Neuro-vascular autonomic consultant in London

Okay, so April has been manic. Flare after flare, simply owing to the amount of appointments I had to get through. One of these was the long awaited autonomic consultant appointment at St Mary’s neuro-vascular department in London.

Prior to the consultant appointment I had to go through a battery of tests. This took two days (during last November) and I was a wreck by the end of it, but I was really pleased that I did it!

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Day one:   Get wired up with a portable monitor of blood pressure and heart-rate.

I was to wear this for 24 hours.

Every 20 mins it would beep at me and the arm cuff would start inflating to take a reading. If I was doing a physio’ walk I had to stop and stand still as it did this, but most of the time (of course) I was sitting or lying down anyway. Every time it did this I had to scribble down my symptoms at that moment i.e. extent of dizziness, nausea etc. So I had paperwork and a pen to hand at all times and after a few hours of this it was getting pretty tiring. My brain fogs up and needs to be left alone to recover. Asking me to get thinky and writey every 20 minutes is a crazy request. But I’m a stubborn ole whatsit so I did it, of course! (And paid the price, but hey, that’s what happens at appointments, eh?)!

I also had to do one test where my blood pressure and heart rate were monitored whilst I was lying down but cycling with my legs (trying to keep an rpm dial in a steady position). More on this later.

We went straight to the hotel room after the appointment, (we even got minty chocolates on our pillows, ooooh)!

And this was one of the cheaper hotels.
London, baby!

In addition to the every-20-minutes lark there were also specific tests I had to run myself. They were set for certain times of day. Things like lying down – take blood pressure (bp) and heart rate (hr) – then sit up – take bp and hr – then stand up – take bp and hr. Readings after eating. Readings after walking. Readings after climbing a flight of stairs. Readings before sleep, Readings after waking. Readings. Readings. Readings.

Magic Dude was on hand to get me everything I needed to get through the evening. Hot water bottle and painkillers were also invaluable!

I cannot describe adequately how exhausting this is for someone already trying to cope with problematic chronic conditions as well as the aftermath of a long ride in the car as a passenger and an appointment involving walking/sitting/talking. But while I was up doing one of these tests I got Magic Dude to take a piccy of the tech. Some kindly soul had knitted a monitor bag which matched the colour of the arm cuff, awwwww.

So getting out of the hotel room is a toughie. We made it round the corner to a local Italian. The manager of which was a real poppet when I explained why I was using a second chair to put my legs up. Bless his cottons, “You can rest as long as you need to” he said, even after we’d finished eating and the tables around us were beginning to get occupied. What a darling.

London, baby!

Back to the hotel room, painy legs so fun has to be found. The bathroom mirror was surrounded with many white bulbs as if I was to be slapping on stage make-up in preparation for a great stage entrance. (Ta-daaaah, the beeping patient enters stage left!) And, as I really don’t get out much to find out about the existence of hotel paraphernalia, the room slippers were a novelty!

Hilarious one size ‘fits’ all hotel slippers

(The toenails are orange for CRPS awareness month in November).

The pre-inflation warning beep actually stops at 11pm. Supposedly to let us get some sleep. But the monitor makes growly noises when it’s working. So I put in some earplugs (you can get ones that stick over the ear-hole rather than push in which reduces pain that some of us patients get from earplugs), I also put the growling monitor in the drawer of the bedside cabinet with just enough room for the air hose to fit through the opening. But I have no idea how anyone with chronic pain is supposed to sleep through having their arm crushed hourly between midnight and 6am, and every 20 minutes the rest of the time.

A gold star to anyone who can guess what kind of state I was in the next day! (Here’s a clue.. 5am: adjusting pillows under legs because the CRPS pain went off the scale). (Here’s another clue: sleep deprived zombie mode)!

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Day two:   Return portable monitor along with my tome of related notes. Then undergo multiple tests.

The last of 6 pages (3 of exercises with readings, and 3 with notes every 20 minutes)

My last words on this sheet read, “…really foggy and groggy. Really tired of this now.” (On a side note, I suspect the poor consultant felt the same way on trying to read my writing. My writing was described by my school biology teacher as “characteristic”, and by my beloved school physics teacher as looking “like drunken spiders” had walked across the page)!

So…. the tests…

They are designed to see what’s going on in the autonomic nervous system (ANS).

The ANS is made of of two parts that balance each other: the sympathetic nervous system (SNS) and the parasympathetic nervous system (PSNS). They work in tandem, and when they’re working together the ANS is a smooth-running super machine. With the sympathetic kicking in to do things like raise heart-rate, increase oxygen supply etc when required (including the fight or flight system, hence my feeling of being stalked by Bertram the bear), and the parasympathetic doing all of the calming down and making sure that mundane aspects, like digestion, keep on happening. Together they work beautifully, but if they are not balanced, we have problems.

