Thanksgiving

I’m so thankful for the gratefulness practices that have been incorporated into my life through years of yoga classes, plus a lot of wisdom I’ve learned through being sick. What a gift that, now that I’m disabled and 90% of my prior life is no longer available to me, I am able to find gratefulness in abundance everywhere I look.

This year I am especially grateful for:

• Being able to pull off a major downsize and move despite being mostly bedbound. I now own my own home–at the beach and mortgage-free–thanks to the endless kindness and hard work of my wonderful friends and family.
• I am ever so grateful that despite the rest of my family being scattered this year, I was able to spend an epic Thanksgiving with just my two young adult nephews. We are now in the same general area since I moved. Despite a forecast of rain, we enjoyed a gorgeous sunny afternoon dining al fresco at a beach-side restaurant in charming little Capitola. The skies that have been so gloomy and smoky from the CA fires were clear and incredibly beautiful.
• Finally, I am beyond grateful that, despite a very rocky start, I will be welcoming my first grandchild in January–a girl! This trumps everything else in my life–I am flooded with joy.

Life is hard. Life is much harder with disabilities. There is so much hardship and pain in my life. It’s easy to count those hard things up and dwell on them. But there are an infinite number of things to be grateful for–those numbers far outweigh the crummy stuff. My two mischievous cats, my comfortable bed, the independence that I have still have remaining, the extraordinary life that I had before becoming disabled, Black Friday shopping, ;), the list goes on and on and on!

Count your blessings, and try to not count the bad stuff too often. Try to keep your focus on the positive, even when the negative keeps hitting you upside the head.

If you’ve ever tried meditation, it at first seems like a constant exercise in frustration, as your mind keeps wandering. It takes a consistent effort to keep redirecting your mind back to the meditation and away from the million other things it wants to ponder. It seems like you are failing over and over again.

But the point of meditation is not just the stillness you are trying to achieve, but the effort it takes to keep your mind focused, even if you never stay focused for long. That’s why people refer to it as a meditation practice. There is no perfect–you just keep trying.

I think gratefulness is a lot like that. You might not start out with a grateful mind, but if you keep educating yourself and reminding yourself to look for ways to be grateful instead of ways to despair, you can transform your view of the world so that your glass is always half full.

In my case, it took years of practice to get there. It is SO worth it! It’s like this shiny new tool you have in your life toolbox that makes everything else in your life better. This is why I end each of my posts with three things to be grateful for (even a post that is all about gratefulness)!

So with that, here are three things I am especially grateful for today, in addition to the ones already listed above: 🙂

• That even though my mind is muddled with pain and fatigue and the weird thing they call “brain fog” much of the time, during the times that I’m less foggy, I am able to continue practicing gratefulness.
• Holidays. I just love holidays. They can be tightly wound balls of stress, or they can be blissful moments of joy, like my Thanksgiving was yesterday. -happy sigh-
• The little froggy that has taken up residence happily croaking outside my bedroom window. I love how sometimes the smallest things can make such a difference in your life. It’s such a happy little noise, and I’m just hope my cats don’t find him/her!

Managing Moving

How I Managed to Move Despite My Disabilities

Well, I did it! I sold my two-story townhouse in the Silicon Valley and moved to a smaller, single-story condo near Monterey.

I did not want to move; this move was heartbreaking for me. I had to move because I had to stop working and go on disability, and I could no longer afford the mortgage payments on my townhouse on my disability income. I was also having a hard time managing the stairs, and my family and friends had been urging me for some time to move to a single-story home.

I live alone, and it took a small army of helpers to get me moved, as I can do very little on my own. My realtor is also one of my dearest friends, and she understands and was able to work within my severe limitations.

Here’s how I managed.

My entire focus for several months was to get ready to move. I cleared my calendar of all other appointments and activities. I was either working on move stuff, or resting.

I was able to purge/pack for about one hour a day, two to three days a week maximum. Friends would help me go through drawers, cupboards, and closets while I sat on a chair and they scurried around me, bringing me things to work on. I needed physical as well as mental help. My wonderful friends managed all the boxes and garbage bags, and they took away donation items each time they left. They patiently helped me make decisions as well. Downsizing is hard work!

I was not optimistic that I would be able to get through as much stuff as I needed to with being able to work only two to three hours per week. But with a friend by my side, it was probably more like four to six hours each week, and soon I could see that we were slowly making progress despite only being able to chip away at such a slow pace.

I could only work with one person at a time; two or more people was too much for me to keep up with, as I am very slow. I’m only 56, but my physical and mental speed is about the same as my nearly 80-year-old mother. My friends who are in their late 50s/early 60s can run circles around me, but trying to keep up with them quickly exhausts and overwhelms me.

One day I lost track of time and spent 2.5 hours sorting and packing with a friend. That cost me three full days of bed-bound resting (and a lot of pain) afterward to recover. I stuck with my one-hour exertion limit after that. I also got really sick from the dust the first time I worked through boxes in the garage. So I got some mouth and nose filter/masks, as well as dust-filtering goggles to protect my eyes, and that enabled me to continue working in the garage.

A friend who had just downsized and moved the year before referred me to a great moving company that could pack up most of my things so that I could focus my energies on purging. I had to downsize my stuff as I was going to be moving into a much smaller space. So the plan was for me to go through my stuff and get rid of at least 50% of it, but to leave the rest for the movers to pack what was left.

