Wednesday, April 29, 2009

Wheelchairs are a pain!

It's raining again!!! Not only does this make me hurt more, but it makes it nearly impossible for me to get out. Everything I do in a wheelchair takes me at least twice as long as it would take if I could walk. Plus, with both hands needed to work the sucker (and steer appropriately - which I don't always do), I can't hold an umbrella. I just get soaked. And the wheels pick up all of the dirty water from the ground, and neatly deposit it onto my pants.

I live in Texas now, but I grew up in NY. I went back for a visit one February without thinking it through first. I was not in the wheelchair until I moved to TX, and we don't get snow down here. The trip to NY in snowy weather was a mistake. The shoveled paths were fine for walking, but they weren't wide enough, nor shoveled cleanly enough to accommodate a wheelchair. Plus, if dirty rain water on your pants is gross, try slush on your wheels, then on your hands and pants. And, once a wheelchair is wet, because it's material/leather/whatever else, it stays wet for hours. It's just miserable.

Don't get me wrong, wheelchairs can be a blast. I pop wheelies, I do donuts, I ride up escalators which always makes people gasp, my feet never get tired after a long day at the mall, my shoes last a lot longer than most, I bring my own seat to "standing room only" events, and the ramps, especially the ones in malls with tile floors, you can really pick up some speed on those babies. Weeeeeee!! And riding around with my nephew in my lap is great. Also, I am certainly grateful for my chair; it allows me more freedom than I would have otherwise. All that being said, the thing really is a giant pain.

I had dinner out tonight with my husband. The rain was hard enough that I was soaking wet and cranky as we came in the door of the restaurant. As we were leaving, it was raining even harder than when we walked in. Here I was about to get a really good "grumpy" on, and a man that I didn't know insisted on going to his car, getting his umbrella, coming back to the front door, allowing John and me to borrow the umbrella to get to our car, then waiting at the front door of the restaurant for John and me to drive around and give his umbrella back. As I said a few posts ago ("When life gives you lemons, make lemonade!), I get to see people behaving at their best. It sucks to be in the chair, but it's nice to see people behaving so kindly towards me. I get my faith in human kindness restored on a weekly basis.

Also, wheelchairs make you short. I can't reach the top 2 shelves in stores, I don't do well in crowds because I can't see and I can't be heard from way down there (although, I suppose I could just bowl everybody down, but that wouldn't be nice), and, although places have gotten much more handicapped accessible, there are still a lot of places I can't go. Take one day and notice the steps, the non-paved terrain, the stores crowded with merchandise; it's just a pain.

But, I think beyond all that, I hate my wheelchair for emotional reasons. I just hate the way I look in it. Sure, it's better than the alternative - being stuck in bed simply because I can't get around - and I don't mean to sound ungrateful, but somehow I feel more crippled in the chair. I'm nutty about having to push it myself; I don't like when people see me being pushed in my chair - somehow, that's even more crippled. What's ridiculous is that I think nothing of seeing other people pushed in their chairs, yet I still feel somehow "less than" when I need help. I hate being dependent. I think that must be God's lesson for me in this life: asking for, and accepting help gracefully. I suck at it! My motto is "I can do it myself!" That's all well and good when doing it myself doesn't cause me pain or injury. I'm all for being as independent as possible! But not when I'm gritting my teeth in agony just to push my own wheelchair. And that independence lead to a near disaster with the chair a few years ago.

While my husband had both of his arms in casts (see my earlier post: "Seeing pain from the outside."), we decided to have dinner with some new friends - a wonderful couple who we are now very good friends with. It was our first time out with this couple, so I had to prove how independent I am. We came to the curb to get up on the sidewalk. Instead of asking for help, I decided to pop a wheelie, get my front wheels up on the curb, then lean way forward to pop the back wheels up. Voila, I would be on the sidewalk all by myself, and everyone would know that I'm not crippled, I just can't walk. So silly, I know. Well, I got the front wheels up without incident, then I leaned way forward to pop my back wheels up ..... just at the moment that our new friend decided to help me, and grabbed the handles of the chair and lifted. Do you have the mental picture of this? Me leaning waaaaay forward, and him lifting the back of the chair. Out I went. I landed flat on my face on the sidewalk. I wonder if he was convinced of my independence at that moment!

Luckily I wasn't hurt. The poor man - I thought he was going to die, he felt so bad. Luckily he noticed I was silent on the ground because I was laughing so hard, so everyone joined the laughter, and we're left with a great story. But I'm also left with a lesson. People want to help!!! Why am I so bad at accepting help? Why am I so crazy about showing people how independent I am? Even to my own detriment. It doesn't make me any less of a person that I am disabled, and it doesn't make me any less of a person that I am disabled enough that I need help pushing my wheelchair. I refuse to get a scooter or motorized wheelchair for the same stupid reason: I feel like somehow I look more crippled in it. It's ridiculous!!! My head understands that, but my heart, my soul, my gut remain unconvinced. I'm working on it.

Tuesday, April 28, 2009

But I'm still in pain ...

