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! 

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