Why blog?

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 triviality, in social media. I have no idea how to exist as a fair representation of my current self without seeming to be self-pitying, attention-seeking, or fake. Everything I love to do has to be whittled down into moderation, drastically altered, or removed completely, and there is nothing about my life left untouched. My whole identity has been crushed so completely that I am now a stranger.

I watched a video on Facebook in which a woman described how she “had built a prison out of the word ‘fine’,” and that resonated with me so much. I have been so ashamed by my failure that I haven’t wanted to make anything more out of my situation than is immediately apparent, but it has meant that I have hidden how crushingly difficult this has been. I say that I am "fine" far too often, when - of course - I haven't been fine since September 2o17. When "invisible illness" hits suddenly, it isn’t so invisible. It is utterly humiliating to go through such drastic changes in the workplace, especially when the physical effects are so poorly understood. I went from being a busy and healthy housemistress at the heart of things, to being a drain on my family, friends, and employer, and I have no idea how to make a place for myself where I can have value. Effective management of chronic pain means choosing which tasks you can accomplish without pushing that day’s pain and energy over the limit - exactly the opposite of my usual give-it-all attitude. This is often explained through the "spoons" analogy, which I will go into some other time.

I started writing this post on the day that my darling girl choristers began their Christmas stayover. I should have been with them. Two years ago, I *was* with them, and, given that it was probably the best working week of my life, I am heartbroken to know that I will never get the chance to do it again. Christmas has been very difficult, and I feel guilty for that. In so many ways I am lucky - my extraordinary husband and brilliant boys have been the best support I could ever have hoped for, my parents have been on hand for all the practical help and love a young family needs, and I have a couple of amazing friends who have not let me push them away in my dark and fearful times. But I have still lost so much of what I would say was definably me, and crippling depression and anxiety are not a fair trade, nor welcome guests. 

So that is my challenge for 2019. I need to rediscover certain values that I hold dear, and find a way forward where I can feel that they are once again part of me. I want to regain:

• Respect
• Control
• Integrity
• Faith
• Self-confidence
• Self-esteem 
• Occupational purpose

(and these are just for starters…)

I need to find a way past the black dog who sits on my chest to embrace life for what I can get out of it, not constantly look back at what it was, or what it could have been. To find a new place in this world where I can be of value, and where I can start to feel less ashamed of failing to meet my pastoral potential in the boarding house, and the impact that has had on our family. 

And if there is anyone out that who can help me along the way, you will always find me grateful. Yes, I may get scared, or sad, and go quiet for a few days, hiding myself in music teaching, mothering, and distraction techniques, but I can only hope that those occurrences become less frequent if I can work with - or through - my demons. Pain and fatigue are likely to be close companions of mine for the foreseeable future, and, having been discharged by the pain management clinic, I have to work out how to manage life by myself. If I am managing better in a year, then baring my soul through this blog will have been worth it.