Back in 2022, I bought a new-to-us tent - it arrived looking in excellent condition, but it quickly became apparent that all the white portions of the fly were perished. They looked fine, but ripped on very minimal stress, and the rips weren't really mendable due to the fragility of the fabric :-(
I cut it up, and was left with some blue waterproof fabric from the fly, some heavy-duty waterproof fabric from the floor, and a fine mesh from the inner.
What to do with it all?
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.
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:
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!
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 :-)
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| So nice to be in the cool green, even in this cool weather :-) |
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 :-)
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| banana cake for yummy snacks |
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:
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'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 :-)
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:
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 :-)
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| 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.
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:
On the Tuesday before Christmas I was a bit congested in the evening and had a sore throat - both things that often happen when I'm a bit run down. However, in the morning I woke up noticeably worse, so did a Covid test.
I initially thought: "gosh, that control line came up fast", before realising it was no control line... So I cancelled my plans for the day, told Martin and Sarah, and went straight to bed.
At New Year's we're often encouraged to make resolutions - to look to the year ahead and think about what we'd like to do differently. However, inspired by the daily "Examen" (a Jesuit practise of praying about/reflecting on your day) which I've found so helpful this year, last week I decided to follow a similar process to reflect on the past year instead.
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| the beach where I often go when I want to take time and reflect |
Guided by these thoughts and questions I prayed about the good things that had happened this year and where I'd seen God in those. That included:
