Thursday, January 19, 2017

Off The Rails

New painting: "Girl In A Hoodie" 1/18/17

The whole world has gone mad, it seems, and I should know… I went there first.

I can’t even fathom the changes about to take place in the country of my birth, the United States. Everyone is talking about it, no one is sure what is going to happen after tomorrow and I find myself with a set of worries that I didn’t have just a year ago. Maybe I should have had them then, though I don’t know what that would have done to change the actual outcome of the situation.

I worry about everything anyway, as it is. Anxiety, my lifelong companion.

January is, did you know, the month with the highest number of suicides? I read that in multiple places this month, though I didn’t see any studies or anything to back it up, I wouldn’t doubt it.

For one thing the weather is hell on most of the country here, and people don’t tend to deal with it well. I know I don’t. I hate winter, there is nothing peaceful or welcoming about it to me. I spend my days from the beginning of autumn counting until spring will return. When snow and icy wind will give way to softer breezes and budding flowers (even if I am allergic to almost everything on the freaking planet.)

For another thing, I think that by this point in the month the shiny “New Year” ideal has worn off and people realize that Bono had it right all those years ago when he sang what he did about New Year’s Day.

In my case, Bipolar has taken me off the rails of my life again. Every time it happens, I hate it more.

Every time they increase the same tired old medications because they’re afraid to give me anything else (again, allergy risk is high for me with any medication) and I’m left too tired to function to any degree that can be considered within the realm of reasonable, I hate it. Right now I’m sleeping about sixteen or eighteen hours a day. Ridiculous.

In the past few days, at least when I’ve been awake I’ve been drawn to art and music and writing even if only in a journal, and that is a promising sign. But is this small improvement all I can hope for, for the price I pay for taking the higher doses? It would seem so. But I keep taking my pills and I keep hoping it’ll get better, because there is nothing else I can do.

It feels like the winter makes my chronic pain worse, too. In case you’re coming in on this movie late and don’t know, I have a genetic disorder that is destroying my connective tissue. So my spine is a disaster, all my joints are. This disorder is the reason they had to remove the lenses in my eyes and why I’ll always be legally blind without my glasses (and in unfavorable lighting, like extreme bright and darkness, even with aphakia glasses. My vision depends on a controlled set of conditions that I can’t really control.) They had to remove the lenses to give me any sight back at all after the lenses mutated into an obstruction that kept all light from getting in, and replacement lenses failed and had to be removed before they destroyed my left eye (they only tried one at a time because they were worried such failure may occur.)

My physical pain is now completely untreated.

I was taking Lyrica for the pain in my legs for a long while and it did help some, enough to take the edge off, but I had to stop because it was making the depression worse. Now I am left with Advil and a prayer (if I were a praying soul) and that’s it. I should be in physical therapy but in addition to expensive copays there is no way I could get to the appointments since I can’t drive. I should have massage therapy: ditto.

My doctor wants me in a gentle swim exercise class and me and my ragged joints laugh at this. Even if I could get over the OCD germ obsession to get into the pool, I’d have to wear my glasses to be able to see anything and that wouldn’t work well at all. My “constellation” of medical conditions, as they call them, make each other worse: and prevent treatment most people would get for them individually, though there really is no treatment for the connective tissue thing. It just is what it is.

Between the post-stroke disability I have had since 2000 and the connective tissue disorder, I’m already a train wreck. Add in the Bipolar/OCD/PTSD and you’ve got a recipe for, well, me. This is what I deal with every day, in addition to a stack of other health issues major and minor that frustrate me at every turn.

Just when I get one under control to some degree I’ll forget and bend over to pick something up and out goes my back. I’ll reach for something and feel a shoulder go out of the socket. Ankles turn at the slightest misstep because of the shape of my feet and the fact one leg is a little shorter than the other. Damage to my right side from use of the forearm crutch for stability all these years has become a real thing.

Why am I blogging about all of this? Maybe because I’m trying to work out in my own head why I’m so tired all the time. I’m a “spoonie” and I know that but sometimes I forget and don’t understand why I get next to nothing done in a day. Age is not helping either, my 46th birthday is this spring and I feel every single year.

Maybe I’m blogging in the hopes that those of you blessed with a measure of physical health won’t take it for granted for a second. Your sight, your sense of balance, your ability to drive a car even… things I bet most of you don’t think twice about in a day. Well, I want you to think twice. I want you to think three times, even. Because not everyone has those abilities and in this country with such limited public transportation and “benefits” that don’t even cover the cost of your insurance premiums and medications, being healthy enough to work and be independent is a gift that I wish everyone appreciated.

In the end that’s what I miss the most: my independence. I had a degree of it when I could drive before the stroke. If I’d received proper care at the time of the stroke (long story short, don’t go to the small local hospital, go to the University…) I could possibly have still kept that until I lost so much of my vision, then it was game over for driving anyway.

I don’t feel sorry for myself, and I don’t want anyone else to. I just want to get all of this out of my head and away from my thoughts so I can get on with my day, whatever the rest of it may contain. I think it might include painting something. If I publish this then I can say that it also included writing something, even though the words count, really, whether I share them or not.

Don’t take your health for granted, folks. Please take care of yourselves, prevent what ailments you can and do what you can to treat the ones you can’t prevent. There is nothing I could have done to prevent the state of my health because most of my issues are hereditary/genetic. I just got dealt a tricky hand. I know there are others with far worse situations… hence why I don’t feel sorry for myself.

I just want people to understand a little of what it’s like to live with chronic pain and illness in addition to mental illness. One of those would be a full time job, put the two together, and well, you get me.

And I’m just doing the best that I can day to day, sometimes hour to hour. It’s all any of us can do.

I’m going to be very glad, though, I must say, when January is over.