The fatigue demon

Tired, exhausted, shattered, fatigued, drained, sleepy, drowsy, weary, worn out, sapped, spent, pooped…knackered! These are just a selection of words describing the feeling we all experience, when we have reached our energy limit and need to rest. However, none of these words aptly describe chronic fatigue or the feeling of doing absolutely nothing, yet not having even an iota of strength in your body.

I’ve now been plagued by chronic fatigue for 12 years. I’m not talking about the CFS that is now the modern term for the condition ME (which I’ll add I don’t believe should be called CFS. Those with M.E would add it is much more). I am talking about the fatigue that accompanies a varied range of chronic illnesses and is a debilitating side effect all of its own.

What if I told you that I literally sat drinking tea at my support group Thurs morning (The Sheppey Ostomy Group, Kent) spoke with members and did little more. Then I came home to rest on the sofa whilst my son played on the tablet…yet I felt as though I’d not slept for a week, had ran marathons by day and danced in clubs by night! I could say I felt as though I’d never seen the backs of my eyelids, like I’ve worked a 60 hour week without a break, like I’ve got 15 kids to look after, like I should have achieved so much.. .yet I’d done nothing! No matter how hard or how much I attempt to describe chronic fatigue, I know that those who do not live this nightmare will NEVER get it. All the time you have your own tiredness, you’ll will never truly be able to put yourself in the shoes of someone with severe fatigue. This is because you already have your own assumptions and tiredness to compare.

I could describe many things that sound exhausting to those who do not suffer with chronic fatigue, yet I know that none of these do it justice. I feel that maybe words which spawn much deeper emotion & anguish, would fair better than the dictionaries terms for fatigue. What if I told you that chronic fatigue is torture, it’s agonising, it’s misery, it’s a living nightmare, much like seeing your life dangled in front of your face and watching it go up in flames! It’s like chasing your true self but never catching up. An endless vortex of isolation, fog, confusion, trying to reach the person you know you are but being denied by an invisible demon that you’ll never defeat.

There are ancient tales and beliefs about the feeling we now know as sleep paralysis, whereby a hag, demon or ghostly figure would enter your room and sit on your chest, stiffling your ability to breathe or move. The hag would prevent movement but the demon was slightly more evil. This demon would often be depicted as a succubus (female form) or incubus (male form) and some might attempt to sexually abuse the sleeper and literally suck the life from the victim. As extreme as it sounds, this is how I see chronic fatigue and even sleep itself. Fatigue prevents me moving, breathing freely and rapes my life of the joy I could be experiencing. It renders me paralysed and vulnerable. I also experience sleep paralysis itself; often. This may be a side effect of the palliative level pain relief I am on, or because I am often so fatigued yet too wired to shut off. When sleep does come, it can be full of vivid dreams and often the experience of being paralysed during an activity. Whether I be awake or asleep, I feel tortured of late.

The Nightmare by Henry Fuseli. This painting is a wonderful depiction, maybe even an allegorical representation of the feeling of sleep paralysis. For more info on this interesting topic, read here.

http://www.tate.org.uk/whats-on/tate-britain/exhibition/gothic-nightmares-fuseli-blake-and-romantic-imagination/gothic

My body and the body of those with severe autoimmune conditions, spend their days in conflict with themselves. I used to think that my immune system was broken, dysfunctional yet it is in fact over functional. It does it’s job that little bit too well. Here is a description of A.I conditions. Some less debilitating than others.

http://www.webmd.com/a-to-z-guides/autoimmune-diseases

If you are unfortunate to have more than one, you will be even more troubled by the effects. I personally have both Inflammatory Arthritis and Inflammatory Bowel Disease. I had my Colon and Rectum removed in 2015, after 10 horrible years dealing with the effects of Ulcerative Colitis. Although I have had my large bowel removed, I still experience the extra manifestations of the disease and they are also mimicked by the Psoriatic Arthritis. Psoriatic Arthritis isn’t to be mistaken with the skin condition Psoriasis. Although those with Psoriasis can develop PsA, it is a condition in it’s own right and can have long term destructive effects on your joints.

Of all the effects experienced from having these conditions, I would say chronic fatigue is the one you never truly learn to manage. I won’t say it detracts from the destruction and severity of the others but it is by far the one that steals the biggest part of me. You can medicate pain to loosen it’s grip, you can treat the inflammation of the disease in the hope of easing it or inducing remission, you can receive supplements or infusions for deficiencies caused by the disease(s) and although these efforts are not always successful, they are at least something. With chronic fatigue, there is nothing.

I could sleep for a day, week, month and it wouldn’t change a thing. I could adjust my diet and be the greenest, veganist, paleoist, gluten freeist (sorry making words up!) person alive, yet it wouldn’t change a thing. I could practice mindfulness, try snake oils, talk to a God…NOTHING would change things. These things may serve my mental health but not eradicate this kind of fatigue.

Now some may and will likely question me, but I must stress that what appears to work for one person will not work for another. I am also talking from experience and have tried many variations of diet, I have had many supplements, infusions, snake oils and I feel like I sleep my life away; yet nothing changes. I can go from spending a whole day out with my family enjoying the wonderful life I have, yet crash at any moment. That moment will always chip another part of my spirit away. In that moment I know that no matter what I try, I WILL go down and I will STAY down until my body decides otherwise.

It is the process of my immune system attacking my body, that triggers the fatigue. It is incredibly exhausting fighting yourself day in, day out. Here is an illustration I’ve always found amusing…

Some refer to their fatigue in terms of spoons. The ‘Spoon Theory’ was created by Christine Miserandino and has been adopted globally, as a metaphor for our energy levels with chronic fatigue/illness. I myself have used this many times, to explain why I can or cannot make an arranged event or appointment. Those with chronic illness often find that they begin the day with less or minus spoons, in comparison to someone healthy. This representation also allows us to manage our fatigue and work out how many spoons we have and when best to use them. For a full description, visit Christine’s page here.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Illustration by Colitis Ninja of someone desperate for spoons but fatigue or illness is holding them back. http://www.colitisninja.com

In summary I would like to say that although my life is blighted by chronic fatigue, it is also more enriched with gratitude and a sense of ‘Carpe Diem’ – or seize the day to those who don’t know. I have learned that I cannot prevent nor stop my fatigue, so in turn I do not waste my time fighting it. I have learned to stop justifying myself to others and do what is right for my body and mind. The activity or appointment I may cancel, can be rescheduled. Anything outside of my health or family can wait. I have an appreciation of the good days and a real grasp on priorities. So for anyone new to chronic illness or chronic fatigue, this would be my advice to you…rest when you need to, sleep when you want to, rearrange when you can and apologise never!

Shell 💋