Totally Tubular (Dumbarse) Tuesday!

I just found this draft from last winter and decided to finish it off and share it.
As you’ll see… you’re not alone with the Silly Brain stuff, but more importantly this post is about change being the only certainty with these conditions and crucially.. change can go either way.

So Keep On Keeping On is definitely the way to go. Sometimes we can be surprised by some good changes. 😀

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Last winter:

I started the day like a boss dumbarse.

It seemed okay at first: Magic Dude got up for work at Stupid o’Clock and I actually went back to sleep. Sleep! Awesome!

When I awoke I was lying there thinking I should get up when there was a knock at the door. I made it downstairs and stared bleary-eyed and incomprehensibly at the woman on the doorstep. She’d come to read the electric meter. Fair enough. I then went to look at the time… Ohgoodgrief it’s 10am – 30 minutes to get ready and leave for Tai Chi, eeeeek!

Yes, it’s Totally Tubular Tuesday! Which means that I have two physio’s today, but that they’re cool physio’s that I’m super pleased to get to do – Tai Chi and adaptive Kung Fu.

So I managed to throw clothes on and and shove my contact lenses in. Ruuuuush!

Then I Iooked at the time again.

It was 9am.

Dumbarse!

So I carried on getting ready at a more leisurely pace. Today is the only dry day for a while so I had to hang some washing out. This is the worst day I could possibly have to do it on as I have both physio’s taken up with my classes, so it means that hanging washing is extra activity which is baaad news for the pain levels. And as it’s winter here the pain levels are already dreadful as the cold takes hold.

But I did it. Hurrah! Washing hung outside. Breakfast eaten. Multiple tablets and supplements taken. Fluids imbibed. I even wrote christmas cards for my Tai Chi and Kung Fu classmates.

I got to Tai Chi on time. Or so I thought. I walked in and everyone had started already. I hate being late for anything. I can’t do the Chi Gung any more as this med’ doesn’t stabilise my ANS as well so I get too faint to Tai Chi if I do the Chi Gung. So I plonked myself down and did some stretches through the standing still bit, then I joined in for some Chi Gung arm movements whilst sitting down to reduce faintyness.

Then we all performed the Yang style 24 form together with the official music. I was trying to include the corrections I’ve been learning but my brain is always off after a bit of Chi Gung so it’s guaranteed to be sub-standard the first time!

Then I hurriedly swigged some weak tea from my flask and poured it down my tee-shirt. In front of my teacher. Awesome.

The rest of the lesson was dedicated to brushing up the Sun style 73 performance. Apparently I have claw hands today. *sigh* Blummin’ dystonia! My teacher was showing me how to smooth out one particular move. The correction is reeeaaally straight forward. I know it is. And yet I found that without the move beforehand I could not work out how to do even the basics of the move we were working on. That’s not too unusual for me, but then I found myself watching her show me the move several times in a row and I realised that I did not recognise the move at aaaall. I had no knowledge of what she was doing. I knew I did really, somewhere in my brain, but it’s the first time I’ve not been able to access something like that even when it’s happening in front of me. It was not an enjoyable CRPS Brain moment. 😦

you're always on way way to someplace more

But you know what? This is just part of that thing called Shit That Happens. So all I can do is acknowledge the brain anomaly and move on. No need to dwell on these things as it will make me sad. Move on. I’ll know the move another day.

So I practiced what I could so that I got some activity for my body during my allocated physio’/Do-Stuff time.

Then I got my christmas cards out and found that I’d brought some of the Tai Chi cards and some of the Kung Fu cards to the Tai Chi class. Ugh! Stoopid brain. It probably looked like I’d forgotten to write cards for some people. *sigh* Hopefully they know me better than that, though. 🙂

Then… gosh I’m so classy…I choked on my lemon barley water and coughed a lot, bringing my ‘happy christmas’ convos to an abrupt end. Waving goodbye to people I got outside and proceeded to do the whole whooping cough thing whilst bringing up scrummy mucus into my mouth. Yum.

This is all fairly typical for a Tuesday, I really struggle with the two classes in one day, but they are both important to me and I do them during my allocated physio’ time so they are not extra. (And usually there wouldn’t be washing to hang up).

So, off home for 6 hours of attempted recuperation with fluids, hot water bottle, cushions to prop me up, blanket etc, then on go the compression stockings again and back to the martial arts gym. Double checking the christmas cards before I left.

When I arrived home from Tai Chi I found that the washing had been rained on and was now sopping wet again. All in-keeping with the theme of the day I guess!

And yes I still went to my adaptive kung fu lesson. I made it through despite nearly passing out whilst standing still and holding a target up for someone else to practice kicks past. Standing still is blood-pooling-tastic eh?!

It may look like I'm doing nothing but

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Today:

Now that my teacher is back from the Tai Chi World Cup in Taiwan and has finished winning gold and silver medals for a while she has got stuck into running a new class which started today. And yes, I was there for the first of the new class which is all about strength and conditioning.

As any pain patients know – pacing is the key to a lower pain baseline, and as any hypermobile patients know – pacing is jolly useful but strengthening muscles to help reduce the bendiness is pretty awesomely handy.

So that’s what I’m working on: strength and conditioning the parts of my body that I a) need to improve for Tai Chi tournament purposes, b) which will reduce various hypermobility issues and c) which is all done within my daily paced physio’ time so that I can do so without exacerbating my pain baseline.

spoons

I wrote a while ago about how the med’ I’m taking to help stabilise my Autonomic Nervous System (ANS) issues somehow remained pretty crap until this Spring despite starting it in the Autumn before. I don’t know why that is but I certainly wasn’t complaining when I could not only join in with the Qi Gung in class again but I could even shut my eyes without immediately keeling over. Wow! What an improvement! The dystonia reduced in severity too. It’s always worth talking to your doc’ about any tweaks or alternatives because tiny changes in med’s can result in substantial improvements in our uber-sensitive bodies.

This year I’ve worked at the Tai Chi and covered some of the lessons as substitute teacher that I would usually attend as a student as part of my physio’ anyway. (A physio’ spent teaching gives me a different insight into my Tai Chi and is a whole other learning curve. And definitely a challenge)! I’ve also worked at the adaptive Kung Fu, trying to adapt as little as possible as it’s within my daily physio’ remit but there’s always odd little aspects that I need to be careful about (e.g. when my heart goes dysrhythmic, when I get faint and working round issues such as my degenerative hip joints).

But as you can see from my draft above that I wrote last Winter… I am doing better than I was last year in some rather important aspects.

set backs and come backs

Admittedly my proprioception still goes awol and my teacher has seen me pour drink down my top many times. Even as recently as Thursday in fact! Ah well. I still have all the same issues with my health, and many are worse because that’s just the way it is, but that doesn’t mean that I can’t make improvements in important ways. And it certainly shows that my determination to keep at the physio’ pacing keeps paying off endlessly.

