Happy campers!

Well it has again been quite a while since I wrote here. Meantime we have been away in the camper van, attending a fantastic weekend of ukulele festival at Cheltenham and then spending a week or so in the Lake District camping out at my Dad’s (well, me and hubby were camping out… sleeping in the van…. son was in house).  I will blog about the festival and holiday and what happened on our return separately in a while. For this post, the focus continues on the whole issue of downsizing/minimalism that I was last blogging about.

I have to say that I was far happier in the camper van than I am now back here at home. Not only because we were away on holiday… but because I didn’t feel weighed down by a house and its contents. In the camper van the space, and the modicum of possessions we could have in it, was manageable – I have come back to a messy cluttered dirty house and I hate it.

I have now been ill with M.E. since 1993 and the amount of housework I can do is practically non-existent these days. My husband works full time and looks after me and after our adult son with learning difficulties, and so his time for house cleaning and maintenance is severely limited, particularly if he wants any time to actually have a life as a person in his own right and not a carer.  My son will try to do household tasks but it takes an awful lot of prompting and direction, which can be exhausting for me. 

This house comprises two bedrooms in use, plus one that once was a study/hobby room but is now largely a junk repository, an upstairs bathroom, a living room, a kitchen, a hall, stairs and landing, a downstairs loo, a porch and a back porch. All the rooms are full of possessions, furniture and appliances needing to be cleaned, tidied and looked after and of course the rooms themselves need cleaning and the house maintaining and decorating. Then there’s the garden, which currently most closely resembles a jungle and needs a machete to negotiate.

Most of which we managed without quite nicely whilst away. It’s surprising how little we took this time.

The camper van is effectively a bedsit on wheels… one multi-purpose room to be cleaned, tidied and maintained instead of eight or nine living spaces with different purposes within a house.

The camper van can have its drawbacks… for someone with restricted mobility and painful joints and muscles the seating choices are really not wonderful, and for my husband not having a fixed bed is a pain since he is the one having to manhandle the rock and roll seating to bed conversion every night. No shower or bath, no freezer, no washing machine, no dishwasher, the barest modicum of electronic entertainments provided you have access to mains hookup.  And the cooking facilities are very minimal. And in the winter we might be cold as it is not a winterized vehicle (though with space blankets on the windows and a small portable heater it’s surprisingly quick to heat the space).

It is of course luxurious compared to a tent… which is what my son was living in during the festival weekend as the camper van only provides one double bed and really enough seating/living room for two. Had we been towing a caravan as well he would have been hunky dory. But he is looking at different future housing options than we are.

Drawbacks, as above, acknowledged, it is workable to live in one short term and I think actually workable longer term. It is perfectly viable to strip wash all over daily and wash your hair in a bowl in the sink, keeping all non-negotiable toiletries and your wash gear in a plastic lidded tub (as we have a portaloo, strike bathroom off list of necessities), the shops are open most days to buy fresh or canned food (strike freezer), there are cheap cafes (strike full oven and microwave), there are launderettes (strike washing machine and tumble dryer… by this point, strike whole kitchen), and if you keep re-using the same couple of bowls, cups and plates etc and washing up as you go there is no need for a dishwasher. There’s minimal storage and no shelving of course, but with a strict limit on clothing and bedding, and if you were happy to carry on in life without knickknacks, memorabilia, masses of books, dvds and cds and a mass of household paperwork, it’s workable.

So that brings me on to entertainment… well in these days, as long as you have electric hook up and can figure out an affordable and workable means of mobile access to the Internet (which we’d gone without, until we got to my Dad’s and were in reach of his wireless) there’s not much you actually need miss out on if your vehicle is your home.. the modicum of gadgets is enough. I already do most of my “tv watching” via iplayer on the lappie or my ipod. Music, films, books, games… all are available in forms that can be stored/read/played on these gadgets and can thus take up next to no space without limiting your choices. (Photos can of course also be kept electronically and can replace most physical mementoes). And of course there are still libraries should I want an old fashioned book with pages and colour pics, or I can pick a book up from a charity shop or boot fair, look at it/read it, and then re-donate it. I can find a knitting pattern or chords for a ukulele song on the Internet… I don’t need books for those. If I can fit a couple of ukes in a cupboard somewhere I’m sorted. There is a whole world of theatres, festivals, cinemas, pubs with karaoke etc out there for my entertainment. I will not be bored living in a moveable residence!

If I were a keen gardener I expect I would miss working in a garden, but as I am too poorly to garden, spending my life living in fields/campsites proffers enough prospect of greenery and wildlife to satisfy me. In fact more than I can have at home since I cannot maintain my garden to make it pleasant to sit out in, and on a run-down squashed council estate with some problems with neighbours I couldn’t enjoy it much anyhow.

Now consider the additional options we would have if just we as a couple were living in a caravan towed by a camper van… the camper van would provide transport for everyday life and a means to get where the caravan won’t if on a break, a little extra storage and a spare bed when needed, the caravan would add to the mobile bedsit concept the luxuries of a fixed bed with it’s own space, superior seating, and superior cooking arrangements, plus a small shower and proper toilet area, and possibly winterization.

And it would still be a more maintainable space than a house…. And we could move in the space of a couple of hours if we found we had nightmare “neighbours”. Only someone who has experienced problems like that can appreciate the freedom and peace of mind that one last fact alone would represent!

I really, really, REALLY can’t wait!

Get (de-)stuffed!

Hmm, can’t believe it’s been practically a fortnight since last I wrote here!

The past two weeks have had their blessings, notably (separate) visits from two dear friends I have been lucky enough to keep since childhood. This made for a couple of very pleasant, special and relaxed days. Karaoke has resumed, and Friday’s outing was also on my husband’s birthday which made it more special. Today hubby and I even managed to get a boot fair in at last… and the rain which had been forecast held off just long enough for us to make a little money towards our forthcoming break.

