Monday, 30 July 2007

A postcard from...

I have just been away with my son for our first summer holiday in three years.
It's all thanks to the rain holding off, my mum's excellent driving, and some careful forward planning.
We stayed in a cottage on a farm in Shropshire for three days. Now, to be plonked in a cottage in the hills without my mum or a car would have left us somewhat stranded.
But knowing I was as good as I was going to be healthwise, and that the forecast wasn't too bad, we decided to go for it. I was so desperate to achieve my aim of a few days away with my son, but dared not write about it until now, firstly because I didn't know if I'd be well enough to go, and secondly because the weather really did threaten the whole expedition.
In the end the floods receded and we were able to enjoy Shropshire at its best, which is truly a joy considering it's been so long. Summer can be a particularly hard time of year for people coping with ill health. My anguish in past years at missing out on seeing my son enjoy summer made it worse. So this break was very special.
Planning is pretty important when you go on holiday with either children or a chronic illness, and I somehow managed to pick out a couple of excursions that kept everyone happy.

A vintage train ride. It rained on the way but the sun and all the local wildlife came out for the return trip. Kestrels, buzzards, hares, rabbits, pheasants...none of which I could photograph as I only have a compact and you need proper lenses for wildlife. But it meant I just watched my son enjoy himself.

A trip to a castle. I phoned ahead, organised disabled access at an easier entrance (the gardens are terraced, which no amount of legislation can really help) sat in a cafe and managed to get around the gardens at the lower level. The staff were very helpful and for a fairly inaccessible castle (which, come to think of it, is how they were designed to be) we all had a very good afternoon out.

My son loved the farm. He wants us to get some chickens. I want to live in Shropshire on a farm with chickens, but it's a bit too hilly to be entirely practical.
Since returning on Saturday my head has been filled with beautiful scenery. Tired but very, very happy. It's just what we all needed after a difficult few months.

Sunday, 22 July 2007

Sumer Is Icumen In

As the years roll by summer is getting easier.
So far we haven't had the heatwave that knocked me about last year, but I've had my seasonal blip, brought on by having become disabled one summer not so long ago.
I found the first 'anniversary' unbearable. There's a date, a time, a place to remember. I hadn't remotely come to terms with it all and there was a great sense of loss of freedom.
I bitterly mourned the fact I couldn't go on holiday, and of course because I was so depressed memories of family holidays (both happy and not so happy) plagued me.
I knew that parties and barbeques were happening but the noise levels alone meant I couldn't (and still can't) be there with my friends.
I had what I called 'freedom dreams' about enjoying summer before I became ill.
Ready to give me a slap? No need. Like I said, it is getting easier. With some revised attitudes:

  • Do not presume that everyone else in the whole world is having a fantastic time. This will only make you feel worse.

  • If you can't embrace summer, at least invite it in occasionally.

  • This summer I have just completed an art course, which has proved to be the best treatment so far provided by the NHS. I have various paints and pastels around the house.
    I am also massively into photography, for those who hadn't noticed :-)
    My relationship didn't survive, but having survived a deep depression my love for my son fires my will not just to live but to create and thrive.
    This year I am hoping to stay in a cottage close to home for a few days with my mum and son. I am hoping we can make it through the floods, nevermind heatwaves.
    I will not allow those ghosts of summers past to haunt me. Therapy helps me work through what I can't help but relive at times. Art, photography and writing provide the creative outlets that I see as essential to anyone who needs to heal. And music. But only in small doses.
    I will nurture friendships new and old and thank God that I am alive.
    I am alive. And when I say alive, I mean my inner core is alive. There's a long way to go yet, but getting into the rhythm of living again is providing the forward momentum that was absent for so long.
    Sumer is icumen in, perhaps.

    Saturday, 21 July 2007

    Random Facts

    This has been a welcome distraction as I have been trying to sort out a prescription error and it's doing my head in.

    Thank you Jemma, cusp and MarmiteBoy for tagging me. Here goes with my incredibly random facts. First, the rules:

    Let others know who tagged you
    Players start with 8 random facts about themselves
    Those who are tagged should post these rules and their 8 random facts
    Players should tag 8 other people and tell them they've been tagged.

    Eight Random Facts About Seahorse

    1. I wanted to be an air hostess when I was a child. It was because I flew Swiss Air to France on my own aged ten and was spoiled rotten by one. We did a jigsaw, made pictures and a potentially terrifying experience for one so young became really exciting. I only realised later on that it wasn't the job for me. I just liked being looked after. I can't remember if I got the same treatment on the return flight. I suppose the novelty had worn off by then and I considered myself a seasoned air traveller.

