Today’s photo challenge is to post something which includes flames, as they are often used to symbolise the burning pain experienced in CRPS. As I created the firey flaming CRPS awareness ribbon the other day I have put together another couple of info’ posters using that but I have made a point of adding in something else so that more of us CRPSers feel represented.
Many of us experience a different kind of burning. An icy burning. Sometimes it occurs as part of the CRPS doing it’s thing in our affected areas and sometimes it is triggered by an external source (for example I have to wear gloves to get anything out of the freezer coz it burns so much). (Wow, that’s not a good font to write about burning in, it looks like it says ‘bums’, oh dear)!
Of course there’s not really a ‘one or the other’ scenario. Despite recent research rumblings about ‘hot’ or ‘cold’ CRPS as either potential subtypes or as a way of referring to acute and chronic CRPS, many of us experience both the hot and cold burning. So for a large percentage of CRPSers the hot and cold representations are a truer representation of our personal experience with the condition.
Anyway, I have created two more info posters using exactly the same info’ but with an additional cold theme. One with an iceberg, and one with a background pattern of the icy frost that forms on glass. Here’s hoping you like them.
I’ll add them to the Fbk blog page as well so that if you feel they are useful to share they are at least easily accessible.
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…
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.
When we find ourselves diagnosed with something we’ve never heard of and our doctor seems to be unable to clearly explain what on earth it is, what do we do? Many of us turn to the internet, but health information online is of variable quality, and even more so when research bounds onwards in new understandings whilst many websites are not updated with this new information.
So what do we do then? Who out there has heard of the condition and has some clue about symptoms, prognosis, the whys and wherefores? How many of us actually get to see a specialist in CRPS? I was diagnosed by a very good limb-reconstruction specialist, and I’ve seen some general pain management teams, but never a CRPS specialist.
Another reason we may look online is for someone, anyone, who understands what we are going through, who can reassure us that we’re okay, that’s it’s not ‘all in our heads‘, and that the sorts of stresses and strains which we are experiencing are common for other patients too.
Of course the nature of the internet means that geographical boundaries no longer restrict who we meet or how far good information can be shared. There is effectively an informal international support network of CRPS patients all helping and supporting each other. And for those of us who find the right groups for our needs and temperament, and the most useful pages with correct contemporary medical information, the effects on us can be positively life-changing.
The impact that this has is that a large number of patients internationally who were previously often isolated and looking for information…. now have access to regular contact and support, and can find research, discuss aspects of the condition, talk about potential treatments and indeed anything that they wish to talk about.
This is one heck of a turnaraound for patient experience.
An ornament on my mantlepiece from one of my beloved international friends, x
I have met some awesome fellow CRPSers who admin’ in support groups, raise awareness, blog and info’-share as advocates for fellow patients. The slower speed we have to work at owing to our health issues never detracts from my excitement at the potential though. How can I not be excited? – I am part of an informal network of CRPS patients who have professional skills in nursing, pharmacology, occupational therapy, alternative medicine (which is especially important to patients allergic to mainstream medicine), nutrition, research, writing, psychology, counselling, ohhhh my goodness this network of awesome and beautiful-souled people is an absolute treasure trove!
We gravitated towards one another because we recognise each other as determined information-gathering/sharing advocates. There’s no formalities here, we’re just people who got to know each other, liked what we found in each other and we often come together to help others.
Some of the people in the network work hard at raising awareness, sometimes that is through social media, or wider media, or through creating and selling awareness jewellery. Others in the network blog and maintain websites. Some carry out research, and others support that research (sending another moment of thanks to my super-coder, who is a CRPS carer, and to my fab’ coding and statistics advisor 🙂 ). Pretty much all of us are involved in admin’ support alongside the other things we do.
Pause for a moment to remember that these people are so terribly chronically ill, with multiple issues across various systems in their bodies. They often are unable to work because they cannot guarantee being able to work at any given time on any given day. So all this wonderful work they do to help others is done around immense pain and often additional challenging issues such as fainting, severe nausea, the understated brain fog (which one of my friends refers to as full-on London brain smog when it gets so bad that we can’t function!) and this means that it can only be done as and when the body allows. Which isn’t very much. So the amount of time that they battle through the symptoms to even just be there for others says a lot about how much it means to them to be able to help fellow patients.
