At last! At long flipping last! I actually feel a little better in the head department. When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries. It has been a challenge sometimes to believe that I would get better but sometimes you have to believe in the positive. Even if you have to force yourself to. Anyway, yesterday I managed to go for a run…the first run in six months. Oh, how I’ve missed it. It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape. It’s not attractive. But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster. My surgeons know I run daily most of the time and have never told me to stop. So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position. I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on. Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate. So I told Saint Simon, who ordered me to come up the next day and he changed it for me. And now my bed is only on one brick and I can stand up a lot more easily. I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it. But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick. I’ve even taken on an extra work shift. Get me.
And now it’s shunt project time! Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted. Usually the children born with these sorts of complications are left with no treatment at all. Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover. Poor thing; she’s missed the children she usually sees over there so much but her health comes first. Health always comes first! Given the change of circumstances Kim has asked if I can deal with the government in Vietnam. Me. Little old me. Oh, God. I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense. But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing! Of course she’ll help me and will be there for support. And obviously I have Lewis on board now too so I’m not doing this alone. But it still scares the crap out of me. I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years). Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least. But then I knew my present recovery was going to be slow and drawn-out – and I was right. But I’m getting there and things are slowly improving. Pigeon steps forwards. But steps forwards nonetheless. I think we can apply that to foreign health ministries, right?
Happy New Year everyone! I hope you all had fantastic New Year’s Eve celebrations and that your hangovers haven’t only just cleared. It seems to be a bit of a crazy start to 2014, weather-wise; -53° in Montana? And nearly two weeks of storms here which have resulted in flooding a-go-go. All we really want here is some nice picturesque snow before the warm of Spring arrives. Sort it out, jet stream. My New Year’s Eve was quiet…so quiet I missed it. Literally. I had Jools Holland on the telly, was in on my own, struggling to keep my eyes open and was upstairs plumping up the pillows on my bed when I heard screams of ‘Happy New Year!’ and the straings of Auld Lang Syne coming from Jools Holland on the telly. Whoops. I missed midnight. Oh, well. I wished Hoshi a Happy New Year, had a small glass of Bucks Fizz, watched the London fireworks on telly (it looked very wet, windy and cold out there) and went to bed. That may sound sad but last year I chose to celebrate New Year on New Year’s Day rather than the previous evening. And it was one of the best New Year’s ever. So this year I chose to do the same and lying in my bed at 12.30am, listening to the gale-force winds, driving rain and hail, I was very relieved to be where I was and not at some party trying in vain to book a taxi. The next day, our planned New Year’s walk across the Downs had to be cancelled; the ground was simply too water-logged to even contemplate it plus it was terrible weather.
Flute, Swedish bagpipes, guitar and a long horn-thingy. Always an interesting musical mix at Paul’s!
Instead, we (‘we’ being the group who celebrated together last year by walking across the Downs) decided to head to my friend Paul’s cottage in the country. It was great. We brought food, they supplied drink (all non-alcoholic as Paul doesn’t allow booze in the cottage) and we spent the day being all cosy and warm whilst the storm howled outside, playing lots of the musical instruments that line the walls of the cottage. Paul is an amazing musician, as are many of his friends, so it always makes for a musical gathering (watch a bit of it here!). I had a go at the cello; my friend used to play it and I’ve always fancied having a go but coming across cellos to ‘have a go’ on isn’t easy….unless you’re at Paul’s cottage. Of course he has one. Only about eight of us managed to get to Paul’s in the end (he’s in a very remote location and the weather was, frankly, shit) but it was a lovely start to 2014. And not a sniff of a hangover.
See everything on the hanging on the walls and around the side of the room? All musical instruments!
I haven’t bothered with New Year’s resolutions because I only have one focus this year which is, I know already, going to take up the majority of my time and energy. So I’m not going to try and lose weight (well I’m not overweight anyway so that’d be a bit daft), stop smoking (I don’t smoke), cut down on alcohol (not been able to drink wine since last August – head doesn’t like it at the mo) or any of the usual resolutions. I spoke to Kim Nguyen Browne of the Vietnam Volunteer Network recently; she’d been pretty ill for a long time and was due to be in Vietnam right this moment, speaking to the government to help Lewis and I with our proposal. As it is, she’s here recovering, poor thing. She said that in the light of how her health is, it might be more time-effective for me to deal directly with the Vietnam Government. Gulp. Don’t get me wrong, I am more than happy to do so to help her out and if it means we’ll get the information we need more quickly. But I am also extremely nervous about doing so as I don’t know how they ‘work’ if you get what I mean. Speaking to top-level governments about things they are doing wrong isn’t something I do every day, really. I am meeting with Kim in a fortnight to have a crash course in schmoozing effectively with Health Ministries staff to get the information I want from them. If I have to bat my lashes, I will do it; if it means getting the figures we need. Kim also has a brain scan for me from Vietnam, which Lewis is particularly keen to get. It is of a little girl born with only half a brain who was successfully shunted at Go Vap Orphanage. Often this sort of complication is overlooked or deemed to be too ‘difficult’ and the child is left to die. Lewis, being a top neurosurgeon, wants to see examples of scans which have been deemed as too ‘difficult’ to treat to see if that is really the case, or if it might be a case of – shockingly – laziness on the part of the medical staff out there. It does happen. Quite a lot, apparently. If we can prove that these children can be treated successfully, that we can help make it cost-effective as opposed to nursing them in institutions until their deaths and above all else, that it is WRONG to just leave them when the economy of Vietnam is currently extremely healthy and thriving – shame these children aren’t doing the same – then we may be able to bring about change, at least in attitudes towards disabled children over there. So….meetings in two weeks with Kim and Lewis and then it’s Approach The Government time! My head had better behave.
Actually, I’ve re-thought the ‘only one resolution this year’ and I think I may actually have two resolutions; my second is to stay in contact with friends. I have lots, I stay in contact with most of them very regularly – but some not so regularly. Not because I don’t like them but simply due to the busy-ness of life. But hey, I have a mobile, Skype, email – there’s really no excuse. So making time for more conversations and meet-ups will also be a priority.
Head-wise, I’m going for a pressure reduction next week (from setting 11 to setting 10) as standing upright after sitting for any time longer than forty-five minutes is proving to be quite a problem. I can’t tolerate the pressure change that goes on! It’s fine when I’m at home but out in public it’s embarrassing as it makes me stop in my tracks and I have to breathe very slowly and steadily to try to bring it under control. So I’m guessing it’s still too high for me. It’s a long, slow process but as long as I get there eventually, what does time matter?