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Life Reimagined: Four Years after RSD/ CRPS, by Rikki Lynn

Four Years After RSD/CRPS

Guest Post by Rikki Lynn

So, Life has become this thing that I now bargain with on a constant basis. Most people do that, I believe. We all say, “Well, if I go to the gym today I won’t have to feel guilty about the ice cream I had after dinner last night”, or “If I take the kids to pizza tonight, I can feel okay leaving them with the sitter tomorrow while I’m at the baby shower for the new co-worker I’m trying to befriend.” So it goes, one long life of never ending compromises. Only mine looks a little different.  


If I grocery shop today, then tomorrow I can rest and the following day I can go to lunch with a friend, stop and get those few things from the store, and maybe get a case of water from Costco if my feet don’t hurt. Then, if by the end of the week, I’m feeling okay, I can try to accomplish the other errands I might still need to get done.


 A full day out running a few errands can quickly end any future plans for the week if I don’t take a rest day between, or make time for healing foot soaks, and be very strict on making sure I’m taking my supplements.

Far gone are the long days of running around accomplishing an entire list of things and still preparing a hot meal and going strong until bed time and still getting up to do it all again the next day, and the next, and the next. That is no longer my life. I miss that life. So many friends think, “Oh, what I wouldn’t give to not have to work” …… I promise if you are one of my friends who thinks that, you would not give what I have given to not work. The cost is way too high a price to pay. I’d gladly work in exchange for a life I can enjoy and one I can dictate my daily routine and plans for. 


Alas, things are what they are, and life is what it is, and so the story goes…make the best of it. We hear that often, don’t we?  But what does that look like, in practice, in real life, played out? 


What can that look like in your life?


Suffering doesn’t always have to be ugly. You can make it sparkly, and it can have its days where it even feels pretty. 
You don’t believe me, I know. I didn’t believe me either when I told myself I didn’t have to suffer the way I was. I have a knack for proving people wrong though, including myself. I’m stubborn like that.

It’s definitely a forced different way to look at life now. Since nothing is the same, nothing’s the same…. so I’m trying to adapt so that not everything is stolen away. I’m trying to find ways to be flexible in the life I’m left with and rearranging things to fit my new life. 


I’m adjusting, and instead of saying ‘no’ to everything …I’m trying my darndest to find new ways to say “maybe” and get creative because “maybe”, just maybe, I can say yes to a few of those things. I’m so dang tired of saying no to everything I once said yes to.  Before you think I’m suggesting everyone or anyone can just ‘do’ all the things we once could, or that any given day we can accomplish these triumphs, I’m not… but once in a while finding creative solutions to things that are bothersome can become things that are fun!!  


So here are a few thoughts to share, just to give you an idea of what I’ve been talking to myself about recently.


 I do some things already on a regular basis like curling my hair or putting makeup on about once a week before my Mister comes home from work so he is greeted with a ‘done up’ woman who looks nice for him. I enjoy that feeling. I am so keenly aware that many of us can not always do this type of thing by ourselves however, and would need help to do our own hair or makeup because of the location of our injury/damage. Well, let’s think creatively…


How about a girl’s night with girlfriends- one of them could host a ‘make up party’ giving each other facials or doing nails and toes  (or whatever you prefer). Someone else can bring treats, ask one to do the arranging and invites, then all you have to do is be present. There are so many types of get-togethers for men and women alike. Party games or activities can be planned, it can be in a house as low-key or action packed as you would want. Everyone can be included to whatever degree fits for them. Often a great source of ideas is Pinterest or Google search baby shower, bridal shower, and party games for adults.  


I truly believe this is an important thing that we should try to do on a regular basis. And I’ve always had that one friend who absolutely loves to entertain, don’t you? It really goes way beyond that.

