Yes I still exist (honest guv’)

Imagine my surprise when I realised I hadn’t written a blog post since the end of last year! Lawks! I’ve been writing drafts when I can but poor ole Betsy the laptop has usually (always) got too many browser tabs open to cope that well! How is it possible that time passes by so quickly these days?!

I have been posting on the Facebook page though of course. Just never seemed to get to complete a blog post. The main reason has been lack of Brain. It pops in now and again but it doesn’t hang around as long as it used to. So I realise I need to change my way of writing to accommodate this change because mostly it’s resulted in me not writing. And as writing has become a love of mine I have been getting twitchy!

As I’m in the UK I was initially dealing with the tail-end of the continuing coldness through the Winter. Always a toughie getting through to the Spring, eh? Pain levels are up, natural vitamin D intake is down, relentlessness is the name of the game and by the end of Winter (well deserving of it’s capital W) we are begging and pleading the weather to bring Spring to us so that we can start recovering.

Winter was actually pretty mild here, but that just means that I wasn’t at quite such an extreme of my wits end, y’know? Winter is *always* hard. Springtime rocks!

I’ve been having some more health issues and I’ll write more about that in due course, but initially it appeared like it was a crazy-arsed allergic reaction to anything / nothing / everything which lasted all the time / 4 random minutes at a time / stopped for a few hours then came back with a vengeance. It was pretty weird. And yes it became apparent that it was so bizarre that it was reminiscent of my respiration issues a few years ago, so I knew it was a systemic overload which had to be stopped. Hence.. more on that in a separate post.

In March I said “yes” to a concert because I figured how could I not? I mean, it was in Winchester Cathedral, maaan! Beautiful! I didn’t realise just how cold it would get in there or that I should’ve dressed for the outdoors to better manage my pain levels, but fortunately they had some doghouse sized radiators to cuddle up to! So yeah, I went and saw Anathema perform acoustically in a gorgeous cathedral. It was stunning. Truly fabulous.

There are a few cathedrals around the UK who raise some of their funds through events like this so if you get the chance… dress warm, take a cushion if you need one, and because it’s acoustic it’s not like you’re gonna get your head blown off by mega-speakers so the volume is more compatible with sensitive ears (though if you’re unsure I can recommend the noise-reduction earplugs as they reduce the volume without muffling the sound).

Winchester Cathedral acoustic concert, Anathema

How stunning is this?!

 

I’ve also had the wonderful experience of two fellow CRPSers travelling from their home countries to come and visit me in real-live-3D, wow! That will also be a separate post because it was so fabulous 😀

Two of my friends got married and Magic Dude and I attended the sci-fi wedding in Star Wars fancy dress. Which I made with my own fair hands, I might add! My sewing machine and I are no longer nemeses, we have made friends and now I wish I had more time during which I am more functional to make some clothes. I now have a new creative project with the sewing machine which I’ll post about soon, too.

And for anyone wondering… I am dressed as Jareal (after the make-up has come off and been re-applied a gazillion times X-) ) who I found out about by researching the comic characters, and Magic Dude is dressed as Plo Koon who was briefly in one of the prequels (very briefly – when asked about his choice of wedding costume he said something like “you see him in one of the spaceships for a moment and then he dies”).

And of course that same month we had the UK government election. Voters were at a loss who to opt for if they even voted at all, many didn’t. The ‘majority’ on our ‘first past the post’ system was a shock. The majority means the party who got the most votes, even though the people who voted for them are actually in the minority of the voting population. Even weirder, our system is set up for the main parties and to keep smaller parties at bay. So this means that votes for the Conservatives adds up to more MPs from their party than exactly the same number of votes would get for another party. I know. Don’t ask. It’s so out of date. Anyway the shock factor was massive. No-one expected the same government to be voted in again. Not even the government peeps themselves! Many of my disabled friends were in tears at the news – welfare cuts have been horrific here with the poorest and most vulnerable getting hit multiple times through different cuts. The new welfare ‘assessment’ process is causing mental health issues to the extent that there have been suicides as a result. Before getting re-elected the government promised a further £12billion welfare cuts so you can see why so many people were in tears. I seemed to last a while in shock until Magic Dude’s Dad said something blinkered and I burst into sobbing and couldn’t stop for some time. The UN is now running a second investigation into the state of human rights in the UK to expand on their earlier investigative report.

