Yes I am still around…so sorry for the huge gap since my last post!
I hadn’t intended to vanish off the face of the Earth, but life happened. Job changes, a long-running illness and sadly the loss of a close family member in January kept me busy in ways I hadn’t anticipated. Grief is a strange and unwelcome presence, I’m discovering. It’s still early days so things still feel very bumpy but I’ve missed writing the blog and have only just responded to the many, many questions you’ve been asking so it’s definitely time to get back on it!
Still alive…and still kicking!
So in terms of health, my shunt is still behaving itself which is fantastic. The fact that in every other way my life has felt a bit all over the place but my shunt hasn’t really done anything other than keep me going is testament to what an amazing little piece of equipment it actually is. I came down with ‘flu (proper, knocks-you-sideways ‘flu) after forgetting to get my ‘flu vaccination last year. Rapped knuckles for that one…having ‘flu at any time is horrible but with hydrocephalus it is officially ten times worse (I can safely say that having had ‘flu both before and after hydrocephalus!). It ended up turning into a bad chest infection which ended up with x-rays at the hospital but now it’s gone and I’m feeling back to my ‘normal’ self. ‘Normal’ will always be written in inverted commas when applying the term to myself; I don’t think what I feel day to day with hydrocephalus is ‘normal’ in relation to the rest of the population but I’m used to it…so it is normal for me.
One of the very positive things that has happened is that I’ve started rehearsing with my band again. I have sung in many bands over the years (being a singing teacher and all that) but my favourite band, the country and Americana-based one called Family Nash, split when we just became too busy with our schedules.
Terry (guitarist) and Jo (or Banjo Jo as we call her!) at our first rehearsal for years. We eat apples during our breaks. We’re not very rock and roll.
I was in and out of hospital an awful lot at the time so couldn’t really be relied upon too much when it came to gigging…which is a not very helpful when you’re the lead singer. Anyway, Terry, Jo and I decided it had been long enough and gathered at mine the other week to see how many songs we could remember. Quite a lot of them as it turned out! We chugged out some tunes by the Dixie Chicks, Dolly Parton etc. and had a good catch-up in the process. We aren’t planning to gig soon but just playing and singing the old tunes (and some new ones) is enough for us at the moment. If I can work out a way to post up a video or tune on here, you can have a listen for yourself!
In terms of the work with the shunts…well that’s been keeping me busy too so I’ll cover everything regarding that in the next post!
Keep sending in your questions and I’ll keep doing my best to answer them. I’m thinking of starting a forum on here (or elsewhere if it’s not possible to add one to this site) so you can all talk to each other as well as me. What do you think?
It’s a Bad Head Day. Most people have Bad Hair Days. Well, I have those too…notably for about six months following a surgery when the surgical team have shaved off half my hair. But Bad Head Days are more frequent. Today’s has been caused by the weather. My head does not like changes from high barometric pressure to low barometric pressure. Not only do I feel pretty rough, but I had my boss call me up this morning (I work from home – the only way I’ve been able to hold down a job for any length of time) to let me know that last night, during my work shift, I made four errors. This is odd for me. I’m usually uber-careful and double-check everything before I send it off as I am fully aware that a shunted brain doesn’t always produce perfect work. I double-checked my stuff last night too but seems that it didn’t make an awful lot of difference.
My Sofa: My Friend (on days like these). Hoshi the cat (curled up on the right) is also My Friend.
Today I am mainly on the sofa with a throbbing head and feeling glad that I don’t have to go anywhere/talk to anyone (apart from the cat) today. Well, until I start work tonight. Holding down a job with this condition is damn hard. We look fine, we seem fine – and out of nowhere, we can go a bit strange, with no warning. Working for myself and from home has been a Godsend for me. It’s literally the only way I’ve managed to always work, throughout the whole thirteen years since my diagnosis, during the periods when I’m not very ill or having surgeries. I was employed in the years leading up to being diagnosed and for four months afterwards in a high-pressured, high-energy job which I loved. I loved the buzz, the stress and pressure even and the salary! It only took three weeks after being back in the office after an absence of seven months (the amount of time it took me to deteriorate, be admitted to hospital, be kept in, have the barrage of tests that ensued, have the major surgery and recover sufficiently) to realise that keeping that job was no longer an option. I was brokenhearted. My company were too and very generous and supportive but it was a no-brainer (pun very much intended).
I will post about how I made the transition from Sales Administrator to Vocal Coach another time – it’s a story of determination, thinking outside-the-box, perseverance – nah, not really. It’s a story of complete panic and desperation. But the former sounds better. Right, my brain is positively staging a sit-in protest now (or rather, a sit-on protest; it’s refusing to allow me to move from the sofa) so I’ll post when I’m feeling better. Which will be tomorrow. That’s an order, brain.