Still figuring things out

It's two and half years since I got better, but I still feel like I've got a lot to figure out about this new life.  When I first got sick, I think it took around that long to move from being scared through to a place of contentment - and it took periodic reviews of my activities to keep me there.  I guess I shouldn't be too surprised it's taking a long time this time around, too.  It's a big change!

I think one trouble is that I still don't have a good idea how much energy a lot of things will take.  Recently I went to visit a friend in Takapuna.  I spent about two hours with her, maybe an hour or so each way in travel time, and I rested for about an hour at her place before coming home.  I'd expected it to take basically the whole day, so wasn't unduly distressed at the two hour visit taking five hours - and we had a really good time together :-)  What I hadn't expected was being incredibly wiped out almost the whole following day as well, so suddenly my fun two hours had cost me almost two entire days...

And then I felt stink, and lonely - if visiting one friend 'costs' so much, how can I ever get around to visiting all the people I miss?  Time already feels so tight.

That was probably mostly because my expectations are still all a bit all over the place.  After all, no one else gets to do things that take two whole days all that often, either!  But I hadn't realised that was what this would take.

That's kind-of prompted a bit of a review of my time, though.  If things that matter so much to me take so long, I really do need to take steps to make sure they can happen at least sometimes!

A fun day in lockdown

After a string of pretty tired days, today has been lovely :-)

It started with sourdough biscuits and gravy for breakfast (biscuits in the American sense, and the sourdough made using the pulp left over from making soy milk).

 

Abiding in God

As I said earlier, I've been lower in energy since our holiday in mid-June - although the reduced energy is carrying on so long it may be simply because of winter, rather than the holiday.  The last 2-3 weeks, though, I've been much less frustrated about it all - I've been mostly content, albeit punctuated with the odd patches of extreme panic!

One thing that has made a huge difference is a 'breath prayer' I've been praying.  If I wake in the middle of the night and can't sleep, I start saying "You are the true vine, help me to rest in You."  If I find myself fretting during the day, I do the same.  God has used this to really transform my attitude :-)

Recent happenings

A few recent bits and pieces from me...  In general, physically I'm getting stronger and stronger, although mentally I seem to have crashed quite badly over Christmas.  I'm struggling to face any 'thinky' tasks.  I was working quite hard on Just Kai stuff in the lead-up to Christmas and am hoping I've just overdone it a bit.  I'm trying to leave the thinky things alone for a while and hoping things will come right soon; it does seem a bit better today and yesterday.

But here's some of what I've been up to before and after our Taupo holiday :-)

Friends who are missionaries in Japan came to visit - and brought us yummy Japanese snacks!

Bits and pieces

It's been a while since I wrote anything here.  Life has been quite busy and there hasn't been much time to reflect - which, on the whole, I don't think is ideal!  I've been particularly busy with the Just Kai stuff.  It's still small-scale really, but Just Kai does seem to be taking off: more than a quarter of the people who are now following that on Facebook are people I don't know, plus I've recently been asked to speak at a friend's church and to figure out Just-Kai-compliant catering for a conference next year :-)

But it's been busier than I really want, so I've decided to take this week and next 'off'.  I'm not going to be generating any more Just Kai information (although I did answer one query that turned into a blog post over there) - instead, I'll be catching up on myself a bit and resting :-))

I'm still struggling to manage my energy these days and have 'crashed' twice so far this week.  I kept things a lot quieter today and hopefully that will help!

It hasn't all been hard work, though.  On the 9th Martin and I went out for dinner for his birthday - something we've never done before!  The only other time we've been out for dinner since we first started dating was for fondue in Vancouver in 2003...  It was lovely to be out together.  We went to a Turkish place in New Lynn.

Then last Saturday we biked to Anna’s (which was slightly further than I’d realised, so actually my longest bike ride yet), then walked to a cafe near her place for lunch.  It was really fun.  I enjoyed trying the different things (we all shared meals so we got to try three mains and three desserts) and it was relaxed and nice.  Then we walked back, rested for a bit and biked home.  Biking home was hard - I was really struggling by the end, to the point of being nauseous and having to have Martin talk me through intersections etc - so it was probably more than I could really cope with, but we survived!

On Sunday Martin picked up a new bike for me that he'd found on TradeMe.  It's essentially brand new, having been ridden only twice, and a definite step up from the random bike I've been on thus far.  As our two elderly neighbours commented, it's a 'proper lady's bike' :-)

All the soft toy people fit comfortably in its basket :-)

I rode it along the shared path yesterday, and got so many smiles and cheerful greetings :-)  I’ve ridden that route at more-or-less that time quite a few times and that hasn't happened before: I think the new bike makes me seem more approachable :-) 

I’m getting stronger and fitter and learning lots of things, but it still feels like there's a lot to learn.  At the moment I'm working on trying to get off the bike so that my right foot is on the pedal and near the top of the pedal's arc, so I'm basically ready to get going again as soon as I stop.  I just don't seem to be able to figure that out.  But I've figured out plenty of other things, so we'll get there!
       
I’m enjoying the violin.  I’ve now got two pieces I can satisfyingly just play and two more I’m working on.

I've realised there is no longer enough quiet in my day though - and, bizarrely, that I'm probably getting a bit less sun than back when I was sick!  On cycling days I'm usually cycling before the sun is that strong, plus I'm generally not out a full half hour; then on days when I neither cycle nor walk I often forget to go out.  So I'm working on both of these by trying to spend half an hour sitting in the sun reading on days other than those when I go for a long walk.  I've been enjoying that.

I'm also continuing to enjoy Oakley Creek, where I walk if I don't have anywhere in particular to walk to.  There's one spot where you look down on some pungas, and I love the way they have purple morning glory flowers winding through them, even though I know it can't be good for them!

More milestones :-)

No photos, but I'm quite excited by a few recent developments.

As of Tuesday of last week, I'm playing the violin again :-)  I'd been doing physio exercises to strengthen my back so I'll be strong enough to play it, and I decided the time had come.  I wasn't sure what to expect, but it went reasonably well.  Since then I've done at least 10 minutes practise every weekday, working away at Jesu Joy of Man's Desiring.  It's going well and I've ordered some more sheet music from the library to be going on with :-)

Also, on Friday and Sunday I rode my bike to places I needed to get to, as opposed to just riding it for exercise.  On Friday I rode to the GP for a blood pressure check (it's been a bit high and they want to check it weekly for the next wee while to keep an eye on it) and on Sunday I rode to church.  Both are about 1.5km from home (if that), so it wasn't a huge ride, but neat to be using a bike for transport again :-)

When I started seeing the physio earlier this year, he wanted to know what my goals were in seeing him.  Eventually I came up with being able to:

• go tramping;
• use my bike for transport;
• play the violin.

I'm not at the level I hope to get to with any of those, but I'm delighted to see I'm starting to do all three :-)

I'm sick

I've got some kind of cold/flu thing and have mostly been in bed since Friday last week (that's 8 days now).  I keep on thinking I'm getting better (and yesterday even walked a circuit of our street with Martin) but then I don't.  I have a yucky, gunky cough and runny nose, my head is fuzzy and I just want to sleep.

Martin probably caught the same thing, but he only had one and a half days off work earlier this week.

Maybe periods of illness like this will also be part of my new normal?  I can think of a number of occasions in the distant pre-CFS past where I had 1-2 weeks in bed with a virus or tummy bug.  Now that I'm out in public more again (and now that my immune system is no longer in the hyperactive state CFS likely put it in) maybe that will be how it is again.

Happenings

There's been a lot going on lately!

Two and half weeks ago, our street celebrated Neighbours Day:

Ruby hanging out with Jan and Matylda and their baby, Camellia

Mokoroa Falls

Yesterday Martin and I went for a wee tramp with my long-standing tramping buddies Anna and David.  It was super-nice to be doing something like that again!  We did the Mokoroa Falls Track: one of the few tracks in the Waitakere Ranges still open (most are closed to try and prevent Kauri dieback, but this one has been resurfaced and is apparently OK).  It was about 4km of walking and, whilst most of it was on a very well-formed track or was stairs, around the bottom of the actual falls there was a bit of scrambling to be done.  It was fun!

David and Martin cleaning their shoes as we entered the track

A long way to go

I thought it was time for a bit of an update...

It's a funny time at the moment.  I started seeing a physio about 6 weeks ago, since then exercise has been my main occupation every weekday morning.  He has me doing various strength-type exercises each morning (some 5 days a week, others two or three), plus twice a week I go for a walk for an hour or so and twice a week I go for a bike ride.  The bike riding's been a bit of a shock to the system!  At the beginning I could only go the length of our driveway a couple of times but I'm now doing just under 4km (which takes me 15 minutes) and I'm hoping to be cycling for transport a bit before too long.

In one sense, I've definitely made enormous progress in the past 4 1/2 months.  My physical abilities have gone through the roof.  This is my graph of how many steps I'm averaging per day (the numbers are the average of the two weeks leading up to that day - my steps are very variable per day, so averages make it easier to tell what's going on!)

The numbers are still small, but the graph is just going up and up!

On not being 'there' yet

For some years I have listened most Sundays to a sermon by Darrell Johnson.  I have appreciated his practical applications and the way he so explicitly draws his points from the text at hand; I also appreciate the rich background information he links me to.

He is now retired and I have finished his back catalogue on YouTube, but I found that his church, First Baptist in Vancouver, Canada, publishes all their sermons online.  Last year I appreciated their series on Colossians.  Today I had intended to go to my own church, but was too tired and ended up staying home.  I've listened to all the recent sermons on my own church's website so I turned back to First Baptist and listened to the first sermon in their series Why Jesus says He came.  It was called The Preteen Jesus.

Accessibility

Yesterday I had a GP check up followed by a blood test on the way home.  It's the first time in many years that I've been to the blood test place - since I got sick, all my blood tests have been home visits.

I was pretty shocked by what I saw.