I have been spending a lot of time online looking for different websites about chronic pain to add to this blog. At every website, I find similar posts that read something like "I have [insert pain disorder] and have been taking medications, doing my exercises, doing everything the doctor recommends, and I still hurt." I can't tell you how many times I have read this post; and I can't tell you how many times I said this myself - to anyone who would listen.

About 4 or 5 years ago, I had a real epiphany on this topic. It was one of those ah-ha moments that really stuck with me. It occurred to me that "pain management" didn't mean that the doctor was going to get me to "pain free." I realized I was never going to achieve "pain free," what I was striving for was a level of pain that I could live with.

That was huge for me. I kept saying "but I still hurt," and my doctor would say "of course you hurt, you have RSD." He would send me to physical therapists and psychotherapists which I didn't understand. I thought, I'm not crazy, I hurt. Then I would assume that he was sending me to a psychologist because he didn't believe me about my pain. And I see a lot of people on these groups making the same leap. "My doctor wants me to see a psychologist. He obviously thinks my pain is all in my head." NO! He is sending you to a psychologist because he knows that you have an IMMENSE job in front of you: learning to live with pain. My doctor understood that he couldn't fix my pain; I was the one choosing not to understand that. I would say, "I don't need a psychologist, I need more pain relief!" What he was telling me, in so many words, was "I have nothing else for you, you need to find a way to cope with what you now have." That's difficult to accept, so I didn't; I continued to misunderstand and say "but I still hurt!"

It is something that nobody wants to accept. Nobody wants to hear their doctor say, "You have a disease that I can't cure, and I can't relieve the pain." I sure didn't want to accept that. I kept saying "but you don't understand." What he was trying to say is "no, you don't understand." Now I understand. Pain management means finding ways to cope with a life full of pain. Meditation, psychotherapy, yoga, whatever it takes to help stay on top of the pain.

I suppose that's what I am trying to do with this blog: give people tools (hobbies, pets, friends, etc.) to cope with the pain that is now their constant companion. In many cases, your doctor doesn't have the magic pill that you so desperately want. That is a devastating thing to take in, so many of us choose not to hear it at all. But we have to understand it to start moving forward. You can spend your whole life in bed, moving as little as possible to try to minimize your pain (and probably still hurt anyway), or you can understand the goal of pain management which is to find a way to live with pain. To accept that you will hurt, and carve out a life for yourself anyway. It's not easy, but it's much more worthwhile.

Monday, April 27, 2009

Seeing pain from the outside.

My "other half" John (heretofore called husband) had a ridiculous accident about 3 years ago, and we both learned so much from it. He managed to break both arms playing racquetball! Yes, both of them!! I won't go into the details of how, needless to say, he's not allowed to play racket sports anymore.

He was in the hospital having a cast placed on his badly broken left arm when a nurse walked in and said "oh, by the way, you broke the right arm too." WHAT?!? By the way? That changes everything. Think about it ... what can you do with 2 broken arms? Nothing! And me in my wheelchair with him with casts on both arms - we looked ridiculous. The running joke was "What has 2 arms, 2 legs, and 2 heads?" The answer: The 2 of us at that time.

We had a couple of months of recovery time to figure out how to handle this. But we handled it. We may have looked strange, and some things may not have been done up to our standards (we had a lot of delivered food, and the house wasn't so tidy), but we managed.

Most interesting was the role-reversal. I was used to being the patient, the person in pain; he was used to being the care-giver, the person on the outside being frustrated that he couldn't do more. I learned just how very frustrating it is to watch someone you love hurt. I would have done anything to take his pain away. He had many excruciating procedures to fix the left arm, and I would be reduced to tears every time they manually manipulated it. His face would turn purple and he would try not to scream out in pain. It was a horrible thing to watch. I have never felt so helpless in my life. I had never felt the pain from that side before.

He learned how frightening it is to be facing a painful procedure. He learned the exhaustion of being in pain all the time. He learned the frustration of pain medication that doesn't take all the pain away, but gives you terrible side effects. We each saw pain from the other person's view point for the first time. It was truly an eye-opening experience.

From that, I learned how difficult it must be for my loved ones to see me in pain. How must my mother feel? She's the mommy, she's supposed to kiss my boo boos and have them be all better. How must my husband feel when I cry and writhe in pain and there's absolutely nothing he can do? He's there by my side, holding my hand and saying sweet things to me which helps a lot, but he can't take the pain away. How must anyone who cares about me feel when I'm having a bad day? It's an incredibly frustrating thing.

It just proves that chronic pain affects so many people. You don't have to be the one with the pain to suffer. So here's a nod out to all of the people who watch people that they love suffer with chronic pain. You are appreciated, and, at least by me, you are more understood. Thank you.

And know that just by sticking around, you are stronger than many. I lost a few friends at the beginning of all of this. They had varying reasons for pulling away from me, but I know it was because they just couldn't handle it. I was angry at the time, I thought that was very cowardly. After all, I was the one in pain, not them. Now I have learned that that's not really true. It is very painful to watch from the outside. I have learned to really appreciate my friends who tough it out. And I hope they know how very much they mean to me, and how very much they do for me just by being there. When I'm having a really bad day, I know that nobody can take away the pain - if I can't do anything to ease my pain, and the doctors can't do anything to ease my pain, I don't expect my friends to. Just being there, maybe rubbing my back, saying sweet words ... that does more than I can say. And I know that I'll have friends around for my next good day, and we can go play. If they can be there for the bad days, then the good days are a cake walk!

Thank you all.

Sunday, April 26, 2009

It's easy to believe in God when life is going well.

I have found myself, since getting RSD, having a serious crisis of faith. I have always been somewhat of an Agnostic (drifting toward paganism if it must be defined), with sort of a sketchy idea of who I thought God was. Since becoming injured, and living in such pain, I'm not sure what to think about God. If God is so good and so powerful, and loves us so much, why does he allow suffering? Not just my suffering, but any suffering. It seems to me that if God could end suffering, then He's a bit mean-spirited if he doesn't. If He knows I'm on the brink of survival, hanging on to my last thread of coping, why doesn't He help me?

I've been told that "God never gives you more than you can handle." I'm not sure I buy that. Sure, that's nice in theory, but He has sure given some of us a heck of a lot more than others. And how do you account for the suicides from chronic pain? There are clearly, well-documented cases of people suffering from horrendous pain, taking their own life because they just could not cope. So God did give them more than they could handle.

Okay, I've also been told that "there's a bigger plan, we just can't see it." Well, that seems very convenient. If that's the case, and it was preordained that I would suffer, then what's the point of all of my fighting. Why battle disease if it's inevitable.

I've been told that "if I just prayed to the right God, He would help." Oh, nice one. Put the burden of my suffering square on my shoulders. That sounds like the doctors who, when they run out of ideas, blame the patient. Essentially, it's my fault. Well that's an awful small and petty God too. He could help me, but He has chosen not to because I worship Him by a different name.

Then there's "God doesn't catch every falling sparrow." The Universe is too big for God to deal with the small things. Sometimes people just have to suffer. Then why pray at all? And certainly, why do we pray at a child's football game? Why do we pray for good grades in school? These things sure seem smaller than suffering. And why can't God answer every call anyway? If He's all-knowing and all-powerful, then how can he be too busy to answer even the smallest prayer. "God doesn't catch every falling sparrow" sure sounds like "He can't do it all - There are limits to God's power" to me.

I keep getting back to, if there is a God, and he loves us so much and wants us to come to him when we are suffering, why doesn't He intervene? Why can't He give me the one day off that I've been asking for for years? I just need one day to catch my breath and get back on top of this pain. One day to remind me what it was like to live pain free. It's been so long now that I don't even remember what it was like to feel well. To be able to just run out to the store for something - now it's an ordeal of wheelchairs and crutches. Or to be able to take my nephew to the zoo? Is it too much to ask for for just one day? Apparently it is. Because I have been asking for years, and so far, nothing. Either He can't or he won't. which is it?

But more to the point, how do I keep believing in a God who has left me here? He sees all, He knows all .... then he knows my crisis. Is he incapable of helping, or is he choosing not to? I'm not sure it matters, either of those lessens God in my view.

I haven't said any of the above to be inflammatory. Believe me, the last thing I need or want is to make people angry. I say it because it is a true crisis of faith. God was very easy to believe in when things were going well. Now, when I need Him the most, I have so many unanswered, and unanswerable, questions.

Saturday, April 25, 2009

Boredome yields depression!

I am knitting a baby afghan today. Who cares? What does that have to do with chronic pain? I used to be a cheerleader and a gymnast. I used to play volleyball, I roller skated, and I loved to go skiing!! Wow, I really miss skiing.

All of a sudden, I couldn't do any of those things anymore. I was left thinking about all of the things I couldn't do, and all of the things I would never get to do. I wasn't married, and now I will never walk down the aisle to my husband-to-be. I will never dance at my wedding, or anywhere else, again. I will never enjoy any of the hobbies that I loved so much.

For a long time, it was all I could think about. I would lie in my bed and cry about how unfair life was. I still had so many things that I hadn't gotten to do yet. It's a huge part of what led to my depression, and held me down for so long. I was bored! I had to make an active choice to look forward, to stop looking back at all of the things I can't do. I had to find new hobbies, and I had to carve out time every day to do them. Sitting around being bored, and thinking what you could be doing "if only...." is a recipe for depression. And once you're down, that boredom will keep you down.

I took up knitting, crocheting, scrap booking, and card making. I make afghans and baby hats, and donate them to charities. I tried art, I read a lot, I have enjoyed listening to old-time radio. I also love to put out lots of types of bird food and watch all of the different birds. It's amazing how long I can spend staring out the window "watching bird TV" as my sister termed it. There are plenty of things I can do. Do I still miss my active hobbies? You bet!! I would love to go skiing again, but it's not going to happen, and I'm okay with that.

Friday, April 24, 2009

How are you?

Well, since I wrote about my second least favorite question yesterday: "What do you do?", I'll write about my #1 hardest question to answer tonight.

"How are you?"

Okay, granted, it depends on who's asking. Your basic person on the street, the answer is "Fine thank you, how are you?" Not so difficult.

