Paul's Reality

Not a whole lot has changed since my last post. It is difficult to write today, so bear with me if there are mistakes I don’t catch.

Getting out and doing errands is still extremely difficult. All it takes is one person looking at me, or speaking to me, or just standing in the wrong spot, to cause panic and failure to complete my mission. If I get past all the people standing around the store entrances, and not too many people get in the way inside, I’m OK. I can buy a few items and check out. But more often than not, I run into problems and just leave.

Food is still critical. I had none for a few days, but it’s OK. Really, it’s nothing new for me. I’m rationing what I was able to buy the other day because I’m unsure when I will be able to get more. It’s not only the matter of buying food, it’s also getting money to buy it with. I have a debit card but I have not yet learned to use it in stores. That means I have to get cash from an ATM. To date there is only one I am able to use. I have been there several times in the past week and a half. Most of the time, people just hanging around cause me to abort the mission. On two occasions there was no one there but the machine wasn’t working.

I will be seeing one of my workers tomorrow, primarily for the purpose of getting to (and through) an appointment with the dentist to see what can be done about the denture problem. I’m very stressed about that. I think there may be time for some other errands, so perhaps I’ll get caught up a little on some of that.

I did manage to get a break from stress and anxiety over the weekend. I made a last minute decision to participate in a contest on the ham radio. For my ham friends reading, it was the New England QSO Party,  Single Op High Power, CW only, run only.  I told myself I was only getting on for a couple hours to practice operating skills and improve my Morse code proficiency, since I haven’t been on the air much lately. Yeah, sure. That’s like eating just one potato chip! I can never stop after a couple hours of contesting! I ended up operating 18 of the 20 hours. I took some time out to chase the Yemen DXpedition on 160 meters, otherwise I would have put in the whole 20 hours. The result: 933 contacts, 85 multipliers, for a score of 158,610. I think that is good enough to be high score from Maine. I could have scored higher if I had done some search & pounce instead of limiting myself to running. But the point was to have fun, and running is where the real fun is for me! Yep, I know this is all gibberish to those who aren’t into ham radio! 🙂   I will of course pay a price for my fun, as always. The dreaded QSL cards will start rolling in any day now. There’s no free lunch!

I think, by most reasonable definitions, I am in crisis. I have lost the ability to go out and function in the community. As a result I’m essentially out of food. I’m at high risk for losing services essential to survival due to my inability to complete a review process. I’m so distressed I’m having dark thoughts. The prospect of ceasing to live is starting to look more appealing than living to face another day.

I am receiving services intended to prevent crisis and help me become independent. Clearly that isn’t working right now. So what went wrong? I have made progress since these services (case management and daily living support) started. I’ve received medical and dental care that otherwise wouldn’t have been possible. I’ve learned new skills and developed the ability to deal with common situations I couldn’t before. But I can still be overwhelmed by too much happening at once. When I am overwhelmed, all that progress goes out the window. I’m under a a lot of extra pressure right now, at a time when service availability is at a low.

Causes:

It’s time for annual review of my eligibility for critical medical and financial aid services. The review process causes extreme anxiety/panic. I have never successfully completed it on my own. I have always had access to some form of assistance with it. That may  not be true within the mandated review time frame this year.

Going to the doctor twice a weak for the past month has been wearing me down. As noted in a previous post, the first two visits did not go well. After having a talk with my new care provider, subsequent visits have been incident free, but still stressful enough to have an impact on my overall anxiety and ability to function.

The ongoing and now prolonged situation with the dentures, and more visits to the dentist is a source of stress.

I’ve known for some time that arrangements would soon be made to have someone pick up a borrowed radio (see previous post). That has caused much anxiety.

I asked the local radio club for assistance with site lease issues for our repeater station. I’ve been asking for 15 years and they finally took it seriously! That’s great. But they seem to be taking it upon themselves to expand their role from helping with the site lease to an attempt to undermine my plans, goals, and control over technical matters. I’m not happy with that and it is very stressful. This will either end in conflict or in me giving up control and compromising my goals.