So finding my draft from last Winter and re-reading it was a pretty good experience for me. If you journal you’re probably telling me through your computer screen that I should try journalling more often eh?! 🙂

My determined physio-ing and my med’s tweak have helped me to build up to working on stabilising the most hypermobile areas in my body. It would be awesome to experience less subluxation of my shoulders and sacrum, and if I can do the strength and conditioning exercises as a tougher physio’ each week then my ANS should be more relaxed about the lesser activity the rest of the week. Or at least that’s what I’m hoping based on my past experience.

I’ll keep on keeping on anyway. Winter is not quite setting in here yet, the changes in weather are wreaking havoc with us Painies, and when Winter finally sets in our pain levels will rocket even more. So I need to be on top of my physio’ schedule to make it through to Spring with as few setbacks as possible. I don’t know where I’m headed so it’s all about doing the best I can for my health. I guess I’ll just follow whatever path turns up under my feet. And if I go backwards that’s all par for the course, it’s just setting me up for another comeback, right?

Feeling determined!

look at how far you've come, rather than how far there is to go

x

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Invisible Illness Week 2014

Invisible Illness Week is 8th-14th September and the 30 questions are in circulation again. So here’s my answers for this year, it will be interesting for me to see how different they are from last years answers too..

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30 Things About My Invisible Illness You May Not Know….

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1. The illness I live with is:

Multi-systemic – it affects entire systems in my body with multiple ongoing issues all day every day…

faulty autonomic nervous system,
which affects the central nervous system,
plus unhelpful neurological re-wiring and
a compromised auto-immune system.

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So I have a terrible disease but not to worry

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2. I was diagnosed with it in the year:

CRPS in 2005

Dysautonomia 2014 finally in writing, though it was diagnosed verbally back in 2010

Partial Hypermobility 2014, as the mega ‘growing’ pains and clicky joints were dismissed by my childhood GP despite my Mum’s concerns

Degenerative issues in hips 2014

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3. But I had symptoms since:

CRPS since 1999

Dysautonomia since 1999, it kicked in within weeks of the CRPS with IBS, closely followed by a tendency towards low blood sugar and body temperature dysregulation.

Hypermobility always (also affects the autonomic system)

Degeneration in hips over time – a development potentially related to the hypermobility

All of these conditions are inter-related. The issue from birth was the hypermobility… which can affect the autonomic nervous system but I experienced no major issues there originally.

The pre-disposition to autonomic issues and the priming of nervous system default responses during childhood resulted in the development of CRPS (which involves faulty pain signals through the ANS) after a minor injury… which had the knock-on effect of more autonomic issues developing over time (some within weeks, others years later after a trigger event).

Plus the long term hypermobility has also had its own effects on my joints.

So it’s all very over-lapping.

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4. The biggest adjustment I’ve had to make is:

Learning how to still be *me* despite the massive lifestyle changes.

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when life gets harder

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5. Most people assume:

That I’m not that ill <facepalm>

(because I usually look and sound fine when they see me during my physio’ which is the tiny portion of my day where I’m mostly functional) :-/

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What you see depends on what you look for

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6. The hardest part about mornings are:

Having to wait for hours to actually be able to move about with less extreme pain and/or less extreme near-fainting.

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7. My favorite medical TV show is:

Scrubs 😉

(In the UK medical programs are all soap operas. We also have documentary series which might occasionally cover a health issue).

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8. A gadget I couldn’t live without is:

The kettle!

(because my hot water bottle is a permanent fixture in my daily pain management *and* the kettle also enables cups of tea!)

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9. The hardest part about nights are:

I know I should probably say the pain, or the fact it never ever ever goes away, or the silent tears that might escape every once in a while when it gets so hard to just keep fighting when even sleep won’t grace me with it’s assistance. But you know what really bothers me the most? Trying not to wake Magic Dude up coz the headboard creaks when I shift position when I’m sitting up!

(He says I shouldn’t worry about it but I’d rather he got more sleep)!

That not to say that it’s worse than the other things, just that the other things are permanent and horrific so I tend to focus on the fleeting or non-health aspects of the toughest stuff to help me to deal with it!

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10. Each day I take ? pills & vitamins:

9, plus painkillers when required (with occasional anti-inflammatories though I try to keep away from those if possible owing to detrimental long-term effects)

Bitstrips, meds and supps

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11. Regarding alternative treatments:

‘Alternative’ can have many interpretations. If we’re going down the ‘anything that’s not prescribed’ route… even 8 of my 9 pills are supplements crucial to assisting my body cope with this condition. I ‘pace’ my activity to manage my pain (because it retrains my autonomic nervous system to not over-react). I don’t just do functional movements at home I also attend classes to further strengthen my muscles, improve my balance, work on my awareness of surroundings and where parts of my body are during different movements etc. I also attend a tougher class once a week as I find that this enables my nervous system to compare the rest of the week with that hour rather favourably which also helps baseline pain levels! I’ve had acupressure, auriculotherapy (non-invasive acupuncture on the ears) and even carefully applied acupuncture (they didn’t help the respiratory issues because the faulty de-fault had been set in place for too long, but it was worth a try especially as it was available on the NHS which, by my own description of alternative being non-prescribed treatment, renders all that as mainstream medicine now anyway). I use helpful psych tools for dealing with problematic symptoms of my conditions and to work through any negative feelings I may experience about various aspects of my health (these are available through pain management teams on referral but I acquired these skills myself partly through my psych’ studies but mostly through self-searching and trial and error). I learn much about my own conditions so that I can logically work around the health issues and give my body a better chance of coping with all that is wrong within it. I also happily accept reiki healing offered by friends.

My conditions mean that meds are very problematic in various ways, so doing all that I can to try to keep things vaguely functional without adding the negative effects of meds is reeaally helpful.

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12. If I had to choose between an invisible or visible illness I would choose:

I have both depending on whether it’s during a paced active part of my day and how much various symptoms may be playing up in that moment. Both have their pros and cons, but having both gives me the extra insight which I can employ usefully by helping others, sharing insights and so on.

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13. Regarding working and career:

Work is not just paid employment so although the psych career went down the pan for me I have the 24/7 job of keeping my body functioning as best I can which includes trying to keep up with the latest research when I have enough Brain to make sense of strings of words. My hands are full just with that. When possible though I also spend time assisting in a couple of support groups (albeit rarely at the mo’ as I’ve been more symptomatic of late) and the infrequent addition of writing of course. 🙂

What's wrong with my brain

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14. People would be surprised to know:

How bloody awful I feel at any given moment!

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Pain scale with continuous smiling!

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15. The hardest thing to accept about my new reality has been:

How much it keeps me from doing really worthwhile things that would help others e.g. starting a charity as a healthy person would not take two or three years just to get to where we are with it now. It will be really helpful when it’s set up, but it’s so frustrating to be kept from doing things when there are good things to be done, it just means that everything is so slow going.