So yeah, now I’m an activist. As it turns out. Not just a health activist any more, but an activist for the poor and vulnerable generally. I can’t do much in my state of ill-health but there are petitions I can sign, ideas I can bounce, people I can help. Being chronically ill isn’t going to stop me from caring about others and doing what I can to help reduce the additional shitstorms coming their way. Takes up quite a bit of Brain Time of course, another reason I have been so absent from the blogging as usually May is the time of year when I would begin to manage to write a bit more.

So anyway that’s enough for the body to have to handle whilst still working through the months slowly recovering from Winter, right?

But I’ve also been doing my usual full-on overdoing it for one day in April and one day in June at Tai Chi tournaments. As you know it takes months for me to recover from Winter and weeks to recover from each tournament, so the overlap of tournament with Not Recovered From Winter Yet is substantial. But I do it because I am so limited and restricted every day that pushing myself for two days per year feels worth it because although the aftermath is horrific the memories last far longer. 🙂

The April tournament this year was not the usual nationals in Oxford but my first ever Europeans. (The Europeans were originally going to be held in Latvia and so this was a last minute alternative and much more viable for me to get to).

I performed the Sun Style 73 form which is not a flowery style so I have to show my understanding and skill levels in different subtle ways, so that was my challenge. I also performed the 42 form (a tournament form incorporating 5 different styles of Tai Chi) so performing two different things at one tournament was also my challenge. I was a bit awed that my teacher had put me in the advanced/open section whilst I am still officially at intermediate level, I guess that was also my challenge. Hey wait a minute? How many challenges am I fool enough to take on at once here?!

I was amazed that I ended up with a silver for my 42 form (with two lovely ladies from the Netherlands either side of me with gold and bronze) and a good score for my first ever tournament performance of Sun. But more fabulous was the fact that this was the first time that I’d been part of a larger team. We’ve only had a maximum of 3 of us there before, but this time we had a whole gaggle of us. Some in beginner, some in intermediate and some in the over 55s. Everybody in the team was supportive and encouraging to each other, and lots of fellow Tai Chi-ers there were positive towards us too. In fact I was so pleased to find out that my teacher had been told that her team were notable for their friendliness and positive attitudes. What a fabulous endorsement for her first event managing a larger team. 😀

Tai Chi, 2015, European silver

The next day I met up with my lovely teammate who also has chronic pain and was staying in the same hotel. We have travelled our Tai Chi paths alongside each other these past four-ish years and we have cheered on each other’s progression with such joy because it’s one heck of an achievement in the face of our respective health issues. I hobbled from bed to lift, and from lift to comfy chair in the hotel lobby. I sat in one chair with my feet up on a second, had my hot water bottle under my legs, blanket over the top, painkillers in my bag and he had been his usual sweetheart self and got the coffees before I got there. Several hours later we were still there nattering away. Movement was not very viable for either of us and it was great to be company for each other through the pain levels.

My lovely Magic Dude turned up later with the wheelchair so that he could get me out of the hotel room the following day. We went into Oxford town and I went camera crazy as I always do when I actually get out somewhere! It was really lovely to get to see the city this year. That wheelchair makes such a difference! 😀

Oxford, bicycles.jpg

Pictures obviously included bicycles (and many many grotesques and gargoyles on the old buildings)….

Oxford, Bodleian library

…the inspiration for Hogwarts main school hall in the films (Bodleian Library)…

Oxford, street pianist

…and a pianist on wheels who was super-prepared for any sudden change in the weather! Totally normal, nuthin to see here! (Actually his piano playing was gorgeous).