But since I had to downsize most of my furniture as well, I ended up having to pack up a lot of things myself that were in dressers and sideboards and such so that I could sell those furniture pieces on craigslist and Nextdoor. That was a LOT to manage as well; in hindsight I’m not sure that the money I made selling the furniture was worth the effort it took to do that–it took too much out of me. I wish now that I had been able to delegate that to others to manage for me.

Mid-way through getting ready to move, I got a notice in the mail that the city I lived in was having their once-a-year pick up day for any old furniture and junk that you could haul out to the curb. Perfect timing! I had a ton of bulky stuff that I needed to get rid of, including a cruddy old couch that was in my garage, but I needed someone to drag it out to the curb for me.

So I posted a message on Nextdoor, which is an online networking site for neighborhoods, stating that I was disabled and needed to hire a few people to help me on the Sunday before the Monday 6 a.m. pickup time. I immediately got messages from multiple neighbors saying that they could come and help me, and that they would do it for free! Those kind neighbors came out on Easter Sunday to help me. I paid them in fresh Meyer lemons from my tree. One man who came with his wife and baby had moved from New York just a week before. They were fascinated with my lemon tree–they had never seen one before! They were so cute. You can’t throw a rock in my CA neighborhood without hitting a citrus tree.

Another miracle occurred and I ended up not having to put my house on the market in order to sell it. That saved me a tremendous amount of effort, including clearing out 90% of my furniture and putting it in storage, repainting, etc. to have the house staged. And then having to leave the house during open houses, which stressed me out just thinking about it, as I am bedridden most of the time. The thought of having to get dressed and leave my house whenever someone wanted to come look at it, possibly multiple times a day, for days or weeks on end, would have been virtually impossible for me.

Instead, an offer came in for my house as soon as my realtor’s office heard about it. We got a great offer from a colleague of my real estate agent. The offer was “as is,” which meant I did not need to do any repairs or upgrades from the property inspection–this saved us a ton of work as well as money. And my realtor negotiated a free 30-day rent-back period to give me more time to find a new place to live and to get ready to move. Combined with the time it took to close escrow, we had about 60 days to get ready to move.

Doing two real estate transactions at once was very challenging. I had to look for a new home to purchase in (less-expensive) communities an hour’s drive away. It was very challenging for me to make the drive out to look at potential new homes while also expending the energy to get ready to move. My realtor and I ended up split the driving; I would drive the hour out, then she would drive us around to the homes to tour. She also drove on the way back home so that I could lie down in the back seat, as touring homes is exhausting work. (I am not able to rest fully even while just sitting; I need to be horizontal to be rested and to alleviate pain.)

After I found the new condo I ended up buying, there was much to do to the new place before I moved in: letting in inspectors, cleaning crews, utilities folks, etc. There was no way I would have been able to drive back and forth to manage all that during the time I was getting ready to move. Thankfully, I remembered an old friend of my daughter’s who lives in the same general area that I was moving to, and I hired her to handle all that kind of stuff for me.

Somehow, the real estate transactions could not have gone more smoothly. I was able to pay cash for the new place out of the proceeds from the old place, so that escrow transaction was much shorter than the escrow of the place I was selling. My buyers on my old place were a young couple who were getting a loan, so there was a lot more overhead involved with that. The escrow on my new place closed just two days after the escrow on my old place, so the funds were able to transfer straight over from one transaction to another.

Even with all the pacing I was doing, my pain level went through the roof during the time that I was getting ready to move. My body did not like that I was moving it more than it liked. I upped the Lyrica I take during the day, as well as the Nortriptyline I take at night, and started taking Ibuprofin and Tylenol around the clock to try to keep the pain down. I finally called my doctor and asked for a prescription for a muscle relaxer, as others with my conditions have shared in online support groups that it helped their pain. Unfortunately, it actually made my pain worse, so I just suffered, and made sure to rest as much as I could between exertion efforts.

Moving day finally arrived. The movers came and spent one long day packing everything up, then came the next day to load everything up and drive it to my new house. Thank goodness my 27-year old daughter and her boyfriend were able to help me on both of those very hectic days. (They had been out of the country until the night before my move!)

But I pooped out. About 10 minutes after getting dressed on the second day, the day they came to move the stuff, I was unable to stand or walk anymore. There was still so much for me to do, but I could not go on. I sat on a stoop on the back patio for a while (all the furniture was gone by then), but I was too tired to even sit up without support. I ended up collapsing into my car until it was time to go. I was just done in. My daughter drove me to my new home that day while I reclined in the back. There was no way I would have been able to drive myself.

My wonderful friends managed the “end game” stuff at the old house for the next few days. The day after the movers left, they managed hauling off all the remaining junk and donation items. They also arranged for house cleaners to come the following day, and carpet cleaners the day after that. I couldn’t possibly have managed all that–I wouldn’t even have been able to drive back to my old place after the big move push. I am forever in debt to my wonderful friends for handling all that for me.

When I got to my new place, I was completely exhausted and had to just rest in bed for several days. My daughter and her boyfriend made sure the beds were set up, and then took two full days to unpack and organize my entire kitchen for me. I tried to sit with them and answer questions and make decisions while they did that, but even that was too much for me. I had to just lie in bed and let them organize my kitchen in whatever way that made sense for them. That was really difficult for me! I couldn’t even be within hearing range as they talked through where to put things–it was stressing me out not being able to help.

