World Tai Chi and QiGong Day

Every year the last Saturday in April is World Tai Chi and QiGong Day. I’ve been a Tai Chi student for just over a year, now, and I have every intention of continuing to learn for as long as I can. I’m not a stereotypical creaky grey-haired person, or a stereotypical young and fit martial-arty type. I’m blending the stereotypes as a young(ish) creaky person and cheering on any person of any age and any ability to give Tai Chi a whirl if they feel the urge!

Like so many people, I have turned to Tai Chi because my health won’t permit other types of exercise. And, like so many other Tai Chi-ers….. I wish I’d started learning it when I was younger!

Yes, Tai Chi is undeniably good for the older body. As we get older our bodies get a bit cranky and need our exercise to be in more appropriate forms and intensity. Tai Chi fits the bill, and research backs it up inexorably.

However, it is also a martial art, (have you seen Jet Li’s Tai Chi Master? ), and can be taken to levels beyond what you are aware of from general urban myth. My tutor combines it with Wushu, (that beautiful but exhausting form of martial arts you see spinning through the Eastern martial arts movies), to create beautiful and yet physically demanding forms. If she wore aaaaall her medals at once she’d probably be hidden from view, she’s that good! Tai Chi can be taken as far as you want to take it and, in my opinion, the further you take it the more interesting it gets!

But for us beginners, there is the standard form of 24 moves which we can learn. It is the form practiced throughout the world, but even as a beginner you don’t have to just stop there. You can if you want, of course. The point is that you learn as much as you want to and practice Tai Chi in the way that it makes you most happy. (And it does make us Tai Chi-ers happy)! But the 24 is not the be all and end all. I’m learning the Yang style 88 form at the moment, and loving it, (despite the crazily fast heart-rate and having to sit down half the time coz my blood pressure keeps trying to go for the fainty option). After the 88… I look forward to learning the 42 which includes moves from the various styles of Tai Chi, so I’ll be learning different ways of moving and varying the speed from a Tai-Chi-slow to a fighting-fast and back again. (There’s videos of the 24 form and 42 form on one of my earlier posts here). But I don’t expect to leave the previous forms behind. They all have their place and take different lengths of time to perform, and they all create greater understanding of the art whilst offering new directions to potter off in and learn more.

I love it…..can you tell?  ;-)

A rare non-wobbling moment caught on camera! (The kicks don’t have to be high ones, by the way, x)

As some of you will already know, I have been trawling the research journals for papers investigating the effects of Tai Chi on health. I wrote about it in my Tai Chi Glee post way back in February. I haven’t forgotten it, but my health, the writing challenge, my health, the lack of adequate tech’ and, er, the main problematic theme: my health, made it really slow going. So I’ve written a bit when I can, researched a bit when I can, and slowly got there over time. And as today is World Tai Chi and QiGong Day, it seemed the most appropriate day to upload it to the blog.

So here it is….the link to my info’ page about the Health Benefits of Tai Chi….just click here.

x

“Keep Calm and….”

The other day I promised one of my pals that I would post another link to a website where you can create your own stuff…

Today the inspiration is from good ole “stiff-upper-lip” Blighty-ness!

Back in 1939, after the outbreak of the first World War, the British Government decided that morale-boosting posters would be a positive addition to the British people’s mental resources. The most famous being the “Keep Calm and Carry On” poster, headed with the symbol of George VI’s crown.

Now, here’s the exciting bit….

There is a magical place where you can create your own versions of the poster!

I was mulling over what would be appropriate wording to relate it to my life and conditions. In the end, the first one that came to mind was the one that was truly ‘me’… When I don’t know something I go away and learn about it, whether it’s about my health or any other random interest. I spend lots of my sparse and infrequent on-the-planet-and-almost-upright time on the laptop hooked up to the ‘net. I have a hard-drive full of research papers and articles on CRPS, Dysautonomia, Tai Chi and various other, seemingly random, topics…

So this poster says the most about me, and makes me laugh at the truth of it….

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Bwahahaaa, it’s meeeee!

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But it’s far too much fun just to stop there, of course, so here’s a few more….

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And the most terrifying of all……

Tee hee

Of course a fat load of good I’d be in a fight…. “Can you come at me in slow mo’? I don’t do fast. Oh yes, and if you could just wait a few minutes, I’m feeling a bit lightheaded”. Yeeeaaah, I’m truly terrifying, me.

