Addiction

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.

The Priority Game

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.

Place of Safety

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.

Business as Usual

Somethings never change. Five days after my thyroid op, I am healing up well but still a bit to go. But home comes Julie from school today, self harms yet again and has to be packed off to hospital for stitching. I must have done a good job at hiding my feebleness from her then 🙂

I have taken to writing more about these incidents back on my JuliesMum blog (today’s is here). I am not sure why I feel the need to separate out these two parts of my life: I suppose I am vaguely aware that not everyone relishes the (often rather gory) details. My JuliesMum blog is often read (or used to be read) by many people who have their own struggles with mental illness, who are neither surprised nor repelled by news from the roller coaster, but who may not have heard the tale from a carer’s perspective before.

It is hard for Julie at the moment, with exams looming and me out of action. I was a little harsh on her when I packed her off to the hospital, frustrated by being unable to change anything, but I am truly sorry she feels so bad. Let’s hope she feels stronger soon.

Too Fast!

You should be careful what you wish for. Told that I had to have an operation to remove part of my thyroid, I was frustrated to find that I would have to wait for some unknown period of time. I was warned that it would take two or three weeks for a letter to arrive from the surgeon, then an appointment to meet them, then the operation itself at some undefined date. Clearly there was no urgency in my case, but the wheels of the NHS did seem to grind exceedingly slow. In the meantime, so many things – work, holiday, friends – were piling up because I didn’t have the faintest idea when to expect my operation.

Sure enough the letter finally arrived, telling me to phone for an appointment. I phoned and phoned and left messages, but the number was not manned, and no one phoned me back. I did some research: it was the right number, but the department chronically understaffed. The letter said that I must phone within 7 days, and this time had almost run out: did that mean I might lose my place?

It was all quite stressful, and in the middle of it, Julie had a crisis, ended up in hospital again with an overdose, and for a couple of days I didn’t have time to keep chasing.

Finally, remembering that my company pays for private healthcare (of which I disapprove), I checked that I would be covered, and contacted the surgeon’s private secretary. Success! She picked up the phone immediately and within 10 minutes I had arranged to meet the surgeon in his private clinic in 2 weeks time. I sat back on my heels, astonished. Eat dust NHS.

But it was only when she phoned back later to check some detail, that I realised I had misunderstood. The appointment was not to meet the surgeon, but for the operation itself.

I was aghast! Now things are moving too quickly! I don’t feel ready to go under the knife so soon. And it feels positively indecent to have this surgeon cut into me without so much as meeting me first. By the time he sees me for the first time I will be unconscious. All the energy I had expended fretting about the wait now went into anxiety about the undue speed!

Of course I will go ahead in two weeks if I can: it is too convenient not to. Getting it out of the way will improve the outcome medically, get it finished before the children’s exams, let me recover in time for my holiday, and many many other benefits. I will just have to learn to live with my abandoned principles and my squeamishness.

However there is one sting in the tail: the operation can only proceed in two weeks if my notes are promptly passed from the NHS to the private hospital. And of course that means relying on the department secretaries who are too overworked to even pick up the phone 😦

Conversations

So I went to the clinic as planned and had a conversation about the biopsy results on my thyroid gland. Waiting for that conversation was by far the scariest part of the process: far worse than the conversation itself! I was spooked by the word cancer. And it really bugged me that they knew the results but wouldn’t post them to me or tell me over the phone: I felt at a disadvantage walking into that room, as the only person who didn’t yet know the test results. I wanted all the information as soon as it was available, not filtered and interpreted.

But the conversation itself was very straightforward and satisfactory. Nobody knows if I have cancer: the test didn’t give a simple yes or no. My thyroid is Schrodingers Cat: without further tests, I both do and don’t have cancer. The only way of finding out is to open the box: go ahead with the operation and remove part of the thyroid. (Which is exactly what I want to do anyway because it is so painful and uncomfortable.). The conversation passed the test: something will be done, I will probably feel better as a result, and I will not be left in limbo. As to the possibilities of cancer – openly discussed – I was given good answers to all my questions. The fear receded, the bogey man exposed in this case as a relatively weak opponent, known, named and oft defeated by medical science. If he is present at all, of course. (Such a weak opponent, in fact, that I will have to wait some months for the operation – which is a kind of reassurance, even though it is so hard to wait.)

This was the first of many conversations I must now have: with my husband, friends, colleagues, children, each of which will need their own version of the story. The conversation with Julie was one I particularly feared, knowing how raw she is after her illness, how easily something like this could feed into deep fears of abandonment. I felt that all this talk about cancer was unnecessary: if this word had spooked me, how much more it would spook her! So I left it firmly outside the door of the conversation: just said that I needed an operation to relieve my obvious pain and discomfort. Perfectly true, and probably the whole truth. But even the mere thought of me going into hospital did trouble her, and I had to agree to her telling her support team so that she can have extra support. Nothing can ever be private.

