The Biology of Blame

One of the biggest struggle in ongoing illness is the constant apologizing that you're forced into. I missed 'work' this morning because I'm feeling so exhausted and generally 'ill' (that runny nose, cloudy head and sore throat feeling most people would call a cold) that permeates every cell of my body. I could sleep for a thousand years, if only I could fall asleep. The body is tired, ill and exhausted while the brain is bouncing around, jutting off corners and keeping me awake.

Illness removes the cycle of normality from your life. And unless you hermit yourself away in a small oceanside cottage, you have to cycle your normality in with the rest of the world. And it's difficult. Because the rest of the world is so caught up in maintaining that cycle themselves they can't make many entrances and exits for your wonky illness cycle of normality.

I spend the majority of my day apologizing.

I'm sorry, I couldn't hear that; I'm losing my hearing. Could you repeat that?

I'm sorry I missed that deadline. I was completely overwhelmed with life and pain killers.

I'm sorry I'm late. I couldn't walk too fast this morning and the hills were a problem.

But there are parts of life that you can't continue to apologize for because it becomes too painful. Denial also prohibits some of the apologizing because it is so painful to admit.

I'm sorry you were late for work this morning because of my arthritis. I'm sorry she was late, that hill is killing me.

I'm sorry I couldn't come in today. My child is more important than your organisation and I need to conserve energy.

I'm sorry we don't have much money, even though you work your butt off for our family. My health insurance is so important and so very, very expensive.

I'm sorry we can't buy that baby. Mama needs the money to pay for pain killers that aren't subisidized.

I'm sorry we can't go play this afternoon. Mama hurts and the pain is so overwhelming I am wanting to run away.

No, it's not you sweetie. Mama's just tired and grumpy today. I'm sorry for hurting your feelings.

I'm sorry I'm not earning an income to pay for all my costs -- it's impossible to find someone to take me on paid staff due to my illness and shortcomings.

It takes a lot out of a patient to even admit these feelings, let alone name them, speak them, address them. But we do. And it's hard and painful and emotionally devestating.

People react very differently to these apologies. Some people brush them off -- oh you don't need to do that! they grump.

But I DO need to make this apology. This is my reality. This is the consequence of my illness. And I WANT to and NEED to make you and I aware of this. This is my cycle of normality trying to engage in your cycle of normality. Let me do this, please!

Other people stop you from even speaking, cutting you off with a wave of the hand or other gesture.

How dare you? I'm a human being and just because you don't understand and respect what I'm saying doesn't mean you get to stop me from speaking. I'm sorry that you're so single minded you don't respect my feelings, or are feeling guilty that you're well and I am not. I'm sorry my illness is making you uncomfortable, but I am also living on this planet and have a right to do so.

And occasionally, you'll get the person who wants to remind you of the blame of illness.

You know, they start. I know this woman who read this book about being positive and how positive thinking brought her money and good health.

Some call it The Secret, some have other names for it. It's this belief that by thinking positive, they will somehow exert control over their lives. And truly, it doesn't bother me. If you think money is coming to you, all the best.

You want to control all the red lights in town, have at it!

But it bothers me when you start exerting blame onto me for my illness.

If you were more positive, you would feel better. Your cells wouldn't be ill. Your DNA would change and you could get better.

Having a genetic disease, that last bit always gets under my skin. My DNA, by default, is different from yours. But my DNA, as proved by genetic testing, has a malfunction that results in illness.

So, by using the positive thinking hypothesis, I could have somehow altered my DNA to become normal by being happy? I somehow altered my DNA to the malfunction state because I chose to? Because I did something wrong?

My daughter, a young child trying to live her life well with illness, is somehow to blame for malfunctioning DNA? Did I curse her with this during pregnancy because I was ill and struggling? I fail to understand the principle.

I get that positive people have an easier time with illness because they can push their way through. But they're still pushing. And they're still getting ill. Some of the most prominent faces of illness are these very people. They ARE positive, happy people who ARE ill.

And some of them die from the illness.