If you fancy inventing some of your own posters, then just pop over to this address….

http://www.keepcalm-o-matic.co.uk/

x

Conversations in the Outernet

I don’t really get the opportunity to see real 3D people in the ‘Outernet’. (Or ‘real life’ as most people probably know it)! I get the opportunity to talk to my gorgeous, beautiful friends thanks to the magical power of ‘being online’.

In the ‘real’ world I mostly just see my boyfriend, and our conversations usually involve:

(a) Me wittering on about what I’ve done today and what new information I’ve found out about my condition. Which results in his politely nodding and saying “mmm”, even though he doesn’t understand what on earth I’m on about coz I’ve gone into enthusiastic ‘expert patient’ mode! (Usually when he’s only just got home from work, too. He’s very good to me)!

(b) What we want to watch on TV when we finally get to chill out together…Me: “I don’t mind, babe, whatever you like”, Magic Dude: “I always choose. What would you like to watch?”, Me: “Oh, I don’t know. My brain’s not working now anyway, so just watch whatever you like!”. (I don’t intend to be exasperatingly indecisive)!

(c) Something so utterly random and completely made-up silliness that I laugh out loud but have no idea what we talked about afterwards because it was that random!

Or (d) practical planning of what we do when, what we’re going to have for dinner, how much physio’ time I have left to do anything in, and so on, right up to the end of the day when he says: “You look really tired. Bed?”, and I can’t help but nod in exhausted agreement! After all, I look and feel really tired every day!

Other than that I do occasionally have the good fortune to have a visitor pop in for tea, but mostly I see two groups of people: My Tai Chi group, and a lot of medical practitioners. There’s not much time for talking before and after Tai Chi, we’ve all got conditions we’re working around and so none of us can afford to loiter. But seeing medical practitioners is full of conversation. With me doing the explaining and them either not getting it, or them explaining to me what they do know to try to figure out if they can understand what is going on.

If only an apple a day made the doctor understand!

My most significant recent conversation like this was with the cardiologist who, as you’ll know if you saw my post the other day, basically presented me with the options of living life whilst permanently nearly fainting or… getting a pacemaker, (which would only help with some of the symptoms, anyway). This resulted in me hanging in there through the appointment, and then blubbing in the disabled loo before driving home. Sometimes it’s just a head and brick wall scenario!

Well, some good has come out of that conversation after all… At my request, I have been posted a copy of the cardiologist’s report that he had already sent to my doctor. And I have found that, for the first time, I actually have ‘autonomic dysfunction’ in writing. It has only been verbal for the past two years and that has made it difficult when talking to uninformed doctors who have so little knowledge about this area that they go back to square one and start doubting the original issues. *sigh* So this letter is a wonderful thing to receive as a result of a very important conversation.

I shall be scanning the letter into my computer and saving a copy on my hard-drive. It’s that important!

I showed the letter to the specialist respiratory physiotherapist to give her the update. And she said….”Oh, he’s only a GPSI..?” You what, now? I didn’t clock that bit! Everyone has been referring to him as ‘the cardiologist’, so I never thought any different, but it turns out that he is simply a ‘General Practioner with Special Interest’ in cardiology. Ahhh-haaaaaa, it all makes sense, now. No wonder he was interested and somewhat informed in my esoteric area of unwellness, and yet not actually trained in-depth to know how to actually treat the oddness. Okay. That makes more sense. But why send a patient with such a rare condition to a general doctor with no experience in treating it? It’s a mystery!

Conversations are great for the heart, for the soul, for creating an understanding and exchanging meanings, (assuming you’re not in a brain fog state at the time, of course!), but sometimes, just sometimes it’s the black and white type that does it.

Hooray for the ‘autonomic dysfunction’ in writing. I am so grateful that he went to the effort to do that.

And oh-ho, not actually a cardiologist. That explains why he had no other options to offer me.

Next on the to-do list: complete my summary of symptoms and quantifying the daily levels in the hope that my doctor understands the severity….then ask to see someone who actually knows how to treat this!

Ah, my work is never done!

x

My Gnomic adventure in pictures

After enforced writing and thinking downtime, I am back! I have spent several days in a malfunctioning state of being, hoping that my brain and body would recuperate so that I could get on with things again. I have even, (prepare to be shocked), ….attempted relaxing! (Gasp)!

