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”

First day/s

[Saturday 29th, and Sunday 30th April 2017]

“So how was your first day at work?”

Well thanks for asking! Really. I’m so grateful to every person who has asked about my first shift, about starting this job, and about what’s next for me. It’s so encouraging and I hope this answers all of your questions!

Actually, it’s also a complete relief to have an answer! Being “unemployed” never got more satisfying as a reply when people asked what I was up to. Although “unemployed” is not how I ever thought of myself. I still thought of myself as a pharmacist, although the longer I wasn’t working, the looser that description felt. I thought of myself as a birdwatcher, a photographer, a bike rider, a lady who was able to lunch more days of the week than not; but that seemed to come off a bit lame as an explanation. These titles com in addition to the long term titles of wife and sort-of housekeep; although hubby would argue with the housekeep bit, most likely. And then there’s how sick I had been, and still was, and how that was impacting my ability to work (or not!). Yes, I thought of myself as sick, because it’s hard not to. I mean I was. But it’s hard to explain the full extent of that, and the gradual process of recovery, in a short conversation.

But here I am, a pharmacist again. And I’ve so surprised myself; I’ve fit back into the role like I never left! I really thought I’d lost something irreplaceable somewhere along the line!! Really! Something that would stop me being a pharmacist again. Despite my seven years as a hospital clinical pharmacist, despite everything that I’ve done well and every proof of my good work, I let some unfair feedback from my previous job get under my skin like I do with many little, minor things, plus I have some insecurity about the gaps in my work history and how they would look to a future employer, and I started to doubt myself and worry about what next.

But, thank goodness, no. I mean there are plenty of things I can brush up on, make no mistake about that. There are definitely things I’m rusty on, and there have been a couple of minor boo boos; nothing a bit less of a rush, and a bit more math couldn’t have solved! But I’m back, really back! After my first two full-on days as the in-charge pharmacist working flat chat alongside great staff, meeting lovely patients/customers, doing the job of a pharmacist I can tell you that I’ve come home with an exhausted, almost delirious but actual happy, contented smile on my face, and I feel good! I never quite got the adrenaline rush that’s meant to come from exercise, but work is definitely a rush! One of the biggest joys, and most surprising, of starting back at work has been the methadone/Suboxone customers on the opioid replacement program: they are a really friendly bunch and I’ve enjoyed chatting with them. Okay, so I might be quite starry eyed and all at this point, but it’s all gone better than I thought so I’m staying thrilled for now. I’m back. That’s the most important thing!

Okay what else? My feet have been KILLING me!! This should be no surprise when you spend 7 or 8 hours straight standing up with maybe 10 or 20 minutes sitting down. Especially when up till now it’s been more like 9 or 10 hours of sitting down with interjections of activity. Swollen ankles, aching legs, feet sending out electric shots and shooting daggers; all symptoms of half my blood supply pooling in my lower legs!! Home time means legs up above my heart to return all that blood back to my circulation…lying on the floor with feet on the couch does the trick, if you were wondering. A pharmacist who has specialised in wound care for 30 years or more recommends all pharmacists (and anyone else standing up most of their waking hours) wear compression stockings/socks every time they work for this very reason, to keep the blood flow from pooling causing varicose veins, venous ulcers, cellulitis and more. It’s a great plan. I did wear compression tights for a while in winter a few years back because they pass as opaque black tights and they make a huge difference in how tired your legs get. But honestly, have you seen those opaque beige stockings?? I may not have much to be vain about, but I’m not quite prepared for those stockings. Plus these days I keep too warm for stockings of any kind so that helps my case, but not my legs and feet.

It’s been busy! Not as busy as it should have been on Saturday, then way busier than it should have been today, Sunday! Which evened out to 2 solid days work but we only had to do 30 minutes overtime today, and got out on time yesterday so that’s a win. Unfortunately today was the day hubby was picking me up and he had to wait half an hour in the car! I’m going to drive on Saturdays, but Sundays I have to take the train cos hubby needs the car, and the timetable just doesn’t work nicely. I’m happy to sit around Ringwood station for half an hour on a Sunday morning, but I’m not keen after dark so he agreed to pick me up…dunno if he’ll be so keen next fortnight! But oddly I haven’t felt terribly stressed even when the work is stacking up. I think that these days I accept that I can’t do everything, and just pick one task after the next and keep at it till we get through them all. To give fair due, both days I have worked with amazing help in the dispensary: a 3rd/4th year pharmacy student all day on Saturday and a dispensary technician who I wasn’t supposed to have, but who balanced front of shop with helping me on Sunday. Both were very efficient dispensers, really excellent assistants and a great help with customer service and supply of pharmacy only and pharmacist only products. Plus the shop girls took all the load of processing payments as well as providing great product advice. And there was always that pharmacist out the back providing an invaluable back up to my uncertainty; what a team!!