My mind has still been on “things” a lot… what to keep, what to be rid of, why I want to keep what I want to keep and whether I would do better to have a change of heart and mind on keeping much of even that. Our “boot fair pile” has grown substantially lately due to a household turf-out or two, and now we are slowly starting to go through the big stash of craft books, materials and equipment I gathered during the several years period when I was selling things I made at craft fairs and we are putting it up on eBay or adding it to the boot fair stock.

It seems a thing of the times… crafts being a big hobby market these days… for crafters to have anything from a sideboard full of materials to a walk in cupboard to a whole room (mine was the middle ground of small just about walk into-able cupboard, lol), referred to as their “stash”. There are now whole shops dedicated to craft materials, and the internet is of course full of craft sites, tutorials and online craft shopping all hours of the day and night. I got seduced into this like all the others you now see on eBay “de-stashing” due to harder economic climes. Craft fairs turned out to be a bit of a mug’s game – even if you were looking for a self-funding hobby rather than earning money for living. Why would people pay extra for your time and skill and the individuality of the things you make when they can either buy nice and cheap mass-produced things or things from foreign lands made by equally skilled but considerably cheaper workers instead?  Unless you live in a well-heeled area or a tourist honey-pot, you don’t get paid for your time as a crafter, and you are lucky to get your materials money back once stall fee, petrol etc have been taken back out of the pot. So I have finished my crafting journey now well equipped to make someone a bracelet or crochet them a scarf or make them a quirky felt glasses case for their birthday, but with the sad realization that crafting skills actually don’t come in handy that often and crafting is not a money-making venture in coastal east Kent for sure!

Which brings me to thinking what sort of a “stash” my ancestors who enjoyed crafts might have had – maybe a wicker basket with a little tin of buttons in, scraps of materials, bits and pieces saved from items no longer fit to use or wear and made into something new, or used to embellish something tired and make it seem new again. Maybe if they were lucky they knew a dressmaker or a tailor and could nab some scraps from them. But they certainly didn’t have a crafts superstore in their nearest big town and they probably would have regarded it as recklessly profligate to accrue stuff brand new just to sit on the shelf in case they wanted to use it.  

So why do crafters today think so differently? Why is the stuff on our shelves instead of in the shops, waiting until we actually need it for a project?  Why are lovingly garnered and squirrelled scraps of material now sniffed at in favour of “fat quarters” from folksily branded American companies?  Is it because our clothing and textile household items are now so cheap and throwaway that they’re not fit for much when they come to be discarded or is it that we’ve just forgotten how to save and re-use stuff, to re-cycle for arts and crafts?

There is a world full of humans spending their lives miserably mass-producing stuff to sell to other humans who are spending their lives miserably mass-producing stuff or selling stuff in order to afford the stuff other humans are producing or selling. Why the hell do we all need all this stuff? We are told if all this stops we will all starve because the world needs an economy and production blah-de-blah-de-blah… and in the meantime we consumers are “consuming” alive the world that we actually need to live on. Growing numbers of people seem to be turning their minds to how we could STOP all this and live in a happier way, wanting and needing and consuming and using a lot less.

On websites on minimalistic living or downsizing or de-cluttering I am reading how good people can feel when they are either forced to, or decide to, walk away from or get rid of much of what they own… the sense of freedom to instead move about more, unburdened with all this stuff to haul with you, look after, find enough room to store. Freedom to make different more daring decisions or moves in life than you might make when weighed down with commitments to maintaining a home, stuff and a lifestyle. Freedom to experience more and be more.

I only wish I could get on with the process a lot quicker. My husband’s shifts only allow us to boot fair every other weekend, and boot fairing is at the mercy of the weather, and eBaying is a frustratingly complicated process these days seemingly geared more to the business seller than the private individual de-cluttering. With money the way it is, we can’t walk away from the potential money tied up in all this stuff, as we actually now need it to just get by in our current situation.

I am looking forward to one day, in our new freer, lighter life in our caravan, sorting through my little wicker picnic basket full of scraps of re-cycled material and old buttons, and re-vamping an old top or two, or making a pretty patchwork glasses case for a friend for their birthday. Maybe I will feel some kind of connection with the women in previous generations of my family who did just the same. Maybe I will feel some kind of hope for generations of women to come who will perhaps find ways to live more happily and peacefully and relaxedly (is that a word?) with less.

One thing sticks in my mind from someone else’s blog, amongst the many I have explored recently… she said that who we are, our identity, and our memories, these aspects of self are not as tied up in the things we own (and use and wear and keep) as we think.  We always have ourselves, hopefully we always have our memories (and if not, scrapbooks and photos are pretty good reminders which can be digitally stored). Take a photo, let things go….

Desert island decisions

It's been a bit of a funny weekend. No karaoke on Friday evening as my friend couldn't make it due to illness and I wasn't feeling too brilliant either so decided to give it a miss. The visit to our foster daughter we had originally planned for Saturday was usurped by her "real" family (who claimed they spend more on her when they take her out so they should get precedence, besides they didn't want to shift to Sunday as they like their Sunday roast) and the boot fair we had planned on Sunday to try and raise money for a forthcoming break away from home in a few weeks time was rained off. Having spent all Saturday exhaustingly sorting through my stash of craft materials to find stuff to sell, this was exceedingly annoying, especially as there will be few such opportunities before we go away, given my husband's shift patterns.

On the good side of things a) we got our van back, although it cost £130 more than we had budgeted for in repairs and b) a very dear friend is on leave next week and decided to use one of her precious days off to visit me, so there is that to look forward to on Wednesday. And I am now re-learning how to list on eBay, after a gap of some years when my husband has done any listing that needed doing, so the craft stash can be sold off there, more gradually, although not, hopefully, so gradually that we can't get the van taxed before we need to go away, as that would kind of put the kibosh on things..