Over these past years I've thought a lot about accessibility as I've more and more come to see myself as a person with a disability.  I think the blood test place was very 'accessible' if you limit that word to meaning 'wheelchair accessible'.  However, I live in an area with a high migrant population, and I was shocked by how inaccessible it was for someone not that fluent in written English.

A bit of an update

Life is a bit of a rollercoaster at the moment.  I'm doing way more than I used to and I'm so enjoying having so much more people contact and so much more independence.  So many things that I used to find hard are easy now.  For all that I do a lot of sewing, I've always hated cutting projects out - the concentration was really difficult and I was always battling through so much pain as I leaned on weird angles to do it.  But last Tuesday I had a project to cut out and it was so unexpectedly relaxing and kind-of meditative that I ended up cutting out my next project immediately after as well!  I'm also ever-so-much less sensitive to noise, light, sounds and smells, which is awfully convenient :-)

Hanging out with friends from high school near Oakley Creek

Christmas

The Sunday before Christmas, Sarah arranged for a couple of friends to come over for carol singing.  It was such a happy time - one of the nicest things we've done in ages :-)

Martin brought through our advent wreath for the occasion

Another adventure

Yesterday we caught the bus to go visit my good friend Anna in Sandringham.  We walked to our nearest bus stop, caught the bus just a few stops to a busy intersection, waited there about 15 minutes, caught another bus, got off at a busy road and walked a few minutes to Anna's house.

I found the walking fine, but the noise at the busy intersection was challenging.  I was very glad for my headphones while we waited there.

Saying goodbye

I feel like I've got a whole new life now.  I still get tired (and am still actually resting a great deal of the time), but it's a different quality of tired: and when I'm tired I can still move and think astonishingly easily.  Only once in the last three weeks has Martin carried me anywhere, and that was more because I was overwrought and overwhelmed and wanted something familiar than because of physical need.  A few other times I've felt really done-in and have considered asking him, but each of those times I tried it myself first, and each time it was vastly easier than expected.

But that's the thing.  All my expectations are wrong.  All my habits are needing to change.  I keep going to put something down on the walker and it's not there; I keep assuming I can't do things and then finding that I can.  It's good, but it's also awfully disconcerting.

On Friday a week ago, people came to collect my shower stool and walker.  They've just been sitting on the spare bed upstairs for a few weeks: I clearly don't need them so it's best they go to someone who does.  And yet, as they were taken away, I found myself crying - really hard-out crying.

shower stool and walker awaiting collection

I am a giant!

Today I saw my GP for the first time since getting better.  I was a bit nervous about going: would the receptionist recognise me, how would I explain to my GP what had happened etc.  What I didn't anticipate was the surreal feeling of being a giant.

Every other time I've been there I've been in a wheelchair.  This time I was walking, so was considerably taller.  I felt absolutely huge.  I even found myself walking gingerly, subconsciously expecting to accidentally trample small people or something!  It was so odd being at such a different height in relation to so many familiar things...

(And, in terms of the actual visit, the GP was very relaxed about my situation.  She wants me to take things slow, not push myself too much and allow myself time/space to enjoy my new abilities :-)  She doesn't think I acutely need physio intervention in terms of my gait, but she will make contact with the DHB physios and see what happens.  She's comfortable with the medications/supplements I've taken myself off and is OK with me gradually coming off more over time.)

15 years!!!

Today Martin and I celebrated 15 years of marriage with a trip to West Lynn Gardens.

A helpful realisation

A few days ago I realised something important.

I've been feeling a lot of pressure to just slot back into the healthy world - and I've been frustrated that people don't realise how intimidating it all is and how it's not that easy.

Then I realised that, whilst there may be people who think that way, the main person who's imposing that expectation on me is me!

Several times recently I've had to let people down as I'm struggling to work out what my energy levels will be like.  I've been really embarrassed to do that.  But everyone I've done that to has been fine with it.  And quite possibly literally dozens of people have told me not to rush things and to allow myself time to adjust.

Actually, it seems like more or less everyone else 'gets' that this is a big transition and will be difficult and take time: I'm the only one who seems to think that's a problem ;-)  And as for thinking I'm 'letting God down' by not just slotting in (and so not being 'instantly healed') is just silly...

Happenings

I've been for a few walks now - on Friday and Tuesday I went to visit two different neighbours who both live across the street from the end of our driveway.  It was the first each of them had known that I was better, and their delight and excitement was fun but also quite overwhelming.  Each time the next day I struggled to get moving all day and didn't do heaps.  I wondered if that was because of being overwhelmed by those reactions, rather than the exercise itself.  So today I went for a walk where I basically went down the driveway, did a loop of most of the flat part of our street, came home and then did a loop around the house.  I deliberately avoided going as far down the street as the house of another friend who is home during the day, so she wouldn't spot me and get excited - I'll save that for another time (although she knows I'm better).  My walk was just under 10 minutes.  I also did some weeding and sweeping outside this afternoon but no overwhelming people stuff.  We'll see how I'm doing tomorrow!

In other news, I'm delighting in this gorgeous orchid Martin's parents gave me for my birthday.