Chronic Fatigue Syndrome – it’s not just about feeling tired!
When most people think of me they think of perhaps the colour purple – my favourite colour and my branding, they might think of cats, I’ve got 5 after all they normally come up somewhere along the line, shoes perhaps, I’m well known for my footwear!
But here is something you probably don’t know about me – for many years I struggled with Chronic Fatigue Syndrome sometimes known as M.E
Pretty much overnight I went from someone who ran twice a week, swam twice a week, did yoga every day, worked hard, played hard, to someone who was struggling to put one foot in front of the other and string a sentence together.
It was winter, 8 years ago. I got a virus and I just never seemed to recover.
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 struggline, 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 relevent 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 absoutely 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 week 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, fibromyealigia, 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.
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 is suddenly going to 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 might 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.
And 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.
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 look out 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 your due to meet that you’re running late.
And of course, no one wants to admit they havn’t got the most up to date phone, that they are still using a phone that is 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 don’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 lunch time, or even just to get washed and dressed. I had no idea when that energy would suddenly leave me, 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 half way through a meeting, when I’d just arrived at a get together with friends, or mid-way 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 me job properly? To drive myself home?
And 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 become 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 forget things, I found it difficult to stick to a schedule.
I started to feel stupid and unreliable. I couldn’t do any of the things I would normally have taken for granted.
And in order to preserve that precious energy I started to “turn off” things that might drain it. So 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 way side, my world started to shrink.
I didn’t go anywhere without a stash of quick energy releasing food. I was always on the look out for a reason to stop and have some food. And when I did eat I could feel the battery level on my energy go back up, but I also started to 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, that something everyone else seems to have so effortlessly is so difficult for you.
And I couldn’t explain it anyway, every time I trie to, I just ended up realising that no one else understands.
That is what CFS feels like. Every single day.
And it 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).
So that is what life was like with CFS. But what is life like now?
People often ask me whether I’m truly recovered. Is recovery actually possible. Well anyone how knows me now, who see’s me bouncing around full of energy would reply “yes, recovery must be possible!”. But of course it’s not as simple as that.
The problem with something like CFS is that it doesn’t come out of nowhere. CFS is less of a condition and more of an outcome – it’s what you get 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 it does this via a vast array of biochemical responses. In order to do so it needs to have a functioning adrendal system which regulates 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, situations that are hopefully few and far between. But when you have a constant level of stress and anxiety your adrenal system is constantly producing cortisol and it literally gets burnt out. And you are left with a permanently compromised adrenal system which struggles then to manage all the other biochemical responses that regulate your body leading to all sorts of issues for example 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 yet another hormone regulated by your adrenal system.
But, 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 my system 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 who 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 with it before. So coffee, sugar, gluten, diary, 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 home cooked, 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 in order to maintain that balance then it can probably manage the fall out 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 try 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.
And 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.
And I now my training and my experience help me to work with people, just like I was, to re-energise them; to re-connect 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 in Peterborough, Northamptonshire, Cambridgeshire, Leicestershire, Devon and Kent.
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