These are truly awesome people.
And they just so happen to be from all over the world.
Modern technology, including the rather handy online translating applications, renders geographical distance a mere annoyance. In fact it’s not so much the network of advocacy which is affected, because that works amazingly across time zones, across language barriers, across cultures and more. No it’s really just the fact that we can’t all meet up for teas, coffees and a face-to-face natter that really bugs us about the geographical distance!
The world appears to have shrunk since I met you all! Other countries now feel like they’re ‘just over there’ instead of a whole world away! It’s a wonderful feeling that we are all coming together like this. My own personal world is very much better for you all being in it. Thank-you, x
The love, the gratitude, the admiration, the respect that I feel for these amazing people is something that lifts me on those days where the health issues are more challenging than usual. They’re out there. Kicking CRPS arse! Making a difference to other patients around the world. And when they’re facing a flare-up day they know that I’m still out there doing what I can, too.
The international aspect is a positive boon as the varying time zones (plus all of us who can’t get to sleep!) means that there’s always people out there.. 24 hours a day, 7 days a week, who support, share information and answer questions – who do whatever they can to help fellow patients online.
My initial mini network of international friends. We still get together for natters on Skype and regularly communicate in group chats online, these are some of my bestest buds 🙂
Initially I was just me doing what I could to help others. Then I met some fellow patients doing the same and I became part of a group of friends doing what we could to be useful. And as time passes the connections naturally build up. We meet other admin’s during our admin’ roles, we come across other bloggers and awareness raisers when we join in with various photo or writing challenges… and so the network keeps growing. Think of all the little networks, and imagine each network having someone who meets an advocate from another informal network… they get to know each other, and maybe some others in each of their networks do to, and before we know it the network has extended.
I adore the advocates I’ve met, we have the same goal in our heart: to help others. That one thing says a lot about our personalities.. so it’s not surprising that we help each other rather than butting heads! This isn’t business, this is heart, and morals, and ethics, and love. And that crosses international divides without missing a beat. The common denominator is helping others, it’s about being human, about caring. And that steps past any differences that we might have in geographical location, or culture, or the type of healthcare system we have in our country, or even language.
Our hearts are aligned, and we put our heads together to be as helpful as we can.
Every one is a lovely caring soul who I am honoured to know.
And if you think gentle souls can’t be determined then think again, because this is a network of CRPS survivors, many for more than a decade already, so we’re more like a group of cupcake baking, fairy-winged terminators! 😉
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Other bloggers in the network posting today, too…
Yes this very day, the 22nd November 2013 🙂 , some of the bloggers in this informal international network are also writing a blog post on the same theme and we’re all posting to our blogs on the same day. 😀 As each of them post their own articles online I shall add the links below for you. As we are in various time zones and working round health stuff the links will become available at different times so I’ll keep popping in to add more links as they become available, x
Representing my fellow patients in the unofficial UK branch 😉
And rather than leave this post solely with UK input from me… there are some quotes below from some wonderful CRPS patients in other countries who wrote a bit to be included in this post between their high pain levels and all the usual deadlines and pressures of everyday life – thank-you to everyone listed below, x 🙂
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Other blog posts on the same theme being posted today…
Sarah in the USA: currently multi-tasking, like the superhero that she is, having a Tilt Table Test today. Rest up hon, hope the results are helpful, xx
We may well ‘network blog’ on the same day like this again because we all enjoyed getting together to plan this trial run (by the way, we co-ordinated through Facebook, just in case you’re on there 😉 ), so if you’re a CRPS blogger and fancy joining in just drop one of us a line 😀
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Some input from CRPS friends outside the UK:
“Having CRPS can be very isolating, and when you are living in a small populated country like Iceland that can be isolating too. And when you have a rare disease in a small populated country you are not going to meet many people with same disease that you can share your experience with. So meeting people all over the world online and making wonderful friends has really made this CRPS struggle worth it all. My friends all have different experiences, have had different treatments and can share their experience and knowledge. When you are having a hard time then nothing is better than a Skype meeting with friends or a chat on Facebook. Different background, different culture, different country and different treatment can only bring more to the table and give you good advice. I don´t know where I would be at the moment without the social network, it has been the most helpful thing in my CRPS battle, at times more helpful than any doctor, making my battle bearable and it has kept me going.”
