Thursday, 23 December 2010

New hair day...

So it's two days on from the last blog post, and the blown fuse has been replaced. I have a lot of friends who talk a lot of sense. Sometimes they're repeating the stuff that my own logical head is telling me, but repetition reinforces the lesson, and I'm always far more willing to listen to other people than myself. Sometimes they blow me away with new things that seem so obvious, why didn't I think of them... But always they make me feel very lucky to know them.

So what's changed? The fact that after years of doing this alone I've finally opened up about it? That's certainly helped. Also I've just learned that doing something enjoyable once or twice a week makes a huge difference. I don't just mean the "typical me" scenario that goes something like:

Me: Hey, I'm ironing!
Me: Yeah, and?
Me: Well, (a) that means I can stand up and (b) I can move my arms and (c) support the weight of the iron and...
Me: Yeah yeah yeah big deal, is that it?
Me: No, I'm actually enjoying that I WANT to be doing this and that I KNOW I'm making a difference.
Me: *in a very small voice* Oh. Yeah, I see what you mean...

I mean the real enjoyment of breathing in a lungful of cold air, seeing other people's faces, hearing music from a Salvation Army band playing as the snow falls, I mean enjoying the naughty feeling of doing something trivial while the house mess is left to stew, that isn't trivial because it means I'm alive. For so long I've been in a kind of fudgy beige world where I can see stuff that needs doing all around me, but literally without knowing where to start. Where I've waited to turn an emotional and mental corner as I have done in the past, popping out of depressive episodes like a cork, full of energy and direction and motivation... this time has been the worst of all, and this time that simply didn't happen. But I'm learning, padding myself mentally, day by day hour by hour, doing stuff by rote and by pretending when I can't quite get the buttons done up on my padded mental waistcoat.

There is a popular idea about the choice to make today a better day than two days ago, that all that is needed is to step out of one day, shed it like an old skin and leave it like a pile of dirty washing on the floor that will simply evaporate if ignored. I resist that idea, because it *seems* to imply that I chose to have such a crap day that day. I know that's not the intention, but some words of "positive power" can be damaging, especially when you go back to Lesson 2 where you learn that depression twists thinking. Yes I do have a choice - I can choose to pretend today to have motivation and energy, to break down the first enormous job into doable-sized chunks, and to start. I can choose to allow the pretence to carry me through, hopefully long enough to do the job in hand in its entirety, and to move on to the next one (allowing for pacing and physical condition of course). But to do that I have to have pretence as a tool in my armoury and not everyone has it. I also have to have support, friendship and love from other people, and hope, perserverance, determination, strength... I have some of the qualities I need, and I am so lucky to have them. They will have to do the work of all the other qualities I lack - organisation, hope, perserverance... you get the idea. We're not just a walking box of tools, we're complex and complicated.

So today starts with getting downstairs. A challenge I didn't have yesterday, and one that's going to make the chores interesting! It's funny how living so long with physical pain makes it so easy to ignore, deal with, work around; emotional and mental pain feels so fresh and new with every stab. Time to try and find that padding.

Tuesday, 21 December 2010

Crumbling resolve

Well it's the shortest, darkest day, and I haven't had my hour in front of the SAD lamp. Too much to do, no energy or resolve to do it. Definitely a wobble day.

I'm desperately holding onto the fact that I've managed to wrap a few pressies today. Coz that's all I've done, all day. Where did the day go? I don't know, I honestly can't remember. I'm tired - well exhausted - hurting, cotton-wool-headed and feeling really really sick about something I can't even put my finger on. I'm in one of what my therapist might call my black-and-white, all-or-nothing moods. I'm behind with my coursework and it feels like I'll never catch up again - and it's only a short course. I'm struggling to do anything, including my hobbies. I just want to sleep and cry, cry and sleep. This isn't a bad day, it's an end-of-the-world day.

It isn't that we have no food in the house, much less Christmas stuff. It isn't that the pressies are only half wrapped, and I've missed seeing my sister yet again because of the weather; it isn't that Young Master is bored out of his mind and only wants to play computer games rather than do stuff with me; it isn't that we're looking at the most disorganised, untidy and unprepared Christmas in 25 years. It's that all this I've known would happen, all this I've been fighting, all this I've refused to let bother me because there is a reason for the mess, the untidyness; but today it's getting to me. Today I am worn out. Today I've put on so much of the weight that I've been fighting to lose for so long; today I didn't get any exercise; today I want to tell myself so badly that I've let myself down and those I love. I haven't really, but like a junky going cold turkey (and yes I know what that feels like) I almost crave the comfort of being able to beat myself up, blame myself for so much stuff that is beyond my control.

A wonderful friend just asked me if it all really mattes. No of course it doesn't; but I kind of want it to matter, because that's old and familiar. Right now I don't have the strength to be strong; I've let go the reins so far they're almost out of my reach. And I so badly want to pick them back up again.

Thursday, 9 December 2010


I'm not sure I'm supposed to my therapist laugh quite that much. Not sure how I did it really, but it was actually a joyful meeting, and my shortest one so far. I think he got more words in edgeways today than I've let him in previous encounters too. All in all I feel all glowy and happy that I can face Christmas caring about what really matters and not getting sucked in by anything that doesn't. One more session to go in the New Year, and then I really will be flying solo. But he's equipped me with some tools for the job, and I feel prepared. It's been a long 6 months or so, and although the steps are still baby steps, they're getting more and more confident.