Failures of Inpatient Care

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.

The Daily Grind

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.

Companions

I have been ill and in some ways being ill simplifies things. It becomes easier to say no, even when the demand is very pressing. It becomes easier to sit still and listen and watch the world go by.

I spent a day in the local hospital having some tests, and sitting there on the ward to which I was temporarily assigned, I watched the other patients; perhaps eight of us in all. The other patients were all very elderly, very frail, living from one moment to the next: a typical general emergency NHS ward. By comparison with these older patients I was young and, apart from this temporary suffering, generally in good health; I was fit enough to walk from the ward down the long hospital corridors to each of my various scans and tests without the indignity of a chair. I knew I would get home that night; most of my companions did not know exactly when they would see their homes again. I was not frightened by my condition: I was confident that whatever it was would be resolved somehow in one way or another. In all honesty I was enjoying the chance to be alone, to endure my pain in relative comfort without the constant demands of family. I was a tourist in this world of sickness, but the other patients, they all seemed to be natives.

Some of my companions had attendants, husbands or children, sitting patiently beside them, translating their needs, their vague discontents, to the nurses. Occasionally, voices raised for elderly ears, rang out across the ward: “She’s just going to take your temperature, Mum!” Some of the carers were elderly themselves, but they sat on on their hard chairs, holding hands with their particular old lady, sometimes chatting to the other patients, smiles and pleasantries lobbed tactfully between beds, conversations about the weather and the food. Staff flitted from bed to bed, fetching, soothing, attentive. Time passed slowly. The woman in the next bed offered me the lemonade which she, alas, could not drink. At the end of the day I was free to leave, and I left, slightly reluctant, slightly relieved to go.

The very next day I was back in the hospital and now I was the carer, the presence beside the bed. My daughter Julie had cut her leg again, deeply, needing stitches. She had been unsettled by my long absence at the hospital the day before. She was confused and disoriented, reciting the words from the notices on the walls. Her voices had told her to cut, and now they were telling her not to talk to us, it seemed. I translated her needs to the nurses, her vague discontents. I felt happier being on this side of the equation: not the subject of the conversation but from the safe “objective” perspective of the well; on the side of the nurses. After all these years of practice I can explain what my daughter needs with great precision. I had found it so much harder to explain what I myself needed when I was the one lying on the bed. But my daughter is quite at home on the bed: the world of sickness is her adoptive country.

Time Heals

It is a year, a whole year, since Julie had to spend a night in hospital. She remained a day patient right up until a few months ago, but for the last 12 months she has slept in her own bed, and has not slept at the hospital.

How resilient the young are! Julie was surprised when I pointed this anniversary out to her: surprised and a little dismissive. She has already forgotten her shuttling, nomadic existence last spring when weeks at home would be interspersed with weeks back inside the hospital. She has forgotten the monotonous journeys, the charts, the meetings, the phone calls, forgotten the tiny triumphs of leaving the safety of the hospital for a night, and the disappointment of having to return to it, temporarily beaten.

Thank goodness she has forgotten! And I, though I remember more, am fast forgetting how it felt: I have almost forgotten, for example, the particular gut-wrenching dread of the phone that rang in the middle of the night. Much of the anxiety, fear and anger is fading fast away. I bump into staff who treated her in those two horrible years of hospital care, and I no longer try to avoid them – I can greet them with an open welcoming face. (Well most of them: those that were kind and meant well.)

Some things are harder to erase, and perhaps erasure is not what we want. There are some things that maybe we should occasionally remember, if we are ever to move on from them, to exorcise them. Going further back in time, to the year before the last one, Julie spent a year entirely in hospital with rare visits home; and this was a very dark period. There are things we sometimes bring out and roll around between us, Julie and I, delicately dissecting them, exploring them like a tongue a missing tooth. We cannot make sense of them alone because neither of us knew completely what was happening. She tells me in pieces her experiences, the staff, the other patients, I tell her some of what the doctors told me, what it felt like on the outside, how I loved her and missed her.

But we bring these memories out only when we want to now; they do not hijack our days and intrude where we do not want them. Not this week for sure, when there is more to celebrate: because we are about to go away on our first family holiday in three years! We tried and failed repeatedly to arrange holidays during those years, but Julie’s illness (and the hospital’s response to it) was too unpredictable: there would be another crisis, another change of hospital leave policy, a sudden change of medication. Now she is free, and we are free, to travel as a family again.