My kitchen is not organized now in a way that I would have done it, but it would have taken me months and months to do as much work that they did in just two days. Everything is out of the boxes, so now I have the easier task of just moving things around at my own pace.

I have a long way to go to get fully unpacked and settled, but I’ll get there, one box at a time. I can’t move any of the boxes around at my new place at all, especially the larger ones that the movers liked to use. So I just have to unpack them where they are standing, a little bit at a time. My daughter and her boyfriend have been helping me get rid of the empty boxes and packing materials.

It is now six weeks after my move, and I feel like I am finally starting to come back to my more “normal” fatigue level. I survived the journey through the kindness and generosity of my family, friends, and neighbors, and also by being very mindful about pacing myself.

Oh, and did I mention that I did all this just a few months after having bunion surgery and while still hobbling around with a very lame foot? HIGHLY not recommend! That timing was very unfortunate!

Three things I am grateful for today:

• Kismet, karma, reaping what you sow, whatever you call it, the gods were forgiving and this whole process went more smoothly than I could ever have hoped for. Yes, there were periods of anxiety and a few moments of sheer panic, but once I realized that I was actually going to be able to pull this off despite my severe disabilities, I truly couldn’t believe it.
• This amazing service that I found out about and interviewed with but didn’t end up using called Managing Moves & More. They help older folks (or people like me with limited abilities) through the process of downsizing into a smaller home. They understand that you might have 40+ years of life stuff to get rid of, and how hard that process can be. They patiently sit with you and help you get rid of stuff, pack, manage all the move stuff, and even unpacking and getting settled into your new place. What a great service!
• My incredible, tireless, non-judgmental, ever-so-patient friends and family, who came to my rescue at my time of greatest need and were able to work at my snail’s pace to help me painstakingly go through mountains of my stuff and listen to me tell stories about that special vase or Halloween decoration or pair of shoes. I don’t know how I could ever repay them for their energy, kindness, and love.

 

Hello, Emotions, It’s Nice to Finally Meet You!

Ever since I had to stop working 1.5 years ago, I seem to feel my emotions much more acutely. I no longer have a job and busy life to distract me from them.

I figure that this is a good thing. I suspect that the depression and anxiety that I have not really acknowledged all my life have contributed to my health problems.

I’ve always been a logic-based thinker vs. an emotional person, so “feeling” my emotions is kind of new to me. Isn’t that something? At age 56 I’m still learning how to be me…

Here are some ways I’ve been trying to cope lately with my emotions:

• If I’m feeling depressed, I try to let myself experience it without judgment, with the knowledge that it comes and goes, and that I won’t be dwelling in it forever. This is hard for me, but letting myself “be” in those sad feelings instead of running from them seems…freeing somehow. And the feelings don’t consume me as I once feared they would. I’m still figuring this one out, but I think that stuffing that depression away gave it power, whereas “owning” it diffuses it…so interesting…

• As soon as I feel my anxiety level starting to spin out of control, if I can, I back away from the source of the anxiety and put my head in a different space for a while. Sometimes that means calling a friend–that almost always makes me feel better. Watching a mindless but uplifting TV show, or looking at some of my favorite things on Pinterest, also seems to give my brain and nervous system a rest. It is much easier to take a break from a source of anxiety now that I am not working and not under constant deadline stress. When I feel like I can re-face the source of anxiety again, it is almost always diffused enough that I can approach it with renewed objectivity.

• I’m trying to live in this quote from Lao Tzu, which someone in on online support group for people with chronic fatigue illnesses that I’m in recently sent out:

If you are depressed, you are living in the past. If you are anxious, you are living in the future. If you are at peace, you are living in the present.

I’m also trying to embrace one of his other famous quotes:

A journey of a thousand miles begins with one step.

I am trying to keep this last one in mind over the next few months, as I have to sell my home and move out of my community, which is very stressful for me. If I start thinking about all of the things that I have to do, I become overwhelmed very quickly, and my mind and body shuts down. I am forced to focus on just one thing at a time–it’s all I can manage.

In a way, my illness seems to be protecting me from stress by not allowing me to multitask any more. I am forced to take just one step at a time. In a world where multitasking is seen as a strength, slowing down like this seems like going backwards, like getting old.

Maybe if I can just reframe the term “anti-multitasking” (which is how I think about it) as “being mindful” (which is what it really is, isn’t it?), it doesn’t seem like such a negative thing. Mindfulness is quite trendy these days, especially in the uber fast-paced Silicon Valley, where everything and everyone has to move so quickly to keep up with the speed that technology is changing. Rather, the speed at which everyone is pushing technology forward! But trying to keep up with all that speediness is stressing everyone out so much that they have to learn how to practice “mindfulness” to “be present” to try to ward off the inevitable burnout.

At any rate, my body and mind’s inability to multitask anymore, even when needed during something as complicated as a move, is really forcing me to be in the moment and just put one foot in front of the other. I can only do that with my head down and my mind focused on just balancing and not falling. And the emotion I feel while doing that is…honestly… sheer gratefulness! It’s such a relief to not have to worry about so much any longer.

Namaste!

