How things are going

I thought since I'm laid up with the lurgy, I might as well use the time to write.  

A mixed picture is how I'd describe things right now and I'd imagine that's the same for most of us. On a positive note, my mental health has improved beyond all recognition. I can't attribute this to anything in particular that I've done or not done, it seems that it just is. I'm not complaining! I'm trying to make hay while the sun shines and I start work in peer support at the beginning of November. Part time, hours to suit. I'm looking forward to getting started. 

I find the whole thing of living with a serious mental health problem quite bizarre. There are times when I'm really unwell and yes, disabled, by my condition. Yet at other times I find myself able to live a more 'regular' life, which includes doing more of the things I enjoy. It's just typical that my recovery has taken place at the same time as a global pandemic, meaning there are no gigs to go to, no plays to see and no live sport. Hopefully by the time things get back to something approaching normal, I'll be able to take advantage of feeling so much better. 

Having had the opportunity to reflect on 'the illness times,' I can see that things were beginning to slip much earlier than I originally thought. I only wish I'd had the ability then to see how unwell I was becoming. It could have made a huge difference to those years of struggling. Yet somehow, having those difficult years has taught me a lot about myself, my own mental health and a lot about other people too. I wouldn't go so far as to say it's been positive, but it hasn't all been doom and gloom either. I've learned a lot and had a number of life changing experiences, which I think have helped shape me for the better. 

In other news, the boys had a kidney appointment last week. Things are starting to move along in terms of Joe's kidney disease and as such, his treatment has been altered slightly. I can't go into detail here because Joe's asked me not to. At 16 he knows what he wants and having his medical details broadcast on his Mum's blog is not it! Suffice to say, it's been a stark reminder that we are living with a lot of uncertainty in our lives.  

Evan is doing really well, there's not a great deal to report. It's just a case of monitoring him and making sure he lives a generally healthy lifestyle. It's interesting that the boys have the exact same condition, but the specific genetic 'spelling mistake' is unique to each of them, meaning the disease progresses at different rates. 

It won't be long before the boys will be saying goodbye to Dr Finlay and the paediatric renal team at Leeds General Infirmary. They'll be moving over into adult renal services, who are based at St James' hospital. The transition will be gradual, with lots of opportunities for them to ask questions and meet their new doctors. 

As some of you know already, Joe's mad about boxing. In his free time he does a lot of weight training and gym work. He can't fight at the moment thanks to Covid restrictions, but he's looking forward to having his brace removed in January and being able to spar again. I have mixed feelings about this. I think it's great that he's into fitness and keeping himself healthy. I'm less enthusiastic about the idea of him being punched in the face. Or indeed, him punching anyone else! Having said that, the boxing training has turned a very single minded young man into one who is also extremely well disciplined. I have had to get over my squeamishness about the punching thing because he's so determined to give it a go. I hope he continues to enjoy his boxing because it's genuinely the thing that brings him the most enjoyment in life. 

Meanwhile, I realised the other day that the lads will be sitting their A levels and GCSEs at the same time. So that looks like being a stress free summer...! 

That's about all for now. Thanks for reading if you got this far! 

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.

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."

A happy place

Last time I posted, I wasn't feeling at my best. Happily, I'm now much, much better. As you might remember, I paused my doctorate for a year and took a bit of time out to get myself well again. A few months of rest and self care has made a huge difference; I'm happier, healthier and enjoying life. 

I've joined a choir and a creative writing group and been spending a lot of time with friends and family, including my trusty sidekick, Barney (greyhound, for those of you who don't know!) These things have all done wonders for my mental health and probably my physical health too. 

I'm slowly learning about my limitations, which has been one of the hardest things to get used to. Pre-burnout me used to take on far too much and pile on the pressure. I've learned to my cost that I can't do that any more. I'm hoping that this knowledge will help me find a healthy balance between activity and rest. 

It's unlikely that I'll return to the doctorate. Not because I don't want to, but because on balance it's probably not the right choice for me, health-wise. I've learned that wanting to do something doesn't necessarily make doing that thing realistic. Another tough life lesson, when I used to think that I could achieve pretty much anything I put my mind to.  

