Categories
CFS Mental Health

Have you heard of CFS?

Dear Friends,

Here comes a lengthy ramble that I have wanted to share for a long time, but have been putting off actually penning. This topic is very important to me, and I would be thrilled if you would spare some time to read.

I suffer with a handful of disorders which together form a nasty combination. It’s debilitating at the worst of times and frustrating at the best. Depression and anxiety are quite common mental health issues, and are becoming much more widely accepted, understood and de-stigmatised. I do not take the growing acceptance of these illnesses for granted, I feel more supported now than I used to, and I hope that this trend follows for more stigmatised mental illnesses such as personality disorders and addictions. However, my depression and anxiety are topped off by another illness that is not so widely discussed, a psychosomatic condition that affects both my body and mind: Myalgic Encephalomyelitis (M.E.), also known as Chronic Fatigue Syndrome.

I am not the only one who suffers with CFS, and I do not wish to insinuate this by any means. But the thing is, I see almost no representation or discourse surrounding this illness anywhere. I know almost nobody else who suffers with it and I had not even heard of it before my diagnosis. Most people I talk to have never heard about it either. I do not resent that CFS is so little known – information is somewhat lacking. I’m also aware that it is one of many chronic illnesses, and is often not the most grave and far-reaching. However, it can be grave, it can be painful, and it does debilitate millions of people. As such, I want to offer at least a few words to share my experience and hopefully raise awareness amongst my friends and family.

Even for medical professionals, CFS is shrouded in mystery. There is no definitive cause of the illness; knowledge of how exactly it physically and mentally manifests itself is limited; and treatment exists only to the extent of ‘managing’ CFS rather than curing it. It is no wonder, then, that the layperson often has no idea what CFS is at all. When I first started to experience abnormal bouts of tiredness, dizziness, and extreme grogginess, my family and I were pretty clueless. I had recently been diagnosed as clinically depressed, so a lack of motivation and some extent of fatigue were not out of place. However, while medication and therapy saw a great improvement in my mood and outlook, my tiredness remained.

I would like to note, here, that I think there’s a difference between tiredness, sleepiness, grogginess and exhaustion in a mental or physical sense. You may be tired in the sense that you feel drained of energy, but not sleepy in the sense that your body is lethargic and your eyelids are heavy. You may have enough energy for the day, yet, for one reason or another, your brain is cloudy and you feel groggy. You may have worked hard physically and your body is exhausted, you may have been through a period of intellectual or emotional intensity and you are mentally exhausted. These are all different sensations. But the fatigue you feel with CFS, I believe, is all of these at once. It is difficult to explain how it’s different from what an average person might feel at some point most days, but I think the difference lies here. It is all these types of fatigue, all rolled into one. Anyway, I may use ‘tired’, ‘sleepy’, ‘fatigued’ etc interchangeably, but I am referring to the unique experience that is CFS.

So, when this fatigue did not lift with my mood, my family and I were puzzled. Fatigue does not really suit my natural personality, even though in recent years I have become a notorious napper. But beneath the heavy weight of fatigue, I have energy in bucket loads. I am spirited, I am consumed by child-like wonder about the world and all it contains. I live to learn, experience and explore. To explore physically: to scour every corner of our strange planet, inhale the deep and verdant scent of a forest on a Sunday country walk, feel the soft touch of the tide beckoning me on a sunny day by the sea, take a stroll in familiar suburbs by sunset or explore foreign lands by thumbing down lifts or flying far way. To explore culturally: read every book I can lay my hands on and absorb every beautiful story, poem, sentence, word; listen to every song and enjoy every note; go to the theatre and ballets and art galleries. To explore myself: spend more time working out what I enjoy, practicing things I am good at and things I am not. I have long been struck with an overpowering gratitude that we have the opportunity to do all of these things; to just live and experience all that’s on offer. And I used to be able to act on it to my heart’s content: to learn and read and run around and dance and sing and write and paint and go,

go,

go –

STOP.

CFS hit me like a tonne of bricks following a turbulent year of mental illness. This is one of the noted predecessors of CFS, among some physical illnesses/viruses. And, in such stark contrast to my general attitude, it was immediately noticeable. My parents noticed it, wondering why I spent every spare moment sleeping, wondering why my after-school naps became so long and deep that often could not even be roused to eat. And of course I noticed it, frustrated that no matter how much I slept, each time I awoke, in the morning or from a daytime nap, I felt ill with sleep deprivation.