(Or, more personally, the people I’ve lost as a result of the effects of these conditions. But I’m still steering around that a lot of the time, although at least I’m finally coping better with it now it’s four years on, x)

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Start where you are, use what you have, do what you can

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16. Something I never thought I could do with my illness that I did was:

Start learning martial arts (albeit adaptive, but many able bodied people have injuries to work around so really ‘adaptive’ is a typical approach, or should be anyway).

when nothing is sure everything is possible

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17. The commercials about my illness:

That’s a very US thing, as the UKs NHS is now mostly privatised and getting more so I would not be surprised if we started seeing things like that over here eventually as it will lean more towards insurance for health care and all the knock-on effects that entails. There is certainly very little awareness of CRPS and Dysautonomia in the UK, even amongst most medical staff though, and I would be surprised to hear anyone talking about CRPS or Dysautonomia.

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18. Something I really miss doing since I was diagnosed is:

Dancing. Not professionally or anything, just dancing for the enjoyment of it.

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19. It was really hard to have to give up:

The career path I was working towards.

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Problem or how we percieve it

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20. A new hobby I have taken up since my diagnosis is:

Tai Chi

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21. If I could have one day of feeling normal again I would:

Skip! I would skip gleefully and laugh a lot!

Of course there’s so many things I’d want to do and any of them would be awesome, but the first natural thing of the moment would be to laugh with pure elated, unabashed, incredulous glee and skip skippety skip! (There’d probably be a cartwheel pretty soon after that, too)!

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22. My illness has taught me:

That I am stronger than I ever knew and in more ways than I realised.

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you decide how your soul grows

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23. Want to know a secret? One thing people say that gets under my skin is: 

I don’t expect much from non-CRPS people, not in any objectionable way at aaall, but simply because how could they ever be expected to know about such a complex and little-known condition? I certainly wouldn’t have prior to actually having the condition, and it took several years even after I was diagnosed to find out. But when doctors doubt the fundamentals of the condition(s) I have, or start down the “and what makes you think you have CRPS?” route…gah! It’s okay, I mean I can pull them back down to earth with a thud when I point out that I was diagnosed by one of the countrys top specialists courtesy of my medical history and an MRI scan as the clincher, but it’s the time it takes you know? It’s wearing having to explain basics to doctors all the time, and it’s a waste of valuable time.

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Arse from elbow

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24. But I love it when people: 

Check to see if I’m okay to do something because they know it might cause issues in my body. It gives me a chance to say if I’ll have trouble doing that today and it doesn’t put a damper on things because *that’s* why they asked. Looove those friends  😉

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25. My favorite motto, scripture, quote that gets me through tough times is:

“Be the change you want to see in the world”

I still use “This too shall pass” (a lot!) but I fancied including this other quote as it is a huge motivator for me.

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26. When someone is diagnosed I’d like to tell them:

Anti-oxidants!
Pacing!
Beware of outdated and incorrect info’ online!

Anti-oxidants..
Inc Vit C up to 500mg at a time (because that’s all the body can absorb in one go) 2-3 times a day. This is also a good thing to do before and after any invasive procedure (even dentist appointments) and 2-3 months after the event is common advice.

Many long-term CRPSers take vit C every day.

Antioxidants are so important to the long-term health of our mitochondria. I also take Co-Q10 every day.

Pacing..
the same amount of activity every day no matter what the pain levels. Starting with a few minutes if that’s all that’s viable is fine because it’s keeping it consistent that is important in retraining the autonomic nervous system to not set off the inner alarm bells every time you move. Eventually this will reduce the pain baseline and improve quality of life and it will even out the days instead of having good days and bad days (which we perpetuate by doing more on good days thus causing bad days and which is the worst thing we could do because it reinforces the faulty autonomic over-reaction, and hence the circular hellishness goes on if we do not pace)

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Online info…

The ‘stages’ were discarded in 2004.
The ‘types’ were a carry-over from the old RSD name but it makes no odds which you have – the nerves are damaged in both cases and the treatments are the same

Lots of info’ online is so terribly out of date and therefore incorrect. Research in recent years has shed loads of light on CRPS and most websites do not have this latest info’. Many fellow patients are also not aware of the latest knowledge and (sadly) neither are many doctors.

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27. Something that has surprised me about living with an illness is:

How much you often become one of two extremes depending on people’s view –
I’m either…

a) not that ill really or
b) not really a person, irrelevant to the point of near invisibility

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pirates have no concept of ableism

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28. The nicest thing someone did for me when I wasn’t feeling well was:

This past couple of weeks the near-fainting has been so so bad I’ve even been missing my crucial paced physio’ time. On a day where I was spinny on the sofa Magic Dude turned up after work with pizzas.

At the Tai Chi nationals in June I competed even though I felt so awful. I concentrated so hard and sweat was pouring off me by the time I finished my handful of minutes. As soon as I could leave the performance area I collapsed. Magic Dude was on hand with a bag of salted peanuts, a bottle of water and a sweet drink. He is on standby when I get really symptomatic and he generally knows what to get for me depending on which symptoms are being particularly arsey!

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29. I’m involved with Invisible Illness Week because:

The concept of ‘disability’ in the UK is worse than ever since the welfare reforms and the posited concept of the disabled as scroungers. The number of attacks on the disabled has increased shockingly. I have been screamed at for parking legitimately in a disabled parking space and yet I have many a time gone home in tears because the disabled bays were taken by people with no badges and the screaming pain was so bad I had to turn round and drive home again and wait days (weeks in the pre-diagnosis years) for the pain to calm down enough for me to try again.

There is even an organisation pushing for a more active looking disability symbol but still only include a wheelchair user in that symbol. Only 7% of UK disabled use a wheelchair so no wonder concepts of disabled have been so skewed for so long, let alone the worsening effects of contemporary politics. So it is apparent that even some of us disabled folk are conditioned to think that the wheelchair is the most appropriate symbol for a group of people, when 97% don’t wheel about the place and therefore are often targeted for not looking disabled.

To work so hard to change a symbol which does not address the distressing effects experienced by 97% of disabled who are mistreated for not ‘looking’ disabled is hard to get my head around. It’s a nonsense.

We need change.

And we need to make it happen, because we have the informative inside view.

.accessibility

7% of UK disabled, 93% of disabled look nothing like this picture

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new NY disabled symbol

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7% of UK disabled may experience improved attitudes, but 93% of disabled look nothing like this picture

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A broader idea of disabled which includes the concept of non-wheelchair users and which could help to broaden understanding of disability and thus result in less aggressive behaviour towards the 93% non-wheelchair disabled when they legitimately use disability utilities, parking bays etc

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30. The fact that you read this list makes me feel:

Relieved that someone out there wants to learn more during Invisible Illness Week.
So many people don’t realise that many disabled and chronically ill don’t necessarily look unwell.

So… thank you xx

seal of approval

^ geddit? X-)

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I’ve just had a look at my post from last year and I’m intrigued, and pleased, to see the positive changes in my answers to 15 & 18. 🙂

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A note on pictures: I have found these wonderful pictures floating about being shared on social media. If one of these is yours I would love to attach an official source so that others can find your work, or if you would prefer your work not to be included please do let me know and I’ll remove it straight away, x

Interpreting new medical information

How do we find reliable information and not freak out when given a new diagnosis?For those of us with multi-systemic conditions new diagnoses are pretty much par for the course, but our laid back attitude to new conditions is won from experience.

Weirder still is how we also have to deal with no clear diagnosis as this often means the continuation of confusion in the medical practitioners working with us.

This year I’ve experienced both!

I’ve been to see the UK’s top autonomic dude and been told I have POTSy stuff going on but not enough to be diagnosed with POTS. This is confirmation of autonomic dysfunction and how in my body it is also wreaking extra havoc with near-fainting (near syncope). Not that less specialist practitioners really know what to do with ‘autonomic dysfunction’ or what array of ‘interestingness’ that can result in.

I’ve also been to see one of the team at the UK’s top department for hypermobility and been told that I have partial hypermobility. After all my years working hard on my legs (for example I no longer have to work my kneecaps until they loudly *bang* back into place)! I am still very hypermobile in my core, though. This explains why even my breastbone has been subluxing in recent months. (Subluxing is a patient shorthand for sub-luxation which is when joints pop out and back into place, it’s a partial dislocation rather than full-on dislocation/luxation). So I received some instructions to get referred to physio’ rather than any diagnosis which would be clear to other medical practitioners.

Frustratingly the hypermobility expert noted that she didn’t see any signs of CRPS in my skin at all. I wrote to her asking for this to be amended in her report as although a CRPS expert would know that whether any ‘signs’ of CRPS are present or not at any given moment in time has no bearing on whether that patient has CRPS or not, she sadly did not deign to a) respond or b) amend her report. So her report effectively includes what looks like a query over my CRPS diagnosis which only experts would realise was unfounded and any other medical practitioner would actually take that questioning of the diagnosis on board. *sigh*

The latest info’ arrived long after the hypermobility appointment as a result of an x-ray which was requested by the expert to ascertain whether I had shallow hips. I’m going to use the resulting letter to show how I choose to filter search information online.

First rule of searching online: searching individual terms is handy for a clearer understanding. I don’t want to find lots of vaguely or potentially related information, I would have no idea whether what I was reading would be related to my personal situation or not, so first of all I only want to find the exact meaning for my body.

Second rule: use a reliable source with a clear explanation. Once again.. I want a direct translation, not a load of vaguely related gumph that might not even relate to my own personal situation. So no wikipedia, no tangents into something that includes the terms I’m searching, simply a good medical dictionary or medically grounded information website.

So, here’s the info’ from the consultant’s letter..

Letter, hip x-ray, part 3

 

Essentially I want to translate this key bit of a sentence:

“…minor dysplastic changes with minor degenerative changes in her hips.”

First of all – note that “minor” is used in both cases. Long-term chronically ill folk usually don’t panic anyway, I mean, what’s the point right? I wrote a post a while ago about the time I visited a cardio’ doc’ and he said he could think of nothing that would make my permanent near-fainting anywhere near bearable or functional except for a pacemaker. Even in a situation like that it’s a case of allowing the emotions to pass and then getting back to life. We don’t do our thinking when we’re emotional because we recognise (from that bumpy old road of experience) that our thinking is pretty poor under those circumstances. It’s just the way the human body works so don’t worry about that happening, it’s just the way it is. And anyone with autonomic issues knows that when the ‘fight or flight’ kicks in then we’re not to even bother thinking at all, coz that mechanism means we don’t have full access to our higher functions anyway. So, even if you receive a shock diagnosis…. allow yourself time to calm your nervous system down. Stop, sit, have a cuppa and don’t try to figure out what it might ‘mean’ because our brain is not equipped to do that until we get calm again.

So yes, back to looking at how to decipher medical info’, which we only do when we’re feeling calm…

“Minor” sounds positive, “degenerative” can sound scary. It would be quite natural to skip past the “minor” and focus on the “degenerative” but it’s unhelpful and inaccurate to do so. Once we allow our emotional response to choose the focal point then our imaginations start getting involved. Our imaginations are amazing things, that’s why some of the scariest horror films are the ones that don’t show you what is actually happening to a character at the time – because it’s way scarier to let our our imaginations do what they do. So leave the imagination out of it. We simply want facts. Just a translation. Keep focused on that because it is key to dealing with medical information in a manner which is most helpful to our health (both mental/emotional and long-term physical).

The initial question is: “what does dysplastic mean?”

We can type “dysplastic” into our search engine, but then we also have to remember that we need a reliable source with a straight-forward translation in medical terms so adding the words “medical dictionary” or “medical terminology” or something like that might help us. But even then the search will still find case studies, specific types of dysplasia, maybe even hip dysplasia which sounds so appropriate that it would be tempting to follow one of those links, but I just want a meaning for “dysplastic”. That’s all. I don’t want to read stuff which may be medically relevant to the subject but not actually relevant to my health or my body.
I can read around the subject after I have a basic understanding.

It is important to notice here that the information that we choose not to explore is at least as important as the information that we do choose to read. Restricting our initial reading reduces that chance of reading things which don’t actually directly relate to us and which might make us worry unecessarily. Choosing to look after our mental health and emotions at this stage is as important as finding out how to look after the physical health issue we are looking into. We deserve to be able to work through new information in a manner which is informative without adding extra layers of potential distress.

So I ignored pretty much everything that the search brought up because it wasn’t specific enough. What I did take on board was that it is a very vague term. “Dysplasia” bascially means that something is not entirely ‘normal’. It simply means that there is a standardised ‘norm’ for things and we do not fit that norm exactly. So in that letter I’ve basically been told that there are changes which have resulted in my hips no longer being described as ‘normal’. That is all I need to know at this stage – it is vague, and my hips are just different. But vague is better than wrong, so my careful filtering out of lots of info’ has done it’s job…

Many of the links included references to moles and cancer, imagine what could have been taken away from a search on “dysplastic” if I hadn’t been so determined to simply find a translation. Anyone in this situation could have started worrying that the changes are really scary, it would have been all too easy to make assumptions about what that letter meant, about what’s happening inside the body, what it might mean to future health etc. So yep, translation only – avoid all round-the-subject information until you are sure what exactly has been reported about your own personal body.

So, “minor dysplastic changes” meant that my hips had developed something different from the norm. The next bit says there’s some minor degenerative changes, too. But that’s it. There is no other info’ there to make it any clearer. And when you live with a complex condition where many possibilities exist then there’s no point worrying about anything unecessarily. Whatever is, just is. So all I want is some more info’ to clarify what I’m dealing with because key to working with this is to know what I’m working with, of course!

So I asked my GP for more information. She’s used to me asking for more info’ and she knows that I ask simply because I want to understand how to do the best I can for my long-term health. I live in the now, but that doesn’t mean that I don’t look after my body for my future.

