I look forward to seeing you there!
or, a retrospective on my twenties
I’ve been mentally writing and rewriting this in my head for a long time, but it only just occurred to me to actually write this as a real post (well, a week ago, but it’s taken me much longer than usual to review and publish it). I’m about to turn 30, and I’m incredibly relieved.
It’s about time.
To be frank, my twenties have been less than ideal, and certainly nothing like I expected they would be. They’ve largely been dominated by health battles – fighting first a mental prison, and then a physical one.
In the year before I turned 20, I attempted suicide twice and was diagnosed with major suicidal depression with psychotic features (based on one traumatic psychotic episode), anxiety, panic disorder and agoraphobia, and had a borderline eating disorder. When my 20th birthday rolled around, simply being alive was an achievement. I was being treated by a whole team of health professionals, I was on a sickness benefit, and living back at home with my parents.
It was hell. A hell that existed within my own mind, tormenting me and cutting me off from everyone who loved me in a thousand ways, as I’m sure anyone who has suffered from depression could attest to.
Eventually, I got better, and with hard work and a lot of support from family, friends, and those health professionals (particularly my psychologist), I began to resume a somewhat normal life. I ventured briefly back to university (prematurely, unfortunately, as the stress was too much for me and I dropped out – again), then went to a natural health college instead and earned an aromatherapy diploma (which I’ve never used, but I did manage to finish the course), moved out of home (technically, into a separate flat below my parent’s house. I did pay them rent though), fell in love, worked in a couple of different jobs, stressed out like everyone does about what I was doing with my life, made some mistakes, drank too much occasionally (but only occasionally), broke someone’s heart, and moved countries. ‘Normal’ stuff, I suppose.
That all happened by the time I was 23. I was finally healthy, happy, had moved to a country and city I loved (and still do – I’m still living here), I was back together with my first love (who I’d met when I was 16 and an exchange student in Europe), I had a ‘real’ job, and I was living with my boyfriend and a few housemates in a charming old house in the inner suburbs. Over the next few years we travelled a little bit, got progressively better jobs, I made new friends, took up new hobbies, we bought our first house, and got the most adorable dog. For a couple of years things were good. Really, really good.
And then, three days before my 26th birthday, I woke up with a bone-crushing exhaustion like nothing I’d ever felt before. I didn’t know it was possible for a person to be that exhausted. I was wrong – not only was it possible to be that exhausted, it was possible for things to get much, much worse.
For the first couple of months, I tried to push through it. I took a couple of days of work, went back, then a couple of weeks off, went back, gradually showing up less and less reliably until eventually they told me to go away and get better. So I took a couple of months off, and then over the course of a month tried to go back again, failed miserably, and didn’t return. Eventually, a few months ago, after I hadn’t been to work at all in over three years, we officially parted ways.
I didn’t take that long to work out what was wrong with me, and when I was officially diagnosed with Chronic Fatigue Syndrome (CFS) it wasn’t a surprise. One of my sisters had it for the better part of ten years and I’d seen her struggle. Of course, I never thought it would happen to me – no-one ever does, do they? By the time I got sick she & I were living in different countries, and she was dealing with her own life issues, so she wasn’t a constant support. There were a couple of things I had learnt from seeing her struggle though – one, that it was possible to get better, and two, that it was possible to spend an awful lot of time, energy, and money on ‘cures’ that ultimately didn’t help much, if at all. From watching her, I was pretty sure only two things would help me get better – not giving up, and time. (Additionally, I was, and still am, under the care of various health professionals who have been an enormous help and support. A good doctor is invaluable.)
Easier said than done though. If I hadn’t had those earlier experiences of attempting suicide, CFS certainly would have driven me to it. I don’t know what correlation there is between CFS and suicide, but I wouldn’t be surprised if it was high. Over the next four years, I battled extreme exhaustion, insomnia (yes, it is possible to be bone-crushingly fatigued and simultaneously unable to sleep), dizziness, nausea, vertigo, headaches, muscle pain, depression, anxiety, a visual issue that I’ve forgotten the name of (basically, I couldn’t look at anything moving to fast, from objects moving past car windows, to certain tv shows), among other things I’ve blessedly temporarily forgotten.