For some reason whoever was working Friday hadn’t seemed to order medications as they used the last one on the shelf. This is the pharmaceutical equivalent of not only finding that the last sheet on the toilet paper roll has been used up, but going to the cupboard and finding that that was the last roll! And now you have a patient/customer who needs toilet paper or…you get the metaphor. We had a fair few of these annoying and really inexcusable outages on Saturday, and it was embarrassing. It’s also a problem because we can’t order on Saturday, or rather we can but it won’t come in until Monday anyway, so we couldn’t even tell people to come back tomorrow. By the end of the day we had a longer order of medications than I’ve seen so far on a weekday, and we couldn’t order anything; quite the irritation, especially for common medications.

This is going to be my main deal in this job, working every second weekend. After finishing this first one, I think it going to be okay, good even. People coming in on the weekend understand that you’re giving up your weekend for them (sometimes!) and can be really appreciative (or not)! But I think I like it! Even though I’ve taken a pay cut to be here, don’t like working Sundays, have no real entitlement to a lunch break or any other break on a weekend day, am more hectic than I’ve been in a good while, and have to keep processing scripts when I’m busting for the loo, its a job and a pretty good one, so there’s lots to be happy about! Yes, I’m happy!

Canberra Day Twenty Two

Sunday 2nd October, 2016

What a day!

We started with a sleep in, and daylight savings. Tricky balance! As soon as the sun came through the curtains I was wide awake, rearing to go! There were birds to see and beaches and maybe whales. I was disorganised really and ended up driving around Narooma stopping here and there and everywhere. Meanwhile hubby was having a swim…probably I would have been better off with that, but it’s all experience. Then in typical fashion after I’d been up for an hour I started to flag! Hubby dragged me out onto our little verandah and that was nice! 22 degrees today, but not a hot sun, just perfectly pleasant temperature not too cold and not too hot. Sun, breeze, the rumble of 50 motorbikes leaving our motel for their daily drive!! I pushed through and did wake up a bit ready to face the day. There’s always some anxiety in me heading out to meet new people, to socialize, to be involved and participate. I guess there always will be. But it was at a low level today; thankfully. It just sedates me, stifles me. And I end up not going cos I feel sick to my stomach, like my heart will explode, like I’ll just collapse with the weight of it all. Which I did NOT want to have happen today! My husband is very good. Her reminds me that this is the same that always happens, that we were expecting this, that its not worse than last time, that its just how it is and I’ll get through it; I’ll be fine!

We came over to Narooma to visit a friend, and she was staying with a young family of 6; well 5 were there when we visited. We had such a great day together! Starting with our usual worship then steak and salad lunch with these 3 lively young kids and their awesome parents and our friend. Miss 4, the youngest girl, hasn’t quite figured out relationships and kept referring to my hubby as my daddy! That was a bit off-putting; I never quite got the hang of what she was asking me. Like at the picnic tea beside Wagonga Inlet: your daddy needs his thongs, where are they? Well I didn’t think her dad was wearing thongs, and besides that it was her daddy not mi…hang on, she means hubby!! Here are his thongs! Over lunch she was asking us if we had kids, to which I said no. Then she wanted to know if I had any grandsons!! I didn’t quite know how to answer that one! And so on. She has the confidence of a much older person and I just loved chatting with her! She doesn’t have all those inhibitions that I had as a kid and well into my teens; next thing you know she chatting for 20 minutes to some random girl and her dad at the swings in the park during our picnic!

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The view from the kitchen door at the family’s house where we had lunch – wow! It might not be the beach, but its pretty spectacular!!

Miss 10 was lots of fun, a real tom boy and had a couple of hard fought games of soccer with hubby, who reckons she has a real talent. She’s certainly passionate! When she got new soccer clothes and a ball for her birthday she slept in the clothes with the ball in her bed! How adorable! Her brother’s always telling her if she doesn’t do such and such he’s going to beat the pants off her or something similar (meant as a joke!) but actually I think he’d be hard pressed to win one over her! He’s fun too, I’m less sure how to bracket him cos he’ll happily play sport or sit and talk with the adults, and he seems quite techy. But hey, you don’t have to have it all figured when you’re young.

