Alone Time

One of the greatest worries I had when considering going on disability was time. I’m the type of person that is always doing something. Working, naturally, took a lot of time. So, what would I do for those now free 8 hours a day? This question haunted me more than finances, EDS, and building our house. (We were just at the beginning process of selling our house, moving to a rental and breaking ground for the new house.)

That’s saying something. It worried more than all those things combined. As my window of things I can actually do was slowly sliding shut, what would I do instead? Nearly everything I like to do involves some type of physical ability. Hiking, fishing, camping, birding, gardening, horses, you name it. To some degree you have to be able to use your body.  Yes, I’ve adapted. As I tell those people who ask me why I bother to do 10 extra steps just so I can fish; ‘You adapt, or you die. That is the nature of things, and personally, I’m not ready to die just yet.’ or ‘What other choice is there? Should I stay home 24/7 and stare at the blank wall?’ But it is very hard to replace the things you’ve enjoyed, even harder when you have no idea what to replace it with.

After I was done working, honestly it took me a very long time to just recover. I don’t think people understand just how draining a job is on someone like me. I try perhaps too hard, to appear normal. I don’t complain constantly about the pain I’m in, or ask for a lot of help. I suppose it is partially because I’m stubborn, but also because who really wants to be different in that way? I knew I was exhausted, but I didn’t realize just HOW exhausted I really was. The first month or so my daily routine was; get up with David and make breakfast; go back to bed; get up around lunch time, do some Yin yoga and read or watch a documentary; fall asleep on the couch; get up when David came home from work and make dinner; spend time with him until it was bedtime. Collectively I think I was averaging about 15-16 hours sleeping. Which is impressive, because normally I can’t sleep in long sessions, the pain just gets to be too much and I have to move around. I think I was just to that point of exhaustion where the brain overrides every other thing and makes you rest.  Gradually I worked out of it and assumed a more normal day routine.

I spend roughly 10-14 hours of a day alone, that is the average work day for David. I rarely leave the house unless I have a specific purpose. Doctor appointment, grocery store, etc. So there are times where I do not physically leave the house for 6-7 days. That is a lot of alone time. I still need naps, but not nearly like I used to, so most of the day I’m up. What to do with that time? That’s the question. I hear people say things like ‘when I’m retired I’m going to …..’.  Okay, but most of those things are things assume you are physically healthy. What if you aren’t? If you had asked me 10 years ago what I was planning to do when I retired, I would have said fishing, hiking, camping, traveling, etc. Wheelchairs don’t ‘do’ hikes. Traveling is very hard on me. A week of vacation usually requires a week of bed rest and extra pain meds at home. Besides, David still works, so our travel is limited not only be funds, but vacation schedules. I cannot physically managing fishing alone, I have to have David’s help, so it is limited.

I’m still working on this question. Trying different things to see if they fit and are workable. The bad thing about new hobbies is that they all cost money. I’ve started drawing again, and dabbled a bit with painting. I can’t go at it full tilt because it’s just too costly. One tube of a decent quality oil paint costs between $6 and $18.  One color. Not to mention brushes, canvas, and cleaning supplies.   I do still use my camera. No longer on hikes, but instead focused on the bird feeder area. I have increased my bird feeder area, though it was through a lengthy discussion and compromise with the hubby. He hates the mess, and thinks it attracts mice, so I don’t use traditional feeders now. Just suet, hummingbird, and orioles. Still, it’s another expense, even if it’s not a large one. Knitting is an addiction, I think, and yarn is the drug. I’m glad I learned, however, because it is helping me to maintain my hand/finger dexterity and forces the brain to look at things differently.

