Photo Challenge for CRPS Awareness, Day 27

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

Day 27 – A picture of your favourite triumph in pain memory

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Okay, I’ve already mentioned the Tai Chi medals during the challenge, so today I’m going for the academic side of things.

On the 12th June I got the results for the final research module I’d completed in March towards my Masters Degree. I passed! Which also means that I have successfully completed my MSc. Hurrah!

Yes, I’ve got degrees before but this one was different. I studied for my BA Degree straight after school. I did it because I’d always expected to continue in education and back when I was 18 the UK education system did not involve scary tuition fees so the money we owed by the end of it could be just a few grand, not the devastating amounts that students find themselves owing these days. I was lucky. And I didn’t know how lucky I was at the time. I pottered along in life, got myself a job, met a guy, changed jobs to move to the same area as him, bought a house…. all that jazz.

By the time I studied for my BSc Degree I was in lots of pain. I studied it to retrain because I had a career path in mind, I wanted to make myself useful in the world and I’d spotted a niche that I could make a difference in. During that degree my health got worse, I went from crutches to wheelchair, I went from working to having to give up work, and I went from having no clue what was wrong with me to getting a diagnosis. The diagnosis turned up in the same month as my final exam.

My health was to scupper my career plans, but I didn’t know it back then so I rolled straight on into my MSc. I studied three of the four modules then had a major life rethink, and moved to a different county to be closer to my family. My family have always been most important to me in all the world so, unsurprisingly, my assessment of my new disabled life made me decide to change everything to be nearer to them. But I still could not give up all hope of following my career path, so I moved closer to my family but not right over into the same county because my hypothetical working future had more of a chance in the inbetweeny bit of geography. So, closer to my family and more of a chance of making a positive difference in the world. Ace, right?

But I had no money left to pay for the final module. As time went by my health got worse rather than better. By the time I’d saved enough money to do the final module (that took 6 years) the neuro’ symptoms were rife. My chances of studying to the standard I had done previously were seriously compromised. My viable study time was no longer ‘just’ affected by the chronic pain issues, but also by severe autonomic issues as well as brain fog that could render my brain pretty useless for days, and even weeks, at a time. I’d be a fool to spend the money on a venture like that, right?

So, fool or just plain determined maybe, I figured that my choice was to either a) try it and fail knowing that I’d at least tried, or b) not bother and always wonder if I could have done it. The second option didn’t appeal at all. So I went for option ‘a’.

Towards the end of the time period that I had available to get my research completed and written up as a dissertation… I lost my brain. For three looooong months. Good ole CRPS, thanks a bunch! So by the time I could comprehend things properly again I was three months behind. I was in a bad position but I wasn’t going to give up. The encouragement and belief in me from my friends online was phenomenal, plus my fellow students have been such a lovely bunch of people to travel this road with, of course Magic Dude did anything he could to help me healthwise so that I could concentrate on studying, not to mention the two amazing ladies who were my research reliability coders.

On the day that I completed my dissertation I took photo’s of the event. Whether I passed or failed would not detract from the achievement of just completing the challenge and doing the best I could for my fellow patients who I hope my research can eventually help.

But I did pass. And now I’m awaiting hardcopy feedback from the university so that I can address any issues before completing the paper for submission to an Open Access journal out there somewhere. I even entertain the thought of a PhD from time to time! But one step at a time. And each achievement should be celebrated rather than rushing on past it. Life is to be lived, good moments are to be savoured, and being proud of yourself is a good thing.

Completing the challenge was an achievement. Passing was a bonus!

MSc

x

P.S. If you’re thinking about studying despite your disability I say “go for it”! In the UK there is a Disabled Students Allowance (DSA) which can help you. It applies to all universities including the Open University (if, like me, regular attendance is not an option). Here’s a post I wrote previously about studying with the help of the DSA.

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Conference presentation on wheels

As you are probably aware.. I am awaiting the results to my masters dissertation, and trying to write a paper during my Brain Moments between the bouts of more usual symptom-induced brainlessness! The research I conducted for my dissertation is very important to me as I wanted to conduct something that could prove useful to my fellow CRPS patients. And I was ever so pleased to get the opportunity to share my research, my knowledge and my enthusiasm with fellow research students at a recent conference: the Wessex Branch of the British Psychological Society Annual Student Conference 2013 which was held at Bournemouth University on the south coast of the UK.

