able to sleep at night because of the amount of adrenaline that was being released into my body. I was going back and forth from the doctors’ offices, which was adding to the ‘post-exertional malaise,’ a term describing the ‘payback’ you suffer from after physical activity.

Courtesy of Sarah Dreyer

It took a year before I finally received my official diagnosis of ME/CFS. I tried everything to ease and manage the symptoms, such as light and sound hypnotherapy, clean eating, supplements, meditation, and cognitive behavioral therapy, but nothing worked. I remember lying in bed, unable to do anything but just lie there and thought, ‘This is not living at all, this is merely surviving from one day to the next. How is this fair? Time is going by and I am unable to live even the simplistic of lives.’

I cannot explain to you the devastation I felt losing everything, and how traumatic it is to not be able to ask someone to help you up and to get you to the toilet because you literally cannot even talk let alone move. It seemed as if every single thing I once loved was taken away from me. I would avoid looking in the mirror because I did not recognize the person staring back at me. I felt like a shadow of the fit, active person I used to be. I felt like a burden to everyone around me and it absolutely killed me to not be able to talk to the people I love.

Courtesy of Sarah Dreyer

CFS can be caused by having a viral infection (post-viral fatigue) but in my case, it was from toxic exposure to the black mold, physically pushing my body too hard for too long, emotional stress, and childhood trauma. All these things cause your body to be in a physical emergency response or fight or flight mode and the CFS occurs when this becomes the default. This then channels your energy to the wrong things and leaves nothing else for normal body functions. Some symptoms include heart palpitations, slow and sluggish digestion, extreme muscle weakness, insomnia, extreme brain fog, light and sound sensitivity, forgetfulness, muscle pain and twitches, pain in the lymph nodes in the neck, slow and irregular breathing, weakened immune system, post-exertional malaise (crashing after activity) and long-standing debilitating fatigue.

Looking back at what I used to put my body through before I got ill deeply saddens me. I was so hard on myself and had unrealistic expectations. My focus was on my appearance more than it was on my health. I now understand I had a very bad body image, which was the result of years of sexual abuse when I was a child. This caused me to have an unhealthy relationship with exercise and food. I developed an eating disorder and constantly distracted myself from healing emotionally by always being busy and choosing to be with someone who continued the abuse and who I tried to ‘fix’ instead of fixing myself. Once I had lost the ability to run away from the deep emotional issues, I was forced to deal with them.

Courtesy of Sarah Dreyer

Luckily, during the time I was ill, I had an amazing support system and constant love and care from my family and partner. He was there for me, emotionally and physically, every single step of the way, and I would not have been able to have survived it if it was not for him. He would make my meals, comfort, and support me and try and make me smile every day, even if he was exhausted after coming home from work. He bathed me, brushed my hair, cleaned my teeth, and even had to take me to the toilet during my worst months. I feel so blessed to have such an incredible person in my life.

Courtesy of Sarah Dreyer

After months of research and trying everything I could, I came across something called The Lightning Process, a training course that uses neuroscience and the mind-body connection to influence your neuropathways to rewire themselves and give you your health back. At first, I was skeptical of this and thought it was too good to be true, but out of sheer desperation, I gave it a try. Within the first day of the 3-day seminar, after the 6-hour training, I was able to make my own meals and go for a short walk. On the second day, I started to feel like myself again and went to visit a friend and then went for an even longer walk. After the last seminar day, my partner and I moved our bedroom around (for a fresh new start) and we had a barbecue, with family over. That night, I danced in my bedroom and cried with complete joy and happiness. I got my life back! Everything felt incredible and it was like being born again. I could only dream about being able to jump on a trampoline when I was ill but now it was a reality.

Courtesy of Sarah Dreyer

The Lightning Process does, however, require you to put in the work they recommend until your neuropathways have changed through neuroplasticity and the growth and reorganization of your neural networks is automatic and permanent. For me, this was very quick but I still carried on using the process for a while and I still use it for other aspects of my life. It is a lifelong tool you can use whenever you feel something is holding you back: anxiety, depression, or in my case, bad body image, and low self-esteem. I want to share my story to give hope to those out there who have been diagnosed with this horrific chronic illness and say you can heal. Recovery is possible and there is hope.

Courtesy of Sarah Dreyer

I would not wish this illness on anyone and I still feel a bit traumatized about the whole experience but at the end of the day, it was such a blessing for me. I can now say I am truly, deeply happy, and I appreciate every single second of every single day. Chronic illness allowed me to have the opportunity to totally heal every aspect of my life and I am grateful for this new lease on life. I now focus on being kind, loving, and gentle to my body and do not take anything for granted. It’s now been 6 months of having my life back and I could not be happier.”

Courtesy of Sarah Dreyer

This story was submitted to Love What Matters by Sarah Dreyer from Surrey, UK. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from the chronic illness community:

‘We’re letting you go.’ I was too sick to work. They bullied me for months and couldn’t handle my illness.’: Woman fights for mystery illness diagnosis, ‘I am chronically strong’

‘So she’ll always be sick?’ I leave the office with an answer but no cure. ‘I’m not dying. I’m just 16 and past my prime.’: Chronic illness warrior battles lupus and fibromyalgia

‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle

‘My doctor said, ‘It’s just part of being a woman. You have a lower pain tolerance.’ I was nicknamed ‘drama queen.’: Young woman diagnosed with endometriosis after 7 years of pain

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