Slow progress is still Progress

I have spent too much time stuck in bed or on the sofa and needing to rest. It is not easy to truly understand unless you have personal experience of how it feels but when I need to rest that makes even having a conversation an impossibility. This naturally makes relationships with others more strained because I become very isolated and seemingly anti-social.

My family have seen me at my worst and while they really do try to be understanding how can they when they see me looking well?

Some auto-immune diseases have an unfortunate effect of giving you a healthy ‘glow’ when you are feeling horrific so it is not surprising that many people are disbelieving. Aside from that lovely glow it is not easy to understand what activities I can do and what will use too many spoons so it looks like I am choosing to not participate.

I suppose I am making the choice but not because I do not want to join in but because if I do it will force me into the space where I am basically a lump lying in bed and unable to even have a conversation or get myself to the bathroom. Trust me when I say it is not fun to be dependant on someone else helping you to use the toilet.

If I would like to go out then I need to ensure I have a full rest the day before and the day after. If I push myself and use too many spoons my energy reserves become depleted and I am basically the lump I described.

Last year I ended up getting the balance wrong and had zero spoons left- it has taken a huge amount of time to rebuild a reserve because simple things like eating or reading or having a conversation all take more spoons than you would expect. I can now eat (most of the time) and interact with others though I do still have to limit myself otherwise I run the risk of depletion again.

How on earth can someone who sees me looking well and chatting easily understand that the extra spoons required to get ready and go out is not possible? Or that I was out one day but then resting in bed and not doing much of anything the following day is necessary – after all I was fine the day before.

I’ll break it down into a day:

  • getting out of bed: 1-3 spoons
  • using the toilet: 1 – 2 spoons
  • getting out of pyjamas: 1 – 2 spoons
  • getting into day clothes: 1 – 3 spoons [depending on what I wear]
  • brushing my teeth and the usual hygiene tasks: 1 – 3 spoons
  • getting down the stairs: 2 – 4 spoons
  • having a conversation: at least 3 spoons [depends on with whom, about what and the length of time]
  • eating: 3 – 5 spoons [depends on what I am eating]
  • using the toilet: 1 – 2 spoons
  • getting up the stairs: 2 – 4 spoons
  • brushing my teeth and the usual hygiene tasks not including a shower: 1 – 2 spoons
  • using the toilet: 1 – 2 spoons
  • getting out of day clothes: 1 – 3 spoons
  • having a shower: 6 – 8 spoons
  • getting pyjamas on: 1 – 2 spoons

The more tired I am the more spoons I need to complete a task.

I have not had that many spoons to use in one day in a depressingly long time- and that was eating once, using the toilet three times and having one conversation.

But, progress is progress and I welcome it with open arms – I now have a small store of spoons and while I do have to be very careful I am no longer the lump lying in bed.

Just in case you missed the links to explain the spoon theory:

2 thoughts on “Slow progress is still Progress”

  1. You don’t need to explain yourself, you need to look after yourself and only you know what you are able to do, we all pick a choose in life, we all juggle and we all prioritize what is important to us. It is so hard having to use up so much energy (spoons) for things we all take for granted, but you are the most amazing mum I have ever met and you are so engaged with your family. If anyone can work out the balance, it will be you. XXX


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