Keep a Pharmacist in your health loop

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

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

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

A good pharmacist is worth their weight in chocolate!

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

Blood test thumbs up

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

Lotsa love from me,

x

Raising CRPS awareness: ‘adverts’ and Crazy Sock Day

In the UK our TV adverts are meant to sell things. They aim to get us viewers to spend money on products, send money to charities or spend time watching certain programs.

So imagine our puzzlement when we come across fellow patients online talking about ‘adverts’ for illnesses! Our context is that adverts are to sell stuff, and our minds immediately boggle as we wonder what on earth someone would ‘advertise’ an illness for? I mean, who goes shopping for health conditions?! 😉

Well yesterday I fiiiinally found out what these are. They’re more like public service announcements delivering a snippet of information on a specific condition. They can’t squidge much into such a small space of time and, let’s face it, CRPS is so complex that a day at a conference wouldn’t cover it. So they have to go for a bottom line as the potential identifier. The RSDSA has done just this, the bottom line is that if we’ve had an injury with a disproportionate amount of pain then bear in mind CRPS. Here’s the new CRPS info’ video…

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And yes, it is Crazy Sock Day today, and I am wearing some knee high stripeys in honour of Melanie’s awareness day for CRPS & Gastroparesis. 😀

Crazy Sock Day 2014

And here’s the crazily socked feet of some friends as well….

Rory's Fbk offering

Jona's Fbk offering

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Happy Crazy Sock Day people, please do visit Melanie’s Facebook page and feel free to post sock piccies on there in support of her awareness event, 😀

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Raising awareness through the awards programme, x

Getting nominated for a blogging award is awesome! It’s not why any of us become health activists, mind you. We’re driven simply to help people with certain health conditions – to know that we’ve helped in some way is the all the reward we were hoping for and all the reward we need. But apart from making your fave health activists go all warm and melty and start claiming that “no, no, of course I’m not crying, I’ve just been cutting onions, that’s all. Honest!”, it also means that other people out there, maybe other patients who’ve been looking for us, get to hear about links to reliable websites, blogs and research papers. In the case of CRPS it also means being able to let other people out there know how to help try to avoid it developing in the first place. Wow!

I wrote recently about nominating for your fave Health Activists online as it’s the season of WEGO Health Activist Awards again. Share the love this winter. Trust me, these nominations really warm the heart because none of us do this for any return, all health activists do what they do because we want to help others. The ultimate return is that we manage to deliver writing / links / research information / chuckles that help. Helping is truly it’s own reward, anything else is extra.

So when I got nominated for a fourth award I pretty much keeled over in happy surprise!

Here’s the awards that you wonderful, lovely, kind, sparkly people have nominated me for…

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Best in Show, Fbk (2)

Wowee!

But the awards are also a wonderful way to raise awareness. CRPS, Dysautonomia and Hypermobility are more common than generally thought and there are fellow patients out there still looking for reliable information.

I have found that other bloggers I’ve met along my journey are also voting for other activists just as I have been. I love that there is no unhealthy competition, we all share the same aim – to raise awareness and help others. To help as many people as we can.

This year the first three bloggers for each award with the most endorsements automatically become finalists. Nominees can be endorsed by clicking on the button under their picture on their nominations page, (e.g. mine is here, and all other nominees are being added to the directory as well). It turns out that we can each endorse a nominee once a day, and the suggestion is that we ask our readers and friends to endorse us once a day every day! Cripes!

Of course the activists which have the most common conditions will have many more readers owing to there being many more patients. Which leaves the rarer and lesser known conditions behind.

Last year there were six finalists for each award so this year the remaining three finalists for each award will be chosen by the judges on a points system. So there is still potential for a good health activist, with good presentation and information, to get chosen by the judges.

So… I’m crossing my fingers and asking you, my lovely readers, to click on the ‘endorse’ button for any CRPS and/or Dysautonomia bloggers that have been nominated who you’d like to support for this years awards.

Big hugs and thanks from me,

x

It’s health activist nominations time!