But when people who know my situation ask, they are asking a bigger question than that. They want to know what kind of day I'm having. That's great if I'm having a good day, but what do I say when I'm really feeling lousy, but I'm fighting to stay on top of it. Do I lie and say "I'm doing ok," or do I tell the truth and say "lousy, thank you."? I suppose anybody who asks me how I am wants the truth, but I get afraid that if the answer is "lousy" too often, they'll get tired of asking the question. There in lies the issue I suppose. I really want people to care enough to ask, but I'm well aware that nobody wants to hang around with a complainer. Certainly it's one thing to complain for no reason, and another to be just telling the honest truth. But I know that my loved ones really want to hear "I'm doing really well today," or "Much better, thank you." They want me to say that because that's the truth, not just to say it. And goodness knows I want it to be the truth. But more often, that's not the truth. Perhaps the answer is exactly as I said above: "I'm really feeling lousy, but I'm fighting to stay on top of it." Yet I still feel that people will get tired of that answer and stop asking. I'm still afraid of chasing friends away.

Maybe that's how you find out who your true friends are. People who can't deal with the situation will fall by the wayside. I lost a couple of friends shortly after I was diagnosed because they couldn't cope with the changes in what we could and couldn't do, and I think some of them just couldn't cope with my pain. I'm sure the thought of a contemporary having an incurable disease is frightening. It makes you face your own fears and mortality. "There but for the Grace of God go I." Also, in the beginning, I didn't have such a chipper attitude, to say the very least; I'm sure that drove some people away. And I suppose some people might not be able to deal with me canceling plans at the last moment, or sometimes needing extra help. Finally, I know that on my very worst days, I get very reclusive. I don't know why I do that, you'd think that would be when I would need people the most, and yet I've heard a lot of other chronic pain sufferers say the same thing. I just don't want to talk to anyone when I'm in that much pain. I can't imagine making small talk and having to sit up and be polite when I am working hard just to maintain horrendous. Plus, on my worst days, I get angry about it.

I think, once again, I've come back to my own insecurities. I get so tired of feeling lousy that I assume my friends will get tired of me feeling lousy. I am so sick and tired of being sick and tired! I have absolutely no patience for my pain anymore, so I fear that my friends are sick of it too. I know a friend is supposed to be around in good times and bad, but this seems like a lot to ask of people. And yet, I wouldn't hesitate to be around for my friends if the roles were reversed. I guess I never want to be a burden on my friends. And more so, I'm afraid that if I am a burden, I won't have any friends.

So much for not being ruled by my fear. I think I have to work on this one. Any thoughts? Are there other chronic pain sufferers who feel like a burden? How do you handle it?

Thursday, April 23, 2009

Choosing to do things anyway!

As I said above, I spent yesterday with my soon-to-be five-year-old nephew Luke. He wears me out, but I love it. I love that we are so close (along with my sister and her other 2 kids who I also adore - they are a bit older and don't need babysitting anymore), and I love that my sister can call me for help and I can feel useful for a change by babysitting. As I also said, my sister felt sad that I only thought myself useful on Wednesdays when I babysit. I thought about it, and realized that I haven't come as far as I thought I had on that front.

Let me start with, I love spending the day with Luke, even though I know it's going to hurt. As with doing things with any of my friends, I choose to do things even though I know I will pay for it. It's very liberating to know that I am making that choice. My pain isn't making choices for me, and, more so, my fear of my pain isn't making choices for me! I choose to do something, knowing it will hurt. And generally, it's worth it. I have always thought that "the pain that I earn is better than the pain that I get for no reason." I can sit home, and I will still hurt. Or, I can choose to go out and enjoy time with friends &/or family, and I will hurt, but I will have had a good day. My choice!

But back to the useless thing. When I was first forced to stop working (back in 1994) due to the pain and all of the medications, I felt strange and out of sorts. I felt like people would look at me differently because I didn't have a job - I didn't "do" anything. It wasn't that I defined myself by my job, but I felt like I was supposed to at least have one.

Then, when I got on the tax-payers' payroll (ie started collecting Social Security Disability), I felt even worse about myself. There are so many people who cheat the system, who steal money that they are not entitled to, that it leaves an ugly blemish on those of us who honestly need the help. I feel the stigma of being on Public Assistance. Why? I had a job, I paid my taxes, I did all the right things, and because of something completely out of my control, I was unable to work. Not that I didn't want to work, I was unable. Believe me, I don't think there is a chronic pain sufferer alive who wouldn't trade their "life of leisure" sitting at home in pain, for a job. I would work any job rather than feel the pain that I feel every moment of my life. I almost said "every waking moment," but it's in my sleep too. I have night terrors when I wake up screaming - a blood curdling shriek, my other half would say.

[As an aside, my other half is John. We are not married, but we have lived together for a while. At my age (44) and stage in life, the term boyfriend sounds absolutely ridiculous, leaving me not knowing what to call him. He will be John here, but sometimes I also call him my husband just for terminology sake.]

I would have some dream like I'm being flayed or burned alive, or someone is pulling my leg off. I wake up screaming, and know that it's my pain invading my dreams. I don't even get sleep time off from the pain.

