Tag Archive for sleep

Losing the warfarin, and Chaseley

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.

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Is it relevant? Balancing the tiredness

Is it relevant? I don’t know, but I thought I’d mention it if you’re reading this because you’re a step behind where I am at the moment.

I’m reminded of Saturday.  I was away for the weekend so I got up at the normal weekday time to set off.  I arrived about 11am – just in time for breakfast, yum!  Then I went to bed for a couple of hours doze. In the late afternoon we pottered around a village full of antique shops.  At 9.45pm my host sent me to bed, on account I was pretty much asleep on the sofa.

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Elvis and the Stroke Clinic

I’ve been hankering after a dog for while; I can’t have one unless I move out of town.  Dogs and working life just don’t go together.  But I am noticing the sweet ones all over the place: in this case on the front of Freshly Pressed? [His name is Elvis, which gives me a scarily good title for this post!]

Elvis by Stefanie Kapra

 

So, to the Stroke Clinic…

I didn’t realise until I was waiting in the Macmillan lounge, next to a day ward full of people having chemo, that I had no idea what happens at a Stroke Clinic. I’m pretty sure strokes and cancer are very different things, but I did have that moment of “um… am I supposed to be here, and… eh?”.  I might even have texted a Joe to say I didn’t really want to be back there at all, and I might have texted CG to say I was waiting in an odd place (CG’s advice upon hearing this: “Keep any eye on them and make sure they don’t try and amputate a limb”).

:-)

The good news was that it turned out to be Duncan taking the clinic (my doctor in Hospital Number 3).  While this means I’ve still not met a consultant at Hospital Number 3, when someone you know and already get on with turns up, well, it makes everything ok.

Lots of you kindly emailed questions over and, here is a summary of what I learned today:

  • Warfarin/Drugs. Stick with it.  There was surprise they hadn’t just raised my dose to 8mg.  I said, “Yeah, I said that, but I also have to assume I don’t know what I’m talking about.” If it isn’t in the middle of the range by Wednesday he said to say, “your stroke doctor said to raise it to 8”.  I’ll see how that goes down…!  We talked about alternatives but warfarin remains the drug of choice.
  • The offending clot. The clot has probably gone, but it takes up to 6 months for the artery to properly heal, so the drugs continue until then.  There is no routine NHS scan in the new year but there is definitely one in January from the trial, so we shall see if that makes any difference.  I’d like to be off the warfarin as soon as possible.
  • Thrombaphilia test. All younger stroke patients get written up for a thrombaphilia test.  The view from my GP and stroke doctor is hat this will probably be a waste of time. They can clearly see I’ve had a dissection (arterial tearing) and “if I tore my artery, I hope it’d clot fast for me too”. I didn’t mention he might, however, prefer to skip the clot breaking up part!
  • Sleeping. I was asked about this before I raised it, but when I said I didn’t much it transpired the question was in the context of whether I lie awake thinking how crap life is!  (Um, “No, I’m just thinking I’d prefer to be asleep.”  This was probed a lot, presumably without the realisation that I know they check for depression at every available opportunity. In the end I short-circuited this one with something along the lines of, “I’m not depressed.  Sometimes I have my moments of ‘this is all a bit shit, but that’s because sometimes it is actually all a bit shit, but that will change’’”.  This got a kiwi smile (tough things to achieve sometimes!) and agreement.  So no worries about sleep from them but – upon request – Tylenol PM was check out for me (on Wikipedia… got to love Wikipedia!) as I have some from the US, and cleared that against the Clex and the Warfarin, so I can take it if I want.  (And I did take half a dose at 3am – see previous post!)
  • Flying/Travel Insurance. I’m cleared to fly.  Airline regulations say 10 days (I didn’t mention this) and stroke doctor happy because its more than a month since it happened. It’s not like I can get a DVT (clot) with all the drugs running through this system.  And on the travel insurance form I say one stroke: we know there were lots of little events, but it is one stroke event…. which brings me to…
  • Brain Stem. So I keep saying that I completely lucked out because the bits of clot only hit my cerebellum.  Three times, but only hitting there meant only losing balance/coordination/concentration type things rather than central functions.  This was lucky.  Today I found out I was more than lucky.  There was a puzzlement when I asked when the numbness would be gone – they ALL knew about the numbness when I was in the hospital – if it had only hit my cerebellum.  So he looked up my scans again and checked my brain stem.  “I’m trying to decide if this is an infarc(tion)”, he said, pointing at a shaded area “It must be, because that would explain why your lips are numb.”  I’m not dwelling on this: all I shall say is that you don’t want any significant hits in your brainstem.  It’s not a good place to mess around in.  At all.
  • Timescales. There are none.  They don’t do them for brain injuries.  For example, “When do you think will the left side of my lips stop being numb?” = “I’ve no idea”.   They literally don’t know; Duncan says people see improvement up to 2 years from stroke (and JBT says 8) which I think is meant as an encouragement.  On the other hand, I’m planning on everything being normal in time for work in January. I said the GP had signed me off until then; he said “If you’re happy to do it, do it… but you can’t just dive in.”  I promised a phased return would be planned.  Not least because my colleague Patricia tells me that Capita will force it upon us anyway!
  • Headaches and Neck aches:  You will remember I wasn’t so worried about these (they didn’t worry in the hospital so I didn’t see any point when I got home) but some of you were… Neck: “You tore an artery in your neck; it’s going to hurt sometimes while it heals.“  Head: “Does it throb or clamp; does the paracetamol work?” Paracetamol and going to sleep do work: he wrote it down and didn’t seem the slightest bit worried either.

So all normal, as these things go, and I don’t go back to that clinic until February, so must be a-ok.

Here’s there weird thing though.  A couple of times before and since this all happened, I’ve felt like I might have slept oddly on the right side of my neck so I could feel it in the morning.  Before the event I assumed it was the remnants of an injury from when I was 7 or 8.  After the event I assumed it was the tear.  But I checked today when he was drawing pictures and the tear is on the left side.  So, whatever’s been going on, the tear was, and always has been, silent and unnoticed.

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A bit of give and take and give (to Children in Need)

Um… so, it’s 02:29 and I’m posting on here.  I suppose I ought to explain.

I went to the Stroke Clinic this morning.  I got there for 9am, waited til 10am, was out by 11.30.  I was meeting a friend for lunch at 1, so I walked to the venue and then mooched in the shop nearby to kill the time.  Then had lunch with my friend which was completely lovely. Came home in time to be here at 3.45 for a drop-off of another box of Clexane by the kind lady from the Cadiss trial (most people don’t get through one box; this is my fourth).  Then horrible headache = paracetamol + darkness + sleep required.

I just woke up, 5 minutes ago.

Have only just sent thank you text for lunch. Have only half written up the answers to the questions from the clinic (will post them tomorrow –  or actually later today). Missed the whole of Children in Need, which I wanted to watch this year.

So… It seems if I take a day, I still pay for it with a huge chunk of time.   Only this time it was immediate paypack.  The headaches are horrible, but is it worth it to have a day out?  Seven hours out of the house in return for the crashing headache that requires seven hours to sleep it off?  Um. Yes.  Actually, I think it is, right now.  I couldn’t do it every day, but once, perhaps twice a week… perfectly manageable…

On the bright side, I just got 7 consecutive hours sleep, which rarely happens!!! And I got clearance on Tylenol PM today.  So I wonder, if I have one of those, if I can sneak in another 5 hours or so before it’s up time…?!! It worth a shot!

Note: If you missed Children In Need too, you can still donate via link above: just one example of it changing lives is here on WordPress.

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