Happy Anniversary

Today is my one-year anniversary. One year ago today was the first day I worked from home. Things have changed so much. I still have a dog looking at me like I’m being way too lazy and need to get off my computer. But the other dog and Terry, now my ex, are in Oregon, soaking up the ocean. I have gone from hating working from home to seriously appreciating it. It’s like getting a raise in pay and time both. I’ve gained a lot of clarity about my own needs and wants and how to accomplish them. But on the negative side, I’m a little afraid of people on the whole. I’m emerging from this COVID cocoon looking differently at the people around me. So much has happened to make me realize there are people out there who do not make me happy. Or maybe they’re on the whole unhappy and want the rest of us to be unhappy with them. Or they have more than they need so they’re going to make sure they keep it and stay on top. I’ve always understood inequities in human society. It’s a thing that’s been around forever. I understand hate; again not a new concept. I just never felt completely surrounded and beaten down by hate and inequity, by the people espousing it and the people unaware (consciously or unconsciously) of it.

This is actually earth-shattering to me. I’ve always been an optimist (perhaps disappointed but still an optimist). I’ve always believed in the basic goodness of humanity. I still see that goodness. But I also see the cracks in the porcelain. I see people obsessed with ideas instead of facts, unable to distinguish between not just right and wrong, but truth and fiction. Believing in something with your whole heart does not make it true or real. It does not make your neighbor wrong because he or she has a different belief. I’m not just talking religion or politics. That’s the easy pick. It’s being made to feel like there is a constant choice – if you love this, you cannot love that. If you love the Beatles, you can’t love Elvis. Making everything an “either/or” instead of an “and.” I can care about more than one issue at a time. You have to when there are 17,000,000,000,000 problems in the world. I can worry about animal rights just as much as I worry about human rights. Just because I worry about animal rights does not lessen my worry about human rights. But we’re living in a world where if you speak out against animal cruelty, you will likely be faced with someone pointing out that people are more important than animals, rather than recognizing you are speaking up for animals, not reducing the worth of humans. I don’t like this world. Not right now. I look at my home and my muddy pre-spring garden, and I am grateful. But I understand my privilege. Even with the struggles I have – physically, emotionally, financially – I am privileged. I am also ineffective, mute in an angry world, constantly recoiling from conflict.

What does this have to do with fibromyalgia? Maybe it explains a bit why I’ve been so quiet this last year – few years. There is so much to worry about. To focus on one thing – fibromyalgia – is like saving one snowflake from melting in a flood. It doesn’t make it any less important than the other 16,999,999,999,999 problems in the world, but my attention is clearly divided. There’s luxury in being able to focus. Not everyone recognizes that. Focus is a luxury. Most of us multitask our way through the world. I’ll get back on track. This little blog is not meaningless. It’s small, but it’s not meaningless. And I do have a few things I want to say before I shuffle away.

Atypical Body Dysmorphia

Is it a thing? So here’s what happens. I’m walking along, feeling good about the world and myself, swinging my hips, head raised high, and then I have to enter a building. It doesn’t matter what building, except that building has glass doors, and they’re working like a mirror. And I catch sight of myself for the first time that day. I go from a youthful 25-year-old to my real 58-year-old. From young, thin, and pretty – to older, overweight, and… different looking. I don’t recognize myself anymore. I don’t just hate mirrors and cameras, they cause panic. My biggest challenge in the last several years was being mother of the groom! I had to talk my way through the family photos, and even then, I’m clinging onto my son’s arm and turned slightly away like I’m about to dash out of the picture. I felt like I was being shot by something other than film. The way I feel about the way I look does not correspond with the way I actually look. The face I think I have, is not the face I have. And oddly, I FEEL better than I LOOK. When I was young, I thought I was fat and ugly – I look at pictures from back then and realize – I was thin and pretty! It’s done a complete flip and I don’t think I ever met myself in the middle so that my perception of myself was equal to my real self. Ever.

