Invisibly disabled…

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!

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

It’s the little things…

As the saying goes, it’s the little things that make a house a home. And my apartment is no exception. I shared pictures of my apartment last week, stepping back so I could take in the whole room, but that meant the little things were minimalized or overlooked entirely. Now it’s time for them to shine.

This little guy sits on my monitor so I see him every time I look up. I love all the rainbows and glitter

I got this moon via AliExpress and it really does glow

When I’m feeling anxious it’s nice to have a small pep talk on being myself. It’s hanging on my closet door

Colin got this for me. Mario lives on my bedroom windowsill

No, I don’t play with them, they’re just decor. I actually don’t even have a bathtub, I have a bathtub sized shower stall. Somehow, even though my apartment is not a handicapped unit, I ended up with lowered lightswitch plates, a lowered peep hole and an accessible shower stall.

These salt and pepper shakers are part of Walmart’s Pioneer Woman collection and I though they were too cute not to buy.

Another “had to buy” purchase. I bought my little sloth unicorn at Dollar Tree and he lives on my hutch. So sparkly… so rainbowy

Shrieky Poulet, my rubber chicken, lives in my ficus tree in the living room. If you look to the left you can see one of my colour changing lights. At night it’s like he’s in a disco, minus the crowds

I saw this unicorn at Superstore and just had to have her. She was the last one in their $5 Christmas bin. Ironically they had the identical unicorns in the Valentine’s Day bin for $25

And that’s it. Well it’s not exactly it. I didn’t share my squishy blue unicorn with a rainbow mane, or my red light up pound symbol with Toad sitting on it or… well you get the picture. I hope you have things in your home that make you smile just as much as mine make me smile!

Making my way through the day…

My apartment is quiet. Sun streams though the windows while I eat an orange left over from breakfast. The cats all look so very peaceful. Angel’s curled up to sleep while Lara grooms Blackie. Smudge, my more active kitty, is playing with a cat toy and Oreo’s sleeping on my mini trampoline. My apartment is the epitome of peacefulness. So why am I so anxious?

Anxiety, to me, is like an unwanted house guest that sneaks in and refuses to leave. It lays heavy in my stomach and reaches up to squeeze my lungs. Thank goodness for cats. Smudge just jumped into my arms and started purring and demanding head and neck scritches. I’m not back to normal but I am a lot calmer than I was when I started writing. And gently rocking never hurt anyone.

I am doing all the right things to keep anxiety at bay. My home is spotless. I try to cook the healthiest meals I can, depending on anxiety and depression levels. I go out for walks. I even found a walking buddy. But it still lingers.

I wish I had some amazing twist to add here, some cure-all for depression and anxiety, but I don’t. I take my medication faithfully, make sure I get out of the apartment on a regular basis, and still it lingers.

I guess, all I can say is to try and enjoy your life as best you can, despite your diagnosis. Enjoy the little things like the purring of kittens or the fresh new buds of spring. The big things are few and far between while the little things happen several times a day. And remember, on the worst days, that depth of anxiety and depression will not last. Be gentle with yourself and wait for it to pass, like diving under a wave. Let it flow over you and wash away. And with that, even though I’d much rather curl up in my swing chair, I’m going to track down a doctor then head out for a walk.

I hope you have a good day too!

Brain fog…

I 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!

Everything’s coming up roses…

First we had my apartment. It was being built so I couldn’t see it, I had to move in sight unseen. Then they gave me a Walmart gift card with a surprising amount of money on it and a brand new double bed and bedding set. The only hard part was that Colin didn’t have a place yet… and now he does.

I was talking to his case manager today and Colin can’t see the apartment because they have a construction crew in there fixing it up. He’s going to have a full apartment; living room, dining room, bedroom, bathroom, and kitchen. It will definitely be bigger than mine. Plus he gets six hours of assistance a day. Help with dishes, cleaning up, laundry etc. They’ll be taking him out for excursions too. He can only bring a certain amount of belongings with him but that’s mainly because they are buying him all the furniture he needs… his choice. The paint in his room and his bedding are also his choice.

Colin can be extremely hard to live with (and conversely can be a delight). Just because I didn’t want to live with him anymore doesn’t mean I want him on the street or some scuzzy room. So I am absolutely amazed and delighted by this turn of events. I am so very happy for him.

Tomorrow I’m meeting up with family and friends to repaint the bedroom walls that I painted four or five years ago. And I’m going to collect everything I forgot. Brain fog and short term memory problems are a blast. Colin has laundry and cleaning up to do. Then I’ll be back there on Thursday to meet with his case manager and discuss the upcoming move.

Thanks to my anxiety, I won’t feel 100% settled until he’s in his own place. But for now I want to sing from the rooftops that Colin has an apartment!

I don’t have a picture of Colin’s apartment so here’s the scrapbooking layout I made for mine.

Home tiny home…

Everyone kept telling me I should take my time unpacking but anxiety just wouldn’t let me do that. So many boxes… so many bags of wrappings. But it’s pretty much done now. Just two more boxes to go into my hutch.

I could natter all day long but I know what people have been waiting for (mainly because you keep telling me). Pictures. Enjoy!

My kitchen’s a little on the small side but it works for me. I made hot and sour soup in here yesterday and it was so good!

My family photo wall. I still have a few more to add but need nails first

My kitchen table and a bonus cat. I think it’s Lara

My dining room hutch. The sign says “Just Breathe” and I love my little sloth on a rainbow!

My living room. I was going to get a futon but decided the room is much too small

This shows the room size a bit better

My fairy garden. Someone told me they had dry moss come back alive so I’ve been misting it regularly

I’m sure everyone’s seen bathrooms before so I’ll just share the wall art and a bit of the shower curtain

My Nana’s vase and roses. She loved those roses because they have clear droplets on the petal and she thought it looked like rain.

And last but not least, my bedroom. My Mom made the needlepoint picture on the far left

I hope you enjoyed the pictures and I’ll be posting again soon!

Colin’s good news…

Colin called me yesterday to say he’d been offered a room in an assisted living facility, which is great but doesn’t leave much space for his stuff. Then he called me back to tell me it actually was a one bedroom basement apartment, still in assisted living.

Today he called and sent me a Facebook message to say where he’s moving. I won’t say the location, just that it’s north-ish of Toronto, but he’s happy. Apparently he’s getting the whole basement so his apartment is going to be huge.

I hope this is a positive step for him, a place to sort himself out, and a place he can learn without me. He tends not to listen to me anymore, he already has all the answers and knows everything. Having other people around who don’t know me or our family should give him a new perspective.

I wish I had more to say, more information to share, but that’s all I’ve got. I’m sure we’ll all have new information soon… we just need to wait (and I’m not good at waiting). In the meantime I’m so glad Colin’s found a place!!!