Tag Archives: PTSD

To do…

Well, another school holidays are over and another all-too-short a break has been had. And I am more exhausted than ever.

I don’t know about you, but it’s only when I stop – if only briefly – that I ever have time to think about my life. And the outcome is almost always the same. I vow to change things. My life is complicated. I find it difficult, but I can’t change it, so I will do better. I’ll be more organised. I’ll fit in more ‘me time’. I’ll change the world while I’m at it, too … Of course, I never achieve any of these things.

This holiday has hit me harder than usual. I’m not entirely sure why. A combination of things most likely. I had to work a chunk of the Easter holidays and The Grumposaur was away with work for 10 days. Extra pairs of hands come in handy round here, and were missed, especially at the moment. You see, I have a really bad back. Carer’s back, the doctor called it. The bottom right side of my spine (around which is a huge muscle knot that won’t shift) is in agony without generous doses of co-codamol and ibuprofen. I have been assigned a lovely physio, who called my range of movement (which I thought good, ‘pretty appalling’) and who has given me exercises to do. Not lifting Boo – ‘the best piece of advice I could give you but I know you can’t take’, the physio said – is not an option.

Then there’s the fact that it’s been Easter. Easter’s hard for us. And the fact that this tricksy holiday moves around makes it harder still. The year Boo was born, it followed just days after his untimely arrival. On Easter Sunday 2012, we thought he would die of the infection that caused his brain injury. I will never forgive you for that, Easter, no matter how much chocolate arrives in the post. (I was never that fond of chocolate anyway). And this year I am crosser than ever that Easter made me wait three weeks after Boo’s birthday (a lovely but difficult day) until it came along to make me feel again the overwhelming fear I felt two years ago. Enough already.

And then there’s the fact that I have been forgetting things. This is really, really, really bothering me at the moment. Ever such a lot. I have forgotten to pay the Grumposaur’s credit card bill on time for two months in a row. It’s not that we didn’t have the money to pay it in full. We did. I just forgot and have the lovely overdue fees to pay for my stupidity.

I never used to forget things like this. I have – I mean, had – one of those brains where dates, numbers, birthdays etc. were all stored away and, as if I had Google Calendar in my head, I would get mental alerts about 3 days before I had to buy a card or pay a bill and that was that. Yes, I was that annoying. I used to annoy myself.

Not now, though. Now, I have a paper diary and a calendar and write myself a note once a week to update it, because otherwise I would forget to. I write myself post-its and send myself iPhone alerts to remind me to do the most mundane things. The day I have to send myself an alert at 6:45 to brush my teeth is not far away.

I haven’t forgotten everything, but it’s like the hard drive has been saturated with Boo files and there’s no more storage space and no disk drive to conjure additional memory. I can remember the dates of most of Boo’s many appointments for the next 3 months. Ask me when and where his 2-year review is in June and I can tell you. Ask me to tell you the number of paediatric physio (even though I have only ever rung it twice) and I can recite it backwards. But I forgot my best friend’s youngest daughter’s birthday in February. And I can’t remember what I have to prepare for the meeting I have at work tomorrow. Really, I can’t.

Frankly, this all makes me feel terrible. It makes me feel like a failure. A complete and utter failure. I don’t feel I can rely on myself any more. I feel as if my life is a mess.

I write to-do lists to help. They don’t. I wrote one out last night (after doing all the school admin I had left until the very last minute) and cried. I actually cried. Because none of it looks manageable to me at all. I have a long work list, with a couple of stressful and big projects that have to be completed imminently.

In order to do them, I need to declutter my brain a bit. But how? After all, there’s the Boo list. Gosh this is long. There are equipment and referrals I need to chase, and money that needs to be saved, info and long-overdue updates I need, not to mention the big long list of people to contact following Boo’s TAC meeting as we start researching schooling. And then I remember the therapy goals we have been set and remember that I haven’t done crawling with Boo for days, despite doing physio with him daily, and haven’t practised blowing for weeks. And Sissyboo has stuff going on, too, especially with a big dance show she’s doing in two weeks. On that to do list is a make-up purchase list (I know, it makes me feel sick too) so she can be seen under the theatre lights. She will have more make up than I have ever owned by the end of our shopping trip.