Anyway, when people would ask me "what do you do?" I would shamefully say "I'm on disability." Somehow I felt "less than": less worthy to be in an intellectual conversation, less worthy than all those hard-working folks who were having to support me. John finally made me a sign and hung it in our apartment that said "My job, the one for which the government is paying me, is to take care of myself and get well." He was right of course. My full time job was to manage my pain. And yet, I still didn't know how to answer the question "what do you do?" Why am I still embarrassed to be on public assistance? It's not my fault, nor is it my choice. And yet, the stigma sticks to me. Or do I stick to it? I know I'm too hard on myself, but I still feel less respected because I don't work.

I now answer the question with "I am unable to work" because, somehow it feels better to imply that I can't work, not that I don't want to. But I shouldn't have to justify. I am exactly the type of person that the system was set up for. This is America, we help those less fortunate. That's me: I did it all right and played by all the rules, and now I find myself unable to work. It's not my fault.

Of course, then there's the inevitable follow-up question which is "what's wrong with you?" I work very hard at not "looking sick," at not even looking like I'm in pain. And yet, if I answered the question with "I have cancer," people would say "oh, I'm so sorry," and they would instantly understand. I say "I have RSD," people say "you have what now?" Ok, "I have an incredibly painful nerve disorder for which I take 40mg of Methadone per day, and anti-depressants so that I don't lop off my own head from the pain .... oh, TMI?" Not only is it too much information, but it's intrussive. Why do I have to justify why I'm on disability. I know people are curious, but do they really have a right to know what my health status is? Not that I mind answering questions, I just mind feeling like I have to justify myself. I mind the questions that feel accusatory instead of just curious. Perhaps that's just in my head, along with feeling useless just because I'm not out there doing something to earn my keep.

My job is to maintain my health as best I can, and manage my pain. That's it! Now I just have to believe it.

Wednesday, April 22, 2009

A day with Luke!

Well, I promised to try to write every day, but what I'm writing today is a "come see me tomorrow" post. I spent the day with my nephew Luke today. He is about to turn 5 years old, and he wears me out and makes me feel great about myself all at once. I am completely exhausted and in a tremendous amount of pain, but I feel like I did something really rewarding and helpful today. It's worth it!! But I've learned a lot on this topic too that I really want to share, so I will discuss tomorrow.

Preview: I feel useful today because I babysat and helped my sister ..... but does that mean that I feel useless all other days? I babysat last Wednesday also, and I told my sister how good I felt about myself; she thought that was sad because it meant that I didn't feel worthy somehow on other days. She's right, I shouldn't feel that way. More tomorrow!

Tuesday, April 21, 2009

The importance of pets!

Hello all. As I hope this will become a place of sharing ideas, here's one from me. Please join in and write your own.

I counsel folks to have a pet. Even if all you can handle right now is a goldfish, have something to care for. Since my diagnosis with a very painful, incurable nerve disorder, I have always had a pet. Actually, the first pet, an adorable, very needy, 8-pound-toy poodle named Gizmo, came shortly after my diagnosis. My sister Elizabeth helped me pick him out from the Coppell Humane Society, and, as she is very fond of reminding me, I then called her at 3:00am in a blind panic. I said "I can't even take care of myself, how am I going to take care of a dog?"

She talked me down that night, bless her very sleepy heart, and I had Gizmo for 14 years. He has since passed, but he was one of the most important parts of my life during the bleak years. He would sit in my lap all the time, he would lick tears off my face, he would look very pathetic and sorry for me, then he would get a look on his face that I would swear was saying "ok look, I've helped you all day, now get your butt out of bed because I want to go outside now." I heard him loud and clear. And what he was telling me was that it wasn't all about me, I was not alone, other people in the world have needs too. He was really great at teaching me unconditional love, and he was equally great at not allowing me to wallow in self-pity. Thank you so much Elizabeth for talking me into keeping him; that was the best thing you ever made me do!

Since Gizmo, I've had a menagerie of other pets, and they all have taught me things. I had a little beige mutt who taught me how to be good and faithful. He was not a terribly bright dog, but he was always there at the foot of the bed watching out for me. There have been a number of cats who have taught me the value of cuddling with a warm kitty. They also taught me the value of asking first, as kitties who don't want to be hugged can cause a lot of bleeding. There is a delightful weiner dog named Sadie who is the house clown. She constantly makes me laugh, and there is real value in that. We also now have a black-lab mix, Buddy, who was found roaming around (all of our multitude of animals have been rescues, we have yet to pick a critter, they all pick us) in need of a loving home. Well, a few weeks after we opened ours to him, he was diagnosed with a terrible cancer. We were told his life would be counted in weeks. We were devastated. That was about 7 months ago, which teaches me that the doctors don't know everything. They are paid to be consultants on our bodies (or our dogs'), and they do the best they can, but it's still our body and we know it best. Buddy has taught me that it's all in the out-look. He doesn't know that he's supposed to be sick, nor does he know that he's supposed to feel sorry for himself. So he doesn't; he runs and plays and loves his backyard. The reality is he has cancer, and his life is short, but he's here now and we love him. I don't want to waste the time we have with him feeling sorry for him or for me. So we play.

