Tag Archives: CRPS Awareness Month

Extra! Extra!

Dear Audy,

The NHBPM prompt that I’m using for today is “News Style Post”. I’ve gone with the style of Youtube news.

Enjoy!



Join CRPS Awareness Month on Facebook
Join NHBPM on Facebook

Also check out my previous NHBPM posts:
1. Why I Write About My Health
2. When Health Is Weird
3. You Need To See A Psychiatrist
4. Disclosure & Chronic Pain: How Much Is Too Much?
5. What About The People With Chronic Pain, Government?

Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.

Love & Newsflashes,
Caf
WEGO, CRPS Awareness Month, #NHBPM


  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • Disclosure & Chronic Pain: How Much Is Too Much?

    Dear Audy,

    Day four of NHBPM has me thinking about disclosure. It’s a two-sided topic for me, as a person living in both the real and the blogging worlds. Sharing online with a varied audience is different to sharing face-to-face with friends. Both situations call for consideration when choosing how much information I choose to disclose about my health.

    Cartoon image

    Click image for source.



    I’ve written before about Interacting Online: The Joys, The Struggles & Surviving Unharmed. Mostly, it boils down to two things: only sharing things that I am comfortable for anybody in the entire world to read and only telling my own stories. I always endeavour to not name anybody that doesn’t want to be named, I think that’s a responsibility that can benefit all bloggers.

    This blog is soapbox through which I can spread information about living with CRPS to a large amount of people. Sharing my stories helps to raise awareness, so keeping secrets about my health on this blog would be counterproductive. By blogging about the ups and downs, the changes and the weirdness, I hope to paint an accurate picture of what life is like for me and by extension, many others who are living with chronic pain.

    Writing honestly about Complex Regional Pain Syndrome has helped me to reach people all over the world who also live with the condition and relate to my posts. Often, disclosing a piece of information about my health that I thought was particularly strange or confusing will result in messages from others who have experienced the same thing.

    Being able to reach out and know that I’m not alone has helped me enormously whilst living with chronic pain.

    Choosing what to disclose in real life can actually be a lot more confronting than for a world wide audience of anybody. Writing something and inviting people to read is a little bit different to trapping somebody in a conversation about your health that they might not be interested in or comfortable with.

    It’s kind of like the difference between putting your ad on a billboard for the world to see and sending door knockers directly to people’s houses.

    Illness makes a lot of people uncomfortable. This is completely understandable, it can be a terrifying thing. CRPS is not something that many people know much about and sometimes after asking for an explanation, I can see the regret in their eyes as they try to process just how bad this thing could be.

    Sometimes, it feels like sharing information about CRPS is like getting in somebody’s face with any sort of horrible situation that they can’t necessarily do anything about. In my experience, people generally stop paying attention to somebody constantly prattling on about awful things that they can’t stop.

    “Children are starving in Africa, you know.”

    “Millions of people are dying from cancer, you know.”

    “The polar bears are going extinct and it’s all our fault and there’s nothing we can do to stop it, you know.”

    Is that the guy you’re going to be excited to see at parties?

    This is one of the reasons that raising awareness about CRPS is so important, so that it’s not a shock and horror situation every time a person living with the condition makes a new acquaintance.

    Sometimes, the discomfort at learning I have CRPS seems to be a genuine, heartfelt wish that they could do something to help, offer me some piece of hope or something bigger than “You’re coping so well, keep doing that”.

    Other times, it seems to be a genuine discomfort at illness itself. This is a perfectly understandable reaction, illness is scary and a story like mine – healthy one day, crippled the next – is one of the most terrifying scenarios of all. Nobody wants to find themselves disabled. Well actually, some people do, however I expect that nobody wants to find themselves in chronic pain. Probably not even those people that get off on pain, they might not find it so sexy if it was impossible to turn off.

    I am a walking, sometimes limping, sometimes rolling reminder that this could happen to anybody. This fact pokes at a lot of people, some of them in areas that are hidden behind the things that they consciously know and accept about themselves.

    Medical phobias, such as that of hospitals, blood and needles are fairly common. I don’t begrudge anybody for having these fears, it’s up to you to choose how to respond if you recognise them within yourself. Personally, I am always on a mission to overcome my fears because whenever I do, life looks better from the new perspective.

    How much I disclose about my health in a social situation depends on both the vibe that I sense from the other person and how I am personally feeling that day. It can be easier to answer “How are you?” with “Fine, thanks”, rather than starting to talk about my health problems. Often, I am fine in that moment, fine enough to be up and about and that’s fine enough for me. People who want to specifically know how my health it will specifically ask, it’s really not a complicated thing.