I had started to feel like my brain was going mushy, not engaged enough, and frankly bored. I’m not a huge tv watcher, a few shows I really like, but for the most part the tv is off all day.  I read a lot. I use ‘One Hundred Free Books’ to find titles for free.  Mostly new authors, some are good, some a great, and some get deleted. Can’t complain, they are free. I read a lot of science and medical journal sites, it helps satisfy my natural curiosity some. I started playing puzzle type games. Just to make my brain actually work at something. When they stop being challenging, I move on to another. Then I found ‘Corsera’. I’ve taken several of their online, free classes and have really enjoyed it. I’ve got another one starting soon, about Fantasy and Science Fiction in Literature. Quite a lot of the required reading list were things I’d never read. ‘Dracula’; ‘Herland’; ‘The Martian Chronicles’. I like to push myself outside my comfort zone, just to make the brain work harder. Nearly all the required reading list came with links to free e-copies of the books, so it wasn’t that big of an investment.  Sure, I’ll likely never actually use what I learn, but that isn’t the point. The point is keeping the brain up to speed.

Then of course, there is this blog. Still feeling my way around it and not sure how to make it a part of my routine. I do enjoy writing, so I’ve started gathering information and taking a few classes on it. Perhaps some day I will actually publish a book. Who knows?  I have modified the garden so that I can still do some of it. I do enjoy gardening, eating food you’ve grown yourself is just a perk. I like being outside, getting in the dirt, being around the birds. Quite a few of the birds are so used to me now that they just go about their business. Except the hummingbirds. Those little jewels are a delight. They are so comfortable now that I’ve had one or two land on me and come up to get a drink straight from the jar I’m holding when I go out to refill the feeders. So much energy and feistiness in such a tiny little body. We’ve had our first ever Eastern Phoebe nest under the deck this year. What a delight they have been! They eat bugs by the hundreds. Last year we had problems with wasps building their nests in the gaps on the windows.  The Phoebes have taken care of that and other bad bugs.  Between the hummingbirds and the Phoebes, no mosquitoes!

Well, I just received a shipment of new Penstemons. We lost a few of the plants due to the long, wet, and cold winter, these are their replacements. This one is ‘Red Ridinghood’, named for its bright red flowers. The hummingbirds and bees adore the other two varieties we have, ‘Dark Towers’ and ‘Snow White’. I need to go get them in the ground, which means I’ll be down most of tomorrow, but hey, it’s fun.  

Anyone that wants to weigh in on what they do or how they found ways to do what they love while on disability, please do. I’m including links, if anyone is curious about anything mentioned here, just comment or send me a message. Thanks for reading!

One Hundred Free Books

Cousera

How Stuff Works

The wide and weird world of disability fashions.

Hello all!  Today I’m going to do something I rarely do, and that is talk about clothes.  I’m not a fashionista by any stretch of the imagination, mainly because I just don’t care.  I prefer form and function, comfort and longevity, over in style and trendy.  That being said, one of the things that has absolutely driven me nuts since I first sat in the wheelchair is shirts.  Yes, shirts.  

You see, in a wheelchair your point of view changes. What was once a slight v-neck is now very cleavage revealing. You have to reach for everything, bending again and again at the waist. This often results in a ‘crack’ problem, as shirts are not long enough.  Throw in poorly made, thin, or delicate material and you have a problem. It is especially bad with office attire. Since I don’t work anymore, let’s focus on casual wear.

A few years ago, extra long tank tops came into fashion as layering pieces. I was ridiculously happy about this. Not because I layer, which I do but not for fashion reasons, but because they are actually long enough to keep my rear covered when bending and reaching. Only to a point, however. I soon discovered that they have a tendency to bunch up after repeated reaching. This left me doing the reach and pull the tank down routine, which is frustrating when doing something like grocery shopping. So I was off on a quest to find something that would work.

Here enters a commercial, seen while on vacation not long ago. The Duluth Trading Company was airing an ad for ‘extra-long t-shirts’ they called ‘Long Tail’ and ‘No-Yank’ tank tops.  I watched in fascination and pulled out the tablet to look them up immediately. They have them, and in my size.  Problem was, they were a bit pricey.  Now, here is a trick I’ve learned over the last few years. If this happens to you, create an account and put the item or items in your cart and then leave.  The company sees this and apparently it drives them nuts because before long I usually receive an email that makes it worth the extra wait.  In this case, it was only a couple of weeks before I received an email proclaiming the ‘Long Tail’ t-shirts were now only $10, and the ‘Women’s No-Yank tank were mix and match 3 for a lower price too. Top that off with a code for free shipping and I’m sold!  Yes, I know this is marketing by the company, but since it works in my favor, why not use it?

As of this date, May 20, 2014, they are still on sale.

Duluth Trading Long Tail T-shirt

Duluth Trading No Yank Tank

So I ordered and waited, afraid to get my hopes up. I had read the rave reviews that said they were good quality, but you never know until you open the box.  They arrived in just a few days and I was impressed. They are made very well and with good quality. I wore one of the tanks  the next day and it was so nice! It really is a ‘no yank’ tank! It fit well, true to the size chart, which is always a perk. I wore one of the t-shirts the next day, while grocery shopping. I am in love.  I wish I could toss every t-shirt I own and replace them with these, you know, if money were no object.  Since money is an object, these will be treasured, only used for trips out in public. But, oh!, it is so nice to wear a well made, good quality t-shirt that actually fits and is long enough!

So, there it is, my contribution to the wide world of fashion, so to speak. I don’t think anyone in the industry really considers people with disabilities when they design clothes, which makes it extra special when you find something that works so well.

Thanks for reading, any thoughts, comments, suggestions, or contributions are welcome!

TH

The importance of touch and the effect on people with disabilities.

Not long ago I was reading an article on the children raised in orphanages overseas. (In a particular region, but the study applies to all children.)  Researchers were baffled when the children, most aged 2-6, were adopted by parents in the United States and not only failed to adapt but showed highly antisocial behavior. Investigation discovered that these children had been left in cribs from the time they were received in the orphanages to the time they were adopted. They had a bare minimum of human interaction, only basic diaper changing,  handed food, and not allowed to play with the other children. As a result, the children had not been touched, skin to skin, during the critical developmental ages. Without touch, the children were unable to form connections to other people, and unable to bond with anyone, including their new adoptive parents. Some of the resulting behavioral issues were so severe that some parents were forced to return the children. The conclusion was that skin to skin contact between a child and a caregiver is crucial to the child's future ability to form bonds and relationships with others. Seems kind of like a ‘duh’ factor, in some ways. Breastfeeding is designed to have touch and eye contact, as is bathing and diaper changing.

My curiosity was roaming around and it occurred to me that this effect can be found in adults. How many of us know someone or are someone that is very isolated, either by choice or necessity, and does not receive a lot of human touch? People that are single and live alone for many years tend to start having odd quirks and behaviors.  I’d always thought that this was probably due to not having another person around to act as ‘check and balance’, to tell you that something was weird, or you were being rude, etc. With no one to buffer and guide our behavior, we don’t notice that it is slipping outside the norm. They often seem highly self-centered, which I think comes from having no one BUT themselves to care for/about, and not necessarily narcissism.

Granted, this is all pure speculation on my part, but you have to admit it’s interesting to consider. Does, like a child, the lack of touch help to drive an adult to more anti-social behavior? Lead to depression or an increase in depression? Negatively impact a persons ability to cope with stress, pain, or injury? I tend to think it does. We are hard wired to need touch. How many times have you heard an person that is semi-isolated or isolated say they had a massage and felt SO much better afterward? Or a physical therapy appointment?  Isolation itself has been studied repeatedly as a contributing factor for mental issues.  But what about touch?

Perhaps social media does help alleviate the mental feeling of aloneness, but it does not help with lack of touch. Is that why some people find social media to only be moderately helpful? It creates a connected isolation? How would someone that is isolated in this way go about giving and receiving touch? Obviously, massage involves touch but it is often expensive and not covered by insurance, making it out of reach for a large group of people. Myself included. I am lucky, I have a loving husband and am not isolated from touch or interaction with him. The rest of the world is a different story. Other than social media the only people I talk to on a regular basis is my children. When it comes to touch, it’s very limited. Doctor appointments and haircuts are all that really come to mind.

