Held hostage by our bodies

Living with a chronic illness feels like our bodies are holding us to ransom. We get no rewards for our attempts to function like a “normal” person.

We struggle with the everyday things that most people take for granted.

Managing life with a chronic illness(s) is exhausting. We experience multiple layers of fatigue. It’s important to note that fatigue is different from feeling tired.

There are 3 different types of fatigue

• Transient fatigue is acute fatigue brought on by extreme sleep restriction or extended hours awake within 1 or 2 days.
• Cumulative fatigue is fatigue brought on by repeated mild sleep restriction or extended hours awake across a series of days.
• Circadian fatigue refers to the reduced performance during nighttime hours, particularly during an individual’s “window of circadian low” (WOCL) (typically between 2:00 a.m. and 05:59 a.m.).

Fatigue is categorised as either physical or mental.

Common symptoms associated with fatigue can include:

• aching muscles
• apathy and a lack of motivation
• daytime drowsiness
• difficulty concentrating or learning new tasks
• gastrointestinal problems
• headache
• irritability
• slowed response time
• vision problems

The difference between tiredness and fatigue is more substantial than you may first realise. Tiredness is the way we feel when we don’t get enough sleep. Fatigue is a daily lack of energy that can’t be solved through greater sleep alone. Fatigue, therefore, is caused by more than just our sleeping pattern or daily activities.

Most of the time fatigue can be attributed to one or more lifestyle issues, such as poor sleep habits or lack of exercise. Fatigue can be caused by a medicine or linked to depression. Sometimes fatigue is a symptom of an illness that needs treatment.

If you feel you’re suffering from fatigue, which is an overwhelming tiredness that isn’t relieved by rest and sleep, you may have an underlying medical condition. It’s important to consult your GP for advice.

Prepare yourself not be taken seriously. It could take a few appointments and more than one doctor to be heard.

In my case, the first GP dismissed my concerns. I was there about something else. After she dealt with that issue, I told her my concern about my tiredness levels and not feeling refreshed after a good night’s sleep. Ignoring me she thrust the prescription slip into my hand. Giving me the “it’s time to leave” look.

I wasn’t at all prepared for her reaction. I left feeling like none of the doctors at the surgery would take my concerns seriously. I decided to see another GP and if they didn’t listen or help me. I would try every doctor at the practice until one of them was willing to act on my symptoms. Luckily for me, the second doctor I saw listened. A diagnosis of Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) took about a year. Once diagnosed I felt momentary relief. Finally, there was medical proof I was unwell. I wasn’t going mad, it wasn’t all in my head. I had a physical problem.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Layers of fatigue – Mille-Feuille of tiredness

This isn’t a medical term ( Miller-Feuille is French, meaning; 1000 sheets or layers) It’s something I created to help healthy people understand fatigue is much more than just tiredness. An early night and a long lie at the weekend simply won’t fix us.

Different layers of fatigue

Layer 1

Fatigue caused by chronic condition(s) Exhaustion that doesn’t let up might be a sign of:

• Adrenal insufficiency
• Amyotrophic lateral sclerosis (ALS)
• Anemia
• Anxiety disorders
• Cancer
• Chronic fatigue syndrome
• Chronic infection or inflammation
• Chronic kidney disease
• COPD
• Coronavirus disease 2019 (COVID-19)
• Depression (major depressive disorder) or other mood disorders
• Diabetes
• Fibromyalgia
• Grief
• Heart disease
• Heart failure
• Hepatitis A
• Hepatitis B
• Hepatitis C
• HIV/AIDS
• Hyperthyroidism (overactive thyroid)
• Hypothyroidism (underactive thyroid)
• Inflammatory bowel disease (IBD)
• Liver disease
• Low vitamin D
• Lupus
• Mononucleosis
• Multiple sclerosis
• Obesity
• Parkinson’s disease
• Physical or emotional abuse
• Polymyalgia rheumatica
• Pregnancy
• Rheumatoid arthritis
• Sleep apnea
• Stress
• Traumatic brain injury

Layer 2

Fatigue caused by medication. If you take time to read the patient leaflet inside the box you will find an extensive list of side effects. Fatigue is a common side effect of many drugs. Especially the types chronic illness sufferers take. Additional fatigue is the last thing we need or want.

Me and my Mille-Feuille of fatigue

Measuring using my own scale, I have the following on top of the fatigue I suffer from undertaking daily tasks like a “normal” person.

Fatigue from ME/CFS

Fatigue from FND (Functional Neurological Disorder

Fatigue from Fibromyalgia

Fatigue from Vestibular Neuronitis

Fatigue from medication

Fatigue from painsomnia

Fatigue from insomnia/lack of sleep (I am lucky if I get 2-3 hours a night)

Fatigue from working

Having found myself on the runaway medication train more than once. Currently I take very little medication. I learned that taking multiple medications aggravated my fatigue and caused me additional health problems. For example I found myself taking a medication then having to take another to treat the side effects. This resulted in taking more than 30 tablets a day. Hence the reason I call it the “runaway medication train”. You begin taking one medication and before you know it you are taking 7 or 8 different kinds. I was collecting carrier bags full of medicine every month.

It took me years and several attempts to try to find the perfect mix of medicine to treat all of my chronic conditions. I discovered that medication wasn’t the answer. It wasn’t going to work for me. It was the only treatment option NHS Orkney offered. So I took it. Many years on I don’t regret going through all that. I had to realise myself that medication wasn’t the right path for me. It’s important to note that I’m not anti-medication. I respect everyone’s right to choose what is best for them and their bodies. I’m not here to dictate what is right or wrong. I am simply sharing my experiences in the hope that it could help someone on their journey through this minefield. Or enable others to understand what we all go through.

“The Spoon Theory” is a tool used to explain how much energy (spoons) someone with a chronic illness has in one day.

Whilst I recognise it’s a both visual and logical way of explaining chronic illness. I feel that it’s not accurate. What about the large proportion of us that have no spoons to start with?

What is the spoon theory?

• A person has roughly the same amount of energy each day.
• Each unit of energy is represented by a spoon.
• Healthy people have more spoons (energy) than those with an illness that causes chronic fatigue.
• Some activities cost more spoons than others.
• A person with a fatiguing chronic illness needs to make decisions about which activities to spend their limited number of spoons (energy) on — the illness stops them doing many things they want to do.
• The chronic illness means that if the person does too much in the morning, they will not have enough spoons left for the afternoon or evening.
• The chronic illness may mean that a person can do something in the morning OR on the afternoon – but NOT both. They may seem inconsistent because their energy levels and number of spoons fluctuate.
• A healthy person does not need to plan how to spend their spoons, because they do not have an illness that limits them.

In summary chronic illness sufferers have many layers of fatigue. Not just from the illness or illnesses themselves but from the medication they take to treat it.

Using my theory, how many layers of fatigue do you have?

Sources

https://www.mayoclinic.org/symptoms/fatigue/basics/causes/sym-20050894

https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf