Kung Fu achievement!

Well I managed to post more of the written ‘challenge’ posts in a row than I have done before… 9 days in a row! Win! (Although some days it was just a piccy, so maybe that’s why)!

Then my brain started to waft in and out of existence like some sort of a quantum hiccup? Or something. Er. Anyway.. it probably didn’t help that on the 5th of November I pushed myself a bit harder in my King Fu physio’ class for my grading. Yep. That’d do it!

As I’ve said before (when posting about starting Kung Fu and gaining my white sash) I attend a class focused on technique, so there’s no press-ups or doing laps round the gym or weightlifting or any of that other stuff that would induce exorbitant pain levels and kick in first with a good strong near-syncope response! We learn techniques and we practice them slowly because we have to get them right. If we tried to do them fast we’d end up with a sloppy technique so it’s a totally different animal to the way the kickboxing, muay thai and MMA (mixed martial arts) are also taught there. In fact it is much more like the Tai Chi that I also study at the same gym. There is a large amount of overlap between Tai Chi and Kung Fu in the style of moves and their applications so I find that each one has insight to give to the other, which is pretty cool.

Anyway, there I was on the 5th at the gym demonstrating different moves that I had learnt, both on my own and in slow-mo ‘sparring’. (I don’t do sparring exactly, I suspect I look more like a crazy slow-mo flapping starfish heading towards my opponent / bemused classmate)!

Here’s a pic’ someone took on their mobile phone of me doing some basic punch exercises at the end (my body was trying to keel over by this point so I’m concentrating very hard)…

KF Grading for yellow sashI passed the grading and now have the honour of wearing a yellow sash…

KF yellow sash

Wow!

As regular readers know, I don’t cap my potential. I’d rather enjoy the present and keep working to see where it might take me. I basically aim ridiculously high on purpose, and I strongly value each achievement that I manage along the way however far I manage to get.

I am lucky to have a teacher who is used to thinking adaptively from teaching Tai Chi to people with various health conditions, so she’ll help me find ways through wherever possible. There are no free passes and I wouldn’t like it if there were, but thinking adaptively around my health works.

I spoke to a fellow patient who used to teach martial arts (and who is wonderfully encouraging to me with my attempts at learning in this field despite the health issues – thank-you, you know who you are 😀 xx) and was ever so pleased to hear about adaptive teaching at her club where one wheelchair user was working up through the belt system. I know of others who have also followed right through to black belt despite only the use of one arm, and such like. There are many different styles of martial arts that have developed over the centuries which tend to suit different types of body sizes, strengths etc. It makes sense for someone like me to learn a defensive style which uses technique over strength, even if I was healthy I would choose from the defensive arts because it would work better with my frame and strength anyway.

To me, developing alternate aspects to allow for health / physical limitations is as sensible as choosing the right martial art for our body. In fact it is positively encouraged in Tai Chi – Eastern views of Tai Chi is that it is for anyone of any ability, and any good martial arts teacher will be willing to adapt for their students where required. I have spent lessons practicing my arm movements whilst sitting on a chair and I have spent lessons practicing only footwork when I couldn’t twist my painy lower back.

I incorporate the classes into my paced physio’ time, so that’s how I fit it into the pain management. The big problems for me are the autonomic sillies.. if I get slightly out of breath (pretty easy as I’ve not been able to exercise other than physio’ for so many years) then my heart goes far faster than it needs to, I get fainty and sometimes the palpitations and/or dysrhythmia kicks in. So I need to learn to go even slower when these start happening.

I’ve found that the palpitations and dysrhythmia are getting less common at the moment (they got worse on my current meds and the side effects aren’t improving so currently I’m gonna go with my ANS adjusting to the regular classes) (fingers crossed anyway)!

And that’s my exciting news! 🙂

Oh yes, and I’ve got a mini-tournament in Tai Chi at the gym on Sunday where I will be performing the Sun Style 73 form in front of others for the first time. It’ll be my practice at being in ‘tournament mode’ for next April because we’re learning more about how my health reacts each time I do it which means I can plan better each time. Fingers crossed that I don’t make too many mistakes!

Big hugs from me, I hope that you are all having as smooth-running a day as possible,

x

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Dissertation deadline day!

