Invisibly disabled…

20200228_102927

Me at the mall yesterday

I was talking to a relative when she said, “I don’t understand how you’re so disabled you can’t work but you can go to the mall and Canada’s Wonderland (amusement park). You can do things that are fun but not when it’s work…” She changed the topic right after that so I didn’t have a rebuttal but her comment made me think.

The first thing she didn’t realize is I always have a plan. When I shop at the mall I know which stores I’m going to and where they are. I select three or four maximum. I shop in the morning and on a weekday so it’s quieter. And I leave when I get overwhelmed. I was at the mall yesterday and I left a half hour early for the bus. We’d been in the food court and the noise was too much. Could you imagine a job letting me sort through my duties and pick which ones I did, choosing the time I worked for quietness, and letting me leave after a couple of hours when I got overwhelmed? Oh and I probably wouldn’t make it to work the following day as I’d need a day to recuperate.

Canada’s Wonderland is more tricky but I still work out plans. The first thing I get is a disability pass so I don’t have to wait in line. I also scout out a quiet patch of lawn so that if I get too overwhelmed I can find an empty corner there and rest. I can assure you that spot gets used. And I only go once a year, if that. Of course the next day or two is spent recovering.

Everything I do is planned out in advance, from buying groceries to making dinner. I have to time things so I don’t get overwhelmed. Overwhelmed with dinner tends to mean I need to microwave a frozen dinner because I waited too long to start cooking. Overwhelmed at the store means a lot of patience with myself and several skipped products when I just can’t stand it anymore and cannot make it one more aisle. Along with lots of reminders that I will be home soon.

I feel badly sometimes because I get my medication delivered instead of going to pick it up, especially since I go past the drug store to get to my grocery store and the gym. The thing is, it’s because I have to get the medicine and there’s a time limit. The pressure of both those things mounts with every day, ironically causing me to be unable to go there. Neither the gym or the grocery store have that pressure. If I don’t go today, I can go tomorrow or the day after. Which makes it a lot easier.

All these steps and routines I make are invisible to the people around me. All they see is me being able to handle activities like two hour long groups and fun trips. They don’t notice the spaces between those activities or how short the time is. Seriously, where would I find a job that lets me work up to two hours a day for one or two days a week?

If I was missing a leg, people would see that and know I was disabled. Instead I’m missing crucial chemicals in my brain. No one can see those. I just wish people would look deeper and try to understand instead of simply assuming. I’m more than willing to explain if people give me a try.

Moving with brain fog…

This is not the first time I’ve moved or even the second. I used to have it down pat. I’d pack like with like, starting with infrequently used items, then moving on to the things more commonly used. Food gets packed last.

I honestly thought I was following the same rules as every other time. Box after box piled up in my room and I remained confident that when the movers showed up on the 5th, I would be totally ready.

My first day here found me panicking at lunch time. I wanted to make a bowl of soup and had finally unearthed the pot but couldn’t find the can opener. Was it in a box still? Did I leave it behind in Oshawa? I called Colin and, sure enough, I had left it there. I knocked on the door across the hall and thankfully the neighbour had already unpacked his can opener and was willing to lend it to me.

I went to bed that night and suddenly realized I had left all my corningware in the shelves above the fridge at the old place. No problem. I was going to Oshawa the next day anyway and sleeping over at a friends’ apartment. I’d take my bundle buggy and put the corningware on the bottom and my clothes and pillow on the top. Except by the time I found everything, my buggy was full to the brim and my sleepover stuff was in two garbage bags. Luckily my Mom drove me home the next day because there was no way I could carry everything.

Colin called me this morning to inform me I left the blade of my blender back at the apartment. The freaking blade! I bought that blender two years ago when I came into some unexpected money. The blender was $200! So I’m going back tomorrow to do a bit more painting and to collect yet more stuff.

I’m making curry for dinner tonight. The recipe calls for white wine vinegar which, whoops is also in Oshawa, and it’s served over rice. I decided to skip the vinegar but the rice was needed. So I went to the next door neighbour this time instead of across the hall and thankfully he had rice.

When I’m in Oshawa tomorrow I need to remember the  blender blade and the handful of groceries I bought last time I was there. Yep, I forgot them too.