It’s good to let friends feel like there is something they can do to help, because they often feel like you suffer, but they can’t fix it, or offer any solutions. Involving them in something positive they can do for you actually allows them how to add a meaningful gesture, and that means more to everyone involved. You see, so many of us with chronic pain get stuck being left out of outside activities and eventually left out altogether because people don’t think we can or want to do things and often they are right. We’d say ‘no’ anyhow even if they asked. So, they quit asking us. Our friends feel like they can’t fix our pain, so they feel a sense of ‘helplessness’ that leaves them feeling bad when they are around us. That isn’t our fault obviously, but really it isn’t their fault either. It is human nature to want to solve problems or avoid them. Let’s face it, chronic pain is a problem. At least it feels like one to most people who have to live with it in their life in any capacity at all, even at a distance. People tend to avoid what they don’t know how to fix. We tend to feel neglected, and then rejected, and then hurt, and then angry.  The whole thing is more of a misunderstanding than it is an actual problem that can not be solved.  We can give our friends tools to be involved and active in our new lives, but WE have to be the ones to say what we need from them, exactly how it should look, and we should not expect it all to be ‘a pain in the butt’ as it were. WE, as chronic pain patients, need to (yes I know I hate it too) do one more thing to add to our never ending list of ways we have to change our lives, but we must make a mental note to give our friends and family the opportunity to create fun and memorable moments in our lives. We can do that. Even if we can not get out of bed, they can come and sing for us, read poetry, paint for us, show us pictures of things outside they saw during the week, tell us about their week…but not the boring stuff…ask about random things! Have them do a mental note to seek out certain things for you while they are out- like how many times did they see something with an elephant on it? (Or whatever your favorite animal might be.) Maybe ask them to try to notice if they see it and keep track of where they were and how many times and to snap pics if they have the chance to….  it becomes a way for them to connect to you from where they are and for them to remember that they have the chance to bring you into their day and to bring their day to you at the chance when you get together they can share those moments and hopefully share what they thought about at the moment.  Maybe you set out certain goals for certain friends that you know will help them do something fun for themselves that you know they might not do otherwise but you push them to do because you can’t do it…so you become their reason and you live vicariously through them…not as fun I know, but how great to be an inspiration to another human.  Maybe you just sit on a blanket in your back yard with your pet and you talk about the things you wish you had done with your life while you had your health, and you figure out if there is an alternative way to do something similar to any of those things from a different vantage point-or in a different capacity than you once had imagined. 


Life is all about the art of being flexible and adapting to whatever comes our way. We surely got dealt a hand that doesn’t look the way we wanted it to, some of us can’t even use our hands anymore at all….mine are much more painful than they once were but still useful to a degree at least for now.  My attitude, my will, my mind, my nerve, my grit, my relentless pursuit of life, those are all things that this pain can not take from me without my consent. I will not give it. I will continue to find ways to bring life to my door, to barter with my body for one more day and find a way to love this life despite the pain. For me, life is about living it with my arms wide open. Some days I can hardly lift my arms and every great once in a while I can dance …. I choose to celebrate the days I can dance and to plan for the next one that comes along, hoping I can wear heels 😉  I choose to be that kinda’ girl.  We can do this- together, we can find ways to cope, to manage, to lift each other up, to share a smile across the miles, to learn from one another, to gain new tools that help us manage better, to be there for each other in the hardest, darkest moments.

WE can do this because WE ARE WARRIORS and we will not go down without a fight!


Part of that fight might be a pajama party with a pillow fight and ‘The Notebook’ on the tv,  and it may even be in the middle of the day if it needs to be- only one other friend there if that’s what it takes. We have to find those moments. 


Make life come to you if you can’t go to it. 


Don’t feel like you have to lose your life because you have to say no to things. Find things to say YES to…and create things you can get your friends to say YES to as well ❤

 

               *********

This is the 3rd year Rikki has shared her experience with us. Read her thoughts in her first year after diagnosis here in “Broken things can be Fixed”. As her life changed due to CRPS/RSD, you can read how she changed with it in her second submission here in “Flow like Water”. Rikki has been so generous to share her heart with us, allowing us insight into her ever-evolving life as she learns and grows through CRPS/RSD. Each post is insightful on its own, but I encourage you to take the time to read all three as a trilogy. Thank you so much for sharing your beautiful soul with us, Rikki! It is always my privilege to feature your work!

