Song: N/A

Mood: 7.5

Nightmares: 0

Ghosts: Lots

I’m beat. Wiped right out. But that’s okay, because J and I did it – we got out to see my parents, had lunch and talked just like we’d planned, and then stopped in for a few minutes to see her parents, too!

This morning was pretty rough. Getting up at 7AM is no longer one of my strengths (if it ever was), and while I don’t remember everything I do remember being confused and pretty anxious at times. We left the house and stopped at the store and split up – I went to pick up the flowers I’d ordered yesterday afternoon while J went to pick up stuff for lunch and snacks. We got back into the car and hit the road.

I kind of faded in and out for the first hour or so, and probably wasn’t the greatest travel companion. Oh, I should mention that J was driving, so me fading in and out wasn’t particularly dangerous, but I feel bad for not chatting more.

The roads were good and as we left the city, traffic thinned out. After a while the skies got a little darker and there was some fog/mist/drizzle but it wasn’t collecting on the car or the roads. There was a pretty coat of hoarfrost on the trees for a good part of the way:

Hoarfrost on treesWe got to my parents’ place and rang the doorbell. Dad opened the door, said “hi!” like he was greeting a package delivery (they were expecting a package), and then stopped and stared at us for at least five seconds when he saw that it was us. He got all excited and ushered us inside and I think I got the biggest hug from him that I can remember. It was wonderful to see the smile on his face and J and I took off our shoes and went to sit down in the living room – a living room that had blinds, furniture, and paint I’d never seen before.

Dad mentioned that Mom was going to be home soon, so J got all sneaky-like and moved the car a couple of houses down, then the three of us talked until Mom got back. I gave Dr C a call and told her we’d made it and thanked her profusely for her help (she was also very happy to hear we’d made it). A few minutes later we saw Mom turn into the driveway and waited while she unlocked the door and walked in… and also froze when she saw us. She was very happy and there were more hugs exchanged and when we brought out the flowers she said she thought she might cry.

The four of us had a really good talk, then Dad and I went out to the garage to look at his new and old snowblowers, and J and Mom put together the lunch stuff. We sat down for lunch and talked more, and it was SO NICE to see my parents happy like that. They’d sounded down all week and to see them cheerful and happy and excited was fantastic.

J and I had put together a bag of things like I described yesterday just in case there were problems, and I’d planned to head out to the car for a few minutes to calm down if things got to the point where they felt like they were spinning away on me. I had worries and anxious feelings running through my head the whole time we were there, but for the most part I was able to push them to the background and concentrate on the conversation and what was going on around me. I did use the little leather bean bag that FA made for me, and between that, focusing on my breathing and the “5-4-3-2-1” technique a number of times, and my hat soaking up the flop sweat, I didn’t have to go outside or awkwardly excuse myself once.

Even just writing that out feels really good!

Concentrating and working to keep the worries and the compulsions at bay is a lot of work, though, and even though we’d only been there for about three hours, I was getting tired near the end of our visit. J and I had set a particular schedule, though, so we didn’t have to worry about five more minutes here or there – everything was fixed.

We got ready to head out and there was another round of hugs and well-wishes. I can’t describe how good it felt to see my parents smiling like they were, but unfortunately another part of me was also keen on getting going.

We then went to J’s parents’ place and stopped in for a short visit, which was also really great. I didn’t know where to sit because they ALSO had new furniture and stuff that I don’t think I’d ever seen before. We had a good chat and talked about quite a few different things in the 15 minutes or so that we were there. It’s funny – I hadn’t seen my father-in-law for a long time and now I’ve seen him twice in two weeks. No complaints, by the way!

It felt good to be there, too – the last time I was there was even longer ago than the last time I’d been at my parents’ place. I am very fortunate to have in-laws as supportive and encouraging as they are – they’re nothing like the ones you see on TV or in the movies!

As J and I got ready to hit the road for home, I felt a little guilty that I wasn’t at my best while we were there. I was pretty tired by that point so I may not have been as talkative as I would’ve liked. If you read this, sorry about that – I really enjoyed seeing you guys!