. – Jona, Iceland
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“To be part of CRPS groups on the Internet is really helpful for me. After I got diagnosed the doctors here left me alone. No explanations, no help, nothing. Then met all this CRPS warriors online. They helped me through the first time which was really rough. And I know without them I’ve never could have done it. I had so many questions and they’ve been there for me till now. We’re a group. We’re there for each other. I love it. Whenever I need someone who really does understand me I can go to the group and talk to them. They know what I’m going through. I got my stepfamily who are supporting me but they don’t know what I’m going through because they are not experiencing it. But these warriors, they know it. They’re in it too. When I’m talking about my blackouts, my flares. They know what I’m talking about. I don’t have to explain everything. And I met wonderful people there. Even my best friend! I love her! I visited her. Which was wonderful. It showed me that I’m still able to travel even though I payed a big price for it afterwards. But all these friends I met there….I don’t want to miss any of them ever again! I’m not alone anymore!”
– Noei, Switzerland
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“I am a Scottish woman, who has lived in The Netherlands for 14 years now. I have two amazing little girls, 7 and 8 years old. I am married to an amazing Dutch man (for 13 years now).
October 2010 at work a colleague pulled my chair for under my bottom. Which caused the tendon in my wrist to become detached. I had surgery soon after. However RSD/CRPS had already started.
I have RSD/CRPS type 2 – I have severe nerve damage from the elbow down to my finger tips in my right arm. The nerve damage caused my arm to decompose in 9 areas and has also caused me to spend 12.5 weeks in hospital in 2013 so far. This has an emotional effect on the whole family and friends.
RSD/CRPS is an everyday struggle I have never had pain below a 6/10 in 3 years. This is also due to the fact that I have rebound effect with almost all medicine for RSD/CRPS. I forget most things, I have lists all around my home for nearly everything, I used to have an amazing memory. I have at one point this year spent 2-3 months crying daily, not due to pain but grief over the loss of my life.
Around January 2013 my husband knew I needed more than my own friends and family and pain doctors, I needed to find others with RSD/CRPS who could understand me. I joined an online support group via Facebook, I can say with all honesty the group on one occasion saved my life and on countless occasions help me through the hard times caused by pain. I have made many friends who are also people with RSD/CRPS. We laugh together, cry together and also learn to express what no other person can understand, the emotional and physical pain connected with RSD/CRPS. I have spent time on Skype with others which is amazing, not just because typing is hard but seeing someone helps so much more than typing a message to them.
Without an international community of people with this pain syndrome I would be isolated still, alone, and so would many others. Thank you to you all, you are all strong, amazing, courageous people.
I hope pain management teams can read this blog and reach out to us all. Together we can fight this RSD/CRPS. However alone I feel we may keep struggling, both Doctors and patients.”
Today’s photo challenge is to share with you someone who inspires me when the going gets tough. Living online as well as off it has allowed me the wonderful opportunity to meet people I could never have met otherwise. The number of phenomenally inspiring people that I have the good fortune to know has risen rather sharply these past few years. 🙂
Today I have chosen to mention one in particular. Oceans separate us but we feel as if we have known each other for many years already. One of those friendships where you just ‘get’ one another, where each time we speak it’s like no time has passed, and yet the time between speaking still twangs at the heartstrings. We met courtesy of one of our health conditions, CRPS, so it’s been pretty darn good for something eh?! 😉 We had overlapping friends and ended up being admin’s in the same support group. Some of the admin’s decided to get together in a Skype chat, and that pretty much sealed the deal then and there! Seeing and hearing friends for the first time who have been loving and supporting one another but had never actually met in the 3D world was emotional, but in a good way. There were smiles and tears at the same time. The love, the understanding, the wicked senses of humour, all together in my laptop, right in front of me! It was a turning point for our understanding of friendships up to that point. 🙂 (You’ve met one of these awesome ladies in one of my earlier posts).
They’re my sisters, not by blood but by heart, and there are other friends who I would love to draw into this warm friendship group because their insight, their hearts and their humour would fit in so well. Ahhh, happiness!
