Housewifey organisational dilemma (where’s my birthdays book?)!

.

I cannot find my ‘birthdays book’

No matter how often I look

Searching high and searching low

In every cranny, every nook.

Still going back to the place

Under the stairs, the book-shaped space.

 .

I’ve had that book since in my teens

It’s hard to say how much it means

Cat paintings on each other page

The people met at every age

Now I want to note down dates

Of the special days of my new mates

.

I’m jotting dates on tea-stained paper

Which may seem a random caper

But I think –

“It’s got to turn up soon

It can’t be far

It’s not immune

To being found

Ere the blue moon”

.

“Or is it??”

..

Missing Birthdays Book

x

Photo Challenge for CRPS Awareness, Day 03

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 03 – A picture of something that makes you laugh

What keeps me laughing is having a view of life which is skewed towards the silliness side! I like seeing the funny side of things, and that includes the funny side of my condition and the bizarre things I find myself doing or saying sometimes, as well as having silly impromptu conversations with friends to make each other chuckle, laughing at the way the world is portrayed through amusingly stereotyped adverts, laughing at any opportunity, really ;-D

Laughter is one of the things that carries me through and silliness can help to facilitate that. So here’s a pic’ of a moment of silliness before ‘planking’ got dangerous and it was just daft people like me playing ‘The Lying Down Game’ 😉

Lying down game

x

Tai Chi physio’s, a gold medal, and being proud of our achievements

The weekend before last, on Saturday night, I went out…. *gasp*,… on my own…. *woah*,… and I spent the evening with Tai Chi-ers and kickboxers whilst sitting in…. a wine bar *ohmygoodnesswhatevernext?* and….(wait for iiiiit….)… I drank two small pots of tea…!

Dang, I sure know how to party! 😉

I can’t tell you how wonderful it is to meet people who take my disability in their stride. It’s not something that instantly makes sense as my disability is not apparent to the casual observer, but I’ve found that my teacher and classmates now spot when something’s not right. They clock my slackened facial muscles and my lack of twinkle in my eyes on a bad day. They don’t need the visual cues of me wielding my walking stick or going to sit on the floor to drink fluids to stop me from passing out. They spot it earlier than that these days. Tai Chi students in the West often begin learning it for health reasons, and as a result I have a teacher who’s used to working around health issues, and classmates with insight and understanding from their own experiences. I am not my disability, I am me, but my disability is something I have to constantly work around, so having people around who don’t bat an eyelid at continuing a conversation from floor level is pretty darn refreshing! 😀

I practice Tai Chi during my physio time when I can. Physio time also includes getting washed, dressed, fed, etc, so on bad days Tai Chi is a no-go. But with Magic Dude to make me dinner on days where I had to give up getting-food-time to be able go to a Tai Chi class for physio instead.. it’s viable. I have to make it viable because it’s crucial to my health.

I began learning it when I could no longer do my physio exercises at the gym (owing to good ole Dysautonomia tending me towards the whole throwing-up and passing-out thing!). It became my new form of physio. Instead of going to the gym twice a week to do physio exercises, I have instead been going to Tai Chi twice a week. It felt like a step down because I can no longer do any form of even sitting-down-cardio’, and that still bothers me healthwise, but if someone came along and magicked me healthy tomorrow I’d still continue with Tai Chi.

I entered the local interclub tournament last October. I’ve never been competitive with others. I always felt bad about winning anything because I didn’t want to hurt anyone’s feelings by accidentally doing better than them! I was nervous. By nature I seem to have always been apologetic, and competitions don’t come naturally to me! Living with a disability changed that somewhat, and maybe getting a bit older and a bit wiser too. I have a disability which affects every single aspect of my life, but I am still me, and when I compete it is in defiance of my condition. My motivation is not drawn from a basic competitive nature, or a wish to be the best, it is drawn from battling the CRPS. I agreed to enter a couple of tournaments because, well, why not? It turns out I’m not half bad, and every success is an in-your-face to my health! If I have a care assistant to drive me and look after me before and after (i.e. Magic Dude on his days off), then spending 4 minutes of physio time doing some Tai Chi in shiny pyjamas is actually viable!

Before the shiny pyjamas!

Before the shiny pyjamas!

I approach the Tai Chi the same way that I approached the studying… yes, I am disabled, I am limited and restricted, but I’m not going to let that stop me from seeing how far I can get. I have to approach things differently than I would if I was healthy. I can’t be active for long, and then I have to rest for hours to bring the pain and other symptoms back down again. Everything I do has to be flexibly based. The physio is crucial to my pain management however, so why not spend some physio time seeing what I can achieve? I have to live on the sofa with a blanket and a hot water bottle the majority of the time, but why should that stop me? When I can physio it’s good to do something useful but, if I can occasionally get to do something I actually enjoy then whooop!

To try to get me to realise that I’m not half bad at Tai Chi, my teacher had me enter a National tournament. It was two weekends ago. Magic Dude drove us all to the venue, and got me hot water bottles and drinks from the canteen there to keep me going. I was in the ladies beginners class. As far as I’m aware my competitors were able-bodied.

I won.

Ohmygosh, I won!

My teacher’s response was kinda along the ‘I told you so’ line! Awww

One of the few pic's that came out in the low lighting so of course it would be one where I'm facing the other way and have got my arms up like a zombie, hehe

One of the few pic’s that came out in the low lighting so of course it would be one where I’m facing the other way and have got my arms up like a zombie!

The dysautonomia kicked in just before I had to perform. The 5-6 minutes I was prepared for turned out to be a mere 4 minutes on the day, which meant having to speed things up and hit the right time marker without any practice. Eek! Fight or flight decided it was time to increase the heart rate, which (in me) results in light-headedness, dumbass brain, and all my limbs get shaky. I find that performance nerves are minimal owing to my need to focus on my condition, but the fight or flight response more than makes up for that! I went wrong and had to blag it into the correct move. I wobbled on one leg so I made sure I took my time so that I didn’t wobble on the other leg. I was way worse than I usually am in class. But I won! *glee* Take that CRPS and Dysautonomia… mwoohaaahaaahaaa!

That went on a note and into my jar of joy!

My Jar of Joy at the beginning of 2013

My Jar of Joy at the beginning of 2013

I juuuust about got myself mostly functioning by a week later to be able to join my Tai Chi teacher, the kickboxing teacher, and students of both disciplines in the nice-cup-of-tea (wine) bar. And though I couldn’t quite accept the “And here she is.. our Tai Chi champion” (every time they said “champion” I interjected “beginner” and then got told off for doing so! Self-deprecation is something I’m really good at!) I am actually really proud of myself. For going out on a limb and giving it a whirl. For doing it despite my health. In fact for doing it because of my health (both to help it and to stick my fingers up at my conditions)!

When I started writing this it was two days since the tea (wine) bar gathering. My pain levels were not as bad as I would have expected, even more surprising as I was on a really unhelpful chair regarding legs pain. I think that the happy dopamine effect of being out with real-live-3D people was doing wonders at combating the usually inevitable pain levels! But two days later and I was sat here with my breakfast and in my head was just one event from that evening. That of a kickboxer turning to their teacher and saying “Oh, are there Tai Chi-ers here as well as kickboxers, then?”. Which is a perfectly acceptable question. The problem was that in my obviously sober state I registered the tone of voice (kinda ‘ewwww’) and the facial expression to match.

I’ve worked so so hard to just get through each day with my health the way it is. I’ve had to downgrade my physio activity owing to health deterioration. I was fortunate to find a physio alternative which I love, which I’m not half bad at, and which is now setting me on a path of physio in-your-face-CRPS. I’m totally stoked. I don’t cap my potential. It’s called potential for a reason – it is unknown. So I aim high and see what happens. I’m used to being dismissed by some of the kickboxers, they often have no interest in Tai Chi and that’s fair enough. But the ‘ewwww’ face and tone of voice as the eyes flicked over to the two Tai Chi students really struck a chord. I did not let it bug me at the time. So why did it bug me two days later?

At the time I was high on dopamine and enjoying conversations with actual real in-the-flesh people who, as it turned out, I have a lot in common with regarding our values and approach to life, (not to mention meeting a fellow Chai tea drinker).

(Hehe, I’ve just got to pause and realise what I just said… about students of Tai Chi drinking Chai Tea! *ka-snort* I’m so easily amused)!

But for some reason the disdain stuck in my memory and it didn’t feel nice at all. It’s not youth (a far younger kickboxer there was not only very respectful about Tai Chi but had declared earlier that he thinks Tai Chi is really hard), it is more about a lack of understanding and of basic respect. I’ve met experienced kickboxers who have no interest in Tai Chi whatsoever but they nonetheless have a great respect for it, which is really helpful to me for feeling that I still have some sort of value in what I do. Perhaps the ‘ewwww’ person will learn to be respectful, or maybe they won’t. It shouldn’t bother me either way. But it does. And when I cut to the meat of it… it bothers me because I have achieved so much for someone so ill, that I rarely get to go out and see people, that I never thought I’d ever win anything let alone in a sport, that I am aiming for the stars knowing full well that they’re too far away and I don’t have a spacesuit or a long enough ladder. It bothers me because for the first time in many years of ill health I feel like I’m someone in my own right even to some able-bodied people. How daft is that? I’m used to meeting wonderful people who also have conditions they’re dealing with, but I’m not used to healthy people getting close or caring. My Local Friend, who met me since I became disabled but still became my friend anyway, is an exception to what I was beginning to think was a pretty strong ‘rule’ of disabled life. (Big shout out also to all my friends who knew me before I was disabled and yet have weathered the changes and are still my wonderful, beautiful friends now, love you so much, xxx).

Who cares what other people think? Right? We should be the best we can and be proud of everything we achieve. The reason that I am bothered by their attitude is because it taps into my own fears. I am afraid of losing what I have found. Of being dismissed and sidelined again. Of rediscovering that magical form of invisibility that disability can endow.

The answer, of course, is to keep focused on what I love doing. I won’t lose Tai Chi. I might lose the ability to compete in tournaments. I might find that when pitted against more experienced competitors that my natural ability just doesn’t cut it any more against their physical health and training. But I didn’t start learning Tai Chi to do tournaments. I started it to help keep my body from losing function, what I’ve got out of it is so much more. More from the perspective of my health, and more from the perspective of my heart. Don’t get me wrong, I’m still aiming for the stars, and if someone’s got a ladder to lend me and if a spacesuit shows up on Ebay with biddings starting at 99p I’ll be there! I’ve just had a wobble. We all do. But if we hang onto that core of who we are and what we love then who knows where it will take us?

And no matter what happens, I will know that I did what I wanted to do, I followed my dreams as far as I could. Who’d have thought that a chronically ill girl like me with multiple conditions and full-body intractable pain could be someone in sport? It turns out that even when managing endless symptoms throughout each day, once in a while I can manage it well enough to spend 4 or 5 minutes with the able-bodied Tai Chi-ers. That’s surely something to be proud of, no matter what other people think. I wonder if I can be someone at a higher level than beginners? Whatever happens I’m not giving up, and I’ll always have fond memories and tangible reminders…

A gold medal for my physio work :-D

Ladies beginners class, national comp, gold 😀

x

A jar of joy!

I’ve seen a suggestion flitting about on the social networks about noting down the good things in a slightly different way than we might usually think of, and I think it’s a great idea so I decided that I would follow the suggestion myself.

The suggestion begins with you re-using an old jar by giving it a new purpose for 2013….

I have a jam jar that I attempted my first ever glass painting on years ago, so it’s really messily done, but it’s still with me so rather than it being a jar-of-random-stuff-coz-I-don’t-know-where-else-to-put-them it has been reassigned to the job of my 2013 Jar of Joys! Of course, we could use any container we like, I think it adds a little something more if the container is pretty or meaningful in some way although, on the other hand, a fresh start with something new is also very meaningful and adds to the cause, too.

My Jar of Joy at the beginning of 2013

My Jar of Joy at the beginning of 2013

Then….

The idea is that whenever a good thing happens in 2013 we write a note of it (little bits of different coloured or patterned paper would be really pretty) and pop the notes into the jar. At the end of 2013 we have a jar of reminders of all the good things that it’s so easy to forget or not give it the importance it deserves in our memory. For those of us living with health conditions, or any other challenging life anomaly, this could be really beneficial to our satisfaction at the end of 2013 and looking ahead to 2014. Many of us have experienced the mixed emotions at the end of one dastardly tough year and trying to feel like it was worth it and that the new year will somehow be better. It is easy to remember the hardships, especially when they’re reinforced in our memories by occurring daily, so it’s even more important to remind ourselves of the little joys that so easily get lost along the way, x

From an ill health perspective ‘good things’ would mean slightly different things than perhaps a rock band roadie or NASA scientist might imagine 😉 If we manage a physio’ session with less pain, clean the bathroom and still have enough juice left to make ourselves a congratulatory cup of tea, if a good friend comes to visit and lighten our day, if we have a meal with family, or get to visit a library or museum  or see a film or play, If we dress ourselves without as much pain as usual, or put on an item of clothing that we couldn’t put on ourselves for a long time, any of these things and more are experiences and achievements to allow ourselves a moment smiling and a warmth in our hearts, and if they make you grin then they deserve to get jotted down and added to the jar. Think about what will make you smile when you look at them again at the end of the year, and those are the ones to note down.

I’ve started mine.So far there is note in there about one of my best buds coming round on New Year’s Eve to natter, make christmas Lego and pull crackers 🙂 And a note about Magic Dude taking me to the cinema on a date. (Yes, we live in the same house, but dates are great ways to treat yourselves to some couple time instead of worrying about bills or who’s going to do the dishes)! Oh yes, and one about sculpting in the snow with the nieces, too 🙂

I kept a couple of party hats that came out of christmas crackers which I’m currently using as my note paper for the jar!

christmas hats for the jar of joy

I have a tendency to keep things, I’m a sentimental 😉 So last year I kept scraps of memories in the form of things like cinema tickets and birthday cards, but this Jar of Joys allows me to note down moments that warmed my heart and made me smile as well. These are the moments that lift us, and make us feel all warm on the inside. So I reckon collecting them is no bad thing, and getting to read them during the next tricky transition from 2013 to 2014 seems ideal to me. I shall keep jotting down joys and see what I end up with at the end of the year 😀

x

Dear 16 year old me…

Nope this isn’t a trick. Nor is it time travel. I don’t know what this is. Just go with your heart and know that this is from a friend, even if you don’t really believe that I am an older you with a couple of decades more experience and life stories to tell.

I know you are fretting about your studies at the moment. Am I going to tell you what happens? Not exactly, that would defeat the object of experience, but I will share some of what I know is important to where you are now.

You know how you all sit around in the common room at school and discuss who will get married first, who will have kids first, who’ll be the old spinster… all that jazz? Well, despite the protests of your friends that you’ll meet someone and get married soon, you actually have a pretty good take on things. You have no illusions about life and marriage in that sense, you know you best, and you must stick to your guns and be you no matter what. When the time comes to choose your road, you will pick the right one. And this will make sense when the moment arrives. You won’t see it coming, but you’ll know what’s right in your heart. Education is not something you should allow anyone to take from you. It’s where you belong. Not because of Grammar-girl entrenched ideas, it’s because you fit the bill as someone who loves learning, but not learning by rote. It is superb to always have questions, to always want to know ‘why?’. You’ll end up with a badge clipped to your bag that reads “question everything”, which makes you smile whenever you see it. You are allowed to set your brain free.

You won’t find out just how well you fit into academic exploration for some years, yet, but your heart will sing for the joy of what you will find that you are capable of. And yes, you will be able to make a difference by doing so. Stick with it kiddo. And stop that blummin’ nonsense thinking that you’re not that intelligent or capable, okay? Your brain breezed through school when you were a kid, and even with your tendency to bumble apologetically through the years you won’t have slipped anywhere near as far as you seem to have convinced yourself you have.

When you feel you’ve hit educational rock bottom, look into your heart to decide what to do next. You’ll see that there’s no question. And everything really will be okay. Education is not a fleeting thing for you. Other people get qualifications to get jobs, earn more money and go ‘up’ in the world. I know you hate all this focus on materialistic stuff but don’t worry, that word ‘education’ that seems only to stand for spoon-fed learning will actually transform into a love of question-fuelled usefulness when you find new skills which open up possibilities that you find glorious and exciting. Just choose what you want to learn as you go along. You’ll get to that place, don’t worry, enjoy.

I know that there are far bigger things muddling up your head right now. And it’s understandable. You know what? Cut yourself some slack, girl. You’ve been stronger, far stronger, than you realise. You’re in that place where you feel grown-up but don’t have the practice at it, yet. As you get older the surprise is that you’ll experience no magical change into ‘grown-up’-ness. You will always be you. I know this makes sense to you, but the reality is more so than you think. And you’ve every right to be you. Nothing that anyone else has ever done, or ever will do, can take that away from you. You should not be subservient, you are not a doormat, and you always have the right to stand up and walk away from a situation. Looking back at what you feel now galls me. Know that if I could hug you now, I would. And know too that this will pass, you will get through it, and you will discover a stronger you as a result. Hang onto you and the future will trundle on in and take you away from this time. And the years will fade what you are feeling now, although it will always be a part of who you are.

As for boys. I know. You trust everyone and no-one. And the ones that do seem genuine still make you twitchy. What you may be surprised to hear is that most of them think it’s okay to behave the way they do. They don’t truly see how vulnerable you are because you’re so good at acting as if you are confident. But those couple that seem genuine are the real deal. I know you’re not ready, just let them down gently. And know that by the time you are me and writing this to yourself, you will have met the most amazing man who embodies all your hopes and ideals. So don’t give up on them, settle for nothing less, because he is in your future. I’m not telling you when in your future, though, because then you wouldn’t have the experiences which led you to him in the first place. But no… you’re not going to be a mad old cat lady!

And as for advice. Well, you already have the morals to carry you through. Not everyone is as honest or open as you are, you’ll find that out as you go along. But those that meet you and grow to love you as a friend will treasure you for who you are, so don’t feel as if you’re somehow weird or boring for being ‘good’! There will be ups and downs, but aren’t there always? Sometimes there’ll be more of one than the other. My strongest advice is to prepare yourself for anything without fretting, live every moment to treasure it later, and never assume anything about anyone, even those closest to you. Your strongest asset is yourself. There will be tough times, and you will find ways to get through them. If it helps… it is worth it. However bumpy the road gets, it is always truly worth it.

Lots of love and a big hug from me, xx

P.S. Don’t wear wobbly-heeled shoes. Ever. Even on a special occasion.

P.P.S. Trust me. It’s not good for our body. Just don’t do it, x

Pictorial beauty and magic moments

I’ve just been browsing some of the latest updates to flickr.com and I thought I’d share a couple with you as they are so beautiful.

This photo’ is of the sea at the shoreline, with the motion of the water blurred in movement to create a wonderful sense of looking at the world from a different point of view. The photographer, Rob Dickinson, has chosen to keep the seaweed in the foreground in focus, giving us viewers a sense of stillness despite the movement of the water. A pure moment in time.

To me it suggests almost a detached point of view. Not one where the detachment denotes a lack of emotional connection, but one where we detach from the distracting high frequency and pressingly urgent, humdrum mundanities of our day-to-day modern lives. It’s a depiction of one of those moments where you look up from your cup of tea, feel the breeze coming in through the open window and suddenly notice the birdsong behind the traffic noise. Those moments lift your soul. They remind you of the beauty in the world, and they refuel your inner self.

I love this pic’, thanks for sharing it, Rob.

The other photo’ that stood out as I browsed, was posted by Fabi Flores and it spoke to me in a very different way. This photo’ does not speak to me of the now, but of the lost past. Of childhood carefree days before we grew up and got serious. The sunlight is aged, nostalgic and beautiful. But the swing seat is empty. Those times are gone. Looking at this pic’ makes my heart swell in remembrance, but it is tinged with a sadness of what is an unregainable past. We have grown up, and yes we toil and fret, but we carry those warming memories with us like sparks at our centre that keep the fire burning.

And when we return our thoughts to reality, to the present day, we still have those beautiful detaching moments where we breathe in the world and smile over our steaming cuppas. Present-day life is not so bad. It’s all part of our journey, and the journey is scattered with glorious mini-moments to be noticed and savoured.

Thanks Rob and Fabi for sharing your pictures, x