The conference is open to undergraduate and postgraduate researchers, and the organisers went through the applications, allocating students to either make an oral presentation or a poster presentation of their work.

I was allocated a time slot amongst the afternoon presentations. All of the postgraduate research talks were helpfully timetabled to be presented in the same lecture hall. This was wonderful as so many of the postgrad’ research projects overlapped in some way with my own, so I was looking forward to meeting other researchers with interests that intertwined with mine.

First hurdle: Planning how I was going to get through the day and, of course, the travel arrangements were a massive part of that. I worked out that as it was a weekend, and if I took my wheelchair with me, I could drive there and get through the day as coherently as possible. The problem was that I did not know how much the pain or the dysautonomia would flare and so I had no idea whether I would be safe to drive home again afterwards.

On a scale of one to batshit

This was solved my my outstanding Local Friend who offered to drive me, my wheelchair and my collection of pain management paraphernalia, to and from Bournemouth Uni’. Wow! That sure made a difference.

The usual concerns of accessibility were all answered beforehand because the university has an outstanding website with comprehensive disabled access information. All I had to do was check which building the event was in and loh!, I could access all the information I needed to plan my levels of needs for the day at just the click of a button. I was super impressed. 😀

I may have puzzled some of the attendees in my usual oddly disabled way, of course! I walked in pushing my wheelchair, then I left it to one side to get a cup of tea and chat with a couple of random friendly faces about research stuff. 🙂  I wheeled the chair into the main lecture hall and went to sit on a seat, realised that the wheelchair would be far more comfortable with the seat cushion and turned back round to go and sit in it for the official start and introductions. By this point there may have been some attendees a little bemused by the miraculous walking wheelchair-lady, hehe, I am a living education, me! I probably only puzzled them further when I got up and walked out to the foyer during the break to grab another cuppa! But that was a mistake on my part as the pain levels began increasing more rapidly after I did that so I became wheeled for much of the rest of the day.

The presentations were great, some of them were great fun, too. Two undergrads stood out amongst the various presenters, one for their sheer enthusiasm and knowledge on the subject, as well as a creative way of engaging the audience and getting their main initial point across, the other for an intriguing study which resulted in an unexpected outcome which opens up the possibility for further research into a very cool discovery. (I’ll write about this last one sometime, the researcher has very kindly sent me a copy of the main details and some related research links).

The afternoon was extra fab as the other researchers’ chosen areas overlapped with my own, and postgrad’ researchers tend to be pretty engaging simply owing to their interested immersion in the subject matter. I was scheduled 4th in the small lecture hall at 2.15pm – so thankfully not during the graveyard shift when conference attendees tend to drift off as a result of information overload! Although, to be honest, no postgrad’ was going to nod off in there as we were all so interested in each others’ work. 😀

I’m not quite sure when I stopped fretting about presentations. I used to go bright, neon, ear-glowingly red. I had also learnt never to hold a bit of paper or to accept a plastic cup of water as anything in my hands would get shaken with the nerves! Maybe it’s age, maybe it’s familiarity with and enthusiasm for the subject matter, or maybe it’s as a result of learning to be ‘me’ in the face of whatever this disability (or disabilities I guess) throw at me. Maybe it’s all of them. Who knows. But I wanted to present that research, I was proud to be there, I wanted the listeners to be interested, to have their minds intrigued by what I was talking about, to take some smattering of knowledge away with them that day from my fifteen minutes chatting to them.

I was in my wheelchair for the talk. I hadn’t drunk enough fluids during the morning and my body had got a bit near-fainty, so sitting down meant that my blood wouldn’t pool as much so I should make a little more sense (hopefully 😉 )! So I wheeled on over to the front and got my memory stick plugged into the lecture halls sci-fi console!…

Sneaky pic' through the door glass by Local Friend!

Sneaky pic’ through the door glass by Local Friend!