Three things I am grateful for today:

• The Winter Olympics. There is so much negative drama going on in the world right now, but seeing the triumphs of the wonderful young athletes who have been competing is refreshing and invigorating.
• That getting ready to move is forcing me to downsize. I have never been good at managing “stuff.” And I ended up with a lot of it after my divorce. It’s painful for me to go through the process, but I know I’m going to feel a lot better after I have lightened my “stuff” load.
• Living in the Silicon Valley. I’ve lived here for 30 years, but it looks like I’ll be leaving soon. I can’t afford to stay in the home I currently own now that I am on disability. And I can’t afford to buy another place here; it is just too INSANELY expensive. I live in an amazing area of the world, and I’ve had an incredible ride living here. Having to leave it makes me so much more appreciative for what a beautiful, diverse, lively, and intellectually stimulating community I’ve had the privilege to live in for most of my adult life.

The Things That I Love

I’ve kept a journal for much of my life, and around 15 years ago I decided to make a list of the things that I love in there. To me it’s a way of practicing gratefulness. It’s easy to let the annoyances in life take up residence in your brain, and then before you know it, you start creeping toward becoming a grumbly person. When life gets hard, sometimes you have to purposely remind your brain that joy is everywhere–you just have to open your heart to it.

Once I started writing the list, I couldn’t stop! I filled up several pages. It always makes me happy to go back and read that list (I’ll have to add that activity to the list, lol). It truly fills me with joy just to read the words of the things that make me the most happy.

I’m starting a new list here, because my life is very different now than it was 15 years ago. I was so busy with work and raising kids back then that I didn’t have much time to stop and smell the roses. Now that I am not as busy and have been forced to slow down by my health issues, there are many roses to smell, and lots of time in which to do it!

Without further ado, and in no particular order, here are some of the things that I ❤️:

• Trees
• Pink
• A great cup of coffee
• When my car is clean
• Movies
• German chocolate cake
• Down pillows
• Hawaii
• A crackling fire in the fireplace
• Watching my daughters grow into amazing young women
• Autumn
• The internet
• Bargain shopping
• Books
• Beer
• The natural beauty that is everywhere in my home state of Calfornia
• Holidays
• Alternative rock music
• Flowers
• The minute I am done filing my taxes for the year
• The beach
• Award shows (Academy Awards, etc.)
• Writing
• Fun cocktails
• The very special friendships I have with the women in my life
• Taking classes at Stanford
• Sunsets
• Hot tubs
• Snorkeling
• Pumpkin anything
• Broadway musicals
• Snorkeling
• Making holiday gifts every year with my friends
• Yoga
• Singing
• Looking out the window in an airplane
• Libraries
• Chocolate
• Sinking into my bed at the end of the day
• Baking
• Fire pits
• Pinterest
• My book club
• Good conversation
• Swimming
• A perfect peach
• My kitties
• Christmas carols
• Brunch
• Great TV
• Spending time with my family
• Beauty in nature

I’m going to keep coming back here and adding things to this list over time. Especially when I feel myself starting to get grumbly…

Three things I am grateful for today:

• Well, all the above things that bring me such joy!
• Award shows on TV. Last night the Grammy Awards were on, and I was moved to tears by Kesha’s heart-wrenching performance of “Praying.”
• Safeway grocery delivery. They bring the groceries right into my kitchen. I think I need to add this to the above list!

Making Decisions When Your Brain Doesn’t Work

On a good day, my brain feels almost normal. But that feeling of normalcy is deceiving. I think part of it is that I want so badly to feel some semblance of the person I used to be. When I am feeling somewhat normal, it gives me confidence, and I forge ahead with doing things that used to come easily to me: paying bills, writing an email, planning things, having a conversation.

But almost always, holes open up in my brain and seemingly simple things fall into them and are lost. Whole words are inexplicably missing from sentences I’ve written. When recollecting conversations I know I’ve had, I might remember the person I talked to, or when I talked to someone, but I can’t remember a darned thing about what we talked about. Sometimes I even forget that I’ve had a conversation altogether!

Recently I apparently made a doctor’s appointment for a second opinion on an upcoming medical procedure, but when I got a reminder call about the appointment, I had no recollection of the doctor’s name or of making the appointment. It took me a few days to figure that one out.

This is one of the things that made it terrifying to try to keep working as my physical and mental energy were waning to nothing. There were holes all over the place. I felt like I was running as fast as I could to keep up, all the while falling more and more behind. At the same time this creeping sense of horror and fear, (emotions not part of my normal repertoire), bloomed larger and larger, making everything that much harder as I continued to fail.

But I’ll have to go into that in more detail in another entry. Today I am struggling because I am faced with some really big decisions, and when even small decisions can leave me paralyzed, I am especially challenged to say the least. And it is very difficult to trust my brain to make decisions. The big decisions I have to make today are:

• I have to pick new health insurance. Like TODAY. I was laid off from my job as a technical editor at a large high-tech company in August 2016. I’ve been on Cobra insurance, which includes dental and vision, for 18 months. My Cobra expires in two weeks. My choices are to:
  • Continue with Cobra for another 11 months, which is available to me as an option because I am on disability. It is VERY expensive, but I’d have great coverage.
  • Sign up for Covered California, CA’s version of the Affordable Care Act. I actually applied to see how it all works, and it turns out I am not even eligible for the “regular” insurance plans. Because my disability income is so low, I was kicked down to Medi-Cal, CA’s version of Medicaid. It wouldn’t cost me much (if anything). But the coverage isn’t great, and I would have to switch all of my doctors, which would be very complicated for me what with all my health issues.
  • Work with a private insurance vendor.

