Tag: chronic illness

Stanford’s fatigue scale in a questionnaire I was sent

I’m putting this here just for the sake of interest. If you have CFS or Fibro, or wonder if you do, and you have a hard time describing your fatigue to others, here’s a scale that I found in a questionnaire sent to me from Stanford (where I went for some treatment a year ago).

It might be useful for you if you’re having trouble describing what you mean when a doctor is asking you, “What do you mean by ‘really tired’?”

The blue dot is my score. I look down to the bottom of the page. I love that: normal. I really miss normal. I miss being able to exercise.

I loved dancing. I would dance for an hour or more, every day, just bopping around the room to music. Worked up a great sweat, kept all the joints lubricated, and it was just awesomely fun. The last time I tried to dance like that was about two months ago, when Greg got a new wireless speaker and I was testing out its capabilities while everyone was at work/school. The music sounded great. I started moving…carefully. I got into it. Memories came flooding back! I loved it. By the end of the second song I was exhausted. I had to stop everything I was doing and go sit down, and stay there until evening. I slept the whole next day.

It’s scary knowing that I’ve been sick for about 11 years, and slowly moving down the scale every year. Will I hit 1 this year? Next year? What about 0? It’s terrifying.

Good grief.

Life-changing showering apparatus.

In the last two months, this bullshit illness has worsened. Tonight I realized that it’s reached the point where I need my shower bench every time I use the shower. I bought it a year ago, because my hips and low back would seize up with severe pain, and holding onto the stool as I stepped over the side of the tub would give me the extra balance I needed. But it was a convenience item. It had novelty. I only used it for one or two showers out of ten, and if books or magazines were stacked on top from my last bath, I could just hold the side of the tub and be extra slow and cautious. The stool was nice to have around, but it didn’t make the difference between whether I got a shower or not.

My therapist is a great person that I’ve been seeing off and on for a few years. Off when things are calm, on when the panic disorder is blaring for whatever reason. He’s fantastic at his work, a real gift to the profession, and I just stumbled into his office because his address listed him close to my house and I was too anxious to drive any farther. For a couple years I saw him every two weeks, with frequent longer breaks, which, much like the shower stool, felt like something I kept around because it was reassuring to have, but I told myself it wasn’t like I absolutely needed it.

In the last six months, we’ve shifted to every week. I need the therapy. I absolutely receive measurable benefit from those hours. I wish I could say I have to go because I’m a little extra anxious, but all we talk about is coping with CFS. It has come to dominate everything. I hate it for that.

It’s probably going to dominate this blog. I had intended to write mostly about sewing, and then it shifted to where I hoped it would be half sewing and half sailing adventures: a reflection of what I believed would make a pretty great life. But I haven’t sewn in weeks. The work of cutting everything out and getting it together is too tiring, and I’m in the middle of a flare. In the calendar year of 2017, I think we sailed twice. Once during my birthday, when we thought the herb andrographus was turning everything around and we were so full of (mistaken) hope. Now we’ve started talking about selling my little Elska. Greg isn’t pushing for it, he still loves sailing. But he’s said, “I think I’m finally ready to talk about it.” It feels like I have this big, beloved dog, that I have to think about rehoming because I can’t give it exercise.

I’ve been very lucky in some big ways, and it’s felt overwhelmingly important to acknowledge that. I’ve been married for twenty-two years to someone I love more every day. Cheesy, but true. We managed to have two great kids (who I won’t write a great deal about to respect their privacy). And in this ridiculous, unfair, punishing economy, I have access to general financial stability and excellent health insurance. As a non-working disabled person. I mean, come on, that just seems like so much (knock on wood, kenahora). What is there to be upset about? A little fatigue? A little exhaustion? Waking up in pain every day? Not getting anything done? Never feeling like a good parent, wife, or friend? Being unable to finish your degree or have any kind of professional life? Big deal. There are worse things.

I’ve internalized this train of thought. I actively avoid my own negative feelings related to living with CFS, because it doesn’t even seem fair to have them when I live with such good things, too. Those feelings have been piling up for years. Today, in therapy, I accidentally walked right into them (he would probably say it wasn’t an accident). I don’t even remember the conversation beforehand. It was like wandering through the woods, looking up at the trees, and then tripping over a log and stumbling a few feet forward into a clearing, looking up, and realizing you were surrounded by wolves – except not wolves because I love dogs. Maybe bears. But they don’t really hunt in packs. Okay, pretend bears hunt in packs. And aren’t furry, or cute.

Whatever. The point is: doom was inevitable. It was too late to back away. Here it was, and I was meeting it. “Ohhh no,” I thought. “Well, here we go,” and there I went. Within 45 minutes I’d gone through an entire box of Kleenex. As the first wad was rolled up, my therapist pulled the wire trash basket out from under his desk and set it in front of me, without missing a beat. Good job, man.

