Oscar is Twelve

It is six in the morning. I seem to be good at waking at this time, perched up here in the mountains of Cyprus. The sun is rising and the sky is full of soft pinks and blues. It’s going to be a beautiful day.

Of course it is. It’s your birthday, Oscar. What better way of celebrating it? This, sun drenched, golden day will be your first as a birthday. October babies don’t really get this opportunity at home.

You are 12. In high school, tall as the clouds, peach fuzz moustache, feet like boats, deep brown voice, clumsy as a moon calf. Hard to know what to do with all those limbs, I know.

You can’t sit on my knee any more. Well you can, but it’s not neat like it used to be. When I get a hug now, I am engulfed, peering out from a tangle of limbs. That day has already come when you absent-mindlessly drop kisses on the top of my head as you stride by. I’m pleased I still get them though.

It’s hard to see the baby you once were for the man you’re going to be, but he’s there in small flashes. Peeping out, reminding me of birthdays past.

I love you, boy of my heart. You’re gentle and clumsy and sweet. You’re thoughtful and funny and daft as a brush. As tall as one now too.

We will have a family birthday when we get home. In the meantime make the most of your sunshine day. I predict Fruit Mentos, quad bikes, beaches and lots of ice cream in your future. It’s going to be a good one.

Holiday Niceness

We go away on holiday tomorrow. Tilly will mind the house and Derek. Granny is minding the kittens and grandad. We fly out to Cyprus for a fortnight. This was to be our second honeymoon, after our second wedding. The wedding didn’t happen, but we figured we deserved the honeymoon.

It feels like we haven’t been on holiday in a million years.  At the moment, each week takes about a hundred years to pass whilst simultaneously flying by at light speed, so that’s probably right. We are due.

I have loaded tonnes of books onto my Kindle. I’m taking two actual books as well, just in case. I hate the thought of being without. I’m taking the David Sedaris diaries and the new Cormoran Strike in paper form. I’ve loaded the latest Kate Atkinson, the newest Rebus, several random things from the Kindle sale and some things I got to review from Netgalley. If I don’t get eyestrain by the end of the holiday it won’t be for want of trying.

I’ve been doing more reviewing recently. I took a break over the summer, but I’ve just tucked away a book called Eggshells by Catriona Lally (Eleanor Oliphantish but better), which I absolutely loved. Shortly after I read it, she won some big prize for it, so I think we can say that was my influence working already.  I read a book about a woman’s peripatetic travels through the icy realms called The Library of Ice by Nancy Campbell. It took a while for me to get into this, but it really started to draw my interest after a while and towards the end I positively hoovered it up. This evening I read Matilda by Roald Dahl, but with the new covers.  I love the covers, still love the book, but secretly wished that they had tacked on a new chapter at the end of each one to give more flesh to the idea of her careers. It was nice to re-read it again though, particularly after all these years. These were all from Netgalley. Everything except Library of Ice is already published. Library of Ice is available for pre-order.

In non review reading I read Matt Haig’s Notes on a Nervous Planet. I enjoyed it. Not as much as Reasons to Stay Alive but it was still good. I think Reasons to Stay Alive really resonated because I could connect with so much of it, whereas at times I found myself anxious while reading Notes on a Nervous Planet. I don’t need to be any more anxious than I already am, so I struggled with it. I’d like to read it again when I’m less hatstand. I also read the Lily Allen, My Thoughts Exactly, which I polished off in two days. I love a celebrity memoir.

I may be considerably slower with my reading this year, but what I lack in speed I am making up for in eclecticism.

I’ve been reading some good books and I’ve been watching some excellent telly.  Killing Eve was fantastic, I’ve binge watched the entire back catalogue of No Offence, which is marvellous. I’m not going to be able to watch the end of series three, because I’m on holiday, so no spoilers please. I’ve been binge watching The Good Place and am nearly caught up with that too. I also absolutely loved the new Dr. Who, to the point where I got incredibly emotional and it made me cry.

I went to my last art class on Friday.  I am sad that it is my last one, and I shall be booking on to the next course as soon as possible. Tilly has invited me to come to a life drawing class she goes to on a Wednesday. I am shockingly bad at drawing, worse than I am at painting, so we will see. I might love it anyway, or it might make me snap my pencils in rage. I shall think about whether I am feeling brave enough while I am away.