I told my brain that it could chill out and watch ‘The A’Team’ and ‘Serenity’. But I still attempted to keep up with Facebook stuff, and got downhearted every time my brain fell over trying to read or reply to basic messages. I had some great advice on what foods to eat, found that I’d run out of both kale and cabbage and that I wasn’t safe to drive to the shop. But I did have cheese… so I had home-made spinach and ricotta cannelloni instead. (Not necessarily lots of the right kind of cheese, but it was very nice nonetheless). Oh, and a little bit of left-over easter-chocolate for afters! I guess I really need to look into the effects of various foodstuffs, but that’s a job for more viable thinky days.

When my brain eventually fancied some written words it was allowed to read some of Terry Pratchett and Neil Gaiman’s ‘Good Omens’!

To keep the legs working I attempted most of my useful do-stuff activities during my morning physio’ when I’ve been more capable, and then my second physio’ of each day involved vaguely wandering around to gently exercise my legs, (but otherwise being useless). I have been able to think a little more clearly over the last couple of days, although I had a major fainty-pukey day yesterday and was very grateful for the support from Magic Dude and my Tai Chi teacher. Despite that and the endless headaches, slowly but surely I have found it less difficult to read and write as the days have gone by.

So I’m gradually working my way back to my version of ‘normality’!

The pictorial silliness occurred a couple of days ago. Magic Dude asked whether I would prefer to do something different with my second physio’ and despite usually being firmly of the “I don’t mind” ilk, I actually had a definite request. Those of you who have ‘liked’ my Facebook page will already know that I went out with camera, tripod, helpful photographer and a bright red gnome-hat to create some Gnomic pictures for the blog! I only had to sit still and look at the view, so my body could handle it. And I had a bit of a laugh at the thought of how daft we must’ve looked to the local dog-walkers!

The feedback on Facebook was fun and cheering. So I’m now uploading the pic’s to the blog to see what you think of the results of my little adventure!

I’ve got a feeling that there may be more of these in the future. I may even look to acquire a red waistcoat to add to the Gnomic silliness.

Let me know what you think of the banner photo’ and profile pic’. I’d love to know your thoughts on these.

Banner photo'

Profile pic'

And here’s another piccie that I love, (although it does look like I’ve got a hand growing out of my face)!

Elle and the Auto Gnome

So that’s what I got up to during my writing hiatus. I hope that my interim pictorial silliness has given you a bit of a chuckle. I will get back to the WEGO writing Challenge, but I’m still struggling to write and anyway, I wanted to share these piccies with you and ask you what you think of them!

Love from me, x

Writing Challenge takes down health-blogger in just 7 days!

I’ve just hit that proverbial ‘wall’. I cannot continue to write a blog post every day, even for such a good cause as the WEGO Health Activist Writers’ Month Challenge! I am not just tired, not just fatigued, but exhausted to the point of zombification, (without the hankering for brains).

 

I did not know that it would hit me this way. I expected pain, migraines, general tiredness and brain-drain, but not this. I’ve been reduced to a pseudo-zombie state where I am so utterly exhausted that it takes indescribable effort to move a limb, move my head, or attempt to read a simple research abstract online. My eyes are open, the lids are not drooping too much, (although the insomnia can’t have helped matters), I am just so exhausted that I am struggling to function at all.

I am writing this after a relaxing bath, a small bag of chocolate buttons and an actual caffeinated tea. None of which have really helped, so I thought I’d write this before I keel over into loss-of-brain mode again!

I am not giving up. I will continue to keep note of the WEGO challenges and I will get there…eventually. It will just have to be a lot less intense. I don’t do giving up, so you can imagine the physical state that I have to be in to get to the stage of writing this! To have to compromise the underlying rules of ‘every day for 30 days’, is a big deal for me. But there is no way I can keep this pace up. Besides, my lovely blog followers must be getting tired out with all this reading!

I’ve got a cuppla posts almost ready to roll, so it’ll look like I’m still on form for a couple of days, but after that it’ll settle down to a more sensible pace again. My body has said ‘no’ and said it so severely that, even with my level of determination, I cannot over-rule this one!

Not only am I blogging like a woman possessed, but I also have the research project to prep’ – I should be multi-tasking at the moment and haven’t been able to do so. I always give myself too much to do in the sparse amount of do-stuff time I have each day. But it’s one thing to feel useful, and quite another to run myself into the ground! I frustratingly must take heed and make a change. Perhaps it is fortunate that I am in no fit state to kick up much of a fuss about it.

