It's very hard to know how to live your life when all the normal structures that used to give it a framework and make it make sense, have gone.
Usually we have societal and social boundaries (time, responsibilities, energy, other people's wishes and needs etc) that manifest themselves in terms of the chunky things in life – our families, our jobs, our annual holidays etc. So when you live within these structures, that at the time can seem restrictive, it's then absolutely great to have an occasional free day, when you can sit on the sofa and watch tv and have a doze, or go away for an amazing weekend.
And yes, now that I am mostly recovered and not yet working, I could do almost anything in terms of time and money to an extent, which sounds like great liberty. But this is hugely tempered by the fact that I can do virtually nothing in terms of physical ability. And given that people are – quite rightly – busy working and with their own lives, and I've never been a great one or doing stuff on my own. It leaves me with too much time to question what to do with what's left of my life and to reflect on how much I hate losing so much in terms of what I can still do.
Sure, if I liked doing crafts or watching box sets or playing computer games or even cooking to a degree, I could fill my days still. But I don't. I want to be back playing hockey with my friends – it is SO shit to be the 'disabled' person stuck on the sideline when everyone else is my age (and older in many cases), but they are not tainted by the bollocks of Myeloma.
I want to be planning active days out and busy weekends, but the first question I now have to ask myself is not 'which of these brilliant things shall I do first?', but instead 'will I be able to do that?' And in many cases I know the answer in advance is No. (Kiss goodbye to the longest zip line in the U.K., rebooking the adventure trip to Ethiopia that I do wanted o do with Fitz and Lyds, or anything else vaguely active).
And then there's the 'I might be ok on the day but I never know' type of activities, where I could take a punt on booking something with my fingers tossed, but then run the risk of not being able to do it when the time comes, and spoiling not just my day but someone else's too (and losing the cost of whatever it is, bad enough for me, but crap if it will affect someone else too).
So it's all a bit of a stalemate at the moment. Am seeing the back doc again next week in the desperate hope he might come up with something, but he's the chap that last time said 'there's nothing else I can do', so I'm probably pissing in the wind on that one.
I just feel supremely stuck. I don't want to believe that this really is 'it' for the rest of my life, as it's just so limited. And yes, I probably don't even need to add the caveat that 'it's better than being dead', which of course it is. But imagine your life without some of the things you really love. And just those you take for granted – bring able to walk round the supermarket, taking the dog out, staying awake when out for dinner, emptying the dishwater, going to work and having a normal boring day – and you might see that without some of the basics, life gets pretty turned upside down, pretty quickly. And it's hard to find a new path when you still hope you might somehow get some of your old one back, even when every door slams hard in your face.
So I am still here, still feeling like I am treading water and yet am not quite sure what I'm waiting for. And have no belief that anything else is actually coming – it's like a dog waiting for its dead master to magically return. Never, going, to happen.
The miracle back cure would be a great start but is pretty unlikely, although I will keep chasing the dream. The tiredness is a bit better with the steroids, but I am still sleeping a lot each day. Poor Hawksey – great company I am straight after dinner when I fall asleep on the sofa 7-9pm, then go to bed and am wide awake 10pm-1am..
And so its an odd time. I have hours of free time, much of which I spend asleep. The rest is a mix of nice stuff and dull chores, and then more kip. Luckily we have some good weekends coming up, which will obscure the reality for a while, always a bonus. Reality quite frankly, is shite, and I'm up for anything to keep it at bay x