Today I went to an event, run by my wonderful friend Alexia Elliot. I met Alexia years and years ago when some of you may remember, I was making a total drama about passing my driving test.  Alexia was the brave soul who took me through hypnotherapy and was largely responsible for me passing.  I bumped into her again last year when I needed someone to help calm me down before surgery.  This course, called ‘How to Love Yourself’ was a one day workshop where, amongst other things, we looked at The Hero’s Journey in relation to being kind to ourselves. I’m going to take all my findings and thoughts away with me to help me make sense of things, and then I might write some more about it. It was good to focus on self care,  I already know that.  It seemed a good way to preface a holiday.

I hope we will have WiFi when we’re away. I love relaxing, but I also need to run my EBay empire and find out what my friends are doing while I’m away. I may also need to post some shots of me forking feta cheese into my face on Instagram. All the important stuff.

 

Worry

When your child is ill it’s really hard to stop worrying about them. It’s what you’re programmed to do. You look for ways to fix them, to make it better, and when you can’t, you worry. That’s how it is.

To be honest, it’s really hard to stop worrying about them even when they’re not ill.

I can see how worry is good in some situations. I mean, if you didn’t worry you might not remember to do things like take your child to the doctor, or make it wear a coat, or pick it up from school.  Worry can be very motivating.

On the other hand, it isn’t very helpful to wake up at 3.00 a.m. in a cold sweat because you’ve been having dreams about getting them to an appointment that isn’t for another five days.  It isn’t very helpful to worry about them all the time, even when you’re in a situation where you’ve done the best you can, and there really isn’t anything else left to do, but you’re still running three thousand unlikely scenarios at midnight so you can’t even get to sleep to have that worry dream about them to wake you up at 3.00 a.m.

When Tilly was born, I worried all the time. I mean, all the time. I remember a friend coming to visit. She said: ‘Well, at least your maternal instinct has kicked in. I’d be hopeless with kids.’ I looked at her like she was insane. I had no maternal instinct. I was operating on blind panic and mild delirium from lack of sleep. I spent most of my time staggering around with my boobs out, weeping. I had no clue. None at all. Every day we ended up still alive I would be wildly relieved and mystified as to how that had happened. We got through it. Things became a bit easier. I learned how flexible I could be when pushed to my limits.

In the last few months I have felt like this again at times. Some days I have been consumed with worry. I have fretted myself to flinders. I have felt bewildered and overwhelmed and frantic. I have worried about what happened for us to get here. I have worried about what will happen now. I have worried about what will happen in the future. I have panicked.

And that’s terrifying, and exhausting and boring. And also, largely pointless. Because if there’s one thing that raising children has taught me it’s that the things you worry about are rarely things that happen, and if you waste all your energy panicking about things that aren’t going to happen, you won’t have the energy to do the needful when the things you never dreamed would be a problem start to loom. And even if something you do worry about happens, worrying about it won’t make it easier to deal with when it does.

The other thing that worry stops you doing, is enjoying what you can. Life’s been pretty brutal in recent months, but it’s not been all bad. In fact, there have been some wonderful times amidst the grimness. If I gave in to my worry, I’d miss those, and that would be a real shame.  All we ever have is now. It helps if we can make it the best now we can, under the circumstances.

I’m not naturally full of joie de vivre. I’m a worrier by nature. It’s not always easy to stop those thoughts and fears, but experience has taught me that it’s generally better when I do, so I practice.

Sometimes that involves shouting at my inner voice to ‘shut the fuck up.’ Sometimes it involves a large glass of Malbec.  Sometimes it involves binge watching telly, or laughing at internet memes. Sometimes I do vigorous dancing to terrible Eighties pop music.  Sometimes I manage a chapter of my book. It just depends.

Sometimes I allow myself to have half an hour of concentrated worrying and then I bin it off. Sometimes someone I love lets me talk at them. These talks involve a lot of the words ‘what if this happens?’ and a fair amount of weeping and nose blowing. Then they’re allowed to say ‘what if it doesn’t?’ But only if they offer me a cuppa and are far enough away for me not to hit them for being annoying.

Sometimes I console myself with the fact that very, very many times in my life I have been wrong. I have been wrong about some of the most important things in my life, and always to my benefit. Sometimes it’s really reassuring to be wrong.

