Take My Hand

I think that a lot of people with chronic health issues have varying degrees of trouble asking for - and accepting - help.

For me, at least, it's not so much about pride or maintaining an illusion; I'm well aware of myself. I know that I am not a particularly strong woman, in any aspect of my life. I am often easily thrown down emotionally by one thing or another, I bitch when I'm uncomfortable, and I'm afraid a lot of the time. I don't hide my weaknesses - I don't have the strength or energy to waste on being anything but myself.

For me, asking for and accepting help are hard for reasons which developed a very long time ago.
Ever since I can remember, there have been people who reacted negatively when I asked for help I needed. So, I learned that asking was bad, something to be embarrassed about.
Often, when people did help me, it was with a lot of grumbling and resentment. So, I learned that, if people helped me, I was being a burden.
These people weren't strangers, either- often they were people who claimed to care about- or even love- me.

More than once, someone would start out insisting that they wanted to help, to be there- only to decide that the task they had taken upon themselves was too much for them. Inevitably, they distanced themselves.

So when I find someone who's willing to help me, and does so without complaint or impatience, it frankly leaves me stunned. It breaks my brain to have someone who sees me struggling and reaches out without reluctance, without me asking. Who treats me, the whole time, with kindness.
I find that I have no words for them to express why that means so much to me.

Even if I had the words at the time, I would struggle to express them, because I'm afraid that they'll be misunderstood, or make that person uncomfortable.

So, I'll take a shot at expressing them in writing.

Thank you. I will say that to you a million times, because I honestly don't feel that I can communicate it enough. I am so incredibly touched by your kindness, your patience, your willingness to help me, because it's something I am rather unfamiliar with. It means a lot, and counts for more than you realize.

Please know that my reluctance to let you help isn't because of you.

Please understand that apologizing for being an inconvenience is hardwired into me by now. So, too, is my embarrassment for needing assistance in the first place.

Please don't forget that when I say 'Thank you' over and over, it's because I can't think of what else to say, because this level of kindness, patience and compassion is alien to me. I don't know if I'll get used to it.

Please remember that it's almost a certainty that I will never expect your help.

But I will always be grateful for it, and happy that I have a friend like you.

A Deep Breath, and an (Unintentional) Test Fall

Last night, one of my housemates had some painting to do. He and his girlfriend cosplay, and, with a convention coming up this weekend, he was running out of time to finish up all the elements of his character.
He was using spray paint, and decided to do it outside, in the backyard. He'd hardly begun before it started to sprinkle.
Meanwhile, I felt the urge to take a walk. With a word of sympathy for his bad luck, I bundled up, pulled a hood over my hair, shoved my cell phone and inhaler in my pocket, and started off into the cold, rainy night.
Rain has never really bothered me. Sometimes I love it; I still find being out in it therapeutic at times, but since my fall, I had been afraid of it.
My need overcame my fear, though, so along I went, making steady enough progress through the neighborhood, sticking to the streets with the most lights on...
Eventually I ran out of those, though, and my leg was getting tired, so I retraced my steps back towards the house.
I got there, walked through the door, and was met with the strong smell of paint. It went into my lungs and I immediately knew that this wasn't a good plan, so I told him the paint was getting to me, and went back out.
I realized I had nowhere to go.
I didn't feel like walking again.
I didn't really feel like being alone.
There was nowhere dry to go.
Shrugging, I settled myself on the front steps, trying to pull my coat down so that I sat on it, instead of the wet concrete. It didn't work.
After a few minutes, my ass was numb, my pants were wet, and going inside and facing the paint fumes seemed a much better option than staying out.
This turned out to be a mistake.
I walked in and the fumes were much stronger. I started coughing, as they entered my lungs, threatening to choke me.
I made a beeline for my room, trying to hold my breath as I walked through the kitchen/dining area, where my roommate had been doing his thing. I almost made it, but right at the turn towards the backdoor and the tiny hallway that led to my room, a cough caused the breath to whoosh out of my body, which immediately tried to replace it...
Coughing so hard I thought I would retch, I jerked open the door to the backyard and barreled outside.
I didn't make it very far.
Earlier that day, the ramp which had been installed for my move home from the hospital had finally been dismantled. Finally, the brick 'deck' with stairs down to the actual patio and backyard were exposed.
It turned out that they were also incredibly slippery.
I made it about two steps before wiping out- going down in a spin, (with all my weight banging into my bad knee and leg) to lang solidly on my back, inches from the muddy grass.
Incredible pain shot through me, extreme protest by my body for putting it through this type of thing, but there was no 'wrongness' like the day I broke my leg. A small part of me relaxed at that, but she wasn't at the wheel, and the rest of me Was Not Happy.
"F---!" I shouted, then- "Goddamnit!"
I lay there, not moving, rain falling on me, cool drops hitting my face and neck, for a minute before two of my housemates appeared over me.
"Did you break the other one?" one of them said
"Shut up." I snapped, still biting back more expletives as my leg continued to yell at me.
I finally moved it, cursing as I did. I sat up, carefully. Still no huge amounts of pain from anywhere else, no feeling of wrongness.
With great difficulty, I stood, and made my way inside. My leg threatened to give out on me- even the feeling of the fabric of my pants on my knee hurt. A black mood settled over me. I was embarrassed. More than that, I was royally pissed off. I had had enough happen that day, and the fall, the subsequent consequences, were too much to deal with on top of it. I stomped (figuratively) around until I was finally able to make my bed, strip down, dropping my muddy, wet clothes in a pile on my floor, and curling under the blankets, without doing any of my skin routines.
It's the next day, and I regret that last decision. My skin is worse, of course. Especially around my eyes.
My leg is angry too, still- the muscles in the back of my knee are so tight and painful that I can't fully straighten it. I'm limping again, too.