And there’s the house, of course. Paying those bills I can’t remember to pay any more, sorting out contents insurance and persuading people to put Boo’s adapted buggy on it, when wheelchair services finally tell me how much it’s worth. Just keeping on top of the tidying and cleaning (I so need a cleaner, please let me get a cleaner one day) not to mention the laundry post the Grumposaur’s case of Easter food poisoning feels like it’s beyond me.

The holidays are over and I want a break. From my life. That sounds awful, doesn’t it? But it’s true. It probably won’t be true tomorrow. If I’ve learned one thing since having Boo is that life and your attitudes to it can change rapidly, and just when you’re about to give up on something, things often turn around. And if my back gets better and I can run again, just to get that hour or so sanity saving break I need each week then I’m sure I’ll feel a whole lot happier.

But just in case things don’t change, maybe I’ll put ‘Take a break’ on my to do list. You never know. One day I might be able to tick it off that pesky list.

 

 

 

 

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Happy Anniversary

We’ve got some happy anniversaries coming up this year. My parents will be celebrating their 40th wedding anniversary next month, while The Grumposaur and I will have been together for two decades (!) in October.

But for the most part, since having Boo, anniversaries have left me in a cold sweat, panicky and a bundle of raw emotions that I can’t sort out. I’ve blogged about many of these days. The anniversary of Boo’s C-section date (10 weeks after he was born) prompted me to write the most read post on this blog to date. The anniversary of his due date (11 weeks after his birthday). The anniversary of the day he came home. A good day. And then much later the anniversary of the onset of his epilepsy. Indeed this whole blog started because I needed to come to terms with an anniversary: his first birthday. It was a lovely day and a very difficult one. A day to celebrate him, but also to come to terms with the challenges he faces and all that will likely never be.

People tell me it gets easier with time. But they also tell me that the bittersweet nature of many premmie anniversaries never quite goes away.

This year I wouldn’t say I’m more prepared for things. Who knows how or what I’ll feel this time around. But as I enter anniversary season this year, I am at least prepared to be unprepared. And I vow to try (because frankly, I am not very good at this) to be kind to myself and let myself off the hook if things get tough. If I need to cry. Or get cross. Or go and sit in a room on my own for 10 minutes.

Last year anniversary season started for me with Mother’s Day. I remembered so vividly that I could taste and smell the same day the year before. It was a day when I had finally started to look properly pregnant but still had months to go before my son’s birth. When we enjoyed a family day trip to Brighton. A day of excitement, of looking forward to a life that wouldn’t look as we’d expected when it eventually came just days (not months) later.

This year the season’s started earlier. Because this time last year I ran a half marathon. For Boo. For the charity Bliss. I know I did it. I have the pictures and medal to prove it. I ran 13.1 miles in 2 hours 11 minutes. I still can’t imagine how. Our lives were frankly horrendous back then. I was severely depressed, acutely sleep deprived. Boo’s epilepsy and repeated hospitalisations put a massive dent in training that was vital for me, a non-runner all my life. Heck, I was still breastfeeding.

Boo got me to the end of that run. His determination and mine for him. My gratitude to Bliss kept one foot in front of the other. My gratitude to those who had sponsored me ensured thekept moving. I wept buckets when I crossed the finish line. It was one of the hardest things I have ever done.

And now I am training for another half marathon in September. And the memories of last year are flooding back.  Of how tough things were. I have re-experienced the same dry mouth and damp palms as I ran back to our front door, hoping that my beautiful sleeping Boo (I almost always have to run at night) had not had a seizure while I was out and his Dad was looking after him.

I don’t like feeling that way again. It’s hard. So hard.

But those moments are fleeting. Mostly on my runs now I hear my daughter cheering me on at 10 miles and see my Dad’s tears. I feel good that I did that run in adverse circumstances. That I raised so much money.

And above all, I feel grateful that now is not then. I like to put a positive spin on things on the blog, but I’m always truthful. I would be a liar if I said life was easy. It’s bloody impossible some days. But it’s also very good and so much better than I could have hoped it would be this time last year. OK, Boo’s still not sitting for long, rolling or standing. But the gut wrenching fear is no longer the signature note of our lives. He is well. He is still seizure free. He is happy and thriving according to his own schedule.

Like all of the anniversaries we’ve had since Boo’s birth, this one has brought mixed emotions. But the good far outweighs the bad. I hope this is the way of things to come as we plunge into the season of remembering. If not, well I promise not to beat myself up about it.

When Did I Become that Person?

