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I’m not a big fan of diets, but here I am downloading the NHS diet plan and back to counting calories.

Julie has been in and out of hospital like a yoyo the last week, so our family life has been pretty chaotic. But as soon as she started to stabilise again, she declared that one of the things she wanted to do was lose weight.

Now in the aftermath of crisis Julie’s head is not in a good place. Dieting can seriously mess with your head at the best of times: all those obsessional routines about calorie counting, all that guilt when you “sin”. She’s already surveying the wreck that is her sixth form career after two months of chaos and trying to work out how to recover that. To diet as well: is that a good idea?

I figured the best thing would be to offer to be her diet buddy. I could do with losing a few pounds anyway, and by dieting alongside her I could offer her support and moderate some of the extremes of behaviour.

In fact it’s been quite fun. Its been a few years since I’ve looked at the world of dieting, and there are lots of apps and much better sources of advice. I insisted we try the NHS plan because it is moderate, and because Julie had already successfully used their running program last year. We printed out the star charts and put them on the fridge, as instructed, and signed up to a free calorie logging app which allows us to be “friends” and share information. There’s been a fair amount of giggling and “Did you know…?” conversations. It’s fun to work on a project together.

/home/wpcom/public_html/wp-content/blogs.dir/813/46462826/files/2014/12/img_0395.jpg I think I’ve got it pretty bad. I used to have it under control, but some days it’s pretty much all I can think about.

I’m talking about my lunchtime walk in the Botanic Gardens. Give me a sunny day, and woe betide anyone who tries to keep me in the office over lunchtime.

Today was particularly good. I took my new coat for a walk. There is a real child-like pleasure in wearing a new coat for the first time, on a sunny day, in such a beautiful garden.

I have to take my pleasures when I can. Julie is in and out of hospital. I need my walks in the sunshine more than ever.

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Necessity is the mother of invention. Julie is difficult to communicate with in crisis, and while she is in and out of hospital she has to communicate with lots of new people, some of whom seem to have their own agenda when it comes to helping her. Scratching my head, I hit on an idea that seems to work better than I expected. The Priority Game.

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When I tell people that Julie has gone back into hospital, they’re often very dismayed and shocked. I can understand that, though I wish I could explain that by the time an admission to hospital takes place, it comes as something of a relief to everyone concerned. The worst time is the time nobody else sees: the time immediately before admission, when the crisis is building, and we’re descending into chaos.

I try to keep normal life going as long as possible, even if it’s just going through the motions. This is because often we do pull back from the brink, and it’s easier to get back to normal if you’ve kept the engine running. So often Julie has hardly missed a day at college, and I’ve hardly missed a day at work, and nobody is any the wiser, even though the most appalling scenes are being enacted in our bathroom, and we’ve spent half the night in A&E.

But sometimes the crisis does gain the upper hand, and you find yourself going over the cliff edge. And actually once you’ve let go and committed to falling, free fall is quite a pleasant sensation. (Just as long as you don’t think too much about what’s going to happen at the bottom.). Just before you let go is a horrible feeling: everything is starting to disintegrate under the pressure, you miss out on sleep and exercise and eventually you know you’re losing. I know I’m feeling the strain when I start doing things I never normally do: putting my keys down in the wrong place and spending half an hour hunting for them, or snapping at someone at work. For a day or two, going to the hospital and letting somebody else take over the job of caring for Julie is a secret relief.

Of course hospital is not an easy solution and not a viable long term one. Acute psychiatric wards can be tough environments, even when they try to be comfortable and welcoming: impossible to disguise the amount of human suffering they contain. This is Julie’s first stay in an adult ward, and there are new norms and protocols to adjust to. Everyone seems so much older than her; everyone seems to smoke. Visiting there after a long day at work is a strain, and Julie is missing out on college. But they try to relieve distress, it’s a place of safety, and the initial plan is for her to come home again very soon.

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Still waiting for the results of my thyroid biopsy: I’m in a state of limbo. When the long awaited letter finally arrived, it gave no results, just invited me back to talk about them. This last week waiting for that return visit to the clinic is proving the hardest wait of all. I am very impatient. Everything is on hold: social engagements, holiday plans, work commitments.

It could still be positive or negative. The one good thing about a positive would be that it makes a better storyline. If you can say you have cancer, at least people will believe you when you say you feel pain. If it’s negative and there’s still no name for your pain, people don’t always believe you. We’re very simple animals at heart: we still like to see physical evidence, glowing brightly on a screen, or a number on a chart.

