Today I came across this article about living with Fibromyalgia. It should be filed under 'Things I wish I'd known +25yrs ago.... ', oh and also things I wish my GP had known! Thankfully these days such things rarely get written off as 'Yuppie flu' and other dismissive names and are taken seriously, even if still not easily diagnosed.
Most of the time over the years it isn't the really severe stuff I have had to deal with, just lots of little things being out of kilter enough to make getting through the day (and night) harder work than it should be. It would've been reassuring to know that whilst not 'normal' by most standards, it at least had an explanation and I wasn't imagining things/cracking up/being pathetic etc. And I most certainly couldn't fix it all by 'pulling myself together'!
Understanding is usually what is needed rather than sympathy, but it is hard to get that when you can't explain what is wrong. It's hard enough to give yourself permission to be less than 100% when you do know why today your body just isn't going to cooperate, let alone for anyone else to. It might be okay tomorrow, but then again it might not. Frustrating at the best of times, and unsurprising that you can get labelled as 'just putting it on'.
Contrary to accepted wisdom when living with any disability, trying to push through it and 'not let it beat you' is usually asking for more trouble. Instead make the most of the good days, but Don't Over-Do It is a far better bet! Unfortunately what constitutes 'too much' can fluctuate wildly, and generally you only figure out how much it is once you've gone past it. I've decided that living life at 60% is far preferable to pushing for 100% and then crashing down to 10% as a result. If some days then work out at 80% then that's fantastic, but far better to plan for lower and occasionally surpass it than always feel as though you're failing to meet your targets. That doesn't do your morale or self-esteem any good whatsoever, and heaven knows we've enough challenges to those without imposing unnecessary extra burdens. Having said this, it is one thing to know this intellectually - living by it all the time can be another matter entirely! It is hard to remember to rest when you still have energy to do more, no matter how much you know you're just borrowing energy from a future day.
The more I learn about fibromyalgia, the more things make sense. It is so reassuring to know that other people have experienced their 'hair hurting', or getting pins and needles in the arm from holding up a book to read, or a dead leg from sitting on a hard surface for 10 minutes! None of which are the sort of thing you'd go to the GP over on their own (or we'd be there every week!), but they add up and affect your quality of life.
I love the Kiwi Facebook support group I've joined for the supportive community that readily chips in with 'Yes, me too!' whenever anyone asks 'Does anyone else get....' and shares experiences of various medical options and coping mechanisms etc. It makes such a difference to have people who understand what you're going through, but also understands that each of us has our own peculiar combination of symptoms and what works for one doesn't necessarily work for another. Anyone who tries telling someone that they can't possibly have/do/experience something with Fibro/CFS/ME etc is quickly shut down by the admins, that kind of comment isn't helpful, it isn't kind, and it certainly isn't necessary.
So, having got quite a bit ticked off my to do list today, and whilst someone else is cooking tea (yay!) I'm now going to relax, and read my book for a bit because I suspect I'm pretty close to having used up my spoons for the day, and it's only 5pm!
Saturday, July 25, 2015
Sunday, July 19, 2015
Plastic Free July - half way through
I've been away for the last 10 days and not been online much so this is a bit of a catch up...
I got to Day 6 of PFJ and was rather smuggly looking at the empty (plastic) bag that I had sitting in my room designated to hold what single use plastic I couldn't avoid this month. At the time I was tearing out the windows from envelopes so the paper could be better recycled, I was about to head to the bin with them when it sank in that the windows couldn't be recycled as part of the envelopes as they were plastic! D'oh.... So in the bag they went.
I was getting my stuff ready to go away and decided that 10 days of the travel toothbrush that I had been using was too long. It was an aeroplane freebie and for some reason the cover never stays on properly as a handle when using it. Whilst once or twice is okay for brushing my teeth with something I can barely grip I wasn't prepared to go that long, so finally my travel toothbrush got upgraded to a bamboo one too. I was about to chuck the old one and thought well it was hardly single use, but it can't be recycled so in the bag it went.
