I need guidelines

From sunlitdays @ LJ

I find self-help books to be sort of a double-edged sword. On the one hand, you're reading someone else's opinion of how to live your life, how to fix your problems, how to be happy, etc. So the implication there is that you're doing it wrong to begin with, and the way you're going to solve that problem is by finding an expert to guide you a different way, because they have it figured out.

Then of course you realize there are 9 million books on this topic and they all contradict each other. Who's the expert now?

I've learned, though, that you can find useful truths in self-help books, at least for your own life. You don't have to believe every word in order to take something away from the book.

And with that, I've been searching for a way to be sick. Not a way to get better (not happening), or be happier (too much pressure), but a better way to think about chronic illness and how it has taken over my life. (See, "taken over" ... I'm sure there's a self-help book on negative thinking, and I've already failed that author.)

So without further ado, I bring to you the book that I recently added to my Amazon wishlist as a "high priority": How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.

What I think I really need is someone to tell me how to be at peace with what's happening. One thing I'll give myself credit for is adapting to the new "normal" relatively quickly—I have a penchant for realism in the face of drama—but my chronic illness is a progressive one. More and more problems arise, and the outlook is not positive at all of that ever changing. So how to cope when your new "normal" is soon replaced by another new "normal" and another and another and another? I don't want to trick my brain into thinking this is okay ... I really want to find a tactic that will work no matter how many things go wrong. Each time something new goes wrong, I find myself grabbing air in the dark to find my way again. I need some new tools, and judging from the reviews of this book, I may have a better shot with this.

How DO I feel?

Doctors and good friends will always ask how you feel. When you have a chronic illness, you could go on and on about it. But the questions are, what's important for others to know and how can you make yourself limit it to the ones that won't alienate you from people in your life?

From weheartit.com

For instance, normally my limbs are tired. I probably have a slight headache. I've likely been dizzy on and off throughout the day and I can't see out of my left eye very well. Standing makes me want to sit. Sitting makes me want to stand. My stomach may be a little upset. When I close my eyes, or sometimes without even closing them, I sometimes see blue fireworks. Almost every day I have quick bouts of involuntary movement, whether it be an eye tic or a full-body shift. I probably only get about 6 hours of sleep each night because I wake up randomly and can't get back to sleep. I see floaters, lots of them, any time I'm awake. And I have lots of feelings I can't put words to ... vague aches, feeling off, bad balance, that kind of thing.

And that's just some of the physical stuff. I won't go into the emotional stuff in this post.

But you can see how hearing the laundry list of ailments, seemingly unrelated, can cause discomfort for the listener. If I were them, I'd first think, "Wow, she complains a lot," as well as, "I get that too. That's nothing." Sometimes I read people's laundry lists online and think, "Shut up. That can't ALL be happening."

Yet it really can. It happens to me. And only when you stop and think about all the things that are wrong in a given day do you realize how it's possible.

So when I'm asked how I feel, I have to stop what I'm doing and really pay attention to all the things that are chronically going on with me that I've shoved into the back of my mind so I don't go insane. I don't remember what normal feels like, so I have to really pick apart all the feelings I have at any given time and sort out the ones that seem abnormal enough to register with TABs.

And then I have to weigh the outcomes. What's the point of telling people these things? To get sympathy? To get help (when I know there isn't any)? To bring someone else down? I want to be honest about my life, but I also want people to want to hang out with me. No one wants to hang out with people when you know they aren't feeling well. But what if they NEVER feel well?

I guess this is where mind-over-matter comes into play. This is definitely something I need to work on. I either block things out completely or harp on them for days/weeks. Neither of those is probably the right thing to do. They say to "listen to your body," but my body has so many secrets, I'm a little terrified of it.

Causes

How much of how I feel is because of my disease? How much of it is from the other disease? How much of it is from the depression caused by them?

How much of it is caused by reacting to feeling sick all the time? How much of it is "all in my head"? How much of it would show up on a test? How much of it is due to the meds? How much of it is because of the way normal people go on with their normal lives while I'm sitting here asking these questions?