I was there to witness the very start of the day… that bit of the new day that turns up right after midnight. With not much brain-time I have to study a bit, rest a few hours, study a bit, and so on, so it takes me ages using a paced-brain approach, but I get there eventually! I had lost three months to worsened Dysautonomia symptoms and CRPS pain flare after two days of tests in London last November so my planned and calmly paced timetable had gone out of the window. About 1am I figured I could leave the rest of the sorting out for after some sleep but the pain had soared so high in my legs that I was stifling a scream. I continued stifling that scream for a long while and eventually managed to crawl off to bed sometime after 3am. Not the best start to what needed to be a productive day!

This was my dissertation deadline day, and here’s how it went….

1. Breakfast, 1st physio’

2. Check conclusion and abstract/introduction

3. Pour boiling water over fingers whilst making a hot water bottle for legs pain, doh!

4. Re-write bits of conclusion and abstract for far longer than I should have

5. Repeatedly fail to find the number references for the anonymous participant quotes

6. Cup of tea

7. Finally find them (hurrah for noting numbers in my Research Journal!)

8. Try to re-read conclusion and abstract but find that my brain is not available

9. Faulty fight or flight response kicks in (ah, The Fear!)

10. No choice but to throw caution to the wind and print 4 copies of the dissertation (324 pages in total.. it takes a while!)

11. Spot a typo’ in the original survey! meh

12. Sign all 4 authorship statements (with 4 different looking signatures, um)

13. Take photo’s of the bombsite style living room!……

Dissertation bombsite14. Use my 2nd physio to drive to a store where I can park right outside to get the dissertation copies bound

15. Whilst waiting for the binding to be done, I physio-wander round store in a surreal state talking randomly to employees

16. Drive home

17. Take photo’s as I parcel up the bound copies with all the additional paperwork

Dissertation parcelling up

18. Hang around a bit to see if Magic Dude will get home in time to drive me but no such luck, so I steel myself to drive into the village to post the parcel off

19. Dissertation is in the post, hurrah! (Post Office lady keeps reading the address trying to figure out why I am smiling exhaustedly about something which is “important” and needs ‘proof of posting’ (It says ‘dissertation’ on the address label, and I wonder why she keeps expecting to find more info there!)

Bye-bye parcel, I hope the markers are kind!

Bye-bye parcel, I hope the markers are kind!

20. Walk back to car park (I don’t really know how I’m still functional at this point!) and suddenly I break out in a grin.

21. The couple who have just parked their car next to mine look a little concerned when the lady who has just thrown her hands in the air whilst gleefully telling the world “It’s gone” starts walking towards them! 😉

22. Drive home. Still no Magic Dude. Put the bins away despite the pain. Stupid thing to do but I don’t want him to have to sort everything out when he gets home. I know I’m in for a Flare Extraordinaire as it is.

23. Tidy bombsite up a bit.

24. Receive surprise celebratory gift of gateau from Magic Dude on his return 🙂

25. Realise that I never had any lunch

26. Accept fresh hot water bottle and a cup of tea from Magic Dude

27. Engage Sofa Slug mode

That was three days ago and I am still totally exhausted and beginning to flare even more. I hope I’ve managed to do enough to pass despite the health issues. Fingers crossed.

Now…. sleep, need more sleeeeep, and ohhhh the paaaaiiin! *grimace*

Whatever the official outcome, whether I pass or not, this counts as a win for attempting, enduring and (hopefully) surviving! Owieee and yet also hurrah!

x

My CRPS journey to happiness

Hello! Yes, it’s me, please don’t fall over in shock! I know I’ve been awol for a while whilst getting to grips with the final dissertation for my studies. Today is allocated to studying, well, in my functional moments anyway! However, I’m in a lot of pain from how I’ve been sitting so I’ve moved to the sofa (complete with duvet and hot water bottle, of course) and rather than faff about online doing unproductive things whilst I wait for the pain levels to calm down a bit, I decided to pop in here and wish you all…. (wait foooor iiiiiit…)….. a very happy first ever “International Happiness Day”!

Guffaw!

