For the past ten days I’ve been trapped in a physical hell. My body, which is never exactly robust, has failed me in some particularly unpleasant ways. To put it one way, I’m not entirely sure that I haven’t flushed half my body weight, and 75% of my brains down the toilet. This period in my life has come with all the usual additional nastiness. Severe weakness, bad smells, mind bending levels of pain, joints which don’t want to move properly, and so on. But as bad all those are, it’s the emotional baggage that comes with this type of episode which causes the most damage.
Guilt is the largest part of it. The sicker I feel, the more worthless I feel, simply because those small things I can usually manage to do; light cleaning, bad cooking, making the bed, are now almost impossible. It takes away the little sense of pulling my own weight that I usually struggle to hold on to in day-to-day life. We won’t even get in to how utterly inadequate I feel when I’m struck with a total inability to have any kind of physical relationship.
But, as easy as it is to dwell on the crap that goes with episodes like this, it’s far more important to keep in mind the ways in which life smiles on me.
It’s easy to dwell on the fact that my video blog won’t be up on time, because I physically can’t sit at my PC for long enough to record the video, but less edit it.
But I should be dwelling on the fact that I have the first week of my webcomic drawn, and storyboards done for the next 5. I should be dwelling on the fact that after delays in abundance, I am now on course to finally launch it in the New Year.
It’s so easy to become disheartened when I think of how I’ll probably never get to work with other people again.
On the other hand, here I sit with one novel written, a second on the way. With some 300 articles on this blog, with the are bones of a future video blog series started. So I am hardly idle.
It’s easy to dwell on the fact that I’m too unwell to have a social life of any kind.
I should be keeping in mind that I have great friends, who I know will forgive my absence from life. And I should remember that even as sick as I am, I will get to see my mom on Friday, because my Partner in Crime is driving me down to her.
The easiest of all to dwell on is that I feel lonely right now.
But I keep in mind that when I’m this sick being around people often makes me feel far worse than mere loneliness. Why? Because I feel that I smell, I feel unattractive, and incapable. So being around people in the prime of their lives…well it can hurt. But what really makes it okay is when I remember that I own two very loving, very cuddly puppies.
I guess what I’m trying to say is that the key to not ending up in a black pit of depression when you’re sick for prolonged periods of time, is to stick to the positive. And with that I mind, enjoy…
I cry an awful lot. Well at least I think that it’s an awful lot, it may actually be a very normal amount for any human being. So maybe it would be more accurate to say that from my point of view I cry a lot. And I cry for all sorts of reasons.
I cry because I’m happy.
I cry because I’m sad.
I cry because I lonely.
I cry because there’s no milk, and I really want a glass of milk.
That’s the thing, it’s not rational, or even all that predictable. And that annoys the frikkin’ hell out of me. But this week I’ve cried so much I’m starting to wonder just how many tears a body can hold. Even a body as large as mine. I keep thinking there has to be a limit, there has to be a point where my body will just stop. It never happens though.
Why this week? Well in a life that has always been filled with pain, and illness I’ve had a week from hell. For four days I managed to keep down a couple of spoonfuls of food a day. While my bum did an even better than normal impression of an inverted chocolate fountain, and let me tell you, that takes some doing. Rooms have spun, headaches have been experienced. And through it all I’ve been upset because my Partner in Crime has had the dubious pleasures of living with me at my physical worst, without the benefits of my being at my kinky worst.
The latter is what upsets me the most.
I have always believed that a human being without the sexual expression which is appropriate to them (lesbian, gay, asexual, furry, whatever expression of your particular flavour might be), is probably not really entirely sane. At the very least it can’t be healthy. And yet there’s this sexually appealing, and expressive woman who I know adores me, and all my get up and go, has got up and gone. It upsets me, it makes me feel horribly guilty. And I think that’s what people who aren’t permanently sick, or otherwise physically challenged often don’t understand.
The unending feeling that the person, or persons (for those poly-folk lucky enough to have another partner) that you don’t deserve them, and that they are wasting their lives with you. That they are wasting their (relative) youth on someone who might in some ways be far too old, far too young.
I’m a deeply sexual person. I think there may be 30 seconds in a row when sex doesn’t cross my mind in some form. I can’t be certain of it, but there might be. But I have a pretty limited sex life, simply because so much of the time I’m physically unable. For example, it’s been four years and three months since I was shown my place by my Miss in that delightful BDSM way, because my body can’t take it. Which leaves me continuously walking around with two questions chasing each others tails in my mind.
Why in the hell is she still interested in me at all? Yes, I know love. But contrary to what The Beatles had to say ont he subject, love is not all you need.
When will I lose her? Yes I know on 99% of the levels of my mind that I won’t. But try telling that to the 1% that’s a frightened 12-year-old huddled in the corner wondering when the one person who makes her feel safe is going to say “Go away, I don’t love you, you’ve been replaced.” Go on, try to, ’cause believe me I’ve tried, and she ain’t listening.
Of course the stress from that feeds into the other stresses in your life, and that makes you feel sicker, and that stresses you more, so sicker, and so on, and so forth. Until the day when your body liquefies and you end up flushing down the toilet with the rest of the effluence.