Similarly my old hairbrush went in, now finally replaced with a bamboo one even if I did have to grit my teeth and buy it in The Body Shop. Having boycotted them since L'Oreal bought them out that was a battle of ethics but it was the only place I could find a non-plastic handle. And then there's the deodorant casing - I've been using my homemade coconut oil & lavender hand cream for deodorant for a few weeks now and so far so good (it soaks into the skin quicker than my kawakawa balm, so it doesn't end up on my clothes), whether it will work through summer remains to be seen.
Not looking quite so empty now then, that bag... When I got back I also added in the accumulated packets and other bits and bobs I'd very diligently hung on to as I travelled. Not quite diligently enough though, when I was at the usual cafe stop on the bus home I was putting the packet the teabag was in in their rubbish when it dawned on me that it wasn't just paper, but plastic lined. Damn. So that means there should be two of those in there - one for each trip. Also on the way down I thought the long journey was the perfect time to consume a chocolate bar given to me, which despite being Whittaker's was in a plastic wrapper, grrr. I'd very conscientiously refilled my flask with green tea in Auckland at Joanne & Oscar's before they took me to the airport so I wouldn't have to drink black tea on the plane or get a plastic glass of water, but totally forgot about PFJ when they offered me a bag of cassava crisps! I refused the lollies later with some contrition.
So what else is in there: several blister packs from tablets (still can't avoid that one unfortunately - the one medication I have come off was the only one that came in a recyclable tub!); the packet and backing off a sticking plaster; the snipped off bits from cutting open a couple of plastic bags; a wee tub I'd reused (I think it had been a takeaway sauce pottle J&O had acquired) to put baking soda in for washing my hair whilst away but it had cracked and isn't recyclable; a bag that had had dried figs in bought before I made my cloth bags for bulk foods from the healthfood shop, and a packet that had genmai tea in it I'd bought a couple of years ago.
Overall though not a bad collection given the bulk of it in terms of weight is stuff I've replaced with non-plastic and don't intend to buy again if I can avoid it. It has certainly been a lot easier this time around as I've done a lot of the thinking and have got into the habit of deliberately avoiding more plastic year round. I have cloth bags for weigh-out goods, I have beeswax wraps instead of clingfilm/gladwrap, I have a metal travel flask as well as metal water bottle, I have a much better idea of what products can be bought in non-plastic packaging and a bunch of recipes I've got into the habit of making that cut out bought plastic wrapped foods such as crackers and snack bars etc.
Over recent months I've got a lot better at making sure all food plastic bags get washed out and put in the recycling - I might not be buying stuff packed like that but I'm not the only one doing shopping around here!
I've also been replacing and/or getting rid of various other plastic items in my life that don't need to be there. Anything still usable by someone else has been passed on, there's no point throwing away stuff that is still useful even if it is plastic! I'd just rather have alternatives around at home, it makes me more conscious of the plastic I do still use when it stands out more. Having a big clearout and reorganization of my clothes a few weeks back meant I could take all my plastic hangers to the SPCA shop for them to use!
I can't imagine ever getting to the point of no plastic in my life, but I can certainly reduce it towards essentials only where there isn't a viable alternative (technology for a start!).One thing I realized recently though is that whilst I've got pretty good at avoiding plastic for myself I need to be a bit more on to it when it comes to things I buy or use for others - it finally dawned on me that when I'm making Phyllis' meals I don't have to use the individually wrapped cheese slices just because she would, I can slice or grate the big block! So she's getting through far fewer of those these days which is a step in the right direction.
Now to see how well the rest of the month goes...
I got to Day 6 of PFJ and was rather smuggly looking at the empty (plastic) bag that I had sitting in my room designated to hold what single use plastic I couldn't avoid this month. At the time I was tearing out the windows from envelopes so the paper could be better recycled, I was about to head to the bin with them when it sank in that the windows couldn't be recycled as part of the envelopes as they were plastic! D'oh.... So in the bag they went.