    Some people who live with CRPS and various chronic illnesses view this sort of response as fakery on my behalf. Plenty of people believe that honesty means always telling every part of every thing, but I don’t see it as such a black and white thing. Not going into details about my health because I’m trying to enjoy myself is a prerogative that I’m going to continue to own and use as I see fit. This is primarily about managing my own discomfort, although I’m also wary of disrupting the comfort of others, especially in a party setting where people didn’t turn up for a lesson.

    Nobody needs my story and my message shoved down their throats. People don’t taste things that are forced upon them in that way and I’d rather have the information that I’m trying to share digested properly.


    How much I choose to disclose about my health in a social situation also depends on just how bad it has been in recent times. From July this year, until now, things have been pretty rotten. When catching up with someone, I could go into details about my downward spiral, or I could simply say that things have been not so great lately. Sometimes just disclosing that amount of information is enough and then we can get on with important discussions about The Walking Dead and Internet memes.

    The most important thing for me when it comes to disclosure is to do what I think will make me feel the best. Sometimes that’s keeping things to myself. Sometimes that’s educating somebody I’ve just met (because sometimes they are genuinely interested).

    Being a blogger gives me options when it comes to places to express myself and I can choose to express different parts of me here and in real life. None of the parts are fake, none of them are lies, they are simply what I choose to share in that moment.

    We’re complicated things, us humans. Controlling how we disclose different parts of our health is ultimately up to each individual, this is just what works for me, at the moment.

    Tell me, Audy, what are your thoughts about disclosure and chronic illness?


    Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.

    Love & Honesty,
    Caf
    WEGO, CRPS Awareness Month, #NHBPM

    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • You Need To See A Psychiatrist

    Dear Audy,

    For today’s NHBPM post, I’m talking conversations with doctors.

    My first experience with a doctor telling me my pain was all in my head came from a surgeon.



    I was 24, still naive and not yet aware of the true nature of the beast that had entangled itself in my nerves. I’d been experiencing extended pain following my ankle twisting adventure and had a few scans taken. Initially, an ultrasound showed damage in the ankle and possibly a ruptured ligament. I was put in a Cam walker and referred to a surgeon.

    A few months later, I met him. I was sent to have an MRI on the ankle to get a clearer picture.

    A very clear picture, it turned out. A nice, normal picture of a healthy ankle with absolutely nothing going wrong.

    A deceiving picture.

    I had arrived at the appointment of the reveal, hobbling with a pair of forearm crutches. I could hardly bear any weight on the offending ankle. It didn’t take long for him to deliver his message, laced with condescension and arrogance.

    “There’s nothing wrong with your ankle. Why are you on crutches?”

    Why, indeed. Why would somebody who can’t step on their ankle without the pain of a thousand burning knives use a pair of crutches?

    “You need to see a psychiatrist.”

    I guess it’s not that surgeon’s fault that he was tricked by the tools he puts so much faith in, I can understand walking through a job with specialty blinders on. It’s easier to just do what you have to, just learn what you have to and let different specialists learn the rest. It’s easier, but not acceptable when you charge hundreds of dollars for minutes of your time.

    The second time I was told that my pain was all in my head came post CRPS diagnosis. We knew what we were dealing with, as much as anybody could in 2007. Well, I knew what I was dealing with as much as I could, it turned out that my pain specialist was far less prone to keeping up with current medical developments.

    I only wish that I’d known doctors could get away with perpetuating ignorance before I put my trust in them to help me.

    This particular doctor was all about the drugs. All about solving any developments with another pill, add another toxin, that’ll fix it. He did not advise me about the importance of remaining as active as possible. He did not advise me that I could benefit from physical therapy, from actually beginning pain management treatment whilst waiting out the health insurance gap for pre-existing conditions.

    He just advised me to wait. Wait for the ketamine. The holy grail of pain management. The ketamine was going to fix me right up, he said. Sometimes it takes a couple of infusions, he said.

    A year later, I was finally put on that drip. Needless to say, it did not fix me right up. In short, I went through withdrawal after the infusion and then everything got a whole lot worse in the pain and flaring department. Here is a link to what happened in 3 videos for those that would like more info.

    When I returned to see the pain specialist, a month or so later, I could not even walk. I had to be wheeled into his office in a wheelchair. He didn’t take well to this. Apparently, I should have been able to walk and his poor, ignorant mind couldn’t recognise that sometimes “shoulds” and reality don’t exactly match up.

    “Why are you in a wheelchair?”

    Lots of explaining. Lots of recounting how my body reacted to the infusion and how it had been behaving since then. Lots of telling of the pain spreading through my left leg. Lots of hoping that he had a plan for such instances. Lots of believing that I could not have been the only person to even have such a reaction to a ketamine infusion.

