Sorry I haven’t updated for yonks, but I had forgotten during my nearly-two-year-surgery-break how long a recovery takes! Because I didn’t end up having a massive surgery I thought I’d bounce back quickly but the very unexpected deterioration after having the ICP bolt removed obviously made its impact known.
I can’t believe it’s December; the year seems to have had a ‘blink-and-you’ll-miss-it’ effect. I’ve had two more trips back to hospital since I left; the first for another pressure adjustment (downwards) and the second one just a check-up to discuss things. The plan is to leave me alone over Christmas and the New Year (hurrah!) and try another adjustment in January. I’m currently on setting eleven; my surgeon thinks I’ll end up somewhere around setting eight. Funnily enough, when I was on setting eight before, between the end of 2009 to 2010, it was the best I had been. That was before two shunt infections decided to have a bit of a party inside me and to royally screw everything up. But that setting eight period – it was indeed good. So fingers crossed I’ll get back to that place but it’s going to take about six months to a year apparently. You can look at that one of two ways; six months to a year of feeling ill, tired, nauseous and frustrated. Or six months to a year before I’m back to my best-ever physical state. Can you guess which viewpoint I’m going to adopt?
I had another meeting with Lewis Thorne last week too; I like his working style – he was wearing jeans with very funky Argyle socks pulled over the top and no shoes. A man after my own heart; comfort equals a productive work day. When I’m working from home (which accounts for ninety per cent of the time), I wear slippers and lounge wear.
Stylish of course – I can’t work if I look and feel like a slob (which is never, just for the record!). But the second I come in from a meeting, I strip off my smarter work clothes and get comfy. It’s a bit like a cluttered home reflecting the state of your mind. I’m a bit of a minimalist as I cannot stand clutter. I have enough furniture in my home with ‘touches’ to feel homey and cosey. But that’s it! Anyway. Back to Lewis and his socks. We had a good chat about everything and went over the more problematic areas of the shunt donation scheme. Lewis is brilliant at making things seem do-able. I asked him if he thought I was worrying unnecessarily about one particular issue and he said yes. I kind of knew that all along but it’s good to have clarification! We each have our ‘homework’ list of things to get on with and will meet again in January. And I think this time I’ll take my slippers with me. We did have a moment regarding the proposal for the Vietnamse government where we looked at each other with realisation of just how big a task this was going to be. We may be passionate about this but we are also realistic! Just getting hold of the information we need in order to put together the figures for a water-tight proposal to really persuade the health ministry to invest in the treatment of these babies and children is not going to be easy. And of course there is no guarantee that it will work. But nothing ventured, nothing gained. I shall update more when more has happened because at the moment it’s just lots of phone calls, emails, figures and reports which is on the face of it pretty boring!
So it’s December, it’s nearly Christmas, my decorations are nearly done (bought the wrong-size tree lights so need to get the right ones today) and I’m loving the Winter weather, cosy evenings and candles. I’ve decided to do the Photo-A-Day Challenge for December; my friend Jolene does it often and I always think ‘I really must do that sometime’.
Then I go to the fridge and see Mr Samandouras’s quote (written on a Post-It) stuck on my fridge; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Having a chronic condition can make one more prone to procrastination – well, it is hard sometimes to get all motivated when you actually feel like throwing up – but it’s just a case of frequently referring to quotes like that to keep your mind on the ball. The photo challenge is detailed here ; you simply take a photo a day based around the one-word description set for that date. Sometimes you have things to hand so it’s quite easy. Sometimes you need to use your imagination a little more. So I started it on December 1st.
And I’m just finding out how difficult it is to take a photo a day when you have a Burmese cat around who a) always wants to be in shot and b) always wants to be in shot. What I have also found out is that doing it really makes you view the world in a different light. You start to look at your surroundings and try to figure out if they’d work as a photographic composition.
As you can see, Hoshi insisted on being in shot on the second day. She doesn’t like candle flames so the first day was easy. I’d already removed her three times from that bannister as she was ruining the angles and lines I liked in that shot; in the end I gave up and just let her sit there and scowl at me. I’m yet to upload yesterday’s and today I don’t know what to do; the title is ‘In The Cupboard’; all I have in my cupboard are tins, teabags and a loaf of bread! Thinking cap on. I’m very tempted to let Hoshi have her way with this one and just let her get in the cupboard. But that would be too easy. Shame I don’t have access to a fake plastic skeleton…….