I was getting my stuff ready to go away and decided that 10 days of the travel toothbrush that I had been using was too long. It was an aeroplane freebie and for some reason the cover never stays on properly as a handle when using it. Whilst once or twice is okay for brushing my teeth with something I can barely grip I wasn't prepared to go that long, so finally my travel toothbrush got upgraded to a bamboo one too. I was about to chuck the old one and thought well it was hardly single use, but it can't be recycled so in the bag it went.
Similarly my old hairbrush went in, now finally replaced with a bamboo one even if I did have to grit my teeth and buy it in The Body Shop. Having boycotted them since L'Oreal bought them out that was a battle of ethics but it was the only place I could find a non-plastic handle. And then there's the deodorant casing - I've been using my homemade coconut oil & lavender hand cream for deodorant for a few weeks now and so far so good (it soaks into the skin quicker than my kawakawa balm, so it doesn't end up on my clothes), whether it will work through summer remains to be seen.
Not looking quite so empty now then, that bag... When I got back I also added in the accumulated packets and other bits and bobs I'd very diligently hung on to as I travelled. Not quite diligently enough though, when I was at the usual cafe stop on the bus home I was putting the packet the teabag was in in their rubbish when it dawned on me that it wasn't just paper, but plastic lined. Damn. So that means there should be two of those in there - one for each trip. Also on the way down I thought the long journey was the perfect time to consume a chocolate bar given to me, which despite being Whittaker's was in a plastic wrapper, grrr. I'd very conscientiously refilled my flask with green tea in Auckland at Joanne & Oscar's before they took me to the airport so I wouldn't have to drink black tea on the plane or get a plastic glass of water, but totally forgot about PFJ when they offered me a bag of cassava crisps! I refused the lollies later with some contrition.
So what else is in there: several blister packs from tablets (still can't avoid that one unfortunately - the one medication I have come off was the only one that came in a recyclable tub!); the packet and backing off a sticking plaster; the snipped off bits from cutting open a couple of plastic bags; a wee tub I'd reused (I think it had been a takeaway sauce pottle J&O had acquired) to put baking soda in for washing my hair whilst away but it had cracked and isn't recyclable; a bag that had had dried figs in bought before I made my cloth bags for bulk foods from the healthfood shop, and a packet that had genmai tea in it I'd bought a couple of years ago.
Overall though not a bad collection given the bulk of it in terms of weight is stuff I've replaced with non-plastic and don't intend to buy again if I can avoid it. It has certainly been a lot easier this time around as I've done a lot of the thinking and have got into the habit of deliberately avoiding more plastic year round. I have cloth bags for weigh-out goods, I have beeswax wraps instead of clingfilm/gladwrap, I have a metal travel flask as well as metal water bottle, I have a much better idea of what products can be bought in non-plastic packaging and a bunch of recipes I've got into the habit of making that cut out bought plastic wrapped foods such as crackers and snack bars etc.
Over recent months I've got a lot better at making sure all food plastic bags get washed out and put in the recycling - I might not be buying stuff packed like that but I'm not the only one doing shopping around here!
I've also been replacing and/or getting rid of various other plastic items in my life that don't need to be there. Anything still usable by someone else has been passed on, there's no point throwing away stuff that is still useful even if it is plastic! I'd just rather have alternatives around at home, it makes me more conscious of the plastic I do still use when it stands out more. Having a big clearout and reorganization of my clothes a few weeks back meant I could take all my plastic hangers to the SPCA shop for them to use!
I can't imagine ever getting to the point of no plastic in my life, but I can certainly reduce it towards essentials only where there isn't a viable alternative (technology for a start!).One thing I realized recently though is that whilst I've got pretty good at avoiding plastic for myself I need to be a bit more on to it when it comes to things I buy or use for others - it finally dawned on me that when I'm making Phyllis' meals I don't have to use the individually wrapped cheese slices just because she would, I can slice or grate the big block! So she's getting through far fewer of those these days which is a step in the right direction.
Now to see how well the rest of the month goes...
