I've learned a variety of management/coping strategies both
on my own, and from my therapists that help me right now, in a very practical
way. I decided to share a number of these
all in one blog; maybe others will share as well. I found they ended up in four categories:
1)
Feeling more grounded, 2) General management, 3) Electronic/tech help, and 4)
Venturing out. I've
included a few services I use that make a tremendous difference in my life. I also hope that by sharing this, anyone
reading this who doesn't have these
kinds of challenges gains some insight and/or understanding.
Feeling
more grounded:
1) Chairs on
wheels - place a folded towel on the
floor. Office chairs often are on
wheels, and if your floor doesn't have carpeting, the movement can be way too
much. I have a large towel folded in
half placed under the wheels of the chair at my computer. It still moves, but much less, and I feel
much more safe, stable and solid.
2) People often
move around when they talk. When sitting down, they bounce a leg, foot,
etc. I politely ask them to please hold
still, that the movement bothers me. If they are pacing, I ask them to please
stop. This is hard to do in group situations,
in which case trying to focus on whatever isn't moving can help.
3) Standing -
Touch a counter, table, wall, whatever is nearby. Sitting - I make sure if I'm
sitting down that both feet are flat on the floor. No crossing of legs or ankles. Again, touching furniture so you know where
you are in space is good. I'm a big fan
of Lumbar support pillows - I own three.
4) Out in public, letting
yourself sway a bit is actually OK.
A lot of people move a bit when they stand, and probably won't
notice. Going with the movement is
easier, I think, than trying to hold still.
Bodies are meant for movement.
5) Phone - when
I'm on the phone, listening in only one ear feels very strange...I do much
better when the sound is coming from both sides, so I use it on speakerphone. For personal conversations you'll want to be
in private, but I find it really helps to have the sound coming at me like a
real conversation. I tell whoever I'm speaking with that I'm using my
speakerphone. For non-personal conversations, the way people use their cell
phones these days, it's really not a big deal.
General
management:
1) I use a sleep wedge - I cannot handle sleeping
flat, and there are different heights depending on what you want. I have one that is about 7" and one
that's more like10". Not expensive,
and much easier to use, I think, than a pile of pillows which tends to move
around - very annoying.
2) Dimmer switches
- these are not expensive, and some may be able to get a friend or family
member to install them. There are some
rooms where we don't have these, but I find dimmer switches super helpful to
cut down on intense lighting when needed.
3) Nightlights
- it's much harder to navigate in the dark for me, so nightlights, or a long
lasting small fluorescent or LED light helps a lot. I also think during the winter when there's
less daylight, it's a mood lifter, which is good when you're dealing with these
challenges.
4) Taking breaks
- I don't like to just sit and do nothing, though sometimes I have to. What is a break for me may not be for someone
else. For me, sometimes I literally get
up and walk around the room, other times my break is doing a very different
task to change things up for my body. I
actually lie down and rest, setting an alarm, once in early afternoon.
5) Getting stuff out
of the dryer - I like to be able to either sit down or stand when I get
stuff out of the dryer. I have a basic
plastic stool with a folded towel on it.
I don't like standing on stools now, but it's an easy seat when I need
it.
6) I do a lot of cooking, so I try to cook in batches and freeze, make enough for
leftovers. Standing at the stove,
taking things in and out of the oven can be difficult. If you have the space, and don't mind
defrosting a freezer once a year, large freezers are inexpensive. It's just a big cold container. Well worth it.
Electronic/tech
help:
1) Google
translate is like hi-tech magic - I cut and paste a paragraph or two into
the box on the left, click on the speaker icon and listen to a female voice
read me the paragraph. There seems to be
a limit to usage before it needs a break, but I recently listened to a news
article for 20 minutes, and when it was done, I needed a break too :-) ! Anyway, I highly recommend this tool for
online "reading." NOTE: GT works in
other browsers, but better in Google Chrome.
2) Speaking of reading - again for online - you can
zoom a page to make the font larger, or cut and paste something into Microsoft
Word and then format it so it's easier.
I like short lines of text. For
regular paper, putting something on either side of the page sometimes helps, or
folding paper so you're not looking at the whole thing at once. This is a time when tunnel vision is good.
3) Listening to
books, etc. - most public libraries have audio books and you can listen to
the CDs on cd players if you don't (as I don't) want to be on your
computer. There's also a FREE service
called Choice Magazine Listening - http://www.choicemagazinelistening.org/
- you need to send a doctor's note saying why you need their service. Then you get a special playing device which
you can listen to with or without headphones.
It's VERY easy to use. The
cassettes that they send of short stories, poems and various articles - four times
a year - are USBs that are in special cassettes that you put into the
player. You get each one for two months.
Also, I highly recommend Illinois Talking Books - https://www.illinoistalkingbooks.org/ -
this is another free service. They are in other states as well. I don't think it's hard to have a doctor's
note that does the job, and they have a pretty extensive library of books. I use this service a lot - and people who
read the books do a wonderful job...they are the unsung actors and actresses
out there! I use the same playing device
as for CML.
Venturing
out:
1) My town - a northern suburb of Chicago - offers
discount coupons for taxis. They didn't
even look at the letter from my doctor.
I strongly encourage people to see what if any services are available in
their communities that may help.
2) Speaking of going out - I don't go to restaurants
very much, but when I do, I ALWAYS call ahead.
Looking at the menu online is helpful, but speaking with a manager to
make sure that having dietary restrictions met won't be a problem makes for a
much less stressful outing. I have had
glitches, but it's still worth it. If
it's a new restaurant, I ask about TV screens and ceiling fans. I can't tolerate either, so this is
important.
3) Haircuts - I've
written about this in more detail, but here are the basics: I don't get my hair washed there, I always
have my chair locked so there's no movement, and at my request, the ceiling
fans are turned off.
5) Solid chairs
and location. If you have a choice
of chair, I always go for the more solid, not-super stuffed/upholstered
kind. Sometimes this means speaking up,
or moving chairs around a bit, but to me it's worth it. Regarding
location - if I go to something, I think a bit about where I want to sit, rather
than just plopping in the first available seat.
I also think about what may be in my field of vision, and what I'll be
dealing with - is there something I can do to make it a bit easier on me? For example, sitting so I'm not looking at
passing cars, or moving screens. When I
attend adult education at our Sunday School, I like to sit in the middle in the
back. My view is more equal on either
side, and if I DO need to get up for a break, it's easier.
6) Fanny pack
- lastly, I no longer carry a purse. I
much prefer to have a fanny pack at my waist.
It's easy to access, and for balance having something at my waist feels
much better than having a purse slung over my shoulder. Fanny packs are not expensive - you can get
good, durable packs from outerwear/camping type retailers.
I'm sure I left some stuff out, and that someone else's list
would look a bit different. But it
would still reflect a lot of work, a great deal of effort. I'm struck by how
much there is to figure out in order to deal with these kinds of invisible
disorders. So we all need to give
ourselves a lot of credit for what we manage.
Great tips! Thanks!
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