I’ve been employed my whole life and have never had to have health insurance outside of my employers’ subsidized health plans. I’ve always had great insurance, which with the myriad health issues I have, has been incredible. The thought of going on any other type of “public” insurance is mind-blowing. And by mind-blowing I mean there are WAAYY too many changes for my hindered mind to comprehend.

Since I’ve been sick, I’ve been trying to structure my life to make decision-making as simple as possible. Being faced with too much to think about and decide is a sure path to a crash. Mental exertion seems to be just as detrimental as physical exertion. I’m still getting used to how that works…err, I guess doesn’t work.

• I have to move. Now that my only income is from my disability payments, I can no longer afford to pay the mortgage on the townhouse I bought six years ago. My options are:
• • Move to one of the smaller beach communities near Monterey, CA, which are about 65 miles south of where I live now.
  • Move to Henderson, Nevada, one of the suburbs just outside of Las Vegas, where my brother and sister-in-law moved last summer.

The thought of what it will take to sell my house is so overwhelming that as soon as I start thinking about it, I immediately shut down. On a good day I can do maybe a load of laundry, and if it’s an especially good day, I can do my dishes for the day as well. I have to rest (horizontally) for the remainder of the day and night. Packing up my house to sell is virtually impossible for me. I’m going to have to hire an army of people to help me, and that thought stresses me out to no end as well. I can’t have that much chaos around me, or in my head.

It’s one thing to think about what it will take to uproot me from my current home and deposit me in a new home. What boggles my mind even more is choosing where I am going to live next. My choices are the desert…or the beach. My heart wants to live near the ocean; it has been my lifelong dream to retire at the beach. But my wallet and my disability needs me to live in the desert, where I have family close by who can help me, and where I can afford a much less expensive home with a pool, so that I can get some essential gentle exercise every day.

When I am faced with these types of monumental decisions, I try to do these things:

• Give myself as much time as I can to make the decision.
• Gather as much information as I can, and DOCUMENT it because I forget things so easily. In my clearer-headed days, this was easy. This is not so easy to do with a muddled head.
• Make a pros and cons list and keep adding to it as time progresses.
• Consult with friends, family, and as many professionals as possible (realtors, financial advisors, etc.)
• When I get too overwhelmed/spun up about a decision, I have to just let it go to get my brain in a better (safe) place to relieve the mental exhaustion and anxiety. Ways I do this are to visit with a friend, get out to see a movie, sleep, read, or watch TV. Today I’m going to try to cook something. I love cooking, but I rarely have the energy for it. But it’s always a satisfying activity, and it’s a good positive distraction for my wiped-out brain.

I think just writing all this down is helping. But I’m spent for now just trying to get my mind wrapped around it all!

Three things I am grateful for today:

• The fact that I have had such great health insurance for all of my adult life. When looking at some of the public options that are available, it makes me realize how good I’ve had it all these years.
• The fact that I have good options, both with the health insurance issue and with choosing the place I’m going to live next. I will make a good profit selling my townhouse, which helps in moving forward to where I will live next. And if I can’t pack a thing myself, I’ll just have to have a moving company come in and pack up everything for me. It will cost a lot more, but I just don’t known how else I’ll be able to manage it.
• Between my family and friends, I have a lot of support. Especially right now, I have the mental support and reality checks I need to make my decisions. Not feeling alone in this makes all the difference in the world to me.

Magic Days (and the Ensuing Madness)

So, yesterday and today (so far) I’ve been experiencing MAGIC DAYS!!! I haven’t had a MAGIC DAY since May 1. So…almost exactly six months.

A MAGIC DAY is like your birthday, a trip to Disneyland, the best haircut you’ve ever had, an entirely clean house (the whole house, not just the corner of one room), and the angels singing, all at once.

A MAGIC DAY is when I wake up in the morning and randomly feel ALL BETTER! Like a NORMAL person!!

Fatigue–gone!

Pain–gone!

Tears of rainbow-colored joy running down my face!!

WHAT JUST HAPPENED?!?!?!

This is where the madness ensues.

When you feel crappy all the time, and especially when you are just starting to feel crappy all the time when you used to be “normal,” you do what most people do. You run down the list of things you did the day before to see what changed that could have caused you to feel suddenly worse:

• Am I coming down with something?
• Did I not get enough sleep?
• Did I eat or drink something out of the ordinary?
• Did I drink enough water?
• Do I need to work out, or did I work out too hard?

You know, like what normal people do.

When you’ve been sick for a long time though, and then you suddenly feel better, usually for no apparent reason whatsoever, you look at what could possibly be responsible for the relief from your symptoms. What was different so that you can repeat it forever and not be in pain and feel like you have sleeping sickness all the time??

• Did I change up any meds?
• Did I eat or drink something different?
• Did I overdo activity or get an exceptional amount of rest?
• Was there an extreme emotional or intellectual event that occurred?
• Was there a change in the weather or barometric pressure?

