New year, new words

Hello! 

And a very happy new year to you. Time for another not-so-frequent update from me.

As some of you know, I've been working in mental health support since the summer. There's no doubt that it's challenging work, but it's also enjoyable and hugely rewarding. Having a serious mental health condition myself, I have to be careful to look after my own health at the same time as looking after other people's. It's not always easy to find a balance, but I'm getting there. 

We had the usual double celebrations just before Christmas, with Joe's 18th and Evan's 16th birthdays. Both lads are well and both have exams this summer. Joe's hoping to go to university in September, while Evan will be staying into sixth form to do his A levels. The boys have recently transferred from children's to adult renal care, so they are seen by a different team at a different hospital. Things are fairly steady on the kidney front. Joe's kidney function is declining, as expected in Alport Syndrome, but we don't yet know how far away he is from needing a transplant. He continues to live a good life (with one or two sensible dietary restrictions). He's incredibly fit, goes to the boxing gym three nights a week and does a lot of fitness stuff at home too. He also runs 5K every night. The doctors are supportive of this and have told him to keep it up. 

Evan's kidneys are still in pretty good shape. It seems that the exact genetic mutation he has is less severe than his brother's. Ultimately the progression of the disease will be the same, but he's likely to be transplanted at an older age than Joe. In the meantime he enjoys playing the drums, watching films and takes an interest in watching UFC (mixed martial arts, for those not in the know!) Thankfully he has no plans to take it up as a hobby - having one child taking part in combat sports is quite enough! 

As for me, well I'm doing ok. My mental health is up and down a lot, I'm actually off sick from work at the moment as a result. Thankfully my employer has been very supportive. I'm just keeping busy and looking after myself as best I can. I've recently entered a mental health writing competition and if I'm selected (a VERY big if), an established author will work with me to tell my story. Like I say, it's a big if, but I enjoyed putting my submission piece together. 

Last summer I lost somebody who was very dear to me. My lovely cousin Chris sadly took his own life in June, which was a huge shock. He was like an extra big brother to me and understandably the loss has made me reflect on the importance of having good mental health support. My own experience of mental health services is extremely patchy and not everyone has the support of family and friends. We can't all rely on voluntary services, either. Mental health care needs something of a revolution, in my opinion. The last two years of pandemic life have taken their toll on all of us in different ways and it's my firm belief that we desperately need to get to grips with emotional and mental wellbeing. 

I'll leave it there, but thanks for reading these words. I'll try to write more frequently this year! 

 

New Beginnings

Hello folks,

Time for another quick update for you! 

Things have been pretty steady this year, with just maintenance appointments for the boys to do with their kidneys, ears and eyes.  

We have a big meeting on Wednesday at St James' hospital. The boys are soon going to transition from children's to adult renal care. I'm sorry that we will be saying goodbye to the lovely Dr Finlay, but now that Joe's almost 18, he has to move to adult care and it makes sense for Evan to move over at the same time. Adult renal is at a different hospital to the children's service and we don't really want to be having appointments at both. 

The other big change is that because the boys are the patients, the doctors won't automatically speak to me and James any more. As the boys have got older, Dr Finlay has been very good at speaking to them directly about their care, but up to now we have always been in the room. This will change when they move up to adult renal. I feel that this is the biggest change because neither of the boys are especially forthcoming when it comes to telling us things! Even important things. So I am a bit nervous about no longer being in the loop in the same way. Although I expect the boys will have to learn to communicate more about their health because we will be involved in helping them with matters such as diet and, eventually, dialysis and transplants. So Wednesday is a big day as we get to meet the people who will be caring for our boys. They have their final meetings with Dr Finlay this year and then from that point onwards, it will be new doctors and a different hospital to visit. 

In other news, as we are slowly moving out of lockdown, I'm looking for a new job. You may remember that I was offered a job early in the new year. Sadly it fell through and I never even got started. However, I have an interview on Monday for a job I really want. So fingers crossed for me at 10am please! 

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! 

Summer musings

What a strange few months it's been for all of us. Following recommendations from their kidney consultant, the boys have been shielding since schools were closed at the end of March. It's been really tough for my eldest. At 16 he's more independent and wanting to get out and about under his own steam. His GCSE exams were cancelled this summer and his social life has been a complete non event. Not what you want when you're 16. 

None of this has remotely bothered my youngest. By his own admission he's a happy homebody who finds social interaction stressful. No school for several months is something of a dream come true! He's done online school work, but he's loved having a lie in every morning. It'll be a shock to return to real life school in September...