Seeing as my brain is full of study and it’s a more painy day than usual I don’t relish the thought of going out for a physio walk today and getting told to be happy, when I’m concentrating on moving through the pain! But I do like the idea of formulating some replies that would subtly inform whilst making me laugh hilariously at their surprise at my daring to be so jokey about such a serious subject as my health! (Twisted sense of humour, much?) 😉

I remember a horrific physio walk, back in my early physio days. The physio experience got soooo much better because I persevered with it, but this was back when I was desperately trying to slowly make it around the (very small) block without bursting into tears. Then the ruddy postman cheerfully suggested to me that I should “cheer up love, it may never happen!” as he passed me by. Okay, so the thought of punching him in the face did occur to me in my imagination, but in reality I just feigned a smile and promptly burst into tears the moment he’d turned away.

We all know those days. But I’ve found that happiness creeps into my life in new ways. Admittedly I look for it because I want to be happy. I’ve spent time thinking about what truly makes me happy, and it really is the simple things that make me both happy and kinda peaceful on the inside, too.

I smile when the sun shines. I really enjoy a nice cup of tea (oh okay, many many cups of tea!). I adore my friends near and far, (some of my closest friends are beautiful souls I met through online CRPS groups, and even lovelier is that they are beginning to meet those of my closest friends who know me from the 3D world and they are becoming friends with each other, too. *glee*).

I loved hearing the first Spring birdsong a while ago (Spriiiing is on the way… waaarmth is on the way! Okay, so we’ve had more snow since then but I didn’t foresee that at the time so I still smiled at the Spring songstrel)!

I set myself little goals because that way I am not endlessly fighting to get to a far-off distant goal. Instead I achieve little goals along the way to the big goal, each of  which gives me a sense of achievement and makes me smile. It brings a feeling of capability and self-worth with it, too. Often my big goals are questionable as to whether I can actually achieve them, but my view is that I don’t know if I don’t try, and if I achieve lots of little goals along the way then every bit is an achievement to be proud of, however far I do or don’t get in the broader picture.

For example… I’d love to do a PhD, so I’m battling my health to get my masters degree. I don’t really expect to get a PhD, but I expect to keep looking into the possibilities and seeing if there’s a format that could work for me. Never say never, right?!

Another example… I’d love to represent my country doing Tai Chi at the Paralympics, but Tai Chi isn’t a part of the Paralympics and won’t be any time in the foreseeable future. (Yep, I even emailed the International Paralympic Committee to ask! Well, if you don’t ask, you don’t get, right?! tee hee). I’m not saying I’m that good, but I do tend to aim high these days just to see what is possible. I’m still working on improving my Tai Chi as much as I can for as long as I can. I see it as something which can help me through my life into my grey-haired years (which, between you and me, I appear to be embarking upon already but they’re not too noticeable, yet, shhhhh 😉 ). One of the keys with CRPS is the balance between activity and rest, for me Tai Chi is a perfect activity challenge. (Here’s another secret… I’m even entering a big Tai Chi tournament! I figured, “why not?” It’s ‘only’ a beginners classification. I’d love to whoop some able-bodied asses with my slow-mo’ disabled styleeee, hehehe)!

I also wanted to do something to help my fellow CRPS patients, hence this blog came into existence. But with my professional(ish – my health stopped me from working after the psych’ degree) background training I wanted to do some research that would help in a more professional capacity. It’s all very well being an ‘expert patient’, but I figured a paper from a ‘researcher’ has more weight with the multi-disciplinary professionals involved, (not much more weight, but a bit, hey?). So I’ve spent my final masters module doing just that. Goodness knows if I’ll get these pain levels down enough to hit the dissertation deadline and pass, but after that I’ll have no deadline, and I will have the time to spend on writing a paper to share.

All this stuff, broken down into little chunks, little achievements, little moments of joy, (yes I’m still adding to my Jar of Joy!), moments of happiness both the big (a bronze medal at a little local interclub tournament last November. I know I didn’t write a post about it, I should have but I was feeling shy about it at the time. I think the reality has sunk in a bit more, now!) and the small (the sun shining in through the window whilst I sip a lovely cup of tea). I have soooo much happiness these days, I know it sounds weird but I can’t really explain it other than to say that my wants and appreciations in life have changed. Not that they’ve been downgraded, although it used to feel that way during the earlier stages of transformation, it’s actually more that I’ve recaptured my childlike appreciation of the things that we so easily grow to miss as busy responsible adults. Perhaps that’s why I like hanging out with the nieces so much! They’re about the same age as I am in my heart these days 😉