The parents were so lovely, just took us into the family and we felt so at home! Isn’t that awesome? We’re away from home, out of our state visiting a friend and make a whole family’s worth of new friends!! It was a really special day! So we had lunch with them, had an afternoon nap then went to the gorgeous old fashioned town of Central Tilba, just 20 minutes inland. I’ve been there loads of times as a kid and teenager so it was a real buzz to be back! It always looks the same, but I notice some of the shops have changed owners. We had a meeting in the town hall which is right in the main street, and wall to wall with other shops which was a bit of a new experience for a religious service. It was hot in there! Sweating hot! Then someone opened a window and there is nothing so delicious as a thin little breeze wisping around your neck and face after being hot like that! The day just kept getting better with the service, and with meeting up with old friends that I’ve always caught up with at Bega on our annual holiday to the Sapphire Coast. And a total surprise meeting with a lovely friend who was visiting family of hers that I know in Bega!! We’ve been trying to catch up in Wagga for ages, and of all things we came to Tilba and she came to Tilba and we met in the middle, sort of!! That was a real thrill!!

And to top off a brilliant day, we had a BBQ picnic with our friend and our new family of friends down on the edge of the inlet and it was so beautiful!! Have I conveyed my joy and enjoyment of this day? It truly was a beautiful day physically, but also emotionally!

Oh, and before our picnic we went up to the Bar Lookout and saw whales spouting!! Again!! How cool is it to be on the east coast at the moment??

One of those things

[written sunny Saturday 9th July, 2016; updated 12th July, 2016]

Today I brushed my teeth.

It shouldn’t be a big deal should it, but it is. No one can remember the last time that I brushed my teeth…last year? It’s terrible I know, and doesn’t exactly match my pharmacists’ health promotion ethos, does it? And it’s not something my husband relishes! Or others, possibly; I haven’t heard! But it’s just gotten to be one of those things. You know, those things? Things that you should do, but it’s just a bit too hard. So they’ve slipped down the priority scale, and dropped off the to-do list. I know I have new cavities from being so slack; I can feel them on the lower left side of my mouth when I eat hot food, drink cold drinks, eat something sugary etc. It’s going to need some attention and I’m happy to give it that, but I’ve got an insurance situation to sort out before I can afford it. Soon. Interestingly, or not, I pack my toothbrush every time I go away. I even pack my dental floss, the same dental floss that I’ve had since no one knows when! That’s extreme optimism for you, right there! I don’t know why I think it’s going to be different on holidays, why I think I’ll get it done. I guess it’s something to do with believing I’ll have more time on holidays, that I’ll feel differently on holidays, that everything will fall into place on holidays. But that’s not how it works, is it? What you have at home, your routines, your schedule, your habits, you take on holidays with you. So it just gets put off a little longer, and a little longer. I’ve never been great at this, but I’ve been a heck of a lot better than this, even committing to daily bleaching my teeth for 3 weeks once! It’s probably one of the bigger of those things.

Today I washed my hands.

That, of all things, should NOT be a big deal but washing and drying my hands has become a stand off with myself! It’s like a rebellion against something, I don’t even know what. But you’re supposed to wash your hands, yeah? Well I won’t! Terrible, childish thought process, I know. But it’s there, and it takes a lot of overcoming! Every time I should be washing my hands, this something rises up in me and I just sneak away without doing it. So silly, yet it persists. Obviously because I work in a hospital there are safety limits but a pump of alcohol or chemical based cleaner is a lot easier to me; maybe I should install a couple of home! It’s just one of those things. It’s not that I never wash my hands. If I think an activity warrants it, like dirt from gardening, dusty or greasy hands from my bike, food matter etc then yes they get a good wash; or a good rub down on a hand towel that will disguise it! I’m practically a kid when it comes to this! It’s the little times when my hands aren’t dirty, but its tradition (and probably hygiene!) like before a meal, after a meal, little things. In my mind. Probably not in others minds, but it feels like unnecessary energy that I can’t afford to waste, so I save my efforts for something more essential, as least to my way of thinking. It’s one of those things which seem like why wouldn’t you just do it, but I feel like it will take too much energy. It’s a fight with myself.

Today I walked one kilometer.

