A crisis averted

Well blinkin' heck, time for another blog post. I don't wish to alarm you, but during the last few weeks, I've been lucky to survive an extreme reaction to some new medication. I spent two weeks being passed between my GP, the crisis team, the community mental health team (CMHT) and 111. Nobody seemed to know what to do with me and I fell through the cracks. I was left completely unsupported by the professionals, despite being a CMHT patient. 

It seems the confusion came about because I no longer have a care coordinator. I was discharged last year because I'd been doing so well. I discovered that there is no quick mechanism for unwell patients to return to CMHT care once they've been discharged. This seems like a dangerous oversight. Surely, people like me with 'severe and enduring' mental health problems need support if they happen to relapse? 

Now that I'm feeling better, I'm going to write to the CMHT and give them some feedback about the lack of care I received. It's been a sorry saga of no call backs, passing the buck, misinformation and general negligence. My GP was equally unhelpful. It would have been so easy for me to have become another statistic, for my name to be added to the list of catastrophic failures by mental health services. Every time someone slips through the net and sadly dies, the NHS trusts involved talk about 'lessons learned' and changes made. I saw no evidence of this. 

In other news, my boys had their regular appointment with their kidney consultant recently. Unfortunately, things are starting to progress with Joe's kidney disease. He's been given more medication to manage this, with the prospect of starting further medication at his next appointment. Evan will also soon be started on an ACE inhibitor to protect his kidneys. I'm happy to report that both the boys are well in themselves. Joe's GCSEs are coming up in a few weeks, so it's good to know that his kidney problems aren't causing him to feel poorly.

I've mentioned previously on Twitter that I've got a meeting with school and the teacher of the deaf to discuss provision for Evan. It's about making sure that the combination of Evan's deafness and autism isn't getting in the way of his learning. Right now he's not doing himself justice at school and his teachers have asked us for advice as to how they can help him. Deaf CAMHS (the people who diagnosed Evan) can hopefully help us give the teachers the support they need. The teacher of the deaf has agreed to make the referral to deaf CAMHS, so hopefully we'll have things in place long before Evan sits his GCSEs. 

That's all my news for now. Thanks for reading and I look forward to catching up with you soon. X 

 

 

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.

Worrying about worrying

My experience of ‘going mad’ was the result of me mentally fending off the prospect of the physical demise of my own children, who, I have been told, will need kidney transplants before age 20. My imagined view of their young lives vanished overnight and into my consciousness came things like renal diets, dialysis, the hope that a kidney donor would be found, anxiety that their Dad can only donate to one of the boys (assuming he’s a match for either, which we don’t yet know). I had fears about operations, the damage that renal failure can do to a body, worries that their young lives – by then surely on the cusp of adulthood – wouldn’t be what I imagined. I worried about all sorts of things; immediate issues like their deafness, to more distant but important things, like their education, social lives, being in kidney failure whilst at high school and of course, dialysis and transplantation. I worried about the fact they each probably need more than one transplant during their lives and I worried about the fact they won’t be a priority for donor organs once they reach adulthood. I worried their illness will impact on their plans to travel, their work prospects and their relationships. I worried about their sense of self, how they'll make sense of who they are as people with a rare illness. Overall, I worried because they are too young to fully understand what’s happening and thankfully they aren’t worried for themselves because they don’t feel ill. In short, it was all too much. My hopes for my children were scooped up, shaken about and scattered into the wind. They haven’t vanished, but they’ve been dispersed. Despite all this, I haven’t felt sad and I haven’t cried once. Is it possible to be in shock for several months? 