Twelve months ago, things were pretty bad. We were still months away from a cerebral palsy diagnosis (although we knew deep down that that was coming) but we were six weeks post-diagnosis for the infantile spasms Boo had developed. Our already fragile world was cracking before our eyes. The aggressive steroid course had worked, thank God, but Boo got horrific insomnia and so neither of us had slept for months. He had also become unrecognisable as the medication turned him into a bloated, moon-faced, cartoon-like version of himself. And my happy, beautiful determined boy had turned into a little monster, fighting the physical and emotional irritability the tablets induced.

As I’ve documented on the blog many times, I nearly lost my mind. I was severely depressed and had terrible panic attacks. Boo couldn’t flinch without my breathing stopping or my heart racing. Was this another seizure? Were they coming back? Would he regress further?

I remember taking Boo to a physio appointment in early February 2013 (the first we’d had since being released from hospital after the seizure treatment) where I broke down in front of our lovely physio. I hadn’t remembered driving to the hospital that morning. I was so tired that I could barely string a sentence together.

The physio stopped the appointment before it had started. Instead of asking me and Boo to show what he was up to as usual, she sat me down and spent the best part of an hour talking through what help I might need to access and who we might turn to for support. She emphasised how much I needed to look after myself, how I wasn’t going to be able to help Boo or his big sister if I allowed myself to collapse. I had to find solutions to make life more bearable. I left the appointment with a different kind of to-do list than I normally have. Instead of exercises, I had people to phone or email. Appointments to make for me. I felt horribly guilty that I had selfishly squandered Boo’s precious appointment. But I knew she was right. I had to find a way through this.

Twelve months on and things are very different. We had a physio appointment this Monday (we see the physio every two weeks). It was a good one. OK, Boo still isn’t doing things that a year ago I nightly pleaded to any god who would listen that he might, like sitting independently or rolling and crawling. But you know, that’s OK. He has made huge progress. And it’s all about the inchstones, not milestones, around here now. We spent a lot of time in the appointment on Monday laughing and joking and focusing on the good. On how far Boo has come.

Just before we left the appointment, the physio asked me a question: ‘I’ve got another Mum whose recently started seeing me with her little one. They don’t have a diagnosis yet, but cerebral palsy has been mentioned and it seems very likely the diagnosis will come with time. She really needs someone to talk to, someone who’s more used to all this and can give practical and emotional support. She’s not in a good place. Can I give her your mobile number?’ Without hesitating I said ‘Yes, of course’.

As I left the hospital, I started to wonder about this person, like I wonder about people who read this blog sometimes and the comments they leave or search term traces that appear on my stats page. I wished I had her number so I could call her now. And then I started to wonder how I had become the person the physio evidently thought I was. After all, only twelve months ago I was the one desperately needing help and struggling to come to terms with things. I was the one the professionals were worried about. Not Boo. And now, they think I’m someone who might be able to help others because I’ve overcome those hurdles. Because I’m in a much better place.

Really? The possibility stopped me in my tracks.

Of course, I’m not a different person. I am still the same thirty-something woman who sobbed her heart out to her son’s physio and pleaded for help. I still worry furiously about Boo. My horizon of expectation has shifted massively, yes, but I still hope deep down that all major cognitive and physical milestones are his for the taking, in his own way. I still think a crystal ball would be handy, so we can plan for whatever is ahead. And I still get afraid about the economic, emotional and physical challenges Boo will face as he grows up and how all of this affects his lovely big sister.

But I rarely feel the soul-rending desperation any more that nearly caused me to have a breakdown a year ago. In fact, I feel a great deal of hope now. I laugh a lot.

I don’t have all the answers, though. I have so much to learn and do learn so much from all the lovely folks I’ve met on Facebook and Twitter and through this blog. And yet I still mess up. I still get floored by things, often without any warning. I’m still me, it seems.

But the more I think about it, I suppose there is one big difference between the me of twelve months ago and the me now. I have to fight a lot for Boo: fight for support and services he is entitled to, fight prejudice and ignorance, policy, procedure and bureaucracy. It is exhausting and a more-than part-time job. But I rarely fight this life any more.

Acceptance is an easy word to trot out and a very hard thing to achieve, in my experience. I’m also not sure it’s the right word for me. I’m just not sure I accept our life, frankly. For one thing, ‘accept’ is a bit too passive a word for my liking. But I have accommodated myself to this life, for sure. It’s mine, for better or worse, and although it’s hard, the rewards are enormous.

So, maybe I have moved on, after all. I hope she phones. I hope I can help.