Well anyway, there’s this one gal, right? She’s called Lili. She has a big bit of my heart that she’s settled into, and she’s there to stay. She’s ridden the rollercoaster ride of multiple severe health conditions her entire life. And despite the extremes she has had to go through she hasn’t lost her big warm heart, or her deep love and concern for others of any species.
Recently the lovely Lili started a weblog for her book which is in progress. With severe allergies her amassed knowledge of alternatives to chemical medications and anything else that could possibly have allergens in it, from foodstuffs to washing soaps is, quite frankly, phenomenal. Much of it is there in her head for instant retrieval because it is such a part of everyday life. I cannot begin to describe how pleased I am that this book of information and alternative treatments for chronic pain is in progress. Lili’s understanding of chronic health issues from pain to immune issues and beyond is so very valuable, and I am glad that the book will be available in the future for us fellow patients to dip into for insights that can help us.
(I keep saying that I want a signed copy, it’s my ‘excuse’ to meet the author in the 3D world! 😉 )
Whilst the book is in progress Lili is writing a blog alongside it with information, insights, tips and more. The style of writing is easy on the brain and the author very quickly becomes familiar to the reader by her style and trust me – that’s her shining through. There’s nothing contrived about this gal!
So here she is, the one, the only….. Lili …(and a very cute baby goat)…
A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013
Day 12 – A picture of something you love
I am my own advocate. I continue to learn about my condition(s) and keep readjusting my overall view to find the best way of working for my body long-term. But as I am part of theinformal global network of patients I am in a position to do what I love most… which is sharing that self-advocacy with my fellow patients. We pool our knowledge, ask each other questions, pass on research information and helpful links online. All to help each other. That’s what I love.
Best of all is that meeting other expert patients means that we get to piece together new understandings and links that are more apparent from our broad views as patients than they can ever be from specialist doctors’ views of their specialist area only. CRPS is a multiple disciplinary disease, it covers the ANS, CNS, auto-immune system and neurological changes. So it’s not surprising that many other conditions overlap with, or form part of, CRPS, for example: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Multiple Sclerosis, Dysautonomia, Hypermobility Syndrome, Ehlers-Danlos Sydrome, and many more. There are plenty of patients with these individual conditions, but many CRPSers have multiple conditions as part of their overall CRPS. The more I read about each of these overlap conditions and relate it to what I’ve found in the research about CRPS, the more concepts and understandings keep falling into place, or trying to (the complexity of this disease is a challenge!). I’m not medically trained, but it is phenomenal how much you can learn when you have to, and to be the best self-advocate I can be this is what I’ve had to do. If I can share what I find with others, and share what others have found and subsequently shared with me, and what specialists have found and made available through their research papers…. well, between all of us we have the best chance of pinning down key ideas, discovering links, piecing together new concepts which can then be scientifically tested.
The only drawback, of course, is that I have CRPS!
Which means that I’m very limited in what I can do each day and for how long at a time, both physically and mentally. So progress and learning is naturally in fits and starts. But slow progress is better than none, and between us all we’ve made lots of progress, xx
That’s an easy one to answer, but a tough one to precipitate.
Awareness. Knowledge. Informed decision-making from informed discussion with our medical practitioners.
The problem…
..how to increase awareness of our complex condition, (including family/friends/employers and, crucially, medical practitioners).
Time is of the essence with any new development involving CRPS and Dysautonomia. But time slips by as we work to source information and share it with our doctors.
If I could do anything as a Health Activist it would be to provide a source of gathered knowledge and research data to back it up, that’s why I created and continue to update my What is CRPS? and What is Dysautonomia? pages (and there’s even research back-up on my Health Benefits of Tai Chi page). 🙂
Some of the data which we want to share does not exist yet. The demographics we talk about a lot amongst ourselves (late diagnoses, lack of support from our doctors and so on) is not backed up with studies, so it is dismissed as anecdotal. We need scientific evidence to back it up.
So… gathered knowledge – I’ve started that here on this weblog, I’ve got more info and research references to the ‘What is..’ page as soon as I can. Plus there are several of us CRPS patients discussing a potential website. So I’m always working on this aspect.
