Courage to wake and face the day essentially destroys me daily. Broken I rise and face the day resisting fear. Courage lives within.
I’ve been silent for a while now, and I just wanted to check in and let you know that I’m still here. Life is being difficult for me right now. I’ve not really settled into a routine, even though I’ve been home for about six weeks. Everything seems to be quite hard, and it takes me so much time to get anything done! It also drains my energy to even sit in a chair and fold laundry. My exercise program is especially exhausting, but it’s really my physical therapist who designed the program, so I just keep at it.
Anyway, just wanted to let you know that I’m hanging in here. Hopefully I’ll be posting a little more often. Trying to work out a weekly schedule that actually works out for me. Hope that you all are doing well.
Since coming home, I can’t do many of the tasks around my house (dusting, vacuuming, laundry, washing the floors, shopping, cooking), I’ve had some time to fill. Of course, some of that has time has been filled with visits from Health Aides, Occupational and Physical Therapists and Visiting Nurses, but not all of the time. So, I’ve been thinking about my life. Clearly, it’s not the same as it was on May 25th, so I’ve been asking myself how I want to change my life. What are my goals? How can I make my life better? How do I want to change and grow? What kind of person do I want to become?
Wow! So many questions and what are my answers? To tell the truth, I’m not completely sure, however I do have some goals in mind. Like most people, I’ve got short-term goals and long-term goals. And, of course, in order to even be able to dream about my long-term goals, there are some difficult short-term goals to meet first. Now that I’ve got my fancy braces and can walk with my walker much more competently, my short-term goal is to be able to walk with a multi-pronged cane. My long-term goal is to walk with no help what-so-ever. Will this ever happen? I don’t know. No one knows. So far, there have been no answers from any of my doctors. Is this frustrating? Oh yes! I’ve got many doctor appointments and tests coming up in the next few months.
Of course, I’ve been thinking of other ways to live this different new life. Another goal is to work more on myself. There are things that I can do for myself. Getting up and walking laps on my porch, working on my balance, lifting weights and using resistance bands have all been part of my daily routine since I came home. But now I will be adding some new exercises for my back, bladder and bowel. Yes, all these systems need to be strengthened just like other muscles. And, as usual, I want to make healthier meals to eat. The difficult thing is that I’ve lost a lot of my energy – because just walking around and being a person is taking way too much energy. Hopefully it’s because my body is healing itself. At least that’s what I tell myself. So, better meals are another goal.
So, these are a few of my goals. Will there be others? Of course! A few more have been knocking around in my head…organization, throwing unused items away, simplifying my environment, and becoming as healthy and strong as I can be. I’ll keep you updated on my journey through the woods.
What choices do we have when life takes an unexpected turn? Can we just wallow, or do we need to put the brakes on to avoid an even bigger wreck? Could we possibly ignore what’s happened and act like everything will be okay? Or do we truly have no choice and absolutely need to deal with what’s happened?
Some things can be ignored, but not all things. Obviously if you have a physical/medical aliment you really do need to deal with it. However, some people may feel the need to refuse to do anything, and let themselves just be…but if you do that, you will not get better and your life could end up going down the drain. Some people may decide to do that; however, this is not a way to find a positive outcome.
When I was in the hospital, I did get one call that I will never forget. A family member was telling me how terrible it was for him that I was numb from the waist down, unable to walk and incontinent – yes – this was terrible for him, not me, him. I was flabbergasted and had nothing to say in response. I hung up shortly thereafter.
Whenever I’m faced with such statements, I consider the source and ignore what’s been said. To tell the truth, I just tend to “get on with it”. My gut reaction is to do what I can, and focus on what I can do to get better. So, since I’ve been home for two weeks, I’ll tell you what I’ve been doing. I’ve been given a series of exercises by the physical and occupational therapists. There are three sets of exercises: balance (my balance is a little shaky at best); weights; and bands. Three times a week I do the balance and weights; and three times a week I do balance and bands. On Sundays I clean my bathroom and believe me, that’s a work-out in itself. I also walk laps every day, whether on my front porch, or around the first floor of my house. Since I just received my custom-made braces, I’ve added two more laps bringing the total up to 22. Just doing these exercises makes me tired. After all, I was lying in a hospital bed for almost three weeks and lost a fair amount of muscle. And, of course being unable to feel most of your legs and none of your feet makes balancing and walking an extreme sport!