You see I am used to saying, “Hips and back are really hurting today,” in a friendly, nonchalant way, to explain why I’m not bending over to get something off the floor, or why I need help lifting something. I’m used to saying, “I’m sorry, I’m just too tired right now,” when I get invited to something. Sometimes I say, “It’s been a hard day.” And sometimes I just need to cry because I’m so tired and in so much pain and I hate being so tired and in so much damn pain, and it’s been days since I did anything useful like washed a dish or ran a load of laundry, and I just point to the ceiling (meaning I’m retiring to our bedroom) and say with a cracking voice, “I think it’s time for a let-it-out session.” Greg nods and follows me up the stairs, and holds me while I cry.

What I’m not used to is saying, “I can’t do ______, and it hurts.”

Look at that sentence structure. Doesn’t get much more simple than that. Right in front of me all along, under my nose. I went through a list of things. I can’t do this, that, the other thing. On and on. Big things, small things. Parenting things, life goal things, education things, professional life things. Things that are gone. Plans, dreams, deep desires. For every one I thought of, I cried so hard that my therapist, sitting on his chair in front of me, became a blurry haze of navy cable-knit with a head-shape on top and loafers sticking out the bottom. “Am I even looking at his face?” I wondered, through all the water pouring down my cheeks.

I don’t want to write them all down, the things. My things. It will be different for someone else. The things I treasured doing, the things that made me feel alive, it’s easy for someone to dismiss, and I won’t sit for that. Fuck dismissal. We all come alive with different things. For me, the big things that made me come alive, aren’t accessible to me right now. I don’t know if they ever will be, again. And that hurts.

My therapist said this was great work. I laughed and told him I’d bring him a new box of Kleenex. We talked about how hard it can be to sit with emotional pain, especially when we have within ourselves (and are aware of in others) so many judgements about it. Saying it hurts doesn’t mean you’re proclaiming it will never end or is hopeless. It doesn’t mean you’re wallowing. It also doesn’t mean you’re saying it’s the worst thing ever, worse than anything anyone else has ever gone through. It just means: it hurts. And it’s okay to cry about it.

I must have been on a roll, because later tonight I got home and took a shower, and realized while I was sitting there, my head full of shampoo, that I can’t not sit there. If I stand up, I get too dizzy from fatigue and exhaustion. I can take showers without the bench if I’m very careful and I make them very fast (and I don’t wash my hair that well), but it takes so much concentration (and forced optimism) and when I’m done, I’m three times as exhausted than if I had just used the stupid bench.

I got out of the shower, got dressed, went downstairs, and told Greg about it. I said, “I can’t take a shower without sitting down while I’m doing it.” And then I cried a little. And it was okay. No one judged me, and if they did, I think I’d have felt pretty okay telling them to feck off. I didn’t feel a need to judge myself. This illness is hard. It might get better. It might not. Living with it isn’t easy. It is what it is.

I sat with that awareness for a minute, and then I got up and went into the other room, and sat down with Jason and our friend Claire, and watched Pride and Prejudice. Nothing better than celebrating the acknowledgment of difficult emotions than by watching a love story set in a society actively constructed to avoid the unchecked acknowledgment of nearly anything.

“I think a ball is a perfectly irrational way to make new acquaintances.”

Oh, bookish little weirdo after my own heart. Mary and I are the INFPs in the corner at parties, petting the dog and reading the spines of the books on the shelves.

 

Mr. Collins, receiving the elbow of insolence.

Andrographis caused dangerously high blood pressure spikes, and I had to discontinue

It’s been about three weeks since my last post, where I’d shared the success I had with a supplement/medication that my naturopath from Bastyr prescribed. It’s called Andrographis Plus. The “Plus” indicates it isn’t only Andrographis, it’s also Amla and a blend of other herbs. See the images below:

After 22 days on the supplement, I had my first “episode”. All other episodes were the same:

  • Severe headache
  • Severe nausea
  • Severe brain fog
  • Dizziness
  • Double vision
  • High blood pressure

These episodes would last for 60-90 minutes and were debilitating. I would be so nauseous and dizzy that I couldn’t walk around. At first they happened once every three days, but rapidly began to happen every 24 hours, and then twice in a day. My blood pressure is normally 100/60 or 110/70, and has been stable like that my entire adult life. If I have a bad panic attack, it might get to the 140’s/80’s.

During these episodes, my blood pressure was 180’s/90’s. The highest one we caught was 197/94, and we almost took me to the ER. The headache and blood pressure were tightly intertwined. I could always tell when the blood pressure reading would be high by how strongly the headache throbbed.

As I’d been on the Andrographis Plus for three weeks with no issues except feeling awesome, it didn’t occur to me at first that this could be the root of the problem. I thought I had an entirely new problem, which didn’t seem that surprising considering my body appears to be a weird mess of issues all the damn time.

I went to my regular medical doctor, an intelligent, rational person whom I have great respect and fondness for, and explained what was going on. She was obviously concerned and thought it could possibly be POTS. But that didn’t really fit, and then she wondered if it might be a rare pheochromocytoma, an adrenal tumor that can cause episodes of high blood pressure, headache, nausea – basically exactly like what was happening. When I read the symptoms I thought, “Yes! That’s it!”

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Rediscovering herbalism

Credit to Quinn Dombrowski for this photo of holy basil!