I had days, and weeks, and months, where I could barely walk from one room to another. I had to hold on to walls, and was sometime lucky to make it from one spot of the house to another without falling down. I had a headache (a singular, constant headache) that lasted for over a year, and still get them every week, although not every day any more. I stopped being able to drive and could barely leave the house. I had to ask for help for everything, from getting to appointments to getting to bed. It put a huge strain on my relationship. I stopped seeing almost any of my friends. Phone calls to my family were increasingly infrequent, as both talking and listening to anyone was too exhausting. I couldn’t stand up for long enough to have a shower – I had to sit on a stool. Washing my hair was a marathon (not cutting it short was one small way I refused to let CFS win). I had to remind myself to keep breathing, and force myself to expend the energy required to eat. Before CFS, I took things like the ability to lift a fork, chew, and swallow for granted. The basics of life became mountains that often seemed insurmountable. On the few occasions we did manage to make it to important social events like weddings, I had a sleeping bag in the back of the car so I could sneak out and lie down when I needed to. When we showed up to things at all we were always the first to leave. Attempting to hold conversations felt like torture. The inevitable questions from both friends and strangers – what do you do (nothing, sick etc, blank stares), why aren’t you drinking (a cultural oddity these days. I had one sip of champagne at a wedding a couple of years ago. Other than that, I haven’t been able to drink alcohol or anything with caffeine for four years), the seemingly innocuous but greatly dreaded ‘How Are You?’ that almost every conversation seems to open with, the stories about ‘so-and-so who I used to know who had that…but they got better in six months/two months/one year’, the useless and unasked for advice that managed to be simultaneously condescending, hurtful, ignorant and sometimes harmful had I actually followed it…I dreaded it. (In the unwanted advice scenario, I generally attempted to smile, say thank you, and redirect the conversation or walk away).
Leaving the house felt like venturing into an alien planet, where people looked like me but were living lives so different to my own as to be incomprehensible.
My world shrank to the size of my couch, and my confidence plummeted. I couldn’t relate to anyone, and just continuing to exist felt like the greatest trial I’d ever faced. I was in constant pain, constantly exhausted, and lacked the means to truly describe my experience to anyone. It was isolating, debilitating, depressing. The tools I’d learnt for coping with depression were no use when faced with CFS. When the only energy you have is just enough to keep you breathing, nothing else really matters. I stopped caring.
But somehow, I managed to keep going. B’s support was invaluable, even if sometimes it felt like additional torture when he insisted I had to get up, eat or walk. Without his encouragement I wouldn’t have made it through the worst years. I kept getting out of bed every day. Eventually, I started being able to do dishes and cook again. The first time we were at B’s parents house and I was able to help dry the dishes instead of collapsing onto the couch straight after dinner felt like a miracle. About two years ago I started driving again, just to the train station and back to start with. Now, I can occasionally drive for a couple of hours if I have to. I started going to restorative yoga. Eventually, I could drive myself there. Last Easter I stopped going to restorative yoga classes and started going to regular yoga classes. I started cooking again, and now I can cook proper meals most days (although I still have more ‘bad days’ than I’d like where we end up getting takeaways because I’m too tired to cook). I started going for walks again – at first just to the local park, and now I can walk for a few kilometres if I need to (not every day, but on a regular enough basis). I can clean my own house again (important, as we’re currently trying to sell it). We can plan ahead with some degree of confidence that we might actually be able to predict what I might be capable of doing on a given day. After years of barely leaving the house, last year we went on our first overseas holiday in four years (and got engaged, finally – see previous statement on being able to plan ahead! A wedding would have been an unthinkable trial a few years ago). At the end of this week I’m going overseas on a yoga retreat by myself – something I wouldn’t have considered as a possibility even a few months ago. Life is finally starting to look up.
I’m not truly better yet (I still need to have frequent rest days, and short rests every day, and have some days where I can’t leave the house if I’ve pushed myself too much), but I’m getting there. Getting better has come with new challenges, but it is a great relief to be seeing (and feeling) continued progress towards ‘normality’. Towards a level of health that so many people take for granted – I know I certainly used to. My twenties have been less than ideal, and it’s been difficult not to resent that sometimes.