 

CAMHS and MHS Support Group Update

I created the group I was talking about in my last post.  It’s for everyone who is in need of support while looking after someone going through either CAMHS or adult mental health services.

If you would like to join the group, you can search CAMHS and Mental Health Services Support Group on Facebook, or access the link here.

I don’t believe in a lot of rules. There are enough things to remember every day without that. I do however, believe in kindness.  So that’s the watchword if you’d like to join.

Everyone’s experience is unique to them. Everyone deserves to be listened to. Everyone in the group is as important as everyone else.  I have made it a group rather than a page, so that we can, hopefully, form a proper community.

At the moment there are only two or three of us posting and commenting. That’s not because we’re the best ones, it’s because everyone can post/comment/lurk/read according to what they’re most comfortable with.  Obviously it would be great if you joined and felt like jumping in from the get go, but not everyone does, and that’s absolutely fine.  Do what works best for you.

I posted this update, earlier today. It gets to the heart of how I hope we can use the group going forwards:

Many years ago I married a man who was an alcoholic. After 12 months of being married he started to get sober using a 12 step programme. I found it incredibly difficult to live with him while he was getting sober, and I had problems of my own to deal with. I ended up going to an Al-Anon meeting. For those of you who are not aware of this programme. Al-Anon is a partner fellowship which works to support families and partners of those with alcohol addiction (and other addictions actually. It’s a broad church). It uses the same twelve steps as AA but with relation to co-dependency.

It saved me, and my marriage (for the next nine years). It taught me self care, compassion and how to put the focus back on me, while still being able to love and support someone in crisis. It has been the bedrock of how I have been able to cope with a teen with mental health needs.

There were a few things that really stuck out for me about those meetings that I wanted to highlight for this group. Firstly that not everyone talked about their addict or their relationship with the addict. In fact, what made me finally go was losing a baby, and not having anywhere else to take my feelings of grief. I was able to share my experiences, get things off my chest and find enough peace to process what I needed.

The group is there for you, not you as a shadow of the person who brought you there in the first place.

Secondly, it was the first place I had ever gone where I felt genuinely listened to. There are only a few rules to the groups, but one is that when someone is speaking, they hold the floor and nobody can interrupt. Similarly they ask that nobody gives anyone else advice or feedback other than thanks during the meeting. The space is for you, and you can say whatever you want without fear of judgement.

Thirdly it was the first place I had ever gone in a therapeutic sense where I didn’t feel broken and that I needed someone to fix me. Because of the support, the listening, the safe, confidential nature of the space, I could say what I wanted, knowing it was ok, and that was when I first started to realise that I would be ok.

I’d like this space to be like that for everyone here. I can’t wave a magic wand and make it ok for you to trust this space or  feel good about sharing, but I can offer it. I can suggest that if you want to just post about your feelings and you don’t want anyone to comment or offer advice, to please say so in the post and we will respect that. I can let you all know that every single one of us is doing the best we can right now, and that’s good enough for today.

I’d ask that you please respect the confidentiality of the group members, if you do decide to join.  I’m perfectly happy blurting my business all over the internet, but not everyone is, and nor should they have to be. There is also the added issue that it is important to respect the confidentiality of those people we care for too.

I hope you come, and I hope you find comfort. Actually, my biggest hope is that you never need to come, but if you do, the door is open.

 

 

 

CAMHS Feedback

Good things have been happening this week. I’m going to tell you all about them later. Right now I need to write about some less good things, because they’re haunting my headspace and that’s not very helpful.

As you know, I am the parent of a CAMHS user (Children and Adolescent Mental Health Services). Long term readers may also know that I am on the Patient Panel for my local paper. We are a body of volunteers with all kinds of expertise in all kinds of areas to do with local health and well-being. We try to bridge the gap between what’s going on in the NHS and what’s going on for patients locally.

My expertise is getting up in the faces of the powers that be, swearing violently in meetings and listening to patients about what matters to them. I can also talk about vaginas without panicking. This comes in handy more times than you might expect.

