CRPS – Frequently Asked Questions

I help out as part of a multi-disciplinary admin’ team in a couple of online support groups. One of the groups has had such a fast increase in membership that we found ourselves trying to keep up answering recurring questions a lot of the time. As we admin’s are also working around our on CRPS, co-morbidities, flare-ups etc we found that the amount of repetition required was taking more time than we could manage to function in per day.

So, the plan was to create an FAQ with a list of themes with various links, snippets of information and so on, so that instead of repeating ourselves and posting loads of information every time the questions came up we could instead say “hey, that’s in our FAQ, feel free to go and have a look”. And it seems to be working well. Now a few lines to direct the questioner towards the FAQ enables us to share lots of information without compromising our own healthcare in the process. Organised, or what?! 😉

But that’s just within that one support group, and until my peers and I get the charity website up and running there’s nowhere else that our fellow patients from outside the group can access these links. Plus even if the file gets shared it’ll soon be out of date as new links are added all the time. So I’m going to add the FAQ here in the meantime. My fellow admin’s are working on other areas to add more info’ and links to what I’ve gathered here so far and I will make sure that it all ends up available online (the charity webbie is being created so we’re getting there slowly despite the health restrictions).

I’ve just uploaded the FAQ. It is not finished (with this condition is never will though of course as knowledge is always moving forwards) and it is a bit rough and ready at the moment, mostly still in raw links (some of which aren’t working as links at the mo’ so for those ones just highlight the website address, right mouse click ‘copy’, and then right mouse click into your browser address bar and right mouse click ‘paste’). I’ll pretty it up when I get to but as I have a long CRPS advocacy To-Do list at the mo’ I decided that prettifying can wait – it’s more important to get this info’ out there and available.

Here’s the new page:

CRPS Frequently Asked Questions (FAQ)

As always, any suggestions for additions, feedback etc is always appreciated. This is to help our fellow patients so I always welcome input.

Much love from me, x

Keep a Pharmacist in your health loop

I had to get a blood test today, so I collected my prescription from the nearby pharmacy at the same time. Whilst I was in the pharmacy waiting, I got called in by the pharmacist for a chat about my meds and supplements. Awesomeness!

It was great to chat with someone who really comprehends the problems we have with meds. I have mentioned it before and I’ll say it again:

Include your pharmacist in your health loop, involve them in your decision-making processes – they know more about meds and med combi’s than anyone else and they are invaluable to patients like us who are juggling multiple health issues with multiple internal systems and therefore constantly having to Sherlock our symptoms vs side effects, figure out meds, supps, nutrition etc for all of our various health issues in a way that they can happily co-exist with each other as treatments.

A good pharmacist is worth their weight in chocolate!

There were no concerns about my meds but I’ve decided to come off the magnesium supp’s. The mag’ was for the progressively worsening motor issues I had thanks to the first ANS stabiliser which I was one for over a year. My current stabiliser is way better for the motor issues (inc. spasms, jaw clamping, twitching etc) so to avoid in-taking too much mag’ I’m coming off it to see how the motor issues are with the more central-nervous-system-friendly ANS stabiliser that I’m on now. Good change. Thanks Ms Pharmicist. You rock!

Blood test thumbs up

UK peeps: This is an NHS thing so if you haven’t had a meds check-up for a year or more, ask your pharmacist about it. It’s well worth it. Even if everything med’-wise is tickety-boo, it’s always reassuring to know that it is.

Lotsa love from me,

x

Ankylosing Spondylitis on the McGill Pain Scale

Recently Ankylosing Spondylitis (AS) has been found to involve neuropathic pain. A question from a fellow patient about the McGill Pain Scale score for the condition resulted in me pottering off to see what research had found regarding AS pain scores.

A recent research paper that involved a small AS sample group of 17 participants who completed the McGill Pain Questionnaire (MPQ). The MPQ score for this sample group was 28.

Please note that with such a small sample group this is a ‘ball-park’ figure for reference only.

I’ve added this to my MPQ diagram below, in case this helps any other AS patients out there to explain the pain levels they experience on a day-to-day basis.

McGill Pain Index, final 2

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The main objection you are likely to hear when showing this pain scale to others is that pain is subjective and so cannot be scientifically compared, so here’s some info’ about this scale…

There was no scale of the sort for many years because yes, pain is subjective.

