Mourning

Mourning, grieving, hurting

Those are the words that describes how I’ve been feeling on and off for the last 7 months or so. With having the flu on and off for 2 months, getting injured and having the CRPS flare up randomly.

Complex Regional Pain Syndrome takes a lot out of the people who have it. It changes almost everything. I have learned that between the fifth and tenth year of having this disease new side effects start to crop up. And this year in March was my 7^th year of having CRPS/RSD. I’ve had a new host of crappy stuff to deal with. But in dealing with the new side effects, uncontrollable vocalizations, having the CRPS flare up in my stomach and intestines and having them swell horribly, issues with my memory, more brain damage, etc.; I have had a lot of low moments. Moments where I feel if one more thing happens, I will crack, break apart, and then disintegrate. I’ve been mourning for the life I could have had without the CRPS, for the life I could be having if I was more in remission. And I’ve been grieving for all the things CRPS has taken from my life, for all the things people take for granted every day; like being able to get out of bed, walking and not suddenly falling face first on the ground, or accidently stubbing your toe and instead of it feeling better in a few minutes waiting days for it to feel better or to be able to walk on it. I grieve for what my family goes through with me. Cancelling plans because I physically can’t go out. Them getting hurt trying to help me when I start to fall or have non-epileptic seizures. I am hurting for the anxiety I feel well up in me almost every time I leave my house or go to do something. Because I think of “What will happen if I fall and get hurt?”, “What if I have uncontrollable muscle spasms and non-epileptic seizures?”, “What if I overdo it and pay for it for days later?”. A whole lot of “what ifs” and not a lot of answers. I mourn, grieve, and hurt for the box I feel sometimes closing in around me, suffocating me. And I would feel terrible for feeling this way. I want to be strong not only physically but emotionally and I have had that shaken a tremendous amount so far this year.

But I realized something the other day when I was talking to my Mom. (Please, everyone, talk to someone you trust about how you feel, a parent, a therapist, whoever, it helps!) I realized that it’s ok to mourn, and hurt, and grieve with deep sorrow for what I’ve lost. And mourning is not a one-time deal. It’s a process. Not a process of steps like being sad and then angry (not that you don’t feel all those things), but ones of sustaining an injury, the CRPS/RSD flaring up again or flaring up worse or in a different spot, doing all the physical therapy, figuring out how to do some stuff without a proper functioning limb again, because it doesn’t really get easier with each injury (though I am pretty good at brushing my teeth and eating with both hands now 😊 so positive there, right?) We grieve for that limb, for the pain, for the lack of use, for having to surmount those seemingly insurmountable odds (again), and for having to deal with old and new side effects. But by grieving, hurting, and mourning we show ourselves how much we truly love life! It sounds completely counterintuitive, I know, but mourning gives us the time we need and the outlet for all those overwhelming emotions we are experiencing, and then we realize we’ve made improvements, we’ve gotten the CRPS more under control, we’ve had some good days, because if we can hurt that bad imagine how good we can feel.

Earlier in this post I talked about what others take for granted, walking, being able to control their vocal cords, having a planned trip that goes to plan (if that can truly happen for anyone). But I don’t take things for granted anymore and that makes me happy. I know that if I can feel that deep level of hurt, I can also feel a deep level of joy. We grieve because we know things can be better and we want them to be better and we’re sad and mad that they’re not. But by holding on to the knowledge of the good that can be, the joy we can feel, we can make it through every injury, every setback, every tear-soaked-pillow-night. And maybe we mourn every day for a few minutes, maybe every couple of weeks, or maybe with every injury. That’s ok. It’s good for us. Because if we can mourn, we can have joy, if we cry, we can keep on smiling, if we break, we can be put back together as something even more glorious than before. No matter what though, we can keep on living. And that’s the most important thing to remember, life is not just the good stuff. Living is all the good stuff, all the bad stuff, and everything in between. So, let’s all have a life well lived with all the stuff.

So keep feeling and going,
Sam

Going to the Movies

Going to the movie theaters; that’s something so many people do around the world without a second thought (except maybe if they should do extra butter on their popcorn). But when you have RSD/CRPS that is rarely if ever the question (or at least not the main one).

I’ve read on blogs where some people with RSD/CRPS can never go to the movie theaters. The coldness of the theater, the seating not always being the most comfortable, the noise, vibrations, and all the other people is just sensory overload and they will spend days recovering from it. Another person I know can go to the movies without a problem. I’m in the middle. I can go to the movies but have to make preparations so I can enjoy myself and not pay for it hours and days afterwards. I thought I would share what I do and maybe some of those things can help you!

If I’m going to the movies, I’m having a really good day, like my muscles aren’t spasming and my pain levels are lower, always take into consideration how you are feeling overall before you decide what to do. And never feel bad if you can’t go!! It is not your fault! I’ve been having to remind myself of this on a plethora of things this week.

1) What you go to see. I rarely if ever go to the theater to see a movie with explosions or things of that nature. When I heard those things in real life I get muscle convulsions and my pain levels immediately go up. So, in the theater where you hear and feel all of that probably 5 times worse, it may be the smartest idea to wait until that movie comes to DVD or something where you have full control over the volume.

2) The time when you go see the movie is important. I like to go for a matinee, about a week or so after the movie was released, on a weird weekday where everyone is at work or school, so you won’t have the crowds to contend with. My mom, sister, and I just went to a movie this week and we were the only people in that theater! It was great!

3) Where you sit. I like to sit up towards the top and farther from the screen. Look for where the speakers are and avoid sitting next to them or under them. I find that the middle of the theater I go to is usually pretty good. Get there early to find that spot that will work for you, so you’ll always know where to go to grab your seats.

4) What to wear. The theater temperature is usually pretty cool. (interpret as really cold if you have CRPS/RSD). So, layer. No matter how hot it is outside I always wear jeans to the movie theater. Always wear socks and shoes, never sandals. I wear a t-shirt (sometimes with a cami on underneath), a lightweight sweatshirt or button up, and then pack a heavier sweatshirt in my backpack so if my arms get cold or need something to throw over my legs. That is for summer. In the winter I skip the lightweight sweatshirt go for the heavier one and have my jacket for extra warmth or to throw over my legs like a blanket.

5) Volume control. Movie theaters always have their sounds up so high (which I think is weird, but…) my Aunt told me about how her friend who is sensitive to noise used earplugs when she went to see a movie. I did my own research and found a pair and they have been a game changer! It does take some getting use to, but it takes the sound from deafening movie theater volume to a tv that is turned up just a notch or two too loud. I find that that level doesn’t bother me much.

6) Pain management. Try to plan to go to the movies so that your pain medication (anxiety medication, whatever you are on) is scheduled that you take one when you go in to the movie and one soon after you come out (if that is possible with your medication, it is with mine). This has helped to keep my pain levels and anxiety down during the movie and then it doesn’t creep up after the movie because now I’m coming off of all that stimulation. As always Take your medication responsibly and as prescribed!

So those are the 6 things that I do so I can go to the movies occasionally and enjoy myself! And give my answer to the extra butter question (it's Yes!)

I hope some of this helps you!

Be kind to yourself!

Sam

Goals

With it being the new year, I’ve been hearing and thinking about “New Year Resolutions”. To tell you the truth, I don’t like new year resolutions. There’s that negative connotation with them that they will never actually happen. For example, lose weight, eat healthier, exercise more (or at all), etc. Now all these things are fantastic things to do! Getting healthy is wonderful. But do you notice something with all those resolutions? They are all physical ones. Not that they don’t also help with your emotional and mental health, but their focus is on the physical. When you live with RSD/CRPS your focus is always on your physical body; How does it feel today? Pain level? Where is most of the pain? What kind of pain? We all know the questions. So, having resolutions, that may or may not be kept, all focusing on the physical body isn’t always that great for us.

My preference is the term “goals”. You can make goals anytime of the year for whatever. There isn’t that connection between goals and the new year. So, goals can be an idea, an aim, or a fresh start for something at any time. When goals are talked about, they are usually equal in physical, emotional, mental, and spiritual aims and desires.

My doctors and physical therapists often asked me what my goals were for my health. And initially I would say by Christmas I want to be able to walk, or something like that. But as the years have gone on and different effects of the RSD/CRPS have come up in my life I couldn’t always meet those goals that I had set. By then I had started to develop anxiety and depression and they would be exacerbated as the time I had set for myself to achieve my goal came closer or passed without the improvement that I wanted. I felt totally hopeless. I felt that I had given myself sufficient time to get better, so why wasn’t I better? What should I have done to reach that goal? These were thoughts that were constantly in my head. Sometimes I felt that if I had worked harder, I would have reached it. So, I stopped making them. I decided that I would get better when I got better; and I would work toward that but not set a date for it. This helped quite a bit, I wasn’t as depressed or as anxious.

