Tuesday, 18 October 2011

Capacity and capability: or making hay while the sun shines...

I've been a bit quiet lately.  Not, thankfully, because I have been more unwell than usual, but because I have been rather better than at any point this year - and I've been making the most of it!

In this part of the world, we've been enjoying some glorious warm and sunny Autumn weather in recent weeks, which has helped a great deal.  More importantly, though, I think the Hydroxychloroquine (Plaquenil), which I started taking back at the end of June, has really kicked in and I am actually getting some energy back.  Just look at the change on my health chart over the last few months:

I am now reasonably functional (scoring 3 or more) most of the time.  I no longer need an afternoon nap to get through the day.  I no longer cease functioning at 8pm and have no option but to crawl off to bed.  I have evenings again.  And I actually have a degree of physical and mental energy that allows me to plan stuff and do things.

I started small.  I arranged to have my sewing machine serviced, and finally made up some dolls' bedding I intended to make for my daughter's last birthday, and then for last Christmas, but somehow never had the energy, the dexterity, and the time to finish. I've also almost finished a pinafore dress for her that I bought the materials for when she was a baby. The pattern only goes up to a 3 year old size, so I thought I'd better crack on with it!  I got out my knitting needles and knocked up a pair of fingerless gloves (loving those now it's a bit chillier!) - the first time in two years I've been able to contemplate doing something that involved sustained repetitive fine movements like that.  I'd forgotten how good this kind of creative activity is for the soul, and these small projects have given me a disproportionate sense of achievement.

I've also been getting back on top of my domestic situation.  Slowly and steadily, I've cleaned up and sold off some baby equipment that we no longer need.  I've also sorted out and sold the high heels I can no longer wear.  With the proceeds, I bought a secondhand dishwasher and microwave.  This again is something I have needed and intended to do for a long time.  They are making a huge difference to me, and anyone who didn't know the backstory would be bemused by how much pleasure and relief organising this small thing has brought me.

I'm still pacing myself.  I set aside a whole week in order to prepare for and celebrate my daughter's 3rd birthday and come out the other side intact.  But another measure of how things have improved is that I'm actually planning celebrations for my own birthday this coming weekend. Nothing too extravagant, just lunch out at a nice local restaurant with my family, followed by casual afternoon drinks with friends - but not that long ago, I couldn't even have faced thinking about planning anything, and my ideal celebration would have been an extra nap in the daytime, and an early night.

Most significantly, though, I'm going back into employment.  I was offered the job I recently wrote  about applying for, and I'll be starting work in November.  It's a part-time position, but it will involve commuting again, and will inevitably offer me less flexibility in how I manage my time than I have been used to - but I'm more confident than I have been at any point this year, that I will be able to manage.  I'm going to have to be careful not to get too excited and go off the blocks too fast, and also to remember to look after myself, but I'm over the moon at having the opportunity to do this.

The best thing about all of this is that it has begun to restore my confidence in me.  The fact that I have (finally) found a medication that can make such a dramatic difference for me, proves to me that it was my physical illness that was responsible for my inability to function  - not that I'd somehow suddenly lost my strength of mind or character, or my fundamental ability to organise myself and do what was necessary, whether on the work or the domestic front.  A good friend summed it up very nicely when she said, 'It's not about capability, it's about capacity'.  It wasn't that I was fundamentally useless or incapable of  doing any of these things, just that I was not in a position to get on and do them at a given point in time (albeit a point that lasted for many months).

I doubt I would have found it particularly easy to see or believe that back in the Spring, when I was very unwell.  But I would hope that when (and it's probably a 'when', rather than an 'if') my health next takes a downturn, I will at least have a bit more perspective and a bit more hope that things will not be like that forever.

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