I’m just letting you know that while being totally depressed by what I can no longer do, I’m trying to look at my life as it is now and make the best efforts that I can to get better. Obviously, I’m not all sunshine and roses, however, this is my life right now. The reality is that I wear diapers to bed and pull-ups with pads during the day. Life has gotten better since I’ve got myself on a bathroom schedule. Does it suck? Of course, it does! Have I figured out ways to make it better, yes!
The rest of my days are spent either going to various doctors, having fun and exciting tests done to me, or reading. My other major occupation is trying to figure out how to get stuff out of the refrigerator/cabinets and onto the table without spilling anything. Thank goodness walkers have baskets! I’ve also realized that I can cook – I made myself a squash, pepper, onion and rice dish for lunch the other day. I chopped, cooked and cleaned up after myself. Huge learning curve.
Whatever the circumstance is, there is usually something you can do to make it better. I’m working on strength, endurance and balance. And I’m not just talking about the physical aspects of these three things. Life in itself is a learning curve. And, it goes on. What we make of it is up to us.
I’ve been away from this space for a number of weeks. I’ve missed communicating with you; however, I’ve had one of those unexpected life events that’s actually been quite traumatic. I woke up on the morning of May 26th and within two hours I was numb from the waist down and unable to walk. I ended up in the hospital for a about two weeks where they gave me every test they could think of with no diagnosis.
After that, I was sent to one of the best Rehab places in New England where I’ve learned to walk (with a walker), and take care of myself as best I can. I am now in a Nursing Home/Rehab and will be going home on July 9th.
This has been a lesson in humility, patience and dependency. While in the hospital I had a catheter since I am incontinent with both urine and bowels. I’ve had to learn to ask for help, have various people take care of the most intimate parts of my body, and deal with helplessness. For someone who would rather die than ask for help, the learning curve has been extremely high. The saving grace for all of this is that everyone, and I mean everyone has been kind and caring. And, I’m at the point now that I can walk (with walker) to the bathroom and deal with my pull-ups (daytime) and out-and-out diapers (nighttime) by myself. It’s amazing how just going to the bathroom by myself has helped make me feel more independent. It’s been a huge step forward.
When I first got my leg braces, it took me an entire hour to get them on my feet. Talk about having your patience tested. By the time I left my first rehab, I could get both on in less than ten minutes. As an extremely impatient person, this learning curve was much too high in the beginning. Everything takes an amazingly long time to accomplish. And, it’s not only that, you’ve got to plan most things out before you even start. If I want to go to the bathroom, I need to make sure I’ve got everything I’ll need within reach, otherwise I’ll need to call for help. So, there is the planning ahead that you’ve got to do, and unfortunately organization isn’t my strong suit.
Learning how to use a wheelchair was another learning curve. Also, who really knew that it was really hard to push yourself around. In the beginning my back and arm muscles were extremely sore since wheelchairs are very hard work. It is fun though to do circles in the elevator and twirl around in my room, though, so there’s that.
Amazingly, there is laughter in adversity. Although at the hospital I spent part of each morning looking at the pictures I took of the hike that my puppy and I had gone on the day before this happened. Which of course made me cry and brought on depression. So, I’m on an anti-depressant now, and it is working. Also, the fact that I’m being kept busy with both Physical Therapy and Occupational Therapy is helping. I also exercise myself during the day. It keeps me busy and tired. Being occupied with good things is most important in avoiding depressing thoughts. If we can’t find the humor in adversity, how can we deal with it? I’ve always managed to eventually find something funny about just about anything, and thank goodness for that! I don’t know what I would do if I couldn’t laugh.
So, anyway, I just wanted to let you know what’s going on in my life. I’ll continue updating, and writing this blog, hopefully every week. I hope that your lives are going well and that your summer has been wonderful.
Last week I wrote about how the elderly are kept on the fringes of society through their poverty. Today I want to expand on that theme by invoking the book Nomadland by Jessica Bruder. I don’t know if you’ve heard of this book, but it’s been made into a movie recently and you can watch it on Hulu. Bruder, a reporter, spent years following and living with people – mostly the elderly who live in vans, cars and trucks while traversing the country in search of short-term jobs to supplement their tiny social security checks. These are people who have either lost full-time jobs due to age, economic down-turns, their jobs being made redundant, or perhaps ill health, along with losing their retirement pensions, health care, homes, etc.
Should you suggest that they just didn’t take care of their finances, understand the fact that wages have not kept up with the actual cost of living, and most jobs no longer provide for retirement savings. This van living is also related to some younger people choosing to buy and reside in tiny houses since they are unable to afford the price of apartments and/or renting a room in someone’s house.