I am now very much looking forward to the aforementioned break. Thankfully whilst we hang on desperately to the camper van through selling the contents of our home to fund keeping it on the road, it gives us the means to stay somewhere almost as cheaply as being at home, and the target this time is attending a ukulele festival weekend, then moving on afterwards to spend some time with my father and his partner at their home in the Lake District. I had reached the grand old age of 48 without attending a music festival (aside from as a craft stall holder at our local Broadstairs Folk Week years ago now) and it was on my list of stuff to do before I die. Ok it's not Glastonbury... but it's equally exciting to me, especially as it is ukuleles! Yay!

Last but not least in this summary of our last few days, my husband and I had a conversation about the "quinking sicksand of life" situation I wrote about in my last blog entry. When we get back from our break, we have decided that the way forward may be to start discussion with social services about how they might help support our son if he was in his own privately rented flat out in the community (ideally I would like it to be sharing with another person with different learning difficulties, for safety). It might be possible to get this lined up at much shorter notice than a placement, which might make it possible to coordinate selling our home with arranging somewhere for him to move into directly afterwards. As for us, if needs be we could live out of our current camper van and whatever we might be able to get in the way of an elderly dilapidated two-person tiny caravan until the money side of things and a more permanent live-in vehicle solution was sorted.... and of course that would remain local for however many months or years it took until we were well satisfied that arrangements for our son were sufficient, permanent and working, and did not need our ongoing additional support to enable them.

Which has brought me to thinking about what one really NEEDS in life, as opposed to all the stuff we THINK we need. We are going to have to make do with a very small amount of room to live in, in the future... so everything we bring with us into that life has got to be either essential or one of a small group of very limited things there because they are wanted rather than needed. It's amazing what people accumulate in life, and we are prime examples of this... piles of books, cds, dvds, electronic equipment, stuff related to hobbies, stuff related to old past hobbies we have well moved on from but "might just take up again one day", photos, items of sentimental value and souvenirs, ornaments and knick-knacks, clothing for all occasions and weathers and accessories thereto, tools, equipment, furnishings, smaller modes of transport. Reducing this to what will fit into a camper van and small towing caravan will be an interesting exercise in clarity about what is really needed in life, aside from one another, the dog, a few clothes, bedding, pots pans and plates etc and a couple of ukuleles. It's a bit like the old question of what's the tiny shortlist of luxury items you would choose if suddenly faced with being stranded on a desert island  (the uke of course being a perfectly suited answer!)

The quinking sicksand of life...

I seem to have been absent from this blog for quite a time. It's not that I have been particularly busy and it's not that I've been particularly depressed - in fact mood wise most of the time I have been relatively fine for a mentalpausal woman. There have been some highs... some good nights out at karaoke... a rare evening at a concert by the super-talented Ukulele Orchestra of Great Britain which was  real buzz... but I have been feeling that on the whole life is a bit, well ... stuck... and there are things I am getting both angry and frustrated about (which is better than depressed, I suppose!).

We are in a serious Catch 22. Without going into all the gory financial details we need my adult son with complex learning difficulties to move out into a safe suitable supportive placement so my husband and I can sell our 25% leasehold share of our shared ownership scheme home and resolve some serious problems and move on in our lives via what will be quite a drastic change in lifestyle, but the problem is that if he does move out we cannot actually afford to live here whilst it sells and would likely find ourselves defaulting on the rent on the other 75%,  and thus invalidating our leasehold and losing the very asset we need to liquidate in order to be able to move on in life (we wouldn't quite qualify for housing benefits). Not to mention not being able to meet the basic bills without his contributions, nor to run the vehicle we need to get my husband to work (he works odd shifts not conducive to public transport) and to keep me from being virtually housebound (I am  crippled by M.E., and not always well enough for the somewhat bumpy, limited and extremely slow mode of transport that is the battery scooter).

Which brings me nicely to the major moan that is this blog today... I know that as a country we are just as debt-crippled as my husband and I are as individuals... but the climate towards the sick, the disabled and their carers just seems to be getting more and more hateful, suspicious and blaming... it feels like a witch hunt now.  I know public money needs to be saved but why are we targeting the most disadvantaged in order to do it? As I happen to be both sick and disabled AND a carer I feel doubly cursed. According to present public opinion anyone claiming sickness or disability benefit is a work-shy, cheating benefit scrounger and carers ought to be able to combine their caring with gainful employment.. as if caring wasn't enough of a job in itself. If you are claiming any public money you are certainly viewed as not being entitled to have any kind of living standard above abysmal sub-survival or you are obviously being given too much.

Well I for one am fed up! I can barely walk 70 yards without pain and often struggle to get dressed yet have been repeatedly turned down for D.L.A. for years, since I fought to get myself out of a wheelchair. I look after my son all day every day except for the couple of days a week he spends a few hours at a day centre and am "on call" every night,  and get just £50 odd of public money a week as a carer (less than an unemployed person)as my "replacement income", which it seems the world now begrudges me. Due to my caring responsibilities I hadn't worked enough to accrue any entitlement to contribution-related benefits when I got long term ill (probably at least partially as a direct result of being a carer, the stresses thereof, and the stresses of constantly fighting a system that didn't want to shell out for decent support or education for my son when he needed it, growing up).

We have been living for years on one wage in an area of the country where families with two wages coming in struggle, and our wage now is particularly low, yet still we hardly get any benefit help at all. Yes I go out once a week and I stand up and sing intermittently, but on the financial front I eke my way through a couple of drinks all evening, and on the standing to sing front I can only manage it via resting the rest of the week and some serious painkillers. It's my bit of life and my break from the caring... yet here I am, feeling I have to justify it!