All that said, it is a great relief to be exiting my twenties and entering my thirties. Finally. I’m ready to get on with my life and leave this decade behind me. It hasn’t all been as bleak as this post may have seemed – there have been bright moments even in the darkest years, and I am certainly aware other people have lives much worse than mine. I also know there will continue to be challenges (that’s life after all) but turning 30 feels like turning a welcome corner.
On that note, it’s also time for a fresh start here on my blog. This post and all previous posts will soon be moved to a new location (beachlogarchive.wordpress.com) and will shortly be removed from this site. I’ll also be doing the first theme upgrade I’ve done here on the blog – it’s been the same since I started it about seven years ago and it’s time for a change. I haven’t yet decided if there will be significant changes to content, but I hope you’ll stay with me as I figure it out.
Finally, to everyone who has been reading my blog over the years, thank you for your support – even if it’s silent. You mean a lot to me.
Note: if you are suffering from any kind of illness, ask for help. From your family, your friends, or resources like beyondblue.org.au. Go to the doctor. Take medication if you need it. Most importantly, just keep going.
This year has been amazing, terrible, exhausting and exhilarating.
It has been amazing – B and I travelled to New Zealand for my sister’s wedding, Japan for a holiday, and had a weekend away locally to look for our wedding venue. 13 years after we first started dating, we are finally engaged and planning our wedding. We took the photo below was taken on the grounds of our wedding venue, in the south of Western Australia.
Best of all, I actually had enough energy to enjoy at least parts of all of these things.
It has been terrible – our dog/my constant companion nearly died (he’s in remission now, so he’s doing pretty well at the moment), B’s mum was really sick (and still has some terrible days), I had issues with my work when I wanted to return to work part time (we eventually reached a mutually agreeable resolution that involves me no longer being employed, but it took a long and stressful time to get there), and in general the ongoing issues with recovering from chronic fatigue syndrome are a struggle.
It has been exhausting – because everything takes energy, and I have made so much progress but still have so far to go before I am ‘normal’ or ‘well’. And mentally exhausting, because engaging with the world after years of being fairly secluded is overwhelming. Having some energy and prioritising what to do with it is harder than it seems. Talking to people and trying to use parts of my brain that have rusted over is exhausting.
It has been exhilarating – seeing new places and trying new things for the first time in years. Occasionally feeling human again. Feeling more alive than I have in years.
And it has been frustrating. I am incredibly grateful that my health is improving, but I still have days and weeks when I’m really not ok at all, and it is difficult to be patient with myself. I have spent years in limbo and I would like to be out of it. But CFS isn’t a choice, and I can’t just will it to be completely gone now. I need to be grateful for the good days, and accept the bad ones, but at this point I want to forget what a bad CFS day feels like, and I’m not quite there yet. In between the bad patches I do forget to an extent – and then when another bad stretch shows up it is crushing. I am still hoping that eventually there will be no more crashes, and I will actually be able to plan my life with a high degree of confidence that I will be functioning normally on any given day, and not have to backtrack and unmake plans on a regular basis because I’m just not up to it.
Getting well has a whole new set of challenges. I won’t get into all of them right now, but one of them is simply what next? As a not-really-sick but not-really-well person (who has no idea how long this state will last for), who am I now and how do I live a meaningful life? I’m not really ready to be back in the real workforce – my health is too inconsistent for it to be a healthy proposition. But I’m also not so sick that I can’t do anything. At the moment it’s a bit of a moot point – I’m incredibly busy getting our house ready to sell, planning our wedding, and doing all the things I need to do to maintain this level of health (which at the moment are things like therapy, medication, occupational therapy, yoga, and remembering to just do nothing sometimes or I burn out really quickly and relapse). It nags at the back of my mind though, and so eventually I do what I usually do – write something. I’ve been journalling sporadically again recently. I forget how much I like it until I’m actively doing it. And journalling reminds me of my blog and how much I enjoy it when I actually write something on it – it feels like a homecoming of sorts. Like returning to a neglected, dusty room that you know can be beautiful – you just need to open the windows and sweep the cobwebs away.
