Steady is good.

The latest news. 

I've had a fairly rocky few weeks on the mental health front, mostly thanks to lack of sleep. I don't know whether sleep deprivation has caused me to have a bumpy ride, or whether the lack of sleep is a symptom in itself, but it's been horrible. It's no fun being wide awake at 3 or 4am night after night after night. I tried all the usual home remedies, tried sleeping tablets and so on, but nothing seemed to work. 

Finally I saw my psychiatrist and he added a new medication, mirtazapine, into my already sizeable pharmaceutical diet. He said it would make me feel sleepy if I take it at night. I'm hoping it'll help, though it's probably a bit early to tell. Fingers crossed. 

The boys went for their regular kidney check ups last week. Things are ok, but unfortunately Joe's kidneys are struggling now, despite the medication he's on. This is in line with what's expected with Alport Syndrome, but that doesn't make it any easier. Thankfully Joe's very pragmatic and says because he feels well in himself, he doesn't worry too much. I'm glad he doesn't worry; it's hard enough to be 16 and about to sit your GCSEs without serious illness thrown into the mix. The doctor wants to increase his medication and with any luck this will protect his kidneys for a good few more years. 

Evan's doing really well on the kidney front, he's lucky enough to have escaped the medication regime so far. He's being closely monitored and for now, he's fine without it. Both boys are very deaf, but their hearing aids are fantastic and adjustments are made at school to help. They are lucky enough to have a fantastic teacher of the deaf, although I'm not sure whether this will continue once Joe goes into sixth form. 

Joe did his mock GCSEs a few weeks ago and got some fantastic results. We have a parents evening for Evan this Thursday and we honestly don't know what to expect because he hardly tells us anything that goes on at school. He's definitely the strong, silent type (a bit like his Dad!) I do worry about him, though he tells me that things are 'fine.' It's a tricky one, he's a 14 year old boy, he's shy and he's autistic. I never know which of these things is involved when he struggles to communicate with us. I just try to let him know that I'm here for him, whatever he has going on. Overall he's quite a contented person, I think. He loves films, playing the drums and the Xbox. 

Practical matters are fairly steady, which is great because the last five or six years have been eventful. We've moved house, the boys have started high school, we lost our beloved greyhound Barney and adopted a lovely new hound called Kuro. Our new(ish) home has turned out to be perfect for a family with two teenagers who need a bit of space. They tend to commandeer the basement, so it's almost (but not quite) an adult free zone. 

My mental health situation is manageable. The meds I'm on keep me fairly stable (subject to the odd blip here and there). I recently started doing peer support work with Mind, which I really enjoy. I'd love to study again if my health permits, but I need to take things one step at a time. I've learned that starting things isn't my problem, it's being well enough for long enough to be able to see them through. One day though, maybe...

A little update for you

Hello again and surprise surprise, it has been months since my last blog post! (That sounds like confession doesn't it?) Once again, I was full of good intentions, but did bugger all about them. I just thought I'd write a bit about what's going on for us at the moment.

Things are going ok. Most importantly, everyone in the family is in decent health. The boys are doing very well kidney wise, with no major concerns. This is especially good news for Joe, who sits his GCSEs in June. (Yes, really. He's nearly 16). Both lads are well, are growing like mad and eating us out of house and home. Normal teenagers, then!

I'm generally ok when it comes to my mental health, I just have to be careful not to do too much too soon. The difficulty I have is working out how much is 'too much.' It's a learning process and sometimes I misjudge it, but I'd rather give things a go and deal with the consequences than not try at all. I recently started doing some peer support with Mind. It's going really well, I enjoy it and I think I'm doing some good, which in turn makes me feel better about myself.