The other day I woke up feeling grey. I mean truly grey, not black-hole-grey, not sun-almost-shining-grey, just grey. Critical-bully-me was just waiting on tiptoes, ready to pounce; I wobbled in time to thoughts of "it's all going to start again" and "I can't face it I'm off back to bed". And then from nowhere came Self-esteem-me saying "ok so you're having a bad day. So have a bad day. Tomorrow will be a new day and will bring what it brings. If you need to give in today, well then that's ok". A couple of hours later I found myself singing as I ironed. Bitch-me was silenced. "We'll see..." she muttered under her breath, "you haven't dropped the ball yet, but when you do I'll be waiting..."

Well today she's still there, eyebrows raised, foot tapping away in anticipation. But it's a worried anticipation. Today the mutter is almost inaudible, and the emphasis is very different "You haven't dropped the ball yet..."

And I just smiled.

Saturday, 4 December 2010

Thanks, T P!

This just about sums up what I feel about depression, and how I picture it as it affects me.

"Your power is only rumour and lies... You bore your way into people when they are uncertain and weak and worried and frightened, and they think their enemy is other people when their enemy is, and always will be, you - the master of lies. Outside, you are fearsome; inside, you are nothing but weakness."

From I Shall Wear Midnight by Terry Pratchett

This ties in with twisted thinking. You know, those little twinges of uncertainty that strike when friends stop laughing as they are approached, or when the gleam in a stranger's eye seems to linger just a fraction too long on an aspect of appearance that until that moment felt comfortable. Neurosis, paranoia, self-consciousness, shyness, self-hate; depression feeds these and is in turn gorged on by them. Trust, in myself and in others, is the first and biggest victim, but because my world-view is out of kilter, is quickly re-engendered just to be shot down again every bit as quickly, because the new generation of trust was birthed on sand in a sideways world.

Taking a step back to focus on the truth takes confidence. And I have to pretend to feel confident in order even to want to take that step. But doing so makes the picture slowly right itself, back into a concrete and upright world, where I can stand with both feet on the ground and trust solidly in those whose friendship and love has never waivered, and who are still there calling me, waiting for me, listening to me and caring. Do I owe them a debt of gratitude? That's a tough question, the guilt in me would say yes every time, the unworthiness would rise up and shout yes from the rooftops, the self-hating me would demand that I consider myself unequal and unworthy.

But I say no, I owe them nothing; but I love them and care about them as much as they do me, will stand by them in their hour of need, and will be content with that not because of a debt or sense of duty, but because I consider them as worthwhile as they do me.

Saturday, 27 November 2010

The Journey

I've just been extremely moved by a friend's blog - one of those that seems to reach in and drag out some of my deepest feelings. I'm quite emotional, and realise that I haven't yet blogged about the stuff that's been happening to me recently.

I'm getting more exercise, am on a diet, losing weight; I'm told that I'm much calmer and funnier, and I'm looking forward to and getting excited about stuff for the first time in a very very long time. And the reason this is so important to me, and the thing I am most proud of dealing with, is that I suffer from depression.

I have done so since a child, although wasn't diagnosed until my mid-30s, and even then I could push it to the back of my mind and my life and ignore it. Post natal depression - which should never be patronisingly reduced to "baby blues" - got me, but with the help of temporary hormone supplements, I beat it. Then as Young Master progressed in years, I started to have physical problems, and I coped; with help, with support, and with some very good friends, and the unstinting love of my Big Chief White Hair and Young Master, and my beautiful wider family, I adapted - we all adapted.

Then I ended up back in hospital with yet another auto-immune problem. This time the decline was slow - the physical problems took precedence, learning to walk with aids, gradually getting together the stuff that made life do-able again, didn't really give me much time to think. But eventually there was nothing between me and an overwhelming agglomeration of guilt, frustration and self-loathing.

It's always been there, but like a tide it ebbs and flows. I'm so lucky, normally it's only in full flow for a matter of weeks, but this time it drowned me, and trying to swim just made me sink faster. "I'm better than this" just led to another wave of frustration, more tears to more self-hate, and all the time seeing what effect all this was having on those around me, feeding the guilt that dogs my every breath.

Gotta love mixed metaphors.

I even beat myself up over the D Ts that accompanied withdrawal from tramadol. Tramadol's not supposed to be addictive, it's not supposed to cause problems with long-term use... but it did for me. And following it up with morphine patches wasn't the best idea.

And wanting people to ring, and begging people for coffee - well that's what it felt like to me; every text that wasn't answered, every date that was broken, was the knife that said "see you're really not worth knowing", cutting with the blade of knowing that however much I told myself I was hateful, I was clearly much, much worse in reality.

Depression really is evil. It twists your thinking and you can't see it unless someone points it out to you. The people who look at you in a funny way - how was I looking at them? When two people cancel a dinner date within minutes of each other - have they been talking about me behind my back? Insecurity leads in other ways - if the coffee date does happen, then you're just the object of someone's pity, don't tell them how you really are, talk about nonsense; or else the floodgates open and they get rather more dire gloom than they bargained for.