Fun. Silliness. Joy. Happiness. These are the ways I live these days. Despite (and quite possibly because) of the massive relationship losses that so many of us experience. Achieving small goals is valuable for the associated personal progression (I love learning 😀 ). I know I have pain and additional neurological, autonomic- and central nervous system issues with resulting physical and neurological difficulties, but I prefer to see them as a challenge! I relish a challenge these days! I never thought of myself as competitive, I want everyone to do well and I like to encourage others to progress, to become, to *be*, if that is what they want to do. But it turns out that there is a type of competitiveness I hadn’t taken into account before, and that is my competitiveness with myself! That is, that I always want to push harder, to be the best that I can be at something, but still within realistic boundaries applied by my health. After all, pushing too hard only results in going backwards healthwise and having to cover the same ground again to get back to the standard I was at before. That’s fine, I’m in no hurry. I am not competing with anyone else. I am on my own path and I’ll take it at a pace that is most productive for me. I’m fine with that, it’s worked for me so far.

It’s always exciting looking at how far I’ve come and gleefully dream up new ludicrous ‘big’ goals to make me grin! Half the fun is inventing a new goal and fully expecting that I can only get so far but that I’ll be so proud of myself for what I manage,… and then surpassing my own expectations. That’s fantastic! I do not expect to achieve my goals, but I expect to work towards them and achieve stuff along the way! Gosh I’m a paradoxical chick, huh?! 😀

Elle and the Auto Gnome, Tree of my CRPS experience

Above is a tree of my journey that I created a while ago. I began it with my health changes as the roots and trunk – the beginning of this particular tack of my journey. Then the experience got less concentrated, more diverse. It branched out into many things. All inter-related, many overlapping in timescale, so there’s no pattern to the branches, just a lot of words, feelings, experiences and more that led me to starting this blog. Then I found a whole new chapter of my journey lay before me. I look forward to living it, I’m intrigued to see what happens next in the story!

Lotsa love and happiness from me,

x

How to stop laptops from falling on your head

I awoke as Magic Dude got ready for his early shift this chilly Sunday. I found that my hints of a sore throat had increased overnight and I was warm and yet really cold at the same time. Uh-oh, I can’t afford to be ill, the knock-on effects with my condition is severe and I have studying to do that I’m already way behind on. So my lovely Magic Dude brought me a cup of tea and the laptop before he left and made sure that I had ‘warp capability’ (i.e. that the wifi was switched on 😉 ).

I set the laptop up on  the adjustable-height stand (which is an absolute saviour for allowing me to use the laptop without putting the weight on my CRPS legs) but the near-fainting then decided it wanted to join the party (one of my Dysautonomia symptoms) and I had to lay down. So I did what I have done before…. I cranked up the height of the laptop stand so that it looked like this…

Elle and the Auto Gnome, laptop stand at max height

My eyes must’ve thought they were missing an opportunity coz they then decided to join in, too. As I tried to focus on the screen my eyeballs roamed around misbehaving and not allowing me to see what I was trying to look at. It was all getting a bit silly, and then when I then moved my painful legs the laptop fell on my head!

Ouch!

I can read the signs. When they’re as unsubtle as this it’s kinda hard not to! I took this as a suggestion that I put the do-stuff idea to one side and instead I snuck back under the covers and phased in and out of sleepy consciousness until midday. Not the norm’, but managing this condition includes knowing when to say ‘zzzz’. Most of us with CRPS and/or Dys’ are familiar with endless lack of sleep, so when a day arrives where my body will try to fake some not-quite-sleep then I’ll take what I can get, thank-you!