    “I don’t have anything else to offer you. CRPS doesn’t spread. I don’t know what’s wrong with you.”

    Lots of shock and confusion.

    “You need to see a psychiatrist.”

    Lots of mind boggling and despair.

    I was no blinged out old white guy with a few degrees (he had this thing for smarmy, chunky chain necklaces) but even I knew that there were many documented cases of CRPS spreading and that the notion of it being only regional was outdated.

    An old wife once told me that bad things come in threes and for the sake of this story, she was right. That’s not to say these are the only three such experiences that I’ve had with disbelieving doctors that take appointments and payments and offer only blind assumption. These are merely the most distressing instances.

    Pain Specialist Prick (PSP) was the proverbial wolf in sheep’s clothing. I was told to be wary of him, warned by my GP, warned by others in the chronic pain community. PSP was not to be messed with, he was a hard edged, straight talking, patient managing machine.

    None of this worried me at the time, I had no idea that what they were trying to tell me was that he was a bully. A basic, free range, power tripping bully. I just thought they meant that he knew what he was talking about. Which he did, in the beginning…

    Initial consultations were all promising. He was able to explain CRPS with more clarity than any doctors I had seen before him. He was able to explain what is thought to be happening when CRPS spreads. He was able to talk about the link between physical pain and emotions. He was able to comprehend brain fog. He seemed like a sense making saviour.

    Under his guidance, I spent several weeks in a rehabilitation hospital. I learned so much. It was there that I first met Feldenkrais, that gorgeous filly whom I chased back into the outside world. It was there that I started to progress positively for the first time. I felt stronger and hopeful and more in control than I had ever been.

    The point of pain management rehab is not to just bring patients in for a couple of weeks and then abandon them. The original plan that PSP gave me was a few weeks of inpatient followed by weekly outpatient appointments. I completed the time in hospital and a couple of outpatient days before the entire thing went pear shaped.

    I twisted my pelvis. This is not an uncommon occurrence, it’s just a little skeletal tweak that sets me back sometimes. When I’m able to keep active and keep my core strengthened, it happens much less. When it does happen, though, it’s highly incapacitating and I usually need to be lying down until the muscles stop spazzing out and I can start to physically work through the issue.

    When it happened on the day that I was due for an outpatient appointment, a whole lot more than my pelvis got twisted. The physiotherapists told me that I needed to book back in to see the doctor so that he could evaluate what I should do next to try to heal my body. That made sense to me, I knew that the twisted pelvis thing was only a temporary setback, but that’s the sort of thing a treating doctor should keep an eye on.

    PSP did not see it that way. Apparently, twisting one’s pelvis means that one is simply not trying hard enough. I was actually scolded. Yep, for not getting better. A high earning pain specialist decided the best approach was blame. The same pain specialist that had taught me about how unpredictable the nervous system can be could not comprehend that I could actually be dealing with an additional injury.

    Lots of shock and confusion.

    He would not allow me to continue working with the pain management team that had been helping me so much (physiotherapists, occupational therapists, counsellors) because, you know, I was just crazy. I was so crazy that he thought it OK to blatantly lie about my program ever having included outpatient sessions. It was an odd thing, that lie, because not only had other people been present when the program was initially discussed, but I had already attended outpatient sessions.

    As far as I know, it’s really difficult to attend things that don’t exist.

    “You need to see a psychiatrist.”

    I would receive no more help from him, or his team, unless I exclusively saw the psychiatrist. Because, you know, stopping all physical treatment is really good advice to give to someone dealing with CRPS and Central Sensitisation (by that time)…except that it’s not.

    Treating chronic pain as a psychiatric problem with no consideration for the physical symptoms is like trying to extinguish a fire by talking to it.


    I did see the psychiatrist, because I still felt a little bit like I had to do what I was told. Oh, so naive. The sessions didn’t help, not in the slightest. That poor psychiatrist didn’t have anything to offer me on account of mental processing wasn’t exactly my biggest problem. Talk therapy isn’t really a thing that works for me, I find it more useful to read and learn positive thinking techniques on my own. Also, writing this blog helps a lot.

    Chronic pain has been misunderstood and stigmatised for so long that many people probably don’t know what to believe. Even patients themselves often wonder if they’ve just gone crazy because their symptoms are so utterly illogical.

    It’s disgusting that doctors, especially pain specialists, are able to go around perpetuating this rubbish and informally diagnosing people with Hysteria. I suspect it’s simply because they don’t know all the answers and that just makes them plain uncomfortable. I suspect it’s because it’s easier for doctors to force patients into the box of something they’re familiar with rather than approach with honesty and curiosity.