And…. fill in the holes regarding some of the demographic data – I’ve just completed a post-grad’ piece of research which covers some aspects of this, (an online paper still to write when my brain hangs around long enough at a time to do so), and wouldn’t it be rather cool if I could do more? Any universities want a part-time (preferably mostly distance flexitime) disabled health psychology PhD student that they’re willing to fund? (Thank-you Open University for the chance to apply for a couple of available funded slots, but I don’t know that my health could take a house-move to Milton Keynes just at the moment so I’m having to look for more local options and then weigh things up, x)
As you know, I tend to set my heights crazily high and then just see how far I can get. Who knows what the future may hold? Maybe not masked crusading, but being helpful would be good!
One of my fave bloggers has just posted an amazing post!
If you, or someone you know, has a pain condition…. you just *have* to see her templates and reasoning for creating your own personal pain scale.
We all know that pain is subjective – we each experience pain but we can only rate it by what we have experienced. When asked to rate our pain at a score out of 10 the response as meaningless as the concept of “how long is a piece of string?”. Answer: the string is as long as the string is long.
Or maybe: the string is twice half it’s length! 😉
On a scale of 1-10… how much pain are we in?
– What’s the scale they’re imagining it to be?
– How close to their understanding of the scale is my own understanding of it?
– If I explain what my understanding is when I score my pain, will they note it down? Or just note down an arbitrary number that means different pain levels depending on whose reading my notes?
– Would they ever understand that a 10 on the pain scale for a CRPS patient is basically “magic me out of existence because I wish I didn’t exist”?
– If I pointed that out would they just assume I’m depressed or something?!
I’ve talked before about how I used the standard 10 point pain scale to create something that I could use for non-pain symptoms as well as part of a previous post: What I take with me to my doctors appointments. (There’s also other info’ on stuff to take to your doctor, so have a look if you think it could be helpful to you, x) It’s always been more than a niggle to me as the standard pain scale is just so arbitrary – there is no general consensus for what the pain numbers mean. They quite simply mean something different to each of us (and even then our meaning may change over time). All it does is provide a before and after reference for physio’ teams to see if they’ve ‘improved’ our pain levels before discharging us from their care. (It doesn’t take into account any changes in our understanding of what the pain scale might mean during our experience of talking to the physio’ during the course of treatment, either).
So. Yeah. The pain scale sucks.
It’s arbitrary and pointless.
Especially when the pains that are being experienced by the patient are off any scale that the medical practitioner has ever experienced themselves. They’re just not in a position to comprehend that an 8/10 for a CRPSer is ‘nearly screaming’.
So – we need to remedy this.
If you’re going to discuss a pain condition with a doctor, remember that they’ll comprehend your experience better if you can use a scale that ties in with what it’s limiting effects are on you. And not just the physical effects, either. Pain disrupts all sorts of processes, not least our ability to comprehend and understand.
Below is the link to the brilliant post that can help you to do this. It goes into more detail on how to do so, with examples of the blogger’s own CRPS pain scales that she’s created over the years to help her doctors to understand. Notice that it’s okay to create a new one when the old one just doesn’t apply any more. And the different examples also function as templates that you can choose from to create your own scale. This wonderful lady (with a nursing background – she knows what she’s talking about 😉 ) has noted at the end of her post that these are available to use, to share, to help. 😀
And if you think you might end up looking for this link on my blog sometime in the future when your are more able to spend the brain-time, then you can also just go straight to the tab on the homepage for Useful Links as I’ve added the link to the blog article there and noted it as ***Highly recommended***.
Well, let’s be realistic here…. health issues, studying and brain loss meant that I was unable to post each day for the ’30 posts in 30 days’ challenge back in April. In fact I lasted all of 6 blog posts into the challenge then my brain sputtered into uselessness on day 7! As it takes me so long for work through the 30 post suggestions I also write other relevant posts in between, which just makes it take even longer to get through the 30 posts! I’m one stubborn bunny though. I’ve still got more to write about from April, but I’m getting there! 😉
And now it’s November and WEGO have set a similar challenge, making this National Health Blog Post Month for us health bloggers. I want to do it, although I know I can’t do it in the 30 days. I had to face up to the reality back in April that my health won’t let me post every day without keeling over But that’s the point…. I’m a health blogger. I blog around my health. My conditions are a major issue and they certainly don’t affably fade into the background to let me get on with things without them. My brain stops working if I try to use it too often. Some days I will be too faint to stay upright or think straight. Some days my pain will be through the roof. Some days I will be able to write. For a short while anyway.