As I write this, I’m drinking lemon balm tea with tincture of holy basil. Yesterday, I’m pretty sure this combination is responsible for what I called in my journal, “Friday’s herbal miracle”. The miracle was that for the first time in weeks, I felt steady. Cheerful, too, and stable in terms of symptoms I was feeling throughout the day. I’m superstitious about talking about it (my husband recently bought me a bumper sticker that said, “I’m not superstitious: that would be bad luck”), but I’m going to talk about it nonetheless.

I have a condition, Chronic Fatigue Syndrome, that has a name. I also have some other labels: Generalized Anxiety Disorder, Panic Disorder, and ADHD. But labels only tell you so much about a person’s experience. You can make a few assumptions safely; beyond that it’s peril to assume too much. It’s interesting to talk to other people who share one or more of these labels. Sometimes we’ll be able to read each others’ minds, our experiences are so similar and have left us with the same fears, the same scars, the same neurotic little habits or perceptions. Other times I can tell that what one person experiences as anxiety, or “lack of executive function” (a common description of ADHD), isn’t at all the same as my own, which I find pretty fascinating.

Anxiety, especially, is incredibly subjective. In my fifteen years dealing with panic disorder, I’ve long since left the clinical definition of a panic attack, not that this stops any new healthcare practitioner from writing anything I describe off as “anxiety”. I saw a wonderful naturopath at Bastyr a few days ago, who asked me what my panic attacks felt like. I had to admit that she’d need to be more specific, I have a range of what I call “panic attacks”, each with its own constellation of symptoms and sensations. I was grateful when her response was, “Really? Tell me more.” I have to admit that naturopaths seem to have great people skills, which is why it’s especially frustrating that I’ve never found one who could help me with anything. Years ago, I came to this very center to be treated for fatigue (what would later be diagnosed as Fibromyalgia). They put me in a peat moss bath, and when that left me weaker and considerably anxious, threw up their hands. But, knowledge of CFS and Fibro has come a long way (not nearly far enough, but farther than seven years ago). I’m really hoping that this new start at Bastyr is the beginning of getting some real help.

Which brings me to my lemon balm tea. After two hours of discussion, my naturopathic doc and her student team came back with their recommendations, which (among other things) included lemon balm tea. I thought, “Tea? Really?” But then I remembered how into herbs I used to be, when my kids were little. I had taken a beginner’s online course through ACHS, and read a lot of books on theory, but hadn’t practiced very much beyond – haha – a few teas, an herbal vinegar or two, and I may have gone so far as a tincture. My interest in alternative healthcare modalities remained, but my interest in herbs kinda slid away. But when my doc prescribed the tea, I remembered learning about how powerful herbs could be, and it got me curious about the field again.

This is a great book. (And it’s not an affiliate link. I go back and forth on my feelings about Amazon, but for now I’m choosing not to use their affiliate program.)

A day later, I bought a book about adaptogens, herbs that are particularly good at improving a body’s resilience to stress. I’ve thought for a very long time that what’s wrong with me, in part, is a very abnormally functioning stress response, so the idea of hebs that could help this, intrigued me a great deal.

Here I will stop and say, please keep in mind I’m not giving medical advice, to people with CFS or to anyone else. I’m relating my experience and my thought processes about my own symptoms, that’s it. It’s important to me that we (people with chronic illness) are able to talk about what’s happening with our health and the setbacks or progress we’re making, but it’s also important to me that even as we suffer from these frustrating conditions that don’t have any answers, that we don’t lose track of the usefulness of western medicine. It’s a hammer, to be sure, and not everything is a nail. But it’s worth noting that I’m approaching this whole thing from the perspective of someone who has checked for nails. My PCP (primary care physician) is very good at her job, and takes me very seriously, and has checked me out for many, many things that could explain the problems I have living in this body. She’s found very little to go on. It’s because I’ve checked for the big obvious things with a doctor I trust, that I’m moving toward the more subtle things.

So, back to adaptogens. One herb discussed with a lot of affection is holy basil. Traditional Medicinals makes a tea I really like called “Tulsi”, which I didn’t know until reading this book is the Hindi name for holy basil, and it’s considered a very powerful herb in India. Under the heading “Modern Uses”, the book talks about many interesting effects, but what caught my eye was its considerable anti-stress properties. It helps regulate blood sugar and cortisol. It reduced the stress of mice “exposed to acute and chronic noise stress” – which is not nice to think about. I’m not a fan of animal research. (It looks as though animal studies are unfortunately pretty common in herbal research if the descriptions in this book are any indication.) One of the authors writes that he uses holy basil to enhance cerebral circulation and memory. He has some synergistic uses (combinations with other herbs) for brain fog due to various things, including perimenopausal symptoms and ADHD. This is only a small part of what the herb is used for, please read the book if you’re interested, I’m really enjoying it.

