Saturday 13 July 2024

A good week

Sunday a week ago I had a very low-energy day, but the next day woke up full of beans.  It was my Sabbath, where one of my goals is to do what I feel like - I felt like going for a walk.  I was up to 60 minute walks (in terms of the incremental increases I'm doing for my concussion), so decided to explore part of Great North Rd.  In particular, I'd noticed that a walkway that goes across Oakley Creek appeared to be officially open, and I wanted to see "my" creek :-)

So nice to be in the cool green, even in this cool weather :-)

Monday 22 April 2024

A little holiday at home

Martin and I were due a 5-day mini break this weekend.  With my ongoing concussion issues, I found the logistics of planning an actual trip away too daunting - plus, the idea of sleeping in a tent didn't much appeal, as I'm still strapping my arm every night to treat an entrapped ulnar nerve.  So we decided on a 'staycation'.  I mostly had the internet off, and didn't use my computer except for a twice-daily concussion exercise that involved watching a video.  We bought in some yummy food, sourced a good book and had a weekend mostly without plans.  It's been really nice :-) 

banana cake for yummy snacks

Saturday 13 April 2024

Rainbow walks for concussion

As part of my concussion recovery, I'm doing very short daily walks.  For one week I alternated between 8 and 3 minute walks (my CFS doesn't like me doing the longer one every day); the next week it was 10 and 4 minute walks; and this past week it's been 12 and 5 minute walks.

Each walk takes an identical route, which has been pretty tedious, so my friend Anna suggested I take photos of the colours of the rainbow, to give me a focus.  It worked startlingly well, and has been really fun!  Here's my favourite photo from each of my most recent seven longer walks: 

Tuesday 26 March 2024

Concussion two months in

It's a bit over two months since I hit my head, and today it's two months since all my symptoms suddenly became much worse - it feels like time to share a quick update.

Over the past two months I've definitely improved:

  • I've gone from about 3 hours a day 'safely' out of bed to about five (and, in the past few days I've been sticking pretty strictly to 2 hours out of bed in the morning, 1h30 at lunch, 1 hour in the afternoon and 30 min for dinner - it's a bit of a pain, but I feel so much better!);
  • I've gone from needing sunglasses on for much of the day to generally putting them on around dinner time;
  • I'm much less headachey;
  • my concentration is improving: I do a reflection thing every Monday, usually for an hour although since the concussion I've been doing 30 minutes instead.  This Monday that felt distinctly easier than last Monday :-)

I'm finding it hard to be so restricted; I'm also pretty sick of feeling nauseous so much of the time (by far the symptom that bothers me the most).

I've also finally started seeing people from a concussion service, and that's been really helpful.

I had an initial assessment a week ago (90 minutes of questions - even with Martin answering heaps for me, that was exhausting!).  In the discussion with the OT doing that, I realised I'd misunderstood something important about 'active recovery' from concussion.  I'd been trying to increase the length of time I exercised for every time I did exercise.  So I'd started with a tiny walk (just walking a few times around the outside of my house) and then build it up a bit every day (at the peak, building to a brisk 45 minute walk).  But I kept building it up for a bit, then crashing and going back to walking around the house again.  Each peak has been higher than the last, but the unpredictability and the repeated crashes have been really disappointing.  Now I know I need to stabilise at a level for a bit, then increase it, and hopefully that way I won't crash and can just keep building.  So this week I'm doing the same walk every time I walk, and next week I'll increase it by two minutes and stick at that for a week and so on.  After today's walk, I've decided to try taking a photo of something interesting on every walk - it's getting a bit tedious doing the same route every day, so hopefully that will make it more enjoyable :-)

And yesterday I was assessed by a neurophysio, who has given me a bunch of exercises aimed to get my brain used to things moving when I look at them (or staying still whilst I move), which seems to be the heart of why I get so nauseous.  She says that most people notice distinct improvement after around 10 days of doing those exercises :-)

I've also got some instructions to help me improve my cognitive capacity, which involves initially focusing on improving attention.

I feel encouraged to have a concrete plan going forward.  I have been grateful for the kindness of the two concussion service staff I've seen - and of my wonderful GP.  I'm sad to have largely missed summer this year, between Just Kai pre-Christmas work, peri-Christmas Covid and then the concussion.  But autumn has it's delights, too - such as yesterday's quintessentially autumn afternoon tea: the first feijoas of the season from our tree, the first chestnuts of the season from the Avondale market, washed down with a glass of home made kefir :-)



Monday 26 February 2024

Concussion reflections

Life's continuing to be challenging at the moment, and I've found myself often feeling trapped. With the concussion, I can't walk far without nausea and I certainly can't ride my bike or swim; I'm also basically not seeing anyone. I'm trying to put into practise what I've been learning about 'active recovery' from concussion, but it's hard as my CFS-related limits have all been disrupted, and figuring out how to do what's needed for the concussion without over-doing it from a CFS perspective is hard.

Yesterday I decided to go to a close friend's 50th birthday afternoon tea. I knew I'd pay for it, but if felt important.

Today has been a real struggle, with lancing pain through my head and eyes through much of the day; although I did manage a 15 minute walk with minimal nausea, which was lovely.

And I've been mulling over two thoughts through the day:

Sunday 28 January 2024

I have concussion :-(

I fell out of bed on the night of January 16th - or rather, forcefully shoved myself out of bed, as I was was trying to move up higher in the bed but misjudged the direction and moved out of it instead.  I fell on my back, hitting my head and upper back hard.

Initially I thought all I had was a scraped and swollen ankle, as well as a sore right side to my body; it wasn't till later that I started to wonder about concussion.

The first thing was a couple of bouts of intense nausea and blotchy/blurry vision - that happened on the Wednesday when I was getting ready to go camping, and again on Thursday en route to camping.  I initially put it down to a migraine aura, but eventually realised the visual disturbance was quite different.

I wondered about trying to see a doctor in Māngere Bridge, but nothing seemed seriously wrong and, with my complex medical history, waiting till I could see my own GP seemed better.  We Googled concussion and found that the main treatment seems to be rest, which we were doing anyway :-)

image credit: Mayo clinic

I was also basically fine - I had a few specific symptoms, but biked home from Ambury Park comfortably; I was also able to bike to Blockhouse Bay on Thursday and swim for 45 minutes with no problems.

Tuesday 23 January 2024

Back at Ambury Park

Last April Martin and I camped at Ambury Park, the only council campsite we can get to solely by bike :-)  We'd thought it'd be a good place to bring people who hadn't been camping before: it's a fairly flat site, has non-smelly toilets and even hot showers(!), is pretty affordable, and is only a 20 minute drive from where we live, so very accessible for many of our friends.

We tried to get a group from church to join us camping there this past weekend. Various things came up that meant we ended up camping on our own, but friends from church came out to join us on both the Friday and Saturday mornings :-) 

Bird-watching walk with our Saturday visitors: