Pain, dealing with pain and trying to stay Elizabeth (and postcards)

It has been a kind of rough few days. That’s probably not helped by the fact that I am in, a large rolling ball of pain. Admittedly it was pain from something that I chose to do, but that doesn’t make paying the cost any better (how come they never allow you installment plans in something like this?).

I am working on postcards again. Which is a bit of a joke. Because working on Postcards is how I have been keeping my identity, how I focus on who I am by what I can do; in what I can achieve. I am not what I do, but either I am just a body in pain, a person who is a list of illnesses and disorders either I AM my disease and disability or I am Elizabeth McClung. And so during the day, and the week, I can be Elizabeth McClung, except when people see the wheelchair. But last night, like every night, I cry. It is mostly because of the pain. I can’t cry normally anymore because I don’t have the diaphragm or throat muscles which can't talk lying down, so I can’t sob, I just have tears running down. I cry because the pain of my spine and my back and shoulder lying with the weight of my body hurts to the point where sometimes I pass out or go into a seizure just from that pain once I am put into bed. So that’s the part of the day when I am not Elizabeth I am pain and symptoms and disease.

This weekend brought the four week total to 131 postcards, which is I think a record for me, I couldn’t say because until the recent spreadsheet I haven’t been keeping track and there are still holes in that like my mid-week posting of postcards.

These are some of the cards from last week. Here are some of the cards of Nature, we go through these a lot because children of a certain age or younger like baby animals and we have a significant number each week we send out to kids. But we send to all ages, we send some every week to seniors too, and all the ages in between. I wish we had some people in Central or South America who requested cards, or some more people in Asia or India. Last week there were 14 new people requesting postcards, this week already a handful, usually 7-10 people a week, now. I do the new people first.

Here are some of the postcards of girls already posted. You may recognize some of them. I don’t get them in bulk lots or even in small lots but once I see a card I like, I try to get it again.

This week I tried to do a theme of couples, and yes, a group of HETEROSEXUAL couples too (hey, even sexual minorities deserve representation. What? You mean they are the MAJORITY? Okay, that’s pretty weird – girls with girls is better, take it from me!)

And here are some of the boys we sent out this week, ahhhhh, aren’t they cute! Well, at least, um, smooth – one thing I LIKE about Japanese anime pictures – no hairy guys! Woo hoo – if only the world were so well run. All I can say is that with summer ending the reign of terror of the hairy men who love to take off their shirts is over (I think there is a syndrome: the MORE body hair, the greater the likelihood of taking off your shirt in summer near me and traumatizing me!)

And of course the week wouldn’t be complete without a nice goth loli card (although this is sort of goth loli goes a wee creepy, like “Daddy!” creepy).

I will try to show a couple back of some cards in a future post. But I hope this has been nice for you, I know it isn’t deep. It is about me keeping it together. I have to go on. I have to get out of bed. I want to write a blog. When all you have is pain, and frustration, and discrimination, I write about the nice cards and what I hope they do – which is bring a smile from those who get them. And a thank you to those who send some to me. I haven’t been able to sleep well in a while because the pain is so bad. I don’t after all the promises, yet have an appointment with a pain specialist. Lyrica helps, it helps me to function to an extent during the day. The tramadol is barely working. So I could stay in bed, except I vowed to go outside four days during the week, no matter how bad it hurts. Fighting FOR something keeps me alive, it keeps my systems going. No, I don’t think lots of happy thoughts. But I keep going. It is not because I am inhuman and don’t feel pain or there is not ‘give up’ in me. I would LOVE to give up. But if I do, will I get back what I lose? I lose function somewhere in my body every week. I lose feeling or use of something every couple of days. I have so much loss, so often I don’t know how to grieve. Maybe next time I will talk about how much brain damage I have, and how fast and how extensive it is; and how I am trying to cope with it – I can’t beat it, or force it, but I can’t stay in bed either.

I don’t want to die, but I am getting very tired of trying so hard, of doing so many of the ‘right things’ and yet, for what? More pain. More seizures? More brain damage.

So off to do postcards, where I can look up emails and get an idea of what might make a person happy. Because I know the intense desperation of the weight of life, and how there are no pleasant surprises. Well, except for a postcard, if you only ask.