Support of International Community: Why Do We Need It?

In the 6 years I have been a part of the CRPS Universe I have watched it grow. When I started there was little to no support or accessible information about CRPS for the community.
I do not know who started it and I don’t think it is very important, but there was a revolution of Information.
The Great Awareness Boom.

 

I saw it the First time On Twitter. There was a small community that I became amazingly close to and it helped me get out of my rut, and also turned me on to the desperate need for support and information that patients could understand. People needed help and they needed someone to just understand.
Twitter was alive with people tweeting daily about the good, the bad, and the ugly of CRPS. Truth and Facts were shared and people started to grow a knowledge bank faster than ever.
I felt this need to have a place to go….almost a safe haven.
Even though I am based in the United States, International Awareness is something I have always strived for. This attracted me to befriend more than just US Patients but those outside the United States.
People like Mahndi from South Africa who is striving to spread awareness in his area. He works hard to bring awareness to a country that is still behind when it comes to Pain. Or Kylee from New Zealand who can’t help but make everyone she meets joyful. Whether it is her infectious smile, or her innate ability to never give up, she is an inspiration!  Then there is Jona from Iceland who can always find a positive in everything that comes her way. She works to make not only her community a better place but the world outside her home borders.
These are real people who work tirelessly every day to spread awareness about CRPS/RSD. This is how the world will learn about what we are going through and they all Use Word of mouth. These people have real stories and little bit by little bit they are spreading it through their society.
When I am approached by people outside the United States who complain that no one knows about CRPS in their town, I point to people like the ones I noted before.
If there is a lack of education or awareness in your area, it is up to us to educate the area around us.
We cannot allow it just to go by the way side. There is an International Network of amazing ideas, support and awareness out there, if you only reach out. Don’t allow doubt to stop you from using these tools in order to grow your community. The more you search and grow the more people you will find that are looking for the same thing.
CRPS knows no race, creed, religion, social status, or any form of Alignment. We shouldn’t either.
If there is someone with CRPS you are a part of an International family that is amazing!
The hearts that belong in this group beat to the same drum. We all want this pain to end.
We don’t want anyone else to deal with this pain and we all work hard to teach the world in the hopes that future patients will get diagnosed all the sooner and get on the right treatments that cause them to go into remission.
This community has thousands of Mothers, Fathers, Sisters, and Brothers. You do not have to be alone, because once you become a part of this community and you walk in with open arms, you will never leave unhappy.
Ulterior motives or negativity can be left at the door, because I promise your true motives will be sniffed out and torn apart. This community wants nothing to do with it. This isn’t about personal pride but this is about a support that uplifts and heals and Communication that lends itself to the power of hope.
Join this community; Support and Uplift and I promise you that you will never be disappointed.
Join a support group today, international, national, in person, or online.
Long Live Support!

This Blog Post is a Part of an International Group of CRPS Patient Owned Blogs and Websites.

To Read More Blogs With this Topic Click Below:

 

Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients…http://sylvieghyselscrpsdrc.wordpress.com/2013/11/22/blog-sdrc-international-des-amis-merveilleux-et-des-patients-experts-crps-international-blog-post-wonderful-friends-and-experts-patients/

 

Elle in the UK: An informal International network of CRPS patients…http://elleandtheautognome.wordpress.com/2013/11/22/an-informal-international-network-of-crps-patients/

 

Isy in the USA: International group post: Love is portable… http://livinganyway.com/wp/2013/11/22/international-group-post-love-is-portable/

Dear 12-Year-Old Me

Posted by Kylee Black on Wednesday, December 14, 2011

This is a wonderful letter written by Alisa Lipscombe who is Fellow Advocate and RSD Angel.

Dear twelve-year-old me,

Right now, life is pretty good for you. You’ve just started High School. You’re the Form Captain for your class. You got into the audition-only choir at school. You’re in concert band and orchestra playing tenor saxophone, and you were just selected to be the solo singer at the School Easter service. If I remember rightly, your favorite show is The O.C currently and every morning you head to the gym with Mum before walking up to school. Every day is hectic – you’re running around from one rehearsal to the next, texting your friends frantically as you hurry around the school. Yeah, right now, life is great.
But on April 15th that’s about to change. You’re going to fall over at the school bus stop and hurt your ankle. Yep, in front of EVERYBODY. But don’t be embarrassed. Everyone is really nice to you and they look after you as you wait for the ambulance. The next few months are going to be pretty tough. You’ll go to lots of appointments, where most doctors aren’t going to believe you when you say how much pain you are in. But the pain is real. So don’t let anybody tell you otherwise. You will be diagnosed with CRPS (Complex Regional Pain Syndrome) 8 months later, which is an incurable nerve condition that leaves you in excruciating pain 24/7.
From now on you’re going to rely on crutches and a wheelchair to get around. At first, it will be hard because everyone stares at you, but keep your chin up – people stop staring so much after awhile. School stops being as fun as it was at the beginning. Your friends are going to leave you now that you’re “weird” and sick. But next year, you’re going to meet some amazing people who will still be your friends for years to come. I know it’s cliche to say “it gets better” but it truly does. So please, don’t give up hope. Just keep studying and never stop singing. Music will save your life countless times in the coming years.
In 2007, you’re going to fall into a coma and nearly die. It’s going to be one of the scariest experiences for you and your family, but don’t worry. You’re going to wake up and you’ll be ok. From here on in, you’re going to spend a lot of time in hospital, and you’ll get to know the nurses really well. Make the most of it – befriend the other patients, and try your hardest to bring a smile to someone Else’s face every day. You can’t change where you are, but you can change how you deal with the situation. You’ll be sick of hospital food by your 6th week as an inpatient, but Eryn will come in and swap “real” food for your hospital meals. Remember to thank her. Rehab is going to suck. You’re going to hate the phrase “No pain, no gain” and want to scream every time a physio or doctor says it to you. Please don’t get too mad. They are just trying to help.
When your CRPS starts to spread, you’re going to be scared. That’s ok. You’re allowed to be scared, and crying is not a sign of weakness. It’s a sign that you’ve been strong for too long. So cry. Let it out. And remember you’re not alone. You’re going to meet some of the most amazing people because of this disease. You’ll make friends with other patients here in New Zealand, as well as those living in California, New Jersey, Canada, Israel, Australia, to name but a few. These people are going to help you survive each day. They understand what you’re going through and when it feels like nobody else “gets” this pain, they do. So never forget that.
If I had any advice for you, it’s enjoy these last few months of normality. Enjoy playing your saxophone. In 2008 when you stop being able to play it, you’re going to miss it more than words can say. Appreciate every step you take without pain, and please try to remember this feeling. I can’t. Every time you see something beautiful, stop and soak it up. In 2009 when your CRPS moves into your eyes and you start to lose your vision, you’ll miss not seeing the ocean sparkle or your cat rolling about in the sun. When you get that Merit next year in your exams, don’t cry. Hold onto the fact that you got 25 other Excellence’s. Remember that it’s OK to say you’re not OK. So ask for help when you need it.

 

When you’re diagnosed it’s going to seem like the end of your life. But it’s not. It’s just the start of a new life you didn’t imagine you’d be living. But trust in God, trust yourself and your own strength, and keep on keeping on. You’ll be ok. Trust me.
Love,

Your Future Self.

Coming to terms with RSD: Living unwell in a well world

Posted by Kylee Black on Wednesday, November 9, 2011

RSD: Living unwell in a well world

RSD spreads in up to 80 percent of cases with only 8 percent of these cases being full body or systemic. (Lucky me being in the 8% huh?? Jokes!)I’ve been working and pondering over this for a while now…Well, it was more just thought, but I thought I’d share it none the less since I say I’m all about being real and honest and since this is my space for chatting and getting my thoughts and pondering’s out I thought I would……. Hopefully it makes sense..

See this is a strange journey filled with many twists and turns and ups and downs… Of course really I’ve just described life for each one of us in a nutshell…. Sometimes though…. It appears… Different… In some form…. Somehow lines aren’t as clear cut anymore, like when you start dealing in chronic illness, which is, lets face it, is exactly what RSD is… To add to that point its INVISIBLE ILLNESS!!!!!!!!!!!! Which can be so much harder to deal…..

And here’s my delima…. How do you deal?? How do you figure it out? When sick doesn’t equal flu, function doesn’t equal wellness and a smile doesn’t mean I’m pain free?? Where are those lines that have somehow been etched away? Where does one start and the next begin?? How do I present myself? How do I fit into the worlds ideals and concepts? Or do I even bother??? How do I learn to function in a well world??

I sent this email to a friend who has suffered CRPS/RSD for quite a long time and with permission wanted to share some of her thoughts with you too …… Her responses to my struggles and pondering’s… Shes sooo darn right! Maybe it will shed light for others too……. Bring some understanding to how you deal with this stupid disease…………. (Written in colour so you know which is which)

“How do we learn to function in a well world… How do you function in an unwell world in a manner that others will understand… If I had the answer to that life would be infinitely easier. Personally I function by being purely and simply bloody minded and pig headed and by laughing at myself and the bizarre world I now live in. Why do I bother?? Because it makes me feel ‘normal’, or at least what I think normal should be…. What I vaguely remember normal to have been but its been so long that my view may be a little skewed now. I smile because I can and if I don’t I’m afraid I never will again. I laugh because I can and sometimes it’s all I can do to stop from crying. The absurdity of it all can be overwhelming and sometime you just got to laugh.I cry when no one is watching, so they don’t know how much of an act I put up. Sometimes I cry with others who actually know, because they are crying too.I cry tears of pain, anguish, grief for what I’ve lost and desperation. Tears are healing… snot nose ministry. How do I function in a well world…. Some days I don’t!””

People look at you and see a smile and a clear face (covered in acne but that’s a side issue) and think things are well not knowing you spend hours before and after to prepare yourself in a manner that shows you somewhat decent… That you put on a mask as soon as someone enters the room to show you are OK, and it happens without you even realizing it, yet they leave and you fall back into a deep breath to pick yourself up again…….

RSD has I think five different fingers to the disease… Function, pain, brain, autonomic symptoms, and sympathetic nervous symptoms…… They are all connected to each other yet at the same time also all very separate… Improvement on one level doesn’t equal improvement on another just as set back in one doesn’t necessarily equal set back in another… Of course sometimes you get thrown a tail spin and you fall flat back in every area… But I digress…

See… There is a level on which I find myself struggling… And I’m being very honest here because its in no way reflective to anyone – its just the world we live in – its me coming to terms with RSD in the world I’m trying to re adapt to… In a normal world, in normal settings as people understand things to be function = improvement, and in fact it is! One I’m truly thankful for but function would also appear to mean I’m getting better and this is where the hiccup happens…… This is where all of a sudden the lines in ease of understanding disappear in RSD…. Its so far from the truth.. And yet it spins even my head out to understand this…….. How can I be regaining function on some level when I’m not doing well in others?? When I am struggling with my body?? When its soo flipping complicated? And here’s what it boiled down to…. Here’s where I’m stuck……..

How do I respond to people when they tell me I’m looking soo well or getting soo much better all the time – that I’m on the up and narrow now when I feel like I do?? Smile politely and say thank-you? Nod my head and agree? Cant you see how Ill I feel??”, “Cant you see my legs burning like flames???”, “Don’t you know how hard I work to put a smile on and appear like I’m normal??” , “Don’t you see the price I pay for this chance encounter?” Why do I look sooo well when I feel so crap inside or I know what the price will be that once I stop I will crash hard…………

Of course this isn’t about sympathy, and it isn’t about vying for attention either…. Its simply getting my head round adapting to an invisible illness that’s barely heard of let alone understood….. I’m crazy lucky to have supportive friends and family who have been willing to learn, read and try to understand… But its still an insanely ridiculous ride! Being bed ridden or caregiver dependant is one thing…. I think easier for people to “get it”, but the more function I fight back for the harder I realize in other areas it will be……. What do you do when function is only a co part of RSD??

Do you know most RSD sufferers are able to fight for most of their function back yet they are all still fighting no less of a journey? Your body learns to adapt and it also come to terms with the high level of pain… You learn to push on stubbornly in spite of….. You learn to put on a mask as you walk (hobble or roll) out the door that hides the suffering and how you really feel… You surprise yourself at how well you can present yourself given enough time, preparation and make up… You learn to adapt to the feeling of walking or standing on broken bones, you learn to hide the pain, you know when to leave and hide away and yet you crave and cry for more of a chance to live life as easily as others…….. To go out without a second thought and not have to worry about concern for pay back….. You know you will have good days, better days and bad days, your better months and worse… There will be days you can not get out of bed of lift your head and days you function with the ability to get out and about… I liked what my friend said…

“Function is what you make it! Today it is movement, tomorrow it may be the ability to roll over in bed, next week it might be the pool, the week later, the ability to smile and lift a finger… And I never know day to day or hour to hour what it will be… that’s the guessing game that is RSD.

Pain.

It never leaves me.

Sorry to burst your bubble.

I know people in remission, it has never been me. … The cause of depression, anger and envy.
I’ve had good months but its always there, nagging away, grinding at your will, but its always there in some form or another and it is EXHAUSTING.

Unless you’ve been there you will never understand so don’t expect others to. They might think they do, but they can’t even begin to grasp how all encompassing it is.They see pain as a scrape or a muscle strain. They can’t understand being on fire, touch equalling pain, movement, no matter how minor being agony. They can’t. Save yourself the torment and accept that they can’t understand.

Brain…

Well mine checked out years ago, its one of the more frustrating things to deal with. Why can’t I do today that which I found easy yesterday. Why can’t I even remember yesterday?

Autonomic response…
I can’t fathom, I want to know more, but when the best in the world can’t explain it how am I to understand how surgery to my left ankle now affects my temperature regulation in my ENTIRE body? I’ve studied neurobiology and I still don’t get it. I just don’t. I understand the theory but not how that converts to what I experience. There is so much I want to understand, so much I want to know, but short of a massive research grant and some PhD students to do the work for me, I will have to rely on the work of others…

And when they (all the different fingers of RSD) all crash at once it feels like you are dying, here and now. (Seriously true!). Some days its ok to admit I DON’T GET THIS, and roll over, pull the covers up over your head and admit defeat. Metaphorically just walk away. You don’t have to understand it to know its really happening to you.

I remember in the first couple of years thinking that if I just pinched myself hard enough I would wake up to find its all just a bad nightmare. Yes, it’s a nightmare all right, but I’m not going to wake up anytime soon. I might as well accept that this is what it is and I CAN FIGHT, I will never be the same, but God willing, I will come out the other side a bigger and better model and, by God, I’ll have one hell of a testimony.”

Does it matter what people think?? Probably not…. But comments hurt and sting all the same don’t they?…. Maybe I’m to vulnerable? Maybe its still to raw? Maybe I’ll learn to brush things off without a second thought…Those both said in love and in spite………. I don’t want to be a sick person… I don’t want to have this as my deal…. Yet at the same time there’s a level of acceptance I have to come to before I can really move on but with still a sense of hope and deep belief for healing……………………

Sooo lucky to have others that actually get it and understand! People that are further down this track then me… It sure is a mind full…….. I am seeing benefits of Ketamine and can nearly take a hobble step… One step at a time while I continue to get my head around everything and do what I can to keep making steps forward —- And that’s without any help or support through PT, OT, rehab…….. I think that’s pretty cool!

