Friday, November 12, 2010

What Hurts The Most?

"What hurts the most yields the greatest strength" reads a t-shirt available at 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