How Chronic Fatigue Syndrome feels and how I overcame it
For many years I struggled with Chronic Fatigue Syndrome, sometimes known as M.E. It was winter. I got a virus and I just never seemed to recover. Pretty much overnight I went from someone who ran twice a week, swam twice a week, did yoga every day, worked hard and played hard, to someone who was struggling to put one foot in front of the other or string a sentence together.
I’ve never really talked much about it before, mostly because I found it really difficult to help people understand what I was going through. Someone would ask me how I was and I would say “Do you know what, I’m really struggling. I have CFS and right now things are just really hard”.
What would happen then, for the person listening, was that their brain would take that information and cross-reference it with all the information it has stored about their own experiences and knowledge and it would pull up the most relevant piece of information to help them process my sentence so they could see how it was relevant to them.
So what I’d hear back usually went something like this: “Tell me about it, I’m absolutely knackered. I know I’ve just come back from holiday but the flight was delayed and we didn’t get in until 3am, and then it’s just been full on at work since then and I can’t wait for the weekend when I can just have a big glass of wine and a lie-in”.
Let me just say this now. That is not what Chronic Fatigue Syndrome is like! And every time I heard a response like that it brought home to me how much people didn’t understand and that made me feel very lonely.
At the time I felt angry and annoyed at those people – but it wasn’t their fault, their brain was pulling up the only references it had that might relate. The problem lay with me – I just didn’t know how to explain what was happening to me in a way that other people could understand. Mostly because I didn’t understand it myself!
But things are different now – My training as a clinical hypnotherapist along with my own personal experiences now mean I understand how our brain works and how the brain and body interact and leave people like me struggling with a range of auto-immune or “non communicable illnesses” like CFS, Adrenal Fatigue, many thyroid issues, fibromyaligia, and not just that but the huge energy drops we get after big trauma’s in our lives like grief.
So now I feel I can explain it. And I’m going to explain it not so that people understood what it was like for me because this is no longer my experience of life. I want to explain it to you so that other people won’t feel as lonely as I did.
What is Chronic Fatigue Syndrome like?
CFS is like having an old mobile phone with a dodgy battery – it doesn’t matter how many times you plug it in, it just doesn’t hold the charge. You can leave it on charge overnight, wake up in the morning with a full 100% battery, but you have no idea how long it’s going to last and at what point it will suddenly die on you. At any minute it might drop down from 90% to 2% with no prior warning. Some days you might manage to have a few phone calls, other days all it can take is one text and your battery is dead. It’s completely unreliable and the only thing you can guarantee is that it will let you down when you most need it.
When that battery dies on you, it’s not just that you can’t make phone calls, you can’t text, send messages, check your email, the weather or the news, you can’t access your social media, you can’t use your sat nav, search the web, take a picture, read a book, watch a video, do any online shopping…. suddenly you realise all the things that you would normally use your phone for but now can’t.
How Chronic Fatigue makes you act
And so, in order to preserve that battery as long as you can, you stop looking at your Facebook feed so often, you switch off some of the apps, disconnect from bluetooth, you don’t send messages with pictures, your messages become very short and curt so that you don’t waste battery on the niceties. You find yourself constantly on the lookout for charging points, opportunities to top up your battery. You start carrying your charger and an emergency battery with you everywhere. But still you know you’re going to get left high and dry without your phone, usually at the point where you’re lost, can’t phone anyone, can’t check sat nav and can’t tell the person you’re due to meet that you’re running late.
And of course, no one wants to admit they haven’t got the most up-to-date phone, that they are still using one so out of date it can’t even charge properly. So we hide it, keep it secret, try and find ways around it so people don’t have to find out, so we don’t end up feeling embarrassed that we don’t have the basic tools people use to run their lives.
That is what Chronic Fatigue Syndrome feels like. It doesn’t seem to matter what I did, how long I slept, how much I ate, I just didn’t have any energy resources. Some mornings I might wake up feeling like I had some energy (not many!) but I had no idea if that energy would last me until the end of the day, or lunchtime, or even just to get washed and dressed. I might be at home where I could just go to bed and not have to face the world, but it might have deserted me halfway through a meeting, when I’d just arrived at a get-together with friends, or midway round the supermarket. What then? Where was the energy that would get me back home to a safe place? Where was the energy that would allow me to do my job properly? To drive myself home?
That lack of energy wasn’t just about trying to put one foot in front of the other – when that energy goes it affects everything. I couldn’t think straight. My whole brain was in a fog. It’s like thinking through porridge. Simple tasks became difficult – like which lid goes back on which pot, even though it was a task I did every day, I got it wrong every single day. I couldn’t find the right words and when I did they come out in the wrong order. My speech felt slow and slurred. I forgot things and I found it difficult to stick to a schedule.
How Chronic Fatigue makes you feel
I started to feel stupid and unreliable. I couldn’t do any of the things I would normally have taken for granted.
To preserve precious energy, I started to “turn off” things that might drain it. I said no to going out with friends or going away for the weekend. I said no to watching that movie. My hobbies fell by the wayside. My world started to shrink.