Blog-Post-Every-Day-Challenge Service is being suspended, and Normal Service is being resumed!

Lots of love from your determined dyssie,  x

Temporary cyborg and wearer of an invisible (purple) cape

I must be turning into my very own special version of old-young-person…. coz there I was a few weeks ago, sitting in my third cardiology appointment complete with thin hospital fleece, and whilst I was aware of my body temperature yo-yo-ing between shivering cold and a half-hearted attempt at self-combustion, my brain was otherwise occupied and volunteered a suggestion….. ‘oooh, this fleece would be really handy for covering the winter veg’’!

<facepalm>

Gardening thoughts? In a cardio’ appointment? Ah well, I do use distraction as a handy tool for coping with my conditions and their symptoms. I guess it must’ve become a seriously ingrained habit!

So yes, … I finally got to see a cardiologist, and my near-fainting issues all made the same sense to him as they did to me. Huzzah!

He even knew what CRPS was, and how it can sometimes result in general autonomic dysfunction. It’s such a relief to not have to explain my medical condition for once. That’s the trouble with having a comparatively rare condition, you usually end up training the doc’s, and they’re not always too happy about the knowledge switcheroo!

Yes, the near-fainting persists. As does the generally increased, but crazily variable heart-rate. This coupled with my existing autonomic dysfunction and my long list of resulting varied symptoms, suggests that it’s ‘just’ my ANS being spectacularly inappropriate! As usual!

I say ‘just’. Obviously it’s actually quite bad as there’s not much in the way of treatment. But, as I see it, it’s nice to hear normal things about my body these days! Normal size and shape of heart, for example. Always nice to find something that’s being what it should be. Even if its behaviour is wrong, courtesy of the weird instructions being sent because I have a neurological skew towards biological mayhem!

So I started to write this whilst wearing another ECG. My fourth home-ECG in the last few months. There were wires sprouting out all over the place. I probably looked like some kind of cyborg. And I probably should have practiced some robotic beepy noises for the occasion. 

(To be read in your best Dalek voice….) “Exteeerminaaaate!”?

The cardiologist’s plan was that the three-day ECG would (hopefully) show a degree of heart-rate variability which would back-up the theory that these symptoms are also because of my autonomic dysfunction. It would be easier to prove if we could record an arrhythmic heart moment, but they are random and I seem to be in a quiet phase on that front at the moment.

During those three days, though, my heart was being quite calm. Continuous light-headedness as usual, of course, but not any heart-rate variability that was obvious to me. Perhaps sitting at the laptop or having a calming Tai Chi lesson would not be that helpful in trying to demonstrate symptoms of heart-rate variability! I made sure I listened to Jared Leto’s dulcet tones on the drive home from Tai Chi, though, so surely listening to that voice would have raised the heart-rate a wee bit?!

Oh?… Jared looks a bit surprised to be in a blog about dysautonomia!
(Image: free-extras.com)

It’s such a good feeling when I get to see a doctor who already knows about my condition. It’s a whole conversation that I just don’t have to have. When I visit my general physician, he doesn’t say much. He just sits and looks at me. He listens to what I say, but he doesn’t usually enlighten me about what he’s thinking at all.

It’s tricky not having a two-way conversation with your medical first point of contact. You never know where you are or what is really going on. My doc’ doesn’t know much about CRPS or dysautonomia simply because he’s not specialist trained.

Poor confused Doc’!

Neither am I of course, not officially. But after more than 12 years with CRPS I wasn’t surprised to be told by the specialist pain-management doc’ a few months ago that she was adding “expert patient” to my notes. It doesn’t seem to have made any difference, but it was a nice compliment!

As I write this now, I am no longer part-cyborg. And the ECG results came through as not showing enough heart-rate variability to officially pin the symptoms on the dys’. Not enough Jared Leto, I should think.

When I went to see the cardio’ again, (because I’m now getting near-faint symptoms after just ten minutes of activity and in fact all the symptoms are worsening at a very scary rate), I was sooo nervous! Not about the appointment, but about the likely unhelpful outcome.