This week there was a meeting advertised to users of CAMHS and their families/carers. I can’t remember how it came to my attention now. PPI events (Patient and Public Involvement) are, by and large a joke. They are extremely poorly advertised to people who might want to attend, take place at times that are inconvenient to anyone with an actual, real life, and usually involve you having to register in some way so that some kind of filtering can happen.  They will tell you that it is to do with health and safety and numbers of people allowed in a room at any given time.  This is only partially true. Generally there is some kind of overarching agenda which has very little to do with patients, and everything to do with box ticking and making sure that whatever projects are in the works comply with the need to engage with patients.

I sound cynical. I am.  I have attended more of these meetings in the last five years than any person wanting to cling on to their sanity should. You’d think I’d have learned by now. The issue of course, is that if you want to talk to anyone within the system at all, you have to show that you have at least tried to follow their labyrinthine and hierarchical processes so that when you finally lose patience you can point to the mile wide path of good intentioned meetings you have attended and letters you have written behind you.

I decided to go to this meeting. It was billed as a chance for families and ‘service users’ (or people as I like to call them) to give feedback.  For once I had nice things to say, so I thought I’d go in the hope that I wasn’t the only one, and because it’s just as important to give good feedback as it is to give bad.  I also went on behalf of several CAMHS families who couldn’t go, because of course, it was scheduled to start at 5.00 p.m. on  a work day.

I am sorry to say that it lived up to my very low expectations, and at times went down from there. I would say that there were about 20/25 of us there in all, alongside a significant staff presence. The agenda was pre-determined by the meeting co-ordinator who wanted us to focus on four key areas that her team were interested in.  We were told that if we wanted to share our feedback/concerns, we could write on the table cloths (I don’t even), or on post it notes which they would collate after the meeting. We were told that there might be some time to feed back after we had done the exercises they had planned around the four areas. There wasn’t.

It was the most despairing, unhappy meeting I’ve sat through in the last five years of advocacy and campaigning work in the NHS. There was literally no hope I could detect that anything would get better or anything would be done. The saddest thing was, despite that, people were trying. They were tired, angry, tearful and desperate, but they were trying so hard to do what was right, and it was absolutely heart breaking.

It was one of the cruellest meetings I’ve been to. Many of the families there were desperate to share their experiences, and they just kept getting shut down.  There were two instances that really stuck out for me. Firstly when we were with a chap trying to elicit information about the journey of a child with ADHD/ASD. How cruel to ask about a journey most of the people in the room hadn’t even started yet.

Some of the women I heard, had been waiting 18 months, being passed from pillar to post. How are they supposed to know what that ‘journey’ looks like? The second incident involved the woman facilitating a discussion on what a new discharge form might look like, repeatedly talking over the woman who was in floods of tears about her experiences to ask her what she thought of the word ‘discharge’. I was so pissed off, in the end I just said: ‘I think it sounds like vaginas.’

I told you being able to say vagina in public without crumbling was a skill.

We were asked about digital content, which in itself is pretty farcical. Why ask a load of middle aged people how they think young people are going to get on with digital content, or what digital content they want to see? I’d put a pound to a penny that barely anyone in that room knew the difference between Snapchat and WhatsApp or that most people under the age of fifteen wouldn’t be seen dead with a Facebook account because it’s so last year. Leaving people like us in charge of edgy projects ends up with my daughter having to sit through sex education videos called Shagging in the Sheds, which bears about as much relation to modern day sexuality as a fucking penny farthing does to Bradley Wiggins’ bike.

Let me be clear. The really heart breaking thing about these meetings is that by and large the staff are doing the best they can, within the limited remit they can operate in. They were not being cruel on purpose. There is no money. There is not enough staff. There is not going to be any more money, or any more staff. I am in awe of the fact that the front line clinicians who were there, deal with this heartbreak day in, day out, and don’t go mad themselves. There were good people in that room, who were being forced by circumstances to do a hateful job. They can’t ask what’s really up, because they already know, and they can’t do anything other than what they’re already doing, and if they did do something, they’d probably lose their jobs, and what little they can do to make this intolerable situation less awful, would be taken away from them.

Nobody wins here.

I came out the meeting and sat in my car for a long, long time feeling grateful and guilty and angry and sad.  I had hoped my experience might not be the exception to the rule. I had hoped I wasn’t the only one. It appears I am.

I have, in my limited capacity, fed back to the powers that be that I felt that the event could have been organised better. That’s not enough.

I have decided to set up a parents/families/carers support group online, for anyone who needs somewhere to share their experiences of CAMHS or other mental health services.