Pinned to the wall units in the testing room were examples of hr and bp outputs for each of several autonomic conditions (e.g. PAF, POTS, NCS), and each had a distinct pattern, which was intriguing to look at as I lay there between tests, but I can’t remember anything else about them as I was shot away by the end of all the tests!

These tests are designed to see what the separate behaviours and responses of the SNS and PSNS are, to figure out what’s going on in my body and how exactly I am ending up with all these symptoms, particularly the near-fainting, nausea, brain fog and gastro hassles (which I flagged up as the priority issues on my looong list of symptoms).

Of course, standing and sitting mean being upright and this can affect the blood flow. So to remove the effects of gravity in that way – all tests were conducted with me lying down. (The tilt table doubles up as a bed)!

So here are the tests I experienced, in no particular order (because I cannot remember the order!). For every single test my bp and hr was being constantly measured.

- Test Bicycle: (which I did on Day 1) Lying down whilst cycling my legs (on an actual bicycle-like apparatus with changeable resistance levels etc) and trying to keep the rpm dial at the point indicated by the specialist nurse.

- Test Squish: Holding a rubber cylinder filled with air in one hand – squish the cylinder to get the attached dial to stay in the same place (as indicated to me by the spec’ nurse). The catch is that the air is escaping, so to keep the dial in the same place you have to squish harder and harder to keep the pressure the same.

- Test Exhale: Breathe out into a tube to keep the pressure dial on the same readout. One baseline reading taken when lying down and then another reading taken with the tilt table at about 20 degrees.

- Test Argh: (the only one I didn’t do) holding a block of ice. It would have been covered with something, but as icing adversely affects nearly all subtypes of CRPS so would have been daft for me to agree to this. Especially as since then I have found that even getting vegetables out of the fridge hurts my hands. In true Gollum stylee…it buuurrrnses! So I didn’t do this test. But they had enough to go on, so they didn’t mind me missing one test, (apparently a lot of patients will miss one out).

- Test Stress: Maths is often used as a stressor in tests. I was asked to start at 400 and keep subtracting 7, saying each number out loud. If I was wrong the nurse would tell me, and I would try the incorrect answer again until I got it right, then I would continue. (This varies for each patient as the numbers can be changed to make sure we find it difficult enough for them to be able to monitor a stress-ish response. Under brain fog circumstances it doesn’t take much for it to be hard enough, though)!

- Tilt Table Test: Monitoring bp and hr whilst lying flat, then raising the table to about a 70 degree angle (so not entirely upright) and continuing to monitor along with noting down any comments from the patient about what symptoms are being experienced when. Also barefoot to check for colour change in the feet (which can indicate blood pooling).

The Tilt Table Test

- Test Food: Two little plastic cups worth of nutrition drink made with cold whole milk  drunk through a straw as quickly as possible whilst lying down flat on the tilt table. Left lying down under a blanket for 45 minutes whilst the food is pottering through our system. Then another (much briefer) tilt table test.

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By the end of all those tests I was a shot away, off the planet, foggy brained, mumbling, bumbling, vague creature who needed guidance down the corridor, bounced slowly off the walls but nonetheless had a rather sneakily good idea of filling up the hot water bottle from the coffee machine in the hospital canteen before the long ride home.

On the motorway, and oh sooooo grateful for Magic Dude’s wonderful care assistant and chauffeuring skills, x

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I had been forewarned that I might not get to see the consultant for 2-3 months, but in the end it was more than 5 months later.

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The consultant appointment:   15 minutes of brief exchange, followed by thinking of lots of questions that I wish I’d asked at the time.

Consultant appointments always seem to be so short. 10-15 minutes seems to be the norm’ in my own small experience, though my primary care doctors over the years all seem to be under the impression that we’re supposed to get an hour or so. I have no idea why there is this discrepancy, and there’s nothing I can do about it anyway. 15 minutes is what I got.

The tests were to assess the level of SNS and PSNS activity to figure out exactly what is going on in the autonomic nervous system. It is important that they are carried out by a top specialist so that everything is taken into account by someone who really knows their stuff, (the tilt table test is renowned for producing both false positives and false negatives, so a specialist assessor is far far better).

So first of all… the consultant said that the tests do not show any actual damage to my autonomic nervous system. For other patients this bit of the appointment could also be to advise that they have a certain type of autonomic dysfunction. Either way it means we learn more about what is going on inside our bodies and it gives us more information to move forward with choosing appropriate ways to try and manage our symptoms.

So, for me, he didn’t want to put me on more medications unnecessarily (which fits with my personal preferences, too), and instead had other suggestions.