I don't do the "oh there are so many people in the world worse off than you" line to myself. There most certainly are, but there are also plenty who don't have to face what I do each day. I'm not jealous, I celebrate their fitness, health, and seeming lack of worry and self-examination. I wish that more of my friends and family were as fit and healthy. I don't look back on my childhood and think it was unhappy, although undoubtedly parts of it were, extremely so; it was what it was, and is now in the past. I just want to switch off the part of my brain that looks in the mirror constantly. I am getting better at reversing the language of hate I use to myself daily - I haven't yet put a stop to it, even while typing this, part of my brain is going "I I I, me me me you selfish cow" - but this is MY blog and I write about what I know, and what I know is me myself. So no apologies, no awkward pauses, just the truth.

I talk about my family all the time, in real life and in virtuality, and when I'm not talking about them, I'm talking about my friends, especially those in virtuality. What I've learned from them, how they make me laugh or cry, how there is always a kind word, or comfort, or a hug, if I just ask. And whatever people say about the internet not being real, or being full of people showing only the side of themselves they choose to reveal - hell, I know all that, but if so many people can be kind to me, then maybe there should be a tiny voice in my head saying that maybe I am worth knowing.

Wednesday, 17 November 2010

You *had* to be there...

She: Hello, Mrs Snow, this is x calling from Barclaycard, can I please take you through security?

Me: No - you rang me, you got my phone no from your records, and anyone pretending to be me would know my date of birth anyway.

She: But I have to make sure - for security

Me: But *you* rang *me* and I'm not going to give anyone who has rung *me* my security details over the phone.

She: But then I can't talk to you Mrs Snow!

Me: Well then there's no point having this conversation, is there? Are you going to tell me why you've rung, or not?

She: I'm sorry, I cannot divulge that information.

Me: So you're not going to tell me why you've rung me?

She: I'm sorry, I cannot divulge that information.

Me: Ok, then to whom do I make a formal complaint about the number of times you've been told not to ring me?

She: I'm sorry, I cannot divulge that information.

Me: Let's be utterly clear - you have rung me and won't tell me what you're calling me about? Well let's end this silliness shall we? Goodbye.

You really couldn't make it up...

Is it me or has security gone mad? I mean, if you suspected that you weren't speaking to the person you'd rung, you surely wouldn't ask for something as freely available as a date of birth, would you? Inside leg measurement, BMI, or date of last cervical smear maybe - but date of birth?

What really bugs me about this particular organisation is that they ring my mobile for a total of 3 rings and then hang up. How many people *not* expecting a call, answer their mobiles in that time? Not me for sure. And with mobility and hand problems, I doubt I will even when I'm sitting on the damn thing waiting for it to ring. No, they just want the missed call to be logged so that their poor unsuspecting vict errr customers will ring back. I refuse to give personal information out on incoming calls. There has to be *some* perks in getting older, and I want to be that old woman on the bench telling everyone she's 98 and making damned rude personal remarks :)

Thursday, 21 October 2010

Laughing at my own jokes

That'll get me into serious trouble one day, that will. For now, it's just another mildly funny episode in the nightmarish treacle pudding that today has been.

Ever get those nightmares where you know you want to do something really enjoyable, or really important, like take indeterminate children to the beach, or go swimming with someone, only to find that first you have to go to town to buy a costume, only you can't do that because another indeterminate child / pet / person has done something indescribable, so first you have to clean that up only you can't find the disinfectant; where before you know it it's almost midnight and you're still trying to reach the front door... and then you wake up.

Well today was one of those days for real. I decided pretty early on (well for me anyway) that I would go out and enjoy the sunshine rather than stay in the chill house and mope. But first of course I had to have breakfast; but before that I had to write my list of jobs for the day; but before that, I just had to peek a teensy at Facebook. Before I knew it, it was 11, no breakfast and no list. Never mind, the outside world was waiting. So eventually, dressed and slapped up, it's seemed important to straighten my hair. And then of course I had to check Facebook again... summoning all my willpower I closed it down, strode downstairs and...

it was then that I discovered the bills. Quick open, check balances and - what? Oh I need to sort that out. And then something else comes up during the same call. And oh yes, while I'm on, how about a third thing... I transferred a credit card balance over to another one. Good job, big savings to be had. Fine. And what's wonderful is I can't remember the PIN on the card that I'm transferring to but I have the PIN for the transferred out card etched on the insides of my eyelids. Until after 35 minutes of phone call, I realise that it's been so long since I've used this card, that actually, my eyelids have healed over... panic. Oh well, stick it in my purse and go try out what I think is the number in an ATM. With me so far? I know I can remember the digits, but are they in the right order...

oh and what's this other post? My Christmas card kits - only all the stuff I've ordered is out of stock and the order can't be met. Shall I go and reorder something new? I don't have that much time left and I'm a slow worker... No, I need fresh air. It can wait till later...

so now I need another going-out wee as my original going-out wee was so long ago it doesn't qualify as such any more. So I have to do another going-out wee. Never forget what your mother told you - if it was worth repeating THAT many times, it was worth remembering. Then I remember that I've left my sunglasses case in the bedroom - hooray I've saved myself an extra uncomfortable trip up the stairs. However, sunglasses case and purse don't fit into super-slip handbag. Not at the same time anyway - so now I have to transfer handbag contents over. OK fine and deep joy, look I've got £10 vouchers to use against the new jeans I need. Oh yay. And then...

handbag transfer complete, I don hat and gloves to realise that (a) the scarf is upstairs and (b) I'm not wearing the matching socks (I knitted all of them). Oh bugger. Never mind, the socks I cannot be arsed to change. But if it's as cold as it seems I will need that scarf...