Now I’m up, I’ve done my first physio’ of the day, and I’ve finally sought out the other half of the velcro the Open University furnished me with. The laptop stand that was sent out to me to help me to try to study despite the health issues was already decorated with a couple of strips of velcro. The idea was that I would then stick the other part of the velcro to the laptop so that it would not move on the stand or, in the case of a near-fainty person, it would not be quite so likely to fall on my head! But the laptop was so shiny and new I couldn’t bring myself to deface it with ill-person-velcro! Hah! Not so any more, I have velcro and I will use it. My head demands it! 😉

Elle and the Auto Gnome, laptop stand with velcro

It’s funny how no matter how comfortable and accepting we become with regards to our conditions and limitations, there’s still the odd little thing which we get stubborn about on principle. It’s taken me nearly a year to get to the stage where sticking bits of velcro on my laptop (my constant companion and portal to the outside world) does not seem such a violation of shiny tech or such a feel of being abnormal enough to require velcro. Daft eh? But truly, if something works, make use of it. That’s how we enable ourselves to do more.

So onwards with the velcro! My little interim task for the day!

x

Birthday treats and problematic food

Whenever my brain has been functioning recently, it has had to be applied to my studies. Although I was so incensed by the welfare “reform” (removal) happening in Britain that, as I’m sure you saw, I applied some on-the-planet time to the drawing together of some of the horrific details. I will come back to that topic when I can, but meanwhile I’ve been so limited on functional brain time that if I’ve found a while where I can think fairly coherently without getting a headache, I’ve been trying to piece together some writing for the next deadline. Some days I’ve managed to do this for half an hour or so but then I can spend the next two days not being able to think properly as a result. Consequently, my Castleville kingdom is coming along nicely!

I’m one determined bunny though, and motivation kept arriving by post as my birthday this year fell right in the middle of the study spike. This one made me laugh…

And this one says a lot!…

The morning of my birthday began with Magic Dude bringing a tray of treats to me whilst I was still incapacitated and stuck in bed, awww. Including a chocolate cupcake with two cute dinosaur candles in it! His card turned out to be rather appropriate…

And inside it says: “… only instead of nun chucks they come armed with cupcakes”!

I wouldn’t say that he was armed with a cupcake as such, but he did sneak upstairs to deliver a cupcake along with pressies and coffee! Despite my pain and brainlessness, it was a lovely way to start the day.

We decided to go somewhere different to have an outdoor physio walk somewhere pretty. And shock of all shocks… the sun shone! It’s recognised by several of my close friends that it is weather-tradition to rain on my birthday. So if I have a birthday where the sun makes an appearance… there has to be ice cream!  ; –)

In fact, we got tempted and went one better than that by having a cream tea in a little village café and then we had ice cream!

Unfortunately, with all the distractions of intense pain, gorgeous company, lashings of tea and the sheer joy of being out of the house… I didn’t notice that I’d left the cafe wearing some of the cream tea. Wearing jam, to be exact!

Ah well, I’ve learned to live with the funny looks I get for pulling up a second chair to put my legs up on, so a few funny looks over some dribbled jam is nothing! 😉

Hehe, I’m such a classy bird!

Well, yesterday I hit an important deadline in my research, which means that I can now give myself some much-needed recuperation time. Except for I’d rather be here writing to you lovely lot instead, so here I am! Hello everyone, here’s a big virtual hug and a grin from me 😀

x

Studying with a temperamental brain

Yes, I really am still here! I’m sorry for the hiatus, I’ve been buried in my books, research papers, research journal, notebook ramblings, various search engines and ohhh the list goes on! My poor ickle brain 😉

I have been wanting to write a post or three, but until I have the next deadline out of the way then I can only do so in the cheeky odd moment here and there. I love writing for the blog, so it’s quite tricky to be tough on myself and crack the hypothetical study whip when I’d rather be writing to you lovely people. The result was that I argued with myself that creating a new page of useful links for you was perfectly acceptable time to daringly spend away from the books! 😉

So I snuck off earlier and created the new page. There are some links in the ‘blogroll’, (in the sidebar on the Home page), but I suspect that they don’t always get discovered. Which is a shame because I reckon a lot of people would find them rather handy. So, to try and make them easier to find, I’ve created the page so that you can click on it from the main menu on the Home page of the blog. So far it’s a few main websites, but I will add to them over time as I find other helpful sites, (and as and when I steal a bit of time from the studies!).