We know that I have autonomic dysfunction though, because a) it all adds up, and b) the meds my primary care doctor and I decided to try out actually helped. The meds I tried were a type of SSRI (Selective Serotonin Re-uptake Inhibitor) which are more commonly known for their use as anti-depressants, but they are also prescribed for pain management, as well as to stabilise the ANS. It stabilises the ANS by flooding the receptors in the brain with serotonin. This helps because our receptors get really sensitive to serotonin levels which makes our neural reactions to the levels more extreme than they need to be. That is, they over-react and we experience the consequences! By flooding the receptors with serotonin the levels become more consistent, so the receptors have much less to react to, which improves our symptoms. SSRIs are not the only medications that have a stabilising effect, there are similar meds which do the same for our adrenaline (norepinephrine) levels (SNRIs), a bit of both (SSNRIs), and probably some others that I’m not aware of, too. I started taking a basic SSRI a year ago and (after the first few days of hiiiiideous side effects) I noticed improvements on not just the near-fainting (which is what I was most desperate to address) but also many other ANS based symptoms, too. (I came off these meds for the days of tests, by the way).

The tests demonstrated that:
- my autonomic nervous system is not actually damaged (‘just’ wonky ANS signals, then!)
- my blood pressure is always too low
- they fiiinally have recorded proof of palpitations in my heart-rate variations
- they also have evidence of the blood pooling in my feet

So…. his recommendations are:
- prescribed salt tablets (I’ve previously increased my sodium intake, but it’s nowhere near enough)
- to continue with the ANS stabiliser as there have been improvements (I totally forgot to mention the side effects of the jaw pain getting worse and soft tissue getting affected as well as the joint)
- prescribed grade 2 compression tights in the winter (my feet burn so I need toeless ones, and my left hip is badly affected by pain when wearing tights so…. toeless compression stockings?!)
- that I  get stress ball to squeeze to help blood pressure increase when it is low
- to drink eeeeven moooore fluids (at least 2.5 litres per day, I think it was 2.5 anyway, who can ever be sure through brain fog?!)

He had me walk up and down, walk with one foot placed directly in front of the other, hold my hands out and splay my fingers (afterwards I wondered if he was looking for tremors, but he didn’t say so, so as I wasn’t suffering with them at the time I assume he thinks I don’t get them. Doh!). Then he asked me to touch my toes! I’m hypermobile,…. dooooown I went!

So, the other outcome is…. that he is referring me across to hypermobility specialists (also based in London as there aren’t many specialists of that level in hypermobility, either). Now, hypermobility isn’t just about being bendy. I know I’m bendy. I didn’t realise when I was younger as most kids are bendy. The weird thing was when other people stopped getting bendy as they got older. I just didn’t realise that most people over 21 cannot touch their toes (according to my lovely knee specialist a few years ago). Hypermobility also affects the autonomic nervous system. So all of my autonomic symptoms are also listed under aspects of hypermobility as well.

Which effectively means another avenue to explore – another angle I can take in trying to better manage and understand my symptoms. So it is a gooood thing.

x

Tai Chi physio’s, a gold medal, and being proud of our achievements

The weekend before last, on Saturday night, I went out…. *gasp*,… on my own…. *woah*,… and I spent the evening with Tai Chi-ers and kickboxers whilst sitting in…. a wine bar *ohmygoodnesswhatevernext?* and….(wait for iiiiit….)… I drank two small pots of tea…!

Dang, I sure know how to party!

I can’t tell you how wonderful it is to meet people who take my disability in their stride. It’s not something that instantly makes sense as my disability is not apparent to the casual observer, but I’ve found that my teacher and classmates now spot when something’s not right. They clock my slackened facial muscles and my lack of twinkle in my eyes on a bad day. They don’t need the visual cues of me wielding my walking stick or going to sit on the floor to drink fluids to stop me from passing out. They spot it earlier than that these days. Tai Chi students in the West often begin learning it for health reasons, and as a result I have a teacher who’s used to working around health issues, and classmates with insight and understanding from their own experiences. I am not my disability, I am me, but my disability is something I have to constantly work around, so having people around who don’t bat an eyelid at continuing a conversation from floor level is pretty darn refreshing!

I practice Tai Chi during my physio time when I can. Physio time also includes getting washed, dressed, fed, etc, so on bad days Tai Chi is a no-go. But with Magic Dude to make me dinner on days where I had to give up getting-food-time to be able go to a Tai Chi class for physio instead.. it’s viable. I have to make it viable because it’s crucial to my health.

I began learning it when I could no longer do my physio exercises at the gym (owing to good ole Dysautonomia tending me towards the whole throwing-up and passing-out thing!). It became my new form of physio. Instead of going to the gym twice a week to do physio exercises, I have instead been going to Tai Chi twice a week. It felt like a step down because I can no longer do any form of even sitting-down-cardio’, and that still bothers me healthwise, but if someone came along and magicked me healthy tomorrow I’d still continue with Tai Chi.