Finally I am downstairs, coated, booted, bescarfed-hatted-and-gloved, and all set to go. I remove the necessary baggage off the scooter and manoeuver it over and out the front door....

and I've forgotten the scooter key in the other handbag. I go fetch.

With a feeling of utter blissful relief, I am finally ready to go. I get the scooter down off the front path onto the pavement. I lock the wheels back on, exchange a cheery wave and hello with my lovely neighbour over the road. By now it is a good hour and a half later than I had anticipated leaving the house. And what's more, while the house is freezing, outside is balmy, even the breeze is warm. So I shed the scarf and hat - the gloves remain coz you won't believe what a chill factor can be kicked up at 4 miles per hour. Eager to get going, anticipating the wind in my hair, I turn the key in the lock and

realise I've left the battery in the kitchen where it was charging. I huff and swear and lug the thing, step by simply painful step until it is on the machine. And then - FINALLY - I am off. And the breeze kisses the PIN number magically back onto the insides of my eyelids. Happy.

So what's this got to do with laughing at my own jokes? Well not a lot really. Except that in order to get into town, I have to cross a particularly busy and dangerous roundabout, under which there is an underpass thoughtfully provided and maintained by the council. And each time I go to use it, I smile to myself (inwardly I hope - but possibly not, I do catch people looking worriedly in my direction and cross to the other side of the road) and ask myself - stairs or slope? Almost every time that I'm on the scooter I choose the slope - well ok 100% of the time on the scooter if I'm honest - but always I ask myself the question, stairs or slope. Today, I answer myself sensibly - slope of course - and off I go.

Coming home, arriving in the same location, the traditional internal banter continues apace. Stairs or slope? Slope you mad old bat. OK you mardy mare, stairs it is. Weeeeee - down the slope. Well don't expect me to get it right every time *rolls eyes*. At the bottom, I catch up with a couple of youngsters throwing rechargeable lighter cases down which I have to concentrate to dodge. Unawares, I pass the cyclist who has pulled over to one side to allow me to pass - until she says "you're welcome". Belatedly, I thank her; and then ponder upon the possibility of intended sarcasm? Maybe? in her tone. Kicking myself (again inwardly, I can't have people calling me the scary scooter lady) for not simply answering with an expletive, and smiling at myself for my forbearance - well ok I just didn't think fast enough! - I continue and conclude my trip through the underpass. Only to discover that, having returned home by an alternative route, I am now on the wrong side of the road, heading back into town, and the entire subway journey was utterly and completely pointless and now has to be done in reverse. Actually I decide to turn around and do it frontwards, thankful that Young Master isn't there to remind me that I've always told him I have eyes in the back of my head.

And yes *smug smile* of course I forgot to transfer the money-off vouchers into the handbag I took with me.

Friday, 8 October 2010

Just a perfect day...

On Wednesday, Great Chief White Hair took the day off. It rained - well it absolutely chucked it down - as we packed a few things for Young Master's sleepover, and got ourselves ready for the day and evening. Got in the car, and drove to Mum's to pick up the wheelchair, and sister-in-law to drop off the sleepover stuff; then off to London.

The weather was perfect, a crisp autumn day with so many layers of clouds gadding across the sky on so many different levels, but all against a deep background of every blue imaginable. Looking through the sunroof it felt as though I could fall upwards into the deeps. The road was familiar, and urban, but nothing could be boring today.

We arrived at the O2 arena in good time for a very late 4.30 lunch. We chose Garfunkels from the many different choices, and although I tried to eat healthily, well it was a bit of a challenge! But we chose well, and it lasted us for the rest of the day.

After lunch, we went for a walk - well ok I was on the wheels! - and we did the circuit of the arena exterior. It was a real education - 12 ft high Norfok Reeds on the banks of the Thames in the heart of London? At least 4 different kinds of seagulls roosting and rooting together on the mud flats? The terraces in the river floor where the tide had dropped, the calmness of the scene which was heightened by the small craft and water taxis skimming along the river and not subverted either by the aircraft taking off from City Airport - all these seem to add to the perfection somehow. Sitting looking out across the river, feeling so very much at home in that way you do when something is incredibly familiar, yet so very strange and new at the same time. Listening to my idea of heaven - traffic, boats, planes, birds calling, the wind in the rushes, gulls arguing over a fish one has caught but another will eat, the lap of the water.

Well I know where I want to live when I win the lottery!

And then onwards and back inside for the Main Event. Being in a wheelchair does have its uses - early entry and being allowed into the VIP lounge being one of them! By now I was nervous, and excited, with that child's "is this really happening and am I really here?" butterfly flapping its way around my insides. When was the last time I looked forward to something this much, unconditionally, unhesitatingly, with my life-and-soulmate by my side? When was the last time we talked, non-stop, for what, 6 hours? And laughed so completely, so unaware, so uncluttered.