Our van is constantly breaking down because we cannot afford to maintain it properly and still pay our creditors the agreed amounts (would we be in debt if unpaid carers were paid the national minimum wage per hour they were on duty or on call like their employed carer associates?... I don't think so!). We are happy to sell the contents of our home bit by bit to pay the maintenance and repair bills and keep it on the road, since our hoped for final solution to the issues involves not having a home to keep the contents in....but we kind of need the van working in the first place to get the stuff to the boot fair we want to sell it at to afford the repairs... yet another Catch 22.

So here I am knocking 50 in a couple of years, having spent all my adult life caring for someone else - despite  disabling illness myself since age 30, willing to bite the bullet and lose our home in order to settle financial problems and debts and move forward in life, but stymied even in that. I think it takes a particularly positive attitude to embrace a solution of losing your home, your accrued possessions, and living in a live-in-vehicle and view it as a potentially exciting and challenging phase to come in your life. But just as in every other phase in life, the "system" is not coming up with the goods... a way to help us move forward out of the Catch 22 and achieve this... support, advice, solutions. Present the "system" with any situation that doesn't fit into standard tick boxes and it flounders, scratches its head and disappears in a cloud of dust and excuses. It has never even been able to deal with a family - or a person - presenting with more than one problem or issue at once. Social services - and, when we had our mentally ill foster daughter also living with us, mental health services too -  have always spent more time arguing about what department is responsible for and paying for what (and then collectively not paying for anything, most of the time) than about seeing our problems holistically. That's when we've even HAD a social worker, from any department!  When we've had a good social worker (at present we have no-one specific assigned) they have always been struggling with a system that doesn't allow for what they would like to do for us.

At present our son is lucky enough to get a couple of days at a centre a week and some travel training for a couple of hours but we live in constant fear of losing these services, having spent years in the past without such things and particularly in the light of the current climate. As I get older and in my ever more failing state of health I am starting to feel that the challenge of caring isn't something I can carry on with until old age... even with respite breaks (which I currently don't get anyhow).. and that as my son nears 30, and I 50, he and I are both entitled to lives and futures of our own now, and he is entitled to carers with energy to spare and new ideas to help him progress, as well as me as just Mum, there in his life but not there in his face or his space. We love each other dearly but we get ratty with one another - this week has been particularly problematic in that respect - we are two people with challenging difficulties trying to cope despite the problems that arise from their interaction. Thankfully I have a very caring husband to help, but he has to go out to work...

I am willing to be gung-ho in life... fortune favours the brave, seize the day, boldness has genius, power and magic in it... and all that jazz.. but what does one do when  all set to boldly go, but trapped in a quicksand from which one cannot find, nor perceive, any means of release or helping hand? I am not fiddling whilst Rome burns, I am playing ukulele whilst trying to ignore that steady sinking feeling....

To baldly go where no woman has gone before?

Well, another week has gone by.. nothing much to report for it. No little messages from the Universe. A week of treading water. Had my hair done again, gone a little more auburn, kept it very short still. The hairdresser said it seemed to have thickened a bit after its shearing and she was plotting about it getting a little longer then developing a side-fringy bit again to cover up “that bit you don’t like” meaning the baldish spot … not sure I want to go back to comb-overs, though. Nor am I sure about wigs. Part of me wants to defy that whole societal lunacy that says that women must be “beautiful”… just why is that, anyhow? So many of us strive for it, feel like we forever miss the mark, and end up thereby lacking in self-esteem because of physical “faults” against this mythical standard we cannot meet (makes it sound like a dog show), feeling afraid to get/look old too. Sometimes I am brave enough to go out and put my bald patch on parade, sometimes I cover with hats and scarves. Sometimes if I cover it up I feel that there is nothing wrong with trying to look “my best” and that it makes me feel good, sometimes I feel that by not going out “as I really am” I am letting the side down in failing to challenge the whole obsession with judging people by their looks. But then isn’t creativity with one’s own image a form of self-expression? I like scarves and hats anyhow.. I like a certain 70s boho vibe sometimes.  Could I perhaps cut myself a little more slack given that I am already contending with accepting myself as fat and infirm, and have more-or-less reached a point where I can say like me this way or lump it on those issues? Can someone who has up until recently been dying her hair all the vibrant colours of the rainbow and who plays ukulele and sings karaoke be accused of being that afraid of what others think of her anyhow?  This whole thing about image and self-image is very strange… animals like to groom themselves to keep healthy and clean and display their colours to attract a mate but we seem to have gone beyond that into a world of confusion. 

My life as a crumpled daffodil

In the latter half of last year I was quite pleased with myself for losing considerable poundage, and also re-working my eating habits much to the better. Thus, though I knew my self-care was still lacking in many respects and though the weight loss had stalled, I wasn’t expecting the letter that arrived on the doormat yesterday lunchtime - following last week’s eye examination - which informed me my diabetic retinopathy had gotten a LOT worse. I had been expecting there to have been little or even no change.

For a person who had just started the ominous 13^th day of the month with a dental checkup and been informed she needed work next week that would be painful and more than she could afford, I had been in quite a good mood prior to this.

I had woken up to a sunny morning and a brain that had obviously received a “little chat” from the Universe overnight since it was full of quotations and thoughts about approaching life with boldness and the meaning of bravery.  My mind was saying fie to the approaching doom and gloom of dentistry and was full of plans for getting on with my list of stuff to do before I die, and encouraging others to do the same!  I was straight on Facebook first thing posting up bits from this “epic-fanny” (epiphany!). Obviously I had misconceived what the “little chat” had been preparing me for..

After the 10 a.m. appointment, since my husband was due to work a late shift, I had lunch with him and listened to him jamming creatively on his ukulele, and was glad I had been forced into an early start and ready to enjoy the day the best I could, M.E. allowing.

Unfortunately the spirit-dampening letter arrived about five minutes before he was due to go in to work, so there I was, left alone with it, and a little black cloud sidled through the door as he left, took up place over my head and grew, mockingly,.