I entered the local interclub tournament last October. I’ve never been competitive with others. I always felt bad about winning anything because I didn’t want to hurt anyone’s feelings by accidentally doing better than them! I was nervous. By nature I seem to have always been apologetic, and competitions don’t come naturally to me! Living with a disability changed that somewhat, and maybe getting a bit older and a bit wiser too. I have a disability which affects every single aspect of my life, but I am still me, and when I compete it is in defiance of my condition. My motivation is not drawn from a basic competitive nature, or a wish to be the best, it is drawn from battling the CRPS. I agreed to enter a couple of tournaments because, well, why not? It turns out I’m not half bad, and every success is an in-your-face to my health! If I have a care assistant to drive me and look after me before and after (i.e. Magic Dude on his days off), then spending 4 minutes of physio time doing some Tai Chi in shiny pyjamas is actually viable!

Before the shiny pyjamas!

I approach the Tai Chi the same way that I approached the studying… yes, I am disabled, I am limited and restricted, but I’m not going to let that stop me from seeing how far I can get. I have to approach things differently than I would if I was healthy. I can’t be active for long, and then I have to rest for hours to bring the pain and other symptoms back down again. Everything I do has to be flexibly based. The physio is crucial to my pain management however, so why not spend some physio time seeing what I can achieve? I have to live on the sofa with a blanket and a hot water bottle the majority of the time, but why should that stop me? When I can physio it’s good to do something useful but, if I can occasionally get to do something I actually enjoy then whooop!

To try to get me to realise that I’m not half bad at Tai Chi, my teacher had me enter a National tournament. It was two weekends ago. Magic Dude drove us all to the venue, and got me hot water bottles and drinks from the canteen there to keep me going. I was in the ladies beginners class. As far as I’m aware my competitors were able-bodied.

I won.

Ohmygosh, I won!

My teacher’s response was kinda along the ‘I told you so’ line! Awww

One of the few pic’s that came out in the low lighting so of course it would be one where I’m facing the other way and have got my arms up like a zombie!

The dysautonomia kicked in just before I had to perform. The 5-6 minutes I was prepared for turned out to be a mere 4 minutes on the day, which meant having to speed things up and hit the right time marker without any practice. Eek! Fight or flight decided it was time to increase the heart rate, which (in me) results in light-headedness, dumbass brain, and all my limbs get shaky. I find that performance nerves are minimal owing to my need to focus on my condition, but the fight or flight response more than makes up for that! I went wrong and had to blag it into the correct move. I wobbled on one leg so I made sure I took my time so that I didn’t wobble on the other leg. I was way worse than I usually am in class. But I won! *glee* Take that CRPS and Dysautonomia… mwoohaaahaaahaaa!

That went on a note and into my jar of joy!

My Jar of Joy at the beginning of 2013

I juuuust about got myself mostly functioning by a week later to be able to join my Tai Chi teacher, the kickboxing teacher, and students of both disciplines in the nice-cup-of-tea (wine) bar. And though I couldn’t quite accept the “And here she is.. our Tai Chi champion” (every time they said “champion” I interjected “beginner” and then got told off for doing so! Self-deprecation is something I’m really good at!) I am actually really proud of myself. For going out on a limb and giving it a whirl. For doing it despite my health. In fact for doing it because of my health (both to help it and to stick my fingers up at my conditions)!

When I started writing this it was two days since the tea (wine) bar gathering. My pain levels were not as bad as I would have expected, even more surprising as I was on a really unhelpful chair regarding legs pain. I think that the happy dopamine effect of being out with real-live-3D people was doing wonders at combating the usually inevitable pain levels! But two days later and I was sat here with my breakfast and in my head was just one event from that evening. That of a kickboxer turning to their teacher and saying “Oh, are there Tai Chi-ers here as well as kickboxers, then?”. Which is a perfectly acceptable question. The problem was that in my obviously sober state I registered the tone of voice (kinda ‘ewwww’) and the facial expression to match.

I’ve worked so so hard to just get through each day with my health the way it is. I’ve had to downgrade my physio activity owing to health deterioration. I was fortunate to find a physio alternative which I love, which I’m not half bad at, and which is now setting me on a path of physio in-your-face-CRPS. I’m totally stoked. I don’t cap my potential. It’s called potential for a reason – it is unknown. So I aim high and see what happens. I’m used to being dismissed by some of the kickboxers, they often have no interest in Tai Chi and that’s fair enough. But the ‘ewwww’ face and tone of voice as the eyes flicked over to the two Tai Chi students really struck a chord. I did not let it bug me at the time. So why did it bug me two days later?

At the time I was high on dopamine and enjoying conversations with actual real in-the-flesh people who, as it turned out, I have a lot in common with regarding our values and approach to life, (not to mention meeting a fellow Chai tea drinker).