You seriously go mad trying to figure out what might have changed to cause you to feel so suddenly better. The bizarre thing is, it’s almost always…nothing! It’s as if the gods just decided to give you a reprieve for the day.

For me, magic days usually last all day. And here is what’s so hard about them. For as rare as MAGIC DAYS are, when I suddenly feel better, I look around and see what a disheveled mess everything is around me. When you are chronically ill, it’s impossible to keep up after your home/car/stuff properly. So when I have energy and I suddenly “wake up” on a MAGIC DAY, I want to dive in and tackle as much as I can while I’m feeling good enough to get stuff done.

It’s like I suddenly forget that I’m sick and just assume that I’m back to normal and can do anything I want. But I’ve learned that that is a fatal mistake. I have to force myself to not overdo it; to make sure that I rest between activities, even though I don’t feel tired, to avoid crashing even harder when the magic fades. And the magic ALWAYS fades, usually by the next day.

But for a few fleeing moments, I get to almost forget that I am sick. It truly is magic! There is usually no other explanation for it. MAGIC DAYS are as unpredictable as BLACK DAYS, when I wake up feeling like I’ve been hit by not just one truck (the norm) but three, then dragged through the mud, then tossed over a fence, and hit again, by a semi.

I am truly forced by the unpredictableness of how I feel to live one day at a time. And for today, whether magical or not, I’ll take it! THANK YOU GODS!!

Three things I am grateful for today:

• Obv, MAGIC DAYS!!!
• I had multiple doctor appointments this last week, and as tedious as they are, I have to say, I am SO grateful for the excellent health providers that make up my large team.
• Thanksgiving is next week, and I’m ever so grateful for my wonderful, dysfunctional, kooky family. We love to get together and spend time together, and we truly enjoy each other’s company. And I’m ever so grateful for the bounty that we are blessed with year after year.

My Cage

In 2015, the pain from my Dercum’s Disease tumors increased to the point that I could no longer go on with my life trying to ignore it. The painful tissue growth was starting to attach itself to my rib cage. I’ve had painful tissue and lipomas all over my body for years, but I kind of got used to that pain over time. Being at a certain level of pain had become my new normal. But this rib pain was at a whole other level.

The rib pain became a constant companion. I joke about it being a monkey on my back that is constantly biting me all over. But it’s no joke. The pain got to the point that I could not sit up for more than an hour or two; I had to lie down to try to ease it.

But the pain never went away completely no matter what I did. No over-the-counter medications could touch it. We tried pain patches such as lidocaine and flexor. No amount of acupuncture, yoga, massage, epsom salt baths, meditation, walking, you name it, made a difference. My doctor finally put me on Lyrica, which, though it was a doozy for me to titrate up on, did snip an edge off of my pain level. But pain continued to be my constant, unwanted companion, unrelenting as it gnawed at me, burned me, and drained my energy, my patience, and my Joy.

And, ahem, no one, NOTHING, gets to take my Joy away! Nope. No way Jose. “Joy” is my middle name. Literally. This is NOT happening.

I did everything I could think of to relieve myself of this pain. It was completely unacceptable for me to be in pain all the time. The “entitled” me was determined to not stop until I got what I want–to have this pain gone! This philosophy of determination has served me well in most areas of my life–I firmly believe that if you don’t stop until you get what you want, you almost always get it!

I saw three different surgeons and demanded that they find a way to get this painful tissue out of my body. They took tests and images and poked and prodded me. They told me that they could take out a few of the more formed lipomas, but that most of the tissue, which is diffuse, was attached to the underside of my skin. Then they told me that the only way they could get this tissue completely out was to flay me–to literally take all of my skin off! And even if they could figure out how to do that and graft new skin on from somewhere else, there was no guarantee that the painful tissue wouldn’t just grow right back again. WTF?!

Eventually, I finally realized that I was going to have to resign myself to a life of constant pain. I could not find a way to get rid of it. Giving in to this reality shattered something inside me. I could not fix this out of sheer determination. How could this be? How could I live like this? How do people do this? Where do you put this pain mentally, emotionally, when you live through each moment of each day knowing that the suffering will never, ever stop?

I ended up at a professional pain management clinic, where I took a seminar on pain psychology. I started seeing a pain psychologist. Working with him was very helpful, but no, it did not take the pain away. I learned that I was a person who suffered from “chronic pain.” Ugh! Who wants that label?? But I also learned that if you can’t make the pain go away, you have to learn to bend your life around it. You have to figure out a way to incorporate the pain into your life.

Now it’s nearly three years later, and I feel like, in a way, I am living my life inside a virtual cage of pain. This cage surrounds me at all times. It has changed the way I live my life and interact with the world. The cage is literally inside me–my rib cage–and at the same time, it envelops me from the outside.

This virtual cage forms a barrier between me and what my life should be. It is heavy; it makes me tenuous, and it furrows my brow. Carrying its weight exhausts me All The Time. The bars of this cage get in the way of interactions I have with other people. I am locked in a constant battle of giving in to the pain vs. trying to carry on.

The pain always wins in the end. No matter how hard I try to work my way out of it, I eventually have to give in to it. There is no escape. I am its prisoner. It is my master, and I am its slave.

I hate that sh*t.

My rib cage actually looks something like this:

The painful tissue is as sinister as it looks. It grows slowly, invasively, like a weed. And there’s no way to stop its progression.