What’s this got to do with fibromyalgia. I have no idea. Maybe nothing, but I’m going to try to train myself to:

Look at myself. Allow myself to see myself as I am. Not as I think I am. And to appreciate myself as I am. Nobody’s ever actually run away screaming, so I think when I do catch a glimpse of myself, I’m not perceiving myself properly. The panic I feel when I unexpectedly (or expectedly) face a camera or mirror or glass door warps my perception of myself. I’m going to try to change that.

If I’m successful at feeling comfortable with my own perceptions, I bet I’ll feel better physically too. Fibro is a real physical disease, but I firmly believe state of mind can control how deeply it sets in.

My plan: It’s not set in stone, but I’m going to supplement this website with a vlog. I’m going to look myself in the face while I talk about…. whatever. Maybe I’ll throw in some middle-aged-fat-woman stretching videos so I have to face the rest of me too. I don’t know, but weekly. I have to commit to it. I’m turning 59 next month. I’m single again as of next week Wednesday, so it’s time. I can do this.

This Is Your Fibro Body on Stress: A Fibromyalgia Simulation Suit

There are old age suits. You put it on and you age 40 years. I’m not sure how they simulate the aches and pains that come with old age, but it does give a younger person a good idea about mobility and the difficulties with motor skills associated with age. Cool. I wonder if there is a suit to approximate a fibro body. When I Google it (half-heartedly, I admit), I only come up with wishes for a simulation suit. It would be complex. Not everyone experiences fibromyalgia the same way. Even good days have symptoms; bad days can have a myriad of symptoms. In addition, fibro reacts to outside stimulation that can create a “fibro storm”- a whirlwind of symptoms that can knock you off your feet. Here’s a circumstance and consequences of putting mental stress on the fibro body:

I work as an Education Program Coordinator for a large medical institution. It’s a great career that fits me, allows me to challenge myself but also manage stress for the most part. It doesn’t usually knock me off my feet. My favorite time of the year is interview season and selecting the new batch of residents. It’s my Christmas. This year for the first time (due to COVID, of course) we had virtual interviews. We have worked for months getting ready, deciding how we want the interview days to look, how we can present ourselves the best, give the best experience to both candidates and interviewers. It’s been an arduous task, and once we developed the plan, I’ve been going over and over it in my head for the last several weeks. Last week was the first set of three days of interviews. In addition, we developed a virtual social event for the candidates to meet our current residents so they could socialize and ask questions. Both the interviews and the social event requires me to sit at the computer all day with a timer and move people from “room” to “room” for about 12 hours. We could have hired an IT person to do this for me, but he or she would not have made sure the interview was actually done before moving the candidate. We decided it was better for me to break into the interview, let the candidates and interviewers end and then move the candidate out. So that’s been my day – watching timers, talking to candidates, being on call for technical difficulties. I’m not alone; I have the residents and a partner to back me up. At this point, we’re at three days done and three more to do next week.

Before the end of the first three days, I could see on my computer screen that I had lost color in my face, despite the computer backlight I have, and my double chin was thickening. My eyes started to swell despite getting good sleep. Both the pain scale and the relentlessness scale was ratcheting up. The pain was not the usual joint pain. It was a deep tissue pain that radiated from the inside out. In addition, joint pain was increasing throughout the three days, in particular back pain, probably from sitting at the computer for such extended days. Walking was problematic. Shortness of breath stopped me from walking at a normal speed and at one point I had to stop completely, just for a moment, before I could take another step. If a bench had been right there I would have gladly sat for a few moments and caught my breath. By Friday, I was losing my vocabulary. I couldn’t think of the term “bluegrass” and several other words or phrases that I was searching for. I was fighting against sleep, slurring my words, staggering in the hallway. I know it sounds very dramatic, and it was not terribly noticeable to the people around me, but in my mind, I was at a crisis point. If I had to do one more day of this process, I am sure I would not have managed. I not only love my job, I rely on my job. I would lose everything without it, and if I appear drunk during interviews, I have no doubt my job would be on the line. Friday night, I was asleep before 9PM. Saturday morning I woke up about 8AM. I was asleep again about noon, awake at about 5PM, asleep again about 11PM. Today, Sunday, I’m maintaining consciousness without physical activity.