(Hehe, I’ve just got to pause and realise what I just said… about students of Tai Chi drinking Chai Tea! *ka-snort* I’m so easily amused)!

But for some reason the disdain stuck in my memory and it didn’t feel nice at all. It’s not youth (a far younger kickboxer there was not only very respectful about Tai Chi but had declared earlier that he thinks Tai Chi is really hard), it is more about a lack of understanding and of basic respect. I’ve met experienced kickboxers who have no interest in Tai Chi whatsoever but they nonetheless have a great respect for it, which is really helpful to me for feeling that I still have some sort of value in what I do. Perhaps the ‘ewwww’ person will learn to be respectful, or maybe they won’t. It shouldn’t bother me either way. But it does. And when I cut to the meat of it… it bothers me because I have achieved so much for someone so ill, that I rarely get to go out and see people, that I never thought I’d ever win anything let alone in a sport, that I am aiming for the stars knowing full well that they’re too far away and I don’t have a spacesuit or a long enough ladder. It bothers me because for the first time in many years of ill health I feel like I’m someone in my own right even to some able-bodied people. How daft is that? I’m used to meeting wonderful people who also have conditions they’re dealing with, but I’m not used to healthy people getting close or caring. My Local Friend, who met me since I became disabled but still became my friend anyway, is an exception to what I was beginning to think was a pretty strong ‘rule’ of disabled life. (Big shout out also to all my friends who knew me before I was disabled and yet have weathered the changes and are still my wonderful, beautiful friends now, love you so much, xxx).

Who cares what other people think? Right? We should be the best we can and be proud of everything we achieve. The reason that I am bothered by their attitude is because it taps into my own fears. I am afraid of losing what I have found. Of being dismissed and sidelined again. Of rediscovering that magical form of invisibility that disability can endow.

The answer, of course, is to keep focused on what I love doing. I won’t lose Tai Chi. I might lose the ability to compete in tournaments. I might find that when pitted against more experienced competitors that my natural ability just doesn’t cut it any more against their physical health and training. But I didn’t start learning Tai Chi to do tournaments. I started it to help keep my body from losing function, what I’ve got out of it is so much more. More from the perspective of my health, and more from the perspective of my heart. Don’t get me wrong, I’m still aiming for the stars, and if someone’s got a ladder to lend me and if a spacesuit shows up on Ebay with biddings starting at 99p I’ll be there! I’ve just had a wobble. We all do. But if we hang onto that core of who we are and what we love then who knows where it will take us?

And no matter what happens, I will know that I did what I wanted to do, I followed my dreams as far as I could. Who’d have thought that a chronically ill girl like me with multiple conditions and full-body intractable pain could be someone in sport? It turns out that even when managing endless symptoms throughout each day, once in a while I can manage it well enough to spend 4 or 5 minutes with the able-bodied Tai Chi-ers. That’s surely something to be proud of, no matter what other people think. I wonder if I can be someone at a higher level than beginners? Whatever happens I’m not giving up, and I’ll always have fond memories and tangible reminders…

Ladies beginners class, national comp, gold

x

Acrostic kinda-poetry

Carefree Realists Purposefully Serene    –    yup, full of contradictions, just like CRPS!

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Elusively complex.

Like a jigsaw puzzle with the

Little corner pieces missing.

Every day is

Apt to present a

New confusion, a new

Dilemma

To test our mettle.

Holy macaroni, Batman!

Ever tried explaining

An alternate

Understanding

To

Others who are more ‘qualified’ than you?

Gah!

Not an easy journey.

Over the years, my

Me returns.

Empowered.

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x

Patient contact and self-advocacy on Social Networks

When it comes to social networks, Facebook stands out for me for two reasons:

Firstly, I am chronically ill and don’t get out much. I don’t get to see my friends unless they come to me, I don’t have colleagues to say ‘hi’ to each day, I don’t even have a pet to hang out with. I do, of course, have a Magic Dude! (that’s my boyfriend, for those of you who don’t already know ). His presence gives a whole new dimension to my life, for which I am most appreciative (a massive understatement, of course)! I also have a brilliant and supportive Local Friend, who pops round for tea and a natter every now and again. (We really must drag him out somewhere for his belated birthday celebrations)! But on the whole I just don’t get to see most of the people who I care about so much. And unless I’ve got an appointment with a medical practitioner who I haven’t met before, I tend not to get to meet new people either. So Facebook as a ‘social’ network is all the more meaningfully named for someone like me who just doesn’t get to socialise in the ‘real’ world any more. Facebook is my lifeline and my laptop is my window on the world.

Secondly, Facebook has a more direct effect on my condition, knowledge and treatment….