The extra info’ the GP gave me is from the radiologist and is less of a potential emotional minefield as it simply requires translations of terms for parts of the body…

Letter, hip x-ray, part 2

The “femoral heads” are simply the top of the thigh bone (femur), and “acetabula” is the rounded bit of the hip joint that is part of the pelvis (plural of acetabulum so it refers to both hips in this case). Simple searches can uncover this information as long as you continue to refuse to get led astray. ‘Just the facts, ma’am, just the facts!’

“There is minor uncovering of the femoral heads but the
acetabula appear well formed”

So, interestingly my hip joint is not too small, which is what usually happens with dysplastic hips (see how easy it would have been to read information which is relevant to the words used, and even to the condition in general, but incorrect for my own body). So as the tops of the thigh bones are not fully covered by the joint sockets then I guess they must be too big, or is that another assumption?! See how easy it is! As my fabulous fellow blogger Isy Aweigh pointed out it could alternatively be as a result of my ligaments being too stretchy to keep things where they should be (totally viable in my partially hypermobile body), or it could be that I have a strangely chunky amount of cartilage in the mix, or even a mix of all three of these things. I don’t know because the information doesn’t specify. Whatever it is, whether it is a result of the changes over time, or whether the changes are something else and I’ve always had abnormal femurs/ligaments/cartilage is not something which is explained here. So that is unknown because you can’t assume anything when it comes to your health! Though the hypermobility expert has interpreted them as “dysplastic changes” in her letter so maybe she was privvy to more information than the GP and I, or maybe she made an assumption, who knows?!

The last bit of the radiologist report reads:

“Minor degenerative change noted with some sclerosis. Joint space is preserved.”

It doesn’t answer the questions I would have as a non-medically trained patient… ‘degenerative change to which bit?’ Don’t be afraid to ask your GP to explain things to you. And don’t be afraid to ask them to get more information from the expert in question if the issues are not fully explained.

In this case my GP translates the radiologist’s report as the tops of my thigh bones having the degenerative issues and my joint sockets as being a-ok. My wonderful nurse friend has also said that if it doesn’t specify where the degeneration is then it means that it’s in the joint space (which includes the cartilage and the ends of the bits of the bones that help to form the joint), but as patients there’s not really any way we’d have of knowing so asking medical practitioners for more information can be very helpful.

Whereas a quick search on “sclerosis” wasn’t actually very helpful. *sigh* The various links advise that it is a thickening or hardening of tissue and then go off on various different specifics which may not relate to my personal situation. Once again the handy Nurse Isy crops up to advise that sclerosis is basically scarring – tissue that has been damaged and repaired, but the repairing tissue is different to the original tissue, it’s thicker and denser – hence the thickening and hardening effect.

Knowing that the joint space is still good is great news as it means that the bones are not grinding on each other, which would involve further issues to be looked at if they were.

As it turns out, I’ve been taking high strength glucosamine with chondroitin for, oooh, about 12ish years now I guess, maybe more. It’s a good combi’ for cartilage repair (not regrowth) and even repair to some small fissures which can occur in the ends of the bones at the joints; or at least that’s what the research said years ago! It’s still said to sometimes help with joint pain anyway. So who knows… maybe that’s part of the reason the issues are still noted as “minor”. Either way, it’s been no bad thing for my body to keep taking the combo’, which is rather nice to know. 🙂

So, if this was your medical info’ would you be champing at the bit to find out more yet? Okay, okay!

Now that we’ve checked out the terms one by one and got a clearer understanding of the basic issues as they relate to the specific patient’s body, let’s see what wider reading on the degenerative issue can tell us…

A search on “degenerative hip joint” basically brings up Degenerative Joint Disease and advises that it is also known as Osteoarthritis. Oh. Right. That seems pretty clear then! Except it’s not – it turns out that they are not the same thing in diagnostic terms at all, and each have very specific criteria which at this early stage I would not meet. So I had figured that I had early onset osteoarthritis, and yet it was not the case at all. I am predisposed towards it yes, I have early signs of hip degeneration yes, but at this moment in time I am a patient experiencing issues with my hips, but I am not a patient with a diagnosable hip condition. Again, another example of how tricky it is to find truly accurate and reliable information online, and another whopping great example of how important it is not to over-interpret what we find. Keep it specific to you and your body, don’t expand the information to broader health issues because they may have nothing to do with your current situation.

I would always advise the same filtering system to be in place when you search anything on the internet, especially anything health related because the impact of false or even just tangential info’ can be so problematic for our understanding and current health as well as how we are to assess any changes to our lifestyle for long-term health.

Rule of thumb: look for a medically sound website which is not pushing one aspect or another. We want to know what works, or not. Not what sells. Remember… ‘Just the facts, ma’am!’, and just relating to your body.

I found a link when I originally searched which noted all sorts of different treatments from cortisol injections to surgery, and I loved the information in that link because it was also noted that many of the treatments enabled a short-term improvement at the expense of worse long-term issues. I immediately knew that I’d not be opting for any of those and that my existing approach of exercise (including strengthening), good nutrition, and medical/fitness support on hand if I need it would be my way of working with this development. I have just searched again and haven’t found that link. That just goes to show why our self-imposed filter system is so important in these kinds of searches.

As far as me having hip problems goes, it’s no biggie. Many people get joint issues developing from middle-age onwards regardless of any pre-existing health issues. I’m just starting somewhat earlier that’s all. And it’s not like I don’t know how to manage pain, or how important both physio-exercise and recuperation-rest is. So this is easy to take in my metaphorical stride (even though I’ve been stuck on the sofa for several hours recovering and resting after my morning physio’ earlier today, I can still metaphorically stride, right? 😉 )!

But my letter that I’m using as an example could easily have been perceived as scarier. In fact this example could have been scarier simply by handling the learning process differently and failing to filter out the excess of information which may not even be relevant.

So if you’re going to search medical info’ (and I recognise any ‘expert patient’ is going to do that at some point because we’re the centre of our health web and need to know what’s what).. be aware of the importance of how to search medical information, and of the importance of keeping the info’ specific to your body. Most especially be aware of the huge importance of how to filter out the less reliable information and that which is less specific to your body. And never forget to allow yourself time for the emotions first – medical searches are not helpful when we’re feeling emotional in any way. Allow yourself time first, then if you’re going to search for something only do so when you are feeling calm because that means that our brain is in a better state to filter and work through the information accordingly.

And finally, there is a footnote in the letter from the expert, did you notice it?

Letter, hip x-ray, part 3

“Should she continue to have significant problems despite that a referral
to a local orthopaedic surgeon is advisable.”

Would it have worried you?

Remember: this is a footnote for my Doctor. It is not a note for me to worry about. If I go to her at some point in the future to report worsening hip problems it simply gives her a pre-set starting point instead of a new round of referrals to ascertain where it is best to send me first. That’s all. And in addition it also confirms that I’m doing the right things, which is always great to know.

Hoping this helps a little bit,

From your friendly blogger who, medically speaking, might actually be… quite hip?! 😉
(I know, *groan* right? Sorry).

