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

 

Lockdown blues

I'm writing this in the middle of the second week of lockdown thanks to the Coronavirus. As of this week, my family and I (and don't I just sound like the queen there?) Are at home, restricted to just walking the dog a couple of times a day. We are more restricted than most because my sons have kidney disease thanks to Alport Syndrome. Their consultant wrote to us, advising a minimum of 12 weeks shielding.

The first few days weren't too bad really. Being at home together gave us a slight sense of being on holiday. There's been no school for the boys for a couple of weeks now, albeit they have online learning to do. GCSEs have been cancelled for this summer, so the set revision feels a bit pointless.

It started to feel strange after week one. We've now had two weekends of not going anywhere and not seeing anybody, which is very much out of the ordinary. We've almost run out of things to say to one another, because none of us have been anywhere. It's surprised me how much of our conversation revolves around our activities outside of the house. James is still working from home, so five days a week he's downstairs in the office. The Xbox and PlayStation are also downstairs, which means the boys can't play on them during the day. This is probably a good thing, given the ongoing parental quest to reduce screen time. 

Teenagers tend not to want to hang out with their parents and my boys are no exception. They seem to appear at meal times and then vanish again. They boot me out of the living room every so often so they can watch something they want on the big TV, or I bump into them during one of their many kitchen raids. Communication is usually perfunctory. They haven't seen their friends in person for a few weeks now, but they are enjoying chatting to them online and playing online games in the evening. My eldest lad said to me the other day 'I bet you're glad there wasn't a pandemic in the 80s before you had the internet.' Perish the thought...

I'm not generally the kind of person who feels bored. I can usually find a way to amuse myself and my love of listening to music keeps me going when nothing else will help. This week though, I've felt an oppressive sense of time moving at glacial speed. At times I've felt restless, unmotivated and generally in a slump. I've been bored, but couldn't be bothered finding anything to do. There were a million things I *could* do, if only I could be arsed. I couldn't find it in me to be arsed, though. 

When you live with a mental health problem, it doesn't give you time off just because there's a global pandemic. As annoying as it is and as much as I wish it wasn't so, I'm still a mental. So when I can't be bothered to do the garden, or making a meal feels like it's just too much, I never know whether that feeling is down to simple lockdown inertia or whether I'm starting to become depressed. Same with the ever present anxiety that's in the air. Surely it's reasonable to feel anxious at the moment though? 

I'm still getting up early, getting dressed and putting on a bit of make up every day. Not because I'm going anywhere, but to give myself a sense of normality. I feel a strange sense that I no longer exist. Almost as though I only exist when I'm out and about and that when I'm hidden away, I'm nothing. It's an odd feeling. Like everyone else, I've no idea what the next few weeks has in store for me. I'm hopeful that we can avoid becoming ill and that we don't lose our minds during lockdown. 

Sending you all my best wishes and good luck for the next few weeks. I look forward to catching up with you soon. 

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...