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! 

'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 

 

Robot ears

Yesterday, the boys went to choose their hearing aids. As I mentioned previously, along with progressive kidney damage, a typical symptom of Alports Syndrome is sensorineural deafness, caused by the ongoing breakdown of the collagen membrane found in the ear.

We knew that Joseph had hearing problems and it turns out he's moderately deaf in both ears. His hearing loss includes the tones used in everyday speech, so it's no great surprise he was struggling to keep up with conversation. Evan is also moderately deaf, but at the moment his hearing loss only affects one ear.

So yesterday was hearing aid day. This involved lots of laughing at one another whilst having ears filled with purple putty to create an ear-shaped mould, as well as the serious business of deciding what colour of hearing aid to choose. In typical understated fashion, Joe's are bright orange and Evan's glittery green. (As you do!) They now have to wait about 4 weeks whilst they're being made, as each one is created especially for the wearer.

The whole experience has reminded me just how brilliant kids are at dealing with things that we adults might consider a big deal. As far as Joseph is concerned, he's "hearing impaired, not deaf, deaf makes people think I can't hear anything, when actually I can." Fair point! For both of them, wearing hearing aids is a simple answer to a simple problem. As Evan put it, who wouldn't want "robot ears?!" And personalised robot ears at that. I'm not dismissing the seriousness or significance of hearing loss, I'm just saying that the boys have been surprisingly matter of fact about it all. I daresay this attitude will serve them well with what's likely to happen in the future with this disease.

The audiologist directed me to this website, where you can hear what the world sounds like to someone with hearing loss.... http://www.hearinglikeme.com/facts/what-hearing-loss/hearing-loss-simulator-understanding-mild-and-moderate-hearing-loss

Have a listen and see what you think! The speech sounds in particular were quite a shock. I'd imagined that sounds might be faint or indistinct, but I hadn't considered how muffled things would be. I realised that the world is organised primarily for the benefit of those who hear well, at the expense of those who do not. Tannoy announcements, for example, are usually made in crowded places with lots of background noise such as train stations, and are very difficult to understand when you're hearing impaired. Joseph told me how in class, he can hear his teacher as long as he can see him (thanks to the benefits of lip reading.) If a lesson involves the use of a whiteboard, then depending on where his teacher stands, this can create problems as he has to choose between either looking at the board or hearing his teacher! Simple things like that could be easily overcome, but unless it's brought to the attention of the teacher, they might not even be aware that it's an issue. I'm sure there are many more examples which I've previously never considered but will soon learn. I was advised by the audiologist, for example, that negotiating traffic and cycling can be more difficult for hearing impaired kids, as they don't have the added input of sound to help them judge distances.

I'm glad the boys will soon have hearing aids to help with some of these issues but I'm also thankful for the reminder that not everyone has full hearing.