May 12th, 2017
Today is International CFS/ME Awareness Day, and as someone who has been living with the condition for a long long time, I figured it is time I spoke about it on here.
For the most part in this post I’m going to talk about my own experiences with the condition. If you’re not up for a long read, feel free to skip reading this. If you think you’ll find this post helpful, grab a brew, because you’re about to hear my life story.
In a nutshell, Chronic Fatigue Syndrome is exactly what it sounds like. Perpetual exhaustion, which isn’t relieved by sleep. So I am literally that permanently exhausted pigeon meme.
You can read more about the condition on the NHS website here, but I’ve had all of the above, and experience a combination on a daily basis. It’s a right laugh. But for the past few years it has been at a stage I consider extremely manageable. But it wasn’t always that way!
I was diagnosed with Chronic Fatigue Syndrome by my GP in April 2013, just over four years ago when I was at my wits end. I hadn’t been feeling right since high school. HIGH SCHOOL. I left high school in 2006, so… a long time prior to that.
While I was in the midst of my GCSEs I got a virus, and essentially never really recovered. My doctor and I had the theory that some of the elements that may have contributed to me developing CFS were:
Of course, we can never know for sure, but at that age those sorts of things put a huge strain on you, both mentally and physically. So it was a tough time.
I remember not being able to switch off whatsoever and lying awake all night, then not being able to drag myself out of bed until school was either almost about to finish, or already over. Some days I would go into school at 4pm because the art block stayed open and work on my art coursework. Some days I’d make it in to school, some days I’d turn up half way through the day, and some days I just wouldn’t show and I’d pretty much stay in bed.
What started with me being off sick with a virus turned into me having not very great attendance, but I did want to try hard, and it never got so bad that the school took any action, luckily.
My English teacher knew I had potential because I was one of the top in my class, or at least that’s the reason I assume she really helped with getting the right help I needed from both the school and my doctor at the time.
I’m not thick by any means, and I rallied and nailed my exams and my coursework and left high school with A’s, B’s and C’s in my GCSEs which I am proud of to this day.
After that I was done with education for many reasons. I did try sixth form but dropped out very early on to just get a part time job working in a cafe. I got on with my life and just slept a lot. That’s trivialising it a little bit, but that’s the gist of what I did.
I remember saying to my friends “it’s so weird, but I’ve had a sore throat since high school, I can’t remember a time when it hasn’t hurt”.
Fast forward to 2013, when I was in the full swing of my career having been employed consistently since I left school, and I’m holding down a full time office job for the NHS, and through sheer determination and the fact that my career is very important to me I’m coping. Just about coping.
I am finding it hard to concentrate, I’m feeling like I struggle to stay awake during the day, and everything hurts. Just full body aching, like after you’ve done a really tough workout, except this was when I wasn’t exercising whatsoever (more on that another day).
The most frustrating thing of all is that everyone else is achieving so much. I work with nurses who work hard for long hours, then go home and have families and go to the gym. My friends all have full time jobs and do loads of fun stuff in the evenings. I just go to bed.
I’ve always been a hard worker, but I was feeling seriously inadequate. And you know, physically absolutely awful. So off to the doctor I went.
The doctor who I saw was wonderful. You know those doctors who really care about their patients? She was one of those. I remember sitting in the waiting room, 45 minutes after my appointment time and thinking “I’m not even mad, this is a really good sign… I know full well doctors only get a ten minute appointment slot per patient”.
She really listened to me when I basically described to her the full list of symptoms I’d written in the notes of my phone prior to my appointment. I made a note of everything in the weeks leading up to the appointment because especially when you’re suffering from brain fog it’s easy to forget or struggle to think of what you want to say and how you want to say it, and it is so important that whoever you see gets the full picture.
It’s easy for a GP who is running behind already and under extreme pressure to zone in on one symptom and fob you off. It’s also sadly the case that some GPs just don’t really care that much. Most do, and I have the utmost love and respect for healthcare workers in general, but there are definitely some exceptions.
So she booked me in for a whole host of tests. All the blood tests, urine tests, etc that they could do. To diagnose CFS you have to basically rule out anything else it could be, so this is part of the process. I actually had to repeat the tests because they forgot about me. These things do happen, so if you’re suffering you have to chase if this happens to you. Things don’t get passed along, or entered in the system properly all the time. It sucks but it happens.
I got my letter saying I was going to be referred to the CFS/ME specialist service in May 2013. I finally got a letter confirming my appointment in November 2014. Just a casual year and a half later…
Treatment for CFS on the NHS at present is cognitive behavioral therapy, so my first session was booked for December 2014 and I was to go fortnightly.