I’ve been advised that there are no specialists in autonomic dysfunction, and that I’ll have to go and see other specialists about each symptom, starting with the most problematic. So… gastro-doc’ next then, as the continuous near-fainting and permanent nausea are the ones I’m fighting hardest to get something done about. The neurologist will have to be a close third because the varying loss of vocabulary and basic lack of comprehension generally is causing major problems at times. (Yes, I know I probably sound fine on here but I write this when I happen to be more able, and I re-read for errors about a zillion times before posting)!

By the way, he also advised that the array of other specialists that I should see, will also not know how to treat me! I ask you….what is the point? Send me to a specialist who does know, then. Surely that would be the next logical step? Bit of a waste of everyone’s time otherwise.

Strangely, he later added that there are no autonomic dysfunction specialists in this part of the country. So they do exist then? I am confused! If I lived somewhere else would I get treated?

I found out some more info’ about my ECG results. It turns out that there actually was heart-rate variability demonstrated. A normal heart-rate for an adult is 60-100 beats per minute, some online info’ refers to an average of about 72 beats per minute which probably varies with age. My average was consistently 70 across all three days, cool, eh? Um, not exactly! It may be a good average, but my heart-rates throughout each day were actually ranging wildly. It was pretty much the same each day, so as an example: on one day I ranged all over the shop from 34 to 154bpm! That’s not normal! Especially during quiet, chill-out days.

And this is where my glee at finding a specialist that knows about my condition ended. It turns out that there are people that know of, and people that actually know how! He knows of CRPS and some dys’ conditions like POTS. But He doesn’t have any experience in treating them. He does not know exactly why I am near-fainting all the time. I get the low heart-rate (vaso-vagal) near-fainting, but also the high heart-rate near-fainting that suggests something like the blood vessels not constricting in my legs, but he doesn’t really know. And he doesn’t appear to know how to find out, either. Which leaves me in a bit of a pickle, because you can’t treat something when you don’t know what it is you’re treating.

He’s asked for a fainting test, though. Although he says he doesn’t know if ‘they’ will consent to run the test on me as I haven’t actually passed out yet!

You don’t have to actually pass out to be diagnosed with POTS. I am puzzled as to why he thinks fainting is important in dysautonomia, but that near-fainting is not.

We already know that I have dysautonomia, albeit only through verbal discussion. I have no official diagnosis letter to wave at doctors. And a key diagnostic tool for dysautonomic stuff is this fainting test he’s referred me for. It’s known as the ‘tilt table test’. It basically entails monitoring the heart-rate while you’re at rest lying on a table, to which you are gently affixed(!), then the table is raised so that you’re nearly upright and the heart-rate continues to be monitored at intervals for a fairly long period, (I’ve been told that the appointments last about an hour).

The Tilt Table Test

Fair enough. A positive outcome from a tilt test would go on my notes and give future doc’s a medical starting point instead of going through the usual time-wasting rigmarole of doubt and confusion! So it could be helpful. Although bearing in mind that even 70% of POTS patients come up with a negative tilt table test, a negative outcome could actually be more detrimental when in the hands of the untrained and uninformed.

What I was not expecting was to be told that the reason for requesting a tilt test was to see whether I should have a pacemaker fitted……..*gulp*. Pacemaker???? At my age?? Egads!

This is his reasoning….he says he only knows of two treatments:

1)      Heart medications. Which affect the heart-rate, but as my heart rate varies so much… it can’t be medicated for. As soon as a med kicks in to solve one heart-rate problem, my heart will hippity-hop to a different pattern of behaviour, thus requiring different meds before the other ones have even worn off. So meds like beta-blockers and such like are not viable for me.

2)      Pacemaker! He says my ONLY option is therefore a pacemaker. It would be set to kick in if my heart-rate drops too low. But it would not solve any of the other problems and so would not be of much use overall. As a CRPS patient I need to avoid all invasive procedures unless absolutely necessary. And this would mean multiple surgeries as each pacemaker wears out over the years.

So that’s the choice that I’ve been given. No meds. Just…pacemaker…or continuous and worsening near-fainting.

He expected to wave me off to live my life despite continuously nearly fainting all day every day. Why did he not suspect that this may not be very appealing to me? Mysterious minds of specialists. ‘Can’t fix it, so it won’t get fixed, that’s just the way it is….byeeeee, have a nice life’. Really?? Yikes! I know of some meds that could usually be discussed at that point, but he doesn’t usually treat people like me so he just doesn’t know. In his view it’s simply pacemaker or nothing.