It was a long time before I was diagnosed CFS. In fact, despite regularly meeting doctors and professionals for various issues, it was months before this elusive condition was even mentioned. Only by some chance encounter with a locum doctor did I come across its name. After a little research, it seemed that we might be onto something. But then came an even lengthier and more tedious process. Due to its mysterious nature, CFS is pretty much diagnosed by ruling out every other possible cause of intense fatigue. And so begun months of testing: waiting for blood samples to be collected, waiting for them to be analysed, waiting for the results, waiting till the results reached the CFS specialists. About a year and a half after my symptoms began, I was referred to a CFS clinic. And even more months after that, I was able to visit said clinic.

It’s a good 3 years later now and I am sad to say that my CFS is still as prominent as ever. Forgive me for whining but I really want people to be aware of the impacts of this illness and I would like to detail them. I sleep a lot. I sleep all night and sometimes all day. Sometimes I sleep all day for several days if the days before that were particularly active. And active for me may not be active for you. I don’t have to be exercising or exerting myself to wear myself out. I can be reading, writing, sitting and chatting. Harder tasks include tidying, washing up, popping to the shops. Some people with CFS are much worse than me, I still have a relatively normal life and even attend university. But the laughably low contact hours for my course are all that I can manage on my very best week, with napping every other hour of the day. CFS is debilitating. And, having long passed the one-year mark of the illness, I am legally disabled.

There are numerous effects of CFS. When I first noticed it affecting my memory and general brain function, I was heartbroken. One day, about a year ago on a trip home from uni, I found myself crying as I stood lost in the same streets of Manchester that I had navigated with ease for so many years, suddenly bewildered by the imposing landscape before me. I have always been alert, perceptive and observant, and keen to cling on to these qualities. To find my brain suddenly groggy and slow, my mind fogged with some cumbersome smog, was sickening. A poisonous tar was dragging every cog in my head to a slow halt. Polluted.

Often this illness is defeating. Most of the time I have to let it win, because if I try to fight what my body is telling me, tell myself that I can do exactly what any of my peers are doing, I will pay for it. We talk about ‘payback’ time with CFS. If I overexert myself, I will be paying for it for days. This, of course, is worse when you’re denying the illness. And for a very long time, I accepted its name as a mere add-on to a list of personal traits, but never accepted what it truly meant to be living with and battling CFS every day.

I want people to know of this battle that sufferers of invisible illnesses face. It is hard to acknowledge that we are suffering ourselves, even if the impacts weigh heavy every day. We have to remind ourselves that we have reason to feel this way. It’s a conflict: one minute wondering whether it’s a ‘real’ illness and the next hopelessly succumbing to its suffocating grasp. There are people who are worse off, there are people who are really ill, how can I complain? But at the same time, the pain and exhaustion of being chronically ill leaves us begging for an ounce of sympathy and understanding. It is a perpetual contradiction. It is permanently testing.

And what makes it even worse, is other people denying our plight. When the little internal voice of doubt and criticism is embodied by some misinformed and ignorant commentator. These people, those who voice doubt or criticism towards the invisibly ill, seem to think their comments are original and valuable, as if they are not the very same sentiments that have plagued our own minds for years. What if you’re not even ill, what if you’re just tired like everyone else? We all get tired. Please spare these thoughts, I have already spent too long entertaining them.

There is no need to doubt these illnesses, because nobody would choose to have them. There is absolutely nothing enjoyable about feeling bed-ridden at least half of the time. There is nothing enjoyable about declining invitations for fear of the ‘payback’ time; about every university assignment taking me 3 times as long as it would otherwise; about not being able to concentrate or stay awake long enough to watch my favourite film; about feeling so exhausted sometimes that I find myself unable to move or speak, so I lie there letting people believe I am sleeping, while I am still very much conscious and longing to join in conversation.

I wanted to write all this down so that people know about CFS, so people know of my struggle and the struggle that so many others are likely facing. I know that my experience has made me more aware and sympathetic of invisible illnesses, and indeed any battles a person may be fighting behind closed doors. I ask you, too, to be understanding and patient, as best as you can be, because disabled or not, we could all use a little more kindness.

Love, Tilly

Photographs by Rosalind Wigley (instagram: @photosbyrosalind)

Advertisement

By Matilda

Hello! My name is Tilly (Matilda) and I am a 21-year-old student at the University of Sheffield, studying Politics and Philosophy. My blog is heavily influenced by these subjects, as well as by the arts in a larger sense. I enjoy making and consuming art - whether that be drawing, painting, poetry, or film.

My creations are from the perspective of a #spoonie. My invisible illness is ME/CFS, and I sometimes write about that too.

2 replies on “Have you heard of CFS?”

Congratulations on your new blog and such a well written post to get it off the ground. You have explained CFS very well and I hope that this is useful, enlightening and possibly comforting for lots of people who might have friends or family affected by CFS or suffer with it themselves. X

Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s