Tuesday, June 30, 2015
wibbley wobbley timey wimey stuff
How did it get to the be the end of June already??? The obvious answer is one day at a time, but I'm sure weeks disappear when I'm not looking these days. I'm not sure if it is yet another fibromyalgia quirk or simply old age, but my sense of time has never been quite so abysmal as it is at the moment. Not only has my 'within five minutes maximum' sense of clock time gone completely out the window, but I'm forever being caught out by things suddenly being next week (or worse, last week!) when I was quite sure they were ages away still.
Okay so my lousy track record of getting birthday presents to arrive on time does not back me up in terms of evidence of once having had a good sense of where I am in the month. But that hasn't been though lack of awareness of the impending birthdays arrival, just my inability to get things in the post at the right time. Just to prove how fickle life can be though I successfully got two birthday presents to arrive bang on time this year that have historically arrived late on a regular basis - but that was due to luck more than anything else!
I regularly find that things I thought were a couple of days or so ago were actually over a week ago, especially things like how long it was since I last took my turn in Lexulous games or when an email came in. I suppose it hasn't been helped by having had a few weeks a bit shorter on energy where the amount I can do in a day shrinks somewhat.
Given the lack of energy I've spent quite a bit of time over the last few weeks working my way through the Dr Who back catalogue (2005 onwards) whilst handquilting. It has been interesting pondering on the complexities of living through the same events as someone else but in a different order (as per the Doctor and River Song). I've also been following conversations in a Facebook support group about CFS/ME/Fibromyalgia etc about various symptoms people have had - many of us have the same diagnosis but experience symptoms in many different orders and combinations. It isn't a linear condition, it goes round and round, and up and down with no apparent reason. On the plus side it means that you won't necessarily get any worse than you have been before, but then again just because things are improving doesn't mean symptoms won't come back, or that something else won't turn up instead.
There is also the issue of trying to remember that whilst today might be a good day, making the most of it and running round doing all the things you can squeeze in whilst you have some energy isn't that great an idea as it'll most likely come back to haunt you. Possibly tomorrow, or the next day, or next week even. It's like the condition itself doesn't really have a grasp of how time works in the real world out there, and it too forgets that actually that 3hrs gardening wasn't yesterday after all but three days ago...
Ah well, even if I don't know if I'm coming or going some days at least I know I'm not alone with that, and there's usually someone online who's been there done that already to reassure anyone they aren't losing the plot. And I've still got several seasons of Dr Who to watch :)
Okay so my lousy track record of getting birthday presents to arrive on time does not back me up in terms of evidence of once having had a good sense of where I am in the month. But that hasn't been though lack of awareness of the impending birthdays arrival, just my inability to get things in the post at the right time. Just to prove how fickle life can be though I successfully got two birthday presents to arrive bang on time this year that have historically arrived late on a regular basis - but that was due to luck more than anything else!
I regularly find that things I thought were a couple of days or so ago were actually over a week ago, especially things like how long it was since I last took my turn in Lexulous games or when an email came in. I suppose it hasn't been helped by having had a few weeks a bit shorter on energy where the amount I can do in a day shrinks somewhat.
Given the lack of energy I've spent quite a bit of time over the last few weeks working my way through the Dr Who back catalogue (2005 onwards) whilst handquilting. It has been interesting pondering on the complexities of living through the same events as someone else but in a different order (as per the Doctor and River Song). I've also been following conversations in a Facebook support group about CFS/ME/Fibromyalgia etc about various symptoms people have had - many of us have the same diagnosis but experience symptoms in many different orders and combinations. It isn't a linear condition, it goes round and round, and up and down with no apparent reason. On the plus side it means that you won't necessarily get any worse than you have been before, but then again just because things are improving doesn't mean symptoms won't come back, or that something else won't turn up instead.
There is also the issue of trying to remember that whilst today might be a good day, making the most of it and running round doing all the things you can squeeze in whilst you have some energy isn't that great an idea as it'll most likely come back to haunt you. Possibly tomorrow, or the next day, or next week even. It's like the condition itself doesn't really have a grasp of how time works in the real world out there, and it too forgets that actually that 3hrs gardening wasn't yesterday after all but three days ago...
