The New Normal

I'm going to use certain terms here in this blog and define them as I go. These are personal definitions for things that take place in my life. Where possible, I stick to accepted medical terms but I just don't know them all. My doctors are also too busy to act as my medical dictionary.

The point is that I'm worried about establishing another new normal. You might also call it my baseline level of illness. This is how sick I can expect to be on a daily basis without factoring in any aggravating or mitigating circumstances. Since pretty much any day would have both aggravating and mitigating circumstances, it's a lot of guess work. Experience and input from doctors does help make it an educated guess at least.

A shift in my baseline illness isn't always easy to detect. There are too many aggravating and mitigating factors to explain plus there is a reliable degree of seasonal variation. There are signs that point to a change and I can't help but notice them. It's the sort of information my doctors really need. One sign is that I have a series of good or bad days in a row under a variety of conditions. Another sign is that my coping strategies start to fail. You could call that a bad sign.

I've been going downhill since the beginning of July and this scares me. It's too early for my Fall symptom changes and I have been doing all I can to be better. My summer symptoms are dominated by massive crippling headaches. They can be vise grip headaches where it feels as if someone is trying to crush my scalp or ice pick headaches where the pain is concentrated on a tiny point as if someone is trying to jab...you get the picture.

Right now, I'm suffering from a classic Winter symptom where it feels as if my bones are aching from the inside out. It is worst at the joints but all the major bones seem to come into play. My upper body is worse than the lower probably because I use it more. Then again, I keep my pain patch on my thigh these days so it might have more effect on the lower body. It's better to consider all possibilities but I think it's the greater use.

Yesterday, I had the dizzy headache. There is an area of pain that seems to contain the whole Bermuda triangle (Nope. I'm not a believer. If you combine the number of flights in that area with the unreliable extreme weather, you're just going to lose people.) for my body's internal compass. I can't tell up from down or left from right. Normally, I can still putter along or cling to something until it passes. Yesterday, I had it hit me in the dark right beside the bed. It wasn't the first attack of the day but it was the worst. Earlier, I'd fallen going up the stairs but it was a nice soft fall forward.

The fall on the bed would have been far worse if there hadn't been such a nice surface to land on. I could not get up from my position lying face down. Thankfully, Melissa was there to talk me through it because the Bermuda triangle drowns out all thought. I let gravity slide me off the bed to my knees but that didn't help. I was stuck clinging to the side like I was trying to climb into a boat. Eventually, I used my contact with the bed to guide me up all the way on it and crawled to my pillow. I get angry with myself in situations like this. My inner critic insists that I must look like such a faker to my audience (of one) and so I try to fight my way out of it. It's almost always a bad idea.

I know I can't be the only one with such a harsh inner critic so I hope the rest of you take heart in this. Lay there as long as you need to lay there. Anyone who wants to give you a hard time needs to take a long look inside themselves. I discovered that I was okay lying completely flat but the mere thought of elevating made me dizzy so I just stayed where I was. Melissa coached me through my momentary impatience but she's not always there. Getting up before you're ready is just asking for another fall. I've had falls in doctors' offices where the staff was ready to call an ambulance but I assured them I was okay. All they wanted from me was for me not to hurry.

So, I've had terrible headaches well beyond my normal range that lasted entirely too long. I had severe dizzy symptoms. (I'm trying to relax myself through more of them trying to set in right now. The meditative breathing is helping some.) I'm spending absurd amounts of time in bed. Is this another change in my baseline illness? Am I losing more ground? I don't know yet because there has been a rash of severe weather and I react badly to that.

My confession is that the thought of this as the new normal sent me spiralling downward. I started thinking seriously about death but not in a suicidal way. I was just thinking about signing a DNR order (do not resuscitate) in view of my overall health. With my family history, I'm pretty much guaranteed a heart attack or stroke at a young age. Someone asked about how we handle the things we can't control on a mailing list I enjoy and I tried to answer. My inner critic (in my mother's voice) insists that I put far too many things in that category but my doctors disagree. They agree with me that I can make some improvements at the margins but my main health problems are beyond my control. Of course, signing a DNR without having any life threatening condition in place might not even be allowed so I went to see my coach.

She was struggling with Facebook and this made me think of a few things. One is that I have had major improvements in my activity level since a low last winter. There were days when I only got out of my comfy chair to use the bathroom. I walked up the stairs without thinking about it or planning anything. Melissa resolved her own Facebook issue using methods I taught her. Maybe I should continue trying to cope with things the way they are.

There's plenty of time after a first heart attack or stroke doesn't kill me to sign a DNR or create a living will. There's also no reason why I can't have some quality of life after the worst case scenario. The methods I taught Melissa to control her Facebook issue didn't even exist until after I got sick. I can continue to contribute even if things got so much worse. My pain doc assured me that there are additional steps left to take to control my symptoms.

When I was going into my third year of illness, I knew in my heart that I couldn't survive a third year. That was the beginning of 2003 and things have gotten worse since then. Thankfully, they've also gotten better or else I wouldn't have made it.

Even another retreat to a new normal doesn't have to stop me. Maybe I need to move out of this house that causes so much stress. Why does someone like me live with stairs on a daily basis anyway? There's always a next step. Sometimes, you just have be there to see what it will be. Until then, I will bitch, moan and soldier on.