The weeks between the Europeans and the June Nationals whizzed by and I was not in great shape healthwise (starting the tournament day with the screaming ouchies in my left leg at a mean 8.5/10, boo!) but I managed to get the pain levels down a bit to perform in Sun Style at my intermediate level and got a good score considering I was racing through the 5-6 minute form to complete it within the required 4 minutes *and* I added in an extra move by accident, too! X-) Being able to get a decent score with Sun style was my aim. And extra wonderful was that my teammate (yes, that same friend) got the exact same score for his multiple-style 42 form and so we ended up on the podium together with joint silver, wow! I can’t tell you how awesome it felt to be standing there with my friend sharing that achievement after coming such a long way together in our journey to help our health situations. There really are no words to describe the singing glee in the soul but it was flipping wonderful! He’s put in phenomenal work to get where he is today using both physical and psychological tools to find the best pathway round the health stuff. If anyone deserved to be standing on that podium it was him, and I found myself standing on the same podium with him which felt so perfect that I wasn’t on a different podium or even a different level – we were on there together. Go Team!

I also entered the advanced/open section with the 42 form, managed to fluff it up in amazing style, made it look like it was meant to be that short honest guv’, and ended my performance somewhat (a lot) earlier than I should have, har! A good score considering the extent of my very silly error, and some wonderfully positive words from head judge Faye Yip telling me to come back next year because I have “potential”, yay!

Oh and no wonder my body has been so screwed because the classes that I use for physio’ include adaptive Kung Fu in which I have got my red sash and first level brown sash this year too. I’m not entirely sure how I managed to achieve those! Although the brown grading was during the heatwave and my legs were glad of it even if my nervous system wasn’t! My body needs more tiiiiiime, man!

And yet I posted on my personal Fbk wall the other day that it would be nice not to have to deal with people telling me that I am “lucky” to “not have to work” / “get to stay at home all day” because I get those sort of comments as a result of how people see me when I am out of the house i.e. looking ‘normal’ because I am doing my physio’. If only they could see me the rest of the day eh? Needing a wee and not being able to get to the loo in the adjacent room, wanting a cuppa and having to wait several hours til Magic Dude gets home and can make me one. Ah well, people just don’t get it eh?! 😛

And then we were getting the house ready to put up for sale. It sold at the end of July and we’ve been searching for our new home ever since. Not sure how much longer our buyers will hang in there but if they pull out it’ll sell straight away again. The market here at the moment for the main price bracket of £120-210k (your basic 2-3 bed homes with the usual squished space that we have in UK houses) is basically at about 15 buyers per house. Apparently we wouldn’t have the same extent of trouble if we had £210-250k. Oh if only eh?! Har, dream on!

We need some more space y’see. I moved into his one bedroom place and so nearly everything I own has been in the loft for the last 5 years. If one of us wants to do something creative there’s no space to set it up and leave it so most of my physio’ time is taken up with getting everything out and setting it up and then putting it all away again afterwards which doesn’t leave much time for whatever the activity in the middle was supposed to be (I want to get painting again). So yes we need a little more space but also….an enclosed garden. Currently we only have an open outdoor space between the house and the pavement out the front. Apart from how nice it would be to have some private space the main reason is (dahn-da-da-daaaaah…) we wanna get a dog! But the housing market is slowing down for chrimble so I’m expecting our buyers to pull out sometime soonish and that we’ll be re-selling in January when potential new homes start to show up in greater numbers.

So with fewer house viewings taking up my physio’s I finally have some time again, wheeee! Except for how that creative project I mentioned will now take over any available physio’ time. I look forward to sharing that when all the material has arrived. 🙂

Anyway, now you know I’m still here.

Phew! That was a heck of a catch-up!

Loves xx

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Ev’rybody was Kung Fu fightiiiing

So… I have news…!

As many of you will know I’ve been spending some of my crucial physio’ time learning Tai Chi for the past couple of years. I’m still going, that’s not the news, no change there. Although, news-wise, I’ve just learnt the final moves to the Sun Style 73 form, and I’m also learning the Yang Style Sword 16 form. Wheeeeee! Love it!