My condition is so complex and multidisciplinary that many medical practitioners do not know anything about it. Those who do know of it, tend to know it from the angle of their own discipline and thus do not have the broader multi-systemic picture. I therefore have had to become my own expert. I have had to acquire multidisciplinary information on my condition to be able to share it with practitioners to enable a clearer overall picture, better understanding of what is going on in my body and a better platform of knowledge from which to discuss symptoms and possible routes of assessment and/or treatment.

This would be a darn sight easier if I wasn’t a patient alone, searching the internet, only to find that information on CRPS is mostly limited to the view that it is a chronic pain condition to be treated as other chronic pain conditions. When we are new patients with no doctor to ask questions of, many of us turn to the internet, (a paper is being written on this, I’ll let you know when it becomes available). The trouble with this approach is that health information on the Internet varies in quality, (Morahan-Martin, 2004). As research moves forward the understanding of this complex condition changes and grows. There are old views of CRPS which are now obsolete, but they can still be found on the Internet as if they are current – there is nothing to tell us otherwise. A good example of this is the renowned ‘stages’ of RSD / CRPS which were discarded back in 2004 (see this page for more info) but can still be found all over the internet as if they are still thought to be relevant. No wonder so many of us learned to distrust information on our condition on the internet and instead turned to research journals to be sure that what we find is actually current.

This is where Facebook comes into its own for us patients. So many of us are already on the social network that it is very easy for us to run a quick search for one of many CRPS support groups on there. Anecdotal evidence suggests that CRPS support websites outside of the social network have become far less used as Facebook use has become more prolific. Nowadays this is where many of us patients finally get to meet each other. Even if there were more of us within visiting distance we would still find it easier to meet online as there are many days where even getting to the bathroom is outside our visiting distance! So modern social technology has brought us together.

On Facebook we can meet. We can feel reassured we are not alone, experience empathy from others about our condition experiences, we can share information, including research papers to show our doctors, and much more. Through discussing our thoughts, ideas and understandings of our condition online with fellow patients, who also have gathered a large amount of knowledge on the subject, we can refine our understanding, our ways of working, and find oodles of encouragement to keep on going. Whether it’s to get through physio sessions, benefits assessments, relationship hiccups stemming from condition complexities, or just simply to get through the day, the key is that we are not alone, that there are others with knowledge and experience who we can ask questions or bounce ideas off. There are fellow patients who ‘get it’ and they are just a few clicks of a button away. It’s a resource that I could never put a value on, it is truly priceless.

The added bonus is that I have met some truly wonderful people online. I have made friends – really good friends. We may be separated by time zones, but if you look at it from another point of view.. we are not restricted by time zones – we can meet so many people from all around the globe, so statistically speaking it is perhaps not that surprising that contact with so many people reveals some souls who fit beautifully with our own and who become truly dear to us in ways we never would have expected. Facebook has expanded my friendship group, who knew?

I’m not on Twitter, maybe one day I’ll get round to it. I don’t have a mobile phone that connects to the internet. I do now have a Pinterest account, but the function of a picture sharing site is different to Facebook. Through the Book of Faces I have found long-lost friends, I have more regular contact with friends who I had not lost but who are geographically far away (which is anyone further away from me than my bathroom  ), I have gained and clarified knowledge about my condition, shared information with fellow patients, I even have my own blog page on Facebook. So from a patient perspective there is no question for me which is my favourite social network, because only one has enabled me to come together with fellow patients with such an astoundingly positive way.

Much as I hate to love a big corporation on sheer principle, this particular one has truly changed my life, x

x

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P.S. If you are on Facebook… there is a superb research page specifically relating to CRPS called “RSD/CRPS Research and Developements” (recently a finalist in WEGO’s Health Activist Awards). The page is run by knowledgeable admin’s who are a mixture of expert patients, experts in the field and a fab combination of expert patient with medical training. Research is posted regularly, and it’s a great place to ask questions of a more medically focused nature. (If you want to come back and find it later, it is also listed on my ‘Useful Links‘ page).

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The reference mentioned in the text was:
Morahan-Martin, J.M. (2004) in ‘How internet users find, evaluate, and use online health information: A cross-cultural review’, CyberPsychology & Behaviour, Vol. 7, Issue 5, 497-510

If CRPS was an animal….. (tee hee)

If CRPS and it’s comorbidities were an animal, it would be big. It would have claws. And it would be dissociated from reality.

The animal doesn’t get a name. That would make it more solid, more ‘real’. It’s an ‘it’, a ‘thingamajig’, a ‘wossname’, a ‘doobree’. Besides, it has a tendency to change and morph over time.

The critter means well, but gets it wrong. A lot! It galumphs around trying to be useful but doesn’t listen properly and never double checks what it’s being told. It just grins in it’s despairingly cross-eyed, boggled brained manner and clatters it’s uncut claws across the shiny floors, totally unaware that it’s leaving huge great marks that we then have to try and smooth out.