The use of the basic 1-10 pain scale is simply to compare our own pain to our own pain – it is only relevant to us as individuals because only we know a) what pain we are experiencing, and b) what the numbers on the scale represent to us pain-wise.

The McGill Pain Scale (named after the university it was developed at) was introduced in the 70’s by Ronald Melzack and Warren Torgerson and was initially doubted by his contemporaries for the same reason. Of course no scale is perfect, but the MPQ has been rigorously scientifically tested over and over since it’s creation and has actually proved to be scientifically very robust indeed. (There is also a short-form of the MPQ available (S-F MPQ) ).

The reason it works is that it involves asking many patients (so it’s not a small sample group) and they are not asked to just name a number in a subjective way…
The MPQ asks various questions involving both numbers and words that are descriptive of pain. The words used to describe pain have been found to indicate different levels of pain when the similar groups of words keep cropping up in the answers. The set-up of the MPQ is complicated in that it cross references all of the answers with each other to assess things like consistency, but it is designed to be easy to use and easy to score. The complexity used has been found to be very robust for a general pain score.

This scale is a good guideline, therefore, for our understanding of condition pain levels in a general sense.

So yes, pain scales as a whole are still as subjective as ever. But the McGill Pain Scale is a reliable way of comparing conditions as a whole.

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References:

Melzack, R. & Torgerson, W.S. (1971) ‘On the language of pain’, Anesthesiology, Vol. 34, pp 50-59

Melzack, R. (1975) ‘The McGill Pain Questionnaire: Major Properties and Scoring Methods’, Pain, Vol. 1, Issue 3, pp 277-299

Melzack, R. (1983) ‘The McGill Pain Questionnaire’, Pain Measurement and Assessment, pp 41-47

Melzack, R. (1987) ‘The Short-Form McGill Pain Questionnaire’, Pain, Issue 30, pp 191-197

Melzack, R. (2005) ‘The McGill Pain Questionnaire: From Description to Development’, Anesthesiology, Issue 103, pp 199-202

Wu, Q., Inman, R.D. & Davis, K.D. (2013) ‘Neuropathic Pain in Ankylosing Spondylitis: a Psychophysics and Brain Imaging Study’ in Arthritis & Rheumatology, Vol. 65, Issue 6, pp 1494-1503

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Dysautonomia awareness month

Oh how ironically this month began for me! Here we are in the awareness month for autonomic dysfunction and there I was, on the last day of September, listening to a doctor tell me that I had not been clearly diagnosed with any sort of autonomic dysfunction, even though the whole reason I was there was to discuss my third type of meds specifically intended to help stabilise my Autonomic Nervous System (ANS)! <headdesk> !
(She wasn’t my usual doc, I’m off to see my doc instead in another week or so).

Yep, you didn’t just imagine that paragraph, I really did go for an appointment about my latest ANS-stabiliser med only to be told that I don’t have any official autonomic dysfunction!

I have CRPS… that in itself is a form of autonomic dysfunction (Dysautonomia). (See my description of CRPS including the ANS pain amplification here).

Current research shows the extent of autonomic involvement in CRPS. (See Schwartzman’s research paper link on this page), and indeed a lot of autonomic issues have popped up to keep me company on my journey through life during the last few years.

I wrote a post about how SSRIs can help to stabilise the ANS, about how jaw clamping can be a side effect owing to resulting dopamine suppression and how it might be worth me trying a mixed SNRI as they function as both an ANS stabiliser and reduce dopamine suppression… Well, the doc I saw said that she only prescribed it because I asked for it!

It is true that I want a doctor to listen to what I have to say, but one that prescribes whatever just because I ask for it? How responsible is that? I’m not medically trained. I’m an expert patient – I know a lot about my own condition, and I’m trained in research so I know how to trawl the journals, how to read things with a pinch of salt and how to slowly build up a potential picture, but I expect to be able to take information and knowledge with me to then discuss them with someone who is medically trained and can offer further insight on the information I’ve gathered. Not blindly prescribe me meds without any discussion at all and without any knowledge of my health issues.