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Happy and Good News Year (Good News Friday #38-39)

imageThis is the longest I’ve gone without blogging since I started Premmeditations back in April. And to be honest, it’s felt odd. Not exactly like losing a limb, but like losing touch with a good friend through the accidents of life.

Time to reconnect. And what better way to do this by picking up where I left off? With Good News Friday. OK it’s not Friday but that’s how we roll in Boo Land. If there’s one thing I’ve learned since having Boo, it’s that time isn’t linear or necessarily moving in one direction, despite what the calendar and physics say.

So the good news since my last Good News Year post is this:

We made it!

If you follow the blog or read my sometimes anxious ramblings on Twitter, you’ll know that December was a cruel month. By Christmas I felt utterly broken. It’s hard to say exactly what did it. Months of juggling appointments, therapies and work played a part. Lack of sleep, still a major problem here, was surely another. Fear about new pressures at work from January were lurking in the back of my mind. But I think it was whatever this particular brand of PTSD, reactive depression or anxiety (take your pick) I have that was the indigestible icing on the unpalatable cake. I just couldn’t shake the irrational fear that Boo’s infantile spasms would mark their one-year anniversary by returning on Christmas Eve. I found it hard to believe Christmas wouldn’t involve repeated hospitalisations again and be spoiled completely. Last year started so badly and things didn’t improve for many months. I was frightened that I couldn’t cope if this happened again. I was running on empty.

So I did something I rarely do. I gave in to the holidays. I took nearly two weeks off with minimal work. And as the days went by I stopped crossing my fingers and holding my breath.

Because we made it. No seizures. No hospitalisations.

No Christmas in Boo Land is normal by most people’s standards. No life that involves daily physio, speech therapy, gaiters and standing frames could be that, but it was ours and we loved it. Most of all the kids loved it.

There has been a slight sting in the tail. Boo is unwell (has been for 5 days) with a virus and high fever and his already bad sleep is bordering on the appalling. But somehow, despite all of this, being together, having quality time together as a family with other family and friends, and (and I suspect this is probably more important than I’d like to admit) cutting myself some slack and letting myself of the hook has been restorative.

In December I was, frankly, a wreck. In January I feel fit to be back on the road again. Sure there are still bits of my life that are precariously held together by duct tape, but I’m hoping they won’t fall off any time soon.

I am apprehensive about the return to normality: the 6 (yes: 6!) appointments Boo has next week and the late nights catching up with missed hours at work. But normal also means getting back to Premmeditations. She’s a new friend, but a good ‘un and I’ve missed her and her lovely readers.

Happy New Year!

Mummy Interrupted

Today I should be finishing up work for Christmas (well, sort of – I have lots of work-related reading to do by the beginning of January, but not too much). I should be excited about getting Sissyboo at 13.30 as she finishes school for the term. I should be looking forward to a Christmas together all four of us, hopefully without the dramas and hospitalisations that ruined the last one. I should be writing Good News Friday. 

Instead, I  am sat here waiting for a consultant to call me back, writing a blog post, crying my eyes out and with a dry mouth and shaking legs. I am having a 4th panic attack in 3 days and I am miserable and scared.

The cause? I don’t quite know for sure. I have been having a hard time all December as we approach the anniversary of the onset of Boo’s infantile spasms. This anniversary is proving at least as tough as his birthday and due date anniversary. In fact, it’s much worse as I remember that the spasms can come back or morph into another form of epilepsy that can undo all the work we’ve done on his cognitive and physical development. That can take me back to the brink of severe depression and acute anxiety that made life so difficult between January and May. I am always in a state of alert. Now, I’m in a state of hyper-vigilant panic. 

The fear is crippling. I can’t talk or think about anything else. I am a wreck. I had started to feel better a week or so ago and thought I was coming out the other side of this mental health blip. But then two nights ago Boo started uncontrollably screaming and writhing while we were trying to get him to fall asleep. 

Bedtimes are never happy occasions in this house. Boo has fought sleep and his contorted body that he can’t move as he’d like to since birth. But this is different. He is writhing and screaming for a good hour or so as we hold and comfort him. We can distract him by giving up or showing him a toy but the minute we try to settle him again, his legs start coming up abruptly into a frog-like position and back straight again and the high-pitched screaming returns. I don’t know if the legs are caused by the crying/distress or vice versa.

I live in fear the spasms have returned.

