Wonky Warbler

Pain. You make me choose today or tomorrow.  Pain. To function tomorrow, today I must pace  each step,  each stair,  each standing moment. Pain.  You make me choose my job or my family.  Say no to my big boy  as he struggles with a new piece  or holds his bow wrong  or just wants to find the right piece of Lego.  Say no to my little boy who misses being carried who has lost his favourite helicopter  who just wants to play a game.  Fail to send a birthday card Fail to do the dishes Fail to be grateful for the sunshine Fail to enjoy small boy moments  when they deserve so much more  when it will make their day  when it may have made mine But would certainly break my tomorrow.

The lovely team on the HMSA’s ( www.hypermobility.org ) Facebook page has a weekly post, #SelfCareSunday, which I flicked past and admired for several months. As well as discussing pacing techniques and pain management, there are often pictures of crocheted blankets or knitted hats that are part of the self-care ethos. I tried to do some knitting a year ago but my wrists, fingers and thumbs couldn’t cope, and I was extremely apprehensive about trying something else if it might have an even worse effect. Given that most of my ‘self-care’ activities have been made extremely painful (playing the piano, going for a walk, colouring, to name a few), I felt quite negative about it all, but kept the search for a gentle activity on the back burner. I was also getting more and more frustrated with my failure to get to grips with mindfulness and relaxation, not least because my usual deep breaths - carefully honed during years of voice training - were severely compromised by rib pain.  Give...

They say that it’s okay not to be okay. I wish it were genuinely true - except... I’m not sure it is. Or at least I’m not sure that we are anywhere near that statement actually been true enough for us to feel safe and confident in expressing it whenever we need to. Why else would writing an honest blog be so difficult? Or  managing relationships with colleagues at work? Or trusting medical professionals to believe you and take you seriously? If it were actually okay not to be okay then... we wouldn’t have to write it as a hashtag at the end of a mental health post we  wouldn’t feel like part of a  special club when others acknowledged it we wouldn’t have to remind each other about it, or  justify it   we wouldn’t pretend that we were better than we are and hide when we can't pretend we wouldn’t EVER bow to social convention and say that we were okay The fact is, I’ve found that not everything wrong with us is always okay to talk a...

After being bowled over by the kindness of friends' responses to my first blog post yesterday, I completely forgot to introduce my non-me-centred NY resolution. My lovely friend Adele, who runs the fabulous  http://nestanddressed.co.uk , is taking on the challenge of sustainable fashion for 2019, and is encouraging us to Buy Nothing New for 2019. This is in response to the rise of fast fashion, and it seems like the perfect focus for me to take on. Sustainability: Introducing the #NoNew19 Shopping Challenge I don't want to spend my year thinking all about myself - that was not the point of beginning a blog at all. I would much rather get myself to the point where I don't want to think about me at all... if that makes any sense?! Given that I have two little sponges at home (one aged 5, one aged 7), I think that some discussions about sustainability would be extremely beneficial for them. We already talk quite a bit about recycling - indeed, the smaller one ran for the S...

You lose a lot of things when chronic illness hits. Many of them are tangible - the ability to walk for any distance, or without aids, for example, feature fairly high up my list. So does housework and cooking (sounds great, doesn't it, until the frustration of being a drain on your own family really starts to hit home), not to mention silly things like being able to put on, and take off, your own shoes and socks. I’ve also lost a lot of words - brain fog can, quite frighteningly, remove a sophisticated vocabulary and quite literally overshadow thought and function. But I am not starting a blog to grumble about the countless things that I can't do at the moment - or at least, that isn't my reason for putting myself out here today. The loss that I am grieving for turns out to be much more abstract - my place in this world. My place in friendships and relationships. At work, at play, at rest. In the mundane as well as the extraordinary. Even, and this seems a ridiculous t...