References to my having ANS dysfunction should be throughout all my notes of the last few years and the advice of the consultant ties in exactly. However, lack of awareness of autonomic dysfunction is the issue here…

We have here an example of a doctor who plays it by the book, which is not to be sneezed at on it’s own, but this doctor will not see a pattern in a patient’s notes and does not want patient involvement in higher thought processes. She wants to see a clear diagnosis and if the consultant does not state the obvious she sees it as non-existent until the consultant does so.

She has advised me that she does not want to hear me use medical anacronyms, and she does not want to hear about dopamine. She stated clearly that..

“We are here to treat patients and symptoms. That is all. I only want to hear about side effects, I do not want to hear you talk about dopamine.”

Oh silly me, there I was interested in a treatable cause rather than an endless treating of symptoms and side effects instead. *sigh*

There are some times when you stand up for yourself, and I did. With tears in my eyes that did not fall I pointed out very calmly that it is difficult not to mention dopamine when it may be the whole reason that I have jaw clamping issues – we cannot treat the cause if the potential cause is not to be mentioned or discussed. I also explained that I am not stupid, I know how to read research in a sensible unbiased manner and have not just grasped one paper and run with a concept.

I got a tight-lipped ‘look’. She stood up to indicate that it was time for me to leave. I had been told. I knew I would get nowhere with this doctor, even talking sense was not allowed because it was not in her rule book for patient behaviour. So I left…

…and promptly burst into tears in the corridor outside. Ah yes, there are times when you stand up for yourself, and times when you keel over. Both in one day, eh? Classy!

Do not research for causes or use medical terms

After sobbing my heart out quietly in a sideroom which a passing nurse had kindly offered me, I eventually got to a stage where I thought I could walk home without nearly passing out. (No ANS issues, haaaa!) And by the time I left I had formulated a plan.

The Plan:

1) Never to see that doctor again
2) To catch up with my paperwork and get my notes from the autonomic consultant because his letters left so much of our conversation out (and therefore won’t be in my general notes)
3) To ask my doctor to fax the consultant dept’ asking The Question i.e. please can you put in writing to what degree this patient had autonomic dysfunction at the time of her appointment?

The reason for #3 is that I have been through several years of autonomic-related appointments… respiratory (for breathing techniques and acupuncture), cardiology (for ECGs and more), culminating in the neuro-vascular autonomic specialist tests last year and the related consultant appointment this year, since followed by a hypermobility specialist and soon to be followed by a jaw-clamping (TMJ) specialist. If I risk seeing a doctor who doesn’t believe all of that despite the list of my medical adventures, then I need a bulletproof statement of illness from a specialist to bypass such silliness and allow me to have a sensible and relevant conversation instead of going back to square one again.

Don’t forget:

– Always get copies of your hospital notes
– If your doc’ doesn’t respect you and/or won’t work with you – change doctors

The autonomic consultant didn’t state the obvious because, to him, it is obvious. He and I both know it is already in my notes and besides – I’d been sent to him for specific testing to figure out what exactly was going on with my ANS, not to find out if it was wonky or not, we already knew it was wonky.

If the doctor I saw had been aware of autonomic dysfunction then all the info’ is there in my notes for her to see. That is how important raising awareness about this condition is. Because without that awareness patients can be left hanging without appropriate support, discussion and treatment for their condition. And, like me that day, they can feel so very exhausted from having to fight for every little basic step when they really shouldn’t have to.

Knowledge. Awareness. It really does make a massive difference to effective appropriate care.

To each of us patients, to our treatment, our quality of life, our ability to concentrate on our life instead of endlessly trying to explain to a doctor who draws lines in places where there would be no need if they were aware of some important basics.

And to each doctor it would save them time, and help them to do their job more efficiently and effectively. Not to mention reduce the number of angry/weepy/distressed patients they have to deal with. Plus it would enable treatment of some of the causal issues instead of the endless roundabout of treating symptoms and side effects without looking at the ‘why’.

There is no need for the kind of damaging appointment that I experienced.

Awareness needs to be raised to avoid this kind of damaging event which can detrimentally affect patient health. Bear in mind that living with autonomic dysfunction such as POTS has been likened to the quality of life experienced by patients living with chronic heart failure. Yes, the kind of damage that can be done through lack of awareness is frighteningly massive.

I am able to go to another doctor, I have years of self-advocacy experience behind me and more research papers than you could wallpaper your house with. But what about our fellow patients who are new to this? Just learning? Still trusting what all General Practitioners say instead of having enough hard-earned know-how to spot which doctor ‘gets it’ and which doctor could be damaging to work with?

