Living with Chronic Illness, Muscular Dystrophy, Periodic Paralysis, Celiac Disease, Migraine, Heart Disease, Diabetes

Feeling Suicidal?

If you have ever felt suicidal (or just wanted all the pain to end) and searched for help on the Internet, you know that most of it is CRAP! My impression is that most of it is written by preachy, whining, religious zealots who want to buy their way into heaven with your soul, or it is namby-pamby do-gooder crapola, or it must have been written by some heartless, "never felt a real emotion in my life" therapists. However, I recently found a page at Healthy Place that offers real world, practical, effective, do-able suicide prevention advice. They even have an audio show on the topic. So, if you are feeling beyond blue, follow the link below. I believe following their suggestions will help you start feeling less pain starting today!

Click here to visit Healthy Place "Feeling Suicidal?" page.

Better Off Dead?

I was talking to a friend of mine yesterday. She said, "I'm sorry I missed our appointment last Friday. I friend of mine had a brain embolism, and I completely forgot about you." I told my friend that was fine and completely understandable. When I asked if her other friend was okay, she said, "No. She died. But it was probably for the best--after all, she was having a pretty hard time with rheumatoid arthritis."

I was stunned.

Maybe someone would be better off completely dead rather than brain dead from a stroke, or better off dead than completely paralyzed from spinal injury, but better off dead than living with arthritis? Don't get me wrong, I understand that arthritis can be extremely painful. I knew a man years ago who was only in his twenties and had already had both hips replaced due to arthritis. That's certainly not good, but would he have been better off dead rather than living with a chronic illness?

Where am I on that scale?

I live with three chronic illnesses. I can't eat what I want because most grains are literally poison to me. I never know when I'll get a horrible migraine. Sometimes, just a tiny bit too much activity is enough to leave me weak (or paralyzed), sore, cranky and bitter for days. If someone is better off dead with one chronic illness (rheumatoid arthritis), I guess I'm better of dead, burned to ash, ashes ground to dust and dust sprinkled over the ocean from 20,000 feet. Since I live with three chronic illnesses, maybe I shouldn't exist at all.

My God!

Is it just ignorance that makes people think like that? Was this poor lady with the embolism so much worse off than most people with arthritis? Was she suicidal? Did SHE want to die, or was it just a blessing for some of the other people around her? I have days when I wish I was dead, but only because I wish I could live a different life--one without so much pain; a life that wasn't so thick, one where I could accomplish more, a life with more energy to enjoy my family. But as soon as I get some rest, time and medicine, I realize I am NOT better off dead ...

... I'm glad I'm alive!

“Rodney’s Don’t Blame the Deer” Theory of Guilt

It is very easy to feel guilty about having a chronic illness. Something bad has happened and someone must be responsible! That’s the way a lot of people think. Bad things can’t just happen. The world can’t be a random place. No one wants to think their life is decided by drawing lots. “Oops, you got the short straw so you get the arthritis gene this time.” It is frightening to even imagine a world that works that way.

When parents divorce, even good kids blame themselves because, “I love Mommy and Daddy. I need Mommy and Daddy. It can’t be their fault. It must be my fault.” But it isn’t the kid’s fault, is it? Sometimes mommies and daddies just can’t get along. Sometimes mommies and daddies don’t keep their promises. Sometimes bad things really do just happen to good people. I had a friend in high school who was a hunter. As he was deer hunting half-way up a steep slope at the base of a cliff, he heard a funny noise, looked up and saw a deer crash into the forest floor not twenty yards from where he was standing. The deer hand simply lost his footing, slipped and fell off the cliff to his death. It happens. We don’t need to Blame the Deer. It was an accident. By the same reasoning, we don’t need to feel guilty for an accident of fate that happens to us. Sometimes things happen that really are totally beyond our control.

