Accepting the Extent of My Disabilities

Posted on by Astrid

Hi everyone. Yesterday someone in one of the online communities I’m part of shared about learning to use a white cane because of vision loss in addition to an acquired brain injury. The person summed up all the impairments the brain injury had already caused. This got me wondering how he’d be able to use a white cane, so I asked him. I won’t go into the conversation, but it reminded me how significant my impairments and particularly the combination of them are.

For example, I can’t use my white cane in the proper way without losing my balance. This isn’t even a new or semi-recent thing or so my best friend says: when I still tried to properly use my white cane over fifteen years ago, I fell far more often than I do now.

It doesn’t mean there’s no decline whatsoever. After all, everybody over 30 declines and I’m not one to regularly exercise other than by walking either. However, the decline is not as significant as I think (and have been thinking for, well, over fifteen years already) it is.

My best friend also says I used to have far more meltdowns at least in public than I do now. This may be related to the fact that now that I live in an institution the general public no longer has to put up with my meltdowns as much. However, I have an inkling this is not the full story, as I remember having daily meltdowns in the psych hospital, usually lasting several hours. I still have meltdowns regularly, but truthfully not nearly as often as I used to.

One of the things that may’ve contributed to my feeling that I’m declining as well as to my having fewer meltdowns, is the fact that I can no longer mask as well as I used to. Oh well, is it masking when my pushing through leads to severe aggression and other challenging behavior? I don’t think it is. Is it more that I can no longer pretend to be independent? That’s probably a better word choice.

I still try to push through more than I probably should, honestly. I have a very strong inner critic telling me that less support is always better, after all. Moreover, it tells me that I have absolutely no right to asssert myself because I’ll always be a burden regardless.

A few weeks ago, I had an experience that validated me in thinking that, well, I may be seen as a burden but that’s not my problem and it doesn’t mean I have no rights. I was trying to get onto care allowance (a compensatory payment for the cost of health insurance) now that I’m divorced and officially low income. However, as it turned out, my ex-wife was still listed as my partner in the system, so I had to call the relevant service. Well, the process of getting connected was already quite frustrating. Once I was finally connected to a human, it took three transfers for the right person to get on the phone. He then informed me that he couldn’t solve the problem right away but would be calling back later. I assumed correctly that he’d call me anonymously, so there wouldn’t be a way for me to reach him if I’d missed the call. Thing is, I need to use headphones when making phone calls because I cannot properly hold my iPhone to my ear and the speaker’s rather unreliable when the phone’s on my desk. However, since I don’t wear headphones when not using my phone and it takes some time for my headphones to connect, I feared he’d reach voicemail by the time I’d had a chance to pick up. I explained this, saying I have a disability and need to use headphones without going into too much detail about the why of it. He came up with the solution of calling a second time immediately if he was redirected to voicemail to give me more time. And guess what? It worked!

#WeekendCoffeeShare (April 18, 2021)

Posted on by Astrid

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?