    2. I have a tooth just under my cheekbone. It's only detectable by x-ray.

    3. I briefly studied music at university but couldn't see myself doing it professionally. I just didn't have the discipline. So I went on to do English and Classics, choosing Classics because it was everything in translation that I'd studied for Latin 'A' level. Still not much discipline in evidence... I enjoyed the studying I did do, but I didn't retain much of what I crammed for my exams the night before. I remember the entire year group being told by a disillusioned Classics lecturer "Just go home and watch Jason and the Argonauts."

    4. I have saved both my son and my ex from choking to death, my ex on the occasion of my meeting his parents for the first time. The Heimlich manoeuvre is not to be underestimated. As is not stuffing too much food into your mouth in one go.

    5. I was once part of a band who supported a nascent Primal Scream in a dreadful pub in Newport. They wouldn't lend us their amp when ours blew up. Bobbie Gillespie was preening himself in the ladie's bogs (it had a mirror) and I threw him out. I can't remember much else from the pub, but our guitarist threw up out of the minibus window on the way home, splattering puke into the Welsh wind. Halfway up the motorway, I realised I'd left my violin in the pub. We had to go back. Everyone was really cross with me.

    6. If I eat a bag of crisps, I have to fold the empty packet into a triangle. I have done this with every packet I have eaten since the age of about 20. I know someone now living in Australia who also does this.

    7. My dearly departed Dad went to school with Bill Oddie (UK comedian turned nature presenter) who, legend has it, diverted all the traffic from a nearby major trunk road up the school drive and through the grounds using some police cones he just happened to find.

    8. In the past week I have taken up a new hobby. But more of that another time.

    I now get to tag eight bloggers in turn. I am mindful that I chose to spend a bit of time immersed in what Sage succinctly describes as 'self-absorbed crap'. The following are under no obligation to do so themselves:

    Attila The Mom , Mark, Astrid, Tokah, Lorraine, Paula, S. and never that easy

    Friday, 20 July 2007


    We all need to be. And we all need to do, and sometimes not do if it doesn't suit us, we don't want to or can't for reasons of ill health.
    Dobedobedo is where I'm at right now. I do, rest, I be. I do, rest, I be. Then I do, and tend to carry on til I'm silly with exhaustion and flop into a lovely bath.
    But that's how the routine round here is at the moment. Must put in another rest after tea before bed. Tedious but it works, and sometimes means I can watch something nice on telly with my son, or perhaps a DVD, that doesn't involve me disappearing under a mountain of tissues.
    The point I'm trying to extricate from this waffle is this.
    In coming to terms with disability, and getting one's head around a longterm state of fluctuating health where the goalposts shift and you're never really sure how you are from month to month, I've learned the following.
    We all need to do, to a certain amount. Doing makes us feel part of things, vital, alive. Not doing can deaden the spirit. But doing a little, and doing things differently is the big improvement to my life that has taken me so long to work out.
    I pace, I can do more. I tentatively start writing, it becomes a blog. I buy a camera, I now have a hobby. I paint, badly. I watch films, I cry. I watch nature documentaries, I marvel. I pass by the piano, and sit down to tinkle. Yesterday I wrote a bit of a Tori variation on an old classic. The piano works better for me at the moment than CDs. I am in charge. It's my expression, my emotion coming out, not others' emotion coming at me.
    All these things help me reclaim the me that psychiatric services stole. And they did steal me away, stuff me full of drugs and then...well it's not been very pretty.
    Being is just as important as doing. Fluttertongue wrote beautifully about it here. It's about not doing. Being is stopping, for some meditating, but for me just stopping, breathing, lying still, no stimuli. It is a wonderful experience. I love listening to the rain. These precious moments.

    Tuesday, 17 July 2007

    Black Friday

    For a long time after becoming ill I wasn’t any good at all at handling things when things became unbelievably bad.
    Then for a while I seemed to be coping better.
    Friday was a very bad day. A day of utter despair and overwhelming depression. It hit me like a lead boxing glove when I woke up, continued to build as the day dragged on and by bedtime had become unbearable.
    There are times when I slip back. Stressful events tend to bring on emotional instability, to use a detached, somewhat medical observation. I felt badly shaken after my latest social services assessment last Thursday because it felt so intrusive. I became afraid I would lose my son.
    But on reflection it’s not so much what happens in life as how you react to it, and deal with it. This is quite basic therapy stuff.
    How you react to a stressful event. How you deal with fearful imaginings. And how you deal with both your emotions and the responses of others.
    A lot of what I deal with is the fallout from trauma and I sometimes have to manage very difficult emotional states. Having a therapist and an Emergency Plan stops me spinning totally out of control.
    I called the Samaritans on Friday night because I needed trained, objective, sensible support. And compassion. I didn’t need to whip a friend up into a worried, bewildered state. And a friend didn’t need that either.
    My Emergency Plan is the same every time. It hasn’t been used for quite a while, but it goes:

    Camomile Tea

    If it’s been a particularly bad one, I make a nest in my bed with pillows. And I have a cushion that you heat in the microwave and can sprinkle essential oils on. That helps a lot. It’s the warmth and scent that is so comforting.
    The calm after the storm brings the recognition that I place a huge expectation on myself to be dealing better with a great deal of pressure. I have the self-control not to completely break down when my son is in the house. When he isn’t here is when I tend to let go.
    My reaction to Thursday’s assessment was all about how I felt, not how it actually was. It wasn’t great, it was exhausting and it made me feel ill. But I have plenty of therapy under my belt telling me that at my stage of recovery, these emotional reactions are to be expected and dealt with the best way I can.

    Wednesday, 11 July 2007

    Piano Man

    We have just won a secondhand duet stool on ebay. This means I will be able to finally get around to teaching my son piano.
    I have to first get back the incredibly good but very strict piano tuner who last tuned it 18 months ago. He left with prophecies of doom should we not tune it again within two months. Eek. But he knew what he was talking about.
    Since we moved house the piano has been located in a far more accessible place than where it used to languish in an unused dining room.
    The results have been interesting. It does sound a bit better. Very pub up the top end, but the tuner will sort that, after muttering more about neglect and very sensitive instruments and all that stuff.
    My son has taught himself an entire Keane song and the entire James Bond theme, no music, no prompting. I have chosen to let him get on with it, no interfering. It's how my parents got me convinced I wanted to learn.
    My theory is, let kids really enjoy working out an instrument before you pile on in with lessons.
    I laughed out loud in the bath the other night as our neighbour, a bit partial to some gentle electric guitar twanging of an evening, started playing the Bond theme.
    It was either subliminal or deliberate, but whatever, it really did make me laugh.
    My son's rhythm is impeccable (much better than twangey man)his phrasing intuitive and so I'm really looking forward to introducing him to using all his fingers, two thumbs, and seeing what happens when I join in. And if the neighbour joins in too it'll be a right session.

    Sunday, 8 July 2007

    My Live Earth

    I took a brief walk. I had to get out.

    It hurt, but not as much as the assault on my senses from the television. I didn't have to watch any of it, hell I don't watch TV normally, unless it's about the environment... so I was curious to see how it was going, how the message was being put out. I'm so naive.

    What message? An inane backstage chat with Duran Duran trailed on for five minutes with no mention at all of the environment. Just soundbites about turning up and doing their bit. God, it could have been a clip from any one of the increasing number of Global Humanitarian Happenings.

    Cut to Jonathan Ross being sarky, Graham Norton simpering and looking a bit lost. Keane being too keen. Spinal Tap utterly wasted (if only they had been, entertaining though they were). Enrique Iglesias filming himself on fans' mobiles.

    I didn't stick it out for Madonna. Why should I? The realisation that I am bigger than Madonna made me feel good. It's not that difficult, being bigger than her.

    But even switching off the TV didn't seem to rid me of the imprint left by a succession of posturing enviro-celebs. That's why I had to go outside. You see, it was so much worse than I could ever have imagined. I didn't even imagine it would be all that bad.

    Slightly patronising maybe, but possibly worth all those Lear jets, helicopters, cars and tour buses, all the lighting, noise and pollution. It so completely wasn't. It was horrible. And I only saw about ten minutes in total. Enough was enough.

    So out I went into the evening light as old Madge was doing her make-up and squeezing into her catsuit. And just around the corner from my mum's, in a little patch of suburban park that the council mowers forgot, I found My Live Earth.

    Wednesday, 4 July 2007

    A warm glow of satisfaction

    This is a very quick post to say I was delighted to receive notification from my advocate yesterday that letters have been sent on my behalf to the agencies failing to look after my needs.
    They have been told in no uncertain terms to get their respective acts together, or else. Signed, A Solicitor.
    Which may make them sit up a bit more than my infrequent attempts at encouraging a response, any response.