Walking, any walking, has become a big deal since I got sick. I never used to think about the things I asked my body to do. I walked as long as I needed, I ran for exercise, I loved swimming for fun, weights were my favourite form of exercise, I’ve done a couple of bootcamps including one at a boxing gym, pilates was my relaxation, and so on. But now, I struggle a lot with it! For various reasons, I suppose: I’m fat and heavy, I’m slow and sluggish, it takes energy and effort and motivation, I’d rather catch ANY other form of transportation, my legs rub together and chafe til they’re red raw unless I wear undershorts or leggings, it drains my mind and my body, and I’ve come to associate it with pain and suffering. I know, a little over dramatic! But there you have it, it’s one of those things! This walk in particular was slow, and it wasn’t for exercise; it was for bird watching and photography. But hey, it was outside in the sun and breeze, and it was a kilometer. I take it however I get it, and don’t sneeze at the little bits of exercise however they come. I’m meant to be exercising more. Well that was more than yesterday, more than the day before, and more in one go than I’d done for the whole week and probably longer so I’m counting it as a win!

Today I rode my bike.

And it reminded me that I do love my bike! I’d forgotten that. I quickly forget the joys, and never-endingly remember the pains; it’s not a good way to be! I keep planning to ride with Wheel Women and sign myself up for rides optimistically hoping I’ll feel like it by the time they comes around. But then I pull out closer to the day as it becomes clearer that not having left the house or changed out of PJs for 2 days, it really isn’t going to be likely that I’ll be up and dressed by 8.30am ready to drive 45 minutes across the city! Or I heave a sigh of relief when a planned ride is cancelled due to rain, path flooding or wild weather. Then I roll over and go back to sleep. Well that’s been the pattern lately while I haven’t been well. Before today I hadn’t ridden or been on my bike even since the 3rd of June! Five weeks out of it! I think I’ve had 5 weeks out of a lot of things, to be honest. It’s been reasonably bleak for me and with me, and that’s when all of these things, those things, fall away because it’s too much effort to keep them going. But flying downhill brought on that high, that endorphin burst and suddenly I was in my zone, loving it! And I flew all the way home, even up the hills, and that was that, I was back, mentally. And when you’re there mentally, you’re there!

Today I climbed hills on my bike.

If you know me and my riding, you know about me and hills; we have a difficult relationship! Frankly, right now, I’m not built for going up hills! My weight is very much against me when trying to defy gravity by going up. Nevertheless, the hills are there and they do come across my path, and at the end of the day I do have to get up them somehow. So when Wheel Women ran a class on climbing, cornering and descending, it sounded like exactly the skill set that I could benefit from! So how did I get to that class when I hadn’t gotten to any other rides? My innate cheapness!! I put down money for this class, little though it be, but it’s a powerful motivator in someone with Scottish blood, however diluted it be! And I did learn some super helpful tips to help me up those hills. And then I flew down them again, but that’s the fun bit, the bit that gives you a rush! The other bit, the climbing is different, but I guess it’s a means to an end if you like. It’s still hard. But I did it today! I conquered one of those things, at least for now.

At the end of the day, what a day?!

Better than I’ve had in quite a while! I’ve been struggling with depression lately and it has sucked, but suddenly on Thursday night when I woke up from my nap, something shifted! I was high, elevated in an energetic and motivated frame of mind. Just like that! If only I could click my fingers and get that result! Who on earth knows what it was that tipped me over, impossible to figure out. But YAY!

So what you’re seeing here is the chemicals in my brain giving me a booster shot to actually manage to do some of those things. I even cooked tea one night this week! Rare event these days! When the chemicals all line up, life is good. It’s easy, way less effort, far less forcing myself around. It just happens and we’re all relieved. And vice versa, you understand. But for now, for however little time I have this little break, it’s nice to use it to do something. It’s not perfect. My ride was still hard! The hills still hurt. My walking was still slow, although that was more for the sake of finding birds, and it wasn’t far, but still. I washed my hands but not all the time. And I brushed my teeth.