And then the band came on, and I stomped, banged, sang and sang, and it was just me and them and what, how many thousand other people (but they didn't matter). And laughed and smiled, and was joyous.

If you were to ask me what the meaning of true love is, I'd say it's when someone gives up their busy time to take you somewhere they don't particularly want to go, to see something they don't particularly want to see, without ever complaining that they will have to look after you even more than normal for days afterwards, and smiling and laughing, making it one of the best, most perfect days of your life.

Wednesday, 15 September 2010

And finally...

The last week I have spent blocking, or researching blocking, or getting together blocking materials. Never having blocked any of the knitted garments I've attempted over the years probably explains the lack of similarity between my finished products and the pictures on the pattern covers! But these lacy nothings were so important, it had to be done right. My first attempt could so nearly have been a disaster; I forgot PR's table centre was shaped, and so pinned it round on the lacemaking pillow. Thankfully it was easy to tweak gently into shape at the end, although perhaps not so well as if I'd gone for the Big Solution earlier. Thankfully DT's doily was supposed to be round, and just fit the pillow.

Then came the square one. I picked brains, looked at countless sites that recommended sticking pins into mattresses or carpets (neither of which would go down a treat with Great Chief White Hair), but finally came up with two sites that had wonderful recommendations. One gave Lego-clear instructions for creating a frame, which could be taken apart with wing-nuts for storage, and which will definitely be a possibility if I *ever* get round to attempting that gorgeous peacock shawl I spent years tracking down the pattern for. But one I mentioned to OH and he immediately gave the thumbs up as both practical and suitable for our domestic arrangements - blocks of loft insulation. This can be taped together for added width, or added to if necessary for huge projects. At £5 per block, it can also be fairly reasonably replaced when no longer able to support the tension needed. To prevent any unwanted water absorption, I lined both pillow and foam with old cotton tea towels. I'll keep an eye out for a lightweight alternative that will be big enough to avoid a join.

The pics above are of the equipment cobbled together for these early attempts. The lacemaking pillow was picked up as part of a tatting set from my local charity shop bought for almost £none, at a time a few years back when I was hunting for new challenges. Needless to say I've never even tried tatting, and intend to put the bobbins on Ebay; but the pillow more than paid for itself this week.

The pins, well I've been a bit naughty with those. I *think* the small box of glass headed pins are stainless steel, as they were bought from a craft shop; but the larger box are almost certainly not; the wheel came in a cheap sewing kit so almost certainly are not; and as for the notice board pins... the only thing I got right for sure were the almost-hat-pins. This is something I intend to rectify for next time - rust would NOT look good on knitted lace. The largest pins are sitting in a soap-dish affair I was most disappointed with - it's magnetised so the pins don't fall off, but although it looks deep (and it is) all that base is full of magnet, with only a tiny shallow indent for the pins themselves. Of course you only discover this when you take it out the blister pack...

Soluble starch was hard to find, that is, until after I'd found it online! Only then did I discover that Lakeland sell it; but I now have enough for the foreseeable future. It's too old-fashioned for supermarket shelves, and decent haberdasheries have gone to that eternal shelf-lined cupboard in the sky. But find some I did, and found it very easy to get on with. All three table centres have been soaked in a starch solution to give the crochet points a bit of solidarity, and again as a first attempt I'm pleased with the outcome.

So now I just have to find a more suitable home for the insulation blocks and the pillow. This I sincerely hope is just the start of my lace adventures - I love it. Fingers crossed that my new den (aka the box room) is ready by Christmas :o) DS will be handing out the goodies on a trip to the old school next week, apart from VH's which will be hand-delivered to her door. Of course there are others that I wished I'd created something for, one in particular I think of as a friend rather than school staff; but then hey, who needs an excuse to create something else that looks kind of beautiful?

Part trois

My third and final gift I have two photos of - I'll try to publish both! This is because although it is my clear favourite of the three, it used a shiny mercerised cotton which didn't give great stitch definition in my opinion, so I've had to do a close-up to get the detail right. Standard 4 ply on 3.25 mm needles (the others were knitted on 1.5mm needles which felt like knitting with straw at first!) This is for VH, who like DS has now left the school. Although she was originally the nursery nurse, then after the nursery class teacher, she has also kept a close eye on DS throughout his years in Junior, getting to know and understand him *possibly* better than anyone else in the school. I miss her! The practice at crocheting chains came from knitting each square individually, then crocheting them together; knitting the border and then crocheting 2 rows of chain around that. Each square took about 2 hours to complete, apart from the ones at the start of each row, because of the crocheting; but I am delighted with the result, and what I learned from the experience.

DS is now at secondary school, having earned a place at the local grammar school. He absolutely loves it, is so confident, and already recognised by his smile. We are so very very proud of him.