The point is, I don’t give up, but an important part of my everyday life is the sensible ‘pacing’ of activity that allows me to have some kind of everyday life as much as possible, even if it’s just getting washed, dressed and making my own cup of tea. If I force myself beyond what my body can cope with, I will pay a hefty price. So I do what I can when I can, and I accept that some days I cannot write and it’s best for me to rest so that my brain can recover more quickly. Such is life when living with a chronic condition, and I know it works, so I’m sticking with it, x
Writing the blog is really important to me, though. I created it because I wanted to share the information that I’d found. If someone else had been able to do that for me it would have saved me many years of slowly discovering these things and it would have helped me to develop ways of balancing my activity with my conditions much sooner. But this blog has become a part of me in the few months since it’s creation. It means more to me than I can find the words to express as I sit here in the evening with a tired brain! I always said that if this blog helps just one person then it will have been worth it, and yet the responses I have received have been more than I ever would have imagined. The heartfelt words from readers have touched my heart and let the tears run a little. The connections, the warmth, the strength, the humour and the big hearts of the readers I have met would restore anyone’s faith in the human race. There is far more to writing a health blog than meets the eye. It’s personal in more ways than just me sharing… readers share back. We are a community with shared understanding. Writing a health blog is more heart warming than you might imagine, and a lot more fun than you might expect 😉
Back in April I posted about why I write online here. It’s one of my more heartfelt moments of writing. If you fancy it, you can give it a read and let me know what you think 🙂
Sat downstairs awake once more,
Listening to the upstairs snore,
Restful in my sleeplessness,
Knowing he, at least, will wake refreshed, xx
Tomorrow is another day,
And through it I will make my way,
With outings of unusual type,
Then home to see my friend on Skype, xx
All is good despite the stealth,
Of worsening and scary health,
I live my life with joys I find,
You’re in my heart and in my mind, xx
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Those I love keep me going,
So you see, through this poem,..
My heart leads me through each day,
In the joy of love that lights my way, xx
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Good ole sofa and laptop combination!
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After writing this I wandered upstairs to bed to give the ‘sleep’ thing a go. Whilst I was lying there trying to convince my body to go into uber-relax mode I remembered that the lovely Carly had done the same thing, as she posted her own poem on here one night when she also could not sleep. (Carly’s poem is in the comments section on this link for you to read and it is beautifully positive).
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I write the occasional poem, but I don’t do it seriously, just for a bit of fun, or as an outlet. It’s a great way to get our emotions out. Sometimes we manage to say in a poem what we’d struggle to say otherwise. And the way a poem has an ending gives us a current summation point that we just don’t often get to experience in the middle of our ongoing lives. It breaks up the relentlessness into more manageable and simplified chunks. Sometimes it may even be easier to give our loved ones an insight into the personal experience of our conditions through poetry, it tends to cut to the chase and trim away all the extras.
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Why not try it yourself? Whether you are living with a condition or not, whether you’ve met me in the 3D world or online, whether you want to write a poem about deep and meaningful stuff or about the simple joys of tea and sunshine. The style, length etc can be whatever feels right, why not give it a whirl?
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And if you post your poems in the comments sections below I’ll collect them together and publish them in a post on this blog, accredited to the names you choose to give. I love the idea of a readers’ poetry post 😀
Writing is, for me, a fairly recent discovery. It began a few years ago when I got to the stage of having seen so many doctors who did not know about my condition that it was either… keep waiting for someone else to do something about this, or… do something about it myself.
Speaking to my friends about this, the general consensus was that I should write a book. They gave me many (in)credible reasons about why they believed that I was so suited to accomplish this feat, and the phrase “you are an inspiration” kept cropping up. I struggled enormously to comprehend their point of view, especially the idea of being an inspiration just by being stubborn, determined me!
