Emotional Umbrella

I’m not feeling particularly grace-full at the moment.  I’ll have my emotional grace back tomorrow.  Or maybe a day later on.

I hate being too much of a downer or a whiner here.  But I guess it’s only natural once in a while.  I don’t mind at all when other people are open in blogging about their own struggles.  I actually really like getting those insights into them, and it would never occur to me to think anything negative about them for it.  I should learn to remember that more.  Sometimes I feel like I can’t tell people the bad stuff.  Some part of me feels like they’ll judge me, ironically even more so since becoming so ill.  People don’t like to hear other people complain.  I worry they’ll be saying “doesn’t she realize how many other people have illnesses too?”  Or think I”m being self-centred.  Or weak.  Or that I’m “giving in” to the illness.  Or assume that I’m just wallowing too much, and that somehow every day of my existence is no longer a struggle.   Or that they’ll be watching to see if I’m going to be one of those strong and positive patients or…that other kind.

It’s funny – when I first started this blog, I titled it Emotional Umbrella, and kept it entirely anonymous, and wrote about all the gory details of things without worrying who was reading them.  Now I’ve made friends through this identity.  And there are people out there who know me as a person and not just as a blogger.  And somehow even though these people are wonderful and accepting, and got to know me by reading all my dirt in the first place, it’s harder now to let the grungy parts show.

But today will be a little bit grungy.

I generally do try very hard to stay positive about things.  I’ve been told I’m doing that remarkably well overall.  I joke, and laugh, and appreciate the good that’s still in my life, and empathize with the many other people going through their own challenges, and look forward to a future with more freedom in it for me. And I try not to look at all the ways in which my life is now less than what I’d hoped it would be.  I do try.

But sometimes this whole situation just feels…really hard.    And sometimes when I least expect it, some of that will come bubbling up, and overflow me, and come streaming down my face for a little while.

I just need to vent today.  There are a lot of things brewing in there that I’ve been trying to ignore.  In some moments, all of this just feels so terribly unfair.  I want my life back.  I so badly want even the tiniest scraps of my life back.  I want to go out for an evening with my husband.  I want to see my friends.  I want to accomplish things with my days.  I want to be useful.  I want to add value.  I want to make my own choices on whether or not to have kids.  I want to leave the house under my own power, and not have other people stare at me, or awkwardly avoid staring at me, or ignore me completely and talk to my husband.  I want to be able to go out without knowing that the people looking at me only see the illness. I want to be able to use a normal fucking wheelchair rather than my monstrosity with its back down and its legs out and its giant giant wheels.  I want to be able to push it my fucking self.  I want to go outside when I want to.

At least I can leave with my husband’s help on rare occasions and for very short periods.  I know that I should be grateful to have that much, and really, I am most of the time.  I know that there are people out there with this who can’t do that much, even if they’re willing to risk payback.  So many people are living their whole life through a window.

I want to be able to handle simple, tiny, trivial things without being run over by a truck for it.  I was wretchedly ill the last couple of days.  Wretchedly ill, like a really bad flu, with swollen glands in my neck, and a super sore throat, and pain in my head and neck, and sweats, and aches, and stomach problems, and that deep exhaustion and weakness and discomfort that comes with any awful virus.  Why?  Because the person who comes normally to give me a bath was off sick this week, and the replacement talked a lot.  The person who comes to give me a bath…triggered intense illness from talking at me.  Putting aside the indignity of the first part for a minute, that second part doesn’t even sound like it should be real. (Seriously??).  And yet it is.  I hate the neurological piece of this.  I hate that thinking and listening and watching and reading have the potential to make me ill, or to take away even what little independence I have left for days or weeks or more.

I want to be able to write things like this without suffering for it.  I want to be able to call someone when I’m upset.  I want to be able to comfort myself with a movie.  I want to distract myself with an outing.  I want to make myself a treat to snack on.  I want to invite somebody over and let the human companionship soothe me.  I do not want to lie here.  I do not want to be alone, and in tears, and without access to any of the things that would once have calmed me. Sometimes that seems like the most unfair.  That the times I most need help and support are the times that I may be doing permanent damage by seeking it out.

I am horribly lonely sometimes.  I miss seeing random people in my day.  I miss my coworkers.  I miss my friends.  A couple of our closest friends have said flat out that they just couldn’t handle it.  One says it just makes her too sad to think about.  They still try to put on a good front for my husband, but they politely put off invitations to come visit including me.  They used to be our closest friends.  They were the ones I would have thought would stick by me.  And now I do not have their support.   They do not call.  They do not write.  Because what’s happened to me is too sad.  And I do not want to admit how bitter that makes me feel on some level.

It’s been a little extra rough lately.  Finding out that the damage could be permanent has been a tough blow, not even just in limiting my potential recovery, but mostly because I can’t justify doing the little things that used to strain my body but help preserve my sanity.  Or when I do, I feel torn up about it. And it makes me SO angry on some level that I was so badly misdiagnosed.  I cringe thinking of all the time I spent pushing through and doing more (even though I KNEW that it felt like the absolute wrong thing to do), knowing now that those actions may potentially prevent me from ever getting a quasi-normal life back.  I’m angry with myself too, for not trusting my instincts or standing up for myself enough to go against what they were telling me to do.  I don’t blame the doctors who did their best, even the ones who didn’t listen, or take me seriously enough, or who gave me terrible advice under the circumstances, or said really offensive things, or implied this was some sort of holiday for me (well okay, maybe I blame those last ones just a bit).  I acknowledge that their training in this is pathetically limited, and that’s the reality all over the world (our country is actually a leader in handling this illness, though we’ve still got a crazy far way to go).  But the one doctor from my University days when this all started, when the symptoms were more straightforward and the clues were easy to fit together, who brushed me off over and over again and couldn’t be bothered making a diagnosis that fit.  Her I hold some animosity towards.  At least for tonight.

I’m fine overall.  But it’s always harder when I’m feeling extra sick.  It means I’m doing even less than I would otherwise be able to, and that’s demoralizing.

And as an extra kick in the teeth, a really nice, supportive, well-researched online article on my condition was sent my way.  And I accidentally glanced at the comments at the bottom of it.  And I was not prepared for the amount of ignorance and vitriol there.  I probably should have been.  But I was not.  We’re just milking the system, they said.  We’re exaggerating.  We’re just lazy.  Everybody gets tired.  If it was really so bad, more people would have heard about it.  If it was really so bad, doctors would know more.  If it was really so bad, no one would ever have mistaken it for psychological.  We’re addicted to being waited on.  We’re afraid to work.  We’re imagining symptoms that are not there.  If I was really so sick, I wouldn’t ever be writing on the internet.

Well let me tell you, ignorant commenters who will never ever read this, that I write on the internet because it is all that I have, and that there are many days that I do not have even that much.  Let me tell you that I am a motivated, responsible, successful, strong, rational woman, who has lived through “normal” levels of exhaustion and aches and pains and illness, and brushed it all off just like you do.  This is not a subtle thing.  It is not something you can brush off or push through.  This is not even in the same realm as any of that.  And the fact that many doctors aren’t up to date about this illness is not evidence for your cause; It is a travesty.

It is real.  And it is that bad.  And you have just made it worse.  Thanks for that.  Who the hell feels that strongly about an illness that they don’t have anyway?  Don’t you have better things to argue about on the internet?  It’s an election year in some countries, after all.

Because the last thing I need when I am feeling this miserable, and struggling this hard, and have lost so many of the people and things that are important to me, is to have you judge me for it, and question that I’m suffering at all.

I am suffering plenty.

Asshole.