Ah well, even if I don't know if I'm coming or going some days at least I know I'm not alone with that, and there's usually someone online who's been there done that already to reassure anyone they aren't losing the plot. And I've still got several seasons of Dr Who to watch :)
Tuesday, June 23, 2015
should vs must
Damn, blast and botheration... I had a post all written (that had been half written for some weeks!) and just needing to be proof read and now it seems to have disappeared. Well maybe it just wasn't meant to be.
Anyway, the bit I had just decided warranted a post of its own was about these links from Ella Luna, but rather than start writing something and risk losing that too (as it seems to be one of those days) I'll just share them now otherwise who knows how many more weeks/months will slip by!
So here is the article, and the talk she gave at Webstock on the same thing - following your calling.
I know she's right, I've been there done that. She's right, it is scary, not always easy, but definitely worth it.
Maybe more on this another time when the gremlins aren't making stuff disappear!
Anyway, the bit I had just decided warranted a post of its own was about these links from Ella Luna, but rather than start writing something and risk losing that too (as it seems to be one of those days) I'll just share them now otherwise who knows how many more weeks/months will slip by!
So here is the article, and the talk she gave at Webstock on the same thing - following your calling.
I know she's right, I've been there done that. She's right, it is scary, not always easy, but definitely worth it.
Maybe more on this another time when the gremlins aren't making stuff disappear!
Wednesday, June 17, 2015
preparing for July
I've printed off posters about Plastic Free July for the EcoCentre and I was delighted to learn that CBEC have got someone going round local schools promoting it. So good to know it is being promoted locally without me having to take that on myself! I'll be doing my bit to get the message across though that's for sure.
I've been looking back at my posts from July & August last year about my first attempt at signing up for the challenge. I went for the whole month option rather than just a day or week as generally my life doesn't have that much single use plastic in it compared to many folk, and I actually did two months in the end. It is interesting to realize just how much my habits have changed in the last year, especially considering I was thinking this year wouldn't be that much different from last. Through the year I've been replacing all sorts of plastic things in my life one step at a time.
The area of my life that I've made the biggest changes to is regarding personal care. I think by July/August last year I was already making my own toothpowder in lieu of toothpaste. It has worked just fine and my gums have been healthy too. I've got a wee pottle of it I keep in my travel washbag and it has the bonus of not being liquid/gel so one less thing that can leak and doesn't have to be declared in your hand luggage when flying overseas (not that I'm planning any such travel yet mind!). I've been washing my hair with baking soda since early December and it has worked better than any shampoo I've ever tried! I did try with baking soda before but for some reason my scalp wasn't that happy so I stopped and reverted to shampoo in case that was the cause. It wasn't, but it still took me a while to get around to trying baking soda again.
Earlier this year I discovered how easy it was to make cider vinegar and so now my home made hair rinse is totally free! Granted this is due to having apples and rosemary growing in the garden which not everybody has but great for me none the less. So, no plastic bottles for hair care, no plastic tubes for toothpaste, and I use a bamboo toothbrush. I use soap for washing and once I've used up the stocks in the cupboard of assorted provenance I can buy paper wrapped bars at the healthfood shop. The only thing remaining for me is deodorant and the crystal sort I use lasts over a couple of years so hardly a huge amount of plastic - mind you due to a psoriasis flare up I've only been using homemade kawakawa balm for the last week because of broken skin and bizarrely that seems to work too! But then again it might just be too cold for any sweat to form.. I was already using plastic free pantiliners (I'll spare you the details, but lets just say I need them most days) but decided to make some cloth ones out of old pyjama trousers and flannel sheeting which have that well washed softness new fabric doesn't come close to. Much better than spending money on something that gets thrown away as well as being environmentally friendly as they get thrown in with the wash that is getting done anyway!