My thought is that we have to rethink the way that we treat people in the U.S. So many people are underpaid, and considered not worthy of a living wage that it astounds me. When I worked after I graduated from college with both a B.S. and a B.A., I never made more than $17,000.00 per year. I couldn’t move out of my parents’ home as I was unable to have a car loan, pay car insurance and pay to share an apartment with a roommate. As a matter of fact, in order to have more money I cleaned houses on my day off. It was insane, and matters have only gotten worse in this country.
There is no such thing as un-skilled labor. The people-skills that are required to work in the fast-food industry are incredible. Not only that, but you also need to be able to handle extreme abuse from customers without reacting in a negative way. I wonder how well the rich would be able to cope with that. Cleaning houses, offices, or schools also all require skills. Skills are needed for every aspect of any job. I also worked as a cocktail waitress in an upscale bar/restaurant, and believe me when I say that I acquired many different skills in response to customer “handiness” and abusive behaviors. Walking a tight-rope between receiving a decent tip, and keeping abuse in check was quite a skill.
In America, we seem to only respect the rich, and supposedly everyone else is not due any respect at all. The sad thing is, is that the poor seem to disrespect themselves, also. I know that I blamed myself for my lack of reimbursement – and to tell the truth, still do. Why could other people get rich, and I couldn’t (can’t)? This is ridiculous, since most people who “get” rich began life being rich, or upper middle-class. Yet so many of us have done all the right things – went to college, got married, bought a house, had children and still have little to show as far as money is concerned. When I look around at the houses in my state, I can see that even though we may have a house, we can only afford to pay the mortgage, taxes and insurance on it. There are few homes that have been able to keep up with the upkeep.
People need to earn more. How do we do that? Maybe changing the “business model” that puts money into the pockets of business owners, stock holders and the rich. For an example, Jeff Bezos did not earn his 189.8 billion dollars himself. He does not work in one of his humongous Fulfillment Centers, nor does he walk at least eighteen miles a day there like his employees do. For that back-breaking work they make between $12 and $19 dollars an hour, while Bezos makes $149,353.00 per minute. The people who do the actual work need to earn a living wage. If minimum wages had kept up with inflation, it would be $24.00 an hour now. But federal minimum wage is still $7.25 an hour and has been since 2009.
So, while the rich have gotten richer, the poor have gotten poorer and the middle class has fallen into the lower middle class, and the lower-middle class has become poor, wages have not changed for twelve years. Twelve years! Everything else has gone up, but not wages. Most of us are barely holding on, and what happens when another Pandemic hits, or Wall Street collapses as it tends to do every so often? We need change, and we need it now.
Here in the U.S., we don’t like to talk about poverty, much less do something about it. Our social programs help only a small minority of the poor, and they often are accompanied by insults and mistreat. Does anyone remember Reagan’s “welfare queens”?
Another problem is that the “help” that’s given isn’t enough. Most of my elderly clients were receiving social security, but it was too little, so they also got food stamps and help for electricity. The problem with both these things was that one person would receive $75.00 per month for food – not much help at all since grocery prices in my part of the state are really high.
As far as the electric help, they had to pay $75.00 per month for electricity and if they didn’t, they wouldn’t receive relief – the trick to that was that their bill usually averaged only $50.00 a month. The electric company would collect the state’s money plus my client’s $75.00, thus making a tidy profit every month for every elderly person on this program. I saw bills that had an overpayment in excess of $3,000.00 on them (some of my clients were in their 90’s and had been on this program for decades). Needless to say, the electric company was obviously keeping the extra money and making interest off it. Why? I have no idea. The state was actually giving free money to the electric company. I don’t know if anyone in the government understood that. I did try to find out, but didn’t get a response.
So, did any of this actually help? Not really. Their rental was also on a sliding scale determined by what the state decided they could afford. Between food, rental and electric, they had absolutely no money left-over by the end of the month. One of my clients would sell a piece of jewelry every few months in order to afford car insurance. She hung onto her car because her family refused to take her anywhere.
Now, I ask you, is it necessary to keep people in extreme poverty? Would you be able to only spend $75.00 per month on food? Yes, you may say that they could get meals from Meals on Wheels, and many people did. However, these meals do not follow any dietary specifications due to medical conditions, therefore, they were unable to eat many of them.