In my mind, when I have my rose-colored glasses on, I pretend that my cage looks like this:

Even though it is an evil and cruel cage, that doesn’t mean that I can’t decorate it, right?

There are many types of cages. Some people lock themselves inside cages of fear, guilt,  anxiety.

Some people let other people put them in cages.

There are even zoos where you allow yourself to be put into a cage, and then the animals come to visit you!

So I’m not sure where this is going. As usual, I’ve gone a bit off-topic, oops! I don’t have a pithy way to wrap this up. I just needed to acknowledge my pain, to give some form to it. To try to describe what it feels like and how it has affected my life. It’s hard to wrestle with something that is so nebulous. I’m not sure that it helps to create a metaphor for it? Maybe it will make it a little easier for me to search for a virtual key to one day unlock my cage and escape.

I have found that margaritas make good temporary keys. 😉

It is HARD to find gratefulness when you are in pain. But gratefulness also serves as a key. Without gratefulness, it’s easy to sink into hopelessness and despair. This amazing book taught me that.

Three things I am grateful for today:

• My hand-held percussion massager. I’m having am especially high pain day today, and this little guy can pound and rattle out some of the sharp edges just so.
• The outlet of writing. I’m not too creative in other ways, but writing scratches an itch that I’ve had for as long as I can remember, and it makes me feel productive. Which is especially important, as I no longer have the challenge and satisfaction of  working.
• My pain psychologist, who helped me see that my usual way of “not taking ‘no’ for an answer” was simply not going to work when dealing with chronic pain. I’m grateful that despite my bull-headed ways, I was able to listen to him, learn, and find some acceptance.

 

 

Letting Go

I finally gave in and got a disabled person parking placard. Ugh. Even though I’ve been on disability for over a year now, I guess I’ve been in denial that I was THAT disabled that I would ever really need one of those. I finally used it for the first time during a recent trip to Ikea. It felt like a tipping point in admitting the extent of my disability. (I’m an expert at denial. Reality, well…we’re still working on that…)

I know, for someone with chronic fatigue, it seems weird that I would even attempt a trip to Ikea. It’s like the Disneyland of shopping–it looks like fun, but it’s like climbing Mt. Everest for us energy-challenged folks. But for months I’d been researching inexpensive wardrobe cabinets online to house my myriad Flexitouch lymphatic pumping system pieces. They are bulky, and I’ve got seven of them, and I need like an entire separate walk-in closet to store them properly. I needed to go to Ikea to see some of the cabinets in person to make some final decisions.

I count a trip to Ikea as exercise. After a lifetime of walking for exercise, and a couple of decades of practicing yoga, this last year I had to quit all “formal” exercise due to pain and fatigue. I’m no athlete, but that has been heartbreaking for me. I cried when I had to finally quit my gym! More on that in another entry.

So even though my body is tired and in pain a lot, and I need to be resting horizontally about 80% of my waking hours, I still need to get out of the house and move around sometimes. Before I got sick, I used to love to shop! I find that occasional trips to Ikea and Costco now serve as exercise for me, and–hello–retail therapy! I push myself a little, and on a good day, I can last up to about 45 minutes if I take it slowly and take a few breaks to sit down. Ikea has that nice little cafe where you can get a free cup of coffee if you belong to their Family discount club.  (We won’t talk about the “crash” payment I may have to make later…when I can’t get out of bed at all for a few days…nope, we’re not talking about that right now…)

But I’ve completely lost my point. (Which is how I normally roll, so no surprise there.) MY POINT was that I finally gave in a little bit more to my “disability” by using that parking placard. I don’t even like using the “D” word! But there it is. I am pretty severely disabled. Deep breath. Phew. I said it out loud.

Using that parking placard for the first time felt a bit like jumping off of a cliff. Like there’s no going back. But I suppose I should be thinking about it as one more step toward my new future. And there might be benefits along the way, right?! When one door closes, does another one really open? Being able to park in the handicap parking spot right in front of Ikea saved me hundreds of steps, which can make or break my ability to get things accomplished. What’s next–a mobility scooter? Oh gosh, I can’t even go there in my mind. One step at a time…(pun intended)!

Three things that I am grateful for today:

• That darn disability placard! Even though I kind of resent it in a very immature “I don’t wanna” kind of way, I’m very grateful that it is available to me when I need it.
• Online shopping. My goodness,  I can’t imagine how I would be able to survive without it now that I am disabled. I rarely have the energy to get out to a brick and mortar store anymore.
•  This blog. Even if no one reads it, it somehow makes me feel a little less alone to be able to get these thoughts out of my head. My apologies to anyone who is actually reading it!

 

The Pacing Paradigm

When you have an illness that includes chronic fatigue, your life becomes this seesaw of trying to do the things that you need and want to do vs. being collapsed in a heap of overwhelming fatigue to recover from that effort.

In my case, any exertion to do anything, even simple things like grocery shopping or having dinner with friends, can set me back by a day (or more) of having to be completely horizontal to recover. This has been the single-most confounding thing I’ve had to figure out how to manage since I became sick.

I’ve learned that my body is a trickster and I can’t trust it. On the rare day that I feel something close to a normal amount of energy, I can’t take advantage of that energy by catching up on long-neglected chores and errands. If I do, I suffer an even more severe setback of exhaustion.