It will be confidential. It will not solve any problems, it will not inject cash into services or train staff, but it will be somewhere you can go where someone who cares will listen to you, who will, if only for a few, short moments, share the gigantic burden and responsibility of what caring for someone with mental health problems is like.

It will be about you, for you, because you need a break sometimes too.

I will put the virtual kettle on, break out the virtual Hobnobs, and lend a sympathetic ear. If you fancy joining me, I’ll let you know when I’m ready to open up the doors.  It will be on Facebook, where all the middle aged people like me hang out. I’ll keep you posted.

 

 

 

 

 

 

 

 

 

Nice Things

I’ve been meaning to write a cheery blog post ever since I got back from my weekend away in Wales, and now here we are with nearly a week gone by, and no cheer.  That needs to be rectified, so it is definitely a case of better late than never.

My weekend away was blissful. Absolutely blissful.  We hit the road on Friday afternoon just as traffic was starting to build. As we were in no particular rush, we set the sat nav to ‘highways and byways’ and pootled along lanes, through villages with bizarre names and countryside straight out of a picture book. It was rather like driving out of the 21st century into medieval England. The late afternoon light, the laden orchards, the trees turning out their Autumn splendour made it just perfect, and we were already feeling holidayish by the time we arrived.

We stayed in a place called Clyro, a mile from Hay on Wye, in a complex of converted barns, farm buildings and grain silos.  Our silo was rather aptly called The Wheat Silo. It was absolutely perfect for what we wanted, which was peace and quiet.  The bedroom, bathroom and kitchen were all on the ground floor, and the top half of the building was one, large, round lounge. We had a sofa each and a glorious triptych of windows looking out across the Welsh hills to entertain us.

On Friday evening we stumbled by accident across a restaurant called St. John’s in Hay. It turns out that it’s Trip Advisor’s number one choice for top nosh in Hay. We had no idea when we rocked up there, and we were really lucky that as we arrived, a couple were leaving, and we slotted neatly into the only table left in the place. We ate the most glorious steak and chips I’ve had in years, with a crisp, green salad which was interesting and properly dressed. I also had a glass of splendid rose, fruity and crisp and absolutely perfect. It was simple, but exquisite, which is high praise indeed. I’d eat there again in a heartbeat.  I highly recommend you visit if you get the chance, but it’s small and only opens on Friday and Saturday, so you would need to book, unless you were lucky, like we were.

Saturday involved a fry up at the Blue Boar pub, which was recommended by the staff at St John’s. I had the veggie option and it was delicious. After carb loading, we set off to explore.  The weather was dreary and rainy and there weren’t many people about, which suited us down to the ground. We spent the morning browsing the frankly delightful shops unbothered by man nor beast.

Hay is one of those places that seems to have all the needful things in one small town. Obviously there are lots of book shops, but there are also art galleries, a proper stationers’, a beautiful cookware shop, and a whole host of other, independent shops that sell beautiful things you never knew you needed. I bought some of them.

In the afternoon we went back to our silo and read our books and napped.  We went out for curry in the evening. We thought about a takeaway but that would have involved washing up, so we went out, but only for long enough to wolf down food, and then we hot footed it back to the silo for more pyjama/book/snooze action.

Sunday morning saw us breakfasting at Booths’ bookshop. It’s a huge, sprawling place with a fabulous mix of old and new books, a top notch cafe and their own cinema. The food is amazingly good. I had Portobello mushrooms in devilled cream sauce with sour dough toast, a fried egg and two rashers of crispy bacon on top. It was heavenly. We couldn’t leave without buying a few books, which we took back to the silo and read until the evening when we slowly wended our way home.

Everything was perfect. It felt like we’d been away for about a year. I felt refreshed and re-charged, which was good, as the first couple of days back proved a little tricky and had I not had reserves to fall back on I think I definitely would have run away.

On the whole, however, the week has continued in a holidayish theme for me. I managed to get my hair dyed by Jenn, and instead of dirty blonde with two inch roots I am now pale pink and lilac, which is much more the thing. I have had an afternoon of massage from my amazing friend, Lynn, who ironed out some of the more persistent knots in my neck and shoulders. I’ve been to the cinema with Oscar to see The House With the Clock in Its Walls, because sometimes we like to have a mum and Oscar date.  I’ve been to see Crazy Rich Asians with Jenn and Kim because sometimes we like to run away in the afternoon and see films when everyone else is busy. It feels so decadent.