This month is Dysautonomia awareness month for good reason. It’s not for heart-warming feel-good vibes. And it’s not some sort of my-illness-is-worse-than-other-illnesses thing! It is simply a response to a dire need for greater Dysautonomia awareness.

Awareness in patients
Awareness in doctors
Awareness in family and friends

Awareness solves a lot of potential issues before they even begin.

So if you get the opportunity, please share some info’, here’s a few ideas for links you could share as well as links to some other ideas about how to get involved…

Dysautonomia awareness ribbons from DINET on Facebook which you can use and/or share

Dysautonomia SOS basic info’ link to share

Dysautonomia International are having a tweet-a-thon

Dysautonomia International map of events to see if there’s one near you, (you can choose what is shown in the drop-down box at the top, at the time of writing there are only events listed in the USA)

Other ideas and links listed here from Dysautonomia International

Other ways to get involved via Dysautonomia SOS

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome: A very informative video by DINET about living with POTS. As many forms of autonomic dysfunction involve the same symptoms this is a great video to watch whichever form you have as there is lots of information and advice included.

What is Dysautonomia?

Dark blue for Dysautonomia (Autonomic Dysfunction)

Dark blue for Dysautonomia (Autonomic Dysfunction)

Thank-you, xx

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Thoughts on the international disability access symbol

There has been some talk of late about the international symbol of disability access…

accessibility

We all recognise this, right?

It’s a symbol that everyone can understand without the need for language. We all know that this wheelchair symbol does not mean ‘us’ unless we are disabled. So these symbols get used in many countries to point out disabled-specific facilities such as parking spaces, wheelchair accessible toilets, alternative doorways for the disabled, safety ‘shelter’ areas in multi-storey carparks for those who cannot take the stairs in an emergency, and so on. We all know what this symbol means – there is no confusion over where the disabled facilities are.

Nothing is ever that simple, however.

The universality of this symbol (metaphorically speaking, although aliens may well need disabled access too 😉 ) means that over time the association has been less about the facilities it was intended to represent and more about the ‘disabled’ it is now generally (mis)understood to represent. The repeated associations every time we see it mean that the symbol itself has affected our concept of ‘disability’ – Disability means being in a wheelchair. Being in a wheelchair means that you are disabled.

But the reality is that only 8% of disabled in the UK use a wheelchair.

Yes. You read that correctly…. 8%

So, yes, that means that 92% of disabled people in the UK are not in wheelchairs, and yet the symbol is now so entrenched within our cultural understanding as representing ‘the disabled’ that it’s hard, for those not already in the know, to figure out what on earth those ‘disabilities’ might be.

Assuming that a symbol for a whole population such as ‘the disabled’ is acceptable when it only represents 8% of that population, then other 8% alternatives should also seem completely acceptable to us, right??

Let’s see now…. well…. Age UK’s 2013 report of the UK 65+ age group shows that…

8% are black and minority ethnics

8% have no religion

8% have definite major depression

8% have gone without food to buy christmas presents

an estimated 7% have faecal incontinence

So, by the current disability symbol way of working we could safely represent all older people living in the UK as black and ethic minority atheists with mental health issues, a mysteriously pooey scent and a penchant for gift-giving.

Right??

Um.

No.

Because the disability symbol was never about representing “disability”, it was about letting people know where the disabled facilities are.

So what does this mean for the other 92%? And what about the part of the 8% of wheelchair users who can stand for a time? Indeed keeping muscles from wasting (atrophying) is oh-so important for those of us lucky enough to be able to do so. What are the responses from the general public when a wheelchair user walks to the back of their car to get their wheelchair out? Or when someone on crutches parks in a disabled spot? Or when someone who ‘looks’ healthy parks in a disabled spot and walks to the shops? What indeed? How is the wider population able to interpret this as within the scope of disability when they have the concept of the 8% in wheelchairs as representing us all?

How indeed.

The UK description of disability, as per the Equality Act 2010, is that you are disabled “if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

It is quite clear from this that if you can walk but your lack of arms stop you reaching your cereal in the morning – you are still disabled, if you can walk but you have a tendency to pass out at any point – you are disabled, if you can walk but the type of brain injury you have that means you can’t process information for long without becoming incapacitated…and so on. This description is what can’t easily be put into a symbol, even though it needs to be to redress the erroneous cultural belief that has resulted from the current symbol.