Yes, it’s that time of year again. It’s time for the third annual health activist awards when we get to vote for all of our fave health activists / bloggers out there who have made a difference to us patients. 😀

wego-health 2013

I’ve been happily voting for bloggers, it’s so fab’ to get to share the love 😀

All you need to do is follow the link here and add the weblog (or Twitter or Facebook information depending on where they write and post), and click on the award that you are nominating them for. You can do so anonymously if you prefer. When asked for the nominee’s contact info’.. an email, Facebook page or Twitter account are all ways for WEGO to let them know that they’ve been nominated.

Of course if you want to vote for little ole me I would not complain! 😉 In fact some of you must’ve been busy as WEGO Health have informed me that I have been nominated for three awards…. wheeeeee!

You can ‘endorse’ me on my nomination page if ya like. Only one of the awards I’ve been nominated for is showing on there at the moment, though, so here’s the relevant prettification for this post…

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I started by nominating someone for a health geekery award! There’s one blogger who ‘geeks out’ at research even more than I do so I just had to get in there and vote, hehe Go on, share the love people! 😀

x

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It’s not all in your head!

There are two parts to today’s post again.

WEGO’s health blog challenge: “What’s the most ridiculous thing you’ve heard about your health condition?…”

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The most ridiculous thing I’ve heard about my health condition(s) is the shuddersome concept of… “it’s all in your head”!

Yep, we really get told this in some appointments. Sometimes it’s merely a medical practitioner trying to explain autonomic pain amplification and doing it reaally badly! But often it really is as extreme as it sounds – genuine physiological symptoms get written off as psychologically founded.

Fortunately there is oodles of research these days about how psychological effects in the kind of conditions that I have are often caused by living with the condition itself. So we have plenty of research papers to back us up, the only problem is that we have to be the ones to find and share this research because non-specialist medical staff have often not come across them. (See my ‘What is CRPS?‘ page for some handy research paper references, and the explanation about interpreting anxiety symptoms wrongly applies to Dysautonomia patients, too).

It is important for our doctors to remember that an understandable reaction to chronic health does not necessarily mean mental health issues. We should not have to hide when we are struggling owing to fear of getting mislabelled.

Of course health conditions and mental health issues are not mutually exclusive: it is entirely possible for them to co-exist. This is not an black and white area, shades of grey are the norm, but even without any mental health issues at all patients with chronic health issues should still be supported both physically and mentally for the simple fact that severe long-term health problems are, at the very least, very challenging in the life changes they effect. It is an important part of living with a chronic condition to be able to find ways to keep going, to find new meanings, new value in ourselves, new ways of living and of finding joy in life. With the addition of some handy psychological tools we are much better equipped to handle our situation.

I’ve heard the “it’s all in your head” idea many times. I’m a veteran of appointments where it turns out that I know more than the practitioner, as do many of us with specialist conditions. I have the scientific info’ to undermine their erroneous comment in the sweetest most helpful-patient kinda way! 😉 (feel free to add a comedy evil laugh here!) Ohhhh yes, get in the know peoples, doctors like data so data them towards the corrected viewpoint! Most doctors just haven’t considered the possibility that a faulty ANS can cause anxiety symptoms without any pre-existing anxiety, but once you point it out it makes perfect sense to them. It’s just showing them the alternate angle that they have to think from because our conditions don’t fit neatly into the main themes of medical diagnosis. They check out the organs and do blood tests for normal stuff but everything comes back negative so they think “there’s nothing actually wrong with them… it must be psychological”. But what they are forgetting (because it is not something taught as part of main medical training) is that if it’s not the organs… could it be the wiring between them? They need to run different tests to find out.

The trouble is, of course, that we tend to learn this kind of helpful knowledge retrospectively. Years after we were told it was all in our heads, years after we cried for the lack of support from a doctor when all we wanted to do was be able to get on with our lives, years after those around us doubted that there was anything wrong with us because our doctors didn’t think there was. Years later we find out why the doctors made that error, and we try to pay it forward by sharing the knowledge with our fellow patients who are still early on in their journey. To try and help them avoid the pointless pain and waiting that we had to go through simply because doctors only conducted the usual tests and the negative results falsely led them to think that it was “all in our heads”.