Happy, positive people make for interesting articles. That's why these people are fronting organisations. Because they're nice to reporters. Reporters would have a field day with Oscar the Grouch turning up and berating the reporter.

But it doesn't mean that Oscar the Grouch became ill BECAUSE he is a trash-can living grump. He got ill because he got ill. Illness, like happiness, happens.

For every cancer sufferer who faces ideas of pessimism and a life of hardship, there is a cancer sufferer who spent a life full of optimism and peace. Cancer happens. Regardless of whether you spent your teens and twenties and thirties seeing the glass as half-full or half-empty.

To suggest otherwise is cruel.

Am I sick because I came from a family of dysfunction and didn't have the social skills to enter society as an optimist? Am I sick because I spent a period of time facing depression as a result of sexual abuse? Am I sick because I didn't embrace my illness with positivity and optimism?

No. I'm sick because I'm sick. I was sick from the moment I was conceived and I will be sick until the day I day. It's in my DNA.

Certainly, the way in which one handles illness certainly begets the quality of life one will have while ill. And that's something I have spent the past 12 months learning, getting counseling for and bearing change into our family. It is the message I am teaching my ill daughter.

But I will not stand for someone telling her that she is ill because she has somehow done something to deserve it.

I did nothing to deserve this illness. The illness is cruel enough; living life with this illness is hard enough without some jackass telling me that if ONLY I had... And that my life would become easier if ONLY I would...

To suggest that I can re-alter my DNA and that my illness will go away if I simply retrain my thoughts is informercial fodder.

One such book proclaims: "It shows that genes and DNA do not control our biology; that instead DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts...a major breakthrough showing that our bodies can be changed as we retrain our thinking."

I agree to an extent that we do control our destiny with what we do and how we think. When I lived with uncontrolled pain, I hated the world. It was a dark grey blob of existence that no one needed. Death was welcomed.

But once I re-emerged into the world, I saw how amazing and fun and truly wonderful life could be. So yes, to an extent, my positive thinking changed my world. But those positive thoughts only came once my biology was controlled.

I still struggle with the pain. When the pain is so cruel I want to rip joints from my flesh with a kitchen knife, I hate everything. I just want the pain to stop. It's hard, in that moment, to see the beauty in nature, in people, in just breathing.

But days spent with friends and being and feeling happy reminds me that those bleak moments are fewer and fewer.

When an illness is uncontrolled and the patient is living in a hell, being told that they would be better if they just thought positive is cruel. That patient IS thinking positive. They are repeating that the pain is going to go away and it's not going to come back. They are repeating, mantra style, that the pain will be gone in 5 minutes. Those 5 minutes may pass, but they keep bleating on that the pain WILL stop and they WILL be ok.

Fear, desperate fear of the pain not stopping is keeping them pushing forward in their lives; but they are positive in those moments of desperation, willing the pain away. Some depression patients cite this as to how they chose not to attempt suicide. They kept repeating that the feelings would pass. That is optimism.

That IS positive thinking.

No, it's not the 'My body is beautiful and whole' business some people want you to keep practicing, but it IS positive. And in that moment of desperation, of struggling and drowning in pain, it's all you can muster. But it IS positive. And you are NOT doing anything but surviving and how dare anyone accuse you of creating or maintaining your illness by virtue of thought.

There is a place in illness and recovery for positive thinking, for positive euphemisms, for sunshine and rainbows and unicorns and fluffy bunnies. But, as someone who is ill, I am spending my life desperately trying to make my norm fit yours, and as a result, constantly apologizing for my shortfalls.

And for you to suggest that I could, simply and without any drugs, money spent or time spent with my doctor, repel my illness simply by reconstructing my thoughts, is just plain ignorant and heartless.

I don't suggest to you, in polite company or not, that you would fit your trousers better if you didn't drink all that beer, so why can you suggest that I am to blame for my illness simply because I don't spend my time running through fields of daisies in the company of bunnies, unicorns and anime characters?