I only have so much working-brain-time so I don’t actually have that much of the day that I can study in, (which ramps up the pressure somewhat, and renders me pretty useless for the non-study hours, too). And the more I make my brain work, the harder it gets to convince it to work properly. So the new tactic is to study for an hour, tops, and then rest for two, or even three hours, doing simple stuff. It doesn’t allow me much time to get my studying done, and I’ve got a deadline looming in the not-too-distant future, so I’m dangling the carrots of tea and ‘Castleville’ (about all my brain seems to be up to in between study sprints!) to keep me plodding onwards!

 

Don’t for a moment think that this studying lark is a drag, though. It’s not. I love it. It’s great to be doing something progressive for myself, of course, but it’s also phenomenally motivating to be studying with the aim of helping others and of broadening research knowledge available out there in the ether. It’s exciting to be making a mark that is useful, it’s thrilling to be using my brain and putting it to good use, and it’s a lovely feeling to get to write about things that I’m interested in. Structuring information, arguments and pointing out a big hole in the research ‘state of the art’ and then to getting the opportunity to trundle on in to attempt to shed some light on that gap in the knowledge base. Waffling much?! Yes, I absolutely love getting stuck into research that I really care about.

But I’m going off on a happy little blog-writing tangent and ignoring the open book next to me with all those indecipherable notes in the margins looking at me and waiting for my attention once more.

Aw, Magic Dude has brought me tea. I should stop writing so that I can recover for the next leg of the brain dance. Hope you’re all doing okay, much love and enthusiastic waffle from me!

x

Studying from home

I returned from my Tai Chi lesson with creaky legs and a pressing urge to make a large vat of refreshing tea and to soak up the sunshine. With tea made, I set up the laptop on the bed-table and settled down under the duvet, with sunshine and sounds from the urban outdoors pouring in. Right, first thing to check…Facebook! Some things never change 😉

I find that it’s a good way to set myself up for serious do-stuff time, though. It relaxes me before I start. Studying is easier with a calm, unstressed mind and my pain levels are often lower if I can relax and be comfortable.

I started studying for my first qualification from the Open University (OU) back in, ooh, about 2002 I suppose. I did not have the cranky old laptop back then. In those days I sat in front of a big old computer which sat on a massive desk, whilst I sat on an increasingly uncomfortable chair. I would sit balanced on many cushions with my legs precariously wobbling on a not-very-helpful leg rest. Perhaps I looked like a picture from that old fairytale ‘The Princess and the Pea’. (Yep, that’s the one where she couldn’t get comfortable, even on a pile of about a hundred mattresses. The lucky goil only had a rogue dried pea as the cause though,… much easier to sort out)!

Back then I worked through pain levels so high that, looking back now, I have no idea at all how I even completed the courses, let alone passed them. But I had discovered a drive within me that I knew nothing about until I became disabled. It turns out that I just will not give up! Who knew? Not me! Turns out I’m determined. I’m stubborn. Downright crazy? Well, some people couldn’t see why I would study in that condition. But we have to have something to hold on to, and that was one of my things I would not let go of.

I need goals in my life, achievable short-term ones are good for keeping me motivated and feeling a bit dynamic. But I also feel the need for something progressive in my life. Otherwise I feel like I’m standing still and the world is passing me by. Learning something does the trick for me. It doesn’t matter if it’s academic, physical, art & crafty, techy…whatever. If it means some sort of progress, then it makes me feel good about myself. It makes me feel like I’m doing something meaningful or useful. Which is blooming important as although I can have bouts of physio’ activity, they are never long enough to feel like I’m of much use generally.

When I started studying with the OU, I had not yet received my diagnosis. I was waiting for ‘my legs to get better’ because I knew nothing else. I chose my subject matter on the basis of a change of career, which I looked forward to getting on with, yes, ‘when my legs got better’.

I received my CRPS diagnosis in the last year of my OU degree, thwarting all my hopes and plans. But I’d already applied to do another course, which was due to start the following month. The studying had become a large part of my identity, it was the only progressive thing in my life at the time, so I wasn’t going to give it up. In fact it gave me something to hang on to while everything else was being turned upside down. It was a constant, and that helped. When the pain levels allowed… I could always bury myself in my studies.

One day I might even dare to go purple, too!