Photo challenge #6 – “…something you let go because of CRPS/RSD”

Clinical Psychology2 (2)

(source)

I was retraining for a career when I had to give up work. I studied for the required degree in my own time whilst working full-time, (thank-you Open University 😀 ), but before I had completed it I had to give up work. I carried on, graduated, then started my masters degree. I did not realise I would never be able to work or study full-time. My choice of career is no longer viable. But my training was in psychology and in research, my intention was to complete the Doctorate in Clinical Psychology so that I could study the post-doctoral training in Neuropsychology. My aim: to help inform and support patients with head injuries as well as their families.

Losing that future was devastating, but it looks like I have ended up with some pretty useful skills to make myself handy to my fellow patients. Letting go of the career I had worked so hard towards was horrible, but I’m on a different path now, and I can do a lot of good on this one as well, x

Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

x

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I like to be useful!

I’ve had a huge spike in blog visitors over the last few days and the popular post getting viewed a lot has been my representation of the McGill Pain Scale. My version is unusual because I’ve added an additional figure onto the scale – that of Fibromyalgia. It’s not a figure that we usually come across, and I found the information in one research paper which means that it’s a ball-park figure (only one sample group from one piece of research) but can still be helpful to some patients to share with others as many people still incorrectly think of Fibro’ as some sort of psychosomatic condition. It’s not. At all. There is plenty of scientific evidence to show to any doubters, but sometimes being able to show a quick piccy of the pain scale to demonstrate that the pain is scientifically ‘real’ can be a speedy and simple way to help someone to re-jig their understanding and treat Fibro’ patients with more thought.

The post is by far the most popular one to date (it includes CRPS as well). I am so pleased that fellow patients out there are finding it helpful. That is why I started this weblog in the first place, to share information and be as helpful as I can from my spot on the sofa with my laptop and my occasional brain!

I didn’t realise that a link to the post had been included on the Fibromyalgia News website, though. Not until yesterday, that is. Wow! Thank-you. That is good feedback suggesting that I’m on the right tracks and am managing to be useful. Exactly what I hoped I could do. 😀

There’s lots more to write about still, I shall keep on writing for as long as I can still be useful. Big hugs to you all, x

2013-10-27, Fibromyalgia news

2013-10-27, Fibro news

Photo Challenge for CRPS Awareness, Day 26

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

Day 26 – A picture of laughter you gave to another

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Hmm, tricky. Our individual humour varies, and the event that causes the laughter tends to not get caught on camera. I tend to share silly pictures on social networks that make me laugh because it may make some of my friends laugh too. I have daft conversations with Magic Dude and we each come out with responses that make the other laugh. Sometimes I’ll take a photo’ of something that I find comical or bizarre and share it. So here’s an example of one of those, this pic’ is of a random chuckle moment that I shared online…

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Marvel Avengers Ass

The mind boggles!

In fact this film experience was a wonderful sharing of laughter and enjoyment with the rest of the audience. So much so that I wrote a post about. 🙂

x

Photo Challenge for CRPS Awareness, Day 11

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

Day 11 – A picture of your pain

At any initial medical appointment, especially a physio’ or pain management one…. filling in a form which includes outlines of the human body along with the request: “Draw a circle where it hurts”

Haaaahahahahahaaaahaaaahahahahahaaaaahahahaha!

Seriously?

Okay….

body chart, circles where it hurts!

Hehehe! Now you see why I was laughing at today’s photo challenge, eh?! I reckon this is rather overwhelming and confusing for a medical practitioner to look at on first contact with me so I keep it simple….

…when I am handed a body chart and asked to circle where it hurts I tend to simply do this….

body chart, circle round whole body with note

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It gives them a chance to readjust their way of thinking and then ask me whatever they need to!

Although really this would probably be more informative…

body chart, it all hurts! !

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

Fbk page

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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