Worker availability is at a low point. One worker has gone back to school and is in a time crunch with final exams for the semester.  The other (who is most needed with the current situation) is taking two weeks off due to not feeling well. It will most likely be a week or two after that before I hear anything or have the opportunity to receive any support. That will be far too late. I have never been comfortable working with that person anyway. There is no confidence in that working relationship. Working with that person is in itself a source of anxiety.

Result:

I’ve become unable to function, always in a state of high to extreme anxiety. When I try to go out and do everyday stuff like shopping, the slightest problem sets off a panic attack and leads to failure.

I’m critically short of food. Let’s see… two dried up slices of bread… about half a serving of oatmeal… a can of beets… a package of frozen squash which has been in the freezer for more than a year… an ounce or two of milk… half a stack of crackers… and a serving or two of pasta. When that is gone, I don’t eat. It won’t be the first time.

Household supplies are pretty much non-existent.

I’ve pretty much reached the point of not caring. I’m sick of being miserable and in distress. Most of the time I feel I would rather just not wake up in the morning than to have to face another day of the same stresses.

Will I ever be able to weather storms without falling into crisis? If not, what is the point of trying? Of living?  The fact is, I am dependent on assistance in order to survive. Not only financial assistance, but help dealing with the tasks necessary to sustain my existence. While it is true I am no longer dependent on some of this assistance all the time, I still fall into periods where my ability to do it on my own fails me.

I woke up having a horrible anxiety attack this morning. I was sweating, barely able to breathe, terrified. I was so terrified I would have rather died than get up and face the day. If I could have just willed myself to die, I would have. I could not move, literally paralyzed by terror.

My thoughts during the attack were a disjointed mix of:

Worrying about how my appointment with the doctor will go this afternoon. Going with a new person opens up many possibilities for trouble.

Freaked out about a person I’ve met twice coming by this morning to pick up a radio loaned to me last summer. I’m not at all comfortable with this situation and I’m angry with myself for allowing myself to be put in this situation. When the owner (who is not the one coming to pick it up today) offered to leave it with me last summer, I said “No, thanks”. But he insisted and I backed down after saying no, I’d prefer not to several more times. I’ve regretted it ever since. I don’t like being responsible for $1500 worth of borrowed radio, and I knew whatever arrangements might be made for him to get it back could cause me a LOT of anxiety. I have a hard time with conflict and sticking up for myself but I need to find a way to get tough. Next time someone tries to put me in a situation like that I need to make them understand, in no uncertain terms, that my answer is NO and I MEAN it’s NO. If that means getting in their face and sounding ugly, then I guess that’s what I have to do to protect myself. Why can’t people just understand what a polite no means in the first place?

Worried about running out of food. Maybe Boo will share his, lol.

Freaked out about not having time with any of my workers at a time when I feel like I’m spiraling toward a crisis. Wondering if I should try to call a crisis line when I’m receiving services designed to keep me out of crisis. Wondering what they’d do it I did, what it would mean for my current services/workers, and myself.

A flood of thoughts and emotions about letting down the one person in my life who has the most confidence in me. It’s a worker. She has said I’m her favorite client because I really try to get better and I really make progress, and she can really help me… whereas most of her clients are not really capable of benefiting from services. Progress? Where is that? Is it really progress if it can all be wiped out so quickly? I would do anything to feel as though I deserve that confidence, that I’ve earned it. But I don’t feel that way and I seem powerless to change how I feel or to improve my current level of function.

After an hour of paralyzing torment, I was able to get out of bed. I’ve been up for a while now. Getting some caffeine into my system is helping to calm me somewhat but I’m still extremely anxious and not at all sure I want to see another day.

Friday was my big day. It was the day I would be getting my dentures! After years of suffering frequent infections, a year and a half fighting the system to get the best solution for me, and months of increased anxiety going out in public due to having no teeth, this was a huge event. It turned out to be a huge event in more ways than one.

After many trips to the dentist, I finally felt comfortable enough to walk up to the check-in window and handle that process myself, instead of having my DLS worker do it. Things were going well!