(Not sorry, really. Hehe).

x

Hypermobility specialist appointment

One of the outcomes from my neuro-vascular/autonomic consultant appointment back in April was that the consultant referred me over to one of the top two hypermobility spec’s in the UK. They are to be found at the University College London Hospital (UCL) in Euston Road, London, UK. My referral came through very quickly and I was offered an appointment this September which actually came around far quicker than I thought it would. (I must be getting older if time is passing that quickly, either that or I am having a lot of fun 😉 ).

That hypermobility appointment was on Tuesday of this week.

I had been sent some forms to fill out in advance….

UCL q', circle symptoms

I circled 30 out of 48, and wrote a note against a further two. Most of my friends with autonomic dysfunction said they would have circled a similar amount of symptoms.

There was also this set of questions…

UCL q', delete as appropriateI only answered ‘yes’ to 4 of these. Although I can do ludicrous stretches with my legs, can bend over to put my palms on the floor without bending my knees and have sublaxation of my shoulders and kneecaps, I do not have any ‘double jointedness’. Most of my hypermobile friends answered ‘yes’ to more of these than I did.

So that was the preliminaries. Now for the appointment itself…

The appointment was for 9.30am. In London. I live on the south coast. Eek! So the alarm went off at 5am… Magic Dude and I saw the sunrise on the way..

Sunrise on the way to UCL

Once parked up and braced for the usual extortionate parking fees we headed off to UCL. After nearly passing out in the bathroom I sat in the high ceilinged entrance hall and found that I had a tall wall of modern art in front of me to look at while I waited for the world to settle back into place…

UCL wall art

As we were fortunate enough to not get to caught up in too much rush-hour traffic we headed straight to the canteen for a coffee for him and a cuppa for me. As a long-time Tea Fiend I was a little disappointed with the size of my teacup! 😉

UCL coffee and tea

As with the neuro appointment, the appointment time given in the letter was not actually the time I would be seeing the consultant as they tend to take some tests beforehand. Here I was weighed, my height was measured and I was asked to head off to the loos to produce a urine sample for testing. There was nothing untoward in the urine sample but then again they didn’t forewarn me to hold it in for a decent first-wee-of-the-day sample so they didn’t really have much to work with! ;-P

Then the next stage was to see the consultant.

Consultant appointments for those of us with multiple aspects to our conditions basically means discussing only the aspects which fall into their specialist area. I had seen the neuro consultant, had the autonomic tests related to that and now I was with a rheumatology/hypermobility expert to discuss only musculo-skeletal issues. It can be pretty frustrating having to work in this way when we are used to the fact that everything is interrelated, but it’s just the way it is, they cannot make guesses outside of their area of expertise. They can, however, refer us on if need be.

So… I saw a super professional expert who began by finding out parts of my medical history that related to the injury that caused my CRPS and how the disease developed and spread through my body. A ‘what happened when’ question and answer session to help them build up a picture. As hypermobility can also cause issues with the autonomic nervous system (ANS) I was hoping that she could have some insights on the autonomic hassles I’m currently experiencing, but she was focusing on musculo-skeletal issues only so that is being dealt with separately (and I will write a separate post about that side of things).

I was twisted round, bent over, asked to walk up and down the room, had my skin pulled and all sorts! But the consultant was incredibly gentle and careful. I experienced no exacerbated pain from her assessment.

The outcome was that I have localised hypermobility in my trunk. It’s possible that it is so localised partly because I have worked so hard at the physio’ generally but have lost some core strength owing to near-fainting (as it has prevented me from doing any abs-strengthening exercises for some time). As usual I was told that I was doing all the right things and that there was not much more that could be done because I’ve covered it all so well.

The suggestions that will be in the letter that gets sent to my doctor will be:

– a very small dose of amitriptaline a couple of hours before bed. The reason for this is to help me to get better quality of sleep which should impact positively on pain levels etc, and the reason the dose has to be so small is that it interacts badly with SSRIs (which I am currently taking to help stabilise my ANS). I will, of course, do some research on this before I have an appointment with my doctor to discuss it.

– aqua-aerobics. The reason being that the Tai Chi is fab’ physio’, but that the non-weight bearing of being in the water could help other aspects as well. (The original suggestion was swimming, but I can only thrash and sink so the aerobics enables my feet to stay on the ground! 😉 ) The simple problems here will be cost in finances and managing to get out of the house for more of my physio’s, plus cold hurts my body and swimming pools tend not to be very warm. Could be tricky, I’m gonna put this one lower down the list of priorities and work down the list towards it.

– that I am referred to a TMJ (temporomandibular joint disorder) specialist regarding my jaw problems (which are currently being exacerbated by my meds and this is part of what I will be writing about in another post very soon).

In addition to these suggestions I was sent for a blood test and an x-ray to give her more information on my health status.

The x-ray was specifically for the consultant to see if I have shallow hip joints (which I’ve been told before that I have, and it also runs in the family).

The bloods will cover a lot of angles, including B12 and vitamin D, and is even checking for low levels in certain things owing to me being a veggie. Pretty thorough, eh?

The overall experience was one of efficiency and care. Who could ask for more, eh? I’ve had some pretty awful experiences with hospitals over the years but this one had systems in place to cover everything that I needed that day. I commented to the radiologist about how efficient everyone had been and she chuckled saying “Really? You should have been here yesterday!”. Sounds like I was lucky enough to be there on a quiet day! 😀

UCL day, tea after blood test

Mulling the appointment over tea afterwards, Magic Dude said that the appointment wasn’t what he expected. He had been expecting some sort of advice or treatment that could help with my day-to-day experiences and pain levels. He was not prepared for a patient in need of help getting the ‘you’re doing great’ response.

I, on the other hand, have a habit of hoping for the best and preparing for the worst! My hopes for consultant appointment outcomes are generally to get more info’ and understanding on what and why. I’m basically looking for clarification. After all, it’s me at the centre of my healthcare – I’m the only one doing the multi-specialist thing in the middle. So it’s important that I learn more about what’s happening in my body to be able to explain it to other medical practitioners and piece it together with my existing understanding.

Essentially I’m looking for more pieces of the puzzle that will help reveal more of the picture. I’m used to dealing with surprised consultants trying to find out how on earth I know so much and I’m used to being told that I’m doing pretty much everything I can already. But I’m in this for the long-term haul, every snippet of info’ and advice counts, this is how I help myself when all the usual treatment suggestions are moot.

UCL hospital

Bye bye UCL hospital

If anything progresses from this appointment I will let you know. I know that several readers are heading towards hypermobility assessments as well so good luck on your journey, I hope that this helps prepare you a little.

x

Invisible Illness Week: my 30 things…

So there I was in some public loos the other day. I wombled over to the sinks to wash my hands and blearily looked up at the mirror whilst I was there to see whether I still looked human, hehe. But, what the….? I had no reflection! I could see the reflected doors to the cubicles that were behind me, but I wasn’t reflected. Egads! Is this the reality of living with an ‘Invisible Illness’?!