I should say that what Boo is doing at bedtime looks nothing like the spasms he experienced almost exactly a year ago. He had those only on waking. They were a rhythmic jerking movement from stomach to head. What I am talking about now only happens when he is falling asleep (although that is a common time for IS to occur) and he is pulling up him legs to his tummy (not a particularly common seizure presentation as I understand it). There is no stomach movement, no eye movement, no regular rhythm. He is not returning to normal between movements. He is just plain angry and incessantly moving. Am I being paranoid?

I think I am. He may just be teething. He has had two teeth coming through for weeks (you can feel the point of one under the gum.) He and teething get on about as well as he and sleep. No teething experience he’s had so far has been pleasant for any of us.

Then there’s the fact that I am in a state of high stress (not helped by the OT breaking Boo’s long-awaited Bee seat yesterday when she came to do a review – and the Jenx factory is now closed for weeks for Christmas, or the fact I feel I am very behind with my work and so many other things). I realise that I am probably making the ‘evidence’ fit the scenario my disordered mind has conjured.

I keep saying to myself that it is no more likely his seizures will return this Christmas as next March or never. It’s just a date. But I can’t shed the fear. Even though my instinct is that this is nothing serious. (That was not my instinct with the spasms – I knew what they were even when no one around me would believe me until they saw the EEG results.) 

Perhaps the consultant will call me back. Perhaps he will put my mind at rest. I have never wanted to be perceived as a bothersome, paranoid parent more in my life.

I want things to get back to normal. Our normal is not most people’s, though I know it is so much better than many others’, but it is ours and we can deal with it. 

And I so want everything to be OK. Two nights ago, Sissyboo was crying when she remembered that Mummy and Boo spent most of last Christmas in hospital. She begged us to promise it wouldn’t happen this year. We said we were as sure as we could be that it wouldn’t happen again. But we can’t promise anything, can we?

Please let this be a blip. Please let the seizures stay at bay. Please let this Christmas be a healthy and hospital-free one. We would all gladly send all our presents back if we knew this could be true.

 

Home straight. I Wish…

Two weeks to go. Two weeks until I get 11 days off for Christmas. And despite being nervous about Christmas (an irrational PTSD-like fear of a repeat of last festive season’s new diagnoses and hospitalisations), I can’t wait. I want to spend time with my family and not working or in appointments. I want to kick back.

I am utterly exhausted.

Nearly there. Sure, there’s a mountain of stuff to do before then (cards, Christmas shopping, deciding what to cook to entertain guests for Christmas lunch) a million things at school, a stack of work so high I can’t think about it without feeling sick. But only two weeks to go. I must be on the home straight. Right?

Wrong.

How can you be on the home straight when home is never straight forward?

Today I have been to two medical appointments for Boo. SALT (or speech and language for those not as thoroughly institutionalised as me) and physiotherapy. I left the house at 08:30. I got back at 11:55 after dropping him off at nursery. I hadn’t eaten at all today, or drunk or peed since 06:30 this morning.

I left the appointments with lots of homework (apps to locate and download, products to source, photos and captions to write for nursery) and a tonne of guilt about all the things I haven’t done with him or helped him achieve. That’s a post for another day this week, but in short SALT makes me feel like I have let Boo down in the area that as his mum, as someone who works in education, as an avid lover of words, I should have helped him most: communication. Boo’s comprehension about transport was tested today. Could he find the train, the boat, the helicopter? No. And you know why? Because it dawned on me that he doesn’t play with trains, boats and helicopters. Because he only plays with toys that are physio and sensory friendly. That he can actually hold. Because I have cared more about trying to help him reach and grab and get trunk support so that one day he might sit than to widen his vocabulary, despite talking to him constantly. I have never told him what a train is or shown him a helicopter. I feel rotten. I am a bad mum.

And I am a bad working mum. Because today I am or should be at work. OK I worked 3 hours last night because I knew I had appointments this morning, but I didn’t know I would get home and open the washing machine door and flood the kitchen because it has broken for the third time in 2 months. And now I have 2 hours before Sissyboo’s drama club Christmas show and I should be working as hard as I can now in the hopes I don’t have to work from 19:30 until 2:00 again. In the hopes that I might actually get some sleep.

But instead I am writing a blog post. Because I feel things are about as far from straight or straightforward as they could be and maybe writing about it will clear my head. Because I feel that life is unbearably hard sometimes. Even impossible. Most days I can cope, but today I can’t. Today I just want to sleep for 2 weeks and for Christmas to happen with or without me.