I had mentioned to the dentist on a previous visit, with the temporary wax impression, that one spot was quite painful when he inserted or removed the upper one.  In that one spot I have a spur or bump in the jaw bone, very minimally covered by the gum. He assured me it would be better with the permanent denture so I dropped it.

This was the first day trying the finished product, and it hurt much worse going in! He made adjustments, but after inserting and removing them several times that spot was so sore and painful I couldn’t be sure whether it helped or not.

Then something happened that sent me into total crisis mode. He asked me to repeat certain phrases several times to gauge how much my speech was affected by the new dentures. What could I do? I didn’t know this was going to happen. I was totally overcome with anxiety and did not want to do this! I didn’t want to speak at all with several people listening, yet even explaining that I did not want to do this would have required speaking. What I really wanted to do, and almost did, was get up and just walk out. My every instinct said run! Instead I forced myself to stay and follow instructions, though every moment I knew I was getting deeper into trouble. Next he asked me to remove and re-insert them, again with several people watching. This was the same scenario, only different! Somehow I got through it but at the same time I knew I was going to suffer for it. Last but not least, I was instructed to wear the new dentures on the way home. I had important errands to do on the way home, but this completely eliminated any chance of me doing them. Less than an hour after getting my dentures, and with my speech barely intelligible, I could not possibly walk into any place of business and speak! Nor did I have the option of removing them, as there was no private place to do it and my anxiety would not allow me to do it with anyone able to see.

It is now Tuesday morning. I have probably walked 20 miles each of the last four days, just pacing the floors of my home. I have slept less than two hours a night and am exhausted almost to the point of collapse. I cannot remain focused on any task for more than a few moments at a time. I am struggling to write this post, as I constantly “find” myself pacing and wondering what I had been doing, if anything. I have not ventured out of the house and am now critically behind on errands. I am absolutely miserable and exhibiting symptoms of PTSD.

After having the dentures in for over an hour on the ride home, I got a mind numbing, breath arresting stab of intense pain in that problem spot when I removed the upper. I had been instructed to take them out when I got home, put them back in an hour later, etc. and keep alternating for a few days like that until I became more comfortable wearing them. I tried but could not tolerate the pain of re-inserting them. Friday, Saturday, and Sunday I was having some pain all the time, and did not try to insert the dentures at all. Monday morning I attempted to re-insert them for the ride to the follow-up appointment as instructed. I again got a mind numbing, breath stopping stab of pain. I dropped the denture as the pain literally brought me to my knees and tears came to my eyes. I could not do this.

When my DLS worker arrived to take me to the appointment, I was in total panic mode. I barely manged to utter a few broken words and phrases about my situation with PTSD symptoms from Friday’s disaster, and the pain. She correctly sized up the situation in deciding I could not keep this appointment.

The appointment has been re-scheduled for May 7. Although I did not speak to him myself, the word I got was that the dentist said “we will see what, if anything, can be done”. I’m hopeful some adjustment can be made which will alleviate the pain issue, but I’m honestly not sure. He already thinned the denture material greatly in that spot. Perhaps there are other things that can be done. I’m not sure. Just in case, I am mentally trying to prepare for the possibility I may not be able to wear dentures.

The sun has come out after two days of heavy rain. I really should be out walking, or better yet doing errands, but I doubt I can force myself out of the house.

A minor medical issue (mostly a nuisance) I have had for some time suddenly took a turn that could have led to serious infection. Reluctantly I asked my case manager for assistance getting to the doctor to have it treated. We don’t communicate well and her approach is to watch from a distance, stepping in only if absolutely needed. That doesn’t work well with me. By the time I show outward signs of being in trouble, it is far too late to turn the situation around.

