The year of trusting in God

I've been telling people that 2024 has been, for me, the year of trusting in God.  Of course, that's what every year should be (!), but this year has been different as my capabilities have been so reduced and so unpredictable, and I've had to trust God in that uncertainty.

When I got my concussion back in January I went rapidly downhill over a week or so, to the point where I was only out of bed around 3 hours or so in a day, much of that just sitting in a chair not doing much.  Previously I'd been averaging around 7 1/2 hours in a day and being pretty active within that, both mentally and physically.

Initially I was in survival mode (and not doing very well at all until I started getting help from the concussion service).  I had to drop pretty much all my Just Kai work, although I did manage to organise our annual summer team picnic and, with extensive help from Christine, get out useful Easter recommendations.

Holiday at Shakespear Regional Park

Last Thursday Martin and I headed off for a camping holiday at Shakespear Park.  It was remarkably easy to get there - biked to Avondale train station, train to town, ferry to Gulf Harbour and about 40 min bike to the campsite.  And, whilst I still have a number of concussion symptoms, this was something I can now comfortably achieve :-)

Us Avondale train station with our stuff:

Two concussion milestones

I posted this on Facebook this afternoon, but thought I'd put it up here as well for friends who aren't on there.

I'm celebrating two concussion-recovery goals since last I put anything here:

1. Last week I did a 1h20 walk :-) That was my goal for walking, so I'm no longer doing carefully timed walks with steady increases and can just walk when I actually want to for as long as I want to. Hurrah! When I started with the concussion service I was only doing 7-8 minutes (and before I got help from them there was at least one day when I couldn't even walk from our front door to the fence, which is maybe 10 meters?), so it feels fantastic to be able to do so much now. That was around 9000 steps!

2. Today I did 1h20 on the bus (made up of three separate journeys, but I was walking all the time I wasn't on a bus, so was in motion a smidge over two hours) with fairly minimal nausea. I got home an hour and a half an hour ago and the nausea still hasn't 100% settled BUT I'm encouraged that this means I should be able to manage a trip we have planned in late August. That will involve 30 minutes on the train, a brief break in town, then 50 minutes on the ferry. I think what I did today was a bit more challenging than that (mostly because I kept walking all the time I wasn't on the bus so the nausea had no chance to settle), so I'm pretty confident we can go ahead with our planned trip :-) I'm also hoping to do a 4 hour bus trip in October (Whanganui to Wellington) - that may still take a bit of preparation, but it feels do-able. Hurrah! Only 10 weeks ago I did a 15 minute bus trip and was shocked how nauseous I got, so I'm really pleased by this progress.

I am so happy. Praise God from whom all blessings flow!

The photo above is of a sign by the Lower Albert St bus stops that always amuses me. How many phone calls to the Fire Service were there before that went up??!!

Lastly, the bus trip I did was the entire route of the #18 bus (home to town, town to New Lynn, New Lynn to home). It turns out that that's a very cost-effective way to test your bussing capacity: it was only $4.01 the whole trip - the same as the home to town section of the route costs on it's own!

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 :-)

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

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: 

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 :-)