The only fly in the ointment right now is that I'm living with horrible pain from the arthritis in my knees. It's in my hips and neck as well (oh lucky me), but for some reason I can tolerate that pain much better. I feel like I have toothache of the knees, it's that same gnawing, incessant ache. As you might imagine, it's worse when I move about (especially going up and down stairs), but in a particularly cruel twist, it's also awful if I sit still for too long! So I can't really win. Driving is difficult, exercising is a serious challenge and sometimes even just pottering about is agony. Unfortunately for me, my GP doesn't seem to take the situation very seriously at all. They won't prescribe 'proper' painkillers (paracetamol and ibuprofen don't help) and they won't refer me to a specialist because it's 'only' osteoarthritis. I've had x-rays, which have confirmed the problem, I've had physio and I do the exercises whenever I remember, but that's about it. I feel like I'm stuck with it now and I dread getting older and more immobile. I don't want this post to be  a long complaint about my poor knees so I'll change the subject, but if any of you have any good advice or ideas about how to deal with osteoarthritis, please let me know.

As some of you may remember, we rehomed another ex-racing greyhound at the end of last year. As we approach the first anniversary of him coming to live with us in Yorkshire, I'm happy to report that all is well. He's a bit of a dickhead at times if I'm honest, but I love him. He's grumpy with other dogs, has form when it comes to chewing cats and is generally a total pain in the arse. However, he's also funny, loving and beautiful, so we forgive him everything. We named him Kuro (Japanese for 'black') and he's quite a character. He has his own twitter account (@kurothehound) if you enjoy reading about houndy exploits.

I still go to as many gigs as I can. I was at the Brudenell on Tuesday night to see Jesca Hoop and I'm back there again in a couple of weeks to see Elbow do a stripped back show. Then I've got Circus Wolves in November, Slow Readers Club in December and Supergrass in January. I'm hoping to fit a few more in before Christmas if I can.

All told, things are pretty good at the moment. Now if I could just get this knees business sorted out.....!

Another phase of life

It's been a loooong time coming but finally, another post in my series of (very) occasional blogs.

I'm happy to say that all's well and life is pretty good. I'm enjoying a period of relative stability in my mental health, my family are well and we have a new family member (about whom more later!)

My psychiatrist tells me that my schizoaffective disorder is currently 'in remission.' That's the medical terminology anyway. My layperson's version is to say I feel well and I'm coping with life (within certain parameters). The parameters are basically that I don't attempt anything that's too ambitious. For example, I tried going to a writing group run by MIND, singing in a choir and taking swimming lessons to improve my technique. Believe it or not, I found three activities a week too much. Not because I was lazy or couldn't be arsed, but because of the mental fatigue they induced. I'm still singing in the choir but I had to let the other activities go, at least for now. I'm not moaning about this, it's just how it was. Hopefully in future I'll be able to add to my repertoire of activities and manage better but I'm only just getting to grips with the fact that just because I can do a thing on one or two occasions, it doesn't mean I can necessarily be relied upon to do that thing all the time. Those of you with chronic physical health problems will no doubt relate to this, but as I say, it has taken a while for me to catch up.

It's hard to accept a slower pace of life when you've always been a busy person, but accept it I must as it's my new reality. I don't know whether I'll ever get back to being the person I once was, but actually I'm not convinced I'd want to. Things are different now and that's ok. That's not to say I don't feel frustrated, constrained or angry sometimes because I do, but when I stop to think about it I realise I'm probably one of the lucky ones.

Moving on, I have good news about the boys. They had a kidney appointment recently and in Joe's case, his protein creatinine ratio (the amount of protein excreted into the urine and a measure of kidney damage) has been brought under control by medication. What this means is that although Joe's kidneys are compromised and that situation will continue to worsen, end stage renal failure is being delayed by some years. Evan will be starting on the same medication soon, with a view to protecting his kidneys for as long as possible. Their deafness has stabilised too, they're both severely deaf but with their hearing aids they manage very well. Long may the present situation continue as Joe's now 15 and his GCSEs aren't too far away. I find it hard to believe that they're both teenagers, when I started writing this blog they were still little boys in primary school! How time flies.

We had some sad news in October with the sudden loss of our beloved greyhound, Barney. Luckily he didn't suffer for long and although the decision to have him put to sleep was one of the most difficult I've ever faced, it was really the only option when he was so poorly. Our home became a sad place for me and I missed him terribly. Some weeks later, a friend sent me a photo of a greyhound who needed a home. He was one of the long stayers in the kennels and had been routinely overlooked because he was big, black and male. (Rescue centres tell us that they really struggle to re-home black dogs, it's a known thing!) It wasn't long before that particular dog found a home, but by this time I was already committed to the idea of rehoming another greyhound.

A few weeks later, I was driving to Birmingham to collect another big, black, male greyhound. He had raced at Perry Barr for a few years and then retired. His name was Brandy. We renamed him Kuro (Japanese for black), did the adoption paperwork and drove him north to his new home. That was three weeks ago and as I write this, he's lying on his back in his bed, belly in the air, chewing a massive squeaky caterpillar. I think we can safely say he's settling in. Ok, he weed on the Christmas tree and sometimes wakes us up by woofing in the middle of the night, but he's part of our family now and that's the deal, you take the rough with the smooth. 

Kuro is very different in character to our sedate old Barney. Barney was a soulful chap, who only ever barked a handful of times in his life.  Kuro is very vocal and tells us when it's meal time, walk time or 'I just want a shout' time. He's playful, funny and wilful. Inquisitive, cheeky and lively. He's certainly keeping me on my toes and encouraging me to walk more! He's a fun dog, an excitable dog and he's ready to accompany me into this next stage of my life, whatever that may bring.

Afternoon tea with Patrick Gale

Nestled on my bookshelf are a couple of novels by an author called Patrick Gale. I read my favourite, Notes from an Exhibition, on holiday a few years ago and was both moved and impressed by it. It's the story of a family, simultaneously ordinary yet extraordinary, deeply affected by the death of artist, mother and human whirlwind, Rachel, who had bipolar disorder. The story moves backwards and forwards in time, revealing aspects of the past through exhibit notes from the artist's posthumous exhibition. It was clear that the author was knowledgeable about mental health issues, but the way the story was written elevated it to being way more than a straightforward tale of adversity. I found the book clever, painful, sweet, fulfilling and gut-wrenchingly real. It covers big topics such as mental illness, love, religion, family, sexuality and hope - but without any of them ever being heavy-handed or overdone. I absolutely loved the book.

My friend Katie and I were therefore delighted to meet with Patrick and Vicky, the person in charge of publicity for his publisher, in a busy cafe in Bloomsbury, having won a Waterstones prize to "meet the author."

Going to London is a big deal for me. I find urban life exciting and enjoyable, yet it can be dangerous. It's easy for me to become overstimulated and overwhelmed by the sheer volume of people, the noise and the bustle. This can lead to an increase in voice hearing and paranoia - unwelcome visitors when I'm trying to enjoy myself!

After a brief pitstop at our hotel, we headed to Gail's Kitchen to meet with Patrick. We spotted him immediately - thankfully, his publicity photos aren't of the 'taken twenty years ago behind a vaselined lens' variety! Vicky introduced herself and Patrick to us and we repaired to a cosy corner for our chat. A tray of amazing cakes soon appeared, along with various cups of tea.

We then spent around an hour and a half in enjoyable and stimulating conversation. Topics ranged from the expected - books and the writing life, to the reasonably obscure, such as illness narratives. Patrick is delightful company. He's clever, witty, funny, thoughtful and has a definite twinkle in his eyes. We each shared a little about ourselves, our domestic lives and our families. I realised immediately that I couldn't be "me" unless I shared something about my mental health - not always an easy thing to do. So I was honest about my difficulties and how they've impacted on my life. I also spoke about my sons' Alport Syndrome, their deafness and kidney issues. I was pleased that Patrick and Vicky showed interest, but that this information was received as part of who I am, rather than being seen as a plea for sympathy. 

We chatted about the talk Patrick would be giving that evening in Chorleywood to discuss his latest book, Take Nothing With You. Later this month, he will be giving a similar talk at Ilkley Literature Festival and we shared our love of Ilkley, including the Lido, of which Katie is particularly fond. Unlike the rest of us, it turned out that Patrick has run up Ilkley Moor and past the Cow and Calf. I didn't realise that Patrick was a runner until he mentioned this and it was interesting to ponder the relationship between running and writing.

We discussed boarding school and the effect of sending often very young children away from home. Patrick explained that his father had been sent away to school aged five and that it'd had a profound effect on him (and presumably, therefore, on his family).