But I can’t do that, can I? I need to be more like Boo. To not give up. To keep on at things just like he did through two difficult appointments this morning.

I am tired, but I am also the grown-up. I have to keep going.

Onwards!

Depression, black dogs and other animals

Before I went away in holiday I wrote a post about how I was going to take a bit of a blogging break. My plans to get posts written in advance and scheduled failed due to lack of time and too many commitments and I hadn’t planned to invite guest posts. But I was going to write a weekly Good News Friday update, keep up with my Play Agenda posts. I promised you. I promised myself.

None of that happened. None, I tell you!

Instead of the class hamster, the blog turned into an itch I couldn’t stop scratching. I clearly need it much more than I am able to admit to myself and I used it to work through some of the things that happened while we were away: the stares, the tensions in Boo Land. The tensions got a bit much, though, and when I sat down to write the first Good News Friday I just cried. So I abandoned that (and the next post) when the fabulous Orli from Just Breathe offered a guest post that put my holiday blues into perspective and gave me a good laugh.

It would all be alright when I got home, I thought. I’d get my equilibrium back and my blogging mojo. I would write up two weeks’ worth of Good News Friday, get up to date, get posts done for linkys and sort my life out.

Have you realised yet that my favourite hobby is setting myself unrealistic goals?

Instead, I hit a metaphorical brick wall. The day before we left Devon I felt as if oxygen was leaving the room. The air felt heavy as heavy as my heart. I didn’t want to stay on holiday forever. I missed lots of things about being at home. But I didn’t miss lots of things about my life. The ongoing battle to get the top of the Social Services and Health OT lists to get seating for Boo and hope he doesn’t develop scoliosis. The anxious wait for his diagnosis (two months and counting since the tests). The endless therapies. The juggling…The exhaustion…

Depression and his old pal anxiety, They taunted me with their predictability. Laughed in my face as they watched me inwardly crumble. I barely remember the journey home and I spent most of the weekend feeling like I was suffocating. I couldn’t write. I couldn’t think.

Winston Churchill famously referred to the bouts of depression he lived with as a black dog. I get the metaphor (the darkness, the constant perching at your heels), but it doesn’t feel right for me. I guess it’s partly because I like dogs so much, black white or any colour you fancy. I find their companionship consolatory.

Maybe I’ve just spent too much time in Devonshire pubs, but I think of my depression more as the Exmoor Beast. Dark and predatory.

What depression looks like

Or maybe, more like the hound of the Baskervilles. You know. You’re walking home one night in the countryside minding your own business and then find yourself walking through the Grimpen Mire when a ferocious dark beast with a green tinge comes out of nowhere and tries to eat you. No: that’s not right either. Sherlock Holmes can’t rescue me. And the hound is only part real, part phantom (a dog someone has starved and painted to look like a spectre).

My depression is not a phantom. It’s very real. And while it feels slightly odd to say so, it’s not man-made. To my mind, it’s a perfectly natural response to 18 months of stress, of prematurity, meningitis, of wondering if your baby is going to die, of repeated hospitalisations, of epilepsy, of brain damage and cerebral palsy, of fighting your child’s corner, of struggling to get the right care, of only 15 nights of unbroken 6 hours sleep in 18 months. Yes: I am counting.

Actually, I’m not sure I have the right metaphor for my depression. I’m not even wholly sure what my particular mental health issues are (depression – yes – but PTSD has been mooted several times and I check most of the boxes, and anxiety is certainly a huge part of it). More to the point, though, I don’t know if I need a metaphor. I understand my depression and part of me really doesn’t want to anthropomorphize it. It really isn’t like an animal or a beast. It’s more like an element: a hurricane, a tidal wave or stormy sky.

And like the weather, things change and clear just when you think they never will. I don’t know how I got through this weekend. I don’t remember unpacking or doing five loads of laundry or doing Boo’s physio, although I know all of these things happened. And then it was Monday and I started working on my massive to do lists and all of a sudden, I felt OK again. I wasn’t paralysed any more. I started to get on with things. I felt better.

I don’t know what changed. I don’t think it was anything I did or any of the pep talks I gave myself, I just felt better. And now I am writing this post and getting on with the work I need to do and inching closer to seating solutions for Boo and getting on with our life.

And although life is hard I can see its beauty. Even when the clouds are dark as anything, I can still see that.