Of course, I can’t promise I’ll be back anytime soon, or on a regular basis. I’m trying to put less pressure on myself. Sometimes you just need to air out that room and sit in it for a moment, remembering whatever feeling it used to give you, before closing the door again and moving on.
I think I’ll be back eventually though. This is one of my favourite rooms.
Habits are so hard to form but so frustratingly easy to break. I’d finally got back in to the habit of blogging late last year/early this year, but a serious of events interrupted me, and it’s been hard to get back to it. I actually starting writing this a month ago, but my laptop broke giving me one more excuse not to write.
This year so far feels like it has been full of interruptions to habits and routines. We threw a party for B’s 30th, which was fun but stressful. My parents came to visit for a month (and stayed with us for 16 days of that month), which was incredibly exhausting and insanely stressful (and worthy of many blog posts which I was far too tired to write). B’s job contract wasn’t renewed (although he got a new one), so that was another stressful period. I got regular-sick. B had a holiday for a couple of weeks. B got regular-sick. Life kept happening.
Despite all these things making it very difficult to stick to habits or keep routines, I feel like I’ve been making some progress this year. Things certainly don’t seem as bleak as last year, and the fact that I’m writing this on my actual PC (thanks broken laptop), and actually sitting at a desk and typing instead of being curled up on a couch is a definite sign of improvement.
Some days I feel almost human again.
It’s been awhile since my last post. Things have been up and down, and definitely too busy, but despite that I’ve been feeling overall more positive, and like I might actually be making tiny amounts of progress. I’m a bit hesitant to jump up and down and get too excited (plus, that’s exhausting – I haven’t been making that kind of progress!) but I feel like I’m mostly coping at the moment.
And that’s really nice.
As I mentioned in my last post, I’ve been feeling particularly under the weather again. I’ve been doing as little as possible, but there have still been a few days where the Things To Do That Really Do Actually Need Doing meant leaving the house. All good stuff – it was B’s 30th birthday yesterday, so all the Things To Do were to do with that (not like the usual things that absolutely must be done like doctors appointments etc). I felt marginally better yesterday, so that was a big relief because I really wanted B to have a good day, and not to have to do too much looking after me.
Today though, it’s been back to the couch. I feel almost fluey today – my brain is all fogged up, my throat hurts, I don’t know what my temperature is doing, my eyes are red and weepy, and as usual, everything aches.
All I can really say is, I hope it doesn’t last too long. I’m trying to stay positive but it’s hard work sometimes.
I’ve been in a bit of a rough patch since about a week and a half ago, so blogging hasn’t been high on the priority list. The indescribable exhaustion of CFS seems to have returned full force, after a brief period of just having more ‘normal’ exhaustion. Today I’ve gone back to bed twice (including right now) and had a nap on the couch. No dishes have been done or any of the other household things that I’d got back in to a nice habit of almost keeping on top of.
I feel sad, and frustrated. I know that I’ll get through it and that I will improve again, but every time I hit a bad patch I feel angry. When I’m having a good patch sometimes it gets to a point where I start to think that maybe this time I really am getting better. Then when a downturn like this hits I feel so disappointed.
So, if my posts are a little irregular it’s probably because I’m too asleep to type. But I’m blogging in my imagination even on the days I don’t actually write – because it helps me, just a little.
I’m feeling like I really want to retreat into a cave at the moment. You know that feeling people sometimes get in the middle of winter, when you don’t want to go anywhere, do anything, see anyone, you just want to curl up in a cosy nest? A bit like that, only it’s the middle of summer.
But that’s how I feel right now – like I would like to crawl into a small, dark cave (with a comfortable couch, obviously), with just me, chocolate, some tea, a bunch of tv shows, and no coulds, woulds, or shoulds. No I should go tidy the stuff off that table, or do the dishes or I could go for a really short walk I guess or I haven’t done enough today, I should really do more even though I already feel like shit or I haven’t written on my blog for a few days, I should really do that, why am I avoiding all these things? …all the usual inner monologue stuff really.