Part Deux

Ok so I got a photo in successfully, doesn't mean I know how to do it with 3! I had trouble with DT's (yeah haha) because I didn't know how to crochet, and it calls for a scalloped crochet edging. Nevertheless I taught myself to create almost consistent chains by the simple expedient of undoing them over and over again until they looked right. Then my beautiful sister came over for a holiday and did the rest for me! Suffice to say, all three table centres took rather longer than anticipated, allowing for nights when I was simply too shattered doing nothing all day to pick any knitting up; so the gifts are a tad on the late side. Nevertheless, here is PR's gift. PR and I were at primary school together, and worked for a while as dinner ladies when I was still fit enough to do so. Since then, she looked after DS during lunch breaks, breakfast clubs, and always had an eye open for him when he needed intervention. He really misses her. This is knitted in pastels, the same cotton and the same source as the blue one, but with spring tones. Again I have loads left over. Although I blocked this round, thank goodness the shape of it has come through. This was the first bit of blocking I'd ever done, more on that later! I left the crocheting for this one until after I'd finished the third gift, and am very pleased I did - the extra practice ironed out the tension gremlins, I gained in confidence and discovered that omitting the dcs and just using slip stitch stopped the doily from pinching at the edges. Otherwise it would have looked awful.

Don't tsk me. I've been busy!

Well and so I have. I've been studying (haha) and knitting; I've been poorly, attended OUSA Conference, been poorly, had a poorly mum, and am poorly again. Oh so what, that's life. But there are good....ish reasons for not having blogged for a while.

I've got a very respectable pass mark for my studying, which makes me very happy as studying has not been too successful in recent years. But mostly I'm pleased with my crafting results, which won't bear scrutiny from designer types, but which make me happy :o). If I can work out how to, I'll put photos in - ooo another first!

I decided in November last year that I would create individual gifts for certain teachers who have really and truly, repeatedly if not daily, put themselves out to nurture DS through some difficult times at school. I could have gone to the local, rather lovely, boutique of all things different, but instead wanted to knit something that said "thank you" in every stitch. Not having the brains or finance to buy books, I trawled the web for free sites, my favourite being Knitting Pattern Central, and found patterns for the projects. I can't do individual credits at this stage, as if I manage to put the photos on it will be a minor miracle; however these were all sourced free of charge, and all found through KPC. So I hope I'm not breaking copyright. I started off with one for a male teacher, DT. He's looked after DS through thick and thin since he joined Juniors, and ended up as his class teacher in Year 6. OK so it's a bit twee giving a bloke knitted lace, so I did it in variegated blue (cue screams of sexual stereotyping please!) cotton which I bought on Ebay from Paraguay for almost no money at all. Incredible value, 1000m balls, and I've used about half of one. I'm tempted to knit myself something with what remains, tho I'll probably have to double it up to get somewhere near a 4-ply thickness. Anyway the finished item appears at the top. It looks a bit off-circular because of the colour variations in the cotton, but these actually enhance the flounces in the lace pattern.

Tuesday, 23 March 2010

From cross-stitch to cross types

Over the weekend I went to the Stitch and Craft Show at Olympia. Big Chief White Hair accompanied, guided, created paths, and generally was a thoroughly nice chap all day despite problems of his own, including an almost pathological fear of knitting needles. I shook hands with Jane Greenoff, who didn't mind being called a cross stitch goddess when fibro fog flared at a most inopportune moment; I LOVED her hair which was curly and silver-fox with lilac tips - she is stunning, it has to be said. And I have to say that while there were the odd incidents of doziness among my crafting sisters, the vast majority looked out for me on the scooter, offered help, showed me stuff on stalls that I couldn't ride up to, and I was overwhelmed by all the hints on how to take people's legs out from under them with my walking sticks! Quite apart from all the lovely crafty and haberdashery-y stuff, it was a very reaffirming day, despite the sore throat and croaking like a frog. I was even allowed to add to my roomfull of stash with some rather lovely South American hand-dyed sock wool.

Saturday was rather contrasted by yesterday; for reasons far too boring to mention, I sat for 4 hours in a hospital bay with other G P referrals having some tests run. The others we sat with had been there for a couple of hours longer than us, and perhaps didn't have my prior experience so hadn't brought any books or magazines with which to while away the time; instead, they talked, mostly about the length of time they'd been waiting, or told jokes. K and I joined in if we felt like it, which mostly we didn't because he had the D S and I had my knitting; but there was something almost furtive about the way the jokes were shared, initially at least. Irish, Essex and blonde all combined to make one joke which I wish I could remember because it would stand scrutiny on my English course - it wasn't a particularly funny joke because I'd heard it several times before, and it hadn't needed anyone in it to be Irish, from Essex, or blonde, to have been very funny the first time around. But this in turn led to much funnier home-grown jokes told for the sake of playing with language alone, and it has to be said made the atmosphere much friendlier and helped pass the time too. But while this humour didn't do enough, sadly, to abate the cross air, when D H had to return home so that the house wouldn't be empty for D S after school, I had offers of help to collect my sticks'n'stuff to walk to the exam room.

So don't believe it when people say chivalry is dead. In the sense of "little women can't turn door handles" it is, and three cheers I say; but what has taken its place is that men and women alike seem to evaluate better what help others need, regardless of their age and sex. Not everyone, not all the time, and maybe not at all in some places; there was an example on Saturday of help not being rendered at all despite D H requesting - and needing - it, apparently and unfortunately based on his age, sex and size. But I do witness frequent offers of assistance from people wherever I go, whether offered to me or to other people, and it belies talk of a community spirit vacuum. Men don't doff hats or hold doors open for women just because they are women; but young people and old alike do look out for each other and offer help because they genuinely think it might be needed.

Of course again there are exceptions, such as the cab driver I shouted at the other day. He sits on a cab rank not far from the house, and if I call for one at a certain time of the day, it would be odds on that he would turn up. And it would go something like this. I'd approach the cab, by which time he'd spot the sticks, be out the door, round to my side and open the door before I could scrabble for the door handle; but then he would grab a part of my body - despite my oft-repeated "no thank you"s - and lever me in through the door (I should make it clear this is a black cab). On arrival, again deaf to my "I'm Ok"s, he would grab a bit of me to pull me out. Now I'm not complaining about his offers of help, just that sometimes they seemed an excuse for a course of action he had already decided to take whether I wanted his help or not.

Anyway, about a month ago - or was it only a fortnight? - he arrived again, and my heart sank. A neighbour was on the other side of the road getting into or out of his car; and the black cab rolled up, just far away from the front door that he could get round to my car door before I got there. And, in a progressively more daring move than he had made before - each prior grab had been just a teensy bit more daring and a teensy bit more close and a helluva lot less appreciated than the one before - he grabbed me by the left shoulder and by my right arm in a one-sided bear hug. And I almost screamed "DON'T TOUCH ME!!!!" It was the accumulation of many such episodes, many such cab journeys with this man, many such tiny humiliations at his hands that I simply lost control - plus more than a pinch of fibro-fog getting in the way of a more measured reply to his hands. The neighbour across the road literally jumped; the driver certainly leapt three feet backward, and I got into the cab under my own steam and slammed the door. The ensuing journey passed in embarrassed silence, and suffice to say that although I have had need of cabs at that time of the day in the intervening period, I haven't seen him since.

I dunno what his motives were. I dunno if he looks at me and thinks poor thing, so young (I'm not!) oh two sticks, I dunno. I dunno if he's a filty letch who clocks my 40FFs and thinks the sticks render me super-vulnerable. What I do know is that however I retell the story, however much hilarity with girlfriends ensues, what was not funny was the shaking I couldn't control for the next half an hour, even talking to D H on my mobile to talk it out. The feeling that being disabled means that people don't have to listen to you any more; that they can touch you wherever and however they want; but most of all that they can ask meaningless questions of you and totally ignore the answers because they have the power.

Not THIS girl, not THIS lifetime.

And Saturday was actually a healing experience.

Tuesday, 9 March 2010

Methotrexate Mondays

are the pits. And increasingly dragging into Tuesday as well. Delightful.

Saturday, 6 March 2010

Saturday afternoon

Young Master is being collected from one of his last birthday parties at primary school. Waiting here for him is a certificate from High School to congratulate him on qualifying for entry. His uniform list includes a rugby shirt in house colours; running shoes; shin pads and a gum shield.

My baby's growing up.

Wednesday, 3 March 2010

Naughty naughty girl

No posts since July? Disgraceful!

Actually there's a good reason for that *she says thinking fast on her feet*. My last post said quite glibly that life is just too short for posts about D W P, D L A etc. Well that's true. However that has also been just about the entire content of my life for the last few months, it's been impossible at times to eat, think, sleep or wear anything else.

There aren't enough hours in the day, hairs on my head or fingernails left to expand on all the ins and outs. Suffice to say, I got the long-term award of DLA that I wanted - lowest rate care only, at under £18 a week. I had had a medical "exam", the report from which read like Alice in Wonderland, and had me shouting "I'M CURED" from the rooftops; being an ungrateful hussy and not liking fiction in my daily porridge, I got the report discredited, yay to me.

Another work of fiction reared up in my muesli, however; the reconsideration was sent out on the same day as a report was requested, sent, reviewed, written, sent back and decided upon - all on the same day, have you ever known the Civil Service to act in real time? Have you? Well I have *juts out chin proudly*. In fact this letter - which can take up to 4 days in DWP's post room - arrived on my doormat the very next day. Coincidence? Hmmmmm...

Well anyway, last week I won highest rate mobility, highest rate care. I can't walk 200m slowly but effectively any more *sob* I don't walk with a limp any more (well ok I never did, that was Alice's White Rabbit), I do need help by night and by day, and I can't be trusted to take my medication. Funny that - I could have told them all that back in July - in fact - I DID!!! but let's be fair Jen, if the Chief Executive says it was because of "new evidence on appeal" - well Chief Executives don't gloss over cracks in the wallpaper, now do they?

Oh dear I really am that sad, bitter and twisted old bag, aren't I. Oh well *rubs hands and revels in it*.

Here's the email I'm about to send to my lovely MP. Shame he's on the wrong side of th'House. Can't have everything. I've disguised names, including lovely people as well as less lovely people in the interests of fairness and not being sued. But I can't keep laying this on the shoulders of people I kinda love and who have their own fair share of evil treatment served with their daily hash browns. They've supported me, carried me, and typed for me when my own fingers wanted to give up. This is for them.