Flow Like Water: Reflections on CRPS / RSD year 2- Guestpost by Rikki Smith

I Never thought You Could get a Disease From a Car wreck RSD CRPS

I never thought a car wreck that did damage to my elbow

would stop me from walking an entire year later.  I never thought you could get a disease from a car wreck.

I never thought I would have to depend on anyone else
to get me through tough times in my life.

I never thought I would face an uncertain future
without the ability to answer the tough questions.

I am by nature a very opinionated, strong minded, determined and focused individual. Having my life turned upside down by an unforeseen event is not in anyone’s plans of course, but, the thought of it was always something I thought I knew exactly how I’d handle as a ‘strong and independent woman’. Little did I know that my ultimate undoing would also be the one thing that allowed me to become more whole as a person.

Looking back on last year’s thoughts on how this disease impacted my life over the first year of learning to deal with it, I was already at a place of seeing the blessings that came with the pain and the horror. I make it a priority to find good in all things or at least as many as possible. I don’t believe things are one way or another in life. I believe that things are the way we interpret them to be. Our perception and reactions to life determine what we take from each instance and whether or not we count it a blessing or a curse or in this case admit it is equal parts of each.

There are still times where I try to convince myself that this is all a bad mistake and that I’m really ok (when I feel good it’s easier to lie to myself) and the pain was just a figment of my imagination trumped up by my brain somehow. I still have those moments or days of denial where I really do want to refuse to believe that I will have to deal with this for the rest of my life. There are also days where I think I have it under control and manageable and that I can handle it. I fool myself into thinking that I am the one in control, not the disease.

I am learning that there is more to it than drawing hard lines, coming up with definitive answers or even being able to list symptoms. Everything is so fluid and ever changing with CRPS. Life equilibrium. Balance has never been so important and never meant so much to me as it does now. I’m learning to live in a state of seeking my own level the same way that water does. When my pain levels are up, my activity levels go down and vice versa. When I am frustrated with my limitations, I find ways to realize the gains that they have brought me in my emotional life. My physical life has forced my emotional life to do some very large sacrificing….and what I thought was me becoming weaker is turning out to be me learning to become stronger.

You see….. when life begins to strip you down to your core and bend and stretch you to your breaking point, you have to adjust and adapt and learn new methods. There is more to it than that though. You can get caught in the label, in the diagnosis, in the symptoms, in the daily rigor of the battle and forget that you have a life to live beyond the disease. You can forget to choose to take in the beauty around you, to find new strengths, new outlets, new hobbies, new friends, new resources, new paths to use your talents on.  It is so easy to get stuck in the mud of the issues that come with CRPS/RSD….but we who have this disease have to learn to rise above and be water and flow and seek our own level.  We have to learn to live differently. Life may never look the same, but that doesn’t mean it cannot be beautiful, or full of adventures. It just means we have to change our definitions and more than that we have to push ourselves to make new expectations, focus our perceptions and define our interpretations in a way that helps us grow and find positive experiences in the struggles that we face.  If we don’t adapt we become stuck in that mud and the weight makes us feel like there is too much work involved in moving forward we become depressed and despondent because our expectations are still tied to our old life and our old abilities.  I’m learning now to flow, to adapt, to change my focus away from what life was, what I used to think, expect, want, etc so that I can still have dreams, still have goals, still accomplish things. Now I do so as part of a team, with the help of friends, family and loved ones. The disease brings its own challenges, but if we accept our lives are not determined by external circumstances, but rather by our mental approach, we can and we will triumph despite the challenges, no matter what they are. Rise to the top, find balance, seek your own level and don’t stay stuck in the mud. Make the choice to look for a new perspective.

I never look forward to the pains I know the next year might bring, but I do actually anticipate with high hopes the new horizons and the new vantage points that come on the other side of the valleys. I plan to enjoy my journey no matter what, for as long as possible!!!

~Rikki Smith

I am so honored to have Rikki as a guest writer for us 2 years running! I have revisited her post from last year “Broken Things can be Fixed” several times throughout this past year and it still chokes me up. She has so much wisdom, insight and vigor, it is easy to forget she is in her second year of Complex Regional Pain Syndrome. Thank you to Rikki for lending us your voice today and allowing us to share your end-of-year reflections on your ever-inspiring journey. Rikki has many hobbies including traveling with her family, uplifting others around her, and she has a passion for Celtic Mythology. Check out her fascinating Facebook page: Celtic Lore and Mythology.