Using this one example, you can see the poverty that these elderly people were kept in. Now, think about all the individuals who are making minimum wages (sometimes less if working in the restaurant industry) and how some view them. Have you frowned at or even disparaged people who have used food stamps? How about those who live-in low-income housing? Have you noticed what the outside of low-income housing looks like? Have you ever wondered why? These buildings are usually owned by slum-lords, if something is broken, it doesn’t get fixed. See piles of garbage around the already full dumpster? That means that the landlord hasn’t paid to get it emptied. Do the individuals living there have any control over these situations? Of course not. They are not the landlord.
So, millions of people, including children are being raised in poverty. Over the last 40 years, millions of people have been raised in poverty, still live in poverty and are raising their children in poverty. Look at the social issues we have as a country. Does poverty have anything to do with that? Of course. Now, imagine if we actually paid people a living wage. What do you think that would do to the social landscape of the U.S.? And, by the way, if minimum wages go up, the rest of the wages would also go up. This would mean less people in poverty. And, lest you think that the country-oh, sorry, corporations- would suffer – more wages, more spending. Yes, it does work that way. Something else to think about. If people were paid living wages, we would need fewer social programs. That money could be put toward education and the all-important – health care. Have you yourself not gone to the doctor when you needed to because of the high deductible that you have to fulfill before your insurance pays anything? Just think about how it would be if you didn’t have any insurance. And, don’t tell me how great the ACA is, they wanted my husband and myself to pay half of our monthly income for insurance, with a $5,000.00 deductible. Fantastic plan, right?
So, tell me, does the way we force millions of people to live in poverty make sense to you?
I haven’t been talking about what I’ve been up to lately, so I thought I should do that. We’ve been splitting wood and stacking it for our winter heat. It’s been fun (sure!), but thankfully we’re just about done. I love it when we manage to finish before the heat and humidity set in.
I’ve also been trying to Spring Clean, but since I’m doing this by myself, and it’s not my favorite thing to do, I’ve been moving so slowly that so far, I’ve only gotten one room done. While I know that’s better than nothing, I’m not too happy with myself, especially since I never Fall Cleaned last fall, either. So, we’ve got dust elephants instead of dust bunnies. Also, my house is full of crap that I’d like to get rid of, but we still can’t drop things in drop boxes yet. I do throw away the things that can’t be passed on, but a lot of my stuff is still useful. I’m just trying to get rid of the over-abundance of things that I no longer use or need.
So, I’ve got a question for you, do you also hang onto things that were once useful but no longer are? Sometimes it’s due to sentimental reasons, but mostly I find I’m just apathetic about the entire thing – except, of course when I’m desperately rummaging around in a drawer looking for what I really do use and need but can’t find because of all the things I keep but no longer use. Please tell me I’m the only one who does this nonsensical “thing” that drives me out of my mind.
Because we rescued a puppy (yes, I am insane), I’ve also got some puppy things that I really need to clean up and give away to a rescue. Since he’s a Boxer/Hound mix the bed, fencing, etc. that I bought when he was smaller don’t work anymore, but they were so lightly used (he grew quite fast), I’m sure that a rescue would be happy to use them, however due to Covid 19 no one will take these things yet. Hopefully that will change and I’ll be able to move them out of my computer room (where they are cluttering up the place)!
One of the most important things that I’ve been doing is reading the Mayo Clinic Guide to Fibromyalgia. I’ve been finding it interesting and full of facts that I didn’t know. There are also useful tools in there to help you live with a chronic disease. Hopefully I’ll be able to put a lot of this information to good use. It’s pretty much a how to guide to living the best life you can. If you’ve got a medical condition, I recommend that you see if the Mayo Clinic has a guide for you.
I’ve also started working out for real again. For real means that I’m doing it every morning, except for the days that I’m splitting and stacking wood – a body can only take so much, you know. However, since I didn’t do anything for quite a while, I’ve had to change what I do somewhat. Due to my foot issue, I’ve taken walking off my morning routine and just been walking with the dog – that gives me around 15 miles a week, so not bad. Then, I decided to up my weights by a whole 2 pounds! Whee! But, most importantly, I’ve been stretching daily, plus doing some yoga. I am so incredibly stiff that I have to modify a few things, but hey, at least I’m trying!
So, anyway, that’s me. Some positives and some negatives. How about you? Are you trying new things or getting rid of old things? Let me know. Maybe you’ve got good ideas that will help the rest of us, share in the comments below.