I didn’t go anywhere without a stash of quick energy-releasing food. I was always on the lookout for a reason to stop and have some food. When I did eat I could feel the battery level go back up, but I would feel it draining away again pretty quickly.
And of course, I hid it. I wanted to keep it secret.
Who wants to admit to this failing? Something everyone else seems to do effortlessly is so difficult for you.
I couldn’t explain it anyway. Every time I tried to, I just ended up realising that no one else understands. That is what CFS feels like. Every single day.
Chronic fatigue syndrome strips you of everything you recognised as “you”. All your confidence goes, you fluctuate between high anxiety (What’s wrong with me? How long will my energy last today? What if it runs out?) and depression (Not wanting to go out, not wanting to see people, feeling helpless and hopeless).
Recovering from the onset of Chronic Fatigue
People often ask me whether I’m truly recovered. Is recovery actually possible? Well, anyone how knows me now, who sees me bouncing around full of energy would reply, “yes, recovery must be possible!”. But of course it’s not as simple as that.
The adrenal system and Chronic Fatigue
CFS doesn’t really come out of nowhere. CFS is less of a condition and more of an outcome – it’s what happens after your adrenal system has taken such a battering from years of constant stress and anxiety, a big trauma or other toxic loads on your system.
Our bodies are pretty amazing. They are always aiming to return to homeostasis, that state of everything being in balance, and they do this via a vast array of biochemical responses. Our bodies need to have a functioning adrendal system to regulate those biochemical responses.
One of the roles of your adrenal system is to produce cortisol, your stress hormone, in response to fight or flight emergencies. These are situations that are hopefully few and far between. But when you have a constant level of stress and anxiety, you are constantly producing cortisol and your system literally gets burnt out. You are left with a permanently compromised adrenal system which then struggles to manage all the other biochemical responses that regulate your body. This leads to all sorts of issues, like food and skin allergies as your body struggles to deal with an additional “toxin” put into your system, or managing your blood sugar levels, as insulin is another hormone regulated by your adrenal system.
Controlling symptoms
With nicknames like “Pocket Rocket”, I’m proof that recovery is possible even with a compromised adrenal system. But I think of it more as a constant recalibration rather than recovery. I manage my condition now by giving my adrenal system as little to do as possible, eliminating all possible things that might throw my body out of balance, continually recalibrating so my adrenal system, with it’s reduced capacity, can cope with what it is being asked to do.
I reduce all “toxins” from my system – and I put these in speech marks because a toxin for my body would probably be tolerated by someone else’s body that has an adrenal system working at full capacity. My body reacts to the strangest of things and sometimes out of the blue after it’s been fine before. So coffee, sugar, gluten, dairy, beauty products, early starts, shower gels, Prosecco (I know, that’s so not fair is it!), late nights, lemons, lentils, rice… these are all things I need to either avoid completely or reduce dramatically.
If I’ve have a good week, eaten lots of homecooked, fresh foods from scratch, nothing processed, been outside a lot in the fresh air, gentle yoga exercise, no stress, plenty of good quality sleep, there hasn’t been much for my adrenal system to do to maintain that balance, so it can probably manage the fallout from a cup of coffee or a slice of cake. But if I had a full-on busy week, eating on the hop, lots of late nights, and then I decided to go to the pub for a meet up with friends and a glass of wine or two, then my compromised adrenal system wouldn’t be able to deal with all the work it had to do to bring my body back into balance, and I might crash. Thankfully, my crashes now don’t last for long and they aren’t as deep – I might need to make sure I take a Monday off after a busy weekend and that’s all it will take to recover.
So recovery is possible through continued recalibration. I’m confident now in my own recovery, in managing this continual recalibration, in my own understanding of what goes on in our body and mind to cause something like CFS.
I now use my training and my experience help me to work with people just like I was: to re-energise them; to reconnect them with who they are and what their goals might be (all that stuff that goes out the window when you’re just trying to survive every day); to understand what they need to do to recover so that they can start living their lives again; and to help them renew their lives so that it’s not just about surviving, it’s about thriving.
About the Author: Caroline Prout is based in our Thrapston clinic in rural East Northamptonshire. Caroline chose to retrain as a hypnotherapist after her own anxiety led to physical health problems and a diagnosis of Chronic Fatigue Syndrome. “One of the things that helped me the most in my recovery was understanding how our brains work and why that can have such a huge impact on our wellbeing, both physical and mental and this is something I now share with all my clients”. Using her own experiences and training Caroline specialises in helping people overcome anxiety and chronic conditions such as CFS, Fibromyalgia and other auto-immune conditions.
Get in touch with Caroline to find out how hypnotherapy could help you to overcome chronic illnesses. Caroline offers a FREE initial consultation and online appointment options.
Inspired to Change Hypnotherapists are based across the UK and are all recognised by the National Council for Hypnotherapy, the UK’s leading not-for-profit hypnotherapy professional association.
