My battle with Chronic Fatigue is much more than just ‘being tired’

I can’t go to school, shower or socialise regulary


Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a long-term illness that typically affects people in their 20s to mid-40s. The illness causes long-term exhaustion, limiting the most basic of everyday activities such as work, going to school, or even simply walking.

One way to provide an analogy for the illness is a non-sufferer has a certain amount of energy that they can spend each day which is replenished during sleep. However, for someone suffering from chronic fatigue, the amount of energy they can spend is far smaller, and the recovery time is much longer.

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The symptoms of Chronic Fatigue vary from case to case. Today the University of Bristol has announced that it will trial a new method of treatment called FITNET (Fatigue in Teenagers on the interNET). The process is to provide Cognitive Behavioural Therapy (CBT) to those suffering with the illness through the use of e-consultation at home. However, the treatment will not directly be a “cure” for the illness, instead it would be a way of managing the condition to attempt to reduce the effect it has on day to day experiences.

Chronic Fatigue is an issue close to my heart, as my two sisters and father have suffered from the condition. I sat down with one of my sisters to ask her some questions about her experiences with CFS.

The most effective treatment we've found so far

The most effective treatment we’ve found so far

How long has Chronic Fatigue affected you?

I got ‘slapped-cheek’ virus two days after starting year five at school when I was nine. I’m now 17, so that was eight years ago. I didn’t get better. Initially I was diagnosed with ‘post-viral fatigue’ but then I was diagnosed as Chronic Fatigue. It’s now generally referred to as ME, which I prefer as Chronic Fatigue just makes it sound like you’re tired all the time.

What can your friends do that you can’t? 

Pretty much anything that resembles a normal life. If you look at their day-to-day they could go shopping at the weekends and cram in late-night revision rather than having to think “I have no lessons today, so I’ll use my energy to have a shower”. They can go to parties and get drunk – I can’t drink, let alone have the energy to go to a party.

At least once a week when talking online with a friend they’ll say something like “I miss you, we should meet up soon”. I have to deal with the guilt and sadness of explaining that I wish we could too but I barely manage to get out of bed each morning, let alone go out for coffee with a friend. I have to deal with the emotional weight of your friends never quite seeing and understanding why you can’t do things. The emotional challenge is just as difficult as the physical.

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The #millionsmissing campaign aims to highlight the fact that CFS is an invisible illness 

What typical challenges do you face each day?

How to clean myself. Even six months ago I would have to wash simply using face-wipes. Now I can interchange that with getting up to the sink to wash. I can still only shower a maximum of once a week, on a good week, and that’s sitting on a stool. The majority of my energy in the term time goes into keeping up with my homework, which I can barely do.

Although I enjoy schoolwork, the things I’m most passionate about, such as being artistic, painting, reading, writing, photography and all of the things I’d naturally want to do has to be put on the back burner. This means that at times it’s quite difficult to keep inspired when you don’t have the projects that make you ‘you’ and excite you.

Every day I have to actively make the choice to not pursue my passions which leaves me emotionally uninspired as well.

What methods of treatment have you tried? 

I’ve been put on a diet where I couldn’t eat anything fermented, dairy, or gluten, but eventually I stopped this diet as I lost too much weight. I was then referred to the Great Ormand Street Hospital in London. Having the Great Ormand Street Hospital on a letter was useful for explaining my situation to others and school. The only real treatment was setting goals such as trying to see friends every fortnight, although aims like this are unattainable.

I’ve seen physiotherapists on and off who have given gentle stretches to try and build muscle strength, but this hasn’t had significant effect either. I’ve had various counselling and CBT to help with the side-effects, but CBT does not help with the actual physical illness.

I also have to take amitriptyline to sleep – I can’t without it. This is ironic as people just think I sleep all the time.

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How has the illness affected your education? 

I physically cannot get to school. By the time I’m there, I’d be too exhausted to work or process anything, which defeats the purpose. For years I didn’t want to leave school and become home-educated because all of my friends were there. I felt leaving school would take away any hope I had left.

I had to keep dropping subjects – by year 10 I could only do English and History for GCSE. At the start of year 11, I had to drop History halfway through the course. I was unable to go to school at all and it wasn’t until February that I was provided with a teacher who came to teach me for two hours a weekAt this point I started seriously realising that the only way to get an education was at home.

It’s worked out for the best as my online lessons have had over 80 per cent attendance for the first time since year five. I managed to get an A* in my maths GCSE last year and a B in my English AS level. This year I have started my History AS Level.  After a two hour lesson I am wiped out and can’t do any homework.

I have always loved learning and going to school, this illness has made even that a battle.