Here’s my version of the fibromyalgia simulation suit in this circumstance:

  1. Get a bad flu – this will simulate the generalized interior ache and ill-feeling – I often feel like I have a fever
  2. Add weights to the shoulders, elbows, and ankles
  3. Drink several gallons of water – which do not go to the bladder, but are retained in your tissues and joints
  4. Simultaneously, eat a 1/8 teaspoon of cinnamon to simulate dry mouth
  5. Add pressure bandages to your joints and then tweak them so they not only impede mobility but add pain
  6. Wrap an Ace bandage tightly around your chest so you breathe with your shoulders instead of your diaphragm, and you feel a constant struggle to get a deep breath
  7. Stay awake for 12 hours longer than you should – lose one night’s sleep
  8. Put in earbuds with either continuous static or high pitched ringing
  9. Add to the earbuds a talk show with someone talking incessantly (brain chatter)
  10. Take off prescription eye wear or put on glasses if you don’t normally wear them
  11. Remove the rigidity of your walking surface – add soft spots or tilt the floor boards so they aren’t level

A fibro simulation suit may be doable, but I wouldn’t wish it on anyone. Do I regret a week like this? Do I dread the upcoming week? No and no. I accept and choose the consequences for the things I do. The only things I regret are the things I have not done. The only dread I have is losing the choice to do them.

Happy 2021 – Begone 2020

I’m not actually angry with 2020. There are actually a lot of positive things that happened in 2020 on the whole personally, socially, politically, etc etc etc. Hopefully we (society) can take the good things – such as learning about what’s truly important in life and coming up with innovative ways to work and keep in touch with family and friends – and build on them in the coming months while we wait for our vaccines. Personally, I’m going to focus on my own little corner of the world. It’s like I’m living in a messy closet right now. A little organization and cleaning is in order. Until my closet is in order and without a layer of dog hair on the floor, I can’t expend the energy on anyone else’s closet. There’s a Bible verse about removing the mote in your own eye before you try to take out the mote in someone else’s eye – I don’t remember the verse exactly, but only because of the word “mote.” I had to look that one up way back when and it stuck with me. I think that verse should be the anthem for 2021. Essentially stop being judgmental, fix your corner of the world. I’ve always said, if everyone fixed their corner of the world, the world would be beautiful. Instead lately we’ve been gnawing at everyone else’s motes.

So my goal – not to be confused with resolution: Clean up my closet, inside and out, top to bottom, until it shines. Of course when it shines I’ll have to start over because that dog hair gets everywhere, but I’ll be able to expand the scope by bits. That’s all. That’s how I’m going to spend 2021.

Failure in the Time of COVID-19

Just before “COVID hit” (are you tired of that phrase too?) I said I was going to lose weight. It’s part of the experiment to see what actually helps fibro symptoms and what doesn’t really. So that was…. 9 months ago? Instead of losing weight, I’ve added probably a baby’s worth of weight, so I’m due now any day. But I can’t schedule an inducement to shed the weight. I blame COVID; I blame working from home; I blame the loss of weekly treks in the pool; I blame wine and pasta; I blame failure.

There have been successes. Working in the garden – I didn’t get as much done as I wanted, but I got a lot done. Working from home – I save money and time (lots of each) by working from home. I don’t see going back to working on site now, but I’ll worry about that bridge when it falls. I have a home and a job and friends and security. My life is on the whole good – still. I’m grateful for that goodness.