Like a child I wanted to yell “It’s not fair!”, and like a child I gave in to fright. This is it, I’m going to lose my sight sooner rather than later, I won’t be able to see the Scottish mountains when we eventually get to live there, I won’t be able to see to play my uke, I will be sightless as well as trapped and knackered by M.E.  There was a weeping and a wailing and a gnashing of the teeth (but not too hard, since some of them are dodgy…) All my other problems and stresses drew in on me.

I shared my news on Facebook and a friend kindly offered to phone to give me comfort, but I felt pretty sure if I tried to talk over the phone all I was going to be doing was sobbing, and that doesn’t make for a very coherent or two-sided conversation, so I said no thanks. Another friend texted, in the middle of a walk in the woods with her dog, telling me about the wonderful bluebells. I knew she too would have tried to lift my spirits had I told her what was going on, but again, I wasn’t up to phone calls. I felt like a cheery little daffodil that had poked its head up for spring and had been trampled on.

But as the afternoon wore on I found myself slowly uncrumpling my leaves and raising my head. This little anthemic tune arrived insistently in my mind – something I had not even liked when it had been in the charts and hadn’t heard for years – “I get knocked down, but I get up again, you’re never going to keep me down”. I found myself rather crossly singing it. Bloody Universe is sending me messages again… it could have fixed it so my eyes were ok instead but no… it sends me gormless little ditties about perseverance in the face of life’s trials! Grrr.

Then I started thinking of ways I could maybe  better look after myself and prevent further deterioration, and started breaking it down into small concrete steps to work on.  And I went and played uke for a while. And lo and behold, my Dad, who I had been nagging about getting on Facebook for like.. forever… actually arrived on it , which fact cheered me considerably! And seeing my posts from earlier,  he rang me, rather worried.

So I was faced, after all, with a phone call. And though I did share some of how I had felt, there was no sobbing, and this slightly mangled daff was sticking her head back up over the tall grass and exuding the best cheery yellow, even sometimes laughing, voice she could.

And I wondered… why do I do that? Why do I often laugh when I am so close to crying, make jokes about things that frighten me or make light of them, or take the mick out of how I am feeling? Many years ago a friend, who I eventually fell out with, complained that I never take anything seriously … “You laugh too much!” she said.

I have lost count of how many comedians I have discovered suffer from depression… some of them hysterically funny and very creative. I don’t claim to be among their number but I bet this woman would have thought they laughed too much too.

One of my friends had remarked the previous day that I was braver than her, to which my immediate comeback was “I fake it”. Another, this day, remarked on my persistence when faced with a problem, as did my husband. I have always felt like a wimp, covering up by being quirky.

There’s a fine line too between bravery and bravado, between persistence and stubbornness or even obsession or control-freakery.

Thankfully, while I can see some kind of a funny side, or even just laugh at my own silly self, I am practising the ability, the flexibility, to bounce back up and be annoyingly bright and yellow again, whichever side of the line my behaviour has fallen on.

So I guess the instructional thought that I was given in my sleep to wake up and face this grotty day with (and impertinently put up on Facebook) was quite apt: “Bravery happens when you start to laugh at yourself, but lovingly.”

I didn’t write it myself, the Universe told me… I have a hot line… and if you don’t believe me… ner ner ner ner ner! So there!

Spring has sprung after winter's darkness...

Hmm, a whole week ago since I last wrote here. So what did the last seven days bring to my life? Well I had a Facebook conversation that led me to realise I had missed something off my list of things to do before I die... I want to go on retreat.. or something like that!

When my son, who has learning difficulties, was little and when I was also working at a school for children with learning difficulties, I saw a documentary on the Camphill communities.. some very special places where people come to share their lives for a while  in community with people with learning difficulties, with an emphasis on a calm and spiritual atmosphere and a kind of other-worldly, outside of the rat race, way of being. It made a big impression on me. But at that point in my life it would just not have been possible or practicable to follow my heart and spend some time in one.

Growing up in the Seventies, when everyone else was moving on from hippy thinking, I was still at heart a flower power child, running a decade behind. I liked the Beatles and the Stones when everyone else was enthusing about glam rock, then the Bay City Rollers, then disco, then punk. When it was fashionable to spit on people, I still wanted to give them flowers. The inner hippy never quite left me. I would have sworn that yes, actually, all you did need was love.

I hung onto my rose tinted glasses for dear life for a long time, through battles with an educational system so reluctant to actually provide appropriate education to my child it employed all sorts of evasions and dirty tricks to get out of it until it was too late for him, through encounters with the helping professions who turned out to be mostly anything but helpful and on some occasions very dangerous, right up until the point when they were finally ripped off my face when my "foster daughter" was treated with utter cold lack of compassion by the social services who had failed her when she herself was little and now employed every dirty trick to take her own children from her as a vulnerable adult.

Cynicism and anger ruled for a while. The world was inherently a cruel place where every living being survived at a cost to another living being, even the best intentioned of people were weak and selfish and the worst intentioned were evil. I was very depressed and I lacked faith in everything and everyone.

It's taken a while to re-find a sense of faith. I have long periods when I do not want to watch/read the news because sometimes it fair breaks my heart to do so, particularly if I read a spate of reports about cruelty to animals, or if I read something about forced adoption or about the rights of people with learning difficulties being trampled over. I am still only one fragile step beyond that sense of despair.. but like a spring coming after a winter, the recovery of faith is starting.

It's not a case any more of seeing the world in a rosy light, nor in a dark one, it's trying to see it in a spirit of acceptance... that it is what it is. We are cursed with the mental ability to judge stuff all the time, to analyse it as good or bad, right or wrong, to worry about it and fear it in advance, in a way that our animal companions are not. Sure they are not too happy about starving or being killed and eaten as and when it happens to them, but they don't get all depressed or anxious about the prospect or decide the universe is an awful place and carnivores are inherently evil. They feel their emotions and sensations at the time and act and react but on a sunny day when the grass is plentiful there are no awful doom and gloom judgements of the world running through their minds. Only that "flow" and that "balance" that they are still instinctively connected with/part of.

