My pain continues to get worse and every thing we are trying to do to improve it is only helping in so far as my completely sedentary lifestyle is tolerable - not pain free, but tolerable. As long as I don't sit or stand too much, I can function. But I can't eat out, or go to concerts. I can't drive. I can only work because my job is letting me work from a recliner and my income is enough to let me take Lyfts to work (which is making finances very tight).
Because I have a history of endometriosis and the pain I'm experiencing is like cramping, I'm considering having yet another surgery. The trouble is, we have no idea what they will find. Endometriosis can't be seen in any kind of scan. I've had one surgery where they didn't find any.
My pain is so hard to manage that my recovery time is predicted to be very long. In the past I needed far less medication to keep me going. This is due to an overstimulated nervous system according to my pain specialist. So we are worried about post surgery pain management, but she says it's doable.
But there is hope, or otherwise I wouldn't be considering this. There are doctors who think they have a new understanding of endometriosis. They remove tissues that didn't used to be considered endometriosis. They use a technique called excision surgery. They see a strong correlation between adenomyosis and endometriosis and pelvic pain.
I am now visiting with each of the surgeons in my area that does this. I'm lucky that there are 3 to choose from. The first suggested a hysterectomy, and had a really cogent reason for suggesting it. (Please please, no hysterectomy stories or opinions. I've spent hours researching this and reading all the opinions out there.)
If this surgery works, it could be my last one. I might recover and live a life I never knew was possible. I might be able to leave chemically induced menopause behind. I might be active and healthy.
But there are many risks. And not everyone is convinced this will work. I keep being cautioned that it might not. So far only one doctor is convinced I'll be better off and she's the surgeon that suggested this approach.
I'm, as usual, frustrated that there is no way to know if there is anything to find. I'm frustrated that this disease is only diagnosed by surgery. But that's where I'm at.
So two months of interviewing doctors (due to their schedules), and then I'll schedule the surgery. Interviewing surgeons is a new experience for me, but it's important for a rare surgery to choose your surgeon carefully.
There is a very important life lesson that I've learned in the last 40 years of life. It's something that has freed me from so much suffering in the last year. As a friend once put it "Expectations are a way of figuring out what will disappoint you, ahead of time."
Let my give you an example drawn from my life. In July the doctors asked me 5 pain scale questions. They asked me the same ones two weeks ago. The difference was exciting to my pharmacologist, my numbers had gone down. "Oh no, my expectations are now different." I'd changed my basis for reporting pain. I started giving the numbers based on my recliner life, not based on how I feel when I'm active. (Luckily taking meds plus not doing active things substantially improves my pain levels, that includes cooking, tidying, etc, but hey, it works.)
That might sound negative, but I can only live with that I have. If I keep chasing pain free ness, I'll just suffer all the more.
If I can let go of expectations, of how my day will go, of how my week will go, of how my year will go, I open myself up to more joy and less suffering.
I expected by now to be free of pelvic pain, getting in shape, cooking, doing photography, etc. I did not expect to write 4 songs in 4 months, start writing sheet music, start writing a musical, sing at work, or to start a hobby involving playing with dolls.
I hoped my spiritual practice would deepen but I expected that would happen as a result of the important retreat I was FOR SURE going to go to in Mexico in Oct. I didn't foresee that working on calming my autonomic nervous system would finally give me the motivation I needed to become a more grounded human being. That change has been profound.
We learn to plan, planning helps us execute long term goals. But often we aren't taught how to break from the plan. We aren't taught what to do when the plan needs to change. We start believing the goal will happen, because we planned for it. As we learn that plans go awry, many of us double down on planning. The more contingencies we plan for, the more the goal is assured.
I've learned to let go of my faith in the plan. Planning is a tool, but a more important tool is opening myself up to possibilities. And often in those possibilities I find something unexpectedly amazing.
We live in a culture that assumes that anyone who lives correctly will of course have health, financial stability, be well treated by others. And if we look around we know that isn't true. It doesn't take much to realize the counter examples are more numerous than the people who have all those things. But we still believe in it. We believe in it because we are told if we lose sight of it as a goal, we'll never have it. The truth is, when we let go of those expectations to take care of ourselves, we open doors that might just get us there.
IBS - the disease that makes others around you uncomfortable too
I'm considering working from home for the 3rd time this week not just because of my discomfort but also because of that of others.
I have constipation dominant IBS. When I have problems I have frequent visits to the bathroom but they aren't loose stools. To retrain my body I'm taking supplements that are making things worse in the short term.
But the biggest problem right now is the gas. It's been smelly and somewhat uncontrollable. It's awful to realize what you have released into the room and how uncomfortable and kind everyone standing near you is being.
And I feel like given my pain issues it would be good to be honest about why I'm out. People are worried about my pain more than my other issues. I don't want them to be worried I'm having another setback.
I just don't think my boss and PMs want to know about my gas. I mean, we are all adults, but this kind of issue is just as taboo as talking about my pelvic floor.
These chairs literally changed my life. I went from needing to stay home because I needed to lie down to "have my own furniture, will travel".