My teacher and her business partner have various martial arts classes taught at their club, not just Tai Chi. Of course most martial arts are fast and waaaay beyond me in terms of fitness and health requirements. Classes include Kickboxing, Muay Thai and Mixed Martial Arts.

But a while ago they started a new class which massively overlaps with Tai Chi. It’s not focused on fitness, but instead on technical aspects. It’s a mix of Chinese Boxing with Kung Fu. After some discussion with my teacher I decided to give it a whirl! *gasp* Which basically means that I get to apply my Tai Chi knowledge, learn some new moves, feel safer for knowing some self defence and it allows me to push my physio’ within a safe environment.

Many years ago the first physiotherapist I saw at a hospital told me that I should be able to do anything within my physio’ time even if my pain levels then go up and I keel over later. Of course that was also the physiotherapist who decided by herself that my diagnosis from the national specialists was not actually true, so she worked on the assumption that I had a common or garden type of chronic pain rather than the multi-systemic reality of CRPS. *sigh* Don’t worry, her boss knew the score and I worked around her! But as I’ve worked at the physio’ pacing over the years I have found that I can do more during my physio’s on less symptomatic days as long as I stick very carefully to the time limit. I inevitably experience greater pain and symptoms post-physio’, but if I am consistent and don’t push it too much this actually helps to keep my pain levels from soaring as high as it used to overall. (Which, for a CRPSer, is pretty good)! As long as I spend the rest of the day resting and recuperating (which I have to after any physio’s anyway). Being trapped on the sofa on painkillers is my reality whatever activity I do during my physio’ time, so a fulfilling physio’ helps me cope with the recuperation time.

It helps enormously that my teacher has worked with me in Tai Chi for a couple of years… she knows me well enough to know that I push myself too hard sometimes and so she reels me in a bit! She also is pretty good at spotting when I’m having a symptomatic day, and knows when not to pick me up on certain types of errors because they’ll iron themselves out when I’m feeling better. Although she does not know lots about the complex condition (I mean, it’s not like it’s a ‘common knowledge’ kinda condition!) she has taken on board all sorts of information about the kind of problems I’m trying to work around. Yep. Basically she is a Superhero teacher!

So I’ve been attending these Kung Fu lessons once a week and learning how to deal with things like someone grabbing my arm or my top (handy arm locks with minimal effort), how to apply the kind of moves I’d previously only learnt in slow mo’ (like sweeping someone out of the way with minimal effort), and different kinds of blocks and responses to someone moving in to throw a punch or a kick (in slow mo’ because I can’t react to it fast yet 😉 ).

Kung Fu is all about technique and it’s defence-based. So moves begin with a block and then respond in very straight forward ways to use the attacker’s move against themselves. It’s about the quickest ways to relieve yourself of your attacker so that you can exit the scene safely. My teacher is used to working around students with injuries and/or health limitations, so I really thank my lucky stars that I flukily ended up in her class at the gym as it turns out that it was the beginning of a journey I could never have guessed at the time. 🙂

I guess you may have heard of the phrase “once in a blue moon”? Well, yesterday there really was a blue moon (four full moons instead of three during this quarter of the year) and one of those ‘once in a blue moon’ things really has occurred…..

I have been awarded a white sash in Kung Fu!

Wheeeeeee!

Kung Fu white sash

Although I have been considered a bit special for a while as I’ve found it really hard to think fast after the controlled Tai Chi forms, I am hoping that if I slowly practice the moves during physio’ time that I may continue to improve.

It makes no difference to my condition other than a different type of physio’, and it makes little difference to my disability except that I am experiencing a bit more fallout pain-wise (but that’s for me to deal with, my inability to function the rest of the day is no different to usual in practical terms). It does, however, make me feel less vulnerable, allows me to feel more confident, to meet more people, to add to my Tai Chi with greater knowledge of how the moves are used in applications, to feel proud of trying something new and (hopefully 😉 ) progressing, to give me new goals to work towards, to share something martial arty with my boyfriend (because his Kickboxing classes are for crazily fit people only!). It is adding value to me and my life and that’s what is important. I also have a background hope that it will help to build a little muscle to reduce the partial dislocations, too (<crosses fingers>)!