Which brings me to another issue for those with disabilities. Touch is often painful. I remember my youngest, always the hugger, getting her feelings hurt because she didn’t understand that her hugs were painful for me. During flare ups, I can be so sensitive that I don’t even want to sit near someone or hold my husbands hand. Widespread joint pain can be such a painful thing when the weather changes, or I’ve overdone it cleaning or sometimes for no real reason at all. So how does a person tackle that? I suppose we each have to find our own way, but it seems to me that just asking someone to hold your hand because you need a human touch could be horribly misconstrued.

Perhaps the medical establishment could put their two cents in on the issue and recommend to insurance companies and the medicare board that massages be considered a vital treatment for those who otherwise are isolated from touch? Most massage therapists that I have been to or been friends with are very flexible to the needs of the person and have a deep understanding of pain and it’s related issues. Could a regular massage appointment truly help someone that is otherwise isolated from touch? Is there a chemical reaction in the brain that happens only in response to touch, and it’s absence be the trigger for increased sensitivity to pain?

Where do pets figure into this picture? There have been studies that show petting a cat or dog can lower blood pressure and reduce stress hormones. Can a pet replace human touch? I don’t have a dog or a cat, so I can’t weigh in on this one. I do have parrots and I can say that it is nice to sit and pet them  (or give them scritches, as most parrot parents call it). I would think that with the depth of bond that can be seen between humans and pets, that it could have some impact on the human touch side. Can it replace human touch all together? I don’t know, and would be interested in insights from those that do have pets.

Again, this is just my mind roaming around, kicking a ball of thought to see where it lands. There could be studies out there on the subject that I have just been unable to locate. I would find it interesting to hear other’s thoughts and experience on the subject. Please, answer any or all of the following, and add your two cents!

Do you consider yourself isolated or semi-isolated from touch?

Is being isolated from touch a factor in:

Pain perception

Depression

Stress management

Overall attitude

How does touch affect you? Do you find it comforting?

If you have had a massage, did it help you cope with your regular symptoms?

Do you have a pet that you regularly pet? How does it affect your feeling of isolation from human touch?

Thanks!

TH

Handicap Accessible Home- Exterior motives

Disclaimer- I am not an Engineer, Architect or trained designer of anything. This series of Blog posts is intended solely for informational purposes, not educational.

Once all the footings and foundation is set, framing commences.  We covered that in the last post, so today we will discuss finishing up the exterior.

Once the framing is set, the exterior should be wrapped. Wrapping creates a barrier between the plywood and what ever  you are using for your exterior. Wrapping helps with many things, like energy efficiency and moisture control.  There are several brands available and each contractor usually has his favorite. Just make sure the one he uses meets your standards. Tyvek is a very commonly used brand, click the link for more information on it.

Tyvek House Wrap by Dupont

Once the wrap is up the bricklayer came and started laying the brick work. Since our house is all brick, it took him weeks to finish. The decisions here are again, personal choices. Window ledge styles, brick patterns, arches over doors, etc. All personal choices. At the time we were building the trend was for stone pieces to be put down the sides or on the windows.  It’s not a bad looking idea, but it is one of those trends that will date the house permanently. Thirty years from now someone will drive by and know that this house was build within this 10 year span.  Kind of like the Harvest Yellow or Avocado appliances of the 80’s.  At least you can change out appliances.  You cannot change out brick work very easily. So we went with simple design and a neutral brick color, grey.  Naturally we have the only grey house in the subdivision. (lol)