Having a mental health problem has taught me a number of things about myself. I won't list them all here as it would make for boring reading, but to me they're important and useful things. There's nothing like coming up against your own capabilities to make you reassess your priorities. At first, I felt angry, frustrated and defeated when I wasn't able to achieve the things I wanted. Now, in place of the anger, frustration and defeat, I feel acceptance. I'm wondering whether a little humility might have shown itself too, because I've recognised that we aren't the sum total of our achievements, that we are valuable for just being. In the past, I'd talk the talk in this respect but that was always whilst 'achieving.' It was a bit like when a beautiful person says that looks don't matter. Now that I'm not achieving (or not in the conventional sense), I've come to really believe it. 

I still have ambitions and hopes, of course. I don't know whether my ambitions will take me anywhere, but I think it's good to have them as things to work towards. In short, life is good and I'm generally happy. I'll hopefully be starting a volunteering role soon, helping to improve the quality of life of older people in my area. 

On the family front, I'm happy to say that things are also going well. The boys are *very* deaf, but their hearing aids do a fantastic job. Their kidneys are holding up pretty well. Joe, being the older of the two, is showing signs of kidney disease but he's on medication to protect them and keep them going for as long as possible. We are hopeful that both the boys will be able to see out their education before the need for transplants. 

All told, I have no complaints. I'm lucky. If you're reading this, I hope that you're well and happy too.  

Update on family life

My first blog post of the year, all about the family.

I'm happy to be able to say that the boys are doing well on the Alport Syndrome front. They had their routine appointment with their renal consultant in December and he was happy with their progress. We'd been warned about a possible downturn in kidney function around puberty and given Joe's 14 and Evan 12, that's right about now. So far though, things are looking good. The doctors have increased the dose of Joe's medication to protect his kidneys and there's talk of Evan starting on the same stuff but overall, things are positive. They'll continue to be monitored regularly, in fact Joe's having a kidney ultrasound on Friday to make sure everything is still as it should be. 

Both lads are doing really well at school. Back in September, we were concerned about Evan's transition to high school but I'm delighted to say that it's gone like a dream. The staff have been brilliant about both his deafness and the Aspergers situation and apart from a few minor hiccups in the early days, things have settled down. 

When it comes to being deaf, both lads have their struggles both at school and elsewhere; people (including me) sometimes forget that the boys don't hear so well if you talk to the side or the back of their head, meaning they can't lip read. They use radio aids in the classroom, which really helps, but the background noise and chaos of the school environment still means that they miss things. Attending assemblies is largely a waste of time for the boys because they don't hear anything of what's being said. Group situations where more than one person is speaking can also be difficult. Their hearing aids are fantastic and the boys have regular follow-ups from Audiology and a teacher of the deaf. 

Moving on to me, things have been tough during the past few months. In September, I started a full time Doctorate in Counselling Psychology up at the University of Teesside. The course is excellent and the content fascinating but unfortunately my mental health was just not up to the task of managing the course. Commuting to Teesside didn't help and I was permanently tired. My arthritis flared up, meaning I was in constant pain. All things considered, I made the decision to defer the course to September 2018, a decision which was supported by my course leader. I'm still officially a student, I just don't have to attend classes until September. This gives me roughly  eight months to get myself sorted for starting again. It might take me longer than some people, but I'll get there!  

In other news, in September we finally moved house. We had a difficult six months of will-we, won't-we with the house as practically every legal obstacle was thrown into our path. It was extremely tedious and frustrating, but we got there in the end and are really happy in our new home. We finally have a garden, so I can buy that sun-lounger I've always wanted!

I'll end this post by wishing you all a very happy new year. I look forward to catching up with all your news xxx 

 

Goodbye to all that

Well folks, my PhD career is officially over. I'm sorry to say that my wobblesome mental health led to me officially withdrawing from my studies this week. I realised I couldn't give my PhD the kind of attention it required because I was too busy looking after myself and trying to get well. Like most things in life, I reckon a PhD is only worth doing if it's done well and sadly, the standard of my academic work was slipping. I wasn't happy about doing substandard work and decided, on reflection, that I'd rather give it another go at a time when I can give my academic work its full attention.

This decision has been several months in the making and has the full backing of my academic supervisors. It's sad in a way as I started out doing so well but as academics are fond of saying, a PhD is a marathon not a sprint and I just couldn't maintain the high standard required once my health got in the way. 