Ask anyone in the 92%, or in the part of the 8% who try to walk when they can. Ohhhhh we’ve got stories we could tell you! About people shouting at us, and banging on our windscreens angrily, and kicking our outstretched painful legs as they walk past. Oh yes, we could tell you so much about what it’s like to not live like the symbol and still be disabled. It’s not pretty.

Concepts got muddled about with the 2012 Paralympics. The disabled in the UK are now fairly neatly defined as either heroes or scroungers. The heroes put on fake legs and win medals, or wheel to victory, or do some kickass volleyball moves whilst sitting on the floor. They officially rock! So the public ‘know’ that ‘disabled people’ can do things, too. The ones that claim benefits are therefore seen as shirking and not trying hard enough. The concept of being disabled as a result of being chronically ill was left out of the politicians’ welfare re-jig and the resulting media onslaught, and only seems to turn up in single case stories in the media once in a while. As is how limited Paralympians can still be in their day-to-day lives. But this conversation can lead many off track. The welfare issue is indeed an issue. A massive one. And it needs to be addressed. But this post is about the symbol that has mistakenly come to represent disability itself rather than disabled facilities. There is talk of changing it to something more positive, but the core issues never get raised. Talk tends to be within the same confines. A mere variation on a familiar theme.

In New York they came up with this…

new NY disabled symbol ..and yes – look at that wheelie go! They are a person, they are living their life, they simply happen to have wheels instead of legs, right?

Uh-huh, you’ve got it! This is all well and good, but it doesn’t address the fundamental perception that disabled people use wheelchairs when, unknown to most people, a massive 92% of disabled people are not the wheelies they are assumed to be. And seeing as 1 in 5 people in the UK are disabled in some way (and that the population mid-2012 was 63.7 million)… that means that 12.74 million people in the UK are disabled, of which 11.72 million do not use wheelchairs.

If you want to redesign a disabled symbol you can ask people what they think, but most people think a wheelchair is representative of the majority. You can ask disabled people but, you know what, we’ve got used to the disability symbol, too and though we want to not be shouted at in public when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc it is hard to think outside the box when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc!

How many of us knew how many disabled people actually use wheelchairs? I didn’t. Until I read the Papworth Trust’s 2012 meta-analysis report.

So…. to create a new symbol – look at the facts, look at the figures – who are you trying to represent in the symbol? And by ‘who’ I do not mean a generic stereotypical ‘who’, I mean what types of disability need to be included to make public perception more accurate? Because we have to bear in mind that the symbol also affects the way people perceive disability itself. Personally I’d like to see something like this become the norm…

Disability symbols

It clearly shows that disabilities vary and, crucially, that they are not always visible. It could mean less distress for those of us who do not fit the minority stereotype, and it could improve many many lives by doing so.

One concern might be that ‘anybody’ could then park in a disabled bay, but we still cannot park in a disability space unless we have passed the criteria to be awarded an official parking badge, and the alternate symbol may reduce the amount of hostility and flak the walking disabled have to deal with. Similarly, disabled bathrooms are blatantly designed for wheelchair access, but also very useful for head injured people who need less processing to deal with or blind people who just don’t feel like sussing out a new public bathroom layout and would find it easier to have everything close to hand for example. ‘Disabled’ covers different things which the current minority stereotype doesn’t, and a new multi-symbol could help adjust perceptions to something closer to reality.

What do you think?

x

Awareness ribbons

Remember that post I wrote ages ago about how  many ribbons can happen to represent each of us chronically ill folk?! Well, I’ve got some more to add to my ribbon prettification list now!…

purple-ribbon I now get a purple ribbon for migraines. I like purple! 🙂 But not migraines 😦

Each ribbon tends to stand for multiple conditions and I didn’t realise until recently that this colour also covers my throbbing-head-flashy-light-stagger-away-from-all-light-and-noise issues!