But I’ve failed at getting back to writing on this page and reading the articles I need to read. I’ve failed at my latest experiment and in fact have done damage to myself. And I’ve failed at my relationship. That makes me saddest of all. I’ll be going back to going it on my own after having someone in my life for 4 or so years. And it is my failure. I fail at accepting the things that women accept all the time, from the small things, like praising a man to high heaven for doing the most basic tasks, to much bigger things. I love Terry and want to see him happy – I’m not the person to make him happy. He’s not the person to make me happy. We are better suited to being the people each other can count on as we go our way separately in life. If we can achieve that, we can turn failure into a positive. I’m hopeful.

I’m hopeful that with this change I can resume my “normal” activities that have been put on hold. That I’ll be able to read and write and… think. My thinker has been blocked a lot for too long. One of the things I have had to struggle with is the idea that it’s okay to put what I want ahead of what other people want. I take care of people all day every day in my job and often in my life. With a chronic lack of energy and chronic exhaustion, I spend what little energy reserves I have on the needs of others. I’m not a saint. I don’t want to be a saint. I am, however, almost 60, yep upper reaches of 50, and it’s okay (I tell myself everyday) to put my needs ahead of other’s needs. I’ll always make time for people. I’ll always struggle to make time for myself. But asking for distance, for an empty home, is like blocking my calendar, giving myself administrative or office time. Some people need to be alone on a regular basis. I’m one of those people, to the detriment of relationships.

The Fibro Fight

I had my first fibro fight today with my partner Terry. Today he is out and about on his own because there’s a heat advisory this afternoon, I melt in the sun, and I wanted to get in the garden this morning while I could. He said that was fine with him. But when I said to tell the people he would be seeing (outside in the heat and sun) I would see them next time, he very blithely said, “It’s okay I just blame it on your fibro.”

We were in the kitchen and I bought a new knife set yesterday. Just by way of background.

My response was, “No. You never do that. You never blame anything on my fibro. If I’m having a fibro related problem, it is up to me to communicate that. You never blame anything on my fibro ever.” He looked at me like I was crazy and said, “Well–” At which point I said, “No, you never do that. You don’t understand, and don’t look at me like I’m crazy because you don’t understand.” He knew better at that point than to say “Well” again, because he knew he wouldn’t get farther than that.

And that was the fight. No knives involved. Yet. The thing is, when he says something like that, I learn a couple things. First, that he talks to people about my fibromyalgia. This indicates to me that he is frustrated by the effects I experience (less energy, lower sex drive, crankiness). It also indicates to me that he is more affected by my fibro than I think he is. It also indicates that he has no boundaries, which I already knew, but that’s not a fibro issue, but he doesn’t understand that fibro is personal. People don’t know I have fibro unless I release that information to them. Secondly, and more importantly, a statement like that indicates a huge lack of understanding about how I want to and generally do deal with my fibro.

Fibro is an underlying, non-lethal, non-curable, relentless, permanent pain. Okay, cool. I can let it run my life. I can make excuses not to do things because of my fibro. I can sit around and feel sorry for myself. I hope to God I don’t do that. I don’t want to do that. I want to be mindful of how I live my life. I choose. I chose to work in the garden this morning, knowing it would wipe me out (sweating for a few hours in the sun and heat will wipe a lot of people without fibro out too), and knowing I would not be comfortable with going out this afternoon if I work in the garden. I chose the garden. I chose the garden over people. My choice. Not the fibro’s choice. Fibro does not have that power over me. I’ve worked for years to understand my own power over fibromyalgia. I’m not relinquishing that power, even to an offhand unthinking remark.

I’m a Very Lucky Person

I’m a very lucky person. I have a job that has been transferred to home for at least the long term. My husband has been able to keep working. All my friends and family are well and healthy. My dogs have learned that when I open my computer they are supposed to groan, fall on the floor, and sleep. I have a roof and food. I’m a very lucky person.

And yet I struggle, mainly with mental health. Only part of it is being at home 98% of the time. Cabin fever during spring and summer is difficult, but not impossible. I’ve gotten stuff done, what with having 2 extra hours a day when I’m not driving back and forth to work. But I get unsettled by how little I actually get done with those extra 2 hours. Obviously, it hasn’t been spent contributing to this website. Negative thoughts creep in accusing me of laziness. I can handle that.

