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.

October musings…

Yesterday was weird… just weird enough to keep me off kilter. First came the cancellation of my Nordic Pole walking class, five minutes before I had to leave. Then I got a call during the walk to my Social Recreation group from my psychiatrist’s secretary. The doctor was going to be on-call the day of my next appointment, could I switch to having an appointment at 4pm that day? Sure, that was fine.

The group went well then I got to the psychiatrist’s office and he asked me if I’d done the blood work for my lithium levels. I hadn’t because my lithium and clonazepam stopped coming last week, the day before I was going in for the blood work. I’d called the drug store and they told me they’d been faxing my prescription to the office and hadn’t got a reply. The psychiatrist’s receptionist said nothing had arrived and to get them to send it again. The doctor was furious. He checked his faxes every single day, several times a day, and nothing had come in for me.

That was when Colin called to say my IUD had arrived but my blister pack of meds hadn’t. I was now completely out of medication with no warning. The psychiatrist immediately called the drug store who, as far as I could tell, didn’t have much to say. He then wrote me a prescription with 30 refills, which he said should last me a while.

I got home and checked the mail. Colin’s disability pay stub arrived but mine hadn’t. Of course my mind went to the worst case scenario. What if I’d been kicked off disability with no warning whatsoever? Never mind that I’d been assured by my case manager that never happens. But what if it did? It was too late to call the office, I just had to wait until morning and see if the money got deposited into my account.

Of  course we had to drop off the prescriptions at the drug store, which is when I was informed that I hadn’t run out of the rest of my pills, they were merely on hold while I was in the hospital. Umm… what? There was a bit of confusion but they finally understood that I hadn’t been in the hospital at all and the hold got removed from my file. Thankfully the pharmacist was willing to make a new blister pack for me although it would take two hours. We wandered around stores for as long as we could and had just got home when I got the call to get my blister pack. Luckily that went smoothly and I was soon back home and ready for bed.

I woke up this morning and my disability hadn’t been cancelled (phew). I chatted with Kait for a while, got Colin up, then Colin and I headed out for a big shopping trip. We were aiming for over $200 in groceries so Colin could get a gift pack of Knorr products. We got $300 of groceries instead, which was super fun for Colin to pull home (not). He was thrilled though because he earned 6,000 PC points ($6) toward free groceries.

Colin walking the wagon home

It might not look like much but there’s a huge bag of kitty litter, a 48 pack of canned cat food, and a big bag of cat food. Plus all our food in various places including in two baskets.

I got the groceries stuffed away then went back out for our bus passes. Thankfully a friend told me they were still accepting October’s disability stubs so I was able to get mine too. Darn mail strike!

Two young men, college students, got on the bus home right after me and sat across from me. They didn’t go far and, as they left, I noticed one of them had lost his bus pass/student card. The driver stopped when I asked and, I asked if he’d wait for me while I gave the young man his pass back. The driver informed me that, no, he wouldn’t wait. He was on a schedule. Which meant I’d have to wait another half hour for the next bus if I got off. So I settled for leaning out the door and yelling at the students while waving the pass. They ran over to get it while the driver grumbled that he guessed he had to wait after all. Yeah, and I guess he’d never had to retrieve something from the bus depot on the other side of town, especially something as necessary as a bus pass. The student was grateful at least and I was glad I noticed it in time for him to get it back.

And now it’s time to snuggle up in bed. Tomorrow’s a new day and a new month and another fresh start.

born to be awesome

Ghosting through my day…

I feel… odd. No other way to put it. Off center… off kilter… I feel like a ghost drifting through my own life. This is my room, with all my belongings, but they don’t feel like mine and I don’t particularly feel like me. I’m sure there’s a lovely, long, technical name for this. Whatever it is, I don’t like it.

I’ve got too much energy today to sit but not enough to do anything and not enough focus to read. I almost feel like clawing off my own skin, as if I were a cocoon and there’s a butterfly underneath. But there isn’t and I won’t. My skin itches and crawls nonetheless.

Last week I got a letter from ODSP (Ontario Disability Support Program) saying I’d been accepted. The next day I got a notice from EI (Employment Insurance) saying I’d reached the end of my 15 weeks of sickness benefits. At the time I figured that was good timing and gave my worker a call.

Just bring the paperwork in so we have it for our files.

Alrighty then. It was a beautiful day so I printed out the papers and we headed off. I brought a 15% off coupon for a nearby organic restaurant too, figuring we could get a snack. The two were near each other and Jeremy asked if we could walk. Sounds great. We had to pass a huge aquatic pet store, a place I’d take Jeremy and Emma when they were little… pretending it was an aquarium. Jeremy wanted to go in.

We left that store with four little frogs, two “on sale” tiny aquariums, and me wondering how such small purchases could add up so quickly. It seemed like a good idea at the time, I’ve wanted a pet frog for years, but the cost was staggering. I almost told the cashier to put it all back but I’d feel guilty for wasting their time and Jeremy was happy. At least the frogs were relatively long lived, with a life expectancy of five years.

The first frog to die was Jeremy’s that very night. Then one of mine. The last of mine died last night and Jeremy’s remaining frog doesn’t look healthy. It’s only a matter of time. It hasn’t even been a week. There is a return policy but you have to bring back the corpses and I’ve flushed them. I couldn’t picture keeping them “on ice” in the freezer beside the Gardein Porkless Bites and the frozen kale. Maybe I’ll get a Siamese fish so I’ve got something to go in the tank. What I really want is to go back in time and tell myself to walk past the store. Just walk on by… don’t go in. But time doesn’t work like that, even when you feel like a ghost.

And the paperwork wasn’t good enough, according to ODSP, so I had to go out on an almost freezing, pouring rain day to get more paperwork from EI and bring it in. The nice man in the office informed me that I could have printed everything out at home and that my worker should have known the paperwork was fine. ODSP says I can get more money from EI. EI says I’ve exhausted my claim. It would be nicer to get fought over if they both weren’t fighting over who’s not going to pay me.

Jeremy and I are going to walk a block to the store to buy pizza fixings. Maybe the fresh air will help reconnect me to my body.