Life With Polymyositis

Before Polymyositis - Sept 2012

Missed you too

Going back to Dad's house - June 2012

Technology keeps us connected (thx Xbox Kinect)

I made it to 39 - Sept 2012

Restaurant celebration together

Going to sports classes

After Christmas 2012

2013 Here we come!

Daily snack after breakfast

Winter in WI hurts

Bye Bye NoBloPoMo & #201

So I didn't make it every day this month. I missed a 15 day chunk before and during Thanksgiving week. I got sick and then overwhelmed with travel. But that's okay. I haven't posted this much in a long time and I enjoyed pushing myself.

I think this is indicative of my life now too. I may not be able to do everything I want to do, when I want to do it, but I can push myself to try and accept that I won't always get it all done in my time frame. I wrote exactly 5 words in NaNoWriMo. The start of an outline. There was no way this was a good time to add that to my plate. Maybe next year, or the year after. It's not a good idea to do this when you have final exams looming or week-long travel plans. Whoops.

What I did get out of NoBloPoMo is the urge to blog again. I only get less than 10 readers a day but that's okay. I think I found my way back to blogging my thoughts out again. Since I committed to blogging all of November, I started a few different posts that I'll finish later, and I found drafts from years previous that I want to update and post.

So even though I failed at blogging every day this month, I'm okay with 'losing' this time. It was an important lesson for me to at least try.

Oh, and this was post #201 for me - here anyway. I have many others tucked away in my archives from way back.

Dating With a Disability

For ages, even before I got sick, I said I wanted to start dating again. Sometimes I put my feelers out there just to check on what I might reel in. It's never pretty. I have an online dating profile up - for now. I deleted many replies there, texted a few back and forth, and never met any of them. Well, I planned to meet one but got blown off THREE times and had to put him in the deleted pile. I've been divorced for...almost 4.5 years now. I was still wrapped up in my own wishful world of the past. Then I got sick. Nothing was happening in my dating world after I got sick & I had to focus on getting better.

But they say that when you're not expecting it, it'll come. I think I may be open to it, but not actively looking for it. There is one potential. I just need to decide what I want to do with that potential, and if I'm ready. The major issue I'm having, outside of the lovely medication weight gain (seriously 40 lbs since May, wtf), is how or when to tell someone I'm disabled. I'm pretty sure seeing my handicap plates pull up on a date is going to give something away. If it's winter and snowing or icy, I have a cane to announce that I have some kind of issues.

So I obviously have to say something before a first date where it'll be obvious. I'd rather not spring it on someone as a surprise - like the guy who says he's 40 and shows up as 50. But I don't want to get into it on my dating profile and attract any weirdos either. So at what point between the first few emails or phone calls and a first date do I address my disability? I have mobility & strength issues. Not super obvious ones, but noticeable in certain situations. Something like a restaurant booth or bar stools are issues for me. If I sit too long I have issues standing up because my muscles stiffen.

Granted, if the person is someone I already know, then this isn't exactly an issue since they see me in person. But even then, they may not know what my issue is or how my polymyositis affects my daily activities. They may wonder about sex and not know how to ask if I'm willing and able! For the record, yes to both. I'm disabled, not dead for goodness sake. There might be mishaps or minor modifications but it's supposed to be fun, not some over-thought, be-careful-or-I-might-break-her situation.

So how to address awkward issues of my disability without going into my long, insane illness? I don't know. I'm going to have to think about it if I don't want to be bombarded by questions all about my journey on a date. I'm also hoping the issue of sex and my disability will weed out those too uncomfortable to talk maturely about sex. Something I despise. It's just sex. Really. If you can't talk about it like an adult, and not just "What's your fave position", we're so not having it.

I just wonder if I spring the disabled thing on them too soon will it freak someone out, or if I wait until we meet do I seem sneaky and untrustworthy? Thoughts?

Learning How to Live

Last year around this time I was an in-patient in rehab at the local hospital, my first of two rehab stays. I was relearning how to walk. I couldn't raise my arms to shoulder height. I was on oxygen levels of 8, which was down from who knows what level while I was in ICU. I coughed so hard throughout the day that it scared people, and hurt my throat. Not sure how I didn't get broken ribs! I wasn't able to handle my own personal care in the bathroom. Showering was a HUGE ordeal, but the best thing to happen to me each week. Trust me, those shower caps to wash your hair in the hospital just make things worse. But I was grateful. Grateful to be alive.

The ICU... I don't even know where to start. It's like a mental block. It was boring with a lot of reality television. I couldn't move, get up, eat, pee, or breathe on my own. Life sucked, but I was alive. Even when I wondered why and what was the point of having made it - usually when someone else was wiping my ass for me - I was alive and my son still had a mother. Eating real food, getting tubes taken out daily, going to the bathroom (with help), all meant progress. But progress was scary. I had to learn how to live again.

I cried a lot in the wee hours of the morning when I'd wake up. I'd see the picture of my son on the wall. It was meant to motivate me, but sometimes it made things worse. I'd worry how everything was affecting him. Whether waiting until I woke up for him to see me was the right choice. Whether this was going to permanently scar him. Whether I'd ever be able to be a parent to him again, or if he'd have to go live with my ex-husband forever.

Being sick without knowing the outcome is scary. Everything changes. I didn't want to let other people see me break down. I wanted to be strong and brave - even though I almost died - I didn't want to scare people. I don't like people thinking I'm weak. My body is a wreck but I'm not weak. Things are so different now.