I'll be keeping my eyes open for a another wooden hairbrush as I travel around - I used to have one that lasted years but had to replace it at a time when I couldn't find one locally and ended up with plastic again. The trick is remembering to look, which isn't easy when I don't actually need one yet...
I've made a couple of waxed cloths to use as food wrap instead of the likes of clingfilm/glad wrap or even lunch paper (which can at least go in the compost heap). Mostly they get used for packed lunches as we've already got a selection of those shower cap type covers for bowls and mugs etc that get used for leftovers and so on in the fridge. We do have a roll of clingfilm in the drawer but neither of us ever use it and it must be several years old!
I've gradually been replacing plastic scoops and storage tubs with metal and glass and have made some cloth bags to use at the health food shop for bulk bin goods. I've been very good at letting go of what I had and passing it along to individuals or op shops, given my mission to reduce how much 'stuff' there is in my life I'm determined not to get stuck in 'hoarder' mode, well not with plastics anyway!!!
I've been looking back at my posts from July & August last year about my first attempt at signing up for the challenge. I went for the whole month option rather than just a day or week as generally my life doesn't have that much single use plastic in it compared to many folk, and I actually did two months in the end. It is interesting to realize just how much my habits have changed in the last year, especially considering I was thinking this year wouldn't be that much different from last. Through the year I've been replacing all sorts of plastic things in my life one step at a time.
The area of my life that I've made the biggest changes to is regarding personal care. I think by July/August last year I was already making my own toothpowder in lieu of toothpaste. It has worked just fine and my gums have been healthy too. I've got a wee pottle of it I keep in my travel washbag and it has the bonus of not being liquid/gel so one less thing that can leak and doesn't have to be declared in your hand luggage when flying overseas (not that I'm planning any such travel yet mind!). I've been washing my hair with baking soda since early December and it has worked better than any shampoo I've ever tried! I did try with baking soda before but for some reason my scalp wasn't that happy so I stopped and reverted to shampoo in case that was the cause. It wasn't, but it still took me a while to get around to trying baking soda again.
Earlier this year I discovered how easy it was to make cider vinegar and so now my home made hair rinse is totally free! Granted this is due to having apples and rosemary growing in the garden which not everybody has but great for me none the less. So, no plastic bottles for hair care, no plastic tubes for toothpaste, and I use a bamboo toothbrush. I use soap for washing and once I've used up the stocks in the cupboard of assorted provenance I can buy paper wrapped bars at the healthfood shop. The only thing remaining for me is deodorant and the crystal sort I use lasts over a couple of years so hardly a huge amount of plastic - mind you due to a psoriasis flare up I've only been using homemade kawakawa balm for the last week because of broken skin and bizarrely that seems to work too! But then again it might just be too cold for any sweat to form.. I was already using plastic free pantiliners (I'll spare you the details, but lets just say I need them most days) but decided to make some cloth ones out of old pyjama trousers and flannel sheeting which have that well washed softness new fabric doesn't come close to. Much better than spending money on something that gets thrown away as well as being environmentally friendly as they get thrown in with the wash that is getting done anyway!
I'll be keeping my eyes open for a another wooden hairbrush as I travel around - I used to have one that lasted years but had to replace it at a time when I couldn't find one locally and ended up with plastic again. The trick is remembering to look, which isn't easy when I don't actually need one yet...
I've made a couple of waxed cloths to use as food wrap instead of the likes of clingfilm/glad wrap or even lunch paper (which can at least go in the compost heap). Mostly they get used for packed lunches as we've already got a selection of those shower cap type covers for bowls and mugs etc that get used for leftovers and so on in the fridge. We do have a roll of clingfilm in the drawer but neither of us ever use it and it must be several years old!
I've gradually been replacing plastic scoops and storage tubs with metal and glass and have made some cloth bags to use at the health food shop for bulk bin goods. I've been very good at letting go of what I had and passing it along to individuals or op shops, given my mission to reduce how much 'stuff' there is in my life I'm determined not to get stuck in 'hoarder' mode, well not with plastics anyway!!!
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