My chronic fatigue journey
Where Do We Start?
For the last few years I have been battling a variety of symptoms. They are so persistent and underlying in nature that it is difficult to identify exactly when they started or when I last felt any different. I’ve written about them many times; headaches, pain across my shoulders and neck, anxiety, depression. And all underpinned by a crippling sense of tiredness.
I had assumed it was anxiety causing the other symptoms. Or maybe depression. Then I thought perhaps it was the medication I was taking to combat those illnesses that was causing me to feel terrible and so regularly cycled off them, only to feel no better and for a bunch of other symptoms to flare up, leaving me little choice other than to cycle back on again.
It’s Not You, It’s Me
It can be difficult to explain to people exactly what the impact of these symptoms are. Go on, try it for yourself. Tell someone you feel tired and what response do you get? Have an early night, perhaps? And if you have a headache, what would you recommend? Take some paracetamol, most likely.
But what if getting more sleep doesn’t help. What if you go to sleep at 9pm, sleep the whole night through, wake up at 9am and feel no more refreshed. What if you wake up in the morning with head and body aches like you’ve been spun through the washing machine and not lying flat on your back all night. What if you wake up feeling, not refreshed and ready for the day, but exhausted, defeated before you’ve even begun. What if this happens every day, of every week, of every month.
And those headaches, that aren’t really headaches at all. Oh sure, your head literally aches. But this isn’t a traditional migraine or similar. This is a pain that starts at the back of the neck, spreads across your shoulders and creeps up the base of your skull. You try paracetamol but it makes no inroads to the pain. Ibuprofen is equally ineffective. Hot packs, baths and stretches have no effect. The only thing that works is co-codamol, but that in turn dulls your brain, making you feel even more tired, this time a tiredness of the mind even if the body remains willing.
And the symptoms don’t exist in isolation. The lack of refreshing sleep and constant underlying pain make me irritable, causing me to snap at the children, which in turn inevitably feeds a cycle of guilt and self-recrimination. At the same time my mental capacity is dulled, my head feeling like it is shrouded in fog, any thought or decision like mentally dragging my brain through treacle, my concentration span reduced virtually to nil.
Against this background, I try to be a husband. I try to be a father. I try to maintain a semblance of competency at my job. And at various times, I feel that I am failing at each.
Finally then, after years of managing the symptoms and getting by, I decided I had had enough and sought assistance from the GP. We started with a new drug, intended to block out the pain and improve sleep, but that had no effect, or at least not a positive one. We moved on to blood tests, which revealed an excess of uric acid, something associated in later life with gout, and so a new prescription found its way into my ever expanding drugs cabinet. Again, this had no effect, but it ticked off one important step. A further blood test looked for everything going and, as expected, revealed nothing.
So, what now?
During an earlier appointment, the GP had floated the possibility of a couple of potential causes. The first was something called Fibromyalgia, a condition characterised by pain across specific parts of the body. A quick Google search of common symptoms seemed to line up fairly well with my own, although there were some differences.
The second condition he raised was Chronic Fatigue Syndrome, and to be honest, on name alone, it seemed a pretty good fit. With blood tests completed, highlighted issues addressed and no other obvious causes, it was off to the Chronic Fatigue clinic I went.
So What Is Chronic Fatigue Syndrome Anyway?
Beyond the obvious characteristics defined by the name, I had no idea what Chronic Fatigue Syndrome (CFS) was. It turns out that it is another name for Myalgic Encephalomyelitis, or ME. Again, I had no understanding of this either, save for a hilarious sketch I remember Ricky Gervais doing about it on one of his stand up tours.
CFS / ME is a long-term (hence the Chronic bit) Syndrome (hence the…oh, forget it), characterised by an extreme tiredness. There is no single cause, no specific test to identify it and no catch-all treatment. Indeed the symptoms themselves are so generic and wide-ranging (tiredness, pain, headaches, flu) that it can be difficult to diagnose in the first place. Well, dang.
At my appointment, it was explained to me how the condition can develop. It tends to stem from an event, such as a virus or stress trigger. This in turn sets the fight-or-flight response into action, increasing the adrenaline levels in the body. However these levels don’t lower back to normal, effectively leaving you hyper-stimulated, leaving you prone to be affected by noise, light and pain and more susceptible to general illness. At the same time, your breathing pattern can fall out of rhythm, throwing off the oxygen / carbon dioxide balance in your system which contributes to the feeling of brain fog (a shocker in itself, being told that I can’t even breathe properly!). And taken all together, these symptoms can cause sufferers increased anxiety as they try to understand what is wrong with them and the impact that their symptoms are having on their lives and the lives of those around them.
The net result of this appointment was that the specialist I saw confirmed the diagnosis; I am suffering with CFS.
In many ways, I compare it to my experience with mental health. Like with anxiety and depression, CFS is internalised. There are few obvious, outward symptoms meaning that it is hard for others to see or understand. Sure, follow me around all day and you might see me struggling to drag myself up the stairs without bouncing off the wall for momentum, or rolling my neck to try and loosen up my shoulders, or even grabbing a catnap when the exhaustion becomes too much. But beyond that, it is ‘all in my head.’
As with mental illness though, the symptoms of CFS manifest physiologically. The pain in my neck is real. The headaches are real. The restless legs at night that cause me to thrash around for an hour or strip down in a desperate attempt to cool off are real.
I had been diagnosed with an illness. I was not being discharged from care. This is a condition I will need to learn to manage. This was then a validation. And yet still the doubts gnawed at my mind.
Asked to date the start of my symptoms, I settled on 2016, this being the date I stopped exercise regularly and piled on the weight I had lost in the 18 months prior. But was I underselling? I left the Priory in 2013 and my symptoms started years before that. I remember feeling unnaturally tired ten years ago and didn’t I pretty much have un-diagnosed depression back at Uni? What came first, depression or CFS?
Then we stepped through a ranking chart of symptoms, with 10 being the mildest and 1 the most severe The specialist suggested I was a 6, meaning my symptoms were relatively mild but left me operating at around 70-90% of full capacity and, on bad days, rendered incapable of performing my daily duties. Immediately I tried to argue my way up to a 7, downplaying my symptoms through fear that I was now over-stating. ‘You’re not ill,’ my mind said, ‘you’re just lazy.’ Thing is, I remember all the same thoughts from when I entered the Priory. ‘You’re weak, you just need to try harder, pull your socks up, get on with it.’ They were wrong then and they are wrong now.
Road To Recovery
Whilst there is no cure, that does not mean there is no hope. Symptoms can be managed, coping strategies can be employed. With time and application, I can see improvement.
Again I am reminded of my mental health experience. I entered the Priory believing that I was broken and unfixable but left understanding the power of the CBT cycle, that thoughts influence feelings, influence behaviour. Make a change, breaking the cycle, and you can begin the journey of recovery.
And so it is with CFS. My tiredness will not be addressed by an early night or a lie in. Instead I must map out my day, stick to a routine and make time for genuine moments of relaxation. My pain will never be cured by co-codamol, however much short-term relief they may provide. Instead I must look to establish a sensible, graded exercise regime, supported by mindfulness and with a focus on breathing exercises.
It may take six months. It may take up to a year. But by making changes, I can make a difference.
The journey continues, at 1066allstars.wordpress.com