I've read about how people with mental health difficulties have struggled during the lockdown. I must be an exception because generally speaking, I've been ok. That's not to say I haven't had my wobbly moments, but I wouldn't say it's been any more than I'd have had under ordinary circumstances. 

One area where I've really struggled though is sleep. This is important for me because ongoing poor sleep often leads to a mental health relapse. I fall asleep ok, but then I'm awake just two or three hours later. And when I say awake, I mean wide awake and ready to get up. Which is pretty inconvenient when it's 2 or 3am. Obviously, the next day I'm absolutely knackered. My psychiatrist referred me to an online 'sleep hygiene' workshop (yuck, I absolutely hate that term!) It was a couple of hours of them stating the obvious and suggesting I do what I already do, so it wasn't exactly helpful. I was given the grand total of 3 Zopiclone tablets last time I asked for chemical help and they don't work particularly well for me anyway. So yes, sleep is an ongoing battle, but apart from that I think I'm doing ok. 

The boys are generally well. They haven't had a kidney appointment since January so we don't know how they are fareing on the renal front, but their hearing is holding up ok. They are soon to be getting fancy new hearing aids as well, so that's good. 

Kuro had the grand total of 25 teeth out at the vets last week. Poor lad, he's been through quite a lot in the two years since we adopted him. He's doing ok though, he's eating fine and doesn't seem to mind being a toothless wonder. 

I lost two friends during the past few weeks. One was an ostensibly extremely fit and healthy 50 year old woman, the kind of person who runs marathons and jogs up mountains! So learning that she had died suddenly was a massive shock. Her name was Roxanne. 

My other friend, whose name was Tom, had been ill for some time with glioblastoma, a rare but deadly kind of cancer that affects the brain and spinal cord. Tom was married to a very dear friend of mine and although we knew he was terminally ill, his death at the age of 30 was still a shock to the system. Thankfully I haven't attended the funerals of many young people, so it was an extremely sobering experience. It may sound trite, but I'd say if you love someone, let them know because none of us are guaranteed a tomorrow. 

That's a very sober note on which to leave you, but I suppose my friends' deaths have made me appreciate people all the more.  

Love to you all and I'll see you soon x

 

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 

 

 

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.....!

'Agony Ali'

I've recently picked up a lot of new followers - which might have something to do with the fact that I mentioned Leeds United and it got picked up by the Elland Road Owl! Here's a brief-ish introduction to me, which will save you the trouble of reading my previous blog posts.

"There's a lot I could say about myself in the past, but I'm going to stick to the last five years or so. As you may know, I'm married to James and we have two sons, Joseph who's 15 and Evan, 13. We live in sunny Leeds.

Roughly five years ago, my youngest son had some routine health complications, which resulted in further investigation. After many months of tests involving the whole family, it was confirmed that the two boys and I have a rare genetic disorder known as Alport Syndrome, in which a particular type of collagen is affected. This collagen is found in the kidneys, the ears and the eyes. The collagen prematurely ages, meaning that people with Alport Syndrome become deaf, experience kidney failure (usually developing over several years) and can have eye abnormalities.

Both my boys are severely deaf and they both have kidney disease, which will progress until they both require transplants. It's not possible to 'cure' Alport Syndrome, but the effects on the kidneys can be slowed with medication. I too have Alport Syndrome and therefore kidney disease, but it's typically slower to develop in women. At the moment my hearing is ok.

Learning that my children were affected by this condition and that I too have it had a massive effect on my already variable mental health. I was studying for a PhD at the time, which was stressful enough on its own. I had a psychotic breakdown in 2014 and eventually had to give up the PhD and the counselling career I had recently begun. I was hospitalised several times during 2015/16 and was later diagnosed with schizoaffective disorder (depressive type). This gave me answers to questions I'd had over the years and explained why my mental health had always been so up and down.

Since my lowest point in 2015, I've been slowly rebuilding my life. I began a full time professional doctorate in Counselling Psychology in 2017, but found this and commuting to university too mentally taxing and had to give it up to preserve my mental health. I spent much of 2018 feeling a bit sorry for myself and something of a failure. I've since turned that around and have accepted that I'm not useless, I'm just ill.

Now that I'm recovering, I'm looking to do something again. I've no idea what this 'something' will be, but I'm hoping I can combine my love of writing and helping people with their emotional and mental health difficulties. I'm already qualified and experienced as a counsellor, but the writing side of things will be a new challenge for me.

Maybe I should set myself up online as an Agony Aunt and charge people a small amount for my services? Agony Ali!

Thanks for reading if you got this far - it's been lovely to meet you!

Ali x"

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.

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