Dear Mr D
Thank you for your letter of 1 March and enclosed reply from T of D W P. I'm writing to inform you of the action we now propose to take, as it may be possible that ultimately we need your help in approaching the Ombudsman (Parliamentary Commissioner for Administration).
T's letter is sadly woefully inadequate. He glosses over anything uncomfortable from the D W P point of view, is very inaccurate in places, and omits dealing with many points about which we have complained. For example he states that if a medical report "is unclear or incomplete it will not be used by the decision maker when considering a claim". My first phone call to D W P on receiving the medical report asked for a transcription because the handwriting was so bad (which incidentally we've never received). It was later shown to have many omissions - yet we have it in writing that it definitely was used as the basis for the original decision, contrary to what has now been stated. This is why we were so shocked to find that, even with such a major source of information having been discredited, the original decision based upon it was nevertheless upheld.
T also implies that the latest decision (which we believe to be the right one) was based upon the further information supplied on appeal to the decision maker: my husband's phone call to her, and the form sent in by the rheumatology nurse specialist (A), on or around 8 February. A did send in the form as requested, but stated very clearly on it that it asked for less information than she had already supplied to D W P on 4 November, some 10 weeks before the reconsideration was issued, and enclosed a further copy of that letter; and all the information my husband supplied over the phone was obtained from my original claim form which of course was in the possession of D W P from the middle of July. We suspect, again very sadly, that the D W P's volte face has far more to do with your involvement and our subsequent request for information under the F o I Act than it has to any "new" information supplied on appeal.
As for the Freedom of Information request, we've yet to have an acknowledgement. This has not been mentioned by T at all, but we remain skeptical as to how it was possible to: issue a request for a medical opinion to the in-house medical team; have a full and independent review conducted by them on the paperwork supplied (some of it dating back 16 months or so); a report written, returned to and reviewed by the decision maker; and a letter being sent out to me with the reconsideration decision, all on the same day (20 Jan), and in fact reaching me the following morning. This is ignoring the fact that that fresh medical advice contained almost word-for-word the substance of the original decision letter, and nothing more on any of the other questions asked. We have been advised separately that letters take up to 4 days within the D W P's postal service before they reach Royal Mail, and in fact this is how long it took for the final decision letter to reach us.
We are therefore going to take the steps outlined at the end of T's letter and contact the Independent Case Examiner about these and all the issues we've raised since October. However I'm not sure whether matters relating to the wider operation of D W P not specific to my claim can be dealt with without the involvement of the Ombudsman. There is clear Civil Service-wide guidance on the issue of determinations and assessments and how the means to appeal them must be freely and readily available to those affected by them, which the D W P contravenes. It is totally unacceptable for D W P to insist that one of its most vulnerable sectors of customers should have to go hunting for this information even to external providers such as Citizens' Advice Bureaux. In my opinion this is nothing more than a straightforward, effective (because I know others have been prevented from appealing because of it) and blatant means of preventing appeals from being made. There isn't even an alternative format of the appeal form available to claimants - it has to be done in writing on a specific form - and it's for disabled people!!! I know I've mentioned it before, but no matter how torturous the route to finding the information online is, the decision letters don't even tell people it's there, much less give a direct link to it! In fact nothing on the letters suggests or implies that information on appealing can be obtained by the simple expedient of ringing D W P (simple if, unlike me, they can easily use the phone, that is).

Finally there is the matter of the signature form. Again this is something affecting not just me, but anyone who claims Disability Living Allowance. It became absolutely clear that D W P staff believe claimants have the right to sign their agreement to any report written about them by an ATOS medical advisor who conducts an examination of them. L, the lady mentioned in the last few paragraphs of T's letter, has been an absolute star throughout this horrendous experience. She has told me that no-one she approached on her floor knew that the only thing a claimant signs is a "Proof of Identity" form. In fact I'm attaching a copy for your own information. As you will see, no explanation is given to the person signing it, it is totally unclear what it is or will be used for, and I don't remember providing any supporting documentation, eg passport, to validate it (but I have a dodgy memory, which is why I have all the documentary evidence supporting my complaint). Nevertheless the implication of this is enormous - that when people do take what can be the huge and stressful step of complaining about a doctor's report, pitting their word against someone they might believe is unassailable, the member of staff dealing with them is prejudiced by the belief that they agreed the report on the day it was written. L herself, the "operational Team Leader" was totally unaware that the report could have been finished up to a week after the doctor left my home, and without my ever having read it. I am concerned that because this report was ultimately discredited, these issues will be simply swept under the carpet.

I am hopeful that at least some of these concerns will be addressed fully by ICE. However I did want to warn you about the bigger picture. I totally appreciate everything you've done on my behalf, and for being prepared to become involved, especially at a time when you must be extremely busy with preparations for the election. For what it's worth, I'm sorry that we have such an old-fashioned election system based upon party ideologies and not about the people we think can support and represent us the best! Good luck in May.

So there we have it. ICE is the Independent Case Examiner and has nothing whatsoever to do with breakfast, weetabix or otherwise. Receiving what I should be getting, and a nice backdated lump sum to boot, will act as a panacea to my bank account, but I won't be bought off so easily. This one's for everyone for whom questioning the word of a doctor, facing the impossibility of leaving the house to get an appeal form, completing that form in writing with damaged hands, or no hands, or just facing beaurocratic red tape, is one stressful, pain-causing, hunger-relieving, independence-creating step too far.