What I didn’t do today was shower. It’s probably the hugest of the things. To get into our shower you have to climb into the bathtub. Every time I think of having a shower, I think of having to hoick my leg over the side and it just seems like too much effort! It’s such a small thing, right, but it literally seems like it’s impossible. Once I’m in its great; I love a nice hot shower and feeling clean again, once I’m there. It’s just the getting started, which is after all, the issue with all of these things; getting started. It’s pretty much classic depression: issues with motivation, energy, self care. It is amazing what lengths I’ll go to not to have a shower, and how long I’ll go between showers. And by amazing, I also mean embarrassing! After Bali, I had a mega battle and I almost lost count but I think I went more than two weeks and no shower, and unwashed hair! You may have noticed! I still used deodorant and perfume so hopefully I didn’t stink, but it wasn’t a nice episode and finally my husband had to drag me to the shower and make me get in. And it was delightful! All that fuss and bother and argument, vanished, and I had a lovely time and came out feeling wonderful! It’s one of those things!!

That’s today [read: Saturday 9th July]. Tomorrow we have to wake up and do it again so we won’t get too carried away, but today those things have had a bit less hold over me.

So, the next day: Sunday morning, the hardest morning of the week. Mainly because I ideally would aim be up and going earlier than I may have done for the other 6 days of the week. But today I was up by 9am and actually feeling like I was up and going, not sluggish or doped out. My anticipation of the coming Sunday can mean that I go to bed late, and so not take my tablets til late just before I go to bed, and so I can be a bit sedated by the effect of my tablets lasting well into the morning. I have this contrary thought process that not going to bed will prolong the next day’s arrival…obviously it’s just the opposite. But it’s another reason why waking up Sunday is a complicated thing. Sunday morning is also traditionally when I wash my hair. I should really change that, if common sense prevails. It’s just another thing to get past to get to church: waking up, clearing my head, getting fed and watered and tabletted, showering, dressing and getting out the door not long after ten.

But today was pretty successful. I actually had a shower, and even dug out some moisturizer and did my legs! A miracle of a day! I’m energetic but not irritably manic, the best way to be. Touch wood for more days like these. I’m active, I’m wanting to fill in my day instead of hiding from it; I’m like a normal person!! YAY!

Calling me

This is probably a long overdue explanation. Actually I can’t believe we haven’t talked about this before. But to save hurt feelings and offense, here’s the deal.

Since I’ve been sick, starting with generalized anxiety disorder and progressing to bipolar 2 disorder, I’ve hated the phone!

Well I hate the phone function of my phone. I actually quite like the rest of my phone, and we spend a lot of time hanging out, my phone’s operating system and I.

What I hate is answering the phone, dialing numbers on my phone, calls coming up on my screen, making calls from my phone, talking on the phone.

There are some known reasons why, and some unknown reasons why. I rationalize it as best I can, but at the bottom of everything there is this primal aversion that I can’t remedy; an involuntary reaction that overcomes some of my attempts to change it.

I guess part of the response is about uncertainty. If there is one thing that anxiety fears it is the unknown. It has such a field day when a thing is not known or not fully known. An unknown phone number coming up on my touch screen sends my heart rate, my pulse, my blood pressure, everything fight or flight about me into a tizzy and I put the phone as far away as I can be by arm’s reach and stare at it as it rings, until finally it stops. Then a missed call message comes up on my screen, then maybe a voice mail. It’s a lot to deal with! Suddenly my day’s calendar has exploded! By end of day I have to get up the nerve to open and read the missed call message, and, shoot me now, listen to the voice mail and hopefully not, but possibly, have to respond to it. Having a known contact’s number pop up on my screen isn’t much less exhausting. Answering the phone, opening my ears up opens a direct pathway to my heart by emotions foreign, unknown. Here’s hoping that responding to the message only takes an inner acknowledgement, please not a text and please please please not a phone call!!

So, the uncertainty. What is so uncertain? Everything, to anyone inclined towards anxiety. Who is it going to be, what are they going to want, how long is it going to take, where are you going to be when they catch you off guard? When are they going to call? What are they going to say, what will I have to say? Nothing can be known in advance, and therefore nothing can be controlled which is how I prefer to operate; controlled. I constantly worry about what emotional toll happenings around me will have on me. How much emotional money do I have today, and how am I going to spend it? Because once it’s spent that’s it for me, off to bed to recharge for as long as it takes. It’s inconvenient, but it works. So I feel that I have to carefully monitor the cost of happenings around me, and what capacity I have to pay for them. That’s just how it is.

That’s if I’m having an anxious day. On a depressed day, it’s much less complicated. The sheer act of reaching my arm out to my phone, having to lift the phone up, transport it to my ear, roll over so that I can put the phone to my ear…just far too many moving parts for me! I’m going back to sleep, they can call later. Or never. Let them leave a text message, a voice mail. Let them leave 10, I’ll deal with it at some undetermined later date which may never come, although that brings it’s own anxiety around having something outstanding awaiting my attention and the same what ifs as before, except I can control the when with a beating heart and shaking hands. So, same result, different motivator and vastly different range of emotions assailing me.

