The other day a twitter user asked what phrases or descriptions people use to describe the patches where they are more symptomatic - Flare up? Exacerbation? Aggravation?
It got me thinking about what I do and why, so I thought I'd blog my answer.
(Please note that this is personal to me, my situation, my conditions, etc. Everyone will have their own approach that works for them - which will probably change over time - mine certainly has)
'Flare up' is a pretty common term in the hypermobile community. Symptoms flare up - leaving the individual incapacitated, or at least less able than usual.
When my symptoms worsen, there's almost always an identifiable cause (even if it takes me a while to work out what). To me, 'Flare up' as a term feels like it doesn't fit this 'cause and effect' thing so I don’t tend to use it.
Usually my way of describing times when I am more symptomatic is one of the following three:
Symptom descriptions (literal or metaphorical):
- “My pelvis is particularly shouty”
- “Can’t think or walk straight, but within my normal”
- "There's a horse sat on my chest"
A comment to give context to an otherwise vague statement:
- As expected, given how much I’ve been doing this week
- Pretty rough, but not bad given *whatever factor has caused predictable symptom worsening*
Description of the coping mechanisms I need to activate:
- It’s a recharging day (when recovering from overdoing stuff)
- It’s a sofa day (when things beyond my control are messing with symptoms in a predictable way – e.g. hormones, weather, insomnia, illness)
- 'No talking today'
- 'seriously no standing today' or
- 'I'll have to take it slow for the next week at least'
In answering this, I realised that my favourite approach is using a description of what I need to do to manage symptoms.
I think this might be because:
- By using phrases which focus on what I’m doing to help myself, I feel more in control (my symptoms are not dictating my life, I am taking steps to manage my symptoms).
- I am less likely to have to navigate an 'extreme pity' response.
- By using practical illustrations, I let people know the effect of the aggravated symptoms. This helps the listener to understand what might or might not be helpful, and reduces the frequency of unhelpful suggestions.
- I don’t like focusing on symptoms. They are present, and shape my life, but it’s nice not to have to talk about them in detail with everyone.