The best Handicap Accessible advice I could give would be to remember and monitor the choices you have made as it is happening. I was gone for a week or so during this process, when I returned the first thing I noticed was that they had poured the concrete slab for our garage and our concrete deck, and left a lip. I stopped the contractor and asked him why he had done this, he said ‘that’s how it’s done’.  No, no that is NOT how it’s done for a zero threshold house! On top of that, he also failed to consider the ¾ thick hardwood floor that had yet to be installed. This created a lot of extra work. Short of tearing out the concrete and repouring it, there weren’t many options to correct it. He had also failed to realize there would be a height difference between the main area hardwood floor and the bedrooms with their carpeting. A ¾ inch lip between the hardwood and the carpet may seem trivial, but when you are going over it day after day, the wheelchair will destroy that lip as it goes over it. In the end we had to put another full layer of ¾ inch plywood flooring in all the bedrooms and bathrooms to raise them up and make it flush. That was about a $600 fix that shouldn’t have happened. For the transitions to the concrete garage and deck, well that was not as easy. In the end, the floor guy made a sloping hardwood ramp to correct the garage difference, another $350 expense. For the two doors leading to the deck, they installed wood pieces to raise the door threshold up to meet the floor.  Not an easy task as those doors came pre-assembled and in the process they broke one. That was an additional $500 expense.

We’ve discussed windows a bit before, but here we are again. Choices in windows are more numerous than one might think.  As I stated before, we chose to use casement windows with no ‘pane’ inserts so as not to disrupt our view. We also chose to have many of them as ‘fixed’; meaning non-opening, because we live near train tracks and fixed windows reduce vibration noise.  It also reduces air leakage, making the house more energy efficient.  At this point, I can manage the crank outs on the ones that open, should I want or need to. We opted for a nice brand and grade of window because of the warranty, yes, but also because buying a window with a cheaply made casement crank would render the window unusable in time.  Surprisingly, prior to the start of framing we spent nearly a full day deciding on the height of the window, the measurement from the floor to the bottom of the windowsill. We chose large windows (again, for the view) and set too high they lost some view to the extended roof, set too low to the railing on the deck.  We also opted for a tint coating. In certain ways I’m really glad we did, it keeps UV rays from doing a lot of damage to the hardwood floor, helps keep the house cooler in the summer, etc. A drawback presented itself soon enough, however, as it also keeps my plants from receiving the sunlight they require. Not so good for my kitchen herbs.

You should have already decided, with your contractor and the plumber, the placement of exterior water spouts. This again, is one to check up on. Things get forgotten as the sub-contractors move from job to job, so a quick refresher isn’t out of line. They should already be in place, making it easier for the bricklayer. The same is true for external light fixtures, plugins, light switches, and dryer venting. All should be pre-decided, but checked on to ensure accuracy.

Before the bricklayer reached the back of the house, the deck was installed, or rather it was poured. We opted for a concrete deck. It added expense, yes, but we felt it was a logical choice for us for many reasons. For one, we live on a hillside over looking a river. there is no protection from sun, wind, rain, hail, snow, etc. other than the extended roof. Wood would have a hard time standing up to that beating. Wood would also require yearly maintenance, or possibly even more frequent treatments, to stand a chance of lasting at all. Honestly, who does that? Really, admit it now, how often have you had your wooden deck maintenanced as intended? As we age, or desire to do things of that nature is even less than it was in our youth, so a concrete deck headed all of that off at the pass.  With concrete you can just spray it off as needed. Pretty simple.  Personally, I didn’t want a wood deck because I hate the ‘thump’, ‘thump’ of my wheelchair wheels when I roll over it. It’s annoying, and as wood expands and contracts it can be a pain to navigate. We also chose to go with a powder coated aluminum railing, they are stronger than wood and again have the benefit of low maintenance. I know it doesn’t seem that important, but I thought it was. My chair, being electric, is very heavy and it has a fairly powerful motor to push that weight around.  The chances of me running into the rail are not very high, however I do have grandchildren. More than once it has happened that one is in my lap and reaches over, grabbing the joystick. So, I’m an ‘ounce of prevention’ kind of person. If that should happen on the deck, I want a railing that is strong enough to stop the chair. Wood wouldn’t stand a chance.  

That’s all for now. Thanks for reading. Comments and/or suggestions welcome.

TH