To see more RSD/CRPS articles, artwork, and poetry, visit the Categories menu for “RSD/CRPS” or click here. 

Broken Things Can Be Fixed

Strong Enough Poster | Broken Things can be Rebuilt article #spoonie #RSD #CRPS #Fibro #MS #CFS #Chiari #Migraine #invisibleillness #chronicpain

Being Broken, I roll over and apologize yet again. I am sorry I am broken. I mean it when I say it.

Agonizing pain makes me the unbearable one. I moan, I cry, I writhe in pain. That isn’t what really hurts. The real pain comes when it wakes you up. When this beast reaches past me and begins its assault on you. It strikes again in the middle of the day when a young boy wants to play and have fun, but he can’t ask because he loves me and he sees that I am in agony. So he suffers quietly trying not to be hurt that he can’t ask. Always the thoughtful loving child he would not want me to suffer. I don’t want him to suffer and feel alone even in my presence. This disease spreads the pain far beyond my arm, my leg, etc. It reaches out and it latches on to the minds and hearts of those I love. It shatters dreams, it breaks hearts, it damages everything it touches.

Broken things can be fixed. Sometimes. They don’t always look the same when they are put back together. Re-purposing, taking something of one use and redefining its use. That is now the story of my life. I won’t accept being useless. I am not. I have purpose, I have life and use left in me. It won’t look the same. The clay has to be reshaped. The design is no longer of my making. I am now at the mercy. Mercy. Grace given when it isn’t earned. Help, I need help. I have never needed help in my life. Now, I need help. I need to find a way through the darkness.

Independent. I have always been a wandering gypsy soul. Stubborn. It’s in my genes. The hardest thing to navigate has been the stripping down of all of that. I can’t just go, can’t just do, can’t just be “me.” Life has changed. I thought it was for the worse. But, along with being all that I am, I am one thing indefinitely. I am the eternal Panglossian!  I look for hope and beauty in the worst of situations. And I have found some real treasures. Most of all, the support and love of those closest to me. I am actually learning, learning that I can let others love me. Who knew. I thought I was supposed to do all the work, be on top of handling everything, making sure it all runs smooth and without any hassle to those I love. I have never been able to delegate, I don’t trust any one else to do the job without being bothered by doing it, so I do as much of all of it as I can. No, I am not an overachiever lol, not at all. I just want everything to be perfect! Well, guess what? It isn’t, and I’m not. Not perfect and NOT independent. I now am forced to rely on Mister to love me enough to help me. Guess what, strangely enough, he does! I would NOT have known the depth of his love, or the truth of it without this disease. It has brought me faith in another human, in humanity. It has brought me to a humble place where I can learn compassion, a healthy place to serve from.

I am at the beginning of my journey. It’s been just over a year now. There will be many stories on the way. There will be a lot of pain. There will be endless tears and screams.  There will be doubts and fears. I will think many unthinkable thoughts. When it threatens to overwhelm me, I will adjust, take inventory, and recalculate and make new goals. I will find the beauty in the ashes, I will rise up on wings as eagles, I will be more than a conqueror and I will be loved. This is the gift that I am left with facing the beast CRPS. I am given the chance to live in faith, to find hope, to be a light, and to receive love and mercy.  It does have a glorious side and a beautiful ending. No matter what. I live in a broken body and a broken spirit. Broken things can be rebuilt for a new purpose and a new glory and a new day. I am not a broken person, I am just being redesigned.

~Wait for it…..it will be amazing!!!

xo ~Rikki Lin

****************

Today’s guestblogger, Rikki Lin is only one year into her journey with chronic pain and she is such an inspiration already. She has started to rebuild a new chronic life by upstarting an oilfield jobs help page and she creates information posters for the CRPS community among other projects geared toward helping people. I’m very grateful she has given a piece of her beautiful self to us today. 

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