The thing is, who gets diagnosed with a chronic illness that they’re going to have to live with for the rest of their lives, and in the year and a half following that does nothing? Definitely not this gal.
My approach to absolutely anything in life is to learn absolutely everything I can about it, soak up all the information going, and then find the most logical solution. That’s just my personality, I apply it to every aspect of my life, and this was no different.
From the moment I was diagnosed I was on the internet doing as much research as I possibly could into the condition.
I read about causes, and how there’s no definite officially recognised cause, and while I do think that research into the condition is needed because there will be a cause (it’s just not logical for there to be none) I am not a scientist, plus I already have the damn condition so I can’t change that. So I moved very quickly onto trying to find out how to make myself feel better.
I wanted to increase my energy levels more than anything in the world, so the first thing I did was totally overhaul my diet. I already thought I was quite healthy, but I learned about clean eating, and I went in on it hard. I cut out all processed food from my diet completely, and I basically lived off chicken, rice and loads of fruit and vegetables. I started drinking loads of green tea. I was obsessed.
And it worked. I had more energy. I think that as a blogging community we know pretty well these days that processed food is bad for us, we share these things with each other, and there’s lots of info out there. But at that time I hadn’t really given it enough thought. I thought that because I didn’t eat McDonalds every single day like my boyfriend at the time that I was healthy, when in actual fact I had lots of improving to do.
I think that any person, CFS or not, who cuts out processed carbs from their diet will learn that they have much more stable energy levels and I’m not here to lecture anybody on their diet, but for me it was a revelation, which is a little embarrassing at the age of 23.
Unfortunately, what followed this little spike of energy was me trying to do too much. When I eventually started my CBT I learned about the ‘boom and bust’ issue that many CFS sufferers experience, where on the days when you finally have some energy you try to do all of the things you haven’t been able to do. This leads to burnout, and it takes days, weeks, or months to recover again.
Eventually I figured this out for myself, and I am the sort of person who is extremely organised when it comes to my schedule and looking ahead anyway, so I started to plan my life according to rest. I learned that I could only realistically do X amount of ‘things’ in a week, and stopped trying to expect too much of myself, or worry about disappointing people. And slowly (I mean really slowly) things started leveling out. No more “well I’m free that day so I’ll fit this activity in there” and more “I’m free those four days, but I need to give myself space to do nothing, so I’ll do a thing on half of one of those days”.
Once my CBT appointments started, I was basically talked through a lot of different areas of difficulty, and given resources to help with them. The thing was, by this point I’d done so much of my own research and made so many life changes that my sessions were basically a massive ego boost. Every session we’d move onto a new topic, and I’d tell her all the things I knew or was doing in that area and she’d be pleased as punch with me and tell me I was smashing it.
I’ll be honest, by the time I was referred I felt like a CFS expert, but it was still a really valuable experience and there was lots I did learn. And psychologically, being told that you are doing well, and looking after yourself is a extremely empowering. I am no health professional, but through either instinct or exhaustive research I had effectively treated myself. There were plenty of things I’d been doing before I was even diagnosed because I just wanted to be the best version of me I could be. I looked forward to every session, and left every session glowing with pride.
And of course every time I turned up I hoped (due to my incessant thirst for knowledge) that there would be things I’d learn that I hadn’t discovered for myself, and at times there were.
Some of the areas we covered were:
This is a huge part of it. We all know we grieve the death of someone we love, but people who are diagnosed with CFS often grieve the loss of their own health, the loss of activities they enjoy, and often also the loss of relationships, whether that be partners or friends.
People with CFS lose part of their identity too sometimes, for example if you were the chief breadwinner and you can’t fill that roll anymore, or you lost a job that you felt defined you. The condition affects everybody differently, and for some people they lose their entire independence and may need both physical and financial help for the rest of their lives. It’s a lot to come to terms with.
I am extremely extremely lucky for many reasons. For a start, I am, as a person, extremely good at accepting things. I run on logic, and I don’t get lost in my emotions easily. So my perspective allows me to accept things without really becoming too upset or consumed by them. I am extremely extremely thankful for this trait. I may come across to others as a bit cold because of it, but I promise I’m actually an extremely empathetic and loving person, but I will try to help in practical ways.
Secondly, I am lucky that my CFS has never rendered me disabled. I think when I was diagnosed my condition would probably have been classified as ‘moderate’, and it is now definitely extremely ‘mild’. I think sheer determination spurs me on, and the constant desire to improve myself and my life. I’m very very stubborn.
