Paul's Reality

I’m reminded of a familiar line from a song: “Sometimes you’re the windshield, sometimes you’re the bug.” I’m feeling like the bug this week!

The dental exam Tuesday went very well but ended poorly. Evidently my daily living support services worker had met with success convincing someone that I really do need her with me for effective communication. They did not argue at all and seemed to be expecting that she would be with me throughout the process. The dentist was kind and agreed, based on the letter and a subsequent talk with my therapist, that it would be in my best interest to have all the teeth extracted. Wonderful! But the appointment ended with a referral to the same oral surgeon I spent the last year learning to fear and distrust. Apparently I’m stuck with that one or nothing. All I can hope for at this point is that my worker is able to pull off another miracle.

Today I had the second appointment with my new case manager (the previous one having moved on to another position in the organization). My initial reaction to this new person was anxiety and it intensified during the second meeting. I’m wondering how to get myself out of this! Not only is this a person I will not be able to work effectively with, but most likely one that will take me backward rather than forward. It’s not his fault. I’m sure he is very good at his job but he just isn’t someone I can be comfortable with. This could well be disaster in the making if I don’t find a way to extract myself from this situation.

Meanwhile several important matters continue to be unresolved. This is life as usual for me. Things come up that should be dealt with, but my anxiety prevents me from doing so. Sooner  or later they start to pile up and I get completely overwhelmed. My home has several issues that are causing progressive damage. What would have been simple, inexpensive repairs a year ago now require more time and expense. Soon they will become major structural problems if something isn’t done. Yet I remain powerless to pick up the phone and order materials to take care of the problems. I need to make an appointment to apply for assistance with winter heating costs, but that too eludes me. Several other matters in the same vein are also on my “wish to do” list. All I can do is hope things don’t pass a point of no return before I have an extraordinarily high functioning period or find some other way to deal with these situations.

Tomorrow I have an appointment for a dental exam and referral to an oral surgeon. This is a continuation of a process that started more than a year ago. To say I’m not amused with the way it has taken shape so far would be a gross understatement.

Most people hate going to the dentist, but I dare say I hate it more than most. I have a long history of distress with all things dental, going back to childhood. Most obviously, my social anxiety makes any such visit emotionally stressful in the extreme. On top of that, I seem to be one of those few for whom local anesthesia doesn’t work well. I’ve had teeth extracted as a child and as an adult, and felt major pain every time.

Most of my life I have received inadequate dental care, principally due to the logistics of managing the process with my anxiety. Even picking up the phone to make appointments is usually beyond me, let alone actually keeping the appointment. As a result I have some major issues and a rare opportunity to get something done about it. While I have case management and daily living support services, I am in a position to take on this problem. When those limited duration services end, my window of opportunity slams shut.

Last summer, after a particularly bad dental infection, I went to a dental clinic for an exam and referral. I was hoping to get a recommendation for full mouth extraction so that I could get full dentures and not have to worry about more bad teeth and complications in the future. I went in hopeful and emerged furious. One of my workers accompanied me to aid communication, since it is a given I will communicate ineffectively and retain little in such a high anxiety situation. As part of the intake paperwork I was asked to sign an agreement stating that no patient is allowed to have anyone accompany then into the operatory, except for the initial visit. I had no problem signing it since I expected this to be my one and only visit, and it said the first visit was excepted. I suspect that exception is intended for children, but it did not state so. Under the circumstances, to say nothing of “reasonable accommodation” under the Americans with Disabilities Act, I think I should have been allowed to have my worker with me throughout the process. Some of the staff seemed reluctantly willing to allow that, but the dentist doing the exam flat out refused. Their policy also says no animals, but while I was there an unsighted person was allowed to have his canine assistant with him throughout the facility. I tried to make a case for full mouth extraction on the basis that would be best for my overall mental and physical health, but came away with a referral for 18 extractions with the expectation I would have much work done on the remaining 11 teeth in order to keep them. The dentist was obviously unprepared to accept that there could be any situation in which a patient would not have that work done. He did consent to specify general anesthesia in the referral.

I sent a letter to that clinic shortly after my first visit. In it I stated my views about not being allowed to have my assistant with me despite the agreement I signed. Of course, I got no response.