Ok, this may be really simplistic, but there's a lot to be said for what animals can teach us, and what they give us. For me, having something to care for gives me time in my day to stop thinking about my pain. No matter how much pain I'm in, they still need to be fed and walked. They don't allow me to pull the covers up over my head and stay in bed all day. They love me, and they insist that I love them back. Maybe, the next time you hurt, get up and feed your goldfish (not every time you hurt or the poor fish will explode) or feed the birds then watch them from the window. Work up to a cat or a dog who will have needs of his own.

Monday, April 20, 2009

When life gives you lemons, make lemonade!

I can't tell you how much I hate that saying. It's so cloyingly sweet and trite. It goes along with:
  • Well it could be worse
  • Well at least you have your ....
  • You're not handicapped, you're handicapable
  • You're not disabled, you're differently-abled
I really hate all of those sayings because they're just so silly and meaningless. Worse, it makes me feel like that's what able-bodied folks say to disabled folks to make themselves feel better. Like you're saying something to me that, first-of-all I've never heard, and second-of-all is going to make me feel so much better. It doesn't. I think politically correct speech has brought dialogues to a stand-still. Everybody is so careful not to offend me that they just look over me like I don't exist. Like I'm deaf; like I didn't hear your child just say "mommy, that lady's in a wheelchair." I would rather hear the mother open a dialogue about it with her child than hear the inevitable "shhhh, don't look at her." There's nothing here that I'm ashamed of, so why is the topic of my disability so off limits? Of course, while I'm eating dinner, I don't need to tell the whole story to the server (not that I mind), but certainly little kids are curious, and I don't mind that. It's so very honest when a child comes over and says "why are you in a wheelchair?" So let's lose politically correct speech, let's ask the questions that we both know you want to ask (frankly, I'm curious when I see someone in a wheelchair too), then we get the 800 pound gorilla out of the room and we can move on to other conversation topics.

I've also learned another thing about silly sayings like "God never gives you more than you can handle." I've always thought they were really rather insulting. But it's actually the reverse. I really think that people so want to help, and with something like this, they can't. So they at least want to say something that will make me feel better. That's a nice thing. It may be one of the only good things about being disabled, but I get to see people at their very best. I see people trying to say something that, although I may have heard it a million times and it doesn't really make me feel better, was intended to lift my spirits. I have people hold doors for me. When I am using my crutches, I am very slow. I will tell someone holding the door "it's okay, I'm very slow, it will take me a while to get there," and inevitably they say "oh, that's okay, no rush, take your time." People go out of their way to open doors for me, help me with things in stores, reach things that I can't, and even help me get my wheelchair in and out of the car. That's not meant to patronize or to assume I can't do it myself, that's an act of kindness.

A gal was talking to me today and said that someone told her that she should go to the gym because the chemicals released when we exercise are some of the same chemicals found in anti-depressants. She was fuming! She was really angry, assuming this man had just called her fat and lazy, and that if she wasn't fat and lazy, she wouldn't need her anti-depressants. First of all, she wasted a lot of her day being really angry, and the guy who said it didn't even know about it - so she certainly wasn't punishing him. But mainly, "you should never attribute to malice what should be attributed to stupidity." That doesn't mean that man is stupid, but perhaps he said something insensitive. Maybe he was honestly trying to help. I am hoping that this blog will open a dialogue with other folks who hurt (and those who don't) to try to offer ideas on how to get over the rough spots. Maybe that's what he was trying to do: offer an idea that had worked to make him feel better. And this gal was a bit over-sensitive and got angry instead of thinking, "well, thanks for the advice." Not all advice is useful to me, but I certainly appreciate someone giving me advice on how to feel better. Perhaps, instead of being so angry, her answer could have been "thank you." Then, if he really was being mean, he would have been the one with the ruined day, not her.

Sunday, April 19, 2009

I missed another event!

Well, the rain has finally stopped, but I'm left with the residuals from a rainy spell: left-over pain, grogginess from the extra medication, and I'm so over-tired from not sleeping for a couple of days. But at least it will be getting better.

The problem is: today is my father-in-laws birthday, and we intended to go over there for the day and celebrate. I got up this morning, and I knew that I just couldn't. I couldn't even get up to wash my face and brush my hair. So I had to let myself and other people down ... again.

I have missed so many events because of RSD, I can't even count them all. I even missed Christmas one year. This disease doesn't have any consideration for my plans. It makes it really hard to make plans at all. I know that I have good days and bad days, but I don't get an advance calendar to tell me which will be which. So all of my plans have to be tentative. Well, how do you make tentative plane reservations? How do you make tentative plans to attend a wedding, or even enjoy Christmas with the family? I miss out on a lot, and it's disappointing.

Worse yet, I feel like I let people down. Yes, my loved ones all know that when they make plans with me, there is always the caveat: "as long as I feel good." But it still feels awful to call my in-laws and say "I'm sorry. I won't be able to celebrate your birthday with you." It feels awful for me, but I also feel horribly guilty that I'm spoiling the day for other people. I know that I'll be disappointed sometimes, but people around me end up getting hurt too. It seems so unfair. RSD can steal from me, but it shouldn't be able to steal from those around me.

