Day 27: Somewhere

My view of the world

Day 27 – Tuesday, Nov. 27
“I bet you didn’t know….”
OR
“If I could go anywhere…”

If I could go anywhere, then I would go somewhere. It doesn't have to be Machu Picchu or the Taj Mahal or Aluru. I would go to the seaside, that's half a mile from here. I would go to the cinema to watch a movie with my husband. I would go for a nature walk. It wouldn't have to be a long walk. Maybe just a half hour. I would go to the train station and buy a ticket to London for a day trip. I would go to the shop on the corner and buy milk when we've run out. 

I spend my life in bed, and the closest I get to seeing the world is from the windows of the taxi as I go to doctor appointments. My wheelchair doesn't let me in to many places, and even when it does, it is so uncomfortable, and sitting up makes me so tired. Sometimes, I just ache to see the world. I'll sit at the bedroom window and look out at the street and the flats nearby. There isn't much of a view. Sometimes there's a cat in one of the windows, or someone walks by with their dog. For all that, it's a far better view than I used to have out my window, in the old basement flat.

If I could go anywhere, I would go somewhere. Just somewhere.

#NHBPM

Day 25: The human voice

I don't have anything to say about today's prompts, so instead, I'm writing about audiobooks.

I love to read. My mom says I taught myself to read when I was 2. I don't remember that, but I do remember trying to read after bedtime by the light that came in under my bedroom door. I devoured all the books we had in the house, to the point where once, when I was perhaps 8 or 9, I got hold of a murder mystery book that was well above my age level! I had picked it up expecting the normal Nancy Drew or Hardy Boys mystery, where jewels might get stolen but nobody actually gets killed! That book (A Stranger is Watching by Mary Higgins Clark) traumatised me, but I couldn't put it down until it was finished. I highly doubt my mother or father knew I had it, or they surely would have taken it from me.

I used to read fast. I couldn't stand to put down a book before it was finished. Now, things have changed. If I finish a book in one night, I'm quite likely to push myself into a flare. It's easy to think that if the body is inactive, we're conserving spoons, but brain activity burns calories just like muscle use does. Reading can be tiring. I know I've read too much when I realize that my eyes are scanning the page, but my brain isn't parsing the meaning of the words. 

Enter audiobooks. Listening to someone read a book slows the experience down. It makes it possible to close your eyes and really focus on the material being read. It makes books accessible for people who are unable to read for themselves. It is also a wonderful way to experience books even if you aren't disabled in any way. Unfortunately, audiobooks are also expensive. Except when they are free.

What, free? Yes! There are three ways to get free audiobooks. The first is librivox.org, a website where volunteers record books that are in the public domain. You can find over 6000 works there, in different languages. You won't find the latest bestseller, but so many beloved classics are there. I like Jane Austen to listen to at bedtime.

But what if you want to hear the latest bestseller? Then you have two options. The first is your local library. Even if you can't get there, they may have a service to bring materials to disabled people in the community. 

But the third option is my favourite. It's to get someone you love to read to you. Or if you feel well enough, read to them. Some of my best times with my husband are when we curl up on the bed together at night and he reads a chapter or two to me from one of our favourite book series.

There's just something magical about the human voice. I love it. Don't you?

#NHBPM

Day 7: The Waiting Room

Day 7 – Wednesday, Nov. 7
Redesign a doctor’s office or hospital room

I'm going to redesign the waiting room, because I end up spending more time there than I do actually in the doctor's presence. And it's because of the waiting room that I end up being extra fatigued for days after seeing my GP. 

The problem with waiting rooms is that they aren't designed for sick people. The waiting room at the GP is no different than the waiting room at a government office. Both offices should be disabled accessible (but often aren't), but only one should be designed for sick people. And it isn't.

First of all, let's address accessibility. Wheelchair spots. Where the heck am I supposed to park myself when the room is so full of seating that all the open spaces will block foot traffic? What the heck is up with that? Do you think disabled people don't go to the doctor? What the hell? I expect accessibility when I see my medical professionals! Get it right! The seats are never all full. Move some of them out of the room to leave room for the disabled folks. (And hey, moms with pushchairs too, but I'm not in that category myself.)

Now let's talk about sick people. Not just sick people, but really sick and feeble patients. How about a separate room for the really feeble people who aren't really strong enough to sit up? A room full of recliners, or beds or at least some sort of ability to become horizontal. This room for the very feeble should have noise restrictions. No shouting children, though quiet children are okay. The lights should be dim and the stimulation levels low. This room would be for people with migraines, ME, flu, or any other illness that leaves you shattered and weak. Yes, I know that some of the other people in the waiting room are sick too, but there are different levels of sick, just as there are people just in to have their kids vaccinated or their smear test, and these people are not weak. It's us weak people who need a place to rest while we wait.

It's dreadful going to the GPs office these days, simply because of all the time I have to spend sitting up when my body is not healthy enough for that.  I'd love to be able to lie down while I wait. Do I expect it to happen any time soon? No. Not at all. It's just a fantasy.

#NHBPM

Discrimination Against Service Dogs

A story from Bensalem, Pennsylvania.

 Dr. Priya Punjabi argues that it is her right to determine who enters the property and that a large animal could scare or upset her patients.

...

Punjabi, who said she is afraid of dogs, added that her request was polite.
“We simply asked him to step outside,” she said. “I have my rights and my phobias, too.”

We still have so far to go.

Source

The Compromises We Make

I did something today I thought I'd never do. I bought microwave popcorn.

I love popcorn. Love it love it love it. But I like it popped on the stove, preferably in coconut oil. Microwave popcorn I always considered an abomination. But because of the effort of standing by the stove, I haven't made popcorn in months. Even after social services got me a perching stool to assist me in the kitchen, it is still a large effort hurdle to get across, compared to three minutes in the microwave.

It's not bad. I didn't think of adding seasoned salt to it, or shredding cheddar cheese over it, this time, but that will probably help. (Since I need to lose weight, I probably should continue to forget the cheese option.)

I've made compromises, but this is a line I thought I've never crossed. But what the hell, it's a tasty line. ♥

Adapting and Finding Help

When I first got sick, I kept trying to do things myself. This resulted in FAIL. I tired myself out, and most of the stuff didn't get done. I've learned since to evaluate activities carefully.

• Does it need to be done at all? A lot of stuff that used to be essential in my life has gone away. Some of it is missed, some not.
• Can it be done easier? This sometimes can mean getting equipment that helps in performing the activity, such as a tumble dryer vs a clothesline. Or simple things like putting a chair by the bathroom sink so I can sit while I brush my teeth. Removing clutter and arranging your home to make day to day life easier is also a possibility.
• Can it be done online? I do the bulk of my shopping online, including groceries. In the UK, the major grocery stores all deliver, and there is a milkman with free delivery who can top up between visits. I use the internet to buy clothes, books, household products - pretty much everything. It is very rare that I need to physically go and purchase something. I also try to do as much of my communication online as possible as I find it much easier to type than to speak.
• Can it be done by someone else? Since becoming sick, I've had to hire someone to do the household cleaning and someone to walk the dog. There are mobile hairdressers who will come to your house to cut your hair, mobile vets who will make house calls, care services who can assist in personal care that you can no longer do for yourself. I'd also put in this category using a cab if you can no longer drive safely and are unable to use public transportation.

I've started a list of links on the side of the resources I have found, in my three years of illness, to be the most helpful to me. Those that are specific to the UK, I have flagged as such. I hope other people will gain as much from them as I have.