It takes an inordinate amount of courage to change. It’s easy to keep doing what you are doing, to continue on the same path; to keep dealing with the same problems, responsibilities and perhaps even keep taking the same abuse that you have been for years. Sure, you may question whether or not you can keep accepting the same unacceptable things day after day for the rest of your life; but the reality is that you understand this life, you can usually cope, and it’s comfortable, even though at the same time it’s soul crushing.
That’s the thing with changing – there is nothing comfortable about it. In fact, it’s scary, slow and hard. As human’s we do tend to cling to things that we know and are familiar with, instead of changing. And, once you begin to make some small changes, the people around you may not appreciate them. They may try to stop you, make fun of you, or insist that by making these changes you are offending them. This throws up another barrier between you, and the life you want to lead. Not everyone has your back, and some people may actually put barriers in your way when you begin to change what you’ve been normally doing.
The best way to prepare for changing is to really think about how you want your life to be. Not just the fuzzy, soft-light version of your daydreams, but the actual life you want. This is the hard part and it’s easy to get stuck in your warm fuzzy daydream. As an example, if you want to up your fitness level, research how to do that. Then make plans and goals to put what you’ve learned into practice. Not everyone can afford a gym membership, so look into weights and free routines from YouTube. I loved Denise Austin’s Yoga Essentials VHS from 1994 and used it until the tape broke. Now I use YouTube for the workout – yes, it’s old, but it does the trick.
With forethought, planning and some research you can be ready for the wrenches that will come your way. Because there are always wrenches. Don’t let other people block your progress. Set goals and if you run into trouble, look at what could be the problem. When my husbands’ snoring got so loud that I couldn’t sleep in the same bed as him, I first tried the couch in the basement – when that didn’t work, I used an air mattress, but that just kept losing air. So, as a last resort I tried the couch in the living room. With a little tweaking (adding a couch support system) it’s much better. Would I like a real bed? H*ll yeah! But that won’t happen until my grown son and his girl-friend move out. I’m not holding my breath, so I make do.
The hardest part about implementing any changes that I’ve found are other people. Negative comments can be the worst. While it can be difficult, focus on why you made your goals and keep that utmost in your mind. Also, don’t make plans that are inflexible. I recently bought myself my first smart phone and I had the volume on the alarm set too low so I wasn’t waking up at the right time I had planned to work-out. Since I work from home, I really wasn’t forced to only work-out at a certain time. So, I just worked-out when I woke up. It wasn’t what I had planned on, but keeping things flexible is an important aspect of change.
The most important part of this post is the fact that in order to change, you must stop just the daydream and create a plan. Good luck, and share how you’re doing that. We are all in it together.
It’s been a while since I’ve made actual goals which is the reason that I haven’t been very productive so far this year. However, now that it’s spring, I felt that it’s time to set some goals. Spring cleaning is not my forte. I’m sure that some people relish cleaning out the dust of Winter, but dust, unfortunately, has never bothered me – except for the fact that I’m allergic to it.
So, this year my spring goals are going to be pretty simple. I plan on cleaning as much of my house as I can. I’ve already spring cleaned the downstairs bathroom. This, of course is the smallest room in my house, so I thought that I’d start with something that had a guaranteed positive outcome. It’s good to start with a job well-done. I’ll probably work on the living room next since there is the least amount of furniture in there, and the only spot that will require the nasty business of emptying and dusting is the bookcase. There is another reason why spring cleaning is on my “I really hate it list” and that’s because my house is made of logs – logs with the bark still on them. So, I not only need to vacuum them, I then need to dust them with furniture polish (I use Pledge). This is a time consuming and extremely physical activity since I need to stand on a ladder to get all the way to the top of the walls. The ceilings also have the same kind of logs and wood, so I need to work with a dust-mop over my head – what an arm workout!
I’ll be doing the downstairs first in case I never manage to get to the upstairs. Of course, I only need to clean the bathroom, my husband’s bedroom (he snores so loudly that I sleep on the couch), and the hallway. But, again, lots of work. And, I’ll be doing this by myself since everyone else is off working outside the house. My plan is to do what I can without needlessly injuring myself – because – because I will be splitting and stacking wood soon. Yep, it’s that time of year. Doesn’t everything happen all at the same time?
Have you been setting goals this year? If so, good for you! If not, remember that you can start anywhere and anytime. Let me know what you’ve been accomplishing and remember, watching shows/movies, reading books and taking care of yourself is also an accomplishment!