I’ve also been to my second art class with Kim.  We are doing watercolour painting with a lovely lady called Helen, who is very calm and relaxed and doesn’t believe in mistakes. I am not very good, but I am thoroughly enjoying my two hours a week, mucking about with paint.  It made me feel that I might have made some progress in life after all when I found myself not being worried about whether what I was doing was right or not, but simply enjoying making something because I could. It’s only taken me until I’m 46.

The stabilisers are coming off

It’s been a better day today. Almost a normal day. They are so alien now, normal activities. It feels like taking the training wheels off your bike and trying not to wobble too much. Hoping you can stay on till you get to the corner.

Our world changed in July this year. For her, it started happening months before. We had seen glimpses of it, but not the whole thing, not until a few days before her birthday when everything she had been hiding suddenly showed itself and everything else fell apart.

This process we have been through, are still going through, has turned all our lives upside down to a greater or lesser extent. As things improve we are gradually learning to right things again, piece by piece, moment by moment. It’s frightening how quickly you become acclimatised to living with something like this, and how weird your old life seems, and how strange it is to go back to it.

Of course, you can never go back to it. Not like it was.

Almost certainly that is a good thing. If something goes this wrong it means that it is better faced, better challenged and changed than suppressed or denied, by everyone involved. And once you know how things are, you can’t unknow. Things have to change and they need to change. The change is better. For us it’s better. Hopefully for her, too, but it isn’t easy.

I’ve had some experience with this kind of thing before, living with what is essentially an addiction.  The crunch comes, usually when the person experiencing the problem hits what some people call rock bottom. It’s not a phrase I’m keen on.  It’s far too concrete a definition for what is a rather nebulous process.

A better definition for me, is that the person has reached that point when the pain of doing what it is they are doing to themselves is so terrible, that it is greater than the fear of changing it. Having said that, both are terrifying. Changing doesn’t seem like a good thing, even though your rational mind might say it is, because you are so afraid, all the time.  The thing about an addiction is that it is something you think you are in control of, that you understand the rules of, because you made it for yourself. Everyone else might see it as something dangerous, but a lot of the time, the only place you feel safe, is inside the confines of your disease. You have no idea what the changes you are putting in place will do to you, and where you’ll end up, and that’s scary.

I think that one of the biggest difficulties with this is that there is choice. With a true rock bottom there is no choice. It’s easy to go up when there’s no way to go down.  It’s not easy at all when you could still keep going down, and you have to work to choose up. That’s what’s so painful to do and to watch others do.  And once you change one thing, you have to change everything until the world is made new for you, and you start all over again, and that’s tough.

One of the things I have thought to myself, time and time again this summer is how much this process for me has resembled having a new baby again. It’s the same terror of doing something wrong, inadvertently damaging such a fragile creature with my clumsy behaviour. The constant hope that there will be something to guide you in your absolute cluelessness. Of course there are books and professionals, and they are valuable to an extent, but there are those nights when it is just you and your baby and you are locked together in something only you can share and no diagram or top tip will help you then. You just have to keep on, knowing that this terrible moment will end and maybe the next moment won’t be quite so terrible and hoping that you’ll hang on until the next time and maybe next time you won’t be quite so clueless or so frightened.  It’s the same pacing at nights hoping she’s sleeping and not dead.  It’s the same worry that she won’t hurt herself. It’s the same sitting up for hours, soothing and calming and talking distracting nonsense. It’s the same figuring out the language of this just like I had to figure out the language of her when she first arrived.

And now she’s stronger and more independent again I am having to figure out how to let go what I held on to so tightly all over again. I’m having to figure out how to trust again. I’m having to work on believing that when she tells me it’s ok, it really is.  I’m having to practice trusting that she isn’t going to slide, that we’re not going back to that terrible moment when the world came crashing down again.

And of course, we aren’t, because we can’t, because the world is different now, but it doesn’t make it any easier. Trust isn’t something you can smash to the ground and just magic whole again. It comes with patience and practice and work, and while it’s taking its sweet time, it makes those first few days without the stabilisers that bit more scary, but she’s doing it and so can I.