I talked about CRPS, what the letters stood for, and what the words mean, why it’s more complex than that. I explained CRPS in basic systemic terms. I nattered a little more about the neuropsych’ aspects as my audience was comprised of psych’ research students so I knew they’d be interested. I showed them the McGill pain scale, and told them what my research was about, why I was conducting it. I nattered away and wished I had more time. I could so easily have gone over time. Postgrad’ research is a whole different kettle of fish, as an undergrad’ I would still have been nervous, apologetic and glad when it was over. As a postgrad’ I was earnest, enthused, and cramming in as much as I could in an accessible manner! Oh I like this change. I like this new daring. More please! Hehe

What a lovely audience clapping at the end of it. How lovely of the undergrad’ helpers to tell me that they found it really interesting and wished that they could have listened to me for longer. Thanks girls, x

Immediately after the presentation, notes still on my lap, flask of water clutched between my knees!

Immediately after the presentation, notes still on my lap, flask of water clutched between my knees!

My Local Friend had arrived while I was presenting and I was too hurtee to face getting into the car. I needed some physio’. The rep from the student engagement team of Bournemouth Uni was superb in her support all day long. A lovely lady determined to make the day the best it could be, she kindly offered me an empty lecture theatre where I could do some stretches and physio’ in. So I wheeled off into the big empty space, stretched a bit, ate some chocolate (totally required, right?!) and practiced some Tai Chi whilst my friend sat halfway up the seating area taking random piccies of my physio’ oddness!

Conference, Tai Chi

Seeing as I’d stayed later than intended I was encouraged to linger long enough for the awards ceremony. I hadn’t even taken on board that there would be awards, I was thrilled enough with the day as it was, but what a lovely way to bring people together at the end of the day and relive the presentations to vote for our faves.

I got my certificate from the British Psychological Society for being a presenter that day. I also got surprised when I was called up to receive the award for 3rd place in the post-graduate presentations. Not bad for my first ever research presentation, eh?! Yay!

That was my conference on wheels. My adventure made possible thanks to my crazy chauffeur who decided that giving up his Saturday to drive me to and from was a just cause. Thank-you Local Friend!

And thank-you Magic Dude for looking after me when I got home after my long day, x

I’ve been asked if I would present again next year! Wow, fabulous! I’m not sure if I’d be eligible, mind you, as I may not be a student by then (depending on whether my brain can work through the complex organisation of PhD possibilities in time), but if they still want me then I’ll be there. Somehow. I’ll be there. 😀

If I could do anything as a Health Activist…

That’s an easy one to answer, but a tough one to precipitate.

Awareness. Knowledge. Informed decision-making from informed discussion with our medical practitioners.

The problem…

..how to increase awareness of our complex condition, (including family/friends/employers and, crucially, medical practitioners).

Time is of the essence with any new development involving CRPS and Dysautonomia. But time slips by as we work to source information and share it with our doctors.

If I could do anything as a Health Activist it would be to provide a source of gathered knowledge and research data to back it up, that’s why I created and continue to update my What is CRPS? and What is Dysautonomia? pages (and there’s even research back-up on my Health Benefits of Tai Chi page). 🙂

Some of the data which we want to share does not exist yet. The demographics we talk about a lot amongst ourselves (late diagnoses, lack of support from our doctors and so on) is not backed up with studies, so it is dismissed as anecdotal. We need scientific evidence to back it up.

So… gathered knowledge – I’ve started that here on this weblog, I’ve got more info and research references to the ‘What is..’ page as soon as I can. Plus there are several of us CRPS patients discussing a potential website. So I’m always working on this aspect.

And…. fill in the holes regarding some of the demographic data – I’ve just completed a post-grad’ piece of research which covers some aspects of this, (an online paper still to write when my brain hangs around long enough at a time to do so), and wouldn’t it be rather cool if I could do more? Any universities want a part-time (preferably mostly distance flexitime) disabled health psychology PhD student that they’re willing to fund? (Thank-you Open University for the chance to apply for a couple of available funded slots, but I don’t know that my health could take a house-move to Milton Keynes just at the moment so I’m having to look for more local options and then weigh things up, x)

As you know, I tend to set my heights crazily high and then just see how far I can get. Who knows what the future may hold? Maybe not masked crusading, but being helpful would be good!

Pretend Superhero

A bit of silliness always keeps me going! 😉

x

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

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