Please don’t take me wrong! I love that you care enough to call. The thought behind it is precious to me, always. Consider your good intentions registered and appreciated even if you never get through to me; even if I’m not thoughtful enough to call you back and tell you so. It’s not you that I have a problem with; I like you. It’s my insides that are roiling and writhing regardless of who it is coming across the telephone network. So many lovely friends, and I let you go to voicemail. It hurts me in the heart to do it, but my jiggling stomach and nerves win out most of the time. I just can’t do it, I just can’t pick up that phone! I do mean to get back to you, somehow. I think about it, about how I’ll let you know that I did get your message, I did note your call. I think, maybe I’ll text you later, or maybe this time I’ll manage to talk myself into calling you, you know, later. But maybe I won’t, and I’ll feel bad, very bad about it. Not bad enough to call, necessarily, but bad. I’m sorry. You don’t deserve this kind of treatment, but I so often just can’t find it in myself to do better. Lately I’m improving, but it’s early days, we’ll see how those nerves go.

So, I text. I love texting! I can read and reread your message to get the absolute fullest meaning out of it, then I can draft and redraft my response, leaving some waiting time in between if I need to ponder new information or digest new events. When I’M ready, and composed, and emotionally calm, and in control, I can text you a reply. No sudden information overload, or rush of emotions. No misspoken words, or “I didn’t mean it like that” moment. It’s just better!

I tend to mostly not pick up the phone, except to my husband who is always safe. Some closer friends also are on the okay list, but that list doesn’t apply at all times on all days so if I let you ring out, please don’t be upset or offended or think that you aren’t a great friend. I just don’t have the emotion to spend today, sorry. Not to suggest that you suck the energy out of me; all interaction does, it’s not personal. As a matter of fact, I tend to put my phone on silent. I also tend to leave it around the house, or in my handbag, or upstairs, or in my work locker; I don’t tend to carry it around with me. So it may be the case that I just didn’t hear your call, or see that you were calling, or maybe I did see it and just couldn’t make myself answer. Either way, I still love you! I’m just dealing with my demons!

If I answer a call, it’s like metaphorically throwing myself off a bridge. It’s a mentally drastic action that I can’t take back once I’ve hit that button, risky to my emotional state, putting myself out there exposed and open to injury inflicted by unknowing people. Will I be hurt, will I get through unscathed? Am I okay today and able to get through what this potentially might be? Or will I regret trying to be better by answering? I would like not to assume that everyone and everything is out to get me, and I don’t really. I just don’t have the emotional capacity that I used to have, that “normal” people have. So I tend to be overly wary, overly self protective. Maybe it’s over the top, maybe it’s insulting. But it is what it is.

I know it’s etiquette to return your call. About that. Deliberately dialing a number with the intention of talking to someone brings every bit of fight or flight flooding in, again! How many times can I take this experience without permanently depleting my adrenaline stores? Add to that an enormous lump in my throat so that I can hardly speak normally, and an overwhelming urge to hang up at every ring! If I actually get to say hello, it’s possibly been an ordeal! Mostly. I have good days. Better days. When it’s not so hard. But mostly I’ve had to take myself firmly to task, and work myself up to dialing back.

Here is a not uncommon scenario: I let the phone ring out cos I just can’t answer, then when I feel ready I text you back. You assume I’m free now and wasn’t before so you call me again. I let it ring out again cos you know, then I text you again. Until you get tired of calling me, I guess!

I suppose I’m trying to condition anyone who rings me to leave me a message. Then I can call back if and when I’m ever ready, or I can text you safely from the comfort of my own home, at the time of my choosing, controlled by me, no risk to my emotional self. Texting is good. It’s safe, I can compose what I want to say, I can respond at my leisure, no one rushing me or hassling me, it’s all in my hands, in my control.

But I guess sometimes I need to be challenged to do it the “normal” way, so don’t stop calling. I want you to stop in that I want to stop having to answer, but really it’s your choice and I’m trying to be better, to deal with it somehow. After all it’s the thing, it’s not you. You are my friend, and I like you, so I’m trying. Make me try.

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.