It’s now 5 years since I last studied. At the beginning of that time I had a really bad patch where I just broke down and fell apart. There was literally nothing in my local-life other than insurmountable mundane chores like trying to get food from the kitchen, and the only thing I had left that I did by choice, my studies, was also blummin’ hard work because of the pain levels involved. There was no joy in my life and I crumbled. I had a really honest conversation with myself, and with one of my besties, and decided to move home to be closer to my family and, in fact, said bestie. The dream of a masters degree was gone but it was totally my choice because, when it came to the crunch, of course my day-to-day quality of life would improve more through being closer to my family than by getting awarded a masters degree. The resulting moving-home pain threw everything out of the window for a looong time, though. So I haven’t studied for years.

I always wanted to get back to it, but, “What’s the point?”, I would mutter, “It’s not like I’ll ever get to use any qualifications I get…”, said with a ‘sad face’.

But, yes, you’ve guessed it, I’m too determined/stubborn/crazy for that. My heart won over my logical brain!

The Open University are supremely, amazingly, wonderfully supportive of any disabled person looking to study with them. Well, they are to anyone, of course, but I am referring to the additional services and support provided to people who are experiencing conditions which don’t allow them to study in the same capacity as a ‘normal’ student. I had extreme pain issues when I first started studying. An OU assessment resulted in some really helpful arm-rests, a better-than-the-floor foot-rest and a really helpful ‘book chair’, for example. All of which were aimed at helping to limit the pains in my legs and neck which were caused by studying.

But study support isn’t necessarily in that form. I made the acquaintance of a lovely lady, who is still a good friend of mine, when she was placed at my disposal during a residential course. She helped me get about by wheeling me to all my lectures, to lunch, to more lectures, to my room, to dinner… She was my devoted and very professional helper for the whole week and without her I couldn’t have done it at all. Thanks to the OU I could study the course and I gained a friend!

I definitely didn’t look as serene as this though. Pained expressions and hunched shoulders are not that beautifying!

Now, after much discussion with the OU about my more recent dysautonomia problems, (particularly the neurological confusion), and whether it would be viable for me to attempt to study, I have been assessed again. And the encouragement I received, on a personal level, has stood out in particular.

An assessor came to my home, to save me from having to painfully drive anywhere. To have someone simply listen to the problems that I have and consider them seriously to work out ways around them was, in itself, a glorious and shiny experience. Most people do not take an interest in such things! And to be reassured that I deserve the support on offer was something I really needed to be reminded of.

I am stubborn to the point of being of detriment to myself, I do not like to ask for help. Not in a grumpy don’t-call-me-disabled way, I’ve been through that whole acceptance rollercoaster thingy! Just in a trying-not-to-be-a-hassle kind-of way. I like to do things myself despite my conditions, but that’s a bit la-la-land, really. Liking the idea of doing stuff, and actually being able to do stuff, are two whoooole different buckets of monkeys!

So the assessor prodded at my distant memories of what it was like for me to study pre-disability. I was shocked to realise how easy it was back then! Shocked at how severe the limitations are now by comparison, and at what help I need to improve my ability to study to a level that would, despite the improvement, still place me at a massive disadvantage compared to ‘normal’ students. I have got used to living with these limitations, and I don’t usually like to compare them with what life used to be like because it’s just not helpful to do so. This is one incident where it was actually necessary. Okay, I acknowledge it…. I really need the help!

Working round the neurological problems was much harder to figure out, but the assessor came up with several suggestions. Some were amazing, and others not really applicable to my course requirement. She covered the lot and we’ve picked a couple of things which might help a bit. But really, the rule of thumb will be – when the brain says ‘no’… no studying for me. Bertram tends to turn up and induce the ‘fight or flight’ unhelpfulness when I’m emotional or anxious about something, though, so I’m hoping that studying will actually be far less affected than interactions.

I’m still scared about not being neurologically up to it, but if I don’t attempt it now, then I’ll just be accumulating time. During which additional dys’ issues will get to raise their ugly little heads and make the whole thing even harder for me. So I am going to grit my teeth and hope I can do it. It’s not the skills or abilities that would be the problem, my worry is whether my erratic ‘do-stuff’ moments can occur often enough for me to hit all of the deadlines. I’ll be really disappointed if I can’t, but even if that happens I’ll feel better knowing that I tried.

