What I did on my AWOL-idays

Goodness me, I’ve missed being here! But where did I go?

Last Spring a Tai Chi mag’ asked for articles and I offered to write one about how much Tai Chi has helped me with my health issues. The tricky part was that they didn’t reply until this Winter, and you know how much pain we’re in through Winter, right? Yeouch! So I had to concentrate on writing the article as I was having far less Brain Time to write. The trouble began when I was subsequently asked a few extra questions and instead of them being practical health questions they were more about my experience and motivations…. and then my brain fell out.

The end! Eek!

I still don’t have much brain, but that’s hardly surprising coz I’ve actually been doing rather a lot while I’ve been missing my blog.

In the UK we have a cliche of the homework title that we were all had to write for when we were young children at school: “What I did on my holidays”, but as I’ve been awol I guess it’s “What I did on my awolidays”. Here’s what’s happened since I last got to write to you…

I spent a lot of time creating a CRPS FAQ for a support group that I admin’ in, and yes – it is to be uploaded here too. Most of it is now transferred to the weblog so I’ll be able to post it here soon, x

My beloved car, my companion for 7.5 years, started to keel over and I had to part with him. The Magic Dude and I have bought another but it’s not the saaaaaame!

I had lots of dentist appointments after losing an old crown from a molar tooth.

I had a haircut. That counts as ‘news’, right?! 😉

I finally got to go to a graduation ceremony for my MSc that I completed with my own CRPS research last year. The Open University do a good graduation ceremony 😀
P.S. I wore high heels across the stage… take that CRPS! Mwoohaaahaaa! Of course my wheelchair was nearby for the rest of the day, but, y’know, rawr!

I finally got to go and visit Stone Henge. Woot! As I now live on the south coast of the UK it wasn’t that far to travel and the wheelchair allowed ambling around the visitor centre and going for a cup of tea afterwards too.

Stone Henge

I went to see Giant Steve 2 at the cinema! (That’s Captain America 2, of course 😉 ). Although it was on the same day as the trip to Stone Henge (what was I thinking? Doh!) so I spent the whole time trying not to pass out!

Near-syncope at cinema

Not doing a very good job at guarding Magic Dude’s popcorn, eh?!

I finally got to start the salt tablets to see if they’d help the near-syncope at all as it’s been getting worse all year so far (more on that to come in a later post).

Lots and lots and lots of Tai Chi practice during physio’-time and in-my-head practice to strengthen those neural Tai-Chi-ing connections when I was able to do so. This was in preparation for one local and two national tournaments.

All sorts of doctors appointments for blood tests, blood pressure monitors, discussion after I ended up in Accident & Emergency (ER) one day and chasing up a nightmare referral to a local cardiologist (which still isn’t sorted). So you know, the usual!

I taught my first class of Tai Chi! Wow! My teacher was unavailable for a week so the two classes that I usually attend anyway as part of my physio’ became ones where I physio’d by teaching instead. Cor, who’d have thought eh? 🙂

I found that I have had so very horrifyingly little Brain Time that I turned to gaming in the last few weeks of the run-up to the last national tournament to let my brain and body wind down together. Magic Dude has had to replace his old laptop and he’s now got a sparkly newfangled one so we decided to finally try out the online Lord of the Rings game. 😀

I went to a concert – Seasick Steve, and he was aaaawesoooome! It was stoopid timing with the tournament stuff, but he really was ace and I really am stubborn!

Concert, Seasick Steve

I’ve spent the last few days away as poor ole Magic Dude hasn’t had any time off work for so many months (except to drive me to and from appointments and the tournaments) and I’ve been struggling with pain and near-syncope highs of 9s for many weeks now. So we got away, we saw Things, and we did Stuff.

And, in true ill-person style, I am now trying to recover from the few days that we spent away!

And now I’m back and have a huuuuge amount of things I want to do and there’s never enough time to do it all in. At least, there’s never enough time where my brain is working well enough and my pain levels are low enough to do all of the things I want to do, but you know I’ll try anyway!