If you’re mentally ill, you don’t usually have the benefit of physical evidence. People don’t necessarily believe that you’re suffering: you may have to go to extreme lengths to persuade them that your illness is real.

Perhaps this is why some people place such emphasis on the cause of mental illness. It’s not that uncommon to find books or websites that assert that all mental illness is caused by trauma, often child abuse. Perhaps they don’t think the illness is real unless it can be traced back to some real external event.

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This week’s post is back on my old blog Julie’s Mum because it is much more directly relevant to that side of my life. To be honest, if Julie had never suffered from mental illness, I would never have believed that wards like the one she was admitted to even existed. Little specialist units like the one in which LB died are largely invisible, often unknown even to other services. And as we found, in these isolated pockets of the NHS, unhealthy practices can persist.

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So I am sitting in my office talking to a junior member of my team about his work record, which recently has not set the world on fire. Nigel has a string of woes: he doesn’t like where he lives, he finds the commute to work very tiring, and he has a perpetual cold. I feel quite sorry for him: Nigel should not be living alone really, he ought to be back at home with his mum.

In the middle of the conversation my mobile phone, which I have carefully placed on the desk beside me, rings. I apologise to Nigel and take the call briefly: it is my daughter Julie calling from hospital. Can she phone me back? I ask, I am in a meeting at the moment. I know that I can trust her to phone me back, I know that she is in safe hands, that the nurses will look after her. For a brief moment, the image of my daughter as I left her last night, lying in the hospital bed, looking quite green, having just thrown up violently into a little cardboard bowl, intrudes into my office life. I return to Nigel and his man-size box of tissues. Just for a moment I have the feeling that this is not quite the right thing to do, or the right place to be.

This must be Julie’s seventh or eighth overdose this year, I have lost count. This time she has ended up on a drip, meaning an overnight stay and vomiting. Sometimes it is a cut requiring stitches: recently it has often been both cuts and overdoses. Every now and then, someone in accident and emergency lovingly counts up the number of times she has attended, and sends them to her care coordinator. I am always astonished by the number of trips that she manages to clock up in a year.

It is nearly routine. She took this overdose at school so early that I had not even left for work: I was able to pick her up from school and drop her off at the hospital on my way in. For the rest of the day, I carried on almost as normal. Just a discrete call to her care coordinator from my car, and then putting her out of my mind, until I had time to deal with it later. Nobody at work had any idea that it was not simply another ordinary day.

But you never do really put it out of your mind. It is always with you. Every time it happens – and this is once every three or four weeks – your body has the same reaction. Both Joe and I have commented on it: that feeling of physical exhaustion, as if you were walking around with 10 kg weights suddenly strapped to both of your legs. This is even when there are no extra journeys to make, no wounds to bandage, no waiting rooms to endure, no phone calls to make. It is just a natural reaction: your body’s way of registering the blow.

Between incidents, she functions just fine. She is doing well at school, she has friends, she can take the bus into town on her own, she is talking about leaving home to go to university. Even while I was planning to visit her in hospital, a neighbour came in to tell me how wonderful it was to see Julie back to her old self. I could not bear to break the mood and tell my neighbour that I was packing her overnight bag because she would be spending the night in hospital. After all, she would be back again next day, and back to school again too. Nobody need even know. If you don’t look too hard, it looks as if nothing at all is wrong.

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O wad some Pow’r the giftie gie us
To see oursels as others see us!

This week I came up short against an unflattering image of myself. I am sure it is good for the soul, to meet your distorted twin occasionally, but probably best not to meet it too often. Apparently I am a pushy dominating mother. (Sometimes I beg the children to let me do a bit of pushing and dominating, but they never let me.)

One of the school staff has started mentoring Duncan – trying to help him cope with exam year. You have to remember that staff doing this are frequently giving up their (very rare) free time, because they honestly want to make a difference to students’ lives. But it’s no surprise to find that, untrained, they can drift into pop psychology. This is what happened here: Duncan told his mentor that he wanted to study Physics at [Scary University], and his mentor thought that very outlandish. How could a child – a child with his problematic school record – have dreamt up such an ambition on their own? It must come from the parents: “You don’t have to live your parents’ dreams, you know.” Throw in bits of gossip about Julie heard in the classroom, and the mentor was convinced he was on the right track: “You don’t have to get as good grades as your sister. The two of you don’t have to get good grades just because your mother expects it.”