This is not to say that people who have the condition worse than I do aren’t determined. I really in no way want this to come across as “if you try hard you could overcome it” because I know that isn’t the case. Like I say, I think I’m just lucky that it never affected me as badly as it could have.
The stress of fatigue and the frustration of the condition has the super fun result of inducing the stress response, so we tense up, our heart rate increases, our blood pressure rises, we’re unable to relax, probably irritable. I’m the most irritable person on the planet, sometimes.
During my CBT sessions I was taught lots of relaxation techniques to combat this, and how to recognise when we are tensing up and stay in control. Tensing your muscles when you’re sat about doing nothing uses more energy than being relaxed, so teaching this in our sessions was a way to conserve energy.
I was also told the importance of posture to reduce pain, and I concentrate on my posture quite alot anyway as I’ve worked in offices for so many years.
I was taught loads of breathing techniques, relaxation techniques, and so on, but the thing is, I’m naturally a pretty chill person. So the lady I was seeing was pretty happy that I was smashing it in terms of self regulating.
I might do a post on resources, if anybody would be interested, because I’m more than happy to help others out, but you’ll probably die of old age before you reach the end of this post as it is…
I spoke earlier about how I learned to schedule in rest, and how CFS sufferers experience a ‘boom and bust’ cycle. The way they explained it in my CBT sessions was to think of your energy levels as a bank account.
Your credit is the amount of energy you have for the day. To stay in credit through the day, you have to set your level of activity to match the energy you have available. If you absolutely smash a load of tasks in the morning, and then expect to have energy left over to carry on at the same rate, at some point you’ll go into the red. If you don’t stop, you’ll become more and more overdrawn, and although you may be able to carry on for a while your fatigue will compound. Then, the fun process of resting until you’ve ‘paid back’ your energy debt begins.
The thing is, I think that this is true for all humans. The difference is, us CFS folk have considerably less to play with in the first place. We are the poor, when it comes to our energy levels. And it’s the “trying to keep up with the Joneses” that really fucks us over.
The idea is to aim low. Do a little bit less than you think you’re capable of. Set a routine and stick to it and try to make sure the amount of time you need to recover is always less than 24 hours. Over time, you should find that you become capable of longer periods of activity, requiring shorter breaks.
I was given an activity diary to fill in, and as I’d already kinda been doing that for myself for while, she was pretty chuffed with my pacing efforts.
It seems a bit mad to say to somebody who is bed ridden that they can slowly increase their activity levels, but for me, personally, it really did work. And I honestly haven’t been in such a severe position that I wasn’t able to do that, so I’m really sorry if you’re reading this and that’s not a solution for you. I can’t even imagine how tough that must be.
One of the most interesting things that came up during my sessions, and something that I have found to be extremely true both before and since are that things other than sleep drain recharge our energy levels. If you suffer from CFS, you know that sleep doesn’t really refresh you anyway.
Emotionally draining events and situations drain our energy, daily tasks drain our energy, exercise drains our energy, and so do worrying thoughts.
Worrying that we haven’t done everything we need to or are supposed to. Worrying that we aren’t as much fun as we used to be. Worrying about letting people down.
It’s hard to rest when you’re thinking about all the things you feel you ought to be doing, so this makes sense. It was hammered home that when I made time for rest, I had to make sure it was actually restful. Not just sitting around worrying. Luckily this is something I’m naturally good at, I guess it goes hand in hand with the acceptance part.
Similarly, things that we enjoy, that make us happy, that relax us etc all give us more energy. Making the time to still do the things you love will actually give you energy. That’s not to say that if your favourite thing in the whole world is contact sport but you’re too unwell to do that and try it anyway you’ll be bouncing off the walls… but paying attention to the things that bring you joy that you are capable of and doing more of them is really important.
We discussed diet, and she asked me what I was eating, I told her, and she was really impressed and said I was smashing it. I told her about how much I had found it helped me, my reasons for changing my diet, and she gave me some print outs anyway just in case and we basically moved on from that.
I won’t go into too much detail about diet in this post, but I think that nutrition is something that we aren’t really taught, and educating yourself is important no matter what the state of your health.
Obviously sleep is a big issue. Going to sleep and waking up exhausted is horrendous. Sleep is such an essential part of feeling well, and not being able to sleep, or not feeling refreshed often leads to insomnia.
I was told a whole host of dos and don’ts surrounding ‘sleep hygiene’ such as:
I kinda already knew all of this at that point, though, and luckily I’d already got myself to a point where I was pretty good at sleeping. But I think it’s useful stuff to consider!
