What is ‘normal’ when you have a chronic illness?

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Normal. A word that has both positive and negative connotations depending on the context in which it is uttered; tone of voice, inflections of the word, the choice of words used in that utterance, the theme of the conversation…

So when people say to you ‘ I hope you start to feel normal soon’, what does that actually mean?

On reflection the person saying it hopes that you will begin feel more like yourself soon. For anyone who doesn’t have a chronic illness, it can simply mean feeling less tired or more energetic or happier.

For someone with a chronic illness the real significance of ‘normal’ no longer truly exists in their vocabulary. Instead, ‘normal’ is a past existence, a distant memory that we can vaguely remember if we are lucky. The word has a new host of subtleties that vary depending on the weather, season, what we’ve eaten or drunk and what we did the day before or even the previous week.

Personally, my ‘normal’ happens when I’ve been within the same range on my fatigue and pain scale for a few days or perhaps a week. This ‘normal’ could be a 7 where I feel constantly exhausted and in pain with sudden peaks and troughs to break this ‘normality’. Conversely it could mean I’m feeling particularly energetic and less fatigued without needing to take regular breaks whilst still able to carry out my daily routine (which is nothing like it was pre-CFS/ME. The latter is how I’ve been living for the last few weeks. There’s been dips but on the whole this has become habitual for me.

But is this my ‘normal’ now? I wish I could say yes but sadly I cannot. I have to carefully consider when I do what, how it will affect me and by how much. Otherwise I’ll feel worse for a few days. How this will manifest, I won’t know until it starts. Generally it’s increased muscular pain, increased fatigue, forgetfulness and regular or constant ear and head aches. But the severity of the above on the scale will differ depending on what has caused the worsening of symptoms; I may experience constant ear aches, increased fatigue and intermittent headaches. It might not be a full blown flare which is ideal. I try to remain as close to my routine as my symptoms allow but often I need to adapt to ensure a quicker recovery.

So, the term has a new, slightly skewed meaning which has an altogether different meaning for each one of us. When someone wishes me better health, I am thankful because they care and genuinely want me to get better. I’m grateful to those around me who try by reading as much as they can on it or adapting plans so we can still meet up and do something. Yet they cannot relate to how I am feeling because unless you suffer from CFS/ME, you cannot truly understand how it feels. There are a whole host of blogs and articles out there about the subject and each one identifies with each other in terms of symptoms, anxieties and dilemmas shared yet they also differ greatly in what ‘normal’ life means to each individual living with CFS/ME.

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