I realise that many people lose a lot more than a PhD opportunity thanks to ill health, but it's been a significant loss for me and I'm, well, I'm gutted. I'm also a bit confused and bewildered about what to do next - my passion is mental health but I'm unsure about my next steps  in this area.  

On the plus side, taking a step back from academia means I can make my own mental health the priority, along with focusing on family life. (And yes, I realise that I sound a bit like a resigning politician here - "I'm stepping down to spend more time with my family!") But it's true, there's plenty going on with my family at the moment - good stuff, mainly - so I won't be short of things to do whilst I'm deciding what to do next.

Getting on with it...

I realised yesterday that I haven't written a blog post for quite a while so here's an update of what's been going on with us lot. 

First up, some good news. The boys now have their all singing, all dancing, sparkly new hearing aids. Admittedly they don't do much in the way of singing or dancing, but they do sparkle. It was the first day of wearing them to school yesterday and I'm happy to say it all went well. Lots of interested questions from classmates, a fair bit of "take them out and give us a better look, then" and the realisation that school can sometimes be a very noisy place!

I've been really impressed with the way the school have handled the whole deafness thing; they've neither dismissed it nor made it into a big drama. They just see it as some children need a bit of technological and practical support to help their learning and they'll make sure that happens. For Joe, who needs a bit more support than his brother, they're going to set up an FM system that broadcasts the sound from a teacher's microphone directly to his hearing aids, rather than amplifying the whole room. The deaf and hearing impaired team from the local authority will also assess the school's provision to make sure it remains both relevant to and adequate for the boys. Alport's deafness is progressive, so at some point Evan will also need extra hearing support but for now he's ok with his sparkly green ear wear. I'm happy that the school are getting the balance right and are providing practical support to help the boys to get on with all things school related, while we get on with the parenting stuff.

Since I last posted here, a few other things have moved along. The results of several tests have shown that Joseph already has kidney disease. This was a bit of a blow as it moved him from being "at risk" of kidney disease to showing he already has it. This means instead of planning a transplant in the dim and distant future (possibly as late as his thirties), it may well be necessary before he's twenty. End stage renal failure before age twenty means the juvenile form of Alport's and whatever happens to Joseph will also apply to his brother, unfortunately, so the message is very much to get out there and enjoy being in good health!  

In the short term, Joseph has a kidney biopsy in a couple of weeks (to confirm the diagnosis once and for all, and also assess the extent of kidney damage). He'll also be starting medication to prolong kidney function, although unfortunately it doesn't stop the problems altogether. On the plus side, we aren't quite at the stage of the dreaded 'kidney diet.' I was told by a renal nurse "it's a lot less grim than it used to be," which is faint praise if ever I heard it! So for now it's a case of a generally healthy diet, no added salt and avoiding the ready made or convenience stuff. Good dietary advice for any of us, really, and thankfully no need to start thinking about weird practices like double boiling the potatoes. Apparently, many of the tricky foods on a renal diet are vegetables, which  might mean that veg-averse Joe is better equipped than some to get used to that, when it comes along!

During all of this, I've become increasingly aware of the experimental nature of medicine in patients with rare diseases. The doctors told us that Joe's medication could help delay the onset of end stage renal failure. Note the cautionary use of the word "could," as it hasn't actually been tested for that purpose. There's a clinical trial going on in Germany at the moment but for now it's being used off-label, based on promising laboratory results. That's justification enough for me; it's unlikely to cause harm and it may help. Most importantly though, there's nothing else! That's as good as it gets for Alports, until you need a transplant. Such is the nature of rare diseases, I suppose; they're little understood. At the moment, scientists are getting to grips with the genetics side and it'll be great if that also leads to innovations in terms of treatment. I'm almost tempted to don a white coat and have a go myself, but anyone who knows me knows I'm far too clumsy for lab work!

So there you go, a bit of a mixed bag for us all. We're doing ok, the kids are well and as lively as ever. Evan is enjoying his drumming (the neighbours probably aren't, although thankfully he's now getting pretty good!) We've found a music teacher willing to take on a deaf kid to learn the piano (Joe), so in between that, school and their love of Minecraft, Lord of the Rings, Star Wars and Doctor Who, the Alports stuff doesn't really get a look in. Just as it should be!