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!

Find a way to glow

 

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

Well let’s try something a little more upbeat, shall we?

– Amy Adams, Miss Pettigrew Lives For A Day

Time for some good news, don’t you think? The last 2 week’s blogs have been a tad depressing. But then again, that’s what we’re dealing with; depression. And it is depressing!

But, time for some good news. Just as long as you don’t think that’s how it actually works in real life. Good news following bad in a nice little ratio. It doesn’t happen neatly like that. The depressing topics can go on for quite a while without relief!

Thanks to my amazing psychiatrist I actually am feeling quite a bit better this week. My meds have been upped again and within 3 days of increasing the dose I was coming up from the depths and feeling better, and my energy and mood have kept on coming up. Thank goodness!

My belief has been renewed that it is possible to get properly medicated and live a reasonably normal life. I stopped believing over the last little while, thinking I was living a doomed life. I have been reminded how closely the analogy of diabetes fits my disease. When a diabetic’s sugar levels go off, they feel awful but they go to the doctor and the doctor changes the level of medication. I just forgot that I need to go to the doctor and ask for more meds when I start sinking; I tend to think it’s on me to fix myself, as if I could! I’ve been reminded very clearly this time that when I’m struggling, it’s not just that I’m struggling, but that there’s something chemical going on in my brain that needs a doctor to sort out. I need to recognize it, and ask for help. That sounds obvious, but it’s not obvious to me, not when I’m sick. I just blame myself, feel like I’m not doing enough to be better, and I hibernate.  So I’m reminded it’s the level of chemicals in my brain that are dictating how I’m going, and when I need more, I need more and I need to ask for it. I’ll try to remember for next time…

I have faith again now, faith that things can be better, and will get better, and will be better. Something I lost lately.

But if I wasn’t feeling better, I was planning to write something “positive” anyway.

You know, so you wouldn’t worry. So you wouldn’t think it was all bleak and dark. To balance out the last two posts. To alleviate your concerns and to reassure you that everything is okay. Because that’s what we do, or at least that’s what I do. People who are emotionally and mentally unwell.

I want you to know when things aren’t going well because I believe in my friends and family knowing the truth. I want you to know, I really do. I think it’s good for a lot of people to know how these things work; so you understand, and maybe so it’ll help you help someone else.

Until all the condolences roll in and everyone is so worried. Until dear friends get scared, and fret about how I am going. Then I think about you, and how it’s affecting you and it makes me anxious, thinking of more questions and concerns, and I back peddle. So sometimes I tell you its all good so you can relax. And so I can relax, and I’m no longer fielding afraid questions from loved ones. My husband says this is insulting to people. To coddle them, and not let them in on the whole truth. To decide what they can handle and what they can’t. To give them the amount of truth that I believe won’t overload them, and by extension, me.

I’m sorry to do this! I don’t mean to take control of the information stream, or insult you, or lie. But it quickly becomes too much for me. Despite this, I don’t want you to change a thing. Please don’t stop feeling concern, or asking me about what’s going on. I’m just letting you in on my crazy brain!

But I think this is a very common thing in people with mental illness. I read a piece recently about “smiling depression” and so many times it IS easier to smile. I try not to be fake, but it’s still my fall back, the easier option.

It’s not about restricting your access to information about my illness and how I’m going. Like I said, I want you to know; at least theoretically. I have a limited capacity for emotion, including other people’s, when I’m not well. This is why sometimes I still say “fine”, “okay”, “not bad”, “good thanks” to skirt the question of how I’m going. Because when I’m really not well, just a simple “how are you?” is enough to bring me to tears, and have I mentioned how much I hate crying? Especially in front of anyone else! But I’m trying to be honest and open, so bear with me.

Sometimes I want you to think I’m okay, or not so bad so I can slink back to bed without attention.

It’s not that I don’t appreciate your concern.

I want to promote understanding of mental illness, but sometimes the kind concern and loving questions, while so touching, are a lot to deal with when I’m operating at low emotional capacity! When I’m better it’s a lot easier to process and when I’m well it’s easy, just the same as you or anyone, but of course the same thoughts and  questions don’t apply then.

But I am well this week. I’ve got energy, motivation, stamina. I feel good! Everything is easier. I’m doing more, and it’s draining me less, and not exhausting me just to move. My husband is happy, the house is in a little bit shape, things are just good. So none of this is fake. These are the real positives that I can see clearly with my eyes right now. Yay!

  • I’ve gotten out of bed every day this week, and sometimes before noon! Really!
  • I’ve talked to a potential employer via email and on the phone, and done an in-person job interview
  • I’ve done groceries, dropped off some clothes to be mended, washed and dried sheets, posted some clothes for refund, tidied up my side of the bedroom, even cooked dinner one night! Don’t get your hopes too high though, that’s about all I’ve done!
  • I’ve been to my GP for an appointment, to a doctor for an ultrasound, to a careers counsellor for help getting a job, and to KFC when I couldn’t figure out what to eat for lunch! That’s a lot of outings and socialising for me! On the days I went out, I went to bed when I got home, usually for an hour and a half…but I didn’t nap on the days that I didn’t go out, so that’s something
  • All this out and about meant I got some sunshine on 2 separate days. Actually on the skin sunshine!

So that’s me for this week. It’s not a lot from the viewpoint of my old life, but these days I take whatever I can take, and this is relatively awesome!

How about you? How are you? I’d love to hear from you.

 

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?