Sunday, 6 November 2011

Five Things

So, yesterday - no blog post.

Just another little reminder of how things can just change in an instant with this particular condition. I got dizzy and blacked out, as happens sometimes with my autonomic dysfunction. I fell and dislocated my hip and shoulder, and spent the night in hospital having them put back. The hip was pretty straightforward (though painful), but the shoulder, as ever, was temperamental and took several attempts. While I was there, it was incidentally discovered that my sodium was critically low at 121 mmol/L (135-145 is normal). It's never just one thing, is it? I had some IV fluids and other medications, and came home late this morning.

In light of that, the topic for today seems rather appropriate - 5 things that changed my life. I've been ill for as long as I can remember, so there's no life-altering accident, or date that I can pinpoint as an anniversary of 'the illness'. Just day after day, deterioration after deterioration (and some pretty impressive improvements in between, for balance); as I've aged, more and more body systems have been involved, and I've needed more and more medical interventions in an attempt to maintain the status quo.

So what has really definitively changed my life?

Accepting that this is my life, and that no amount of wishing or worrying will change that. I am in awe of the beauty and majesty of this planet, and of the complexity of life, and I am so grateful to be here and alive. Yes, there are days when I weep and wail and bemoan my lot in life. Experiencing symptoms day in and day out is tiring, both physically and emotionally, but accepting the reality of it has given me the freedom to experience life more fully. I am better at looking after myself, and find it easier to reach out to others as a result. I try not to waste the opportunities that I have - those precious days when I have the chance to do something new or fun, and feel well enough to seize that chance!

Meeting my husband opened up a whole new world for me. Until that point, although I'd had boyfriends, I'd always wondered, secretly, whether there was an element of pity in the way that they viewed me. Not so with this one. I feel so lucky to be in love with a man who loves me wholeheartedly, accepts my limitations, praises my achievements, supports my ambitions and is by my side through everything. He is a remarkable and wonderful man!

Physics (or accepting that I am a supergeek) was another life-changing moment. Until I started to study physics to an advanced level, I'd always thought of myself as very average intellectually. Physics changed the way that I look at the world and the way that I look at myself. The more I learn about this complex world and some of the scientific processes underlying the way that it functions, the more awed I am.

Learning that there isn't always a quick fix. Doctors (especially surgeons) really, really want to be able to fix their patients. It's hard for them to accept that there isn't always a quick fix, or even a fix at all, and often even harder for them to relay that information to their patients. I would love to be able to have an operation that would fix even just one part of me, but in reality every intervention has knock-on effects. Sometimes the best option is to focus on quality of life and symptom control, rather than longing for that one definitive treatment that will make everything perfect.

Rescuing an elderly cat with health problems from a shelter, where the vets advised me that they didn't think she'd live much more than a year. Not only has Nutmeg given me four years of constant, adoring and loyal companionship, she has also helped me to focus on quality of life for myself, through the decisions that I've made on her behalf. Nutmeg has kidney failure, and her life could be prolonged with a special diet and daily medication. After a month of both, we realised (in discussion with our vet) that she was so miserable that it would be better for her quality of life to have a normal diet and no medication. We are so grateful that she now jumps around with excitement every mealtime, showing energy that we know she shouldn't have...

This post was written as part of NHBPM - 30 health posts in 30 days:

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