    Whatever their reasoning, this arrogant/ignorant behaviour from doctors is not OK. Patient blaming is not OK. Professionally practising a speciality without staying on top of current medical developments is not OK. I feel like we have a broken system here, I just wish I knew how to fix it…

    Tell me your stories, Audy! Have you ever been told your pain was all in your head?


    Love & Crazy Eyes,
    Caf
    WEGO, CRPS Awareness Month, #NHBPM


    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • When Health Is Weird

    Dear Audy,

    Living with Complex Regional Pain Syndrome is like living in a perpetual state of uncertainty and oddity. I laughed reading the prompt for today’s NHBPM challenge because a much more difficult question to answer would be “What’s not weird about my health?”.

    Rellacafa, CRPS, RSD

    This person? Not weird at all.



    CRPS is incredibly hard to to understand, for both regular people and medical professionals alike. No two cases are exactly the same and the colourful array of symptoms that are associated with chronic pain syndromes can be confusing and misleading.

    By its very nature, CRPS begins as a weirdo and often remains that way. A giant, overreacting weirdo that swoops in and starts weirding up a person’s life. The pain of CRPS is often defined as out of proportion with the injury (if there even was an injury) and other symptoms can vary so much from day to day that they are impossible to predict.

    It’s weird that a body part can hurt that much to begin with, it’s weird that the alarm (pain) system itself can malfunction, it’s weird that the brain and nervous system use their amazing ability of reorganising themselves to actually perpetuate an increase the pain and associated symptoms.

    Many people who live with chronic illness struggle to feel understood. It’s hard to be so very far removed from what society understands as normal. Whilst we can relate, in ways, to others living in similar situations, each of our battles are individual. It’s often hard to explain how well we are to other people because the answer is complicated and different for different parts of our body.

    For me, the weirdest part of living with CRPS is how very sudden and drastic the changes can be, even from the tiniest changes in stimuli.

    I can be walking through my (quite small) home and then all of a sudden need to lie down on the floor because my feet have gone from a dull roar to an agonising, burning level of pain. This usually happens without warning.

    I can be cutting up a vegetable and suddenly not be able to tolerate the weight of the knife anymore, let alone accurately wield it.

    I can move from inside to outside or outside to inside and have my condition completely change within moments. The most drastic is moving from an air-conditioned room to a humid, Summer’s day. In that instance, you can actually watch my hands and feet swell up and turn red, puffy, slimy and shiny. You can’t see the pain increase, but trust me, it’s phenomenal.

    I can be enjoying a social gathering and then become so overwhelmed with the energy of other people that I shake, lose mobility and break out in crazy sweats. Yep, from other people’s energy. Just their existence, their excitement, their very presence can have a physical effect on me.

    I can have a normal emotional reaction to something and then have the physical reaction in my body catapult through the skies of intensity, which can be embarrassing. That girl who blushes at anything? That’s me. That girl whose skin drips when she gets nervous? That’s me. Only I might not actually, logically, mentally be nervous. Sometimes my body reacts like I’m in a job interview when I’m actually just talking to a friend and nothing is on the line.

    I can also have bizarre reactions to just about anything that a human body can react to, such as: chemicals, foods, weather changes… even clothing.

    On the flip side, there are some beneficial aspects to living in such a weird body despite the fact that they come dripping with confusion.

    The good emotions are heightened too. I actually have to be wary of becoming too excited, especially when my body is in a flared or weakened condition. Excitement creates as much physical tension as fear and it’s that stiffened, shaking response that can negatively impact my symptoms.

    I am more sensitive to other people, to the things that their body says that their mouth doesn’t. I’m still learning when it’s ok to ask about these little flashes of intuition. Nobody wants to think that you can see through them and straight to their secrets and sometimes verbalising a non-verbal communication can make people feel like that. Don’t worry, I can’t read minds or anything, I just feel like I’m now attuned to much more that is going on through the energy of people and things around me.

    I can’t always tolerate hugs or the nice kinds of touch, but when I can, they are stronger, fuller, more powerful feelings than they were before CRPS.

    It’s nice to note the better sides of the weirdness, however I’d give them back for a chance to live without constant pain. You know, if a genie ever asked.

    Until tomorrow, Dear Audy, I leave you with some lovely lyrics from one of my favourite lady singers…

    “Pay my lip service, keep it eloquent
    Optimistic but, never quite elegant
    Still a weirdo
    Still a weirdo
    After all these years”

    KT Tunstall


    Love & Difference,
    Caf
    WEGO, CRPS Awareness Month, #NHBPM


    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube