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

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