Chronic Fatigue Syndrome - Living With Permanent Exhaustion

Understanding Chronic Fatigue Syndrome

Until relatively recently, Chronic Fatigue Syndrome (commonly also referred to as ME) was not a recognised medical condition. While, some schools of thought considered it to be symptomatic of a virus. New research is now suggesting that it may occur as a result of intestinal permeability, or leaky gut syndrome. But sadly to date, the condition is still not well understood, and as yet, there is no actual treatment for it.

What is known about Chronic Fatigue Syndrome is that it is an autoimmune condition, triggered by certain events / circumstances, which when occurring in a certain sequence, seem to trigger the condition; and when it gets triggered, there seems to be no way of reversing it. In other words, the immune system responds to a set of sequential events by setting off a response that results in the condition known as chronic fatigue syndrome.

The typical events that appear to set off this kind of autoimmune response are severe traumatic experiences like bereavement, extensive, prolonged lack of sleep, long-term depression, serious illness or physical trauma, and / or other such extreme events. When a combination of some, or all, of these occur in a certain sequence, the immune system seems to trigger this response. But to date, medical science is still trying to figure out the exact mechanism in order to try and develop a treatment for it.

What is Chronic Fatigue Syndrome?

The condition affects different people in different ways, with greater or lesser severity. But often there are common symptoms – acute physical exhaustion, severe headaches, pain in the joints and limbs (especially in the legs) dry, aching eyes, mental fog, inability to concentrate, and / or extreme weakness. All put together, chronic fatigue can become quite crippling.

Living with chronic fatigue can mean a constant, daily battle against many or all of the above symptoms. And many things we often take for granted like going to work, having a social life, coping with household chores, maintaining a routine, or even washing and grooming ourselves can become excruciatingly difficult and overwhelming.

In the absence of any real treatment, having such a condition can be extremely difficult to cope with. The only help available is antidepressant drugs, or support programmes such as CBT (cognitive behavioural therapy) which often leave much to be desired, thus offering limited help to sufferers.

This is my story, and the events in my life that possibly contributed to the onset of chronic fatigue syndrome, the impact it has had on my life over the years, and how I have tried to deal with it since…

When it Started Affecting Me

I’m not quite sure when it actually started, but chronic fatigue has affected every aspect of my life since it set in. Looking back on it now, I feel I’m probably quite a textbook case of someone who develops chronic fatigue syndrome. I had always suffered from severe sleep problems and thus frequently felt excruciatingly tired, even as a small child. My Mother would have to pull me out of bed for school, while all I wanted to do was to keep sleeping.

And then, while I was still still very young, I experienced the indescribable emotional trauma of childhood bereavement when my sister and I lost our Mother to cancer. Although being children, we weren’t actually told about the cancer until the very end (and she fought it bravely, carrying on with every day life as normally as she could) the stress of her declining health took its toll on all of us. Her illness and subsequent death totally devasted us as a family.

Life was extremely difficult after that for several years, and I think it is during those times that the chronic fatigue first started, and then just became progressively worse as time went on. I remember as a teenager being exhausted. However, I thought it was normal, and that all the people around me had extremely high levels of willpower. They went on outings at the weekends, took part in evening activities, played sports and so on, while I battled against the exhaustion… It never occurred to me that I was the one with very high levels of willpower for constantly pushing myself against the perpetual fatigue, not they – they were just ‘normal’ folk!

The Conditions that Set off the Trigger

In my case, by the time I reached double figures, two of the conditions that are attributed to the onset of chronic fatigue – the perpetual exhaustion from a lack of sleep that I had always suffered from, and the severe emotional stress due to the death of my Mother – had been met. Furthermore, over the initial few years that followed her death, I also developed anorexia and the physical stress on my body as a result of that, along with the sleep deprivation and gruelling exercise routine that I enforced upon myself daily, all added to the process.

I was also studying very hard at the time, and working part-time in the mornings, and soon thereafter as a result of everything that I was putting myself through, I had a complete breakdown. Thus by the time I reached my twenties, I had experienced so much emotional trauma, put myself through so much physical stress, that it seems unsurprising I developed chronic fatigue syndrome shortly thereafter.

By the time I went to college and started my degree, I had also become terribly run down (long-term anorexia had destroyed my gut lining rendering it unable to absorb much nourishment) and even though I was no longer anorexic and ate normally, I was for all intents and purposes, starving. This may well in itself have resulted the chronic fatigue due to intestinal permeability.

When it all Crashed Down

My immune system had been stretched to the limits by a never-ending lack of sleep, lack of nourishment, and emotional stress, that within a few months of starting college, I came down with a bug – just a run-of-the-mill seasonal bug… Only by the time I managed to shrug if off – a year and a half later – I was practically on my death-bed. But desperate to graduate on time, I carried on anyway.

My bad health cost me the degree I wanted, and dashed my career expectations. It affected me very deeply, and the enormous sense of disappointment I felt over it probably contributed its share to the chronic fatigue that developed not so long thereafter.

Still, I started work, initially taking on shift work in an entertainment company; but it totally exhausted me, to the point that I’d fall asleep walking. I had to give it up, and soon after went into teaching. However I couldn’t find a full-time teaching job, so I took up a number of part-time positions; along with several tuitions that I gave in the evenings. I’d leave very early in the morning and not return ’till late into the night. A few years after that, my health failed completely… I had developed chronic fatigue syndrome.

Crumbling Expectations

I started collapsing and fainting – suddenly without warning, I’d find myself in a heap on the floor. I thought it was just general fatigue, my usual lack of sleep causing too much physical stress, a day to day thing – nothing that couldn’t be ‘fixed’ by sleeping in late over the weekends. But little by little, no matter how much sleeping in I did, I felt completely exhausted.

From the time I got up to the time I went to bed – it was constant, total mental and physical exhaustion… My head felt like it would burst open, the pain in my eyes was unbearable, I couldn’t think, I couldn’t concentrate, I couldn’t move, and sometimes I couldn’t even speak. All I wanted to do was lie down and shut my eyes and sleep… But I was too tired to sleep and so it went on.

I had to give up work. I was no longer able to haul myself up in the mornings to go. I simply didn’t have the strength to do it any longer… I couldn’t believe what was happening to me – how could my health have let me down in such a fashion so early on in my career? Unable to accept it, I started looking for other opportunities, office administration work which wouldn’t be too demanding, but within a couple of years, I just couldn’t get up to do anything, not for work, nor for leisure. I’d drag myself up late in the afternoons but all I could do for the rest of the day was barely stop myself from collapsing.

Living or Just Existing?

Over the next few years that followed, dreading the unbearable fatigue I had experienced when I worked full-time, I gave up a few great career opportunities, which I regret to this day. I lived my life, just waiting for when I could cope again, taking up sporadic part-time work, as and whenever I could. But eventually even that became too much for me, and I couldn’t work at all. I had no mental or physical strength left.

I didn’t go out anywhere, I turned down invitations from friends, my mental and emotional health plummeted, and little by little, life became just a focus on trying to get by from one moment to the next, a non-stop struggle against the permanent, debilitating exhaustion. My life had been totally ruined by the chronic fatigue.

The days, and the weeks, and the months turned into years… My life was just a constant struggle against the fatigue. Being able to cope with everyday ‘normal’ activities like getting washed and changed, trying to get up, trying to sleep, was all just a perpetual battle to ‘survive’. The end all and be all of my life became just survival, to try and cope in the face of the devastating, overpowering fatigue.

Life Becomes Survival

On some days moving was difficult, eating and drinking was difficult… Every action I made, from lifting a hand to reach for a glass of water, to standing up in order to go to the toilet, demanded a conscious, willful mental command. And then an all monumental physical effort to act.

Heavens only knows how many times I sat in a chair, but not being able to move. My situation had become a terrible vicious circle. I got up exhausted and as the day progressed I would become even more exhausted. By the time night came, I would be so tired that I simply couldn’t rest. Often I’d end up slumped sitting where I was all night – just too tired to get up to go upstairs to bed.

And then even if I managed to get myself up to bed, my mind and body were usually so overly stressed that ‘restful’ sleep was almost impossible. I would simply lie in bed all night, with a thumping, splitting headache, falling in and out of short spells of delirious ‘unawareness’, interrupted by sleep aponia, sleep paralysis, or just plain, simple nightmares caused by the extreme mental and physical stress. And thus it went on, day after day, after day, after day…

The Disillusionment

I could no longer look after myself and went to stay with my sister. I remember one day, lying on her sofa in her drawing room. The door to the dining room was open and I could see the sun was pouring in through the dining room window, and from there, coming into the drawing room, a few inches away from the sofa where I lay. I craned my neck so as to be able to look into the beautiful, golden light. It was warm and glorious. I looked at it for a while and then shut my eyes, all I wanted to do was sleep…

I remember thinking as I drifted off – it sure won’t be my employers holding my hand when I am lying on my death-bed… What on earth have I sacrificed myself for? I have no job, no money, no energy, no strength to do anything anymore, not even any will left to try… I had come face to face with my worst fear – not being able to work. That day, in my sister’s drawing room, as I fell asleep looking at the sunlight, something happened to me – my whole life’s priorities changed. My health had given way, and there was nothing I could do about it; no matter how hard I tried – I could no longer fight the exhaustion…

Hitting Rock Bottom

The following two years got me to a point where I couldn’t even lift my head. I’d lie in bed, too tired to think. little by little whatever quality of life I had had slipped by. Some days I was so exhausted I couldn’t even breathe! I’d remain motionless, almost frozen, knowing that I needed a breath, but my muscles wouldn’t move. Eventually, the build up carbon dioxide in my body would force a reaction and I would heave a breath with my mouth, and then collapse back into my stupor.

Soon my life just became about trying to survive… My kidneys suffered, as I couldn’t get up to go for a wee; my teeth suffered as I didn’t have the strength to brush them (I had solid, perfect teeth up until that point) I lost two of my molars as a result from an infection. My eyesight suffered as the unbearable depression compelled me, no matter what, to lie or sit directly facing the sun; I believe this was probably due to the terrible depression I suffered from, as sunlight triggers the production of serotonin, the body’s natural antidepressant.

At Last Some Respite

Chronic fatigue had turned my life into and unbearable existence. I had gone from doctor to therapist, to psychiatrist, to herbalist, and back to doctor. I had tests, and went for therapies, tried homeopathic remedies, energy drinks, healing exercises, meditation, yoga breathing, innumerable supplements, and so on… I read a huge amount of literature on the subject of chronic fatigue and related topics and finally came to the following conclusion…

Like all auto-immune conditions there is no, one single solution to chronic fatigue. As a result, there is no, one single therapy or ‘treatment’ that can be considered the ‘right’ approach to the problem. The answer is to find a combination of treatments and remedies that works. And since each of us is different, each sufferer has to experiment with the different possible solutions and discover for him / herself what works best.

However, for me finally after years of shame and despair at my pitiful existence, I have managed at least to come to terms with my situation, and that in itself is a huge help. Emotional wellbeing has a big impact on our autoimmune system. I have got a primary care practitioner who is sympathetic and tries to help me, something that I am extremely grateful for. And I have finally also found a combination of supplements, vitamins and minerals, diet regime and a short half-hour or so, exercise routine that has helped me enormously.

Vitamins, Supplements and Diet

I found taking extra vitamins and minerals like iron, calcium and magnesium, as supplements, also helped boost my energy levels considerably. Furthermore, certain enzymes that have helped me, these include NADH, and co-enzyme Q-10, they are associated with the transfer of energy on the cellular level. Supplements such as gingko biloba, butchers broom, horse chestnut, vine leaf and bilberries, that improve circulation have also helped me; higher circulation helps raise the amount of oxygen reaching the cells in the body and therefore, helps increase energy levels.

I also gave up dairy, which made a huge difference for me. And in a way, that doesn’t really surprise me, given that Mother Nature’s fine tuned system designed us to be weaned off dairy after babyhood! However, I discovered that many of the dairy alternatives available contain high levels of gluten, which can worsen chronic fatigue, as gluten has been associated with causing inflammation, which affects the autoimmune system. In recent studies it has been associated with a number of autoimmune disorders including arthritis, fibromyalgia, and even multiple sclerosis. Likewise with sugars, both natural and refined.

I have also stopped eating plants from the nightshade family, these include tomatoes, aubergines and potatoes as they contain certain substances called alkaloids which have been shown to have adverse affects on people who suffer from autoimmune disorders. I didn’t think it would be easy for me to give these, up as as potatoes were practically my staple diet, but to be honest, I’m surprised how easy it has been so far at least, and I haven’t missed them at all!

The other thing that I recently learned, which I am currently exploring is reducing plant lectins. These have been associated with chronic fatigue in recent times. Lectins are found mostly in the husks, skins and seeds of plants, and occur in varying concentration in different species. They are Mother Nature’s pesticides, and help prevent the plant from being eaten. However, sprouting or soaking over night, removing the husks, and / or cooking at high temperatures, in particular boiling in a pressure cooker reduces their concentrations considerably, as lectins are water soluble. Plants with particularly high concentrations of lectins include cucumbers, soya beans, kidney beans, edamame beans, legumes, sunflower seeds and melon seeds.

Exercise and Energy

I had always exercised from an early age, but because of the chronic fatigue, for years it became impossible for me; often even moving was impossibly difficult, let alone exercise. But I knew that to try and raise my energy levels I had to raise my metabolism. So I decided that I would start with very simple cardiovascular exercise, as it increases circulation and hence oxygen levels in the body. At first though, I could barely move, so I started literally just moving my legs as vigorously as possible while still lying in bed. Little by little I was able to exercise standing up. I concentrated on leg exercises, since the muscles in the legs are the most powerful and hence they would be the most efficient at helping with the increase of blood flow.

It was a lot of stop-and-start at first, but I carried on as best I could. Slowly I was able to add some back and shoulder exercises, and eventually arm exercises too. I chose simple exercises that would be fun to do, so that I could stick with them, and not skip any days when I felt too tired. Since exercise triggers the production of enzymes in the body that aid in the healing and repair of damaged cells and tissues, I had to ensure I would continue with my routine. Slowly I added other types of exercises based on my old routine, these included general keep fit, yoga, Pilates and ballet warm-ups, as long as they were fun and relatively easy to do. Since then, I have hardly missed any sessions, and I enjoy doing them every day.

Looking for a Solution

One of the most important things I discovered in my journey looking for answers and a way to solve my predicament, is that we can heal ourselves – from the inside out. And often when it seems there is no solution, it is merely that modern medicine has not found a substance that can alleviate a certain set of symptoms, which does not mean there is no solution for the problem. There are solutions – we just have to find something that works for us, and this often involves several different approaches – this could be a combination of say alternate medicine techniques like yoga, acupuncture, meditation, as well as more conventional options like cognitive behavioural therapy (CBT), as well as vitamins and supplements and aerobic style exercises.

If you suffer from chronic fatigue or any other type of autoimmune condition and feel that any of the things I have mentioned, may help you with some of the issues affecting you, please discuss it with your doctor, or other medical expert. It may well be worth exploring the possibility that a controlled diet, with an exercise plan, yoga or other alternative therapy, produces noticeable benefits for you. For me, it’s been a question of trial and error, and that may well be the case for you. But I hope that if nothing else, perhaps some of the information I have shared here with you gives you some ideas, and some hope.

Ultimately, all I can say is – even if you don’t completely overcome all of the problems – there are many things that you can try that do help. In the meantime, if you feel you would to contact me, please feel free to do so – just send me an email through the contact page – I am always here to lend a sympathetic ear to anyone who wants to reach out to me.

So, ’till next time, keep well. With much love,

Dana x