Firearms instructors teach police officers and armed citizens not to say, “I’m sorry,” because it implies an honest shooter did something wrong. For example, an officer who says, “I’m sorry I shot that bank robber” is, from a legalistic standpoint, admitting guilt. He is admitting he did something wrong. Opposing council will argue to a jury, “The officer said he was sorry. We say we are sorry when we do something wrong!” On the other hand, when most of us use the word “sorry,” we mean, “That’s horrible. I wish it never happened.” When we say we are sorry about our illness—meaning “I wish it never happened”—a little part of our brain still means, “I made a mistake.” Chronic illness is not a mistake. It’s just something bad that happened to us. Eventually, you may come to a place where you can even say that chronic illness is just something bad that happened—and leave off the whole “bad” part. Accepting the idea that bad things might just happen for no good reason is a grown up view of the world. I believe that once you get comfortable with a bit of uncertainty, you will find it is a realistic view that brings peace of mind.

What do you think? Can you handle living in a world where bad things sometimes just happen? Use the comment tool below to share your answer.

 

Chronic Illness Makes Me Feel Fragile

Being diagnosed with any chronic illness can be a real shock. Not long after I was diagnosed with Periodic Paralysis, I began having dreams that I was having attacks in public places. Once I dreamed I went into an attack in the rest room at a rest stop in Virginia. Another time, I dreamed bad guys were chasing me, and I got weaker and weaker then suddenly found myself riding in a super fast power wheelchair. Another time, I dreamed I was explaining my condition to a college professor and his entire class. Much as I love a good prophetic dream, I believe these dreams were just my subconscious mind coming to grips with my new self image. Until my diagnosis, I never, ever had Periodic Paralysis in my dreamed. For me, my diagnosis didn't exactly shatter my self image, but it did give it a good smack upside the head!

For some people, getting a diagnosis really feels like the death of their old self. It feels like the good Old Self is being replaced by some bad, defective, inferior New Self. Here I was, having almost-nightmares about my condition, and I had been sick for years, and been struggling for a diagnosis for almost a decade! If your disease came on very quickly, and your diagnosis was prompt, I think the transition can be even more jarring. I'm sure some people must feel like they can never trust life again. I believe some people feel like they can never trust who they are again. Why not? Because if all it takes to revolutionize who-they-are-as-a-person is a word or two from some doctor, then what are we?

Here's the thing, we've never been very solid. As human beings, we are easily damaged by everything from lightning, to sun light, to chemicals in the air or bacteria in the water. From hail storms, to snow squalls, rocks, rock music and car crashes. The idea that any of us truly has a stable personality or physical body is mistaken. Don't believe me? How much have your beliefs about the world changed since you were a teenager? I'll bet they’ve changed a lot. After high school, did you notice that some of the people you felt were stuck-up and aloof seemed to grow up and were suddenly much nicer to you? I know I've changed since then. Do you look the same as you did back in the day? I know I'm a little taller and a lot heavier! Even without chronic illness, we change. It's the natural course of events. We all wish it wasn't that way, but it is.

I'm not saying being diagnosed isn't hard, it can be heart wrenching and sometimes very sad for everyone involved; I just believe that clinging too tightly to what we used to be can make us blind to what we might become. I wouldn't wish chronic illness on anyone, but it can make us more compassionate and more understanding. Our weakness can become a strength and bring us closer to our loved ones and to others who face pain and suffering. It can make us more compassionate, if we let it.

We are all fragile. Those of us living with chronic illness even more so. This process of diagnosis and mourning our old life means we have a chance to open our eyes and see what kind of person we will become. I still have days when I'm a raging tyrannosaurus rex, but it's not every day. We've always been fragile. Chronic illness has just forced us to face our mortality much sooner and more vividly than most other people.

Can the Chronically Ill Ever Trust Life Again?

Many people with severe migraines can’t ever drink red wine, eat cheese or (gasp) chocolate, or risk a headache so vile they might throw-up from the pain! People with a shell fish, peanut or corn allergy can’t eat so much as a crump of these foods, or they may very well die! Those are severe limits. Unfair limits. That is not how the world is supposed to work, damn it! How can people living with such seemingly capricious risks ever trust life again? How can someone with an invisible but crippling illness like Multiple Sclerosis or Chronic Fatigue Syndrome ever trust life again?