Right now, I’m still working full time at a job that I really love, and I’ve managed to have a job the whole way through this period, which I’m really happy about (give or take a month or two as I’ve changed jobs twice in that time).
I’m 100% independent, but I am surrounded by literally the best friends in the whole world, who make me happy and help to recharge that ’emotional energy’ supply I’ve learned so much about.
I’m fully aware that on any given day I have the ability to do only so many things, and I prioritise and pace accordingly.
I would say I’m lucky that my job makes me happy and therefore I am able to make that my number one priority every day, but it isn’t luck at all because I have deliberately sought out a job that really interests me and that I enjoy.
There’s no sense in allowing literally the biggest part of your life be something that makes you unhappy, so my whole life I have taken the approach of working towards fulfilling that goal. When I was in a job I didn’t love I was studying the subjects I did love in my spare time (online courses are great for people who need to pace themselves). When my old employers were treating me badly I was reaching out to new prospects. Good things come to those who hustle.
I know that I can’t cram my weekends with so many chores and activities that I’m fully caught up on everything, and I don’t give myself a hard time for it despite being a complete perfectionist.
I know that I can’t say yes to every single invitation to hang out, and that honestly neither can anybody else, and it’s fine.
I know that sometimes it’s really important to say “sorry I have to bail on our plans because to be honest I just really need to do laundry instead and I can’t do both”.
Similarly I know that sometimes it’s really important to say “you know what, it’s really important that I see my friends today, the housework will still be there next weekend”.
I know that going on a night out and staying out til a stupid time on a Saturday night is a ridiculous idea, because I’ll lose my entire Sunday and probably still be tired on Monday, so it better be a really special occasion.
I know that I don’t update my blog as often as I ‘should’ to make it successful, but that’s absolutely fine by me because I’ve never wanted it to be my job and it’s literally just my little corner of my internet to share my thoughts, experiences and interests.
I go to the gym at least once a week, but I aim for more. I don’t really do cardio, because cardio is hardio and I find that it just exhausts me with no real benefit. I do go for walks, which I love, but mostly I just do weights. I really find that this helps me immensely. When I’m stronger, I have more energy, and everyday tasks like opening doors and just generally doing stuff are easier. I’ve also always wanted to be strong, and I like achieving goals so… yeah.
Exercise is a bit of a controversial one because some people are dead against it, but it was recommended to me by the NHS, and for me it is a wonderful thing.
To be honest at the moment I’m in an incredibly good place energy wise, and I would say that I have been for a few years now. I’m really on top of things and I feel like I’m leading a completely normal life. I get shit done, I see my friends, and I live in a beautiful flat. A couple of people who I have known for a lot of years have said that they would never have guessed that I have the condition when it has casually come up, so I really do live very normally.
I don’t really go about telling people about my condition either, because I don’t feel like it’s necessary. I don’t feel like a victim whatsoever as I know that nobody is responsible for my energy levels except me, and I also know that most functioning adults pace themselves anyway. Certainly the ones that I surround myself with do, anyway. The only difference is that I need to do so a little bit more.
Another thing that has surprised me the few times I’ve spoken about it is how many people go “oh yeah my girlfriend/dad/cousin/friend has that”. I think it’s just one of those things people don’t talk about because they don’t want people to see them differently, but there are people all around us with the condition. I definitely don’t want people to see me differently, because I don’t see myself as different to anybody else. We all have areas we need to focus on more to be the best we can be, and not overdoing it just happens to be mine.
I really hope that I don’t ever end up back where I was in 2013, but I honestly don’t see that happening given all the tools I have. I’m really resilient, and life has thrown me all sorts of curve balls over the years, and I’ve always took it in my stride.
I think my main point with all of this is to shed light on the condition, but also to show it does not define you, and you can live a completely normal life. I am a naturally determined and organised person, so this has helped me immensely in terms of keeping lists and notes and staying organised, but I honestly believe that given the right tools and environment to thrive we all have the ability to do so!
If you’ve made it to the end of this mammoth of a post, first of all your participation award is in the post (seriously well done), and second of all I hope that this has perhaps helped somebody.
And lastly, I hope that for anybody who isn’t doing as great as I am that this hasn’t come across as condescending in any way, because I don’t want to come across as telling you that the reason you aren’t where I am is that you’re not trying hard enough. I know that isn’t the case. I’m not a doctor or a therapist, and while I will probably do some posts in the future on things that help me personally, I know that there are so many different levels of this bizarre and mysterious condition. But hang in there, and I’ve got your back if you ever want to talk!
And on that note, it’s 10pm on a Friday night and I’m quite happily taking myself off to bed. Laters! x