We spoke about Patrick's home and garden in Cornwall (on the second windiest spot in the UK). He mentioned his literary shed, where he leaves books for walkers and passers-by to collect. It has seemingly been a big success, with others also bringing books to deposit at the shed. We discussed the writerly life, being on tour and our mutual love of Barter Books in Alnwick, where you can lose yourself for hours, reading beside the open fires.   

We discovered that like me, Patrick has rescued a retired racing greyhound. We enthused about the beauty, nobility and laziness of greyhounds and their whippet cousins. Patrick's greyhound, Cerce, was apparently rather shut down and in poor condition when she was rescued, but is now a happy, healthy hound, loving her life in Cornwall with her whippet sidekick and human companions.

In a recent Guardian interview, Patrick said that if he wasn't an author, he'd probably be a psychotherapist. As a counsellor, this appealed to me so I asked him how these qualities and his curiosity about people flowed into his writing. Patrick shared a little about the way he allows his characters to 'grow' organically - they each have a life of their own and a back story, much of which never makes it into print, yet allows him to create three dimensional, characters, with real emotional depth.

I mentioned the sociologist Arthur Frank and his approach to understanding personal narratives, especially in relation to illness. Unfortunately I wasn't very good at explaining why he occurred to me in conversation with Patrick! It just popped into my head and I clumsily spoke about it before I'd clarified my point. What Patrick had said about the telling of his character's individual stories reminded me of Arthur Frank's assertion that we tell stories in order to make sense of the events in our lives, as opposed to conventional wisdom that something happens and then we go on to tell others about it.

Patrick, Vicky and Katie all recommended that I read Maggie O'Farrell, in particular I Am, I Am, I Am : Seventeen Brushes With Death and a host of other authors, whose names I have now sadly forgotten!

In characteristic clumsy Ali fashion, I managed to accidentally throw a teapot lid across the floor mid way through our discussions. Thankfully for my pride, nobody mentioned it. I briefly felt like a bit of a numpty, but thankfully nobody drew attention to it!

There were so many other topics I wish we'd had time to discuss, but when Vicky asked if she could take a photo of us all together, this signalled the end of our meeting as Patrick needed to be on his way. Katie and I will be attending Patrick's talk in Ilkley on the 30th September, so we parted company saying we all looked forward to meeting at the Ilkley event. I had a truly wonderful afternoon and only wish we'd had a bit more time!

I'd like to thank Patrick for being so generous with his time, thoughts and enthusiasm, Vicky for being such a gracious host, Katie for inviting me to tag along with her and of course Waterstones for organising the event. 

Barney Boy

Barney is a nine year old greyhound. We rescued him five years ago, once he'd finished his coursing career in Ireland. I remember the day we first met. Barney was led towards us from the kennels, dancing about on the lead with his long, waggy tail whipping the air. A tall, chunky (40kg) brindle boy, with a deep chest, long back and beautiful soulful eyes. For me, it was love at first sight.

He turned out to be the most peaceful, laid back lad who never barks. He walks beautifully on the lead, is cat and other dog friendly and has settled perfectly into life as a much-loved pet. He loves loafing on the sofa, his own luxurious bed, our bed; in fact he'll loaf about pretty much anywhere that offers a bit of comfort. He's quiet, gentle, good with people and has beautiful manners.

It wasn't long after getting Barney that I started to become unwell. This meant spending a lot more time at home. Barney turned out to be the perfect therapy dog. He listens, offers a reassuring muzzle or paw, sits or lies quietly by my side. He forces me to get out into the fresh air every day for his walk. I'd struggle to do this for myself, but for him, somehow I always manage.

Barney is the perfect company for someone who hasn't been well. He has beautifully soft fur on his head, velvety ears and he always appreciates a pat or a stroke. He'll happily have a cuddle and will occasionally chat in his own, houndy way. Sometimes he plays, throwing his stuffed animals into the air or zooming around the room. This never fails to make me laugh.

Barney is getting older now, the fur on his long muzzle becoming grey. He's slowing down, his joints sometimes hurt (Yumove to the rescue!) He's started appreciating shorter walks.

We have been through a lot together, Barney and I. He's been by my side in good times and  bad. I'm sure life will throw up many more adventures for us. So here's to the future, old lad. Thank you for being "my boy."