What is it about uncontrolled and chronic illness that allows people to insert blame into our lives? People long gave up blaming birth defects on the actions of pregnant mothers, so why is it still acceptable to assert blame on survivors of illness?

And how useful is it to do so?

I feel enough blame and sadness for the struggles of my family. I don't need more.

As anyone with ongoing illness, we are probably one of the most blindly optimistic people you will meet. Perhaps not publically, perhaps not triumphantly, but we are. How many of you have tried products off the shelf with hope it will help? How many of you have met with new doctors, often at a high cost to yourself, with hope he will change your life? How many of you have read books, repeated mantras, burnt candles, rubbed oils and prayed and cried to G-d for help?

I'd say 9 out 10 have gambled with herbs, diet alterations, crystals, oils, people, in a blind hope and faith that it would help.

How is that not positive thinking? How is HOPE not seen as the most active and attractive form of positivity? Isn't hope the eternal flame that keeps humans plodding along?

How can you, blind to my life and all I've been through and keep subscribing to and trying, suggest that I am to blame for my illness?

Maybe it's because of facing the fear and the sorrow and the pain in my life that I have the capacity to feel hopeful. Maybe because I AM honest and feel sadness in my life that I CAN see the joy. Maybe trying to cover it all up with a bandaid of fake positivty might do more harm?

If you want to be supportive and helpful; if you want to love me and embrace my life, if you want to introduce positivity and mediation and other forms of your 'positive thinking' then allow me to explain whether there is time, energy and need for that in my life.

You might be surprised with how positive I already am.



You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. ~Eleanor Roosevelt

What Hurts The Most?

"What hurts the most yields the greatest strength" reads a t-shirt available at Cafepress.com if you search for Neuropathy.

I think it's a fabulous opened ended statement.

Are they talking physical pain? Emotional pain and regret? Psychological pain? Or a cultural stiffness that eventually endures pain?




For me, what hurts the most is my body.

In July and August 2008 we moved from Blenheim and a warm, modern home to a leaky apartment and eventually to the home we live in now. It's cold and draughty. It has no heat, except a couple oil fin heaters we have bought. The wind rips through. It took months to get rid of the dampness and cold. It was a particularly cruel Wellington winter.

And I had yet to be diagnosed with a rare disease. People still thought I was an attention seeking dramatic depressive.

I just hurt.

One morning I woke up so sore I could hardly breathe. As the day wore on, I began to think, if this is it. If this is all I will ever have to live for, I don't want to live. And it was scary. It was a tormenting thought to have. I had an almost 3 year old -- why wasn't she enough to live for?

Wasn't life itself worth living for? It was a horrible internal battle. My desire to live was strong but the pain itself was so horrid that death seemed like a warm embrace, a deserved win.

I went to my GP after a 2 day internal battle and told him. If this is all I have to live for, I don't want to live. This was when we first looked into Cox-2 Inhibitors. He had some Celebrex hanging around and gave me 7 boxes that had expired by a few months. (Not that they *really* ever expire, he said.) I was so grateful. The drug can be terribly expensive. We raised my steroid and I took some oxynorm and tramadol together. It wasn't what I needed to beat the pain monster but at least I didn't want to die anymore.

He also referred me to the mental health service. I think he realized that it wasn't going to touch the pain and I might become suicidal again. I met with them and my intake was exactly as you'd imagine. I've never been a risk to anyone else, just myself, but only when the pain is so extreme death seems welcome.

They really did seem to get how bad the pain was. They encouraged me to push for a pain clinic assessment. 'Someone must be able to do something for you!' they quipped. (The short answer is no.)

I think it was the steroid more than anything that helped. And it did get better, as it does.

The pain for me cycles in flares. Some days I hardly wonder what the fuss is about and then there are days where simple muscle flexes make me want to howl with pain and the electric shocks are awful.

Today, for example, my fingers hurt. My hands hurt, my arms up to the elbow hurts. My legs under the knee hurts. Moving them is agony. Cutting, writing, brushing my hair or teeth is totally out of the question. Carrying dishes is a disaster because it can all change in a split second. Boom, my hand will open, and crash! The dish that was held so automatically and expertly goes crashing to the ground.

I will never use good dishes as daily dishes for that very reason. I have personally destroyed an entire dinner set. Some of my favourite mugs have been lost to this.

My legs feel as though they are bolted to the ground. Picking them up feels almost like marching and I am directed to memories of elephants marching, trunk holding tail. My mental image is of my heavy elephant leg lifting up, pushing down, lifting up, pushing down. It's almost as though I must tell myself how to walk to get these beasts to work.

Stairs are a laughing matter. There's no way these legs will lift high enough to clear a step and yet, you must. Life doesn't stop because you can't climb the stairs. Especially in a world of 2-story houses built long before anyone recognized arthritis.

I will often be sitting, waiting for pain killers to kick in, when I feel the electric shocks hit my spine or my arms. The burning in my legs is agonizing at times. I used to be ashamed to cry in pain. Most of the time I'm alone when it happens so I don't mind going with it. But when other people are around I try not to.

I try to hide it as much as I can, but there are some days when it just hurts so much I hate life and I hate everything and I just want to stop hurting. My daughter is getting better at understanding it's not her, or anything really, it's just that mummy hurts and mummy needs to let it out. But it used to really upset her.

So I would find myself stuck on the floor, in agony, crying with an equally distressed toddler crying too.



Nothing ever really helps. Heat, cold, pain killers. I find that there will be days of warning -- increasingly sore muscles. Sore joints and fatigue. Headaches. Trouble sleeping and eventually it will hit.

It's often when I have a lot going on and so I will email people: "Fingers hurt. reply later, ok?" whether or not ok is a satisfactory answer for them. Sometimes I can push through and my fingers will ache and swell and once I nearly burnt the house down trying to prepare meals in this state.

I turned the wrong element on and went to sit down, exhausted from chopping and feeling fatigued. We had moved the toaster to the stove so it was easier for me to operate and boom! Up in flames went the toaster. If I had fallen asleep or been unable to move to extinguish the fire, we would have suffered far more damage. Thankfully the only damage was smoke induced and a burnt element and ruined toaster.

People often suggest we get home help during these times. The problem is many folded. For one, you never know when it will occur. You can't afford that sort of help anyways ($26 + an hour) and people expect you just to 'harden up' and get on with it. And I've tried and I do. But most often, it's hard, I hurt and it made me very, very angry on the inside.

When I explained the anger to the psych consult, they suggested I do some anger management courses. Oh, how I laughed. I don't have an anger problem I told them. I most certainly did. I also had a problem with accepting this was my life. I was still clinging stubbornly to the belief that I was going to get better.

It wasn't until this year when the gene tests returned that I realized I am *never* 'going to get better'. You can't change who are at a genetic level. All I can pray for is relief from the pain and the drug Anakinra to work.

I think that helped immensely. As did the anger management classes. I eventually went to them, in March of 2010 instead of Sept 2009. They taught me that I didn't have the social upbringing to deal with the emotions I was feeling.

It helps to write about the pain. Constant pain really does your head in. People often comment: G-d I can't handle it when I get a headache! I can't imagine weeks of this pain!

And that's how it is. The pain will rise and fall in cycles, it will cancel plans, create chaos and hassles. You have to make excuses and find alternatives. People won't understand or if they do, they are so kind and wonderful you wish all people were like them. Someone will bitch at you and someone will bring you a casserole. You're constantly challenged by the pain -- your own reactions, your ability to self-care or self-hate.

Life goes on and doesn't stop. The pain will eventually go away. You're left exhausted and hurt. Once the pain is gone, it takes days to rebuild from the exhaustion and flush out all the shitty drugs you've had to pump yourself full of.

When people recover from an illness with antibiotics you often hear people say -- oh, it takes it out of you. Takes weeks to get over those terrible antibiotics. But you never hear, oh, that awful oxynorm. Takes weeks to get those drugs out of your system! Insert with tramadol, morphine, meloxicam.