More to come soon,

Hellos and hugs and bestest wishes from me,

x

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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

Open University “Blog of the Month”, awwww, x

Hello all,

Yes I have hit my study deadline and am having a brief study-free hiatus to  catch up on my ‘to-do’ list!

Though you may have noticed that rather than sorting out my accounts or tidying up the house, I am indeed on WordPress… oops! 😉 tee hee

The studying is going well and I’m really enjoying getting stuck into it. It’s not the work itself but merely the workload that can be an issue at times. There is so much to do in the timespan for this particular module. But as this is a final masters module, it is different to any other course I’ve studied as there is no longer a clear guideline of what to do when. Instead, it is self directed study and, me being me, I want to do soooo much. So it is my own fault that I have lots of work to do, hehe. Good thing I picked a topic that I’m passionate about, eh?!

I also received a message the other day from a lovely lady at the Open University asking me if I would mind if she posted this blog as the OU’s “Blog of the Month”. I felt so heartwarmed at the request. This weblog has a life and purpose of it’s own, so of course I said “yes”. I am still so touched that she felt it worthy of a mention in the OU newsletter that gets emailed out to students and alumni.

I’ve snuck off from my non-study catch-up because I’d like to say hello and thank-you to all of my OU peers who followed the link to have a look-see. I’ve received some wonderful and encouraging messages from you and I had no idea that saying “yes” would result in sooo many views. It was truly an astounding and heart-warming few days. Thank-you so much, xx

I am now formulating a plan for how to juggle the study and blog a little better, because I don’t want to keep having to be temporarily awol whilst heading for the deadlines! This studying doesn’t half train you up in some ‘transferable skills’! 🙂

Love and hugs to all my readers, I feel so blessed to have met so many wonderful people through my writing here. Wishing you all well, xx

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

A productive day (and I know where my towel is)!

This morning I looked in the mirror and for once I did not notice the dark circles under my eyes in quite the same way that I usually do. I did not look at myself and have one of those moments where all of the stuff that you’re trying to contend with whizzes through your head in quick succession culminating in a big “Okay then, let’s get on with it” kinda sigh!

No, this morning was all about practicalities. Get downstairs and eat breakfast, rest my legs on the sofa to lessen the pain for a while. Then get ready for my Tai Chi class that doubles up as physio’ for me. That’s when I looked in the mirror. In ‘do-stuff’ mode. Just cover up the dark circles with some magic under-eye make-up and get ready to roll.

I had so much to do today. Or, more accurately, I had a lot to do by my standards!

I had a Tai Chi class to get to, in which I wanted to function as best I could, then I had to get home again (stuck in traffic for a while, ooh that doesn’t help the pain levels), get the laptop switched straight on and set up on my ‘laidback’ laptop stand that I can use on the bed. I had a study deadline to meet today, you see. And so, rather than dwelling on life, the universe and everything, my brain was preoccupied with the two tasks I had set myself today. Tai Chi and emailing off my work for my first study deadline of the year.

Plus the idea in the back of my head that I wanted to write a blog post today, because it is ‘Towel Day’ after all!

Yes, you read that correctly, it is indeed ‘Towel Day’! Those of you who are Douglas Adams fans will be nodding your heads already, of course. And perhaps our numbers have grown a little since the ‘Hitchhikers Guide to the Galaxy’ film release, who knows? (I was raised with the original TV version before I discovered the book. Good old Slartibartfast.  😉 ). There must be a fair few people around the world now who are aware that the answer to ‘life, the universe and everything’ is actually, er, 42!

And on this day, all those hoopy froods reeaally know where their towels are at. 😉

So, yes, all in all in a good day. A productive day. A painful legs day but not so much of a near-fainty day, despite the heat. Next time I look in the mirror I hope to espy a little satisfaction there. Some days we come out on top and fighting.

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).

x