I am so glad that Colin’s moving out after me because I would have lost so much… so many things I’d either forgotten about entirely or thought I’d already packed.

This place has senior subsidies, hopefully I’ll never have to move again. I don’t think my nerves could handle it!

20200220_171536

My curry tonight, sans white wine vinegar but plus the borrowed rice

Brain fog…

52309278_1026323154226556_4421792483340451840_nI was on the phone with my Mom when it happened.

“Mom? Can we stop off at Loblaws on the way home tomorrow? I just need to pick up a couple of things.”

There was a long pause then my Mom replied, “Kath, you already asked me this and I already told you yes.”

Yet another conversation that had vanished into the mists. One of many.

I place everything I can into my phone’s calendar and I check that at least once a day. But not everything fits a calendar. Too many things disappear… too many things I want to remember.

I’ll be in the middle of a thought and suddenly the front part of what I was thinking is gone without a trace. So I’m stuck with the back end… and I watch as it dissolves until nothing is left. Not a single trace.

This happens several times a day, it’s not just conversations that get sucked into the void. It’s an emotionally painful situation as it hurts my children to know that I’ve forgotten what they said but it’s a situation that’s out of my control. No matter how hard I listen, some things just don’t sink in.

I told my psychiatrist what’s been happening memory wise so he’s cutting out my evening clonazepam, which makes sense although I don’t know how it’s going to affect my sleep. I already struggle with fear and anxiety when it comes to bedtime (and going back to sleep in the middle of the night). I’m not sure what sleep will be like without the clonazepam.

I go about my days as best I can. I was going to make hot and sour soup for dinner tonight but, whoops, I forgot to buy soft tofu so I’m making pizza instead. At least I have all those ingredients. The cats eat when I do so I don’t forget about them, not that they’d let me anyways. And chores get done as I see them, or get written in a “to do” book.

It scares me. What if it’s early onset Alzheimer’s or dementia? My psychiatrist doesn’t think it is but dementia runs in the family. I don’t want to watch myself slowly dissolve away. At least brain fog isn’t actively destroying my brain.

And, for the ultimate in irony, I’ve forgotten the rest of what I was going to say. I’m going to have to plan out my blog posts in point form from now on so this doesn’t happen again. But, damn, it couldn’t have happened to a more appropriate post. Hopefully I haven’t written about this before (edited to add, yes, I’ve written about this twice in the past month or two and forgot about both times).

Now my foggy thoughts and I are off to make pizza. Wish me luck!

Pas de deux…

These days I’m caught up in a dance I don’t want and don’t like. Both dance partners, anxiety and agoraphobia, hold me tight in their arms, making me feel like I’m being torn in two.

Last night I put on quiet music and turned the volume down until it was just background noise. I got my chamomile, rose, and white tea pillow spray and misted my pillow. The bathroom nightlight was on, which meant my room was dark but not too dark, and I read a chapter of a previously read book while ensconced in my swing chair.

The kittens were snuggled at the foot of my bed and stayed there while I made myself comfortable.  Then I closed my eyes and panic hit. It clenched my heart and sent my thoughts into an unreadable whirlwind. It was horrible and terrifying and I just wanted to die so it would stop. I was so overwhelmed that I couldn’t even cry.

I knew what I needed to do. I started with my breathing. This was remarkably similar to taking a toddler’s plastic bucket and scooping the water back to stop the tide. Then I grabbed my bottle of Ativan and took one tablet. The time it took between making that decision and getting the pill was probably only a matter of minutes. It felt like hours. The Ativan makes such a huge difference but it’s addictive so I try to keep from using it as much as possible.

I wonder sometimes if people think I’m faking because I manage to get out and do things but, at the same time, have my meds set for delivery (for example). They don’t realize that some days I can go out to a couple of nearby stores and other days I can’t go out at all. Plus, if I know I have to go out to the drug store every week to pick up my meds, I’m more likely to be anxious about it and unable to go out at all. And just because I can make it through a handful of stores doesn’t mean I’m fine. I’m just as likely to go home and make a beeline for my swing chair, unable to do anything else that night. Cereal for dinner and a 7:30pm bedtime. Even the cereal is a struggle.