Invisible illness, no reflection

Oh. No. That’s not it. Can you see what really happened?! 😉

This week is ‘Invisible Illness Awareness Week’. There are hints of my health conditions if you know what you’re looking for, but otherwise they’re below most people’s radar. Unless I’m actually using my wheelchair most people would be hard pressed to comprehend that I am disabled.

So I thought I’d reply to the ’30 things’ that get asked during this week each year. The official website says it’s ‘National’ awareness week, but we know that that means international to us cyberpeople, right?

Okay, here’s my responses to the 30 questions…

1. The illness I live with is: Complex Regional Pain Syndrome (CRPS), Autonomic dysfunction (Dysautonomia) and hypermobility (I’m off to see the hypermobility / Ehlers Danlos Syndrome consultants tomorrow)

2. I was diagnosed with it in: October 2005 (‘it’ being CRPS)

3. But I had symptoms since: my injury in August 1999 (a mere swollen knee!)

4. The biggest adjustment I’ve had to make is: trying to not feel as if I’m no longer ‘useful’

5. Most people assume: I’m not ‘that bad’ generally and that if I seem okay I’m not experiencing any symptoms or pain

6. The hardest part about mornings are: very carefully getting my body up and functioning for a physio’ without making my symptoms flare up too much

7. My favorite medical TV show is: Ick! I can’t look! The only medical stuff I’ll watch is if it is scientific and informative (and even then I’ll hide my eyes if there’s any squidgy / icky moments!)

8. A gadget I couldn’t live without is: my laptop! I love you Possibly-Betsy! (Oh yes, and the wifi)! (Please feel free to make any alternative suggestions for naming my laptop! 😉 )

9. The hardest part about nights are: trying to get the pain low enough to be able to get to sleep. It takes aaages and then I repeatedly wake up through the night. Fun times!

10. Each day I take __ pills & vitamins: 2 meds and 7 vitamins / supplements

11. Regarding alternative treatments: My conditions mean that multiple systems in my body are dysfunctional and very sensitive to changes. Adding pharma chemicals into the mix is problematic and incredibly complex. So I will only consider taking meds if the potential for quality-of-life improvement outweighs the potential problems (and then I have to try it to find out if the side effects are worth it too)! Alternative treatments are a great resource… for example: once we become aware of the damaging effect of the excessive number of free radicals in CRPS bodies, then it is important to increase our anti-oxidant intake – we can do this through food but the amounts required mean that most of us take supplements as well (like CoQ10). This isn’t something my doctor is aware of, it’s something that expert patients find out through diligent scouring of research and sharing of information, the doctor sees these kind of supplements as alternative, not mainstream, not medicine. Whereas we see them a a perfectly sensible scientific response to our inner chemistry and long term prognosis. So, as CRPS is so complex and multi-systemic, there are actually some very useful alternative resources which can help to rebalance our very unbalanced chemistry. I’ve also had acupuncture, which is often seen as alternative therapy, but my treatment was as part of mainstream medicine in the NHS. So ‘alternative’ can mean different things depending on the viewpoint. With conditions like this: research and try things out, and the less chemicals we put into our body the easier it is to rebalance our unbalanced systems. I even have friends who are healers who have offered me healing, and friends who are religious who have offered to pray for me, and I figure.. why refuse?! x

12. If I had to choose between an invisible or visible illness I would choose: That’s a tricky one. I kinda have bits of both and it varies depending on how symptomatic I am, or whether people see me during my physio’ time or when I’m recuperating afterwards. Having an ‘invisible’ illness means that people don’t treat me any differently, which has it pros and cons as sometimes I need people to be aware of my limitations as I can’t do everything that other people can do, and I need them to avoid doing things that can cause me problems (the slightest touch on bad days can be a problem). Whereas the times where my illness is more ‘visible’, for example when I’m using my wheelchair or crutches, means that people react very differently to me (there’s a whole blog post in that concept alone, which I’ll get to!). I think that the fact that I have aspects of both is probably pretty good, as those around me get to see me as both.. and then the consistent aspect is me, rather than a health issue that is either visible or not.

13. Regarding working and career: 6 years of living with CRPS and I had to give up work, I got my diagnosis soon afterwards. I carried on working towards my goal of training as a Clinical Psychologist with the intention of completing post-graduate training in neuro-psychology (so that I could help to support and empower head-injured patients and their families). It soon became apparent that full-time was out of the question, and that maybe even part-time work would never happen either. I’ve just completed my masters degree in research by studying from home. Living with my health conditions is a full-time job, everything else is ‘as and when’.

14. People would be surprised to know: just how bad my brain issues get at times. If I didn’t understand why they were occurring I would be really really scared… Not understanding people, missing fundamental concepts on conversations, losing my vocabulary, no longer being able to spell, not remembering ever seeing a film that I went to see with Magic Dude just a couple of weeks ago, and so on. Most people think I’m really intelligent, haha! I still have the same intellectual capability when I’m not symptomatic, but I am symptomatic to varying degrees all of the time now so, yeah, most of the time I am not the brainbox that my friends say that they think I am!

15. The hardest thing to accept about my new reality has been: not getting to be a Mum. There are no words to describe the sadness that I am trying to put to one side for the moment. Part of me still says ‘maybe’, and then the rest of me laughs at that part of me for being such a blinkered soppy girl because I’m just not well enough. I adore being an aunty to my Magic Dude’s two nieces, and hanging out with my friend’s 4 year old, and another friend’s one year old, I just love love love it! So that will keep me going, I embrace my aunty-ness! 😉

16. Something I never thought I could do with my illness that I did was: Start learning Kung Fu! The Tai Chi started a couple of years ago but I’d written off what I thought of as fast-paced martial arts that would involve bodily impact. I never knew I’d end up with such an awesome teacher that is used to working adaptively for people with various injuries and health conditions. 🙂

17. The commercials about my illness: Haha, what?!….
“Try new improved CRPS for all your screaming needs. The pain is shown to be so severe it is even champing at the heels of terminal cancer. With additional multi-systemic complications and extreme comorbidities… Try new improved CRPS, now! Available for all ages.”
*ka-snort*
In the UK we have adverts for health charities I suppose, but not for health conditions. And the info’ on CRPS is rarely comprehensive even when someone medical has actually heard of it. Hey, maybe adverts is a good idea after all….
“Have you turned away a patient in pain that looked healthy? Have descriptions of extreme pain from minor injuries baffled you? Has a patient described a paradoxical set of symptoms that make no sense to you? You need to know about CRPS! Call now for training…”

18. Something I really miss doing since I was diagnosed is: seeing my friends (with the exceptions of Magic Dude and my Local-Friend-for-Local-People, I see them quite a bit 😉 )

19. It was really hard to have to give up: my future career

20. A new hobby I have taken up since my diagnosis is: Tai Chi

21. If I could have one day of feeling normal again I would: Do the adventure playground thing clambering through the trees, go cycling/walking/jumping/skipping/dancing through the countryside with Magic Dude, and then dance the night away in a rock music nightclub!