I also didn’t realise that my tendency to migraine over and over (once I’ve had one migraine I’m reeaally prone to them for several weeks afterwards, and the longer it’s been the safer I am) is what is referred to as cluster migraines. I found out during one of my UK disability assessments. So I guess really I should go all out and overboard with colour and add the recently created ribbon for chronic migraines…

Chronic_Migraine_Ribbon_2

Ahhh, instant prettification, right?! 😉

My awareness ribbons

Pretty!

x

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

“Useful Links” page for fellow patients

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For extra info’ and resources to help us improve our self-advocacy I have a Useful Links page. It includes links for research papers to show doctors, information to share with family and friends, organisations to contact for more information, wallet cards, autonomic physicians list, and more.

I will continue to add to this page over time. If there is anything that you would like to see added or any suggestions for links that could be helpful to other patients then let me know as I want this page to grow so that it can be as useful as possible.

Much love to you all from me,

x

Useful Links page

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

Happy 1st Birthday to the Elle and the Auto Gnome blog!

Wheeeeee! A whole year…already? Wow, time flies when you’re having fun! And it is fun as well as heart-warming and indescribably amazing being on this blogging journey.

Banner, Jan, Blog's 1st birthday

Yep, it really does say One’th! 😉

I created this blog to provide information for my fellow patients on CRPS and the rarely ever spoken about overlap with Dysautonomia. I had no information for so many years, I didn’t want other people having to go without such basic and crucial information for understanding, working with and treating their condition the best we all can. Not to mention to teach those of the doctors which we meet that are less endowed with knowledge and understanding of our complex conditions than we would prefer, (and to share some useful research papers to support you in the passing on of information). xx

The blog is always ‘becoming’… There’s always new research getting printed and then useful bits of info’ to be added into my ‘What is CRPS?’ and ‘What is Dysautonomia?’ pages. So that’s ever ongoing and ever changing as the amount of research happening around the world is phenomenal. I’m a bit behind at the moment.. 2012 was a stupendous year for CRPS research in particular, especially in tying together different aspects of the biological experience, (if you have systemic CRPS then check out Schwartzman’s superb paper on my ‘Useful Links‘ page for a very handy paper indeed).

The blogging part was the bit that was new to me. I wanted to share experiences, knowledge and have a chuckle along the way, too. Who wants to read (or write) serious things all the time? 😉 And seeing as I have a laugh at the ridiculousness of the condition at times, or at situations I find myself in, or just anything really (tee hee) I wanted to share my upbeat lighter tendencies as well. Seeing as silliness is part of how I live, it’s also part of my blog too 😉

I guess you must like it as I’m utterly blown away by the visitors to the weblog. My thanks to all of you for the 9,143 visits in my first year! Wowsers!

The most popular separate page this year has been ‘What is CRPS?‘. I am so so thrilled that it is of use to you.  And I’ve been really pleased to hear that some of you have been able to put it to additional good use to show other people (including families, doctors and teachers) to allow those around you to grasp a better understanding of your condition and what you are dealing with each day. My intention in writing the page was to be useful, and it is most gratifying to hear that I have been able to help in some way. For the future: I hope to upload a downloadable version for you that is less bloggy and more professional so that you have a printable format as well. That’ll have to come after my studies are complete, though, so…after March sometime, xx

The ‘What is Dysautonomia?‘ page gets a fairly high number of visits, so I really hope that it is also proving to be useful. For the future: I hope to add more info’ from journal papers as they crop up and also create a downloadable file for this too. Once again, it’ll have to be post-studies, though, so hopefully I can get onto this for you for after March, x

There is so much I want to write about in the coming year. That little notebook I have mentioned before is chock-a-block with notes to myself about things to get online! Some are very practical, some are experiential and some are just for a bit of fun of course. I have found that really I tend to write about what occurs to me in the moment, or what someone has asked about, rather than refer to anything in the notebook to get me started. There’s so much whizzing round my brain that’s there’s never a problem with finding things to write about, it’s more about pinning myself down to write about just one thing! 😉

One of the things that has continually both astounded me and made my heart feel all warm and happy is the constant additions of flags to the list of countries on the blog’s ‘dashboard’. To receive visitors to the blog from all around the world has made me feel more connected, made the world seem that much smaller and pretty much resulted in a permanently happy expression with a tinge of disbelief! Still can’t quite get my head around the idea, I have to look at all the gorgeous flags to convince myself it’s really true. Wow, it’s so good to ‘meet’ all of you.

