Life, IIH And Of Course Hockey!

I swear in my life……….I’ve never worked so hard. And yet I still can’t understand exactly what it is I’m doing, or exactly where all the hours go. I’m up at about 6am, usually before, and don’t go to bed until around 11pm. I might get an hour or so to relax during the evening………watching television, reading, etc……..but for the most part, I’m working in some way, shape or form. Anyway, whine over, back to how things are going.

Nearing the end of the last school term, just before the summer holidays, my eldest daughter, the one who’s been unwell, and diagnosed with IIH (Idiopathic Intracranial Hypertension…it is IIH awareness month. Please take a look here) had worked really hard to get to the point where she was able to go into school (it was the last few weeks of her time there… not much work, but still quite an achievement given the fact that she’s had one constant headache since the start of October last year) for four days out of five. While I could still see her struggle (with things like her reading, and P.E.) it was also noticeable just how happy she was to be back at school with her friends.

The kids river dipping at Hengistbury Head

The kids river dipping at Hengistbury Head

Both my children love going to school, and always have done, something I’m incredibly proud of, and immensely grateful for. In fact my youngest has already picked out the enrichment activities that she’s going to do when she moves up schools, to the one my eldest daughter has only just started, and that’s not for another three years yet………….CRAZY CHILD!! Where was I? That’s right………how things were, in the last few weeks of term, going so well. My daughter had come off the large dose of steroids she’d been on (something of a nightmare…….both being on them, and probably more so coming off them), while continuing with the Acetazolamide that she’d been on since much earlier in the year. I suppose, up until that point, the pain from her headache had gradually been coming down (from a 7/8 out of 10 to the point where it had got to just under a 6 out of 10) but it seemed to have reached a plateau, with no improvement reported. Just to let you know, I’m a mean daddy………I ask her every day about her head……how much it hurts, what the score is out of ten, has it been any better/worse during the day, if so when and what was she doing. I’m sure she gets fed up with me doing this, in fact I know she does, but I think it’s important to do, to recognise what things make it worse, and if anything at all makes it better. I suppose so far, the only thing that really makes it worse is something she really loves to do……..READING! Which given she’s just started at secondary school, is really not a good thing. Back to the summer.

On breaking up from school, I suppose we had a week or so without really doing very much. We had one day at Moors Valley country park, losing ourselves in the forest, taking on the play trail, hunting dragon and damsel flies, all with great success. The children and I had a wonderful day. But really that was about it, for the most part the kids chilled out, and I got on with my writing and social media work. It was all going so well. Of course though, it didn’t last.

Ten days into the holiday, my eldest wasn’t feeling very well, unusual really. She’d been fine the day before, and gone to bed the previous night with as much of a smile as she ever has. But the following morning her head hurt, the light hurt her eyes, and she didn’t want anything to eat. This went on until early afternoon, when yes………you’ve guessed it, we ended up back at the hospital. As per all our other visits, the staff at Salisbury District Hospital were magnificent, from the paediatricians, to the nurses, to the eye clinic staff………everyone. But it was a body blow to say the least to have to be admitted again as an emergency, one from which I’m probably still reeling, one from which my overwhelming memory is pushing her around the hospital in a wheelchair, because she was so unwell she just couldn’t walk. They ran all the tests, checked her eyes……….finding papilloedema, the swelling from raised pressure behind them. The long and the short of it is that there were conversations with the neurologists at Southampton hospital, with a decision being reached that she should restart on the steroids. Not a good day, followed by quite a few more. The summer holidays that started so well, fell away like a lemming over a cliff. As a family we stayed in for the most part, helping her rest and recover, with the odd day at Hengistbury Head or shopping. She had recovered, to some degree anyway. But always on our mind was what lay ahead, the starting of a new school on the 1st September.

It didn’t take long for the first day to come round. Even without all the illness and everything, it still would have been important, a landmark.

Jaina in her school uniform on her first day

Jaina in her school uniform on her first day

But with what she’s still going through, doubly so. The first day was a success, with just her year group in school, she had a great time and got to know some of the other girls in her class. It wasn’t the first time she’s been there, as there have been a few taster days and evenings towards the end of the last school year. But with such a big step up comes more responsibility and more work, as well as all the fears and worries of starting a new school and being in an unfamiliar environment, all of which lead me to worry even more. But one of the positives from all of this, is just how wonderful, flexible and supportive the school have been about it all. I can’t begin to praise them enough, and long may it continue. Of course they want her to succeed and for fill her potential, gaining great exam results along the way, much as we her parents do. But more importantly to me anyway, is her personality and happiness, something the school at this point, seem to understand, for which I am very grateful.

 I suppose over the last couple of weeks she might have been in to school about half the time. It’s hard from my point of view to know whether I’m pleased about that or not. In many ways it’s disappointing it’s not more, given how well she was doing during the last few weeks at her old school, but given that for most of this year she’s been so unwell, it’s been hard to imagine her being well enough to go full stop. So my feelings on the subject vary day by day……..probably even hour by hour. It hasn’t been helped by hospital appointments. Neurologists last Friday…………..the only new thing is she’s started a three month course of Iron, and another eye appointment at Salisbury later on today.

With all of this going on, getting my eldest to her new school over the other side of town a tsome ungodly hour, getting her sister to school, swimming, zumba….oh yes, ZUMBA! Which by the way, she absolutely loves, my wife working hard, at least a couple of days a week going off on the train to London, Bristol, Exeter, etc, at ungodly hours, and not returning until late, my life feels like it’s constantly spinning, a merry go round zipping round at speed,  with me, unable to get off. As if that weren’t enough, there are all the jobs at home….replacing bricks in walls, painting front doors, all the usual, as well as the writing (trying hard to complete the third Bentwhistle book), never ending social media and all the housework. Wow……it’s hard enough writing about it, let alone doing it all.

And as if all of that wasn’t enough, I’ve started playing hockey again, after my forced absence of last season (I did help with coaching the juniors). As well as playing mixed hockey throughout the summer, with the ladies’ 5th XI and the men’s 4th XI, I have attended training for the last few weeks, and agreed to help with some ladies’ coaching (not entirely sure how long that will last…….due to being old and aching rather a lot), not to mention playing half a game on Saturday, and umpiring the other half. I find it’s the only time I can relax, a hockey ball on the end of my stick……… makes it all go away, briefly anyhow. So we’ll see how long it lasts, with my aching body constantly hurting from all the exercise, and my mind swimming from all the places I have to be, and just when I have to be there. Anyhow, got to go. One child to drop off at school, one to take to the hospital. Already tired from being up at 5.30am, working on the computer. Roll on bedtime, that’s what I say. Until next time.



Your thoughts are much appreciated..........Thanks!