I remember climbing Mount Desert on the coast of Maine. This was before I showed many symptoms, and I was with a youth group climbing the nearly vertical path up to the summit. As I came around a curve, I saw the waves crashing on the beach below me, heard the gulls crying, and felt the vastness of the sky above me and the distant ocean below. I became dizzy and grabbed a clump of tall grass to steady myself. Then I had to wonder: How could such a tall bundle of grass grow way up here? There was barely any earth between the slabs of solid granite. The wind was nearly constant, and I knew the winters must be bitter cold. How could this tuft of grass survive? Oh, I was very glad it did, or that day on  Mount Desert might have been my last day on Earth, but I was struck by the power of life to hang on. Life is resilient. Sturdy. Determined.

As human beings, we can face horrible events: loss, illness, cancer, disease, starvation; and terrible conditions of abuse, neglect, heat, cold, drug side effects and more. We survive. If you are around to read this passage, you can take strength in knowing that you are a survivor, from a long line of survivors. If you are of Celtic or European stock, your ancestors lived through the Black Death: the single plague that killed 75 million people world wide and almost half Europe's population. If your family came out of African, know that they survived horrible droughts, giant bugs, animal attacks, death ships and more. Those from Asia also lived through the Black Death (that's where it started), plus thousands of years of famine, drought, monsoons, marauding warriors and callous rulers. You are of that stock, and you are stronger than you think. You can rest in the comfort that life is strong, and the blood of life runs strong in your veins.

Please forgive me to spouting an old chestnut, but here goes: Everyone dies. Not everyone lives. Maybe checking your blood sugar and giving yourself shots every day isn’t what you had in mind for your retirement years. Maybe you don’t like it one bit that you have good days and bad days because of your Multiple Sclerosis. Maybe you hate having to use a walker and oxygen because of all those years smoking unfiltered cigarettes. Hey, I don’t blame you for being angry. I didn’t get a trip schedule before coming to this planet either. But we can still remember how to enjoy life. In some ways, we have more chances to enjoy life than some healthy people. Why? Our experience with chronic illness forces us to confront life on a direct level. It’s hard to hide from life when you’ve had a stroke and a heart attack on the same day! Live can be a bitch. Sometimes death is a charging jungle cat. Sometimes it is a howling wind. Just remember that we are survivors. We play in shark infested waters. We make paths on cliffs. We turn nightmares into horror films for fun. You can trust this: As long as the earth survives, the sun will rise and set every day. Every day a baby will be born and someone will die. No two days will ever be exactly the same. Nothing in this world is perfect, but many things are perfectly good just as they are. Life is strong, and life runs very strong in you! Trust that.

Why me? Why Do I Have to Suffer?

Why me? It is one of the most common mental/emotional traps that comes with fatigue and loneliness. Don’t let your mind dwell too long on the question, “Why did this have to happen to me?” or "Why do I have to have a chronic illness?" Sometimes bad things just happen.

Scientists say that long ago, the universe was formed in a huge explosion. Since we are literally living inside an explosion, it’s a wonder we aren’t all cinders! I call this Rodney’s Exploding Universe Theory of Chronic Illness. Our bodies, our minds aren’t perfect. So what? What did you expect living inside an exploding universe? The real question is, Why aren’t we ALL sick? We are all going to die eventually. That’s what exploding embers do: they burn for a little while, and then fade away into dust.

Cause and effect applies to people. Genes mutate, bodies change. Chemicals get out of balance, moods shift. Thoughts get mixed up and reasoning becomes muddled. We all have power to move and change our world, but our powers are not infinite. There is only so much we can do.

Try this experiment: Stand up, or sit up straight as you can, now spread your legs and reach out your arms, fingers wide. That’s as big as you are. No more. We are drops of water in the ocean, a bit of spray in a waterfall. There is not so very much to us after all. Why me? It is too big a question for our little minds. Maybe we are supposed to be sick. Maybe we just happened to be in the wrong line at the Get Your Genes Here sale. It happens. God knows why. Nobody said he had to tell us.

If you are religious, I recommend you stop using God as your co-pilot and let him fly the damned aeroplane! If you are not religious, but are still troubled by the why me issue, may I suggest you decide now to be an adult and accept the fact that sometimes cause and effect is just too complicated for us to figure out. We all think about this question, but please don’t waste too much time on it. There are better things you could be doing. Baking cookies comes to mind.

PS
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