The short version of a long, complicated story is that during several contacts with the office of the oral surgeon to whom I had been referred, the issue of whether or not I would actually be receiving general anesthesia was not resolved to my satisfaction. They seemed to frequently waver on that subject. This is non-negotiable with me and needs to be absolutely decided in advance. Anything less will result in me being unable to keep the appointment, at best. At worst it could result in my becoming self destructive. During all of the delays with this process, I subsequently had several other infections, having to frequently take antibiotics and then deal with unpleasant side affects.

I finally decided I cannot work with that particular oral surgeon. The decision was made to start the entire process over again, this time going in better prepared to argue my case for full mouth extraction. The bottom line seems to be that no oral surgeon will extract any teeth that are not specified by the referring dentist. Therefore I need to go back and get a new exam/referral if I am to have any chance of getting what I need. To help prepare for this second time around, I got a list of oral surgeons to whom I could get a referral. I observed with considerable displeasure the notes pertaining to the oral surgeon I had been referred to last time said he is not good with special needs (which I think I am) and that he and he alone makes the decision about general anesthesia (the implication being that it is decided at the time of the procedure, not before, since he doesn’t do consults).

When contacted about this, my primary care provider / physician insisted it is absolutely unethical to extract any tooth that can be saved, that no dentist will recommend it and no oral surgeon will do it. Frankly I find that to be bullshit, as I know many people have perfectly healthy teeth extracted (along with bad ones) in order to get full dentures.

The therapist I have been working with for well over 15 years, on the other hand, has written a comprehensive letter to the dentist who is scheduled to do the repeat exam. It details my inability to manage dental care, the prospects for future problems after my current window of opportunity closes, and the benefits of full mouth extraction for my overall health. Whether this will make any difference remains to be seen.

Needless to say, I am very stressed about going back there. Since this is not my first visit, there is no “exception” which might allow me to have my worker with me throughout the process for communication purposes. Not that the “exception” seems to be worth the paper it is printed on in the first place. I have to admit, rather than going in hopeful this time I’m going in with a chip on my shoulder, expecting problems.

I did go to that event (known as a hamfest) Saturday. I really enjoyed getting to meet two people I have known for close to 25 years on the radio and internet but had never met previously. It was also very nice to visit with others I hadn’t seen in some time. In attendance we had three of some five or six people in the state who actively participate in a particular and very competitive aspect of the hobby. That was fun! I wish I could get out and do this sort of thing more often. At the last minute I decided to take a few items to sell and had good success with that. I successfully resisted the urge to buy stuff!

Though I enjoyed it and am very glad I went, it was a hard day emotionally and physically. It was a warm, sunny day with no real shade available, and I had nothing to eat or drink until mid-afternoon when I returned home. By that time I was dehydrated and exhausted. I think it safe to say I was a bit irritable also. An acquaintance dropped by my house Saturday evening with a broken piece of equipment he wanted me to look at. While here he launched into his latest conspiracy theory, and as is so often the case, his “facts” are wrong. He is up in arms about the way the local electric power utility bills for services, claiming it is illegal – when in fact state law mandates they must bill that way. I usually just keep quiet but this time I openly disagreed with him. That didn’t set too well. I very nearly told him to hit the road and not let the door hit him in the ass on his way out. I’m never like that except when very stressed.

I slept very little Saturday night or Sunday night, and I am more restless, unfocused than usual. My body is making its distress known, principally through assorted digestive malfunctions, minor aches, and muscular tension. It is starting to abate now, just in time for my next big stress event.

The replacement part for the desk arrived Friday as scheduled, albeit at 7 PM. Sunday I was able to assemble it, despite not feeling up to par. Boo claimed it as new territory even before it was completed. He thinks it is his new bed!

I’m not sure either the manufacturer or retailer made any profit on this sale by the time sale price, freight charges, and replacement of a damaged part are factored in. However both handled everything very quickly and pleasantly, which I will remember next time I am shopping for office furniture. I never rate/review merchandise or businesses, but in this case I think I will make an exception.

Lately I’ve been thinking about how much time I spend alone. I  calculated the percentages. It was a very simple problem. The only people I see are my case manager, daily living support services worker, therapist, occasionally some other professional, and clerks at the local stores where I shop. Since most of the shopping and therapist / professional visits are done with either my case manager or daily living support services worker, I know precisely how much time in an average week I spend around others: 3%. So 97% of the time I’m alone.