I would like to find a place to visit from time to time where I could step back from our incredibly complex world into something more simple and connected with whatever it is I am trying to talk about here. It might heal a few wounds. I have connections I don't want to lose, I am not young, free and single, so I can't disappear into some kind of hippy new-age commune for a year or two...but if we could find a place to live for a while that was near some such project, or near one of my Camphill communities, maybe in some way I could be a part-time participator or contributor. Or even just sometimes go for a retreat...

Moments to remember!

Going back to my post here about moments that make memories, and making the most of time with people, I am so glad I went to the pub to sing karaoke last night, despite actually feeling pretty awful!

When I first had M.E., back in 1993, one of the major problems contributing to my need to spend much of my time quietly in bed was a kind of painful over-sensitivity to everything. It's hard to explain if you haven't experienced it. It doesn't only crop up in M.E., many people with autism or neurological problems spend their whole life like it. Normal light is way too bright and hurts you eyes as if you were out in brilliant sunshine and needed sunglasses. Normal sound is either too loud, and jars your nerves, or too cacophonous, you can't properly separate what you need to hear from the background noise.. it's all coming in at once and full-on. Music sounds out of tune when it isn't. When you move it doesn't quite register right.. you feel off-balance, out of kilter. Food doesn't quite taste right and you wonder if it is off. Touch hurts you, even the clothes on your skin.

Thankfully, it mostly wore off over the years.. as if my brain had learned to adjust to these processing problems and compensate, but there would still be the odd day when light was just too bright or the world felt a bit "too much", particularly if I was poorly with something else on top of the M.E. However, just recently I have experienced two separate days where these problems got pretty full on again, and yesterday was one of them.

Add to that a worrying phone call from my foster daughter and some glitches in getting ready to go out and it would have been easy to back out on grounds of not being able to cope.. and indeed in the first few minutes after my friend V arrived with the two young ladies accompanying us out for the evening, I actually felt a sense of panic, just coping with the normal chatter and laughter and bustle of getting ready to leave for the pub. It was as if my mind and nervous system couldn't quite keep up with processing what people were saying to me or what was going on. The drive provided space, as it was just me and D in the van, whilst the two girls kazooed their way there in V's car.

I can't say it was the easiest of evenings for me. I was constantly worried I seemed like I was ignoring people and sometimes I had to sit with my eyes closed to reduce the input. But for all the world I would not have missed my two young friends singing with ever growing confidence... and particularly when they ran up to join David as he sang Shania Twain's "Man! I feel like a Woman!" and were giggling like mad at him! (another strike for eradication of gender specificity in karaoke...LOL)  If you don't get out there and live, whatever is going on with your body or mind, you miss this stuff, and it is gone forever.

Funnily enough, when I got up to sing myself, I found myself able to disappear into a little world of my own with the karaoke track and block the rest out, in a way I normally CAN'T, and felt I sang the better for it... go figure! It was like a blessed pause where I was able to concentrate again, only more clearly than ever, and there was just me and the song.

Wouldn't have missed that either..

Oo-er, thinking again...

Hmm, after some years of carefully very loosely defining myself as a Vague Pagan, I think I managed, in an exchange of ideas today, to actually define what I believe, for once.. I must stop thinking.. seriously bad habit..


I hasten to add that as I don't believe in a single objective truth either, I am not going to argue the toss with anyone who believes differently or say I'm "right" and they are "wrong", because, for me, that's not what faith is.

I said  "am only a Vague Pagan, can't explain what I believe easily, quite close to Taoism but not quite that either.. more that the universe itself is, as a whole, an alive thinking entity with a "flow" of its own and a "balance" it keeps. I believe what people perceive as God is a personification of this, and that "Mother Nature" is another personification"

Ninja hormones and thinking too much!

Funny how menopausal hormones can sneak up on you and do a ninja attack, like Cato jumping out of the fridge to get Inspector Clouseau! I'd had a cool Friday night.. karaoke with D and V. The pub was buzzing and it was a good evening with lots of singers pulling all the stops out for fun, with some great silliness. This morning however we overslept, meaning a rushed start, and that always puts me out for the day. Enjoyed a brief visit to V's, helping her dispose of an old sofa, and got bounded all over by her lovely hound, who I was pleased to get a chance to see again. But on the way home, with my blood sugar possibly a bit out of kilter, I began "thinking too much".

Now "thinking too much" is always a bad thing... think as little as possible, that's my motto! It was a kind of philosophical, life, the universe and everything "think" about making the most of people whilst you have them, possibly partly triggered by V receiving an old police report about her sister's death in her teens, which had of course brought it all back to her vividly. Counting her, two of my closest friends lost people from their immediate family in their teens. I lost my Grandpa quite suddenly in my teens. Of course I have suffered the loss of relatives since, and I have grieved them, but they did not go in an unexpected or sudden or traumatic kind of way.

In  2007 I "lost" a child who had become like a grand-child to me, not to death but to forced adoption. Due to the machinations of Social Services I didn't get nearly as much time with him as I would have liked when he was still with us, and some of those times were snatched or stressed.  The end of it all was very traumatic. His mother, again, as a daughter to me, has spent much of the last couple of years in psychiatric hospital as a result of his removal from her and is only just now beginning to claw her way back from the trauma of that experience (touch wood). Circumstances mean she will not live with us again. Sometimes you lose people to death, sometimes extremely unexpectedly, sometimes when you know it is coming.. sometimes you lose people because they, or you, move on in life, and circumstances change. At least in the latter case you might find you become close to them again one day, through chance, or because you make an effort to re-find them. Sometimes that doesn't work because one or both of you has moved on too much. People move in and out of each others' lives.. young people growing up need to break away from their elders a bit to make their own lives, and you may not see as much of them as you'd like in that phase. There are people I am missing, at the moment, due to a number of the above reasons.  There are people I know I will miss badly when my own life moves on next.