 

Back

Before I post this week’s missive I just want to say a huge thank you to each and every one of you who stopped by my little blog last week and read my disturbed thoughts. I was very much of two minds whether to post anything so personal and dark, but you all were so faithful in reading what I wrote, and those who contacted me were so kind that you restored my faith in writing the whole ugly truth. I love you all, and watching the stats rise was such an enormous encouragement to me! THANK YOU!

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Back

Written late April 2016 after my latest work contract ended; updated 20th June 2016.

“I worked my a*& off to get back, really back; harder than I’ve worked at anything my whole life. ” – Detective Marcus Bell, Elementary

…”because there’s nothing like getting back for getting better” – current WorkSafe Victoria Return To Work campaign

Getting back; it’s what everyone recommends for getting better. I resisted it for a long while in my original sick leave but in the end I found that it was true! Occupation, purpose, time consuming work; it all helps to develop an inner feeling of being better, getting  back to normal.

But, as my deepest darkest suspicions have been humming a tune all along, it’s not enough. I’m not enough. My efforts are not enough. It was a dark moment! Or two…

There have been tears, and more tears; it was so disappointing!

More doubt, more undermining of my confidence that was fickle at best, more breaking through my denial of recovery to let the truth of ongoing illness in. Then there are moments of resolution, mostly led by my husband’s sensible, problem solving , kind voice where I decide actually I will be okay; I’ll be okay, I’ll figure it out.

It’s not what I want; I think that’s obvious. If I could do anything to change it I would. I tried to see if there wasn’t any way around this decision to relieve me of my job by not renewing my contract. I spoke with the powers that be reminding them of my loyalty, commitment, long term intentions and proximity, for goodness sake, if nothing else! But I can’t fight my way out of this. Maybe I have to let it be.

Oh that so does not sit well with me. But a good friend reminds me that maybe that’s the point; maybe this is a long term play for my strength of character not a short term game for my own convenience! Ahhhh…it’s hard to swallow but maybe I need that.

So here’s the situation: the workplace I was working in when I got sick doesn’t have any obligation to me, to rehabilitate me. I was working there on a one year contract when I got sick at the half way point, and wasn’t able to return to work for any more than two mornings a week in the last 6 weeks of the contract. And that was just a desperate scramble to try to be okay enough to stay on there. I was utterly unable physically, and not even slightly ready mentally to apply for a new full time contract, the only way that I could’ve stayed on. So the contract, and with it, the obligation, ended and I went back to bed. Not what I wanted, but I couldn’t do anything about it; I just wasn’t in a state to change things. It was what it was.

So then, after another 9 months at home, I started back at work with a short term contract at the next place that would take me. They also have no obligation to me, other than to offer the same support that they would offer any other employee. They took me on when I was returning to work; they knew that, and made some allowance. But it’s not their fault, not their duty. No special exemption or workplace mentors; no keeping a place for  while me while I convalesce and struggle to get back into the swing of things. You have to compete with every other well person and that’s just how it is. And when it’s over, it’s over!

Done                     3rd May 2016

I’m overwhelmed, I’m in dismay,

The job I had, the work, the pay

It did me good, it helped me stay

Above the blue line, come what may.

 

Now it’s over, my sad reply,

Tears of hurt and loss I cry,

Feeling useless, have to sigh

For fear of dark days once again nigh.

 

It did me good, it kept me busy,

Filled my days and weeks, and nearly

Convinced me that I was now surely

“Better”, “fixed”; was I silly?

 

Silly to be believe in “health” so easily,

Of usefulness, I thought sincerely

That all was good, I did feel truly

That this was it, “I’m better, really”.

 

The routine and the structure, see,

Work and occupation the key,

Helped me build life, ABC,

From sickness to health; 1, 2, 3!.

 

I got me carried away, and planned

To stay and work, but now that’s canned!

“I have no hours for you ma’am”,

It’s over; nothing to be gained.

 

You’re done here! Well it hit me hard,

I did not see it coming, barred

From that which made my life less marred,

It feels unfair, am I so tarred?

 

By that which has my brain entangled,

Bipolar, why have you now mangled

This, above all else was dangled

Hope, that by work I’d disentangle.

 

Please let me stay, I love it here,

The colleagues; the task; the jolly cheer,

And to my home it is so near,

Please let me stay, just anywhere.

 

I’ll type the scripts, talk on the phone,

Check the work that others have done,

I’ll smile, be nice, work with anyone,

Please, please, please don’t say I’m done!