Originally, J and I had planned that she would drive out and I would drive some or most of the way back. Unfortunately, I was pooped at that point. J, however, surprised me by announcing that she was feeling fine and perky and didn’t mind doing the drive. I offered a few times on the way home that if she was tired we could stop or I could drive; she was fine all the way home. She and I have very different driving backgrounds – she’s more accustomed to driving in the city, and I grew up in the country so I’m most comfortable on the highway. Once again, though, she did another amazing thing and drove the whole way today. NICE JOB, SWEETIE!!!

As we got closer and closer to home, I could feel the need to be home ratcheting up in my chest. By the time we pulled into the driveway it was probably good the neighbours weren’t outside because I may have hugged them. We got inside, shut the door, and I leaned against it with my eyes closed for a couple of seconds, feeling the relief that home was still there, still looked the same, still smelled the same, and still felt the same.

We decided to watch a show while we were having supper, so J went downstairs and told me not to hurry. I sat on the couch in the living room for a few minutes and had a bit of a cry – there were a million emotions running through my head at the same time. I was so happy that we’d been able to make the trip, so happy that my folks and in-laws are doing alright, and so happy that things had gone so well. At the same time, I felt the guilt about not being able to do that trip for the last couple of years and the amount of effort and planning that had to go into it (we used to be able to just toss a couple things in a bag and go). I also hate the uncertainty that goes with being sick and the knowledge that even though today worked out, it may not work tomorrow, next week, or next month. But it might. I won’t know until the next time.

I straightened myself up, got changed (back into shorts, yeah), and went downstairs and watched two episodes of Disenchantment and had supper and talked with J. Now we’re well into the evening and I’m not sure what’s going to happen next.

J has tomorrow off and I might be going to do some volunteering at the church. But I may not. What I am sure about, though, is that I’ll be thinking about today for quite some time. Man, what a day!

Thank you so much to everyone who’s stuck by me and supported me so much: J, family, friends, those in the psych careers and community… so many people! Today would never have happened without all of your patience, advice, and strength you’ve given to me. “Thanks” seems so inadequate but I don’t know how else to say it. So, THANK YOU!

Stay safe.

We’re Going To Give It A Try

I had my Dr C appointment a little while ago and we talked extensively about heading out of town to see my folks. Bottom line is she thinks it’s a big jump but a good idea as long as I don’t put too much pressure on myself, I make sure that I take care of myself while we’re out there, and if it ends up not working out that I don’t consider it a failure.

So… J has taken tomorrow off work (thank you!!!) and we’re going to hit the road in the morning while I’m still groggy (don’t worry, J will be driving in the morning). I will be taking along a little bag of things just in case, including some things to keep my hands busy, a pair of headphones so I can blast loud music, maybe a magazine or something like that, and PRNs just in case. As I have said many times – J makes everything better and easier, too, so she will also be a huge help just by being there.

We’ll show up, visit, and be back on the road so we’re home before it gets dark. I’ve found that it’s a lot easier for me to drive toward home than away from it, so I will probably drive for at least part of the way back.

If everything goes well, we should be getting home around this time tomorrow. If it doesn’t, it will be okay. Either way, I expect I will be farther from home tomorrow than I have been in the last couple of years!

Wish us luck!

Stay safe.

I Wish I’d Known Him Better

Song: N/A

Mood: 7

Nightmares: 0

Ghosts: Few

Today was… odd. On one hand, FA came over and it was a great time as usual. We geeked out, worked on things, talked about all kinds of stuff, went for a quick trip to the hardware store, and even had lunch at the burrito shop. It was fun.

On the other hand, my uncle with ALS passed away this morning. He’d gone into the hospital with breathing problems in the middle of the night on Saturday, but I don’t really know what happened after that point. I called my folks around noon to see how he (and they) were doing and that was when Mom said he was gone.

I didn’t know him well – he’s thousands of kilometers away – but that doesn’t mean I didn’t care about him. I still feel bad for him, my parents (he was Mom’s brother but he and Dad were close), and my aunts and uncles. ALS is a terrible, awful disease, but even as it progressed and he lost the use of more and more of his body, he stayed in good spirits. I think everyone expected him to be around for longer than he was; the breathing problems started suddenly and he was gone the next day. That, I think, was a shock to everyone.