So my general conclusion was that one needs to really make the most of the time one spends with people, because these moments are when you forge the memories that will keep them always with you, if you should lose them in any way. And with that still in mind, as I sat on the chairs by the checkouts in the supermarket whilst D paid for some stuff we picked up on the way home, I found myself suddenly fighting floods of tears because some bloke who looked vaguely like my Dad who now lives hundreds of miles away in the Lake District (so no popping round) and is "getting on a bit" walked past me. I didn't half feel silly! But I am visiting him this summer... and I will be sure to make the very most of it.

The pink dreadlock sheep of Herne Bay

Desired effect of pink dreadlock wig:

Actual effect of pink dreadlock wig:

Lesson learned: never buy a wig through the post that you are therefore not able to first try on! Especially one that offers no returns once tried..  thankfully it wasn't hugely expensive. Methinks there will be some creative cannibalisation over the next few weeks...

Baby steps..

My poor elderly brain is decidedly tired after a day of sorting out a problem with my new baritone uke at the music shop, then two lots of uke practice during the day in two different sets of chord names-to-shapes, since the baritone is differently tuned. This presents a number of problems... but I like a challenge, and "we shall overcome"!

Which brings me neatly to overcoming the challenges of fulfilling my list of stuff to do before I die. I need to start by picking an aim that doesn't require a lot of money and that is the most achievable... therefore I have picked writing a song for ukulele as my first challenge off the list. And since I used to write poetry in my mis-spent youth, the lyric will be the place to start. Watch this space..

How many ukuleles can you fit into a camper van and caravan?

I am growing old dis-grace-fully, but less dis-grace-fully than I might...

I had already acquired either as early or on-time birthday pressies my electro acoustic concert size uke, a tiny mini practise amp (clips on a belt, fits in a handbag), a wee pickup for the soprano, bag and pub prop for the soprano, an electric kazoo, and a stylophone (a la Rolf Harris, remember them?), and there are still a coconut hand drum and some £3 secondhand electronic drumsticks coming in the post. To my enormous surprise, thanks to the generosity of the souls around me, I still had some birthday money left over to spend!

So we wandered into a music shop in Canterbury today.  It was full of little fluffy clouds and blonde haired men and women in white garb sitting on them playing harps. Or at least it seemed very much like Heaven to me! The percussion corner caught my eye first of all and the variety of fancy bits and pieces there was fascinating enough, but I decided I should abstain. So we wandered round to the books, but the huge variety of instruments surrounding me kept calling to me. Mandolins, yummy, balalaikas, yummier, a whole corner of other strange and exotic stringed and woodwind instruments.

Then there it was... the  banjolele. Which is a kind of cross between a banjo and a ukulele. I have often admired their shiny glory on eBay but had not met one in person. Here there were several, and stunningly beautiful they looked to me too. After I finished swooning I picked up the entry level one to have a play with. They use the same tuning/chords as the uke so I could play it straight away. Jingle-jangle love at first play! Now the uke will always be my first love now, with the kazoo coming a quirky second, but the banjolele is very very sexy,and quirky, too! Unfortunately starter banjoleles are in a VERY different financial league than starter ukes and so I did not have enough. For a short while there popped up, amidst this Heavenly environment, a serpent in the form of the thought of raiding our fledgling van repair fund then spending the next month listing my craft materials stash on eBay dawn til dusk to repay it. I was strong, reader... I could not be THAT dis-grace-ful.

However they did have a cheap baritone uke that was within what I had... so I put away the Bob Dylan songbook I'd picked out that would have put me over budget if I had got that as well .. and walked out within budget. But with another ukulele... how many ukuleles can you fit into a camper van and caravan?

My excuse for this one is that it is tuned entirely differently. Basically it is tuned the same as the top four strings of a guitar. Being bigger than the soprano and concert ukes I have, but not so big as to make it too difficult for me to play as the guitar had been, it has a more bassy sound. Aside from the fact that I will be confusing myself immensely by learning two different sets of chord shapes at once now, this has some advantages. I can use it sometimes when playing in our uke group, or with David, to compliment the higher-toned instruments and pick out bass lines to allow for different arrangements.

Had I not bought this, whilst I had the money to hand in a lump, the cash would only have gone on little bits and pieces..

I know... I'm dis-grace-ful... we will need an instrument trailer...

Celebrating popping out from my mother 48 years ago!

Birthdays are quite a funny concept really... celebrating the anniversary of popping out from your mother's womb and taking your first breaths in life. But they are a day when, if you are lucky, the people around you strive to give you not just presents or dosh but a feeling of being loved and thought of. I felt very lucky on mine.

Life is a series of moments, many mundane, some extraordinary, some awful. We fritter a lot of them away in a state of distraction, thus unable to feel really alive. I had a very "alive" day this March 18th, lots of fun moments, lots of quietly good moments. I might not have been feeling that well, I might have been in pain at times, but I had a sense of well-being, of enjoying all the moments, of being taken good care of by those around me helping me celebrate my birthday. So thanks to everyone who did something towards that day, whether it was a message on Facebook, or a card or a pressie or a phone call, or spending time with me and making sure I had a good laugh, singing with me, playing kazoo with me (or for me). I had a cool birthday... bless you!

The new me!

Ok, here's the pics of the new look me for those who won't do Fbook. The shortness of the cut disguises the thinning and the strategic scarf hides the baldest areas, though I actually walked round a few shops without any scarf just after it was done, and didn't care, it was quite liberating.. it's sufficiently funky I felt I was getting away with it. The last pic will be my alter ego once the wig arrives from the States...