I used to just not make big plans. I didn't even go to my best friend's wedding because I was so afraid of having a bad day. She lives in Washington DC, and I was too afraid to even go to her wedding. I thought about the plane and the 5 days in a row having to be "up." It terrified me: "What if I have a bad day?" "Can I even fly, or will that hurt so much that I'll humiliate myself ending up on the floor of the plane?" So I just didn't go! That wasn't a good solution; I ended up just missing everything. And, it was allowing my fear to rule me. I realized that it wasn't the pain holding me back, if was the fear of the pain. That was a big realization for me. I always said, and honestly believed, that it was the pain and the RSD that was keeping me in bed. It was a real paradigm shift to understand that it was the fear of the pain that was taking everything away from me. I finally just refused to be ruled by fear. I know some things will cause me pain, and I make an active choice whether to do them or not. Do I want to take my nephew to a playground? Yes! Do I really need to climb the monkey bars with him? Ok, probably a bad choice. Doesn't mean I don't still do it sometimes, but I know I'm being dumb while I'm doing it, and I've chosen to do it anyway. It feels powerful to make those choices for myself, rather than being ruled by fear.

But back to the original topic, I still don't know how to really believe my friends and family when they say that they understand that I might have to cancel plans at the last minute. In my head, I believe them, and I know they are choosing to see me sometimes with the understanding that I might have to stand them up at the last minute. But I still feel really bad when it happens. I'm not sure there's an answer to this one. I think I just need to get over it. As a friend says, "build a bridge, and get over it!" Sometimes easier said than done.

Saturday, April 18, 2009

The tone of this blog

I had trouble with that last post, I wasn't sure what I wanted the tone of this blog to be. I want it to be upbeat, but honest. I don't want to preach nor do I want to pass myself off as an expert on anything. So I guess I'll just tell my story, and let it go where it goes.

Readers, please pass this on to anyone you think might get something out of it. Also, please feel free to comment. Perhaps you live in pain or know someone who does, and there is a topic that you'd like to discuss. I'd love to hear it.

I am a living barometer

It's raining again. It's been raining for 3 days now, and I'm not happy about it. Anyone who has ever sprained an ankle or broken a finger knows that it aches when it rains. When it's your whole body that hurts, the rain can be hard to take. And after a few days of it, I'm sure it's never going to stop and my pain level is never going to go back down. Somewhere in my head I know that the sun will come out again and I'll feel better, but when I'm in the middle of the most painful days, all I can see is the rain.

Perhaps this is the best lesson in living the good days. I have days when the pain is not as intense as others, and I always have to remember to live those days to the fullest. It's another thing that I learned when I was in my personal black hole. I didn't leave my bed much for a few years, and you know what? I hurt anyway. Staying in bed didn't really make the pain any better. It just left me angry and depressed, with no life. So now, on my "not so bad" days, I try to do some things that I enjoy. At least then I've had some good times to go with my crappy rainy days.

So maybe the point is to live life as much as you can. There will always be bad days, but you have to make the good days in between. The good days don't just come to me, I have to go out and create them when I'm given a day that is "not so lousy" on the pain scale.

As for the terrible pain days, like when it's raining, I just do the best I can to not let the pain get out of control. Staying in control is key, and really tough sometimes. There are times when the pain gets on top of me and I can't even catch my breath. All I can think is "God, just give me an hour off to get it back together." But I don't ever get that hour off, or any time off, the pain is constant, there is nowhere to go to get away from it. So I hang on and wait for a better day. It will come.

Friday, April 17, 2009

Websites for RSD

Oh yes, for those of you who don't know what RSD is, and if you don't have it, why would you know about it, here are 2 pretty decent websites about it. Or you can just google RSD or Systemic RSD and you'll learn more than you need to know.

I hurt today

I'm in a lot of pain today. Why start with that? Because it's what I say every day. I have a degenerative nerve disorder that causes intense, unremitting pain. I've had it for 16 years, and have started every day with the same "I hurt today." I've tried a lot, I've seen a lot, I've learned a lot. My hope, with this blog, is that perhaps I can touch someone else who has been in a similar place on this journey, and help them get through a difficult spot. Perhaps some of you can help me as well. I think each of us who suffer chronic pain feels alone. Most of the people who we deal with on a daily basis really can't understand what it's like to hurt all the time. Our family and friends love us dearly, but honestly, they can't understand the fear, the frustration, the crisis of faith, and all of the other demoralizing things that go with chronic pain. Not that they don't want to understand, and want desperately to take the pain away, but they can't take away the pain, and they don't know where to go from there. Sometimes we don't even know what it is that we need. But, we, as a group, understand it best, and perhaps can help each other. We've all learned tricks to cope with the pain, ways to deal with the system, programs out there to help us; I think we can share these ideas with each other. So, let me start at the beginning and tell you my story.

I went on the best ski trip of my life during Christmas of 1991. I skied Christmas day at Purgatory in Durango, Colorado. There was about 2 feet of fresh powder, and not another soul on the slopes. My brother-in-law and I were in heaven - it was wonderful.