We’re really fortunate to live near the Dandelion Botanical Company, an herb store right here in Ballard. There I bought some Holy Basic tincture from Herb Pharm. For half a day, I drank lemon balm iced tea, with a dropper full of the tincture. I think I had two tall glasses, and two dropper-fulls of herb that day. The next day, yesterday, I started my morning with that same glass of tea and tincture, and by the second glass in the afternoon, I had gone from feeling my usual new level of awful to feeling….pretty good. It was startling. I didn’t know what to do about it, at first. I had been writing my progress for the morning in my journal, and it’s kind of hilarious how it stops almost mid-paragraph to record that…waitaminute….things are…improving? Shut the front door!

At first I didn’t want to tell anyone, but then Greg texted his usual daily inquiry into how things are going, and I had to say it: “Uhhh…..good!” I said I wasn’t sure why the change, but I think it might be the herbs? Lemon balm is supposed to be great for stress and anxiety, that’s why my naturopath advised it, and then combined with the holy basil, maybe I’d finally stumbled into a modality that had something to offer my exhausted, ravaged system?

Today, I can feel that things are shifting. I slept better. This morning I woke up in less pain. Today has had a similar trajectory to yesterday: feeling not so great in the morning, but then improving considerably an hour or two after my tea. I can’t yet know anything for sure, it’s too soon. Confounding variables abound, and yet, this is the first supplement or medicine of any kind that I’ve tried that has had an effect other than “neutral” or “made it worse”. As the joke goes, “I’m intrigued, and I’d like to subscribe to your newsletter.”

I more than subscribed, I decided to take an online class. It’s perfect because I’m about to be done with yoga teacher training, and if I’m not actively learning something I feel stagnant and go a little mad. So I spent the whole afternoon searching reviews of herbal programs and finally decided to take the Introductory Herbal Course at The Herbal Academy. I’ve bought a few books, but I like having the structure of a course as well.

I don’t know where I’ll end up, but god, it feels so good to actually be excited to explore something having to do with my health. I’m so weary of this whole journey. It’s just a long slog through appointments, people with no answers, test results that lead nowhere, and lately therapy appointments centered on just coping with the damn stress of it all. Learning skills to deal emotionally with exhaustion, fatigue, and the reality that you have a disorder keeping you from fantastic things, that no one can cure or make sense of, and will likely haunt you your entire life. Maybe herbal medicine can help? I don’t know, but (almost) anything is worth a shot.

 

I rented a scooter at the zoo

An overweight woman on a scooter, with a $7 bag of kettle corn in my basket. The whole thing reminded me of an episode about obesity on some evening news program. But it didn’t bother me. I’m too tired to care what anyone else thinks. In the first half hour at the zoo yesterday, hell, in the first fifteen minutes, I felt demolished. My back hurt, my feet hurt, and the weakness was so much fiercer than my old normal (my new, more profound weakness, is my new normal). I had to keep grabbing Greg’s arm when the unsteadiness would hit. The kids were pointing and yelling about something up ahead, but all I saw was a wooden bench under a tree about twenty yards away. A few people were standing near the bench, and I silently willed them to stay standing. Reaching that bench was taking forever. Why did I do this? I looked out at the trees – our Seattle zoo is beautifully wooded – and remembered how much I’ve missed being out, lately. Going places. Just being somewhere else but my own living room. I wanted to be here, I wanted to hang out with kids in an environment that wasn’t home. But was it a mistake? Was I going to drag everyone down? Were there enough empty spots to sit, at the right intervals, to make this work?

We finally reached that beautiful wooden bench, and I sat down. Greg said, “Here, let me carry that,” and took my purse and began stuffing it into his backpack. I tried to be cheerful for the kids, but I couldn’t concentrate when they showed me things. I was so distracted by the pain, by the fear that I might have to leave early and ruin it for everyone. We went on like that, bench to rock to bench to railing, resting every few minutes, the kids traveling on up ahead and coming back to give reports, until I noticed someone rolling by on a scooter. I looked at it carefully, and realized it was a rental. The zoo had rental scooters?! I looked at Greg. “That’s a rental! We could get one! Would it be nuts for me to ride one of those?”

“Huh! Actually, that might be a great idea. Where do we get one?”

We both whipped out our iPhones (our zoo has an app) and looked at the map to see where the nearest guest services station was located. Thankfully not too far. And there was one scooter left! It was $25 to rent, with a $200 damage deposit. For the deposit they just took a rubbing of our credit card, they didn’t actually charge it. The guy said they’d never had to charge anyone the deposit. I got a little well-rehearsed speech about how to use the controls (very easy), and sat down in the scooter seat.

The relief I felt was immediate, and I was overwhelmed with gratefulness. Sitting down, the pain was over half better! This meant I could concentrate! Oh, sweet relief. I can keep up! I pushed the little plastic bar on the handlebar and the machine cheerfully scooted forward. A smooth, even ride. The guy said the battery would last all day. I started smiling! Greg and the kids started walking, and I just kept up! I wasn’t holding anyone back, I wasn’t looking for a place to sit, I was looking where they were looking. “Let’s do the bears next!” I didn’t have to get out my map and strategize how I’d make it there. I was able to take it for granted that I could get to the bears. I could get anywhere. And I could chat with my family the entire way there, instead of spending 90% of my energy just COPING. It was glorious!