For years now, I’ve had invitations from family all over the place to visit and see the sights, but even before I got sick I didn’t visit for one reason or another. I didn’t mind, though, because I always assumed that there was still plenty of time. But here’s the thing – I’m in my mid-forties. My folks are in their late-sixties, and their brothers and sisters are anywhere from five years younger to a dozen years older. Time marches on, regardless of how hard or often we deny it, or try to ignore it. I wish I’d known my uncle better, and I regret not making the effort to do that.

My parents haven’t really slept in two days and they sounded pretty beat on the phone. I don’t really know what to do, but I feel quite strongly that I should go and see them. Bring them lunch, talk to them, give them hugs. That sort of thing. I’m not sure how to go about it or when, but I need to do it soon. I need to think.

Stay safe.

Another Strange One

No nightmares last night, but another strange dream. J and I were on a cruise on this enormous, beautiful cruise ship. That was kind of weird because neither of us have expressed any interest in going on a trip with a cruise line, but we had a nice big cabin with a balcony and there was a bowling alley (which again didn’t make a lot of sense to me, what with the ship slowly rolling a bit in the water) and a huge buffet that included food that I recognized and liked. There was an old-style arcade with a whole bunch of old games I really liked that didn’t take any quarters or tokens to play, and a big clear dome at the bottom of this ship that you could go down into and watch the fish and dolphins and whales. All the time, we only saw a couple of crew members and no other passengers, which was really great.

We were both amazed and were excited to visit more parts of the ship the next day (we’d only scratched the surface) but it was late so we returned to our cabin and started to get ready to go to sleep. That’s when we discovered that I’d forgotten my CPAP machine at home.

J was NOT impressed. She called the captain and he came down in his fancy white uniform and white cap and told us there were no CPAP machines available on the ship. J then said that I was a very noisy snorer (which has actually been proven) and demanded that I get moved to another cabin.

Captain said there weren’t any free cabins. J asked if I could sleep in one of the lounges or in the aviary. No luck.

Their solution? Stuffing me in a Kisbee ring and towing me behind the ship for the night. It was a lot more comfortable than I imagined that I’d imagine it would be. The water was warm and dolphins kept coming up to me and saying hello. Or trying to figure out if I was food. I’m not sure. Either way, it was pretty comfortable. But weird.

Stay safe.

Quick Update

Song: “Flowers On The Wall” by the Statler Brothers

Mood: 7

Nightmares: 1

Ghosts: Pack

I just got home a little while ago from volunteering at the church, and J and I are going to go to the hardware store as soon as she gets home so I figured I’d write up a quick little update.

Aside from falling asleep on the couch Wednesday night again, Thursday went very well. My father-in-law stopped in for a quick but very good visit. It’s been quite some time since we last had a chance to chat (over a year… maybe two?) and it was wonderful to shoot the breeze and catch up a bit. I don’t know if he reads this but if he does, thank you for stopping by!

Yesterday evening was good, too. Due to a miscommunication on my part, we ended up having pizza instead of leftover chili. Don’t get me wrong – the chili is very good but we’d had it for a couple of days already and we didn’t have anything to go along with it. That turned out okay, though, because every once in a while it’s nice to sit on the couch and eat pizza while watching TV.

I got to bed a little later than I’d hoped last night. I woke up once from a nightmare (tent) but was able to get back to sleep pretty quickly, and I didn’t have to get out of bed.

Today has been pretty good. Like I mentioned earlier, I did get out to the church down the street to volunteer for a bit and it went well. It had been a while since I was there so there was a lot of catching up and chatting about how the holidays went.

I’ve got a couple of projects that I really want to get done or make good progress on this weekend. Some printing stuff, some electronics stuff, I and need to do some good old fashioned research. Like, the kind of research that people would normally do while sitting in a library surrounded by piles of books while they scribbled notes on a legal pad. I may ask for J’s help with that – she’s way better at that sort of thing than I am.

Next week it sounds like FA will be coming over (woo!), I have a Dr C appointment on Wednesday, and I may volunteer at the church again on Friday. No x-rays or getting poked with strange instruments scheduled, but you never know what might break out.

Stay safe.

Three Hours???

Song: N/A

Mood: 8.5

Nightmares: 0

Ghosts: Few

Just a quick post tonight. Things have been pretty good the last few days, and the weekend went by far too quickly (in a good way). I also haven’t fallen asleep on the couch since last Thursday night, which is pretty great.