You would think being alone would be fine with me but it isn’t. I would like to spend more time with others. The problem is how to do it safely. I have never really had friends. I have acquaintances but rarely see any of them. Given my limitations, having friends would be very difficult. Most people are unable to comprehend the nature of my condition or that pushing myself to do too much can land me in crisis if not the emergency room. Just to pick an example, it is hard for people to understand (or remember) I can help with a construction project if it is a small group but I can’t handle going out to eat afterward. All too often I’ve volunteered for something that seemed safe only to find out there was more on the agenda than I was told and ended up paying for it. I rarely volunteer any more and even more rarely get asked because I’ve turned down invitations too many times.

This morning started out just like yesterday. I awoke early experiencing intense anxiety. Again it wasn’t focused on any one thing, just a general feeling of doom, dread, fear. I felt somewhat better after being up for a few hours, forced myself to go and do two very brief errands. I was very anxious while out.

Shortly after returning home I heard on the ham radio that one of the guys who was going to help the club set up for an event tomorrow couldn’t make it due to a family emergency. Was it safe to volunteer? As far as I knew there would be just two others helping today and it shouldn’t take more than a couple of hours. I know both of them and am reasonably comfortable with them. It seemed like something I could handle. I offered to assist and one of the guys picked me up a few minutes later. It went well and it was good to get out of the house! This week I’ve spent a whopping 4% of my time with others!

I would very much like to attend that event tomorrow. It is basically a flea market for ham radio stuff, although these small ones tend to be more of a social gathering. There will be some people there who I’ve spent a lot of time chatting with on the radio or via email and on-line chat but have never met. They are from some distance away so opportunities to meet them are rather limited. Now that I think about it, there will also be one there who lives just one mile from me and I’ve never met him either. He moved to this town at least three years ago, maybe (probably) more. I guess that says something about how often I get out!

I just don’t know if I’m up to it. At least 100 people are expected, maybe more. That’s a lot for me! More than likely the biggest problem will be several all wanting to talk to me at the same time. I can handle one or two but more than that I get bogged down in anxiety trying to keep up. The only thing working in my favor is that all of these people share my hobby so I feel I have something in common with them. For the most part, conversation will be limited to hobby topics which I am comfortable with. Since this event is being held just a mile and a half from my home (moved here from another location starting this year – it’s an annual event), I am apprehensive that one or two of those I have not met but share similar interests with may want to come to my home and see my radio setup after the flea market. My home is a mess and I don’t have the time or energy to get it all cleaned up before tomorrow! Clutter has been accumulating lately as I’ve really been in the throws of anxiety and overwhelmed by all that is going on or needs to be going on. I will decide whether I should try to attend when I get up and see how I’m feeling tomorrow morning. It’s a risk, but one I may take if I feel good tomorrow.

I awoke very early this morning with overwhelming anxiety. I was shaking, sweating, had a gnawing feeling in my stomach, a tightness in my chest, thoughts racing but very chaotic and disjointed. I had a feeling of impending doom but without focus, not for any specific reason or about any particular calamity that I could discern from the jumble in my mind. I tried to focus my thoughts on something calming, but could not. I got up but was so shaky I could barely stand. I have no idea what triggered this as I was fine when I went to bed last night. This is most perplexing because just two days ago I’d had a swing in the opposite direction, toward being more functional and competent.

I experience seasonal variation in anxiety. It is lowest in the dead of winter, rising throughout the spring; it peaks during spring and summer, diminishing again as fall wears on, and reaching minimum around the shortest days of early winter. This is an underlying pattern that I am well aware of. It has been this way as long as I can remember. I attribute the seasonal variation to two things. I’m convinced one factor is the length of days. My anxiety always peaks around the longest days of the year and reaches minimum at the shortest days. I believe this is because I feel more comfortable going outside or traveling anywhere when it is dark. I feel a certain invisibility, as though masked by darkness, not observed or watched as much, able to hide easily using cover of darkness if I become panicky or overwhelmed. The second contributing factor is likely to be the number of people around. There are many more people here in summer, what with tourism and summer homes/cottages. The streets, stores, and virtually any place one can go are more crowded in summer.