The biggest problem has been the inability to get into the swimming pool. Up to about a month ago, I was having serious issues with functionality and mobility. I couldn’t sit up straight at my home desk to work. I had to lay down at lunch and immediately after work. I could work in the garden for an hour, tops, and only with breaks. Too tired to fix proper food, gaining weight. I started envisioning myself shopping in an electric cart, with a walker hanging off the back, unable to stand straight at the counter while buying stuff. At this point, if that happens it will be my fault. Not a blame game – reality.

And then came a picture. I was at an event with people I like tremendously who wanted me in a picture with them. It was disappoint them and myself or face that damn camera. I faced the damn camera. It was stunning. I had a choice. Continue, die early and miserable. Change, fix the mobility issues, fix the eating issues, lose a little weight, like myself again.

So about a month ago, I started a cleanse. I don’t cook, so I decided while I do this cleanse, if I walk away a little lighter but with a better knowledge about food and how to cook healthy, I will have succeeded. I succeeded. I can cook. I even like cooking now. But I’m only cooking for myself. I had to remove the fear of cooking for other people and trying to please them. I removed it by focusing on myself. Doing it for myself. I didn’t learn to cook to please anyone else except me. I don’t want to lose weight to be a model or to have people look at me. I want to lose weight to maintain mobility and functionality. It’s all about me. As soon as I removed that stress, and convinced myself I was worth it and deserved it, I started to enjoy myself in the kitchen. Cleanse is done. But I’m not changing the food. I liked eating primarily vegetarian – it tasted good. I was amazed. I am, however, a carnivore, so don’t expect me to be changing the world anytime soon. The fact is: I can be satisfied with food completely unlike anything I’ve been eating. I can enjoy myself fixing it. I can feel healthier eating it.

Is the fibro pain gone? Heck no, but the swelling in my joints is visibly better, so my mobility is notably better. I can last longer in the garden. I can sit at my computer at the end of the day instead of laying down, if I want. Life is good. I’m a very lucky person.

Just a little rant…

So we’re well into the second month of COVID-19 lock downs and restrictions. I’m still working from home on a non-ergonomic chair with a tiny laptop screen and keyboard. But I’ve adapted quite well. I’m drinking more than usual (yes I mean alcohol, no it’s not good for me, yes I know that). I’m eating not very well. But I haven’t grown out of my work pants. I put them on today, and they still fit. I’m not adapting well to wearing a mask. My glasses steam up and I feel claustrophobic. But I do it.

I’ve been tested once a couple weeks ago for COVID-19 when I had some unusual symptoms. They were probably stress symptoms. As always, I dragged my feet going in even though I was assured I had to be tested. We don’t need to be wasting test kits on people who aren’t sick and who usually feel like they have a fever even when they don’t and yada yada yada. So I got tested, and it was negative, like always. I should be grateful to be healthy as a horse even though I feel like a jellyfish stranded on the beach. Instead I feel guilty. Do I want to have been positive? There’s a little strange voice in me that says, well yeah. If you’re not positive, you’ve wasted a test kit for someone else who needed it.

I’m angry. I’m angry at the government for not leading. For lying. I hate being lied to. I know there was so much more that could have been done, so much earlier. I know that because I work in a health care environment that has done so much more so much earlier. That’s why I was able to get a test.

More than anything, I’m angry because so many people have died. I’m angry because a dear friend of mine was alone in the hospital without family and friends for a few weeks, not because she has COVID-19, but because she has terminal cancer. She’s finally home with hospice and her family and her friends, on a schedule to see her to reduce the possibility of infection. She doesn’t need COVID, but she needs her “peeps.” Because of the lack of leadership in our government (yes, the richest country in the world, I say with a curled up lip), all our everyday “normal” diseases are supposed to be on hold. People lose their healthcare with their jobs. Get cancer, have a heart attack, have a stroke, get in line.

