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!

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.

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!

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

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...

God has healed me!

On Saturday November 3rd, I woke up without the gluey heavy feeling I've lived with since February 25th, 2003.  I believe that God miraculously healed me in the night - and healed me so that I could be part of presenting my Just Kai work at The Justice Conference!  Which is, itself, super-encouraging, quite apart from the wonder of the healing itself.

Here's what happened.

A lovely Saturday

Yesterday was a fun day :-)

Martin and I had our first go at bottling mussels.

2kg mussels ready to go

One month trial of high protein, low carbohydrate diet for CFS

In recent years there has been some research* indicating that the cells of people with CFS may not get energy from glucose as well as regular people do, but may still be able to derive energy normally from protein.  They didn't look at processing of fat (the other main thing we get energy from), although at least one other study indicates there may be issues there, too.

* this research is explained in more lay terms here and here.

With this in mind, I decided to do a six-week trial of a very high protein, very low carbohydrate diet.  If my body was functioning like the cells in the trial, this should give me more access to energy at a cellular level, which ought to translate to more perceived energy :-)  The idea was to be as strict as I could manage with this diet then, if it proved helpful, to gradually figure out how strict was necessary.

Assisted Dying in New Zealand

Update: the submission deadline has been extended.  Submissions now close at midnight on Tuesday, March 6th.

A bill proposing to introduce assisted dying (i.e. voluntary euthanasia) is currently being considered by the Justice select committee of the New Zealand parliament.  Were this legislation to be passed into law, assisted dying would become available to anyone with a terminal condition who is expected to have less than six months to live, as well as to anyone with a grevous and irremediable medical condition.

I am against this and am in the process of writing a submission to the committee to say so.  Could I encourage you to do the same?  You can read information about the bill (along with some concerns about it) here or, if you're super-keen, read the full text of the bill here.  You can make your submission here.  Submissions close February 20th.  Parliament has prepared a guide on making submissions which you can read here.  You don't need to say anything more than whether you oppose or support the bill in question, although they prefer for you to give your reasons in moderate detail :-)

A living sacrifice

In recent weeks I've been feeling like God wants me to take new steps in being a 'living sacrifice', a term Paul used in his letter to the Roman Christians that we have recorded in the New Testament:

I appeal to you therefore, brothers and sisters, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship.  Do not be conformed to this world, but be transformed by the renewing of your minds, so that you may discern what is the will of God—what is good and acceptable and perfect.

Romans 12:1-2, NRSV

I feel like God is calling me to be less conformed to the patterns of living I've settled into and to be more deliberate in living for him in terms of how I use my time.

Grieving things I've lost: I'm not part of anyone's world

A few weeks ago I listened to an interview with Jennifer Brea on living with CFS,*  in which she mentioned the ongoing grief of living with chronic illness.  Again and again things don't happen in your life that do happen to the well people around you, so again and again you find yourself grieving new losses.

* the interview's well worth a listen, and what I'm discussing here is only a tiny part of it.

I really resonated with that, but I'm not so sure that was a good thing!  Ever since I've found myself ever-so-much-more aware of the background grief I think I always live with, and the thing that's hitting me the most right now is that I'm not part of anyone's world.

I don't mean no one cares about me - I know lots of people do! - but almost no one contacts me, people almost never turn to me when they're wanting to talk something through with someone, and certainly no one thinks of me when they're wondering who they could do something fun with.

My disability isn't only a social construct

I keep on coming across comments like the following:

Disability is a social construct. It exists due to the society in which the person lives and not because of the impairment someone might have.

Such statements are kindly meant and are true to a point; but they greatly overstate their case and, in doing so, make me feel like a freak.  Yes, society can be structured in such a way that certain impairments cease to matter.  But in my case, no matter how the society around me was structured, my disabilities would exclude me from most of it.  By denying that reality, this statement about inclusion leaves me feeling seriously excluded.  If someone asserts my disability only exists because society hasn't accommodated it, yet I can think of no accommodations that could overcome my disability, what does that say?  That my disability is just in my own head and I need to get over myself?  Or that, even in the world of disability rights, no one has realised that people like me even exist?

Have I accumulated too many 'have tos'?

Recently I've been finding it really hard to fit everything I want to do into my schedule, and doing anything spontaneous has become well-nigh impossible.  Grump!  I think I know what the problem is and I'm one week into a trial to test my theory and see if I can improve things.

I think the heart of the issue is that I've accumulated too many 'have tos'.  I have too many regular activities, meaning that there's no space for anything else.  An easy mistake to make when you only have four hours a day to get everything done, but a highly problematic one!

What should I do about this?

In the first instance, I've come up with a fairly simple plan.  I've listed out all the things I do regularly and had a think about what I can stop doing.  My idea at this stage is to cut out as much as I can, with the expectation that I'll later add back in anything I'm really missing.   I've come up with an 'a list' of things that will be fairly easy to cut out and a 'b list' of things I could probably cut out if I had to.  The 'a list' basically consists of things that don't really need to be done, whereas the 'b list' has on it things that do need doing but could be done by someone else.  My hope is that I can fix my problem without increasing anyone else's workload, so for the moment I'm simply stopping my 'a list' things.  That should save me just over 15 minutes per day.

I started trialling this a week ago, with the expectation that I'll try it for 6 weeks and see how it goes.  One week in I'm hopeful :-)  It's hard to tell as it was a week in which I was uncommonly ill, but I really appreciated being free of the mental work of trying to fit everything in.  That was probably worth at least as much as the actual time saving.

In case you're interested, I've listed below my A and B lists of activities I could give up, as well as the full activity list.

Review: Ecosa memory foam mattress for someone with limited mobility

To my regular readers: this probably isn't of much interest to you.  I'm putting it up in the hope people with health issues similar to mine will find it whilst investigating if a memory foam mattress is suitable for them.

About me

I have severe CFS/ME, meaning that I am very weak.  I spend a lot of time in bed (20-21 hours per day), so a comfortable bed that minimises back pain is very important to me.  I use a bed pan (on my own) a few times a week and occasionally am too weak to roll over in bed and need my husband to help turn me.  I try to do lying-down exercises on my bed three times per week.  I'm very sensitive to stimuli of all kinds (including touch) when I'm tired.  My ability to control my temperature is compromised so I can easily get too hot or too cold.  I weigh around 110kg, my husband weighs around 85kg and we sleep in a Queen sized bed.