(He probably doesn’t know much about Julie and her illness. He may know she has been in and out of school. Perhaps he believes she is just highly strung, made a bit anxious by pressure from mum. He likely doesn’t know about the hospital, the medication, the sadder reality of mental illness.)

Duncan wasn’t getting caught up in all this. He was cross with his mentor. “He doesn’t believe that it’s what I really want to do.” he said, “You’ve never pushed me into anything. I do want to get good grades and go to [Scary University]. I don’t secretly want to do something else: I just want someone to help me do this!”

As Duncan is the first to point out, from his perspective the real problem is that his parents haven’t been pushy enough. We never have bothered ourselves about his grades; we are convinced that his many good qualities will help him succeed in the end; and we think he should work out for himself what he wants to do in life. (In fact neither of us think much of this plan to apply to [Scary University], but it has to be his call.) Anyone who thinks we have been pushing him around doesn’t know Duncan: the last time I successfully pushed Duncan around he was in a buggy.

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The two words you dread to hear when you rely on mental health services: budget cuts.

It’s not as bad as all that: the specialist service that supports Julie at the moment will now give her two years of support, not three. I mull it over – trying to get used to the idea of a second transition so soon after the last one – before she even finishes school. I do feel dismayed: this team is so good, especially compared to what went before. This team specialise in treatment of psychosis: they understand it, they are not afraid of it, they are confident and encouraging. When Julie was treated by mainstream psychiatric services for young people, psychosis was not well understood: it was either ignored or suppressed with ever larger doses of antipsychotics. But this service teaches you to just get on with your life, take the psychosis in your stride, make the best of it, work out strategies to cope with the difficult bits, and take control of your own medication.

I am not quite sure when our two years are up (the transition into this service alone took nearly a year); I am afraid of what will come after; and I want to hide some of this fear from Julie. But then I start to wonder: how much of this is just good old fear of change? This service was never meant to be a permanent support: it was always meant to lead to independence. She is changing so rapidly, it is really possible that within a year she (and I) will have learnt all we needed to learn anyway. A year ago she was managing just an hour a day at school, could not be left on her own for twenty minutes, and I was terrified the school would give up on her again. Fast forward to this October, and she loves her sixth form, cycles there unaided, has fantastic support and is forming a new group of friends. Every day my daughter grows a little more before my very eyes.

I am bound to fear for Julie’s future. She suffers from a condition which is life-threatening, and also stigmatised; she takes several psychoactive drugs which have serious side-effects, some of which are also life-threatening; she has missed years of normal life. I know that she has to learn not just to navigate through adult life, but also to manage her illness, and I know there will be mistakes ahead. One day she will have to take control of her medication, and some day I am going to have to trust her to look after herself. The illness may eventually recede, but it may also have some nasty surprises in store for us. She may need extra support and care from us for years; she may make a partial recovery into a rather vulnerable adult; she may make a full recovery into independence. There is no way of knowing what she will have gone through by the time she reaches sixty.

But she is just at that stage of life – poised before the jump into adulthood – where there are always risks and fears, even for the strong, healthy and confident, who have never known more sorrow in life than their acne. No one does know what life is going to bring. Of course in an ideal world there would be a safety net of services to catch people like Julie if they fall – but if we cannot have that, then we will just have to make her as self-reliant as we can. Then trust to the kindness of the future.

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I do not have a post for this week. All my “writing” thoughts have been taken up with events unfolding on another blog: MyDaftLife, and by comparison with these nothing I could write about seems important enough. All my thoughts have been with the writer who lost her son, buried on Tuesday. I know Sara only from her blog, but from her writing I feel as if I have often spoken to her in person, laughed and cried with her, met her children.

All of us whose children’s lives have not been easy, whose children have had to spend time away being “cared” for by others, will recognize the pain of the last few months for Sara. Her son in hospital, her on the outside, gamely trying to keep it all together, despite the relentless grinding of the system. But the tragedy of his sudden death is beyond our words to describe.

It is astonishing that Sara has continued to blog for some time despite the immense pain she must be suffering at this time. It is our privilege to be allowed to read her words, and to witness her dignity and courage in grief. And through her writing, her son lives on.

"A NEW NORMAL" by Celenia Delsol (c) 2021

M.A. Counseling Psychology & Grief Recovery Specialist

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