When I start feeling like this usually the opposite would do me more good though – it usually means seeing people and getting out of the house and moving around would probably actually help me feel a bit better. But right this second, I think I’ll give myself another imaginary cave hour. All the coulds and shoulds will still be there later this afternoon, even if I stop looking at them for just a little while.
I’ve been pondering a question that I don’t always like the answer to – Do I want to be well?
It seems like an unnecessary question with an obvious answer – of course I want to be well. Sometimes when I ponder it though, even though I want it to be that simple, it isn’t.
Yes, I want to be healthy. I want to be able to drive myself places, go for long walks, not think about where the nearest chair, couch or bed is, have conversations without wondering when the other person will go so my tired brain and body can rest, spend time in my garden without feeling like fainting afterwards, dust off my kayak and rock climbing shoes, go on a holiday, and so many other things a healthy version of me could do. So yes, of course I want to be well.
But sometimes, when I’m truthful with myself, I realise there are aspects about being unwell that I’ve become used to. Safety blankets that I’m not entirely sure I’m ready to let go of, even if I could. I don’t have to go to work. I don’t have to get up super early, put on make up, sit on a train, spend a huge percentage of my life doing something I don’t care about all that much (I am extremely fortunate that B earns enough to support both of us). If there’s something on that I don’t want to go to I don’t have to – being unwell is both a legitimate excuse and a convenient one. Or I can leave things early – B and I have become something of a benchmark for others of how long it is acceptable to stay at something.
I don’t think things like this add up to not actually wanting to be well – but sometimes I wonder how much of a role they are playing in my subconscious. When I’m resistant to others suggestions of things I could try to get better, is it because I’m sick of suggestions of things that won’t work, from people who don’t really understand my condition? Or because I’ve already tried what they’re suggesting or something similar and it hasn’t worked, or has made things worse, and I’m just tired of ‘helpful’ suggestions? Or perhaps I’m resistant to ideas because I’ve become used to my comfort zone, and perhaps not all of me wants to change it.
I don’t know. I know that I do want to get better – but sometimes things are slightly more faceted and complex than they seem on the surface. Even though I believe the answer is, yes, of course I want to be well, I think it’s probably worth reflecting now and again on other possible answers.
Unrelated, but on the subject of Q&As, Robin Hobb, one of my favourite authors, did an AMA on reddit today. If you’re a fan of hers and missed it you can check it out here. If you haven’t heard of her and like books (and who doesn’t like books?), I highly recommend buying and reading all of hers (well, perhaps not the Soldier Son trilogy. But definitely all the rest!), and following her very entertaining facebook page. Robin and OfficeKat have bought a smile to my face on many occasions.
I haven’t been feeling very good today (physically or mentally) for various reasons, which I don’t particularly feel like writing about today. But, in the midst of not-feeling-very-good, two things happened that made me smile.
First, I checked the mail and had a surprise parcel from book depository (I hadn’t ordered anything). It turned out to be the book below, a bonus birthday surprise from my parents.
It adds to a lovely selection of birthday reading material – a massive new anthology, a fantasy novel I’ve wanted to read for a long time, a poetry book, and now a non-fiction adventure book (I guess that’s the category it would be in, although that doesn’t sound quite right).
Although I do now feel a little overwhelmed by reading material – I’ve written before about how ridiculously easily I get stressed and overwhelmed. Who would have guessed that a pile of books and magazines that I want to read, and have all the time in the world to read, would make me feel pressured? But there you go. Self imposed pressure leading to reading paralysis. I haven’t read anything today. I’ve played on my tablet a lot and watched tv, and done household bits and pieces. But it’s ok – I’ll get over it quickly enough and get back to being my usual book devouring self.
Anyway, the second good thing that made me smile was seeing this picture on facebook:
It’s charming isn’t it? There aren’t any spare wardrobes in my house to do this to, but one day perhaps I’ll have something like this. I do love my books – which currently live happily on ikea bookshelves in a room that I would like to tidy up one day. You know – that imaginary future day when things on the to do list actually get done.