The overriding problem was my lack of confidence and belief in myself. None of us should believe ourselves so capable and knowledgeable that we are no longer open to new, or corrected, knowledge. I believe it’s good to be humble. In this manner we retain our open minds and allow ourselves to keep growing and learning. Of course the part I’ve always been terrible at is the part where I should at least have still acknowledged my own skills!
No matter how hard I tried, I could not see myself the way my friends said they did. I am an expert patient, but I felt I was ‘only’ an expert patient. And I’m not the only one in existence. There are other patients out there with medical training, which gives them a much better foundation on which to build knowledge of our condition. The truth is, of course, that we each have much to offer and different foundations to build on. Individually, many of us have the knowledge, skills and motivation to write a book that could be helpful to other patients. But the biggest impact is when we share and pool our knowledge and skills, and thanks to the internet we have a fantastic communication resource at our fingertips.
So I worked on the humble-ocity (!) rating, privately wrote about my ideas, and things have been a-changing.
The internet gives us connections worldwide, and the information made available on it is accessible at any time of day or night from our own homes. If I wrote a book my fellow patients would need to hear about it, decide if it could be useful to them and then spend money to gain access. Whereas this blog is available to anyone who has access to the internet at any time and at no extra cost.
Writing a blog also seemed less scary as I certainly did not see myself as a writer. I began by drawing together the “What is CRPS?” page because gathering information into one place was my initial main goal. That page reads rather differently to most of the rest of this weblog because it is information based, and I was still finding my way when I wrote the initial bulk of it. I took to chatting a bit more in blog posts but it took a while, and some encouragement from others, before I found my ‘voice’: the way in which I speak through my writing. It turns out, all I had to do was tap right into the core of me and just be myself. Who knew?!
So I have a huge list of themes I’d like to talk about and silliness I would like to share, and they are scribbled in a notebook (a gift from Magic Dude for that very purpose) which I keep next to the bed in case of random inspiration! But when it comes to choosing what to write about in the moment I will usually go with how I feel, as I’ve found that’s the best way to put my heart into what I’m saying. I’ll look at my notes and one topic may jump out at me. At other times I might have a thought or experience that I feel like sharing, or perhaps a silly picture. One of my most recent posts was born of the incredibly poor media representation of people on disability benefits in the UK, (which you can read here). And rather than divert from my other writing in this blog, it actually reveals more about me as a person.
I never have a plan for what I’m going to write. I know essentially what I want to ‘say’ in the sense that I know how I feel about the topic, but I allow what I write to come together as I go along.
Sometimes this results in a bit of a hodgepodge of ideas, but often it just comes together in the natural flow. With some of my posts I have found that the process of writing is actually a journey of thought and emotion which naturally leads to a really honest core statement or point of view at the end of the piece. When this happens it is so instinctive that it feels like the natural way to end because I didn’t plan it. The words are raw, genuine and from the heart. And as they flow from me they feel right and lift my spirits. I used to be an artist, and in those moments where the words just flow from me I feel a similar joy in writing as I used to feel when painting or working with clay. It’s a ‘high’ of self-expression and openness, and in that moment I dare to expose a little more of who I am to the world.
So I have no plans for my posts other than a general theme or topic. I write from my heart, how well this translates depends on how well I am at the time.
As for a title, I never start with one. The writing comes first, the meaning takes form, and the structure occurs with the logical order (depending on how logical my brain is at the time!). A title gets added at the end. I say “a title” rather than “the title” because as far as I’m concerned there are always many possible titles, so I just grab one! Perhaps I need to work at this? Hehe
I still don’t feel like a writer. Hang on… I think that has just shifted… I do see myself as a writer (of sorts) (sometimes)! A mishmash view resulting from ‘writing’ compromised by the effects of the ‘Auto Gnome’. But I am always just me. And when a piece comes together I can be pleased just as I would be if a painting turned out okay. We always see the flaws in our own work, but we can still be pleased when something turns out better than we expected. And there is joy in the writing, joy in the sharing of thoughts, feelings and valuable information, and a joy-satisfaction in the pressing of the “publish” button as I realize that I have shared another part of me and that it’s not scary to do so anymore.
Writing is now a part of my life, and I intend for it to remain that way 🙂
Elle and the Auto Gnome 