So is that it, then? There is no help?

I know that there isn’t much that can be done, but after doing lots of research and watching the Dysautonomia Information Network’s fabulously informative video about POTS, (a primary form of dysautonomia which has overlaps with my own dys’ symptoms), I was under the apparent misapprehension that some meds could at least be trialled with each patient to have a go at helping to reduce symptoms. Things like increasing sodium uptake to improve blood vessel constriction in the legs, or increasing serotonin in the brain to even out heart-rate, and so on. But the cardiologist is only specialist in his own area. So unless I can find someone out there by my own random and untrained searching of the health service, then I will only get to see specialist doctors who are not trained in the dys’ stuff.

Suffice to say that it was not a jolly experience that day. I was basically told that my worsening symptoms, that are preventing me from being on the planet and from doing-stuff/making-sense-of-stuff moooore and moooore of the time, are actually…. the New Me.

My view of the world is rather like this a vast percentage of the time. My eyes don’t necessarily see it like this, it gets experienced like this.

So yes, I felt a few tears trickle down my face. Sometimes even the strongest and most determined cannot avoid a chink appearing in their armour once in a while! I kept talking, though. It’s not often I get the chance to see someone who has any clue at all about my condition, so I wasn’t going away without asking my questions first and being gracious and appreciative for his time. Despite the emotions wibbling on the inside!

Then I left the building circuitously, (via the disabled loo), and blew my nose as if I had a severe addiction to tissue and there was an international snot shortage that I was hastening to amend. There, sorted. No more snot shortage in the modern world! Job done.

Right. Deep breath. I had to drive home safely and get on with my day, and my life. Stuff to do, life to be lived. Check the bathroom mirror – how bad do I look after the torrents have passed?

Well, it had resulted in a comedy pink face, but my eyes looked all twinkly so maybe it’s a new look to consider?!

So with my imaginary (purple) cape swirling around me, I unlocked the door and stepped back out into the world to continue to be a version of me.

Okay, so the cardiologist wasn’t so helpful after all. So before I ask about a gastro-doc, and a neuro-dude, I’d better rethink the vascular issues. Hmmm…time to start searching for an Electrophysiologist, apparently!

Gnomes Bane. Daaahn-da-da-daaaaahn! My Clark Kent version of me was having a wobbly day. But that was that, no more crying. The answer was a nice cuppa. Isn’t it always? And maybe some commiseration chocolate. Oh, and this post, of course.

x

Newer post on autonomic tests (including TTT) here.

5 Haikus…..just because!

For a bit of fun!

Well, it’s Day 6 of the Health Activist Writers’ Challenge and boy, my brain is tired! Writing every day is certainly a challenge when you’re battling through the day with health conditions already! I enjoy the process of writing and creating, but I’m grateful for some less emotional-writing days. Today’s suggestion is a fun one, there’s a few more ones like this coming up. I couldn’t resist doing a bit of research into the topic, though. (Of course)! x

I’ve been delving (briefly) into the world of Haikus.

Haikus are a type of Japanese poetry that date back to the end of the nineteenth century. In the western world haikus are simply three lines that consist of 5 syllables, 7 syllables and 5 syllables, respectively. They don’t have to rhyme, and their simple format is intended to add something intangible to the experience of the poetry.

The Japanese language is so different to English that there is some argument that to attempt to achieve a similar effect the 5-7-5 syllable format should be reduced to a 3-5-3 format, which gives you some idea of how brief an entity they can be.

During a bout of insomnia I came up with the following daftness. (It was really good at getting my brain to switch off and let me sleep, too! Who needs to count sheep when you can count syllables?)!

.

I was ‘normal’ once,

Eek! Dysautonomia,

Now unusual.

I started this blog,

To help make a difference,

But it helped me, too.

I love Magic Dude,

He makes me smile and chortle,

Worth his weight in tea.

Sunshine makes me feel

Like the burden lifts awhile,

The warmth eases pain.

I love to drink tea,

I’d drink it all the day through,

If my legs allowed.

.

And speaking of tea….

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

Why I also live in Cyberspace

I write, but I’m not trained as a writer. I have done quite a bit of studying, so I’ve written lots of essays in my time. But they were made up of lengthy, waffly sentences lavishly scattered with far too many commas. I struggled to be concise. I did not have the knack of clearly stating what I was trying to say. I’ve never been a writer, just someone who wrote as a part of my journey through education.