Training it is a slow process. It’s not all here and easily distracted. It has a tendency to just keep ‘being’ in a little world of it’s own. Scattering sticky slobber as it skitters about the place.

Living with a huge critter that is dangerously built, but well-meaning in a miss-the-point, thick-as-two-short-planks kinda way is, well, it’s tiring. It’s wearing. Truly exhausting. And with it’s tendency to hiccup and burp it’s flaming breath at the most inopportune moments, no kennel will take it in, not even for a weekend break.

Keeping it’s attention on what you’re trying to say to it is tricky.. one shiny thing in the distance and it’s off again! So it takes constant work to keep grabbing it’s attention, distracting it from the shiny things, endlessly saying “Ooh look what’s that just here? Isn’t it interesting? Isn’t it pretty? Lets keep very still and quiet so we don’t disturb it…”        *sigh*

I’ve had my critter for many years and it’s improved a bit on the stuff I’ve been trying to teach it over a long period. Endless repetition and routine seems to help it develop a different habit, rather than listen to any reasoning I tried. But it develops new bad behaviours if something catches it’s interest, and then I have a new challenge once more. So I’m constantly having to do my research and learn about the incorrect behaviours to figure out ways to put them right, or at least improve them enough to reduce the hiccup and skittering damage!

Becoming a critter handler is… a surprise! It’s not a choice. It’s just something that happens in life to some of us, and they’re so big and unruly that we have to learn fast or flounder in the enthusiastic slobber. Ick! Most of us flounder for a while – going from a life with no critter… to a life with a huge galumphing critter is, er, well, it’s a bit of a shock to say the least. But like any other animal, it’s less about shouting at it, and more about working out how to make it listen and learn. Which is relentlessly hard work in extreme cases like this one, but worth it for the small successes as the gains are actually pretty large.

“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

Your certificate of awesomeness…

WEGO Health Activist Writers’ Month Challenge, Day 3:
“Post a picture that symbolises your condition and your experiences”….

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This award is for you, for our condition and our experiences, the space is for your name….

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xxx

My Health Activist Weblog

Well here I am on day two of the health activist writers challenge. I’m sitting supported upright to try to reduce some back pain I’ve been having and as a result my dysautonomia is trying to make me pass out! if it’s not one thing, it’s another, eh?!

I am one of many health bloggers / activists out here in the internet. I write about living life with (and despite) my conditions. But I also gather information on the conditions because they are so complex and specialist that many medical practitioners are simply not aware of them. So for us patients to learn about our own conditions is very empowering – it enables self advocacy so that we can participate in health discussions with practitioners, and even initiate practitioner awareness through the sharing of our acquired knowledge and understanding. Essentially, we help ourselves through learning about our own conditions and, unsurprisingly, many of us wish to help others going through the same process because we know what it’s like, we’ve been there and we want to help, x

I have had CRPS for 13+ years as a result of a minor non-invasive injury. CRPS is an intractable pain condition that is one of the most painful conditions known to medical science and which has spread throughout my body. The condition is not ‘simply’ a pain condition because it also involves the autoimmune system, the autonomic- and central- nervous systems as well as problematic rewiring in the brain.

Having multiple faulty systems has resulted in my array of additional health issues including permanent nausea, varying levels of continuous near-fainting, continuous ‘fight or flight’ issues, ‘brain fog’, comprehension issues, processing problems, varying levels of difficulty with word recall, faulty memory, arrythmia, IBS, body temperature dysregulation, teeth pain, jaw problems and jaw pain, migraines, fatigue, insomnia, ear pain, light sensitivity, noise sensitivity, increased sense of smell, overly sensitive taste issues resulting in difficulties eating various food types, a gagging response when eating certain food textures, disrupted vision, hand tremors, occasional leg tremors, eye tremors, other muscle twitches and spasms, dystonia…. I could go on, but I might send you to sleep!

Me with brain fog!

So here in this weblog I talk about living with these things – living despite these things – but I also focus strongly on gathering information about these conditions so that my fellow patients can read a lot of information in one place instead of each one of us having to search eeeeverything.

In particular, my ‘What is CRPS?‘ page brings together a large amount of information with a lot of references to peer-reviewed research journals. So my fellow patients and their doctors can see where the information came from and how up-to-date it is. This last point is crucial as the condition is so complex  and multi specialist that research is always moving the field forward and so keeping up-to-date with current knowledge is imperative. So I scour the research links and regularly add information to my ‘What is..’ page. (There will be more additions in the not too distant future).

Similarly I also have a ‘What is Dysautonomia?‘ page. There is more accurate and comprehensive information on Dysautonomia available on the Internet than there is on CRPS, but once again this is about drawing information together for fellow patients to find in one place. Unlike the CRPS page the references tend to be for reliable Internet sources because research journal papers tend to focus on really specific aspects and subtypes of dysautonomia, whereas I present information about the condition as a whole to present a broader foundation of information, with web links at the bottom of the page for patients to follow if they wish to know more on a certain topic.