Good to have you back and your attitude is brilliant. Good luck with the onward progress,MM ?
Why thank you very much! It’s hard to feel worried with Christmas on the way really. Just show me a set of fairy lights at any time of the year and I’m happy!
Oh, let it shine…
There is nothing like a dose of Jordan to pull me from inside my own head(case), put my self pity in the closet where it belongs and kick procrastination to the curb! Your daily photo assignment is joyful inspiration, and my felines, Finn & Puddy, are already preening for the camera. The sun is breaking through the gray sky making way for a bright, albeit comical, day! Happy Holidays, Jordan. Keep shining!
Aww what a lovely thing to say! Thank you. Are you going to do the photo challenge then? It’s easy to catch up at this stage; I wouldn’t recommend starting it after 27th December. Happy holidays to you and your cats too. x
It’s great to have you back posting again. Have a great Christmas and New Year.
Hi Steve, well thank you very much! I’m still a little behind but I will catch up on the posts shortly. Have a wonderful Christmas and New Year too! Jordan x
hi Jordan i’m Laurensia (but you can just call me laura! :)) i am a 17 year old indonesian living with hydrocephalus, with 10 surgeries so far (one for hernia nine for hydrocephalus) i love reading your blog! its very informational and funny ^_^ so far ive survived 2013 and 2012 without a single surgery! (might be due for one this year… i hope not D:) i have a question to ask you, how long does a shunt usually lasts before we need to go back for repairs? and what symptoms should i look ot for? xD
Hi Laurensia, thank you for your comment! Well done on getting through your 10 surgeries! My last surgery was my 20th – funny how we keep count of them, isn’t it? Regarding shunt life, it really depends on the make of the shunt, the individual who has the shunt and what type it is (programmable or non-programmable). Non-programmable shunts do seem to last longer because they don’t have the valve and they also don’t have doctors adjusting them a lot so once they’re in the body, they’re pretty much left alone. Theoretically, once a shunt is inside you and you’ve passed a year with no problems (risk of blockage and infection is highest within the first few months), they should last about 8 years. However, my longest shunt only lasted four years and I have shunted friends who have lasted 15 years or more with no problems! But my times spent in hospital have generally highlighted that the majority of other patients seem to have problems every 5-7 years. Symptom-wise, I really believe that ‘gut feeling’ is the most reliable! We can suffer from ‘normal’ headaches like any other person but when the shunt isn’t working well, you do just seem to know. For me, it’s pressure in the head, nausea, tiredness and not wanting to move around. For others their vision may be affected. I think anything that worries you should be checked out. Don’t leave it if you’re ever worried! Jordan x
Hi Jordan, l started following your blog after I had my shunt inserted June ’13. I’ve been headache free since until about 5 wks ago now I’m in agony! I spent 5 days in hospital coming out on 22nd Dec having had a ICP which showed ‘nah dah’. I’m back 2moro to see Mr Watkins n Simon. This is still all very new to me, reading your blog and getting in contact with Shine on Facebook has helped a great deal, Thank u! I’ve been wanting to do a blog for years….u’ve inspired me just as u yourself was inspired!
Take care n Happy New Year! Shana..
Hi Shana, thanks for your comment. So sorry to hear that things have taken a nosedive lately. So you’re on Team Watkins too? ?. Sometimes it takes time to find the answer. Do you feel worse at any particular time of day? I am a bit worse in the mornings right now as my pressure is a bit too high. Like you, my ICP session in October didn’t show anything drastic but I’ve had one pressure change since I got home and am soon having another and am starting to feel better so don’t get disheartened. Sometimes you need to grit vour teeth and give it time. You can’t go wrong with Mr Watkins and Simon: they never give up! Handy tip: have you tried those migraine blue gel headache strips for your forehead? You leave them on and they stick to your skin and are cooling. I swear by them. Good luck for tomorrow! Jordan x