But recently I’ve been thinking about goals that don’t focus on the physical but on the emotional, mental, and spiritual. I can be really hard on myself, I’m probably my worst critic especially when I’m having anxiety attacks and depression. I have brain fogs where I don’t remember if I’ve said something or what just happened a few minutes ago. I can’t always remember what I just read and if I do sometimes it makes absolutely no sense. I’ll be in the middle of saying something and loose what I was going to say next or can’t think of simple words. This is so frustrating! I know a lot of people with a variety of chronic illnesses can relate to this problem. With this anxiety, depression, and brain fog I can really feel down on myself. But I don’t want to. I know I can’t control all of that and it is not my fault. Now comes in my goals for the year; my emotional, mental, and spiritual goals.

-I will work to not be so down on myself. When thoughts come that are negative about myself, I will think of several positive things about me. (This can feel very weird, but I believe can be helpful. If you need help go to trusted family and friends or to this blog, we’re all here for each other).

-I will let my trusted family members know more about what I’m feeling. Now, this one is really hard for me. I am a very private person and don’t like to cry or really have any strong emotions in front of other people. (So it might seem odd that I decided to start a blog where I talk about all of that stuff but I want to help people with chronic illness and believe I can do that through this blog and opening up about my battle) I usually just hold it all in until after everyone else has gone to bed. But I know that I’m surrounded by people who care about me for a reason and that they can help me; I just need to let them.

-I am religious, I believe in God, and so I want to work to pray to Him more. In those moments when I feel most alone, misunderstood, and overall just terrible I want to remember to pray. I also want to remember to pray and thank God when I have a good moment or feel happy.

Those are my goals for my mental, emotional, and spiritual health. They may change throughout the year or I may add new ones. That’s the beauty of goals. They can change and grow, just like us. I’ll keep working on my physical health too. Exercising when I can. Eating healthy (which includes ice cream and chocolate 😊). But that’s not going to be my focus for now. Right now, I’m learning to accept my body and my life for what it is and appreciate everything around me and for me that means having goals that support my emotional, mental and spiritual well-being.

I hope these have inspired you to think of some goals for yourself. If you feel comfortable please share them with me! Remember, goals are made up of tiny steps, so don’t get discouraged if you aren’t making huge leaps and bounds towards them. You’ll get there. Just keep going, keep living, keep laughing, keep being your one amazing self.

Sam

Welcome to my blog!

Hi,

My name is Samantha. Welcome to my blog. I don’t know how many people, if any, will find this blog but I felt that I should start one to share my experiences; to help someone the way that I’ve been helped and inspired by other people’s words.

So, to introduce my self further, as I said my name is Samantha, I go by Sam. I am a Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome warrior and fighter. Okay, that sounded super dramatic but totally cool. So, to my fellow warriors: we are totally cool! I mean who else can memorize and say all those really long words and look as awesome as we do saying them!? Am I right!? =)

I hope I was able to make you smile there and laugh. I want to create a space where people who have RSD/CRPS can come and feel completely safe. You’re not judged here. You are understood. Everyone’s RSD/CRPS is different so we may not feel exactly how you feel but we get it. You are not alone. I’ll be sharing links to websites and blogs that have helped me understand this chronic disease, feel understood, and know that I’m not alone. I hope to be able to help someone else the way these people helped me.

That’s why I am calling my blog “Living Me with RSD/CRPS & Stuff”. I’ll be talking a lot about the disease and living with it and all that it can entail. I hope you share how you are feeling and are living with it. I have two favors to ask when you do.

1) Please do not use curse words. I know sometimes those words feel like the only strong enough words to describe what we go through but not everyone curses, and it makes them uncomfortable and again I want to create a comfortable and safe space. Please help me to do this!

2) We all need to vent on how we feel and what we are going through. And when you do please add in something that is positive. Sometimes it seems like there is nothing happy or positive in our lives but I promise, there is, and you’ll find them as you look. Like, one happy thing you could say is, “I ate ice cream today. Because it makes me happy. It should totally be its own food group”. If I saw that I would smile, laugh, and say, “I totally agree, it should be!!”. I was happy, and you were too. It could even be, “I got out of bed today”. Because that is a big thing and something to celebrate! 

Nothing is too simple to be positive and happy.

Let’s be there for each other in the negative and for the positive.

To my fellow warriors and anyone else looking through this blog,

You are amazing! You are strong! You rock this!

Sam