As expected, I was told I  needed a minor surgical procedure right away. Also as expected, I was left in a situation that caused a serious anxiety/panic attack during my initial visit about this issue. The procedure itself was relatively stress free. I wish I could say it was relatively pain free, but I can’t! It was after the procedure when I got into trouble. As usual, it is the little things. I had to find my way from the checkout window to the waiting area in order to ask my case manager to step in so we could schedule a follow-up appointment. That was all it took. It was an extremely anxiety provoking situation for me. I managed to get through it without passing out, but more than a week later I am still tormented by the trauma. I’m having trouble eating and sleeping. I re-live the event a hundred times a day against my will. It suddenly imposes itself on me no matter what I might be doing or how much my mind might seem to be occupied by other things.

Another attack happened during the follow-up visit, under similar circumstances. I was left to navigate from the exam room to checkout on my own. I panicked. My vision got so blurry I could not read signs to navigate, and I could barely stay on my feet. I have little memory of what happened next but I somehow manged to get out of there.

The initial procedure had been performed by two doctors – my new primary care provider, as of this visit, assisted by another physician as she had not performed this procedure on a case quite like mine before. The follow-up was with the other doctor – not my primary care provider. He gave me instructions on how to care for the wound. Unfortunately, I was not able to follow the instructions I had been given since the wound is on my back and very difficult to see (with the aid or a mirror), much less get to.  I attempted to call the office for further instructions, but had a severe attack and passed out during the call.

Once again I emailed my case manager for assistance. Meanwhile my DLS worker had communicated some of the issues I was having with this to my case manager. I’m not sure what was said, but apparently it was effective. My case manager went much further to prevent further problems with this visit. Finally, something that, if not a step forward, was at least not a step backward! The previous two bad experiences have had a profound effect, setting me back immeasurably in my efforts to become able to obtain health care unassisted.

This time I saw my new primary care provider. When she learned of the instructions I had been given by the other physician, she did not seem amused. She says I shouldn’t be trying to care for the wound at all, but should be coming in twice a week for four weeks to have it done. Egad! I’m relieved not to have to struggle with the near humanly impossible myself, but eight more visits!? If they all go without incident, perhaps that will be enough to nullify the detrimental effect of two negative experiences. If not…

Meanwhile I’m on light duty because of this. I’m quite uncomfortable with repeated bending and twisting motions, so the Spring yard work (mostly raking) hasn’t been done. It’s not looking too promising this year, but there’s not much I can do about it. I’m also unable to carry the backpack for several weeks, so I have had to revert to using the bicycle for shopping. I don’t like that, just when I had finally become quite comfortable with the other method and was benefiting from the exercise.

I wanted to challenge myself this weekend and saw what looked like a good opportunity. Our local animal shelter was having a rummage and food sale as a fund raiser. I’ve been to something like that maybe four or five times in my life, always with someone. But I felt I could do it alone this week.

I thought there would be crowds. Apparently I couldn’t have been more wrong! The sale was to start at 8:00 Saturday morning, so I made sure I started out early enough to be there around that time. I actually arrived at the location at 8:10. It was at the town hall. There were no cars out front and nobody going in or out. Horrors! I couldn’t be the only person walking in! I would feel like all eyes were on me whether they were or not, and would surely panic. So I walked around the block a few times, checking back until 9:00. Still no activity at all, so I gave up and came home.

I went back Sunday morning for the second day of the event. This time I arrived at 8:30 and walked around the block until after 9:30. There were a few cars out front but I couldn’t be sure if they were people working the sale or people preparing for Sunday morning services at the church next door. No one in or out of town hall. Once again I gave up.

Maybe everyone went in the afternoon, but that wouldn’t have been an option for me. By noon I’m so mentally tired just from being tense and anxious all th time I wouldn’t be up to doing something like that no matter what the circumstances.

I will never know for sure, but I think I could have done it if there had just been some other people coming and going in the mornings.

Ah, back from a refreshing four mile walk. I mentioned that I have been keeping busy.

