Claire

Let’s change it up.

This morning I came across this video, Claire Wineland on How to Live When You’re Dying, from an amazing young woman, and she has a very fresh and inspiring view on living with an illness that is incurable.

I almost feel like I don’t fit in any category with her because her illness is very physical and her life expectancy is so short. Yet here she is talking about the pitfalls of dating, the joys of living overseas and travelling, the experience of going to university, and the fun of going out with friends. Almost as though she wasn’t sick.

How’s that for a radical life? Putting your illness in the corner, and going on regardless.

She embraces a life of living so that when she dies, however soon that may be…and compared to most of us its very soon, she will have lived a full life that she can be proud of. Her fears? That she won’t have lived. That her illness will have been her whole life. That she lived to die.

I tell you, I admire this girl so much! It is hard not to think about your illness all the time: how it affects you, how its changed your life, what you don’t have compared to other people. And I don’t have a life expectancy date hanging over my head! Sure, I’ll always have this illness, and there’ll always be issues to deal with, but death is not a guaranteed part of the package. Not any more than any other person in the world.

Check out this girl.

Whether you have a chronic illness or not, her take on life is so refreshing and I feel like it gives me a kick in the pants to try a new philosophy. This is not about being fake and pretending nothing is wrong. That is never helpful, or useful. Something is wrong; lay that on the table to begin with. But life goes on. This is about finding a way to live around your illness, and still living a fulfilling life.

It will always be something of a struggle to push past illness to life. But it can be done, at least some of the time. So let’s give that a go!

 

For an extended version of Claire’s interview video, check out Cystic Fibrosis taught me there’s no “normal life”

I did a bad thing…

I did a bad thing.

I got sick, and then I started getting better, then I stopped. I didn’t get better. I just stopped.

I’m in illness limbo. I’m much better than I was when I was severely unwell, but much worse than I was “before”, before I ever got sick. Well okay, maybe not much worse, but worse. I’m not going forwards, I’m not going back. I’m not bad enough to complain to my doctors, but I’m not where I thought I’d be, back to “normal”.

It’s been a long time now since I got sick, and I’m definitely well over the acute phase of crippling anxiety, black depression and the odd weirdly happy and effective days of mania.

I was just commenting yesterday that I never have dysfunctional anxiety anymore; just regular, everyday person anxieties that are reasonable and well founded and manageable. But I was wrong. At that very moment it was sneaking up on me again and bam! it got me!! But only a bit dysfunctional. I don’t have the darkness and hopelessness of depression, just the sluggishness and lack of motivation and tiredness…but even that waxes and wanes giving me better days and worse days due to no particular reason. Mania continues to be a little brightness on the horizon that breaks through any residual depressive effects and gives me a little happy and useful and wish-I-was-like-this-all-the-time day or so, here or there!

I’m medicated like you wouldn’t believe, and a recent experiment my psychiatrist and I tried of reducing my meds has shown me very clearly that without these meds, I’d be right back in the thick of my acutely unwell stage!! It’s not like they aren’t working; they are, they really are! My moods have been a very difficult case to crack and it has taken 4 medications for mood and months to years of appointments to get on top of the main symptoms. And they work. I can, somewhat distantly now cos it’s been a while for some, remember how I was before and after starting each one, which may just be my saving grace down the track when I, like every bipolar patient, get to the stage where I think I might just be better off not taking my meds. One request of you, friend: don’t be the person who suggests I should go off my meds. The consequences of taking on that responsibility may well be more than you can bear. You take my life in your hands if you suggest any such thing. For all I complain about where I am, I always know very clearly that I would be so much worse off without my meds. No question. Ever. Life isn’t perfect but taking away the crutch holding me up isn’t going to help. So save it, keep it, sit on it, hold it in, swallow it; you are not helping anyone, almost ever, by making any such suggestion. You are warned.

But here we are. I’m not sick, but I’m not as well as I thought I’d be. As I hoped I’d be, planned I’d be, “knew” I’d be. Isn’t this the dilemma of every patient with a chronic illness? I go to the doctor with my illness, the doctor says okay I’ll treat your illness, I hear “I’ll get you back to normal”, and go on my way happily ever after. I think I’m presenting the doctor with a chest infection that he can fix, and then return me to my previous health. But this is not a curable disease. The treatment works, the doctor says I’ve treated your illness, I look forward to getting back to being me, my old self, and then, as the Goons would say…suddenly, nothing happened!! Yes the treatment worked. Yes the doctor has done his job. But this illness doesn’t go away. Because that’s not how it works. The illness stays. The treatment stays. The illness has just been put back to bed for a while. But there are some residual effects that haven’t been buried and they remain and irritate me. Because that’s how it works. I don’t know what it would take to get every last little bit of it under the surface…I don’t think I want to know because it either isn’t possible, or the trade off would be too severe.

I’m starting to think “normal” isn’t a reality that I’ll ever reach again. I’m starting to think that my life has been permanently changed. I’m starting to think I’m stuck here.

I don’t know.

All I know is I’m here, and everyone seems to want me to get fitter, healthier, stronger, slimmer or shall we shall less large (keeping it to reachable goals), more energetic, more involved in my own life, more something or other. And don’t mistake me, I want that too. I want it all. It’s just that I can’t see how. I can’t see how to get there. Some people say, well you made it this far through, I’m sure you can do it. But my little/big secret is, all I did so far was hang on. Through all of it, I didn’t really do anything that active; I just hung on. Now the goals require something more active and I don’t know if I can do it. I’m not sure that I can do what’s required. I guess that’s why I’ve stalled here. The next step possibly requires more than I can give.

Aaaaahhhh. Sigh. I did something bad. I stopped getting better. Can I start again?