How much of this is real? How can I get the rest of it to go away?

Fatigue and the struggle to be self-sufficient

As a sick chick, I'm all the more grateful for my husband, who is currently puttering around the kitchen putting things away and fixing stuff while I sit on my laptop writing this entry and thinking about how my legs hurt.

Hm, just heard a bang followed by a fork hitting the floor. I called down, "Everything okay?" Right, like I'm willing to stand up right now if the answer were no. Well, okay, I WOULD stand up if he needed me, but that doesn't excuse the relief I felt when he answered, "Yup."

That's the thing with fatigue. I COULD stand up. I can. But it feels like I can't, and once I'm up, how long can I be up before I feel the urge to sit?

And then the thoughts lead to "How can I function in this world without my willing slave husband to fix things for me and pick up the slack while I waste away typing on the Internet?"

Which of course leads to the "I'm going to die alone" train of thought. The "what ifs." As Susan Jeffers calls it, the Chatterbox in your brain, the negative, spiraling thoughts of doom and lonely demise.

I've been going to the gym for the past few months, even though I still have unexplained symptoms that lead me to believe I should stay as close to sitting or lying down as possible most of the time. My going to the gym is an attempt to build muscle and hopefully, in doing that, giving myself some inner strength to go with my outer strength.

So far, not so good. Especially when I can feel my heart skip beats while I'm at the gym. But I've already been to a cardiologist for this problem, and he seemed to not give much of an answer despite making me wear a monitor for a day and giving me my first sonogram. So now my "Chatterbox" starts the whole, "Well, you've already seen that doctor and he didn't say anything. But should you go back? Is this worth another trip and another copay and another day off from work? What more can he do for you? And when should you trust what a doctor says even though you can tell something isn't normal? Wouldn't it make more sense to go anyway and waste your time and money and annoy your job than to die of cardiac arrest right here on this bike watching 'SportsCenter'?"

So no, the gym isn't helping.

I remember when I first moved in with my now husband. Suddenly there was someone else to take out the trash—so I pretty much stopped doing it. I had more time to cook, which is something I enjoy. And since I cook, my husband decided it was only fair that he clean up the dishes afterward. So I stopped washing dishes. And now when the dishes need to be washed and the husband doesn't do it that same night, I get agitated. It's not like I CAN'T wash the dishes or that I feel my husband SHOULD be the one to do it all the time. I don't feel like that at all. But I see washing the dishes as a project now. And I seem to be averse to starting projects, because I know I'll want to sit. I know my arms will feel weak. I know I will feel like I can't do it.

For instance, we just had a company come to measure our kitchen counters (we're going to have them replaced). I had asked my husband if we should empty the drawers/cabinets under the counters before they came or if it wouldn't matter. (I didn't know if things were open underneath the counters or if there was a separation between the counters and the innards of the drawers/cabinets.) My husband said it would be fine.

Well, it wasn't fine. There's now dust and wood particles and mystery fuzz that ended up on all our pots, pans, cutting boards, baking dishes and tins, aprons, and in that variety drawer that holds everything from packing tape to birthday candles. And on their way out, the contractors handed us a booklet on the lead paint they may have disturbed while pulling off the backsplash. That's probably in there too.

So the dishwashing project just got multiplied by a zillion. The idea of a project involving taking everything out of every drawer and cabinet below the counters and washing them all and drying them all sounds less than fun and a little gross. But I know how it will probably go ... I'll empty, husband will clean out the spaces, husband will wash, I will help to dry, and I'll organize things to be put back in.

This sounds doable to me IF I can bring a chair.

But only because I am splitting the work with husband. I could easily see myself freaking out about the amount of work involved if it were just me.

Then again, if it were just me, I may have had the foresight to empty the cabinets ahead of time. Purposely to avoid this issue, even if it were all for nothing. Maybe that's me being a woman, wanting to be prepared all the time. Or maybe it's the chronic illness mentality, doing what you can do when you can do it to avoid doing even MORE at a possibly inconvenient time later. Always waiting for that lifelong paralysis shoe to fall.