I went out to Marshalls today and Superstore. I managed the buses and crowds and even made small talk with the cashiers. And I remembered almost everything I needed (except for the green onions). I’ve also eaten nothing but Kettle Brand Dill Pickle Chips and Bixby & Co Crunchy Peanut Butter and Maine Sea Salt Bites today. A chickpea salad with canned chickpeas and cherry tomatoes for lunch was too much. Dinner’s set to be microwave in a bag curry and rice. I’ve used all my energy today. It’s not just managing all the minutiae, it’s managing it all while controlling anxiety and agoraphobia. Meanwhile depression is still kicking around but anxiety’s been stomping it into the ground. It mostly manifests itself as inertia.

I need to get off the computer.

Fifteen minutes later…

I really need to get off this computer.

I believe this is called executive dysfunction and it shows up in my meal prep and, well, everything. Have you ever needed to use the toilet and had to give yourself a pep talk to go?

I’m simultaneously looking forward to my move and outright terrified. Right now, even on my worst days, I can say, “You’re going to Metro for milk. Can you pick me up a bag of English muffins too?” I’ll be alone when I move. Organizing my groceries around meal planning is great if I knew that I could make curry for dinner on Tuesday. That would be a definite maybe. So I wing it and sometimes even winging it is too hard. So I eat Froot Loops or potato chips and hope that tomorrow will be better.

It’s 4pm this afternoon and I’ve only got 4 thousand steps today. Maybe I’ll go downstairs to the gym after dinner. I’m hoping that extra walking will help keep me from another night like last night. Who knows?

Googles exercise and sleep quality

Apparently John Hopkins University knows and a half hour of exercise can be beneficial. So I’ll be on the treadmill tonight hoping to stave of an anxiety attack like last night. I see my psychiatrist on January 20th and hopefully he’ll have more advice for me too. Until then I’ll be doing whatever I can to keep myself calm and in control of my surroundings.

Feeling down…

Inside my stomach feels like a ball of angst… all hard edges and uncomfortable. Otherwise everything else feels flat and bland. I click on a video and am bored with it after two minutes. I didn’t nap today even though I was up for two hours last night. Or more accurately because I was up for two hours last night. I don’t want to have a repeat tonight. But I don’t feel tired, at least I think I don’t. Usually I’m exhausted by now; today I’m just here. And here is a long grey stretch of nothingness.

My psychiatrist was pleased at how my depression was being handled last month but not happy with my anxiety. So he’s been slowly weaning me off Effexor and switching me to Zoloft to deal with both of them. So far it hasn’t. My anxiety feels okay, unless it’s been subsumed by depression. My depression, on the other hand, feels horrible. I’m not at suicidal yet but I wouldn’t be surprised. I mean, how much hopeless can I take before I start looking for a way out?

I know depression isn’t a fun conversation topic but it is a very real one. More than 300 million people world wide struggle with it. A significant amount don’t survive. It’s important for people to know they aren’t alone. There are people like them. There is help. As for me, I’ll be calling my psychiatrist’s office tomorrow to try and get an emergency appointment because the 10th seems so far away.

gentle with yourself

Fading memory…

I had a great introduction to my blog but I’ve forgotten it. Which has got to be the most unfunny joke ever but it’s also so very real. Sometimes I feel like my life is fraying. I’ll think something and then it’s gone. Or I’ll be in the middle of a thought and the beginning disappears, then the end is gone and I’m left wondering what happened.

Depression and anxiety are what happened. One thing I discovered is that permanent memory loss can be caused simply by having a major depressive episode. Depression and anxiety also cause memory loss simply because you can’t focus. If you can’t focus, you can’t remember what’s going on. And, of course, meds cause memory loss too.

Memory loss is so frustrating. I’ll have a conversation with my kids and I feel like I’m right there listening intently. It feels right. Then we get off the phone (or leave the room) and the conversation is gone, or most of it at least. I watch anime shows with Colin and forget the plot completely, making the next episode that much more interesting. And I’m routinely saying, “Wait! I had a thought! Let me see if I can get it back again.” Sometimes that works and sometimes it doesn’t. And we all get frustrated, the kids because “Mom’s not listening” and me because I was listening as hard as I could and everything disappeared anyway.

