Disease Patterns

When I was first diagnosed with Adult Onset Still’s Disease I had little knowledge of auto-immune/inflammatory conditions. Evidently, as I lay on my back in hospital my mind was consumed with questions! How long will this last, will I ever get better, how will this impact my day to day life, what went wrong?

Because Still’s is so rare, finding good quality, accessible information about Still’s over the past four years has been really hard. A lot of the available literature is overwhelming and often quite clinical in nature. So, I wanted to try and do something about that. Over the next six months I am going to endeavour to collate the information I have found useful and try and make it more accessible to us, the patients. Please note that I do not have a medical background, other than having been sick, and the purpose of these posts are to provide you with information that you can speak to your specialists about or do your own further research. They are generalised in nature. However, if you think I’ve misunderstood anything, please let me know. I want to ensure this content is as accurate as possible.

One of the first questions I want to address is disease patterns. From the literature I have reviewed it seems that there are three typical patterns. The first pattern is monocyclic, or put simply you have one major flare and then go into remission. The second pattern, the pattern I seem to be following, is polycyclic. You fluctuate between periods of high disease activity and remission. The number and frequency of cycles I imagine is unique to each individual and their exposure to triggers. The third cycle, and the most devastating, is the chronic pattern. People experiencing this pattern of disease activity may fluctuate in the severity of their symptoms but they never enter a remission state. People with chronic Still’s also appear to have higher joint involvement (arthritis leading to joint deterioration).

Chronic fatigue

Chronic fatigue is a common, but often misunderstood, symptom of many chronic health conditions. Unlike tiredness, which can often be resolved quickly through a change in routine and rest, fatigue is a persistent heaviness that affects your energy levels, concentration, ability to sleep and mental health for an extended period of time.

When my disease activity is high this is what each day feels like. I can really struggle to explain how I am feeling to others, but I hope this illustration will either help you understand or explain to other what living with chronic fatigue is like.

Spoon Theory

The Spoon Theory is a concept I came across when I first became sick in 2016. It used by people with chronic fatigue to help articulate their daily experience and also to help them explain to others what living with chronic fatigue is like.

There are a few different versions but the basic principle is the same.

Each day you receive up to 12 spoons.

Take away 1 spoons if you slept poorly
Take away 1 spoon if you missed a meal
Take away 1 spoon if you missed or are tapering a medication
Take away 1 spoon if you are stressed

With your remaining spoons, select the the tasks you’d like to complete today.

If you have chronic fatigue I hope this simple illustration will help you understand what you’re experiencing in some way and to also help you communicate your needs or limits with others.