 

As glorious as this gorgeous flower, which I posted to Instagram and described as a hydrangea who had changed her mind. Someone commented back and said it actually is a hydrangea, a variety called “lace cap”. I saw these flowers all over the zoo. I took a picture nearly every time. I credit the scooter with giving me the energy to spend the entire afternoon zipping over to flowers and appreciating their charm. One of the best parts of the scooter was how it conserved my energy, so that when I wanted to get up and walk around an exhibit, I could do so with far less pain and zero anxiety.

In the car on the way home. The number in the middle, the 3,543, is my number of steps. I use an app called Pedometer++. I’m estimating that the scooter saved me around 3k steps. While it’s incredibly hard to “pace yourself” with CFS (don’t ever tell a person with a chronic illness to pace themselves, if you want to avoid bodily harm), but in general, I know that I can usually to 3k-4k steps in a day without crashing, assuming other factors (sleep, digestion, etc.) are going well. So I was elated when I looked at my watch and realized I was in a great spot for the rest of the day. I could go home and rest, and probably still have a little left this evening to play a game or hang out with people. That scooter really saved my ass. I’m so glad I made the decision to use it!

 

Here’s a few more photos for family and friends:

 

We loved the penguins the best, I think. We gave them names and told stories about them.

 

This penguin is a baby. Beth named her Barbara.

 

It was a warm day, and this orangutan was high up in a hammock, with a bucket over their head to get some shade! Aww!

There is a butterfly garden now, a permanent installation!

 

Flamingos are simply fantastic. And remind me a lot of the mid-80’s. My favorite eye shadow in 6th grade was this color.

 

Miles got a blue ICEE, it stained his lips and teeth. When I told him he was adorable, he said, “Yeah, I get that a lot.”

 

 

If you don't have a chronic illness, don't talk about your spoons

EDIT May 18th, 2017: Several people have written to ask if they “count” as a spoonie because they have a mental illness like anxiety or depression. Yes, yes! It’s right now 6am in Seattle, and I’m about to leave on a trip with my husband to California to visit the Stanford Infectious Disease Clinic, where Jose Montoya is doing research into what causes Chronic Fatigue Syndrome. I’m going to be a new patient, and see if they have any treatments that might help me. I’ll be back on Saturday, and I want to write more about this, but in the meantime, I want to apologize for failing to clarify what I mean by “chronic illness”. ANY chronic condition that causes fatigue, is a chronic illness. I’ve lived with panic disorder for over a decade, I’m painfully aware of the fatigue that it can cause. Depression, cancer, anything that is chronic and causes fatigue, is what I mean when I say “chronic illness”. In my case, the people using “spoonie” around me in a way that made me feel invisible are normal, healthy, without any chronic issues other than the usual aches and pains of being human. They have no illnesses, physical or otherwise. That was the group I was referring to in talking about my frustration about their co-opting of “spoons” when they just mean “low energy”. 

 

The terms “spoon” and “spoonie” have shot into popularity among people living with chronic illness, as ways to describe their experience and themselves. Talking about “spoons” is a reference to energy levels. It comes from a personal story that Christine Miserandino shared on the internet around a decade ago, where she compared the daily allotment of energy that her illness allowed her, to a handful of spoons. Sitting in a cafe that day, her purpose was to explain to a friend what it was like living with a chronic illness, and holding out a handful of spoons was her spontaneous idea to illustrate how much energy her healthy friend woke up with every day. She began pulling spoons out of her friend’s hand to demonstrate what we all know, how normal activities of daily life will lower energy and make the average person progressively more tired.

Then she started the process over from her perspective. She took most of those spoons away and showed her friend what was left. This was her way of saying, “And here’s how much energy I wake up with.”

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Let's call it, "Two thousand and Sucksteen"

trumpThis has been my year, but I’m not claiming it’s the worst. People around the world are having years of suck that make mine look like a fantasy of unicorns and daisies. In the US, many of us are just depressed. If you’re female or gay or black or Mexican or Muslim or you care about the environment in any way, then the election season may have brought any optimism you felt about your fellow Americans to a brutal and crushing halt. Personally, I’ve moved through different stages. Shock, grief, awe, confusion. No real positive or super pro-active stage yet. I guess I have developed an addiction to bowls of breakfast cereal and almond milk that is probably foritifying me with vitamins and minerals I didn’t previously get enough of. Maybe that’s a plus?

I feel like I’m settling on, “My heart is broken,” which isn’t good. I don’t know what to do anymore, as a citizen, as someone with an exhausting chronic illness, to stop the environmental destruction we’re doing on a global scale. Social justice needs a lot of work, but there I feel more optimistic. There I feel I can make a small but noticeable bit of difference, so it sucks but it’s a suck I can at least attempt to bring meaningful change to. But the environment? It just feels like doom. Unending doom. I’m not coping well. We’re killing the planet. I can go vegan, I can drive (or not drive) my Prius, I can reduce my use of plastics, I can do a lot of things, but in the end it just isn’t enough. We don’t have enough people in power caring about this, and it’s going to kill us all.

But it wasn’t just Trump. The year 2016 managed to suck in a lot of other ways.