Despite the blogging, I still don’t consider myself to be a writer. I’m fairly new to the blogging world. If anything, after all the information I’ve sought out about my health, I’m a researcher these days. Although the books I’ve read that prepare for post-grad’ training clearly state that if you’re intending to study for a masters degree… you have to become a writer.  *gulp* You what?

When my health first took a downward turn I was unaware of where that road would lead me. I was waiting for ‘my legs to get better’, so that I could carry on with my life as I had planned it. Albeit, in my apologetic, I’m-not-worthy kinda way. I didn’t believe in myself or my skills. Whenever I was found to be good at something I would play it down. I’m a team player in the extreme. I’ve never been good at receiving praise for doing well, because I always felt for the people I had inadvertently done better than, and how they might be feeling. I didn’t like the idea that I had been the accidental catalyst for them to feel less positive about themselves. So I pretty much took to hiding my skills.

And yes, I know I’m a wally!

No-one should have to hide, we all have our own skills and value, and it’s daft to waste them. We don’t have to be the best at something to make a difference. You never know, once you try your hand at something you may discover skills you never knew you had, and the more you practice, the more you improve…the more of a difference you can make. It doesn’t have to be about changing the outside world, it can be about making a difference to you, to your life and how you feel about yourself.

Try something that warms your heart.

I write about my experiences because for more than 12 years I have lived with a condition that I’ve learnt so much about…by myself. And each time I learnt something new I would shake my fists at the world and ask the universe why on earth no doctor ever told me these things. After all, I’ve learnt the kind of crucial information that informs me how I can live around the condition wherever possible, how to deal with un-fixable symptoms, and how seemingly random weird-shit actually does make sense within the context of what’s gone wrong inside my body. It turns out that no doctor told me because they didn’t know, either. The subject is just too unusual to be included in their general training. So you won’t be surprised to hear that I found out that a lot of fellow patients were in the same boat, and that made me very peeved indeed. All those people struggling to make sense of their own health issues with no training, no information and no support. Grrrr. Somebody needed to do something.

A few of my friends spent years trying to convince me to write a book, but I was sure that they were massively overestimating my skills. I’m not a writer, and ‘expert patient’ didn’t sound like a viable premise upon which to write about my experiences. Years of pain, and isolation from the world of work and ‘normal’ types of responsibility, had somehow reduced me to a nobody even inside my own head.

One of my friends, (hello NY bud’, you know who you are – thank-you), came over for a visit and suggested I start a blog, and after a year of faffing and questioning whether anyone would ever want to read it, I finally acquired a piece of Cyberspace for myself. Initially I summarised some research in simplified form to post as a reference for my fellow patients, because that’s what drove me to start it in the first place. Including a list of where I got the information from, so that people could wave the research papers at their own doctors if the urge took them to do so. I can’t change the world, but I can do my little bit.

Since loitering in Cyberspace, I have met other like-minded individuals, some of whom have the most amazing skills and knowledge that they kindly share. Some have set up groups, some raise funds for research, some disseminate existing and brand new research, some are fellow bloggers. Between us, perhaps we can slowly and incrementally bring some awareness to the wider world to enable quicker diagnosis, more appropriate treatment and better support for sufferers. We are doing what we can.

Here we are, all over the world but in contact at the click of a button. Magic!

Starting something new like this sets you off on a journey, but you never know quite where it’s going to take you along the way. Creating the blog meant that I started to write about my experiences. I still have a list of things I want to write about in a little notebook next to my bed. Topics which I feel were of major importance on my journey. I will write about them eventually. I’ve found it’s hard to write about something that I am still feeling emotional about. My faulty ANS makes my brain function less efficiently when under stress and particularly when I’m feeling emotional. So I write about what is clearest in my brain at the time. And the act of writing has effected some changes….

I have found that it is a wonderful process through which I now evaluate my days and experiences. I sit at the laptop and sift out the boring and the negative. I find the ups in the same places that I always did, but now the process of defining them actually amplifies the ‘up’. The silliness, the laugh-out-loud moments, the beautiful reality of our raw strong selves. The process of writing appears to have highlighted my honesty that is, surprisingly, not negative despite my circumstances. Perhaps it has just shown me what my friends have been trying to tell me.

