What it’s like to live with Chronic Fatigue Syndrome/ME

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.

What is Chronic Fatigue Syndrome?

In a nutshell, Chronic Fatigue Syndrome is exactly what it sounds like. Perpetual exhaustion, which isn’t relieved by sleep.

Other fun and fabulous symptoms include:

• Muscle pain
• Joint pain
• Headaches
• Brain fog (difficulty organising your thoughts, stringing a sentence together, memory problems etc)
• Sore throat
• Painful or swollen glands/lymph nodes
• Digestive issues such as IBS and nausea
• Sensitivity to light or loud noise
• Depression, irritability, anxiety, panic attacks
• Dizziness and difficulty balancing
• Excessive sweating
• Difficulty regulating body temperature
• Insomnia

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 good laugh. But for the past few years it has been at a stage I consider extremely manageable. But it wasn’t always that way!

My diagnosis

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:

• Moving from Devon to the North, and starting a completely new life
• Switching from Steiner education to a mainstream high school where the education style was completely different (that’s a discussion for another day, but it was horrendous)
• Exam stress
• Illness

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.

Where it all started

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 into 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. My English teacher really helped with getting the right help I needed from both the school and my doctor at the time. 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 is not bad, all things considered.

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 job. 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 went down.

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 was holding down a full-time office job for the NHS, and just about coping.

I was finding it hard to concentrate, struggling to stay awake during the day, and everything hurt. Just full body aching, like after you’ve done a really tough workout, except this was when I wasn’t exercising whatsoever.

The most frustrating thing of all is that everyone else was achieving so much. I worked with nurses who worked hard for long hours, then went home and have families and go to the gym. My friends all had full time jobs and did loads of fun stuff in the evenings. I just went to bed.

I’ve always been a hard worker, but I was experiencing a lot of feelings of not measuring up. And you know, physically feeling absolutely awful. So off to the doctor I went.

My referral

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. It sucks but it happens.

Making life changes

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?

From the moment I was diagnosed I was on the internet doing as much research as I possibly could into the condition.

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 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.

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 only make plans for some of those days”.

Attending CBT for chronic fatigue syndrome

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.

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 extremely empowering. I am no health professional, but through either instinct or exhaustive research I had been doing many of the right things.

Areas covered in CBT

Grief, loss, and acceptance

Loss 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 lucky that my CFS has never rendered me unable to work. I think when I was diagnosed my condition would probably have been classified as ‘moderate’, and it is now definitely extremely ‘mild’.

Relaxation

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, and we become irritable.

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 taught 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 lovely new breathing techniques and relaxation techniques, and the lady I was seeing was pretty happy that I was smashing it in terms of self-regulating.

Pacing

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.

It seems a bit far fetched to say to somebody who is bed ridden that they can slowly increase their activity levels, but for me, personally, it really did work. I personally 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.

Things that drain or recharge us

One of the most interesting things that came up during my sessions, and something that I have found to be extremely valuable to think of 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.

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.

I was taught to keep a list of the things, big or small, that give me a little boost – whether that’s enjoying a cup of tea, getting some fresh air, or reading a book.

Diet

We discussed diet, and she asked me what I was eating, and I told her about how much I had found switching up my diet had helped me and my reasons for changing it, 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.

Sleep

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:

• Going to bed at the same time every night
• Getting up at the same time every day
• Getting regular exercise
• Getting regular exposure to sunlight
• Keeping your bedroom dark and quiet
• Only using your bed for sleep or sex
• Relaxation exercises
• No caffeine too late in the day
• Not using alcohol to sleep
• Not reading or watching TV in bed
• Not going to sleep hungry (or too full)
• Not focusing on trying to sleep, and making yourself more alert
• Getting up and going to do an activity if you can’t sleep, like reading in another room if you’ve been lying awake for 20-30 minutes

Life now

Right now, I’m still working full time, and I’ve managed to work the whole way through this period, which I’m really happy about.

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’m lucky that my work makes me happy and therefore I am able to make that my number one priority every day. It definitely helps that I have pursued a career that really interests me and that I enjoy.

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 try not to 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 half the following week, so it better be a really special occasion.

I go to the gym at least once a week, but I aim for more. When I’m stronger, I have more energy, and everyday tasks like opening doors and just generally doing stuff are easier.

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 I bring it up.

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 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.

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!