Shortly after this, I noticed a lump on the back of my left knee. I went to my Primary Care Physician who said that it was a Baker's cyst, and he sent me to a surgeon from my HMO list. I would learn later that you should never operate on a Baker's cyst. When they are inflamed and causing pain, you get a steroidal anti-inflammatory injection, and just manage the flare-ups. Well, I was young, I didn't know, and I trusted the man with the professional-looking white jacket and lots of degrees and certificates on his wall. Of course, in hindsight, I know that I should have done some research, both on Baker's cysts, and on the doctors on my HMO list, but it didn't even occur to me at the time. Reminds me of the old joke: What do you call the guy who finishes last in his class at med school? Answer: Doctor. And I had an appointment with him.

The surgeon made a real mess. I don't know if he was just incompetent or if perhaps he was on something, but he really did a number on my knee. He cut through the joint and leaked the fluids, he cut the hamstring tendon, then put it back in the wrong place, he cut out half of the hamstring muscle, and, to beat all, he did not remove the cyst - he popped it and left pieces of it up and down the length of the hamstring tendon. Anyway, it took 3 operations to fix what he did, the second of which caused a degenerative nerve disorder called Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS), long names for a really painful disorder. The nerves in my leg responded to the injury by sending out pain, swelling, and other signals, and those signals never turned off. Essentially, my body still thinks there is a terrible injury on my leg, so it continues to send pain signals. Since I have had the disorder so long, it has progressed, and is now what's called systemic. It means that the signals are no longer just in the peripheral nerves, it has gone to my central nervous system: the spine and brain. There is no cure for RSD, and there really is not an affective treatment. It's all a matter of trying to treat the symptoms: manage the swelling and the pain. But there really are no good medications for nerve pain, so I continue to be in excruciating, burning-type pain even when I am sleepy and groggy from so much pain medication.

Of course, the first question when people hear my story is "did you sue?" Sadly, I picked my lawyer from the same list as my surgeon, and he was either incompetant or "on the take with the doctor," because he filed my papers 1 day past the statute of limitations, and I was out of luck again. My fear has always been that the doctor was free to do this to someone else, and I live the rest of my life in horrendous pain. He doesn't even know what he's done to me.

But I'm not doing this blog for it to become a place of pity. I certainly have my bad days when I want someone to agree with me that this sucks and it's totally unfair; when I want a loved one to hold me when I cry; when I want someone to say "poor baby"; but I have many, many more times when I move forward in my life and do all of the things that I can do, and don't dwell on the things that I can no longer do.

I am going to try to post every day, but as anyone with chronic pain knows, we have our bad days, so there will be skipped days. Some potential topics are
  • The system - how it demoralizes and stigmatizes, and doesn't even offer much help
  • What it must be like for our loved ones to watch us hurt and not be able to help
  • Tips for dealing with the pain
  • Tips for dealing with the system - what assistance there is, Social Security Disability, etc.
  • The importance of having hobbies - find things you enjoy doing, and do them
  • Focus on moving forward, not on looking back at all that you lost, and all that you'll never be able to do
  • Wheelchairs, walkers, and other assistive devices that we hate but need. I'll discuss my own love/hate relationship with my walker and my wheelchair.
  • How to deal with stares and questions from people in public
  • How we see ourselves vs. how others see us in terms of wheelchairs, scars, differences
  • Finding new ways to do things - you can't reach the top 2 shelves in the supermarket from a wheelchair
  • "When life hands you lemons, make lemonade" and other unhelpful and really rather silly things people say when they don't know what else to say
  • The challenges inherent in being disabled
  • You can't quantify pain. Your pain isn't better or worse than mine - it's yours and it's real.
  • Predicting the weather, and how weather changes affect us
  • The importance of having something to care for - for me it's having a pet.
  • and much, much more
I'm hoping other people living with pain, or living with a loved one in pain, will write with other topics to discuss. I'm not a doctor, I have no expertise in any area, but I've been there. I dug myself a really deep dark pit of depression, and spent about 3 years at the bottom of it, unable to even see the top. Every time I thought I saw a light at the end of the tunnel, it turned out to be a train, and back I'd go to the bottom of my pit. It took me a long time to claw my way back out, and I learned a lot in the process. I learned that I can keep crying about all that I lost, and all the things I'll never be able to do, or I can look forward, find new things that I can do, and enjoy life a heck of a lot more. I've learned that I can feel sorry for myself about all of the hobbies that I loved so much that I can never do again (like skiing - I really miss skiing), or I can find new hobbies that I really enjoy. I can never go out of the house because it hurts and I hate the way I look in a wheelchair, or I can go out and have some fun anyway. Yes, I'll be in a lot of pain later, but I will hurt later no matter what I do. I can lay in bed all day and I'll still be in mind-blowing pain, so why lay in bed all day? I can feel funny when kids (and adults) point and stare at my wheelchair or my big ugly scar, or I can answer their questions openly and honestly, and maybe next time they see someone who looks different, it won't startle them so much. I can sit at home and fight my way through the pain and the system, "reinventing the wheel" every time a new challenge comes up, or I can start this discussion and hope that others join in and we can help each other. I can feel alone, or I can reach out, realizing that we all have our stories and our pain. If we voice them and share them, perhaps they aren't as painful. We'll see.