Jiminy Cricket got squashed

In the first part of the year, a friend stopped speaking to me (and by extension, her whole family stopped speaking to my whole family) after I wasn’t supportive of her burgeoning relationship with an older married man. My whole family was blindsided. She’d been acting odd, but whenever I asked if we were okay, she said that me constantly asking this was wearying her (Really? Tell me about it). She said I was imagining things. Then she told me I was the sister she never had and I should never doubt her affection for me. This is gaslighting, and it’s a shitty way to treat someone.

I stopped bothering her about it, thinking she’d just come around when she felt ready to explain what was happening. Unfortunately, it only got more surreal. She came over to our house for our regular social night and didn’t speak to me. In front of mutual friends. For the entire evening. I actually had a panic attack and had to go upstairs and find my anxiety meds, my hands shaking. I hadn’t been treated to the silent treatment since the 5th grade, and experiencing it now was just as gross and awful as it was then. When she and her husband left (he’d made a heroic effort at small talk with me that night, I thanked him for that later), everyone in the room turned to me and said, “What was that?” If all these people hadn’t just seen it happen, I’m not sure I would have believed what I’d experienced. Who treats someone like that? What has to be wrong with you?

Finally, when she and her new guy friend dropped me on Facebook on the same afternoon (he and I had been friendly acquaintances from guitar camp, and had no conflict), it dawned on me what was happening. Of course. How could I not realize? I hadn’t been supportive of this one thing in her life, and that’s when all the weird treatment started. It was so obvious, in retrospect. But our family was in shock. We weren’t sure how to respond. Are we really not talking anymore? Did she actually just sever connections with all of us through Facebook? 

We wrote to her husband something like, “Uhhhh, we don’t know what just happened, but what just happened?” He sent an apologetic and understandably cryptic reply. He said our son was still welcome to email him about gaming stuff. A few days later, I imagine under duress from her decent human being of a spouse to offer some explanation to the people with whom they’d spent two years socializing with every week, my ex-friend sent me an email that explained things had gotten “tense” and she was moving on.  Just a notice of vacated premises. The chilly lack of apology, in stark contrast to her warm (very well-crafted) public persona, made me (and us) feel so stupid. How had we gotten so suckered in?

As a public service, and to avoid drama in the future, I made up this handy flowchart for any other married people who may need to decide whether they’d like to share with me any extra-marital feelings that may be developing:

flowchart

Note on tone shift: I had Greg read this post, as he reads all my posts before I publish them. He’s my feedback guy, my spellcheck. He said, “I think it’s great, but there’s a tonal shift here. You’re pretty serious above this, but you have more elements of humor below. It isn’t something you need to change, but it’s there.” I thought about this. It’s because I’m still angry about how I was treated by my friend, so that part is less funny. I’m generally Chandler-esque, I deal with negativity by using humor. In the case above, I haven’t gotten there yet. Especially after I found out the damage to others, unrelated to our family, that happened because of the choices made in these circumstances. It was truly a long game that was played, and it was very cruel. I was not the worst hurt. So, I’m not finding it funny yet. In time, I’ll be able to joke about it. 

And then our kitchen exploded

water-dispenser
NOT AS INNOCENT AS IT SEEMS

Most new refrigerators have a water feature. You can push your glass up to the fridge door, press a lever or a button, and water comes out of a little spout and fills your glass with exactly the same stuff that comes out of your sink. [throws up hands] [moving on].

Somehow there came to be a leak in this hose on the back of our fridge. Because our house is over a hundred years old and was put together by drunk, blindfolded ferrets, the floors are all uneven. This means that after the water leaked down the fridge and onto the floor, it ran downhill to the dishwasher six feet away. There it pooled, and then gently seeped out into the floorboards in front of the dishwasher. And this meant that for two weeks we thought our dishwasher was leaking, when really, the water was seeping through the floor and creating a flood in a basement storage room that we rarely enter.

But we didn’t know that. because it really looked like the dishwasher was just having some sort of midlife crisis (I hear that happens in your forties). We tried a different seal. We tried cleaning the filter. Nothing worked. We were at the point of discussing a call to a repairman, when the dishwasher caught fire and ended the discussion. Due to (one would assume) the puddle of water it was sitting on, it shorted out. The entire house began to smell like melted plastic and broken dreams. Thick grey tendrils of smoke were pouring out of the dishwasher buttons. It really did feel like watching the soul escape the body.  Jason, usually the most safety-conscious of the household when it comes to home repair, bent toward the door. “Let’s just turn it on again and see what it does.” Greg and I yanked him back.

At least we didn’t have to deal with the leak anymore. Agreeing we’d buy a new dishwasher in a few days, we set about getting a dishrack so we could do dishes by hand. But then a couple days later, the floor in front of the dead dishwasher, commenced squishing. And when we stood in the right spot, water dribbled up from between the floorboards and pooled around our feet.

It was at this point we knew something was very, very wrong.