Love Kylee xx

The Battle: The True Face of RSD/CRPS

In comparison to the many people I have met through our organization, RSD/CRPS Doesn’t Own Me, I feel very much like a baby when it comes to how long I have had RSD/CPRS. It is just barely my 2nd year anniversary and I sometimes wake and wonder how I made it thus far.

We make it little by little, day by day, moment by moment. We sometimes can’t grasp how we get through but we should know that it is worth it.

So many of us who have RSD/CRPS know how hard the struggle is. So as a testament to each and every one of you I wanted to compile this article.

 Why do we fight?

“Why do we fight?” you may ask, and to that I answer, because although we strive to live our lives amidst the down pour of our pain, we are still amazing and beautiful human beings. We go through every day and we may have a bad or good pain day but we are still here. That is a real sign of courage and strength. We are put here to help each other through, and this is what I hope to accomplish through this article.

Leiana Jones from the UK writes:

“I have seen so many posts on my Facebook updates but really haven’t had a chance to get in touch until now, as stories go I think I am pretty rare in the world of RSD. I had five years of battling RSD, getting it diagnosed and finding a treatment that worked.

I tried everything from TENS to drug therapy, pain management courses, Gwenethadine Blocks (which worked for two days longer each time I had one), Bylateral Lumbar Sympathectomy ( winning treatment) just to name a few.

My story is somewhat remarkable as regardless of all of the research my family and I had done on treatment’s the reason I am still alive now came from my dinner lady at primary school. We all live in a small village and most people were aware of my deterioration. This wonderful lady mentioned me to her next door neighbors daughter who was visiting from Scotland; and who just happened to work for a pioneering pain management unit for children and within days I was an inpatient for three weeks for trial treatments. It wasn’t without its trials and tribulations but I was walking for the first time in four years and pain free!!!!

The diagnosis was the toughest most traumatizing part of the whole process, being accused of being a school refuser, attention seeker, abused by my parents, CRAZY! Dreadful!! Living on a small island is also not great as there are very limited resources. I have over the last three years become less involved with RSD awareness as I have focused on my education and career but am very interested in becoming more involved in the work you guys seem to be doing.”

 Negativity

As RSD Angels we are consistently bombarded by nay-sayers or negativity from a lot of different sources. We are told that we should give up just because Doctors don’t have the wherewithal to help our pain be diminished.

I was always told that too much education on one subject can end up hurting you in the long run. I am here to say that this isn’t the case with RSD/CRPS. Education and Awareness is the key to knowing what to do and in some cases not to do when diagnosed with RSD/CRPS. It is very hard to wrap your head fully around something as life changing as this disease is but the more we try sometimes the easier it is to come to grips with it. I cannot tell you how many times my pain management doctor or his GP have told me something incorrect about RSD/CRPS. They don’t live with this pain like we do, sometimes it will be the only thing we can focus on, and we are usually the first to notice if something is wrong.

This doesn’t give us license to be upset and go off the handle whenever someone gets it wrong. They are not us, they can only go on the information they have at the moment.

Furthermore never believe that your treatment options’ are few, because there are more treatments becoming available everyday. Just to show you an example of the amount of treatment there are our RCDOM Staff Member Kylee Black has been so kind as to share what she has tried and what has or has not worked for her.

“High dose ketamine – 800mg to 1200mg over 4 hour stints in theater in hospital – helped a lot

Low dose ketamine – 32mg an hour 24/7 for 14 days in hospital… No side effects, limited benefits.

Lyrica – horrid side effects…

TENS – would bed bound me for days after each use.

Injections – my pain turned to brain maintained to quickly for blocks to be able to work

Narcotics – am on them now – they help to a degree – allow me more function and less pain.

Neuropathy meds – help heaps

Warmth – heating pads – electric blankets etc… Help heaps – saving grace!

Ketamine coma – haven’t tried – know patients who have been though – I think too many risks…

PT – helps but in some ways regressed me

Mirror therapy – helped heaps

Cognitive therapy – helped a lot

Pain management – helped

Relaxation techniques – I already had them – helped to revise…

Brain retraining and awareness — helped quite some!”

These are just a fraction of the treatments that are sometimes used for RSD/CRPS. I know it is very hard to fight insurance or workman’s comp. but if we don’t try to get some form of treatment we may never know if it could have helped. There will always be that nagging question and that “What if?” floating around in our heads.

 The Challenge

I challenge all RSD Angels to not only stay strong but to try to educate and spread awareness as much as possible. If we stay quiet and do not share our struggles and stories then no one will begin to help us find a cure. We aren’t saying you should go out and make everyone in the world pity you or feel sorry for you lot in life. Instead allow them to have a greater understanding that they shouldn’t take life and their health for granted. One day it could be them that are the disabled ones and if they learn now it may help them to go down the correct path of treatment and ultimately remission.

We also have to remember that we are not the only ones effected by RSD/CRPS it is sometimes as hard for our families and friends to watch us struggle as it actually is having it yourself. People sometimes think that isn’t true but of mothers, fathers, siblings, children, spouses, and/or extended family do care for you and they wish as much as we do that it would go away. They may not understand fully but that only creates a form of frustration, that they cannot take away or ease our pain.

The following is a story from an RSD Angel’s Boyfriend, Joseph Whightsel, about how his girlfriend’s RSD effects their relationship.

“I have been dating a girl with RSD for several months now and I just wanted to share my story with the rest of the RSD angels and supporters here. When I first meet her, I thought she was like any other girl, except for the fact the she was the most beautiful and stunning girl I have ever seen. I meet her over the internet, where we found out we had bumped into each other before. It was not until our date she told me she had a incurable disease called RSD/CRPS.
At first I thought “Hey, no big deal it’s cool! I can handle it!” It’s wasn’t until I heard about the excruciating pain she lives through daily that I gave it another thought. She explained it to me as someone draining the blood from her veins filling them with gasoline and igniting it then wrapping barbed wire around her leg. She told me that it’s likely that in several years she won’t be able to walk and have to get around in a wheelchair.
It’s difficult to hear about that kind of thing and say, “I’m still committed to you babe!” It’s hard, the simple things you take for granted in a relationship become very difficult to perform. Things such as being able to put your hand in her lap, giving her a foot rub, rubbing her leg all became very painful for her. She finds it hard to walk long distances and travel in a car for more than an hour takes much of her energy. I found that she is a strong a capable women with lots of strength.
I pray to God for her every day that the pain is mild and that she has a good day. I help her when I can or when she lets me, she can be stubborn and refuse help at times and pays for that later but I love her with a passion. I will be there for her whenever she needs me and I’ll offer her as much help as she needs. For anyone out there, RSD does not have to be the end of everything. You can find someone out there who understands what it takes to love you. You can live as normal as a life as you can when someone who loves you stands beside you. I love my RSD angel and I will never let her RSD get her down!”

This really shows the kind of fear that accompanies taking care or loving someone who has any disease let alone RSD/CRPS. We never think it would happen to someone we know but it takes strength in character to stand by and be supportive. Do not give up when the going gets tough. You are priceless and also not just anyone can say they walk through fire daily and are still alive to tell the tale. Be proud of yourself!

I pray that we continue fighting and spreading awareness together. Together we can go so much farther than going it alone. You are never alone amongst friends.

Christa Azbell

Founder of RSD/CRPS Doesn’t Own Me

www.rcdom.org

Coming to terms with RSD: Living unwell in a well world

Posted by Kylee Black on Saturday, November 28, 2009
 

RSD: Living unwell in a well world

RSD spreads in up to 80 percent of cases with only 8 percent of these cases being full body or systemic. (Lucky me being in the 8% huh?? Jokes!)

I’ve been working and pondering over this for a while now…Well, it was more just thought, but I thought I’d share it none the less since I say I’m all about being real and honest and since this is my space for chatting and getting my thoughts and ponderings out I thought I would……. Hopefully it makes sense..

See this is a strange journey filled with many twists and turns and ups and downs… Of course really I’ve just described life for each one of us in a nutshell…. Sometimes though…. It appears… Different… In some form…. Somehow lines aren’t as clear-cut anymore, like when you start dealing in chronic illness, which is, lets face it, is exactly what RSD is… To add to that point its INVISIBLE ILLNESS!!!!!!!!!!!! Which can be so much harder to deal…..

And here’s my dilemma…. How do you deal?? How do you figure it out? When sick doesn’t equal flu, function doesn’t equal wellness and a smile doesn’t mean I’m pain-free?? Where are those lines that have somehow been etched away? Where does one start and the next begin?? How do I present myself? How do I fit into the worlds ideals and concepts? Or do I even bother??? How do I learn to function in a well world??

I sent this email to a friend who has suffered CRPS/RSD for quite a long time and with permission wanted to share some of her thoughts with you too …… Her responses to my struggles and ponderings… Shes so darn right! Maybe it will shed light for others too……. Bring some understanding to how you deal with this stupid disease…………. (Written in colour so you know which is which)

“How do we learn to function in a well world… How do you function in an unwell world in a manner that others will understand… If I had the answer to that life would be infinitely easier. Personally I function by being purely and simply bloody minded and pig-headed and by laughing at myself and the bizarre world I now live in. Why do I bother?? Because it makes me feel ‘normal’, or at least what I think normal should be…. What I vaguely remember normal to have been but its been so long that my view may be a little skewed now. I smile because I can and if I don’t I’m afraid I never will again. I laugh because I can and sometimes it’s all I can do to stop from crying. The absurdity of it all can be overwhelming and sometime you just got to laugh.I cry when no one is watching, so they don’t know how much of an act I put up. Sometimes I cry with others who actually know, because they are crying too.I cry tears of pain, anguish, grief for what I’ve lost and desperation. Tears are healing… snot nose ministry. How do I function in a well world…. Some days I don’t!””

People look at you and see a smile and a clear face (covered in acne but that’s a side issue) and think things are well not knowing you spend hours before and after to prepare yourself in a manner that shows you somewhat decent… That you put on a mask as soon as someone enters the room to show you are OK, and it happens without you even realizing it, yet they leave and you fall back into a deep breath to pick yourself up again…….

RSD has I think five different fingers to the disease… Function, pain, brain, autonomic symptoms, and sympathetic nervous symptoms…… They are all connected to each other yet at the same time also all very separate… Improvement on one level doesn’t equal improvement on another just as set back in one doesn’t necessarily equal set back in another… Of course sometimes you get thrown a tail spin and you fall flat back in every area… But I digress…

See… There is a level on which I find myself struggling… And I’m being very honest here because it’s in no way reflective to anyone – it’s just the world we live in – its me coming to terms with RSD in the world I’m trying to re adapt to… In a normal world, in normal settings as people understand things to be function = improvement, and in fact it is! One I’m truly thankful for but function would also appear to mean I’m getting better and this is where the hiccup happens…… This is where all of a sudden the lines in ease of understanding disappear in RSD…. It’s so far from the truth.. And yet it spins even my head out to understand this…….. How can I be regaining function on some level when I’m not doing well in others?? When I am struggling with my body?? When its so flipping complicated? And here’s what it boiled down to…. Here’s where I’m stuck……..

How do I respond to people when they tell me I’m looking so well or getting so much better all the time – that I’m on the up and narrow now when I feel like I do?? Smile politely and say thank-you? Nod my head and agree? Cant you see how Ill I feel??”, “Cant you see my legs burning like flames???”, “Don’t you know how hard I work to put a smile on and appear like I’m normal??” , “Don’t you see the price I pay for this chance encounter?” Why do I look so well when I feel so crap inside or I know what the price will be that once I stop I will crash hard…………

Of course this isn’t about sympathy, and it isn’t about vying for attention either…. Its simply getting my head round adapting to an invisible illness that’s barely heard of let alone understood….. I’m crazy lucky to have supportive friends and family who have been willing to learn, read and try to understand… But it’s still an insanely ridiculous ride! Being bed ridden or caregiver dependent is one thing…. I think easier for people to “get it”, but the more function I fight back for the harder I realize in other areas it will be……. What do you do when function is only a co part of RSD??

Do you know most RSD sufferers are able to fight for most of their function back yet they are all still fighting no less of a journey? Your body learns to adapt and it also come to terms with the high level of pain… You learn to push on stubbornly in spite of….. You learn to put on a mask as you walk (hobble or roll) out the door that hides the suffering and how you really feel… You surprise yourself at how well you can present yourself given enough time, preparation and make up… You learn to adapt to the feeling of walking or standing on broken bones, you learn to hide the pain, you know when to leave and hide away and yet you crave and cry for more of a chance to live life as easily as others…….. To go out without a second thought and not have to worry about concern for pay back….. You know you will have good days, better days and bad days, your better months and worse… There will be days you can not get out of bed of lift your head and days you function with the ability to get out and about… I liked what my friend said…

“Function is what you make it! Today it is movement, tomorrow it may be the ability to roll over in bed, next week it might be the pool, the week later, the ability to smile and lift a finger… And I never know day-to-day or hour to hour what it will be… that’s the guessing game that is RSD.

Pain.

It never leaves me.

Sorry to burst your bubble.

I know people in remission, it has never been me. … The cause of depression, anger and envy.
I’ve had good months but it’s always there, nagging away, grinding at your will, but it’s always there in some form or another and it is EXHAUSTING.

Unless you’ve been there you will never understand so don’t expect others to. They might think they do, but they can’t even begin to grasp how all-encompassing it is.They see pain as a scrape or a muscle strain. They can’t understand being on fire, touch equaling pain, movement, no matter how minor being agony. They can’t. Save yourself the torment and accept that they can’t understand.

Brain…

Well mine checked out years ago, its one of the more frustrating things to deal with. Why can’t I do today that which I found easy yesterday. Why can’t I even remember yesterday?

Autonomic response…
I can’t fathom, I want to know more, but when the best in the world can’t explain it how am I to understand how surgery to my left ankle now affects my temperature regulation in my ENTIRE body? I’ve studied neurobiology and I still don’t get it. I just don’t. I understand the theory but not how that converts to what I experience. There is so much I want to understand, so much I want to know, but short of a massive research grant and some PhD students to do the work for me, I will have to rely on the work of others…

And when they (all the different fingers of RSD) all crash at once it feels like you are dying, here and now. (Seriously true!). Some days its ok to admit I DON’T GET THIS, and roll over, pull the covers up over your head and admit defeat. Metaphorically just walk away. You don’t have to understand it to know it’s really happening to you.

I remember in the first couple of years thinking that if I just pinched myself hard enough I would wake up to find its all just a bad nightmare. Yes, it’s a nightmare all right, but I’m not going to wake up anytime soon. I might as well accept that this is what it is and I CAN FIGHT, I will never be the same, but God willing, I will come out the other side a bigger and better model and, by God, I’ll have one hell of a testimony.”

Does it matter what people think?? Probably not…. But comments hurt and sting all the same don’t they?…. Maybe I’m to vulnerable? Maybe its still to raw? Maybe I’ll learn to brush things off without a second thought…Those both said in love and in spite………. I don’t want to be a sick person… I don’t want to have this as my deal…. Yet at the same time there’s a level of acceptance I have to come to before I can really move on but with still a sense of hope and deep belief for healing……………….

…..

So lucky to have others that actually get it and understand! People that are further down this track than me… It sure is a mind full…….. I am seeing benefits of Ketamine and can nearly take a hobble step… One step at a time while I continue to get my head around everything and do what I can to keep making steps forward —- And that’s without any help or support through PT, OT, rehab…….. I think that’s pretty cool!

Love Kylee xx

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