For over a week I was immersed in a complete re-write and major update of our local ham radio club website. I know it doesn’t seem like much but I spent a lot of time scanning and editing pictures, rewriting every line of xhtml, css, and what have you. Be forewarned it’s probably not wise to look around the photo section too much, as there are some really awful ones of me in my younger days! I posted them nearly two weeks ago and I still feel nauseated. 🙂

Next I tackled my own repeater web site. It is still something of a work in progress but has undergone a complete face lift and reorganization. For those not into radio stuff, a repeater is an automated relay station that extends the range of small hand held and vehicular two-way radio systems. Providing a repeater for this area is one small thing I can give back to a hobby that has been very kind to me over the years, and it benefits my community as well. This morning, as I was walking down Main Street, I was using my small portable radio (“walky talky”) to chat with a friend who was in his car about 30 miles from here, by way of the repeater. Yeah I know… in these days of cell phones what’s the big deal? 🙂 Still, systems like this have their application, and sometimes are the last thing still working in a disaster, long after other means of communication have failed.

For the past few days I have been working on equipment that will soon be installed at the repeater site. Although the system is operational, I am still trying to recover from some unexpected failures quite some while back.

It is good to finally have energy for these projects! Today, though, I’ve got to do an emergency repair on one of my antennas here at home. Hastily installed atop the 80 foot tower several weeks ago, it has partially broken loose in the wind. I need to get up there and re-attach it (or take it down) before it comes completely loose and causes other damage. I have plans to re-do everything on that, the shorter of my two home towers, later this Spring.

Unfortunately, with this extraordinarily early arrival of Spring, it will soon be time to do yard work. Ugh. I hate raking the lawn! What’s to love? Boring work, blisters, sore aching muscles… oh yeah, fun stuff! It takes about 30 hours to rake my lawn each Spring, and usually I get a window of only a week or two between the mud drying up and furious growth of the grass.  Or, uh… assorted weeds… which are more prevalent than actual grass around here.

It seems like forever since my last post. Oh… that’s because it has been darn near forever!

I’ve been working especially hard on the walking. For the past month I have been getting in 4 to 5 miles almost every day. I have only missed days with dangerous weather conditions, averaging getting my walk in 6 days a week. I’ve finally adapted. I no longer hurt for hours after the walks, I’m no longer sore, and I no longer feel exhausted all the time. In fact, I feel better and have more energy than I have had in years! Yesterday was hard. We are having a very unseasonable warm spell. It was 80 degrees yesterday, unheard of for March. Previously, the highest temperature ever recorded in the month of March was 70! The previous record high for March 21 was only 53! I should have started my walk earlier to beat the heat. I learned my lesson. It is forecast to reach 80 again today, and I’m heading out right after I finish this post.

Not only that, but I have become comfortable taking the backpack. The first few trips were among the most difficult things I have ever successfully done. I was extremely anxious bordering on panic the whole time, hyperventilating, staggering and falling down often. Just as I feared, many people stopped to ask if I needed a ride. It was horrible! But I survived, and it has gotten easier. Very rarely does anyone ask if I need a ride any more. I suppose most people who travel these roads at the times I’m out there know by now that I am doing this partly for exercise. There are a few who yell various insults and obscenities at me, but that’s always the way it is here… no matter what you do. I try to remember to pity them, rather than hate them. They are either mentally deficient, or (more likely) don’t know any better because they didn’t have a proper upbringing.

At least once a week, usually twice, I go into one of the small stores. You know, the ones I could never force myself into for the first 47 years of my life! Yes, those ones. There are two in my home town now that I’m more or less OK with and another 7 miles away which I get to on rare occasions now. The latest addition is just one mile up the road from me. That could be very convenient. Something unexpected is happening. I can envision myself getting to a point where I would be able to go into any small store, even one I had never been in before. It will take more work to get there, but it “feels” possible!

After some delays due to scheduling difficulties, the process of getting fitted for dentures is proceeding well. There are 4 more appointments, all of which are scheduled at this point. Barring any delays I should be getting them April 20.

Overall my attitude is much better. I’m excited about life and taking on some projects I had put on hold long ago. I will write more about that later. I can feel the mercury rising! Time to walk!