Maybe it was some tiny leak under the sink? We cleaned everything out and searched. Nothing. “I wonder what’s directly under that spot?” I said. “Maybe it’s a pipe? I’m going downstairs to see if I can see anything suspicious.” I looked around and made a mental note of about how many feet the puddle was from the surrounding walls, so I could estimate it from below. But all that thoughtful measuring was for naught because it turned out WATER WAS STREAMING DOWN THE ENTIRE BASEMENT CEILING AND FILLING THE STORAGE ROOM. If I’d realized I’d be writing about this on my blog nine months later, I’d have taken a little movie so you could experience the cascade, and hear my screams.

Panic ensued. There was a lot of cursing. The ceiling was raining! Ceilings are not supposed to rain! Boxes, furniture, blankets, everything was soaked. And that horrible, sickening realization that the whole time we just thought it was a few tablespoons of water leaking out of the dishwasher every day, water was draining literally out from under us into the lower floor. We bolted back up the stairs and called an emergency plumber. He turned off the water to the house, and spent an hour trying to diagnose the problem. Once he realized, he said, “Oh yeah, those hoses are a real problem. I don’t know why people install them. This happens all the time.”

ALL THE TIME.

ALL THE TIME.

Listen up, everyone-who-owns-a-fridge.

The plumber got the leak stopped, and for a few blissful seconds, we stood there in silence. What a relief. Water was no longer filling the basement! Then we looked around, taking it all in. It was dawning on us what a project we still had. Yes, this was going to be a big mess to clean up. Maybe we hire someone to come in and help us with the basement? That’s when the plumber threw up his hands. “Oh no,” he said. “You can’t just clean this up with towels and bleach. You can’t just dry things off. It will all mold. You need …[dramatic pause while all the homeowners in the audience grab their seats]… FLOOD REMEDIATION.”

I think at this point all three of us, Greg and me and Jason, who all co-own the house, were having little aneurysms. Greg and I had left a cohousing development many years ago, after our community suffered a protracted legal battle with the original builder over mold in our main building. We were familiar with mold and water damage, and it was not something we wanted to go through again. Jason is averse to risk, averse to large homes, averse to old homes, and averse to any intersection of these. He had only agreed to buy this old beast because he could walk to a cafe, have a garden, and because when I first entered the house I fell to the floor in a dramatic flourish, grabbed the leg of the current owner, and started begging to be allowed to live here. Not really. Maybe a little.

And I still maintain that this is the best house we’ve ever had. But this was not its best year.

What ended up happening was this:

For weeks we had these fans running. The constant noise was exhausting, but what was worse was not having access to our kitchen. They had to tear out the sink, cabinets, and then the floor. Guess what they found under the floor! More floor. Turns out the previous owners had just kept stacking new flooring on top of old, and by the time we’d peeled it all back, we now had to deal with asbestos remediation. Add on two weeks for that. Then problems with the new dishwasher, with the pipes leading downstairs, with the electrical outlets, with the painting……

This post is already too long, so I’ll just say this: THREE MONTHS LATER, our kitchen was back. I never want to go through this again.

And so I gained 15 pounds

lisa_simpsonThanks to not having a kitchen, eating too much take-out food, buying a lot of snacks, and generally being under a lot of stress, I gained fifteen pounds. I’m already overweight, and with the fibromyalgia, the pain gets much worse with extra pounds. Picture the worst ache you’ve ever felt after a workout. Now picture living with that, every day, without end. Picture waking up every day and feeling like a truck hit you. And now picture that every morning you get out of bed, you’re forced to put on a 15 lb backpack and carry it around all day. See what I’m saying? I’m not saying fat is bad, that being fat is bad. I have a lot of fat love, I’ve worked hard to accept my body. But at this point, extra weight on my chronically-ill frame isn’t anything but extra agony. It isn’t a political issue, it isn’t anyone else’s business, and it doesn’t mean anything other than this: weight means pain, and I need to be lighter. I will have to deal with this, this year.

And then my friend died

Last September, a very good friend of mine called me on the phone, and then told me to sit down. She’d found out she had pancreatic cancer. I don’t want to write more about this, I wrote about it here, and that was enough. I miss her terribly.

So the fibro got worse

I need to write about this more, if only to add to the solidarity of so many fibro folks writing right now. The experience of living with this disease/syndrom/whatever the hell it is, is so taxing to the body and soul. And this year it really kicked itself up a notch. Stress + grief + weight gain = fibromyalgia flare-ups. I had a really awful end-of-summer and fall in terms of pain. I did, however, get on the waiting list for a program at Stanford University that will hopefully help me. I should get the call toward the end of summer 2017, and then we’ll fly down there, do some tests, and see what we can see. My fingers are crossed. In the meantime, I’m dealing with new levels of pain and fatigue. I’m very unhappy about it. And I wasn’t able to go sailing much at all, which deserves its own heading.

Which meant I wasn’t able to go sailing much at all

I love my little twenty-foot Flicka, Elska. She’s my dream. I’ve sailed her maybe a half dozen times in the last nine months. Greg’s new plan is to get good enough at docking that he can essentially take her out without my help. If he can single-hand her, that would mean I could come along and not worry if my energy pooped out and I spent the whole time sleeping in the forward berth. I still really don’t like the idea of going out when I’m this weak. If I fell overboard, I wouldn’t be able to get myself back in the boat. And I know he wants to learn to dock, but I’m such a control freak, I don’t wany anyone else docking my baby. This might be the last year we own a boat, and if that’s true, my heart will break. I had big plans for this part of my life. Crossing fingers here, too.