I also experience situational variation. My anxiety tends to be lower when I’m not facing a lot of “must do” challenges or anxiety producing situations. The more I have on my to do list, the higher my anxiety. I easily get bogged down to the point of being in crisis if I’m faced with more than one or two difficult tasks or problems at any given time. Typically, depending on the situation and how quickly it gets resolved, the situational variation produces shorter spikes or waves superimposed on the seasonal variation.

Then there is sporadic variability. For no apparent reason whatsoever, I sometimes experience drastic swings in either direction without warning. These tend to produce very short periods of either much lower or much higher anxiety. This week is a good example of both. I’m still near my seasonal anxiety peak. Situational anxiety is high, as I have many very difficult challenges and some seemingly unresolvable dilemmas facing me. Anxiety has been high and function low for many weeks. Yet just two days ago I experienced a sudden drop in anxiety and increase in ability to function.

I had ordered a large, heavy computer desk from an on-line vendor. It was a big risk and I knew it. Since the desk was being shipped freight, I would be getting a call prior to delivery. That is risky because I’m not always able to answer the phone. This is almost always the case if I don’t know who is calling, and sometimes even if I do know. The second risk would be dealing with the truck driver upon delivery. I often panic and either pass out or become paralyzed with intense fear when someone comes to the door. Although I hate to admit it, I also had doubts about my physical abilities in this case. I would be expected to take the two heavy boxes (about 100 pounds each) from the high tailgate of the truck (18 wheeler) and bring them into my home. I’m very out of shape right now and was not certain of being able to handle the boxes without injury. I would also be expected to inspect the boxes for signs of damage. If any was noted, I was to ask the driver to wait while I opened them to inspect the contents, and if the contents were damaged call the vendor I bought the desk from before signing for the delivery. I knew not all of this would happen, and was just hoping there were no outward signs of damage!

For no identifiable reason, I handled the phone call prior to delivery and the delivery itself without major issues. I felt panicky, but I worked through it and accomplished what I needed to. The shipping cartons were pristine, but during unpacking I discovered a broken part. The instructions said call the manufacturer directly if anything is damaged. Any other day in the last three months there would have been absolutely no way I could do that. But on that day, somehow I called them and got the situation resolved easily.

Here I am just two days later: a quivering, sweating, barely breathing rat’s nest of anxiety bordering on panic. I have no idea why these wild swings occur. It doesn’t seem to be related to any psychological or situational factor. Could it be physiological? Is some abrupt change in brain chemistry or function taking place to cause this? I have no idea. It remains a perplexing mystery.

Welcome to my new personal blog. Here I will be writing about my experiences in life and what it is like living with debilitating anxiety and panic. I’m 47 and have been living with this since childhood. I have tried many medications, therapy, and other aids to reduce symptoms and/or increase function but for the most part everything has been ineffective.

Everyone has anxiety. It is normal. Anxiety is what tells us when to be concerned for our safety. It is normal to be anxious in situations where there is a real threat or danger of some kind. It is not normal to feel intense anxiety in everyday situations which pose no threat. Yet for a variety of reasons, some well  understood and some not, some people have elevated anxiety in a multitude of non-threatening situations.

My earliest memories are of feeling terrified around people I didn’t know very well and even some people I did know. I hated being around people and would often become physically ill from the anxiety. It is like a predator which has pursued me through childhood, adolescence, and throughout my adult life. My inability to deal with common situations is so severely impaired that I have gone weeks without food, been homeless, and found myself in many other undesirable or unfortunate situations – all because of my anxiety about dealing with or being around people.

I consider myself reasonably intelligent. I taught myself computer programming and for a time marketed several successful programs. I am involved in a technology hobby (ham radio) and have taught myself enough about electronics to be able to design and build complex circuits and equipment. Yet try as I may I cannot fathom how it is I am constrained and limited by unreasonable fear in situations that pose no real threat whatsoever. I know the fear is unwarranted, but I cannot turn it off or control it. People say “just get over it”. I am here to say that does not work! If I could just get over it I would choose to have a life full of all the joy and wonder that others experience. I would certainly not choose to be in a virtual prison.

I have come to realize there are others struggling as I am, but many suffer in silence. We are invisible, isolated, searching for a way out; always hoping tomorrow will be better than today, that it will bring some new answer, some new path to liberation yet unexplored. Through this blog I hope to give this struggle a voice, to share the ups and downs, hopes, dreams, and stark reality of living with anxiety disorders.