22. My illness has taught me: a lot of chemical biology and neurology that I never realised I would need to learn!

23. Want to know a secret? One thing people say that gets under my skin is: when “people” is doctors……. when doctors say “I’m sure it’s not that bad” and dismiss the issue

24. But I love it when people: have respect for my health management skills, attitude and informative input

25. My favorite motto, scripture, quote that gets me through tough times is: “This too shall pass”

26. When someone is diagnosed I’d like to tell them: The so-called ‘stages’ of CRPS/RSD do not exist – they were dropped back in 2005ish as they just didn’t apply – so don’t be afraid – you’re not on an inevitable slippery slope, you’re on a journey with a condition which can be calmed and worked around. I’d also like to send you lots of love and let you know that you’re not alone, there’s a lot of fellow patients out here if you need us, xx

27. Something that has surprised me about living with an illness is: how blummin’ determined and capable it turned out I was! Who knew?!
Also.. how inner peace turns up in the crappiest situations, how joy shines through severe restriction and limitation, how those who abandon ship can be people that we thought never would and how those who choose to remain or step into our inner circle are some of the most beautiful souls we’ve ever known.
I know myself better now than I ever did, and I have a path to tread. Illness is not the end. It is change. And I am more ill, challenged, pained, symptomatic, aware, at peace, stubborn, quietly confident, filled with love and happy now than I have ever been. Paradoxical much?

28. The nicest thing someone did for me when I wasn’t feeling well was: Knowing that I might not be tip-top, asking me if I was okay and to let them know if I needed anything, x

29. I’m involved with Invisible Illness Week because: I live with several invisible illnesses, I blog about my experiences, I research the conditions and share what I find with other patients, I spend a lot of time doing advocacy work for fellow patients, and because the ideas of disability are generally based on false concepts of visibility and consistency.

30. The fact that you read this list makes me feel: Honoured, x

.

Ev’rybody was Kung Fu fightiiiing

So… I have news…!

As many of you will know I’ve been spending some of my crucial physio’ time learning Tai Chi for the past couple of years. I’m still going, that’s not the news, no change there. Although, news-wise, I’ve just learnt the final moves to the Sun Style 73 form, and I’m also learning the Yang Style Sword 16 form. Wheeeeee! Love it!

My teacher and her business partner have various martial arts classes taught at their club, not just Tai Chi. Of course most martial arts are fast and waaaay beyond me in terms of fitness and health requirements. Classes include Kickboxing, Muay Thai and Mixed Martial Arts.

But a while ago they started a new class which massively overlaps with Tai Chi. It’s not focused on fitness, but instead on technical aspects. It’s a mix of Chinese Boxing with Kung Fu. After some discussion with my teacher I decided to give it a whirl! *gasp* Which basically means that I get to apply my Tai Chi knowledge, learn some new moves, feel safer for knowing some self defence and it allows me to push my physio’ within a safe environment.

Many years ago the first physiotherapist I saw at a hospital told me that I should be able to do anything within my physio’ time even if my pain levels then go up and I keel over later. Of course that was also the physiotherapist who decided by herself that my diagnosis from the national specialists was not actually true, so she worked on the assumption that I had a common or garden type of chronic pain rather than the multi-systemic reality of CRPS. *sigh* Don’t worry, her boss knew the score and I worked around her! But as I’ve worked at the physio’ pacing over the years I have found that I can do more during my physio’s on less symptomatic days as long as I stick very carefully to the time limit. I inevitably experience greater pain and symptoms post-physio’, but if I am consistent and don’t push it too much this actually helps to keep my pain levels from soaring as high as it used to overall. (Which, for a CRPSer, is pretty good)! As long as I spend the rest of the day resting and recuperating (which I have to after any physio’s anyway). Being trapped on the sofa on painkillers is my reality whatever activity I do during my physio’ time, so a fulfilling physio’ helps me cope with the recuperation time.

It helps enormously that my teacher has worked with me in Tai Chi for a couple of years… she knows me well enough to know that I push myself too hard sometimes and so she reels me in a bit! She also is pretty good at spotting when I’m having a symptomatic day, and knows when not to pick me up on certain types of errors because they’ll iron themselves out when I’m feeling better. Although she does not know lots about the complex condition (I mean, it’s not like it’s a ‘common knowledge’ kinda condition!) she has taken on board all sorts of information about the kind of problems I’m trying to work around. Yep. Basically she is a Superhero teacher!

So I’ve been attending these Kung Fu lessons once a week and learning how to deal with things like someone grabbing my arm or my top (handy arm locks with minimal effort), how to apply the kind of moves I’d previously only learnt in slow mo’ (like sweeping someone out of the way with minimal effort), and different kinds of blocks and responses to someone moving in to throw a punch or a kick (in slow mo’ because I can’t react to it fast yet 😉 ).

Kung Fu is all about technique and it’s defence-based. So moves begin with a block and then respond in very straight forward ways to use the attacker’s move against themselves. It’s about the quickest ways to relieve yourself of your attacker so that you can exit the scene safely. My teacher is used to working around students with injuries and/or health limitations, so I really thank my lucky stars that I flukily ended up in her class at the gym as it turns out that it was the beginning of a journey I could never have guessed at the time. 🙂

I guess you may have heard of the phrase “once in a blue moon”? Well, yesterday there really was a blue moon (four full moons instead of three during this quarter of the year) and one of those ‘once in a blue moon’ things really has occurred…..

I have been awarded a white sash in Kung Fu!

Wheeeeeee!

Kung Fu white sash

Although I have been considered a bit special for a while as I’ve found it really hard to think fast after the controlled Tai Chi forms, I am hoping that if I slowly practice the moves during physio’ time that I may continue to improve.

It makes no difference to my condition other than a different type of physio’, and it makes little difference to my disability except that I am experiencing a bit more fallout pain-wise (but that’s for me to deal with, my inability to function the rest of the day is no different to usual in practical terms). It does, however, make me feel less vulnerable, allows me to feel more confident, to meet more people, to add to my Tai Chi with greater knowledge of how the moves are used in applications, to feel proud of trying something new and (hopefully 😉 ) progressing, to give me new goals to work towards, to share something martial arty with my boyfriend (because his Kickboxing classes are for crazily fit people only!). It is adding value to me and my life and that’s what is important. I also have a background hope that it will help to build a little muscle to reduce the partial dislocations, too (<crosses fingers>)!

I am very happy to have earned this sash. If I didn’t know better I would think they were being kind to me, but I do know better – they make sure that everyone is up to standard and then some. So I guess I must’ve actually earned that sash. I wonder if I can earn the next one? It might take me a while…. there isn’t another ‘blue moon’ until 2015! 😉

x

Oh yes, and on other news…. I’m on the Tai Chi team for the club. Bring on next year’s nationals! Who says a chronically ill disabled girl can’t compete for four minutes at a time and win some medals?! hehe 😀

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!

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!

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.

ECG monitor, with matching bag and arm cuff!

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!

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 last November :-)

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)

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

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.

November journey 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