I don’t know if there is a solution to this. Crying helps while it’s happening. But the guilt, and the fears are still there when I stop, they’re only overwhelmed by the physical sensation of crying, not healed. Talking about it…not so much, there’s only so many times you can be told that you’re silly before it stops helping, and that time is long past. In the end like so many other things in a persons life, it’s just another cross to bear. Just another trial to overcome.
I just wish for once that something would be easy.
Back in March of this year I wrote an article about being a friend to someone with a chronic illness. In it I covered ten things which I feel make for a wonderful friend to have if you suffer with a chronic ailment. But the past week has brought to mind something which I think should probably be folded in.
During the past week in addition to all my usual physical problems, the universe saw fit to give me the gift of a kidney infection. The key words in that last sentence were “in addition to.”
Everyone has their own normality. What’s normal for you might well be completely unusual to me. My normality is to be a polyamorous, BDSM living, purple-haired, computer gaming ,futagirl, try saying that five times fast when you’re drunk. But my normality is also to always feel like I have the worst food poisoning you’ve ever experienced, combined with a migraine that starts somewhere in my throat, and ends at my anus, and to add extra insult to injury constant muscle and joint pain. This is what I feel, to varying degrees of severity, essentially every moment of every single day of my life. That is my normality, and I’m very, very good at hiding it from people.
But as sick as I feel all the time, I can still get sick. I can, and do still catch colds, catch the flu, get hay fever in the Summer, develop migraines (in my head), and of course I regularly get some truly vicious kidney infections.
The thing is, most people who are chronically ill will create their own type of normality. They will create a life they can live with. It may not be particularly fulfilling. It may not be easy. But they will create one, and that life is what will be normal for them.
My normality is to spend an awful lot of time in bed from sheer exhaustion after doing minor things, like hoovering. It includes things like always flushing the toilet before I use it, just in case there’s bleach in the bowl (burning badness). Spending most of most days sitting quietly because it hurts too much to do anything else. And making sure I can always reach the toilet in time based on how I feel at a given moment, and believe me after 30 years of this I can often time, almost to the minute, when an attack will hit me. Normality also includes one usually random day most, though not every, week where for a few hours I can pretend to be normal. When I get to go to town with one of my friends. Or go out for a meal. Or…just be a regular woman in her 30’s.
But that normal life doesn’t include kidney infections, and all the extra pain, weakness, and that rotten sickly feel they bring.
Normal doesn’t include a pain in my head so bad that I feel like I would gouge my eyes out with my own fingernails for just a few moments relief.
All of this is to explain something which you should never, EVER say to or about someone who is chronically ill.
Person A “Where’s Mary?”
Person B “In bed with the flu. She’s very sick the poor thing.”
Person A “God she’s always sick.” or “There’s always something wrong with her.” or “She’s always got something to moan about.” etc.
If you’re lucky enough to be physically robust you probably take that for granted. You probably take your normality for granted. And when you get the flu, or a cold, or a migraine, or…well anything, you’re probably insufferable. It’s the bubonic plague, and no-one’s ever been that sick ever in the history of history. And that’s fine, you’re entitled to feel that way when you’re well, and you’re entitled to feel sorry for yourself when you’re not.
But when you say something like “God, she’s always sick.”, to or about someone who is chronically ill, you’ve probably just punched them in the heart with something they’re probably fighting everyday to hide from the world. I know I don’t want every person on the street to see that I’m in agony, I want them to see a strong, healthy, good-looking woman. I don’t want the world at large to see a woman who sometimes has to crawl up the stairs because she hasn’t the strength to walk up it.
When you say it to or about them when they’ve gotten sick, in exactly the same way you do, but while they are still coping with everything else that they always have to cope with…that’s just about the shittiest thing you could say. And if they’ve heard you saying it, you probably turned a really bad day into a day that might make them wish they’d never been born.
I’m lucky, all of my friends are amazingly accepting, supportive, and understanding of what normality means for me. But I have had these things said to me. I’ve had the flu, and had someone say “Well you’ll be fine, you’re always sick.”
Why yes I am always sick. Thank you so much for pointing that out, and reminding me that even when I get rid of this flu, and I’ve gotten back to my version of normal, I’m still going to feel like hammered shit. Every. Single. Day.
Oh, and thank you for being so understanding of the fact that while I may be sick all the time, I don’t have the flu all the time, so I don’t have any way to cope with it, you know the same way you don’t…I hope you catch it off of me you insufferable prick!
What I’m saying is don’t do this to people you know who are chronically ill. Try to understand that they have their normal days, which may be loaded down with pain, and discomfort, with disgusting discharges, and worrying about whether they’re going to humiliate themselves on the bus. But that even that normality, just like your normality, can be made so much worse by catching something as simple as a stupid bloody cold, or a bad-tempered kidney infection. Because I don’t care how sick you feel to start with, nothing is made more bearable by feeling like you’re urinating razorwire, that’s been coated liberally with chilli powder.