A positive message about doctors' office staff

Might as well start out positive because I'm sure there will be plenty of negative as this blog progresses, especially as it relates to the doctor-office experience.

Juggling a full-time job and a full-time illness makes for tricky scheduling sometimes. Aside from getting home in time to take medicine (and I'm not talking about pills here), getting chores and errands done during the few hours when you feel good enough to get them in, and trying to put in face time with friends and family so they don't think you're antisocial, there's the very troubling appointment-test-followup trifecta:

• You see the doctor; she suggests a test (day 1). 
• You go to take the test at a different location with a different staff (day 2). 
• You go back to the doctor so she can read you the results (day 3). 

So that's three days you may have to take off from work, three copays and three trips to waiting rooms. Zzzz.

You'd think that would equal three calls to the offices to schedule these appointments, right? No. Suddenly your job is holding an event and you have to be there. A friend you haven't made time to see in months wants to meet for coffee. A totally different doctor's office calls and cancels an appointment you've had set up for five months and has taken the liberty of rescheduling it for you during your test appointment.

You try to work with them but the doctor's only in on Thursday mornings—and that's it. Not including the three weeks he's off in July, August, November, January, and March. So you change your test appointment, but then your prescribing doctor decides she's on an emergency trip to an undisclosed location for four weeks and your matter could be pressing, so you should really get in ASAP. Which means rescheduling the appointment for earlier. But when you call, the only available day is the same one the other doctor re-scheduled you for. So you have to call that doctor back and beg to bump someone else. They squeeze you in on a day you were supposed to meet the friend you haven't seen in months for coffee.

So now you're up to about six calls and an angry friend, and you're not even settled yet. Everything's dependent upon the answer to something else.

Did I say there was a positive message here? Oh right ... the positive part COULD be: the office receptionist.

I won't sugarcoat it: Sometimes you will not find someone easy to work with. Take, for instance, my general doctor's secretary. She sounds pissed before you've even said a word. So it's a HUGE relief when you get someone who understands your situation.

If they're good, they will not let their voice waver with the annoyance they may or may not feel hearing from you for the umpteenth time that day. They will express their understanding. They'll say call back if you need to change it again. They'll repeat to you what you need to do for your test because now you're so frazzled you've forgotten who said what to you about which day and at what time. They'll offer to call other offices for you or to fax records over. These people are rare, and they are a find.

If you can manage to find one of these people while enduring the trifecta, you're golden. If not ... you may need to rethink that test. It's just your health, right?

I don't remember what normal feels like

It's a weird thing to be jealous of people who wake up feeling fine. And when you have a chronic illness, it feels like that's everyone but you.

People with chronic illness are forced to accept their circumstances as "the new 'normal'" when their symptoms, which often come and go, no longer go away as their disease progresses. So nowadays, for me, it's normal to be sitting down and feeling like I might fall over. It's normal to see a blurry spot or flashy light along edges of everything I look at.

So when I go to a doctor and he asks how things are, it's no longer "I'm dizzy" or "I see weird things." He knows that already and can't fix it. So now the answer is just "Fine." If it's not worse and it's not new, it's now "normal."

I can't help him and he can't help me.

That's chronic illness; it's not about cures, it's about coping and getting used to the new "normal." I started this blog after reading some inspiring ladies who keep up their own blogs on the subject of being chronically ill. There's much comfort in knowing you're part of a group, even if the group is "disadvantaged." I owe a lot to Jenni Prokopy of ChronicBabe for making me aware that these MS mavens, diabetes divas, lupus ladies and cancer chicks exist and are talking about disease and life in real ways.

There's no beating around the bush here. Chronic illness sucks. But I hope to give myself some much-needed therapy by writing things out and taking part in this community I only recently learned existed. And if I can help a sick chick somewhere to feel better about things, or if I can help the TABs (temporarily able-bodied people) to understand what people with chronic illness go through, all the better!