There's at least one good thing about this though. The way that I fell, I really could have- and probably would have- broken another bone. Maybe more than one. It was very fortunate that I was able to take the impact with my knee, and rolled onto my back without my limbs flailing. Yes, I hurt. Yes, I'm limping. And that's incredibly annoying.
But I'm not broken again. And I very, very easily could have been.
So, there's something I should remember to be thankful for, at least.

A Low Place, and a Long Letter

Dear Reader,

I stumbled onto your account and I have to say that every post you make, I identify with. I know you have your own story, but I wanted to share mine. You don't have to read it, of course, and I'm really sorry if it's horribly inappropriate. I just figured that maybe you'd understand.

I've had moderate to severe eczema since I was a baby. I grew up with the constant itching, pain and discomfort, the sting and burning agony of certain lotions and topical treatments sinking into my skin, and the far too constant steroid tapers. In my late teens, I was put on immunosuppressants- Cyclosporine and then Cellcept. They worked for awhile, and I basked in my smooth, breakout free skin that didn't react to everything I touched. All too soon, they  stopped working, though, and my eczema returned with a vengeance. At times, it covered 80% of my body- once or twice it was so bad that I was almost hospitalized- my entire body was a mass of weeping, red raised skin, often infected.

I would end up going to the doctor, of course, or an urgent care center, and always the doctors put me on a long taper of prednisone, starting with a pretty high dose, gave me creams and sent me home, where I could only curl in a ball, wrapped in soft flannel in my bed, not moving, hoping that the itching, burning, bleeding would stop soon, that the steroids would start working so that I could function again.

The cycle continued. Medicated creams and ointments, something triggering a reaction, and, when I failed to get that breakout under control, ending up on prednisone. Once, a doctor at my local urgent care asked me when my last steroid taper was, and I realized that I'd already been on at least 6 rounds of it so far that year. He cautioned me that prednisone couldn't be used that much- that it had to be a last resort, because constant use did cause long term problems- like lower bone density, for example, and loss of skin elasticity (which had honestly already begun- I already had deep, ugly purple stretch marks on my upper arms, inner thighs and stomach). I'm ashamed to say that I didn't listen to him- or, at that moment, I did- but the next bad breakout caused his words to fade into the background. I had a life to live. Prednisone worked. Nothing else seemed to. My breakouts escalated so quickly that they needed treatment.
Besides, I'd been taking prednisone since I was a little girl. Not as often back then, but I certainly remembered the awful taste of those little white tablets, not to mention the crankiness, the occasional manic episodes, and, above all, the compulsion to eat- that little voice in my head telling me 'we want this' even though my body wasn't hungry. But those effects were the only ones doctors warned me about- no one had even hinted at long terms problems. So, I suppose I was still stuck in that mindset.

Of course prednisone wasn't bad for me. I'd been using it forever.

Then, this past October, I stepped off of a high curb with a locked knee and ended up with a compression fracture in the tibia of my right leg. Two, actually, as it turned out- one of each side, high up near the knee. I needed surgery, had two plates and several pins put into my leg. The nurses, doctors, techs, all asked me "So you fell, right? You fell and felt the pain." "No," I answered, over and over "I stepped off of the curb, felt a horrible pain, and then fell." The surgeon told me that I should have my primary care doctor order a bone density test.

I was in rehabilitation for a few weeks, and stuck in a wheelchair/using a walker for a few more.

Now, I can finally walk again without a cane.

And I finally got the test done.

It turns out, my bone density isn't normal. It's lower than it should be.

Now, I look at my body, at the deep purple stretch marks that seem to cover it, the heaviness that prednisone-fueled overeating has caused, the deep scars on my leg, and the eczema, that persistent eczema, all over, always there, even on my eyes so that they are stuck shut most mornings, even on the bottom of me feet so they itch in my shoes, even on the most private parts of me, and I hate what I see.

I think about my bones, I wonder what I can do, what could cause the next break? Will it be the simple stage falls I used to love to do? A fracture from the kickboxing I had planned to start? A snap while I'm running in my neighborhood, or if I trip while walking?

Eczema, the treatments, and the choices I've made have ravaged my body.

I didn't know any better, not really. But that doesn't matter, because there's no going back now.

I'm only twenty-six years old.

Where do I go from here? I try to think about that every day. Every day I look for an answer. But I can never find one. I get unsolicited advice all the time from people who mean well but have no idea what it's like. I get lots of looks, judgement, unkindness- people moving away from me as if I'm contagious. I feel like hiding my face- I never want to go anywhere, even though I hate being alone. Any thought of trying to date is instantly dismissed; who could be attracted to me, as I am?
I have no answers, myself. Only questions that I can't ask anyone in my life, because none of them know where I'm coming from.

What is there to do?

How does anyone get past this?

Why, no matter what I do, can't I get better?