Then there’s the elephant in the room… dementia. When does this switch from depressive memory loss to dementia? I don’t do odd things like put my keys in the sugar bowl and my psychiatrist isn’t worried so I guess I should stop worrying too, although it not quite that easy.

Yesterday I lay down for a short nap. I’d just fallen asleep when my phone rang. It was my psychiatrist’s secretary wanting to know if I could come in for a cancellation appointment an hour after my nap ended. I’d have plenty of time to do both so I changed my calendar and lay down. I dozed for a bit when I woke then spent some time petting our oldest cat. That was when my notification went off saying my appointment was in 15 minutes. What appointment? I didn’t see my psychiatrist for half a week. Then the second notification buzzed and I remembered the call. I don’t think I’ve left the apartment that quickly ever. I was speed walking down the sidewalk, calling and calling his office. They called me back at the bus stop then assured me there was a second cancellation at 3:40pm and I could be booked into that one, which was a relief. But, it shows again how my memory’s shot. I put everything in my phone calendar lately and check it several times a day. I can’t just wing it, if I don’t write it down, it’s gone.

My doctor’s slowly weaning me off clonazepam to see if my memory improves and my brain fog lessens. I’ve been eating well and going for regular walks in the hopes of improving my brain too. Now to see if my memory improves.

Lara sleeping like a people

If having cats improved memory, I’d be a mental wizard

Two steps away from reality…

I had a fairly busy morning yesterday. Colin and I hurried through a downpour, sans umbrellas, to catch our first bus. I spent that entire trip checking the bus app to see how long we had until the connecting bus and silently cursing whenever we stopped. By the time we got off our second bus the rain had stopped. We went to meet my Mom and walked to the restaurant for lunch… and it was closed even though their site said it was open. So onward to our favourite Indian restaurant where I had our worst food from there ever (and they’re usually amazing). I tried something new, which turned out to be tasteless, and our onion bhaji appeared to be onionless. From there we went to the grocery store, which was necessary but was one stop too many for me.

I went to pick up one last item then looked around in bewilderment. This is one of our regular grocery stores, we visit it about twice a month. I felt like I slipped though some sort of mirror. Everything was sort of recognizable but at the same time not. The only way I could describe it was by being two steps away from reality. I tightly gripped the shopping cart handle as if I’d fly away if I let go and slowly made my way to the front of the store, which was a zoo. Thankfully my Mom gave me her car keys so I could sit in quiet. There were police dogs by the exit, a promotion for their calendar, and I couldn’t even stop to pet them, that’s how badly I needed to leave. Thankfully I was okay soon after I got home. I looked it up and it’s called dissociation; just something else to tell my psychiatrist.

There’s been way too much happening. So far my occupancy date is set for January 1st but they have staggered move in dates. I can only hope I’m before January first and not after. Then there’s Colin and his move. He’s been having long meetings with one agency and has another meeting tomorrow that might be talking about a potential place. They’re even talking about a site in Toronto, which would make it hard for family to visit. But it’s urgent and any apartment is better than none. And, finally, there’s Blackie. She’s doing a lot better now with antibiotics and is absolutely ravenous, even with her sore, rotting teeth and mouth ulcers. We haven’t been able to see into her mouth so it was an unpleasant surprise to see her back teeth. I’m feeding her whenever she begs because she was starving and needs the calories. So far she’s had three dinners tonight. I need to drop some paperwork off at the vet clinic on Wednesday for a possible subsidy for her bloodwork and xrays. Then submit them again for dental surgery. But even there there’s a lot of uncertainty.  What if the bloodwork turns up something worse? I can’t picture my home without her.

And then there’s the whole move. I’ve bought beautiful things for my new place but it’s not going to be here. I’ll have a brief panic, like an elevator dropping a bit too fast for a few seconds and then the OMG moment hits. I’m not going to have my room there. Not with my teal and glitter walls. It’s going to be different. Everything’s going to be different. And I’m going to be alone in all that difference. Completely and utterly alone. Then I practice my breathing until I’m not going to pass out from hyperventilating and try to get on with my day.

And my world keeps spinning like a whirligig and I just keep hoping that my psychiatrist is right and this move will be a big help for me. Only 65 days to go.