I have found writing to be incredibly uplifting and very liberating. I am ‘me’, as I have always been, but I am no longer just ‘me’ to myself and my friends whilst remaining hidden behind a curtain of pain and dys’ behaviour tendencies to everyone else. Instead I am openly me. There’s plenty of research on the positive effects of expressive writing. (I’ve got a whole load of them saved on my hard-drive)! But nothing compares to giving it a whirl and finding out for yourself, x

Don’t let that lightbulb moment slip away, follow your inspiration.

I write here because I want to do what I can. If one person finds a bit of basic info’ and a research link that they can use, or feels a little less alone in their own symptomatic world, or gains an insight into living with a disability and still finding the positives, takes in the ice and vitamin C messages to help them avoid developing CRPS, or just has a chuckle at the silliness, then it is worth it. So very worth it. Each message of positive feedback that I receive causes a rush of emotion, it touches my heart.

I am only me, and I feel so small and frustrated at times, but then I’ll get a message from someone half-way around the world telling me that they liked what I wrote and I feel a bit bigger again. Of more value.

I’m still no writer. I use slang words, made-up words, start sentences with ‘and’ and ‘but’, and I still have a bag of spare commas to scatter about the place. But this is not a place for perfect writing. It is a place for honesty, for ‘me’-ness, for humour and for shared appreciation of a nice-cup-of-tea.

My blog is one of the two major things I have begun this year. The other is a piece of research that I hope will help to get patients’ voices heard. I am a developing researcher, who also writes, I know my place!

x

What superpower would I choose?

Hang on, what am I thinking? After all, I am ….dahn-da-da-daaaaah…..Gnomes Bane…..!

My superpowers include (nearly) endless patience, powers of remaining upright using messages from my Tai-Chi-honed leg muscles (when my head tells me that I should be falling over), very high levels of pain tolerance, and an almost unshakeable determination to keep going no…matter…what….(gritted teeth)!

Gnomes Bane (chortle)

What? They’re not actually superpowers?

Okay, okay. Let me think. Er, we-eeell,…. I do have a mutant extra set of wisdom teeth! (Not all of which have yet completed their attempts to push their way through the other teeth that are sat right in their way). I don’t know what extra wisdom teeth would enable me to do if I was an X-Man, (er, X-Woman? X-Person?), though. I’m not currently aware of any super-wisdom effects. Although I am still fighting to think and write through bemusing brain fog, so…maybe?!

So, if I could have a ‘proper’ superhero power, what would I have? I can’t help but automatically opt for the self-healing one out of sheer necessity, really. But that’s so disappointing because it feels like I’ve had my superpower choice taken away from me. Everyone else would be wishing for an actual superpower and I would be wishing for something to enable me to function, which has the devastating (though arguable) side effect of also giving me life beyond all the people that I love. I don’t think that even the power of self-healing cuts the mustard in that case. Maybe all of us spoonies could wish ourselves well, and then spend our newly extended lives hanging out together and getting wise? (‘cept, of course, I’d have a headstart on that one, what with my mutant teeth and all)!

If I could have completely free rein, I think I’d go for telekinesis. That covers loads of superpowers in one. I wouldn’t just be able to move metal, or water, or rocks. I could manipulate any material….. Just think how handy that would be if I’ve locked myself out. I could just make the lock open. I could carry the shopping with ease. I could wash the dishes from a distance whilst I put my legs up to rest. Hell, I could float myself about between physio’s and save myself the legs pain. I could even float myself about whilst I’m horizontal so that I don’t have the near-faints! (I love the mental image that conjures up)!

No longer would I be flagged as a lone, disabled woman if I have to phone for car breakdown service. Wheel needs changing? No problem….(screws up face and points a claw-shaped hand in the right direction)….there…sorted. And off I trundle. Wait a minute….I wouldn’t neeeed a car!

Yep, telekinesis would be cool. I wouldn’t be ‘normal’ as such. But I could potter round doing normal things, albeit in very unusual ways. The locals would have to get used to me floating horizontally round the supermarket. But seeing as I could be so helpful to them, perhaps they wouldn’t mind too much! And if they’re all busy checking the saleable goods by looking through the packaging, being part crocodile, and bursting into flames, I don’t think anyone would notice me floating surreptitiously by with a little smile upon my face, anyway.

I’ll get the cape ironed. I like this idea!

x