Trouble noticing (and managing) my symptom levels.

I am not always very good at this. I know the theory, but that's always easier than actually doing it!

I get too focused on what I'm doing so I don't notice symptoms - even if they are quite obviously getting in the way! I can even be so busy coping with pain that I don't think to actually do anything about it. I forget to step back and ask myself what I actually need to do now. The answer could be 'stop', 'move', 'take meds', 'cool down' or 'eat' -or a huge range of things.  I can practically guarantee that the answer will not be 'carry on ignoring it all' even thought that is my default approach.

I suspect there's a subconscious dose of the highly unhelpful "if I don't try and push through, then I'm not trying hard enough" and "I've had symptoms worse than this before, so just keep going otherwise you are making a fuss" in there somewhere. 

Over time I have got better at double checking. For example I've learned that if the left side of my face goes numb I NEED to lie down immediately - no excuses. And that whenever I think "Come ON! Focus!" I've trained myself to make my next thought "If I'm struggling to focus, do I need to manage symptoms before continuing?".

This week I have found another thing that helps. Our new reversible 'Now is' wristbands

Close up of person with their hand in their pocket, wearing a wide red wristband that says "Now is tough, but it will improve"

They were designed to help communicate symptom level to the people around us - so we can be understood and supported without symptoms becoming a constant topic of conversation. However, I was having a rough day when they arrived and decided to wear one - despite the fact I was on my own.

I found it reminded me to check in with my symptoms, and to manage them.

I would catch site of the orange band and find myself thinking "Oh yes, I'm quite symptomatic today. Am I still at amber, or should it really be red now? Should I be doing this task? What do I need to do to look after myself? Are my expectations reasonable given I'm at amber?" 

2cm wide silicone wristband. Red outside with text "Now is tough, but things will improve." Inside orange with text "Now is not too bad, but I need to be careful".

It was as if the visible reminder that "I need to be careful" made it OK to actually be careful and look after myself. It also made me notice sooner when symptoms had escalated and I was struggling - needing to flip to "Now is tough". There were times when I couldn't instantly take the break I needed, but just flipping the band over to red took the pressure off - helped me stop stressing for not doing what I felt I 'should' be doing, or for being slow, or struggling with words - or any of the other mass of things that happen when symptoms are playing up. It helped me change my thinking from "Why are you being so feeble??" to "Your symptoms are playing up, so take it slow and have reasonable expectations of yourself".

I've worn it several days since then and have found it useful. It is now a standard part of my 'fragile day plans'.

Trouble noticing (and managing) my symptom levels.