So, there I was sitting upstairs, with the sun streaming in. I hoped the knocking that I could hear was not at my front door because my legs didn’t want me to get up. But I thought I’d best make myself check. And lo! It was my Open University Brown Box of Wonders! With each new course you get the magic box delivered to your door, and in it are the wondrous items associated with your course. Any OU student knows that the arrival of said box has quite an effect. There is a weird combination of fluttering excitement, big grin on face, as well as stomach churning fear, complete with worried looking eyes…we look quite a picture!

So here is my Brown Box of Wonders. And I’m going to open it up…..

I have…wait for it…..

A fair amount of space-filling brown paper! (Woohoo! That’s gonna get shredded for the compost)!

And a folder….. with lots of different bits of printed paper in it. Yep, that’s about what my brain can take in at the mo’…it has paper in it! I’ll stop shaking in a while and get my brain back online! (I’m slowly getting more used to working around the over-the-top ‘fight or flight’ thing, but it’s a good thing I don’t have to write this all at once)!

Phew, and there’s the CD ROM thingy, or whatever it is. That’s the other aspect of the Box of Wonders arrival… the first thing is to check the ticklist and make sure everything is there. Very occasionally something may be delayed and all affected OU students turn to the phone to suss out what’s going on! But that’s the thing about home study, you do it for yourself.

There is amazing support with the OU, including phenomenal support for disabled students. It’s support to enable us to study, then we can actually get to do the learning bit for ourselves. When we get to the end and receive that hard-earned bit of paper, it shows that we did it. No-one else. I have a bricks-and-mortar degree from when I was able-bodied, but I feel like I just somehow ended up with it. My OU degree means so much more to me because my skills got so well honed, and the outcome was that I had so much more faith in myself and my abilities than I ever did before. I found out what I was capable of without talking to tutors, or asking fellow students. Don’t get me wrong, you’re not isolated during home study – you can do all that stuff, it’s just that I didn’t. I just studied when the legs were less screamy, whatever time of day that was, and I did it in my own little isolated bubble. My skills were uncompromised, everything I achieved… I achieved. And it’s an amazing sense of achievement, I highly recommend it!

My shiny new folder!

Three cheers for the OU! (Yes, I’m excited, now, can you tell?)! Without it those of us who cannot attend full-time institutions would not have had the same level of access to these courses and qualifications. There are many parents, full-time employed, disabled, people serving in the armed forces abroad, carers and even young people who cannot afford, or who want to avoid, the large debts of bricks-and-mortar universities, who have gained in confidence, skill-set, qualifications and even successfully changed career because of the OU. And not just in the UK, either.

OU education will be much less accessible, (three times more expensive), and less broad (fewer courses to choose from), if the proposed higher education cuts go so far as to also hit the Open University. I’m far too busy day-to-day just trying to live with the symptoms of my conditions to be able to do much in the way of fighting for causes, but I certainly spared the mere minute or so it took to sign the online petition requesting the UK government re-discuss the OU-specific cuts in Westminster. The thought that many others like me will no longer have the opportunity that the OU allowed me is galling. It is what has got me through tough times, it has gained me respect from other professionals (instead of ‘just’ being an expert patient), and opened a window of (health dependant) possibility of usefully working from home at some point in the future with the high level skills that I have gained. I hate the thought that others like me will simply no longer have that chance.

In my land of make believe, that place I retreat to when times get really tough and the pain levels are really high, I could go and study for a PhD if I wanted. No neurological limitations, viable physical attendance, a magic pot of money to pay for it and appreciative potential employers at the end of it. *sigh* That’s a dream for rainy days that I shall treasure. Dreams also keep me going, even if they remain ‘just’ dreams. But thanks to the OU I got the degree I wanted, and I achieved the post graduate diploma, too. Even if it turns out that I can’t work around my conditions well enough, I’ll know that I gave it a go.

And there’s always tea!

Wish me luck! And if you want to look into any sort of studying I highly recommend it. Oh, and please spare a mere minute or so to follow this link and add your name to that petition I mentioned, there are loads of people out there who will be really grateful.

Perhaps the powers-that-be at Westminster will have a moment of clarity when they look again at the value that the OU adds to the available human ‘resources’. And if they do, then us lot will still have the chance to follow our dreams as far as we can. 🙂

Meanwhile, that cup of tea is calling me….(& probably Facebook, too, shhhh).

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