I’m okay. I’m healthy as a horse. I will be dutiful. I will take my temperature when I have my “non-fever aches,” just to be sure. I will keep track of my natural shortness of breath. It’s not a matter of me not catching a COVID infection and dying. It’s a matter of me carrying it around, giving it to my husband or anyone else who follows after me through a door. I’m staying at home. I’ve been out of my house five times now since March 16. Foraging at the grocery store, mostly. I’m wearing the claustrophobic homemade rather silly looking mask. I’m being mindful. I will take care not to waste precious resources. But I will not ignore legitimate symptoms. I have to be part of the grassroots solution, since federal leadership has grown non-existent, despite the salaries that I help to pay.

Priorities

The other day, one of the physicians I work with said that the peak for the COVID-19 outbreak would be about 18 weeks from now, considering everything we’re doing to try to slow the spread and keep the hospitals functional. My first thought was “working from home for 18 weeks” and “how far out is 18 weeks?” End of July btw.

I had to step back and look at it another way. Gratitude. I have a home I’m comfortable in. I have a job that allows me to work from home. I have a job where I can be productive at home. I have a refrigerator full of food. I have a husband I kind of like who gives me both distance and company. I have four adorable fur-kids who make me only a little crazy with clicking nails and rough-housing. I have a library in my home and still have a pile of books I haven’t read yet. I have a good internet connection. I have Netflix AND the Criterion Channel so I can go low-brow or high-brow depending on my mood. I have writing projects to do.

My bills are paid. My and my family’s bellies are full. I am grateful.

Note the me, me, me, I, I, I? Yeah, need to step back again.

I work with 25 residents/fellow who are trying to learn medicine and how to help people make it through health crises that aren’t even pandemics. They are in the hospital, in the thick of it. A few have had to be tested for the virus after developing a sore throat. If anything happens to any of them or to any of the physicians I work with every day, it will be devastating, not just for me, but for the future of humanity. They are our future, and they are out there with minimal protective gear. We’re doing our best to get them the gear they need. But they’re out there anyway. I’m grateful for every one of them. They are my priority right now. I’m not going to fuss about bills and food and the lack of social interaction. I’ll fuss about them. Not just for 18 weeks, but for as long as it takes.

What’s Worse than Fibro?

A pandemic. Heck yeah. Social distancing. Yep. Coping with a pandemic and social distancing without responsible federal government. Hell yeah. I admit I’ve been torn. Part of me thinks gosh what’s the difference between this and your old-fashioned flu season? I mean it’s been years now that I’ve gotten medication from a doctor for any viral symptoms. It’s always go home and ride it out. Every year people with old-fashioned flu die. Plus we made it through SARS (the first) and H1N1 without society shutting down or hoarding toilet paper. What?

On the other hand, I understand the need to rein in the spread because if all the people who are not immune to the disease (everybody) got sick, then our health care system will crash. I do understand all that. I also understand the illness is devastating for old people or people with compromised immune systems or heart/lung conditions. I have scar tissue in my right lung after my massive pulmonary embolism oh so many years ago which has not resolved, still there. So I need to be careful to not get it, I suppose.

The one thing I do know for certain: social distancing is not good for me. As much as I have a need to isolate and take a break from society and people and stress on a regular basis, I also thrive on contact with people I enjoy, including my coworkers and everyone at work. I don’t like working from home. I don’t like only contacting people through email or texts or Zoom. It’s not good psychologically for me, an admitted introvert. I can’t imagine a genuine extrovert managing this. I am having a certain amount of difficulty with depression as a result of this. Depression and crankiness.

At the same time, I’m sleeping more than six hours a night and my work day has been cut down to literally 9 hours (including an hour lunch break) instead of 12 hours (including drive/bus time). Physically, this is good for me. I’m not pain free. But I am less fatigued by the pain. I could lay down and go back to sleep right this minute, but it would be from depression, not pain. Physically good. I have to remember to be grateful for that. Psychologically challenging. I have to remember to be mindful of that.