My ‘Useful Links‘ page will continue to be added to over time. It includes key printable research papers to show to doctors, links to helpful organisation’s websites, and various other bits and bobs which can be very useful to patients with these conditions.

Of course, this is also a  blog. I write about experiences with my health conditions, with doctors, about doing things despite the auto gnome; about how it feels, what it does to us, my terribly British tea-drinking habit , how we can still kick some arse, and oodles more!

Some handy blog posts for fellow patients may include:

My CRPS journey to happiness

The weirdest thing about my health… - the problem with health variability

Tick…Tick…Tick…Tick…SPOON! - referring to Christine Miserando’s great analogy for explaining to others why we can only do so much in one day

The Hungry Bear that Lurks in my Coat-Cupboard! - talking through issues that cause me confusion in conversations, inadvertent problems with others, and a tendency to nearly pass out! (re ‘fight or flight’ and processing)

This Too Shall Pass - on using distraction techniques, facing my fear in different ways and working through

Experiencing cognitive change - and also the confusion, and even loss of loved ones, that it can have a hand in

What I take with me to my doctors appointments - how to get your doctors to listen and to think along the right lines to be helpful to you

McGill Pain Index, CRPS and Fibromyalgia - Pain level comparisons to demonstrate the high level of CRPS pain (can be helpful for those around us to see)

Always get copies of your hospital notes

Of course it may well be that the daft posts of sillness are of more use to my fellow patients, really…. never underestimate the power of a nice cup of tea and a laugh

Mmmmm..teeeaaa

Much love from me, and I’m cheering on all of my fellow patients and fellow Health Activists out there <waves pom poms enthusiastically>  :-D

x

Create your own personalised pain scale for better medical info’

One of my fave bloggers has just posted an amazing post!

If you, or someone you know, has a pain condition…. you just *have* to see her templates and reasoning for creating your own personal pain scale.

We all know that pain is subjective – we each experience pain but we can only rate it by what we have experienced. When asked to rate our pain at a score out of 10 the response as meaningless as the concept of “how long is a piece of string?”. Answer: the string is as long as the string is long.
Or maybe: the string is twice half it’s length!

On a scale of 1-10… how much pain are we in?

- What’s the scale they’re imagining it to be?
- How close to their understanding of the scale is my own understanding of it?
- If I explain what my understanding is when I score my pain, will they note it down? Or just note down an arbitrary number that means different pain levels depending on whose reading my notes?
- Would they ever understand that a 10 on the pain scale for a CRPS patient is basically “magic me out of existence because I wish I didn’t exist”?
- If I pointed that out would they just assume I’m depressed or something?!

I’ve talked before about how I used the standard 10 point pain scale to create something that I could use for non-pain symptoms as well as part of a previous post: What I take with me to my doctors appointments. (There’s also other info’ on stuff to take to your doctor, so have a look if you think it could be helpful to you, x) It’s always been more than a niggle to me as the standard pain scale is just so arbitrary – there is no general consensus for what the pain numbers mean. They quite simply mean something different to each of us (and even then our meaning may change over time). All it does is provide a before and after reference for physio’ teams to see if they’ve ‘improved’ our pain levels before discharging us from their care. (It doesn’t take into account any changes in our understanding of what the pain scale might mean during our experience of talking to the physio’ during the course of treatment, either).

So. Yeah. The pain scale sucks.

It’s arbitrary and pointless.

Especially when the pains that are being experienced by the patient are off any scale that the medical practitioner has ever experienced themselves. They’re just not in a position to comprehend that an 8/10 for a CRPSer is ‘nearly screaming’.

So – we need to remedy this.

If you’re going to discuss a pain condition with a doctor, remember that they’ll comprehend your experience better if you can use a scale that ties in with what it’s limiting effects are on you. And not just the physical effects, either. Pain disrupts all sorts of processes, not least our ability to comprehend and understand.

Below is the link to the brilliant post that can help you to do this. It goes into more detail on how to do so, with examples of the blogger’s own CRPS pain scales that she’s created over the years to help her doctors to understand. Notice that it’s okay to create a new one when the old one just doesn’t apply any more. And the different examples also function as templates that you can choose from to create your own scale. This wonderful lady (with a nursing background – she knows what she’s talking about ) has noted at the end of her post that these are available to use, to share, to help.

And if you think you might end up looking for this link on my blog sometime in the future when your are more able to spend the brain-time, then you can also just go straight to the tab on the homepage for Useful Links as I’ve added the link to the blog article there and noted it as ***Highly recommended***.

Here’s the link: Pain rating scales that describe reality  

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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.

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.

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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