FA came by this morning at around 10:30AM and we went to the hardware store. It’s been quite a while since we were last there, and there’s a section in the store where they’re always getting in different, handy, cheap, odd, useless, and utterly unrecognizable things. Between the two of us we filled a cart (the giant bag of glass beads took up a lot of space), and after we sorted our stuff and went through the cashier, both of us were surprised at both totals.

When we got back into her car I looked at the clock and was gobsmacked to see that it was… 1:43PM.


I confirmed that the clock was correct – we spent three hours in the store! I haven’t spent three hours doing… well, pretty much anything for years now. And, it was outside the house. Aaaand, there were other people there. Three hours!

We went and picked up burritos and took them home, where we had a late but delightful lunch and talked about all kinds of stuff, from pull-up resistors to, uh, tassels. We worked on one of her projects a bit, I showed her some of the electronics stuff I’ve been playing around with… can’t go wrong with a bit of a geek-out!

J and I had a good evening too. We talked a lot and watched another episode of The Toys That Made Us, which is a series about various toy lines that pretty much everyone has heard of. It’s interesting, done quite well, and some of the little things they edit in are pretty funny. I really enjoy watching shows with J – there’s just something I really enjoy about sitting with her and the two of us constantly pausing shows to make jokes or remember something.

Tomorrow I have nothing scheduled, which is good because after today I’m kind of pooped. I have some electronics stuff that I want to work on, and I need to sort through the bags of loot that I brought home from the store today.

So far it looks like I’ll be going to the church to volunteer for a bit on Friday. We’ll see what happens.

Man, what a good day!

Stay safe.

My Day In Three Haikus

Song: N/A

Mood: 6

Nightmares: 0

Ghosts: Pack

I slept on the couch
Woke up with a big headache
Why did I do that

All the tests went great
Then why do I feel like crap
Doctor does not know

Trying to get home
Road is like a parking lot
I miss the basement

Stay safe.

Three In A Row

Song: “Party Pops Medley” by Russ Conway

Mood: 6

Nightmares: 0

Ghosts: Lots

Well, I fell asleep on the couch again last night. And the night before that, too. That brings me up to three nights in a row. I don’t think I’ve changed anything other than that medication reduction but maybe I’m waiting until too late to head to bed. It’s not the end of the world and it’s what Dr C and I are working on, but the headaches, sore throats, and fogginess get old fast.

The last two days have been alright. I’ve spent more time chasing ghosts than usual but I think it’s because I haven’t been sleeping well. I’ve kept myself busy, puffed around on the treadmill, and kept quite busy. It’s a lot colder out so I have been even less inclined to go outside than usual.

Volunteering at the church didn’t work out this week after all, but like I said, I didn’t mind not having to go outside today. I’ll try again next week.

Looks like I may have an opportunity to “move up” in STO. With the drama the other day, there are now some empty fleet slots and I may be able to set one up with the group I already know. Good thing is it’s just a game so if it’s not for me I can go back – no harm, no foul.

I spent some time today pondering my situation – how I got here, why I got here, how things are, and where to go from here. I didn’t make much in the way of progress but I have more notes now at least…

Tomorrow is the appointment with the lungologist. The more I think about it, the more I really don’t want to go. It’s cold, it’s downtown, it’s a doctor, and it’s another test. I’ve pretty much had my fill of CT scans and the various probulators. I’m crossing my fingers that tomorrow ends up being like the kidney appointment last week was – the final one for my lung stuff and I’ll be done with it. Being broken, fat, and knowing 839 doctors by name sucks.

Stay safe.

Aaaand I Fell Asleep On The Couch

Song: “Heart of Glass” by Blondie

Mood: 7

Nightmares: 0

Ghosts: Pack

I’m sure it’s just a coincidence but last night after making the change to my quetiapine, I fell asleep on the couch. I haven’t done that for quite a while now and I didn’t have anything pressing going on today so it wasn’t the end of the world, but I woke up around 5:30AM with a headache and a sore throat and stumbled into bed to sleep for another few hours.

I had a really strange dream last night. It wasn’t a nightmare, didn’t wake me up… but it was strange. All I remember about it now was that I kept picking up a green can of Pringles (after doing some research I think it must’ve been sour cream & onion flavour) then flipping it up in the air end over end and then missing it when I tried to catch it. Over and over again. It was spring, the leaves and grass were that nice bright green, it was a clear day, and I was standing in the garden in the back yard. Toss, flip, drop, pick up. Toss, flip, drop, pick up. Over and over.

Despite all that, today was not a bad day. It wasn’t until mid-afternoon before the headache went away but I got quite a bit of stuff done. Lots of sorting and tidying, although you wouldn’t know it by looking at it… but like they say, you’ve gotta break some eggs if you’re gonna make an omlette.

My sister asked me if I could print her a coin holder thing. It didn’t take me too long to draw up a little proof-of-concept thing that I think will work. I printed it up and sent a couple of pictures to her and it looks like I understand what she wants, so that’s good.

I finally got my stuff together and sent out my texts today. First time since Christmas. I was getting texts from people asking if I was okay or if my phone was dead, stuff like that. I found a bunch more silly little video clips to send, too, so I should be set to send them regularly again. I enjoy sending them out – it’s a little way to say hello and hopefully one or two people will find the video amusing.

I’ve been doing my sleep diary, but the forms Dr C gave me to fill out have really small spots to write and no room for extra stuff like nightmares so I’m just doing up a spreadsheet. Hopefully that’ll be okay. I don’t think she’s analyzing my handwriting or anything like that.

Hopped onto the message forum for the Star Trek game I play and got there just in time to watch all kinds of drama unfold. I get that people have different opinions and like different things, but yeesh – it’s a game. Calm down. Hmm… now that I think about it a bit more, something like that would’ve bothered me a lot more a year ago.

Found a flashlight that I had long given up looking for today. It’s a great little penlight that my nephew gave me years ago and it was stuck behind the padding in a laptop case. The battery hadn’t leaked and it still worked, too. Now that I’m thinking of it, I’m pretty sure the last time I used it was during a work trip to Colorado back in… 2011? Something like that. Anybody who’s been around me in a store knows I really like flashlights (you can’t have too many of them, there are all sorts of different kinds and sizes for different jobs, they’re really handy when it’s dark, and they generally don’t go bad), so having the little guy back is good.

Tomorrow I plan to do some more sorting/tidying/throwing out, take another run at the kitchen, work on that coin holder for my sister, and puzzle over some electronic modules I’ve never used before. Oh, and I also have to call the clinic and make the appointment for my arm surgery. Thursday I still plan to go over and volunteer for a while at the church, and Friday I have that appointment with the lung doctor.

Stay safe.

Tales From The Ward, Part VI

Day 10

Slept poorly, had a panic attack at about 11:30PM, I talked with my nurse but couldn’t calm down until after she gave me something for the panic. Finally got to sleep close to 1AM, then had lots of nightmares again.

I don’t feel like I’m making much progress.

Morning nurse is V. She’s good.

Breakfast was Special K, bacon, potato, and apple slices.

Quite tired today.

Lunch was corned beef sandwiches, fruit, and chicken noodle soup.

Afternoon group was good, we made motivational posters for the ward.

Made the mistake of asking someone how their little cigarette roller machine worked. The answer I got was really rude and upsetting.

Supper was chicken thigh, rice pilaf, and a Nutri-Grain bar.

J and Mom are coming over at 6PM. We’re going to walk over to the Walmart and do some shopping. I need some shoes and I really want to buy the ward some more colouring books and markers since what Nurse J loaned me is in rough shape but really appreciated.

It is very difficult to write here. There are too many sounds and voices (some distressed) that interrupt my thoughts.

Went out with Mom and J. We did a lot – went to Walmart. It was very difficult even with the PRNs that my nurse gave me. We finished at the store, then went to the waiting area just outside the ward to talk for a while. I was starting to feel very unsettled so I had to go back in early. I feel very guilty about that – everyone is being so supportive but I can’t even sit and talk with them for very long. I feel awful about it.

Nurse J is working tomorrow (I think). I plan to give her the colouring book back along with the extra stuff I bought. I hope the ward can get good use out of the markers, books, cards, and crib board.

I don’t know how I feel right now, other than bad. Antsy/sad/embarrassed/hopeless.

I’ll get to see Dad, Mom, and J tomorrow. It will be good to see them. I don’t know if I’ll be able to hold myself together if we go out.