People kept telling me not to worry, not to be anxious about a future that hasn’t even happened yet. “The future will take care of itself, just focus on the here and now,” people said. Great advice, I’m sure. But firstly, what I’ve been worrying about isn’t some abstract possibility; my boys’ kidneys will fail, it’s not a case of if, it’s when. The manner of it and how it'll happen is unknown but the reality is, it will.  Secondly, telling someone like me not to worry is like telling a seal they can’t swim and instead they should flop about on dry land all the time; worrying is what seasoned worriers do. When we aren’t worrying about something, we feel odd, alien. I’ve been a worrier all my life. If there were medals for worry and plaudits for anxiety, I’d have won them all. I worry about worrying. And I do it all silently, inwardly. Partly it’s because people say unhelpful things like “don’t worry” (uncharitably, I suspect this is more for their own benefit than mine, because they want to be able to make everything all right) but also because privately, I feel ashamed about worrying. I don’t like it and I don’t want to inflict my boring concerns on others. I also feel I don’t deserve to be anxious, because others have it so much worse. (And it’s true, they do, but that’s not to say my life has been a picnic lately either). Incidentally, I dislike the term ‘worry’ when others use it about my circumstances, because I think it trivialises horrible, gnawing, ever-present fears. But yes, I'm a big time worrier and given something this big, it just sent me over the edge of a cliff.

I feel very sorry for the people who had to witness it. They saw my fragmentation, paranoia, fear and confusion first hand. My words and actions were so idiosyncratic (and at odds with the person they know) that they made no sense. For me, I found that the everyday parts of my life became the backdrop to a drama played out in a private, nightmarish landscape. It was a horrible time and so I'm thankful that I'm now well enough to write about it. I daresay this might seem like a terribly boring, self indulgent post but to me it's important. So thank you for reading what I've written.     

What's been going on

It's been a while since I've posted on my blog so I thought I'd let everyone know what's been going on.

The geneticist finally confirmed our diagnosis of x-linked Alport Syndrome. The biggest surprise was that it had come from my Mum's side of the family, not my Dad's. There was some initial confusion about this as various past members of my Dad's family have had kidney disease. It turns out this was a red herring and nothing to do with Alports. So my Mum has Alports and it has now been confirmed that her kidney function is declining; something she was previously unaware of. At least she's now in the system and will get the care she needs.

We now know what to expect in terms of the boys' future kidney failure and it isn't pleasant. We also know that there's a 50/50 chance they'll need transplants before age 20. We suspect this will be the case for our sons as Joseph has visible blood in his wee, both boys' hearing loss was early in life and Joe's urine protein levels remain high, despite the fact he's now on medication. Which are all poor prognostic signs. We don't know for certain but the likelihood is they'll be unwell during their mid to late teens. It would be great if the medication delayed this til their 20s, after leaving school but at the moment we just don't know. It's very much a wait and see.

I felt very sad on the first day Joseph began taking medication because I realised he will be on medication of various kinds for the rest of his life. As will Evan. Currently it's just to protect renal function and slow the progression of kidney failure but inevitably that will increase. As kidney function declines, the boys will go on renal diets, they'll most likely become severely anaemic so will need extra iron, there'll be calcium to offset the effect of kidney disease on the bones (to stop them getting rickets, the consultant said). They'll introduce phosphate binders to aid the success of the renal diet and they'll be given growth hormones if they aren't fully grown by the time this all happens. Plus there'll be medicines to help with them actually feeling unwell And then there'll be heavy duty medication prior to the transplant, then afterwards to stop the organ being rejected. It's no party, having Alports and all medical attention is focused on treating the symptoms because nothing can be done to stop it.

It often feels incredibly harsh and unfair, yet at the moment, both boys are well and they're happy. Despite all of this going on in the background, they are both excelling at school. Joseph will be doing level 6 SATS next year as he's extremely bright and capable (brief Mumbrag there, I do apologise!) Evan is the same in his own unique way. Their hearing aids have really boosted their learning and the school and audiology team have continued to offer first class support. I'm extremely proud of them both and it feels so unfair that a few genetic spelling mistakes have resulted in all of this.

As you might imagine, all of this has taken a huge toll on my mental health. That's why I've been so quiet, I've actually been really unwell. I'm now getting the right kind of help but it takes a bit of time. I've been grieving, I suppose; dealing with the loss of my children's health (and potentially my own, since I have it too. And then of course there's my Mum). It hasn't been an easy time at all. On the upside, for now we are all physically well enough to live as positively as we can. As soon as my mental health permits it, I'll be properly back at work. Life goes on, because it has to.