And then Orange Man got elected

For weeks Greg had been telling me, “Just stop reading the news, it’s fine, Hillary has it.” Election night was sickening. We couldn’t believe what we were seeing. Watching that map turn red changed my belief about our country, and the people in it. I have friends outside the US, and not one of them could believe what they were seeing. “How can you people elect someone like that?” I kept hearing. I don’t know. I have no explanation. Articles abound on how this happened, I’m not an analyst, I won’t speculate. I just know that it made me afraid. When intelligence isn’t a value anymore, when logic ceases to have influence in an argument, when evidence is reduced to opinion, when all that matters is money and who has the most of it, what will we become?

And then we got sick

First Greg was sick for three weeks. Then Miles got sick. Then I got sick. Between Thanksgiving and Christmas, right when all the holiday chaos needs to be taken by the reins and steered into presents, a tree, wrapping, cookies, meals, organizing….was right when we were all laying in bed, trying not to lose a lung every time we coughed. It was the worst illness to hit our house in years. We’re still recovering our strength, and now…..Greg is sick again.

And then everyone died

Seriously, have you seen the lists? Elie Wiesel, okay, he was 87 years old. And John Glenn was 95. But Alan Rickman? Prince? George Michael? DAVID BOWIE? And then we lose Carrie Fisher? And then Debbie Reynolds a day later? And that’s just my heartache of the list, there are dozens of others! If ever the acronym WTF was more apropos, I don’t know when. What is UP, universe? I was praying for God to keep Betty White safe.

golden-girls

There were good things, too

The year wasn’t all bad. I started yoga teacher training! It’s wonderful. I re-discovered two friends I’d had for years, who worked together to get me through my rough patch where I basically wanted to look at all humans and hiss. One of them lives a few hours away, but the other is closer, and I see her every week. She’s part of the family now, she has her own key and just walks in (I love that). She eats from the cupboards freely. I tell her she’s going to retire with me someday, and I’m completely serious. I’m adopting her. I’ll admit I’m still skittish around new people. Especially very friendly people. I find myself thinking, “What are they hiding?” But I’ll get over it.

I also -rediscovered sewing, and that was the best craft therapy experience I’ve had in years. Even better than knitting, and I didn’t think anything could be better than knitting or spinning. It’s right up there with ukulele. Sewing made me feel enraptured, artistic, creative, inspired, and all for only a few gazillion dollars in fabric and a new serger. BARGAIN.

Also, I hated that ugly blue tile in the kitchen, and now I have black and white tile. So that’s nice.

And this year I didn’t lose two dogs to freak illnesses. That’s something.

I’m glad 2017 is here. Knock on wood.

im-done

Still sewing, just too tired to write about it!

Still sewing and wanting to write! I’m just worn out from a combination of fibromyalgia, and yoga teacher training, and trying to clean and organize the house. Additionally, I plan on moving the blog off of the WordPress.com site and onto my own site, but it will take a couple of weeks to get that set up. Once that’s complete, posting will return to a more normal schedule.

In the meantime, here’s a few of the things I’ve made recently:

A raglan using the Patterns for Pirates raglan pattern I love so much. So far, this is my favorite t-shirt pattern. If you don’t use contrasting fabrics, it just looks like a normal shirt. The fit is great on me.

Adorable Midnight Slippers! I had one little error with the serger, it didn’t quite pick up all of one toe, so I had to sew a patch. I love patches, though, so I never consider that a real problem.

This is the raglan from above, but with the long sleeve option. Rainbow sleeves, baby! I have several yards of that fabric, I’m saving the rest for something amazing. It’s one of my favorites.

Verity Hope’s Smock Pinafore, which is fast becoming one of my base wardrobe patterns. I’ve made four of them. For about two weeks, I just alternated between them, and with the ability to add different colors of shirts underneath, I never felt like I looked the same day to day. I bought some linen to make some more, but now I’m thinking of putting that toward a pair of linen overalls. I’ve been waiting a long time for overalls to make a comeback.

This is just a tank dress that I make using the Dress No. 1 pattern. Over time it’s proving not to be great for knits, however. It needs some fit modifications, it gaps in the back a bit too much, and I want to change the shape of the arm scythes. I think this will just take some skimming of a book on fitting, but I haven’t gotten the time and energy for that yet. Nevertheless, I love this dress and wear it all the time. I’m wearing it right now, in fact.

So, sewing is still happening, and the desire to write about it is definitely there. But, I’m tired all the time. Thus is the life, living with fibromyalgia. In the next few months I will hopefully get a call for a trial of new treatment. I’m on the waitlist. I think about it every day, wondering what might happen if it works. What would it be like to feel better? I go between daydreaming about it, and pushing it out of my mind so I don’t get too attached.

Until then, I take it day by day. Stitch by stitch. Asana by asana. I’m looking forward to getting the blog moved, so I can work on the design, and write on a more regular schedule.