Back when I was healthier, I could tackle numerous chores and tasks in a day, including working full-time. I look back on those days in awe. And I see all the other people in my life who still operate at that level. And then I look at my to-do list, and if I’m having a good day, I choose one or maybe two things to try to accomplish, like unloading the dishwasher. The goal is to not “crash”–exert myself to the point where I can’t get out of bed at all due to exhaustion/pain.

My chronic fatigue doctors told me that I need to live my life to avoid crashing. Every time you push yourself to the point where you have to crash to recover, it sets you back. Last January I found a series of online classes for people with chronic fatigue and fibromyalgia that help you learn to pace yourself so that you don’t crash, and I took the introductory course.

Although it seems like pacing yourself would be mostly intuitive, since you’ve really been doing it in some form or another your whole life, I learned so many strategies from this class! The most important thing I took away is that I needed to actively manage my time at a very strategic level to avoid crashing. This simple shift in the way of thinking about my life is probably the most important thing I can do to ensure that I am not making my health condition worse. I mentioned this to my chronic fatigue doctor, and she corroborated that–pacing your life correctly to avoid crashing is EVERYTHING in trying to get better.

Now I keep a very careful calendar that includes several rest days between the days that I have an activity like a doctor’s appointment. I actively schedule “down” days in addition to days where I have an obligation. I also plan rest days before an activity day so I can bank my rest ahead of time. When I have one of my lipoma removal surgeries, I blank out a full eight days of rest on my calendar afterwards for recovery. (As a comparison, before I got sick, those little surgeries wouldn’t cause me any setback at all. I was able to continue working and go about my life as usual.)

Who knew that I had to take a class to learn how to be sick?!

Three things I am grateful for today:

• World Series game seven tonight! Love a well-matched series!
• The folks who manage this web site and classes for peeps with chronic fatigue/fibro like me. I’m on the alumni group now and we just had a great online (email) discussion about clothing. Sounds weird, but everyone shares tips and habits, for example, do not buy clothes anymore that need to be ironed!
• Once again, I can’t say it enough, that I have found an outlet for sharing with someone (maybe no one) about the all the stuff that is rolling around in my head about being sick. Gentle hugs if you are actually reading this!

 

Support

So on Sunday I attended a support group for people with Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS). It’s held at one of my local medical clinics, but naturally, I was too tired to attend in person. Thankfully there was an option to call in.

I’m actually kind of surprised that they even have in-person meetings given the nature of our condition. But I get that if you are too sick to get out much, it’s nice to meet up in person with other people who really understand what you are going through. It just seems a little ironic to me!

I tend to get overwhelmed easily when having to absorb a lot of information in a short amount of time, but I took some notes during the meeting and learned a few things. I shared a little bit about myself and my situation with the group, and although there were only a handful of people in attendance, maybe four or five from what I could tell from on the phone, I got some good feedback and tips.

First of all, I am in the process of obtaining disability. I am on long-term disability through my former employer, but I was recently denied Social Security disability when I first applied. They said I wasn’t sick enough to be disabled. They determined that I was able to work. The way I understand it, Social Security disability is supposed to kick in after a year of long-term disability. But I guess getting approval for the disability is an entirely new hump to get over.

When I first got the denial letter, I was shocked, then hurt, then livid! If they could have followed me around at work the last few years when I was dragging so badly I could barely function, trying to hang on to my job by a thread, or see me on the three days a week I worked from home, lying flat on my back in bed because I was too tired to even sit up…well, it just royally pissed me off that they could deny me disability when I am bedridden pretty much all of the time. And they don’t even know me! And my medical files are a mile thick! ARGH!

I knew that wasn’t rational. I am not normally a very emotional person. Some more experienced people reassured me that they deny just about everyone the first time they apply, as well as the second time, when you submit for “reconsideration.” It’s not until you are assigned a court date and go before a judge that you get serious consideration, apparently. But that could take a year…or two.

So I was sharing my experience with the support group about all this, and someone suggested that I get Nolo Press’s book on disability. DUH! Even though I know about Nolo Press, it never even occurred to me that they might have a book on disability (and I used to edit books for a living! I swear my brain is full of holes!) So I ordered it (on Amazon, so I would get it sooner. Don’t get me started on how essential Amazon Prime is when you are housebound.) I wish there was a “Disability for Dummies” book, as that level of explaining is about where my brain is at these days, but I could not find one. There is, however, a Social Security for Dummies book, which I ordered as well. I did not see many other books about disability (there are lots of books about working with people who have disabilities though).

I’ve got lots of reading ahead of me. I hope I have some good reading brain days ahead. I don’t get them too often anymore…

Three things I am grateful for today:

• That there is a local support group for people with ME/CFS, and that I figured out how to join them. There’s nothing more isolating than being sick enough that you are housebound most of the time. Connecting with others in my community for support and to exchange information is such a gift. There are lots of online-only support groups for people with ME/CFS as well.
• Fall! It’s my favorite season BY FAR. I love warm days and cool nights, the falling leaves, the pumpkin everything. And my birthday, of course! 😉
• That the Dodgers won the first game of the World Series last night! Whoo hoo! Although I live in Northern California now and love the Giants and am supposed to hate the Dodgers, I’m a Southern California expat, so I’m happy if any California team is winning. GO DODGERS!