Hmmmmmmm

Ok, sad cow that I am, I have been awake half the night thinking about my hair! I have looked at my photos and thought about the opinions offered, and in the end what it came down to was.. what would I feel was "me"?  I tried to imagine myself turning up at karaoke or uke club or out and about in the camper van in those hairstyles. What would reflect who I am, rather than what I thought people might find most attractive. Well I have made my decision... all I have to do now is persuade my hairdresser that it's really what I want and to carry it out, lol.

How low should I go?

1.

2.

3.

4.

5.

6.

Bearing in mind all the women are stunning and I'm not, and the kid is cute, and I'm not, how short a haircut should I go for tomorrow? Imagine my face with the cut, and stick the number on facebook, lol. I need help here!

The list... here it is!

What I want to accomplish or experience before I die…

1)      I want to do the whole musical festival experience a few times, muddy fields, loud music, tents, juggling, people in crazy clothes etc etc. And I want psychedelic wellies and a green hoody with multicoloured daisies on to wear there…

2)      I want to live in Scotland for at least a time, somewhere near a loch and mountains, and I shall be living in a live-in vehicle when I do it.

3)      I want to own and wear, together, in public, a pink tutu and pink and yellow stripy thigh high socks or leggings, plus a giant pair of fairy wings.

4)      I want to spend a week somewhere where I can spend a lot of time grooming and communing with a donkey/donkeys.

5)      I want to write my own songs to play on the ukulele.

6)      I want to form a kazoo group.

7)      I want to take a camping holiday with all my best friends all at once.

8)      I want to have a second stab at running a craft stall/business.

9)      I want to go all the way round the British coast in a small boat.

10)  I want to own a camper van painted with giant flowers.

Hair today, gone tomorrow..

Hmm, as I have just commented on Facebook, I am beginning to understand why people say "my hair is fried" when they have subjected it to too much bleaching and colouring. It is having definite haystack tendencies. I guess colouring my hair crazy colours was one of those things that would have come up the top had I been writing a list of "stuff to do before I die" a year or so ago. It has now been orange, pink and turquoise, and red and I had planned to journey back to pink (all over this time, and baby pink) and then a deep blue yet, but I am not sure now that this is a good idea.

To come out of the closet, I am going bald. Not so much that it's obvious yet, but very thin around the crown and if I parted it centrally the parting would be quite wide. My hair has been thinning steadily for the past few years. I used to have luscious thick ash-blonde hair in my youth. I miss it, painfully, as it was the only thing about my appearance that pleased me. Colouring it was not so much on the list of "to do before I die" as "to do whilst I still have any hair to do it to".  Why is it that men can walk around quite happily bald without being judged that much, if at all, whereas for a woman it is disastrous? So much of our self-esteem and sexiness is bound up with having a full head of beautiful hair.  So those of us girls for whom it is thinning, those of us who have alopecia or are getting chemo, it is something that can make us quite miserable. Sure, a bit of surfing can lead you to loads of sites about clever ways to hide your hair loss. Hats, scarves, bandanas, turbans, extensions (if you have enough left to attach them to), clip in attachments (makes it sound like one is a hoover!) and finally wigs.... but how come you don't see men feeling forced to cover up their baldness with a cute floral turban?   So, in case any other women of my age (will be 48 on Friday 18th March 2011) who might read this are experiencing the same problem... this is just to say, you are not alone! If more women talk about it, maybe those going through it won't feel so isolated or scared of being judged.

So perhaps now is the time to get it cut a bit shorter for a while to lose some of the most damaged hair, and to  go for colours that don't require bleaching i.e. something darker than what had become my natural mid mousy brown. The shorter I go the easier it would also make trying out wearing wigs (which could be baby pink or deep blue!). So what do you reckon folks? I need some girly advice...

What to do before I die - part 2

I can think of a long list of things I DON'T want to do before I die (some of them are things I don't want to do JUST before I die, like, bungee jump, or skydive, for example). I DON'T want to lose my marbles, I DON'T want to carry on being so careless about my diabetes that I am liable to go blind and have my feet drop off, I DON'T want to live in Kent where the mountains are crap for another twenty years, and I DON'T want to learn to love mashed potato or soup.. amongst other things. Is this a start, I wonder? Most people finding themselves a little bemused in their middle years decide they should find themselves before they die... I am not sure I have ever been hiding from myself in the first place (5, 4, 3, 2, 1... ready or not, here I come!) I am a pretty uncomplicated being (think of the kind of things in life that please a toddler and you've got most of what I like!). I have never felt a "calling" though, to a particular defined course in life,  I have always been a meanderer and a dabbler... is this bad? Should I be searching behind the sofa and in the wardrobe for myself?

Vote in my poll..

Vote in my poll; keep scrolling down to see it, no, down a bit more, down a bit more, bit more, bit more,  right to the bottom, yes!

P.S. Why does one's latest blog post appear at the top, and the first at the bottom.. this will be very confusing for readers new to the whole concept and trying to find the first thing "wot I sed"..

What to do before I die?

Hmm, well we were riding along in the van to see S in London today when I got talking on the subject of some rave-type event that D's niece at uni was attending, and I started to bemoan the fact that I was growing old (dis-grace-fully) without having done the whole club/rave/music festival type scene in my youth. I said if ever I was dying, it would have to go on my list of stuff to do in my last six months or whatever. Then I started to think about the fact that really, you never know when a bus might hit you (cliché-much.. why a bus? could be a train, or a monster truck, or a VW camper van, or a hovercraft, or a herd of ghostly cattle) and that really (again), I should be making this list of stuff I want to do before I die, and getting on with it as soon as possible. Because you never know when Death will come riding up on Binky and nab you with his scythe. Watch this space for THE LIST...

First words

What historic first words should one choose when starting a blog....

piffle, conkers, supercalifragilisticexpialidocious, snout, wombat.... well that was random! Bit like my life, really...