My current hellth status has been upgraded from wanting to shoot myself to "Feeling Human".
I hate writing about what I go thru MS-wise, because it makes people worry, and there's nothing anyone can do to make it better. So they feel helpless and I feel guilty for making them feel bad. There's a fine line in communicating and I haven't found it yet. Maybe I should make up a list of "10 Things Not to Say to Me when I have MS". Cause sometimes I don't have it, ya know.
The other day, I wrote about some symptoms that were going on, and the Blogher volunteer wrangler had read my blog, and emailed me to ask if I was still planning on being a volunteer to help at the convention. I felt ... invaded! I felt spied on. I felt "found out". How STUPID is that? I write on a public blog for hell's sake! But it's true - in order to be treated "normally", I hide how I'm feeling as much as possible cause I hate the way people change towards me. Don't overly care about me. There's a lady here where I live who's taken me on as a personal project. If I don't answer the door or the phone, she walks around to my living room window, pulling aside the curtain to "check on me". To me, not answering the door or phone, and having my curtains drawn, means I want to be left alone. To her, it means I've fallen and can't get up, or I've swallowed all the pills. I HATE it, but at the same time, I understand her concern, so I walk a fine line between wringing her neck and saying thank you for caring. I just don't know where the line is.
I don't want to make my mother cry, or make my sister worry. It just adds an extra burden to whatever I'm already going thru, but at the same time, writing is the only thing I can do as an outlet to the MS hell I'm going thru at the time. Because I do isolate myself when in a flare-up, writing for the blog is an outreach of sorts, one that I can tolerate and not feel so alone. There's nothing anyone can do to make it better, and that's more acceptable via online - of course no one can do anything to help, because everyone online lives inside the screen and can't have any contact with me. It's easier to accept the concern online because I know I can take it at my own pace. Typing is easier than talking to anyone.
That's not to say that I don't want to hear from real life friends and family. Not at all. I do appreciate it being expressed thru the blog and emails, rather than in person. The isolation isn't a bad thing. It's a regrouping of energy, and resting and yes, hiding. It doesn't help to say I shouldn't be ashamed of my disease, that I can't help what's going on. I know that in my head, but reality is - I do feel that way, and I HATE it, therefore, a part of me hates myself for having it. It is stupid and wrong, but that's how it is. I've been diagnosed for 8 years now, and it hasn't changed. I've survived and reached the positive side of the death of a child, and sexual abuse. It's not like I don't know how or haven't experienced how to heal mental or emotional trauma. MS is the hell that keeps on giving. It keeps me constantly scared of losing more function. I feel like there's an evil Stephen King clown living inside me, laughing at how he can make me feel like a drunken idiot who can't talk or pee right. It's a force inside that tricks me on a constant basis. An evil trickster who hates me for some reason.
Yea, I need counseling. Don't think I haven't tried. I know how. It hasn't worked. I don't have a "healthy attitude" about having a chronic and progressive disease. I'm not one of those inspiring people, rising above the disease. I am sucker punched by flare-ups, and I resent the hell out of it.
So when Sizzle read that I was not doing well, I resented being "found out". Like I said - ridiculous. I've worked a little bit here and there in the last 8 years, and have learned not to say anything about MS to potential "employers". I know for a fact that I haven't been hired a couple of times because someone within the organization knew I had MS. I am very careful about committing to anything that requires my physical presence. I know I could handle a part-time job, but I would have to have a boss who understood that I can't show up some days, and maybe for several days. The perfect job would be some sort of data entry - something I could do from home during the bad days. I haven't found such a job or such a boss. As much as I want to work, NEED to work, I just can't in good conscience commit to a job where I couldn't promise to show up everyday that I'm spose to. My workaround for the need to feel worthwhile is to volunteer where I can, help old ladies in wheelchairs and take care of old men who need Hospice.
There is still some sort of denial going on, because I literally thought I would show up at Blogher, and no one would know I have MS, and everything could be normal. I saw it as an escape from those who know I have it. Is that not the craziest thing you ever heard? A BLOGGER convention, and I have a public blog. Even I am astounded at the level of denial I evidently have.
This last flare-up was the scariest by far. I couldn't swallow, and if I said more than 2 sentences sometimes, I couldn't breathe right because my throat got numb, and the choking and gagging would shut me up. Turning my head make me dizzy and nauseous. I can't for the life of me figure out how to spell "nausea". Vomit. Vertigo. I spent at least 36 hours in my chair, unable to tolerate standing up. I don't remember peeing, but I wasn't drinking anything either. The heat may have set it off, but there were 2 good fans going, and keeping the curtains closed helped quite a bit. I was actually chilled for 2 days, but in mortal fear of over-heating, I kept the fans on high, wore a tank top, and a light, airy skirt. The air flow was quite cooling, but I was getting worse instead of better. Cooling down normally helps, so this was frightening. My family wanted to buy me an air conditioner, but on some level, I knew it wouldn't help, altho that makes no sense at all. I didn't want to seem ungrateful, but I didn't want to waste their money either.
What finally turned the corner? Because I was chilled, I finally put on a long sleeve t-shirt and turned the fans away from blowing directly on me. Almost immediately, I felt better. The AIR was hurting me. The air that was keeping me cool to the point of being chilled - was hurting me.
Like I said ... Evil Trickster. Not only does it not make sense, it's just really rotten unfair to not know what will help cause it's just an evil clown making fun of me. I hate IT.
In checking Dr. Google for the symptoms of Vertigo, I am stunned to learn that I could have gone to the doctor for medication that helps the Vertigo symptoms. Stunned because EVERYONE who saw me told me I should go to the doctor, and I had SUCH a fatalistic attitude, irritated by the very suggestion, saying there wasn't anything a doctor could do, it was just another symptom of MS. My instinct that it felt like an inner ear thing going on was correct. I didn't realize that not being able to taste could also be a symptom. The dizziness has dissipated somewhat, but food still seems disgusting. The swallowing is better, but still there. I'm disheartened to see that I've had almost all of the symptoms listed on this page. It's upsetting to me to realize my mindset sabotages my health. It just never occurred to me that I should have gone to the doctor.
I have something to say to my loved ones about living or not living with MS, but that's another post. It'll take more bravery than I have at the moment.