I am very happy to have earned this sash. If I didn’t know better I would think they were being kind to me, but I do know better – they make sure that everyone is up to standard and then some. So I guess I must’ve actually earned that sash. I wonder if I can earn the next one? It might take me a while…. there isn’t another ‘blue moon’ until 2015! 😉

x

Oh yes, and on other news…. I’m on the Tai Chi team for the club. Bring on next year’s nationals! Who says a chronically ill disabled girl can’t compete for four minutes at a time and win some medals?! hehe 😀

Mission accepted. The search in town…

Physio’ session number 1.. spent in the smaller local town which has parking close to the shops. The shops themselves are all closely packed together which helps me to be more productive during the time allowed.

The Mission: to find a large pot for the stove that I can use to dye some Tai Chi silks!

Until now I’ve been borrowing my teacher’s spare silks for demo’s and tournaments and, as I intend to continue as long as my health allows, I figured it might be an idea to get some of my own so she doesn’t have to furnish me with her spare set every time.

The Dilemma: trying to find a colour which isn’t the same as other teams competing at the tournaments.

The Decision: to buy white silks and dye them. (Purply-lilac like the ones I borrow, or maybe a teal green?)

The Research: Turns out that although most home dyes require a bucket and some cold water, silks are more problematic. They require prepping first to open up the threads to accept the dye, and they require a pot on the stove big enough to fit them in. Hence ‘The Mission’.

So I planned the trip into the smaller local town as I had a couple of errands to run as well.

I queued up in the Post Office to post my friend’s birthday card to New York. (I’m so crap at remembering to post it early enough for it to travel abroad that I expect she is used to receiving belated cards from me by now)! Shifting my weight from foot to foot in the queue to try to keep the pain from increasing too much before I got to do the other stuff. (Queues are baaaad for pain levels 😦 )

I bought myself a replacement hot water bottle…. in a heat wave. That was a tough challenge! The only place that had any was the ‘Savers’ shop (hurrah!) and when I took it to the counter the girl at the checkout looked at it, raised her eyebrows, smiled at me lopsidedly and said “Really?”! Hehe. I don’t do normal! 😉

Hot water bottle, Hot Stuff

I then trekked in and out of the many charity shops in the two streets that comprise the outdoor bit of the town centre. The likelihood of a large old cooking pot being out on display was pretty slim so I asked in every store, and in every store they were sweet enough to check the back-rooms for me. But nope. No cooking pot.

Mission failed?

We-eell, I ‘mysteriously’ came home with a pretty trug to collect my veggies in
(I harvested some home grown rhubarb two days ago and somehow it would have been even more satisfying transporting it in a pretty trug instead of a carrier bag! 😉 ). I also found a selection of pottery spoons with a hole in the handle of each one… a) I always need more ‘spoons‘ and b) I had some sort of misguided idea about making some Spoonie-style wind chimes out of them or something! (Magic Dude would not be pleased with the noisy wind chime idea, though! So alternate suggestions are welcome! 😉 ). And I also found myself buying an unworn green necklace that still had the original shop tags on. Each from a different charity shop.

Charity shop buys

Okay, yes… Mission failed as I am still cooking-pot-less, but I feel pleased  to have survived the physio’, especially as it over-ran the time a little (not good for the pacing, oops, and not good for the pain levels, owwwww), but at least I have something to show for my efforts, eh?! And all this, including the hot water bottle, for less than a tenner so it must be okay! 😉

Current Status: Stuck on sofa in resulting pain as usual…
.                        Mission Large-Cooking-Pot still to be completed….
.                                     (gotta love a cliffhanger ending! 😉 )

x