Yesterday didn’t go as planned. The meting to go over my DLS treatment plan went as well as it ever does. After nearly two years I am still inhibited about asking for specific types of assistance. Anxiety rears its ugly head and I question whether the things I would like help with are appropriate for the DLS program, or whether they can be implemented without breaking any rules, or whether doing so will inconvenience someone. This subject came up yesterday, as it so often does. The program supervisor gave me her email address and said I could email with any questions I have about whether things are appropriate, etc. At this point it doesn’t “feel” like that will help, but  will give it some time and see.

After more than a week of high anxiety over the planned visit with my father, I went into total panic and had to cancel at the last minute. I am very upset about it. I love my dad and miss him. I desperately want to visit and worry he may pass before I see him again. Canceling yesterday means it will be at least several weeks, likely even months, before I have opportunity to try again.

I just don’t seem to have what it takes to handle that place. With my anxiety about people and communicating, it is pure hell to go there. They have two residents per room, every door is always open, staff constantly in and out of every room. With my dad’s poor hearing I have to yell for him to understand what I’m saying. At any given moment at least 30 people can hear every word. It is one of those places where every visit carries consequences and is worse than the one before. After the last visit I was completely shut down for two weeks, not venturing out of the house, not accomplishing anything whatsoever.

It is even harder now. As I mentioned the other day, I have no idea what his current condition is. I don’t know what my evil sister has told him about me since I saw him last. Forgive me. I almost never speak of people that way but I make an exception in this one case. Last time I went, two staff members made comments about me not visiting often enough. I agree with them! I don’t visit often enough. Not nearly as often as I would like. But they have absolutely no idea what I go through when I do visit, or the far reaching consequences of shutting down and taking a step backward in my own struggles every time I do.

My time with Jessica will now be four hours once a week instead of two hours twice a week. That makes sense given the travel time required for each appointment at the dental clinic, though that is not the reason for the change. After my failure yesterday we are going to try to establish a single point of contact at the nursing home and see if we can make anything better concerning the issues wreaking havoc on my ability to visit.

I’m trying to drag myself out to do errands but am feeling very depressed today. It’s going to be difficult getting out.

I just deleted a post I made yesterday because I have come to believe I may have drawn a premature conclusion. It was about caffeine and what I (incorrectly?) surmised were changes in the way it affects me.

Suffice to say I am going through a particularly difficult time with regard to persistent anxiety and intense anxiety attacks. They are not the same thing! The early morning attacks have returned and are worse than ever. This morning I awoke shaking, probably hyperventilating, sweating, unable to move or speak! All I could do – literally – was lie there and wait for it to pass. Which it eventually did, after torturing me for a while. These early morning attacks continue to lack any particular focus. It is just an intense feeling of impending doom, an absolute certainty that something unspeakably horrible is about to happen – but with not even the vaguest notion what that might be.

During the day I am experiencing elevated anxiety about a few things. This can’t be described as attacks. It is more an ever present, gnawing, grinding, wear you down type of anxiety. It invades every thought, impedes every action. It make accomplishing any task nearly impossible. Perhaps this triggers the unfocused morning attacks.

I am very anxious about a planned visit with my father at the nursing home on Tuesday. It is always very stressful for me there, with all the people around. It is worse this time. I haven’t seen him in many months. I have no idea what his condition is at this point, since I get no news whatsoever.

I am very anxious about the remainder of the appointments to get fitted for dentures. Jessica had mentioned that it would go faster if she and my case manager shared the load – meaning that I would have to attend some of those appointments with my case manager, which I am not at all comfortable with. I was hoping this would come up for discussion when we met Thursday, but that had to be canceled. I will only see her once this week, and the subject is not likely to come up when we have to be out and about. Not only do we have plans to visit my father, but we also have to stop at her office and meet with two other people to review and revise my treatment plan. Now I am worried this subject won’t come up until it is too late, and I will get boxed into a situation that could have wide ranging consequences.

I’m furious with myself because I am still gaining weight even with all the exercise I’ve been getting. I need to get my eating under control, but of course it is driven by anxiety. I am very frustrated about not getting anything accomplished around the house. Like everything else, this is a result of too much anxiety.