2013-01-29, Blog visitor map, thank-yoooouuu

For those of you who have so far felt less confident about posting messages, comments, questions or natter on here, let me reassure you that I lovelovelove the contact, the feedback, the comments, the ideas, being able to help in some way, meeting new people. The bottom line for me is that I wanted to be useful, to make some sort of a difference, but you don’t have to be a fellow patient to comment on this blog. There are readers out there with similar and overlapping health issues and readers with different health issues to me, but there are also readers out there who don’t necessarily have any severe health issues, too. Making a difference can be as specific as passing on crucial medical info’, and general as how I keep positive or as simple as making someone laugh 😀 So don’t ever think I will be less interested to hear from you, you are all part of what has kept me blogging and I value input and natter from all of you, xx

I have met wonderful fellow patients, one of whom surprised me by writing a poem about the blog, (yep, that’s you lovely Carly 😉 ), and every single one of you who I’ve met here and on the Facebook page astounds me with your strength, your humour, your determination to understand your conditions.

I’ve also recently met fantastic fellow CRPS bloggers Caf and Hope when we were all attempting the WEGO blog challenge in November. I have some friends I’d already met who, as it turned out, also blog…  like Isy Aweigh who seriously knows her CRPS stuff, and Sylvie Ghysels who is an amazing multilingual gal who is working hard at getting CRPS info’ out to the French-speaking patients among us. I love and admire them for what they do, and cheer them on loudly… <waves pom poms enthusiastically> ! And of course I’ve gotta give a heads up and thank-you to Michelle for being encouraging and supportive as I endeavoured to get the hang of blogging, I came across her fabulous Dysautonomia blog when I was looking to see whether my blog was a bit too unusual! I found out that I’m in really good company so I’m gonna remain this way! 😉 Not forgetting all of the fellow bloggers who follow this blog, thank-you all so much for your support, as I’m buried in studies there are still some of your blogs I haven’t been able to visit yet, but rest assured I’ll get there, xx

During this first year of blogging, I have written some silly posts, got a bit writer-y and heartfelt in a couple of posts, written a poem or two, taken some daft pic’s, talked about studying whilst disabled, mentioned my love of Tai Chi physio-ing a few times,…. there are all sorts of main posts I could pick from the year, but as there is a Full Archive that you can refer to I shall instead pick out…..

Some key posts for fellow patients from my first year of blogging:

A Jar of Joy! – a way to store our joys and re-live them to ease the next New Year struggle

Always get copies of your hospital notes

The weirdest thing about my health…  – the variability of my conditions

The mystery of the balloon-inducing insects  (oedema, swelling, insect bites)

McGill Pain Index, CRPS and Fibromyalgia

British disability benefits, shockingly shameful behaviour

What I take with me to my doctors appointments

Experiencing cognitive change

Temporary cyborg and wearer of an invisible (purple) cape – my visits to cardiology, & what a tilt table test is

Why I also live in Cyberspace

This Too Shall Pass

Tick…Tick…Tick…Tick…Spoon!   – The infamous Spoon Theory and link to Christine Miserando’s original creation of the theory – great for helping others to understand our limitations.

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And as if I needed any more motivation to keep doing what I do, here’s Carly’s poem that she posted to my blog page on Facebook and which promptly made me cry (in a good way!). This is why I share info’ and blog and why I have no intention of stopping…..

“Why is it I feel the way that I do?
Seams coming undone from being sewn with wet glue.
Piece myself together each time, til the end,
just to break apart and have to start from the beginning.
Living in this world you can feel so alone,
especially when the pain burns down through your bones.
It seemed like no one else could ever truly understand,
until I reached out online for a helping hand.
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“The friendship I found was never expected
searched “ice/CRPS” and then I connected
To a world of support that made me feel right at home,
lead by a fearless, silly woman… Elle and the Auto Gnome.
Her wisdom and joy have brought me such comfort,
and although we’re new friends I already love her!
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“The way she takes all of the negative things
and turns them into positive dreams!
She challenges herself and although she may fall
She gets back up and conquers it all!
Through all of her strife she never stops offering
all the help she can give to others in suffering.
What why this woman’s a hero and more
and her kind hearted spirit I’ll forever adore!”
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                                                – Carly Goebel, Oct 2012
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