I recently overheard a discussion in which two people were discussing a third party using a lot of paracetemol. And how taking lots of pain killers was a blight on society. I had to laugh. Paracetemol?! Mwah ha ha. How I wish I was one of those people who never needed anything and considered it a last resort.

I think I've actually got an incredibly high pain tolerance. It's how I get on with life. I shop. I cook. I mend and sew. I create and paint and play Barbies. I parent very well. I've done charity work.

I hurt but I carry on.

I was told the other day that you'd 'never know' anything was up with me. Sigh, I think on the inside. I wish I went purple. Or had stripes. Or big fins. Even a big fish head. I responded that I walk slower than most people. And take time with things because I have to think very slowly to make sure I'm not making social mistakes.

I was grateful that these people asked about my illness and I got to tell them more. I was grateful for their empathy and for their kind words about how well I carry myself.

I guess that's another way the illness hurts.

If I want to lie down on the floor and sob and openly express my emotions about it all, am I not carrying myself very well? Am I doing a disservice to myself or others with chronic illness by not carrying myself well?

My daughter seems to struggle with it at the moment. She wants me to be a willing participant in her play and I am finding it hard to explain to hurt what it means when I say 'Mummy hurts'. I've tried to explain that I only have certain amounts of energy. She hasn't quite grasped that mental energy is different to physical energy and I have limited amounts of both.

I feel immense dimensions of guilt.

For not bringing in an income. For costing my family money. For having to bail out of social events. People don't get that. They think you're a flake or just finding any old excuse to not go out.

That causes guilt too. If they'd just ask -- are you avoiding me or do you really hurt they'd get so much more knowledge and no one would get hurt feelings.

People are biased by illness. They either find you a bludger or have bad memories of someone else with illness. Maybe illness killed off someone they loved desperately and you remind them of that pain. Not many people choose to let you tell your own story.

That hurts too.

It hurts to hurt.

I remember once a nurse told me to pray for pain relief. "It can't hurt" she said, not knowing the pun. Oh how I wanted to point it out but didn't. I didn't want to appear sacrilegious.

”The greatest evil is physical pain.” – St. Augustine

Oddly enough, nothing has taken away the pain. Not even prayer. As much as I had hoped a good word with the big man upstairs was going to help, I wasn't really surprised.

Today, my arms hurt. My fingers ache. My legs burn. I trip over my heavy elephant feet. I am tired and plagued with exhaustion. But I have promised a trip to the beach and a plate of hot chips. I have to pack to catch a flight tomorrow and it's overwhelming.

This is when I actually use prayer. Lord, I say, please grant me the patience and the endurance to get through today. To hold my tongue and to love my daughter unconditionally.

It's one of those days when I say: Everything hurts.

It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. -- Julius Caesar

Writing is my Food

I've been reading some posts on a messageboard lately about 'fatties' and how people who are overweight need to stop feeding their gobs and just exercise. It makes me giggle a bit, because those types of people have never struggled with much. Either by design or pure stupidity.

We all struggle with something. Some people feel too tall; some too fat. Some are poor and some just have really crappy luck.

It did, however, inspire me to question whether I had it in me to get back on the stepper and do some weight training exercises. And the answer is that I do have it in me. The power, the desire, the insanity to challenge my adrenal glands.

My gallbladder is distinctively more sore and angry than before the exercise so I know that today's 750 steps is probably on the high side for someone with biliary colic.

I've been meaning to write about what it feels like to pass on that really crappy luck but my daughter isn't doing too well. She's had a fever for a few days, very sore knees and she's tired, sore and emotionally exhausted. We're off to the GP and I'm going to ask for some blood tests.

I had hoped we'd have 15 years before we saw more aggressive signs. But we're not getting that sort of time.

I'm supposed to be writing through these feelings but it's hard. Isn't it easier to just stuff it down and have another cup of coffee and bake some cupcakes? Some pretty pink cupcakes?

Tomorrow. Today is a challenge enough.