This week

At the station yesterday, I heard a man's voice coming from behind me, saying my name. I turned round and there was no-one there. I looked up at the tannoy, wondering if that was where the sound had come from. Feeling anxious, I boarded the train and put on my headphones. As the journey progressed, the whispers began. 

"She's on a train now."

"Why didn't she jump instead?"

"Nobody would miss her would they?"

"Fucking useless bitch!" 

I closed my eyes and concentrated on the music. When my mind is playing tricks on me like this, one of the (few) positives is that I can hear things in music which my ears and mind don't generally process. It's a kind of "deep listening" experience. It's also a brilliant distraction from the whisperers. 

This week has been bloody awful. I've been struggling with my mental health; fighting with my brain to win control of my thoughts and feelings. Voice hearing and disorganised thinking can be difficult to live with. I take medication, lots of it, but the symptoms still poke through, particularly in times of stress. I reminded myself to have a rest day and book an appointment with my GP. 

I'm lucky because although my mental health problems have taken a lot from me, they haven't robbed me of my ability to communicate. Writing this kind of thing is really helpful. Sometimes people get in touch and tell me that they're struggling too and it helps me feel like I'm not alone. Okay, my life is nothing like it used to be, but I can function up to a point. I can't work at the moment and my doctorate is on hold but I can cope with everyday tasks like shopping and cooking. These things were completely beyond me not long ago, so I see this as a sign of progress. 

Getting through each day is a challenge right now, but I'm hopeful that things will get easier. My goal is to return to my doctorate in September. I'm not sure whether that'll be possible and sometimes I wonder whether I'll ever work again but I have to keep trying and keep hoping. 

  

 

 

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