Right. Ages ago I said to the Facebook Young Stroke Survivors Group that I’d put up a resources page collating a lot of what’s been said about what was useful. I also asked them for things that they found useful. They’re on the new resources page – look up, see the tab?
No posts for ages and then suddenly three things to say. This post has three points: stents may be bad, English speaking nurses are required and facebook support is priceless.
Humans spot patterns even when there are none. It’s part of what we do to make sense of our world. It helps us to feel order.
A few years ago, it seemed like every time I went on annual leave I’d come back to find another member of our team had taken a new job. Now it’s measured in time since the stroke.
Exactly three months (to the very day) later, I went back to work; exactly six months (to the very day) later, I left said job permanently; and today, exactly nine months on, my boss left my old work too, and a dear person in my circle of friends has died, many decades too soon for my friends to bear.
Apologies for the post below.
Written in a hurry and posted fast… on the wrong blog! Should have been on www.goldordust.wordpress.com!
Oops!
————————————–
Oops. A quick update.
I saw the neuro (Hospital 2/Dr 4) on May 3rd, and came off the warfarin. The difference is quite amazing: I now need so much less sleep! Before, getting beyond 10.30pm was a chore. Now I see midnight and 01.00 roll by and think I need to think about sleeping! It took me a few days to notice that was happening, and another to work out why!
And I’m suddenly back to walking 18,000ish steps a day without even thinking about it. This is the best thing, to be honest, as I’m desperate to lose the weight caused by utter inactivity and way too many lovely treats during the first few months. Vanity, I know, but also cost effective – I’m simply not buying larger clothes!
baby aspirin
So I’m glad to have switched the high doses of warfarin for a forever daily baby aspirin. Though my new friend from Chaseley (see a few paragraphs ahead) says I may make up my own mind on that one a little further down the track…
I had an MRA (an MRI of my head an neck) on Friday last (“Er, you’ve had quite enough CTs in the past few months, let’s do an MRI”). I was hoping this meant I’d be in and out in ten minutes. But no, there’s the whole rigmarole of hospital gowns and cannularsfor contrast dyes – though without the slightly weird effects of the CT contrast. But the staff at Hospital Number 2 are just so nice. I don’t know whether it’s just an utterly different culture to Hospital Number 3, but the staff certainly smile more and that makes a massive difference.
And yesterday, well that was a freak thing… I went to a She Means Business Network Lunch. It was lovely. Set in a priory situated in rolling hills; greeted with champagne; got to know some great people a little. But bizarrely, I sat next to the CEO of a charity that looks after people who have brain injuries of various kinds. So she was fascinated by the stroke and I was keen to hear about how those who have the worst kind of outcomes and need the most rehab might be supported.
The answer is that, outside the NHS, support is often from charities, and there aren’t many like The Chaseley Trust. They work with anyone over 18 on a residential, day care or rehab basis. And about a third of their residents are former Army, Navy or Air Force.
So if you have a spare tenner and you’ve been wondering what to do with it, maybe hit the graphic above and go to the bottom of the resulting page, click the donate button, and give it to Chaselely? Like my stroke, it’s not very sexy, but it’s a very good cause.
In the first few days of this blog, I wrote a hospital kit list, and said I’d update it sometime with my definitive list, and never did.
Last night my friend’s 2 year-old daughter was taken to Hospital Number 3 with pneumonia. She’s MUCH better today, following large doses of IV antibiotics. One can’t do much to help in these situations. Except, it turns out that I did know there was one thing I could do. A bag full of essential kit for her mum, informed by relatively recent inmate experience. So here it is, finally, my ultimate ‘get them this’ list for people in hospital (or staying with their kids in hospital).
Six months ago today the stroke started, right up there in the (lovely) Chief Operating Officer’s office.
Tomorrow, I will run my last big event at work, pack up my desk, and have some drinks with my colleagues and friends on my last day with the company.
Someone from my family has been with that company for the last 43 years, with up to 3 concurrently at times, and I’m leaving. I’m actually saying goodbye. And I’m about to begin another new chapter. Starting with getting on a plane first thing the next morning…
Tuesday is my last day at work. We have a big event during the day (which I was asked to stay for) and then my leaving drinks in the evening. I was thinking I’d make an exception and actually drink a bit. But the dilemma is this… I have bloods being taken at 0900 the next morning. Probably the last ones before I next see the consultant. As I want to come of the drugs now – it being six months on Monday – I don’t want a dodgy blood result because I had a few glasses of bubbles.
Hmm, maybe I should just move the bloods appointment..!
Well, after three phone calls from Wales, a thoughtful gesture of someone checking if someone else had a warfarin stock, we nipped into A&E and they gave me three days supply in under 45 minutes. Am growing to love the provinces.
There was a moment though. They came back with a cute little bottle containing 3x 3mg tablets (blues, for those in the know), because I said my dose was 9mg. I had to say, “Um, it’s 9mg a day.” They disappeared and came back, “That’s quite a hefty dose, are you sure?”. Um, yes… They were great though.
I’m away for the weekend, in Norn Iron. I therefore dutifully decanted 6 days warfarin (even though I’m only away for 3) into the cute little pill box my friend Patricia gave me for just this purpose.
I arrived in Norn Iron, and I can only assume the pill box is still on the bed where it fell, presumably, as I packed between the small case and the slightly-larger-than-the-everyday-one handbag.