Maybe one of these will help one of you, or someone you know in pain.
My life aide: A portable, camp chair recliner that fits into a bag you can sling over your shoulder.
Needing to lie down all the time makes going places hard. I started being really bummed about missing Sangha, but my patio recliner while portable was a logistics nightmare. Then when looking at recliner options I found the Seatopia. (It's what I used at the reception)
The Seatopia is relatively comfy and 10 lbs. I go to Sangha after work so I have to take any chair to work with me. Where the Lyft drops me off is a 5 minute walk from my office (gotta love office campuses) so I use a golf bag wheelie thing when I go there.
I like the Seatopia but it has two settings, lying down almost flat and sitting up.
The Khore is heavier and shorter. It hits me at the ankles. But it's lying down position is much better for talking to people, and I hope, watching concerts.
Unless you are going to the beach or Theater in the Park, using either of these requires something hard. You have to ask for people to make room for them. You have to ask to take up space. Sometimes people say yes.
The more often we ask, the more often we can leave the house. The more often we ask, the easier we make it for others to ask.
Three weeks ago my biggest pains were muscle pain from having to build my body up to strength after 9 months lying down most of the time. I was out for brunch with my partner, an activity that I had just started being able to do. I felt almost giddy about our plans - going art supply shopping, food shopping, going home and recording some music, grilling in the backyard.
The pain came back during brunch. While we were doing all those activities my pelvic pain went from not bothering me to needing to lie down. I haven't recovered from this set back yet.
Coincidentally, I'd finally had the confidence to tell my job that I'd be transitioning out of working from the recliner. We'd started feeling confident that my life was going back to normal. I was ready to start driving again.
This setback might be the hardest thing I've faced in my life. Usually my pain comes on slow. Usually we have a suspicion of what's wrong. Usually I have time to get used to things. But not this time. This time my world shrunk in a period of 3 hours from being able to do the things I wanted, to needing to stay home and in the recliner. And we don't know why.
My therapist, thank goodness I have her, could tell that I was struggling. She told me I shouldn't be upset with myself for being unhappy, angry and scared. She knew exactly what I was going through emotionally.
I've been through a lot of pain. I've had so many painful and difficult treatments and tests. I've had reasons to be scared. But through it all I was a someone with a positive attitude, full of gratitude. I didn't know who else to be. After all, I had good doctors most of the time. I had jobs that accepted me. I had good friends.
I'm not able to squash the fear, anger and unhappiness right now. I appreciate the things that are going well, but that appreciation is along side my other emotions. I've been trying to dip into my coping mechanisms, and they help a little. I'm currently waiting to talk to my PCP about new options.
And I'm writing this to tell you, that it's ok. It's ok that I'm upset. This feeling is natural. I have to let it happen. It's ok that my partner is worried and upset. It's ok to try to distract myself from these emotions, but mostly I'm allowing them to happen. I'm trying not to get caught up in stories about how bad this is, but I'm not pushing away the fear.
Allowing your emotions, the good and the bad, to abide inside you and to feel them - it's hard. I'd love to just throw myself into something so I could not feel this way. But right now I'm trying to learn to just notice these feelings and not get swept away. It's something psychology recommends and it's part of my Buddhist practice.
It's ok to be upset. It's ok to not always feel grateful. It's ok to let yourself be unhappy. I think all too often people want us to cheer up. But it's ok not to. It's ok not to want to. If you feel unhappy, scared, or angry because you or a loved one is sick, this is natural. You don't need to be strong all the time.
Just be kind to yourself. Breathe. And if you need to take a break from your feelings, distract yourself. But don't let the world tell you that you always need to cheer up. You don't.
I've suffered a major set back in the last three weeks. I went from being decidedly on the road to being able to sit up and stand without pain, and all the progress disappeared in 3 hours. It's been very hard. I was used to being able to do things and now I'm back to living and working out of a recliner. Even taking the Lyft to work makes things worse.
One of the ways this has impacted my life is that I'm not as patient with my limitations as I used to be. I finally started seeing friends again and doing some of the things I used to do before the pain got bad 10 months ago. And I wasn't willing to go back to staying at home.
This last weekend I was helping with a wedding, I wasn't willing to give that up. But I also didn't know how to accommodate myself. I brought a camp chair recliner for an emergency, and I used it. I put it where I was sure it wasn't in the way. I didn't think to put other chairs near it so people could talk to me. I didn't bring a more substantial chair that lets me recline at an angle that reduces the pain but let's me see eye to eye with people sitting. And the reason I didn't was embarrassment.
The bigger chair is heavier, klutzier. I might have needed help with it. It would have been more noticeable. And that would have drawn unwanted attention. Like many people with invisible disabilities, my needs don't make sense to the casual observer. I can walk and move in almost every way I could before, it just hurts. I can carry my own reclining chair. And the fact that I can do those things, but still need the chair doesn't make sense.
I know many people who use wheelchairs have similar issues. If you can stand and walk some of the time, why do you need it? And yet, at least a wheelchair is something people are used to seeing people use.
I've often marveled at the fact that people who see me in the recliner at work, or in other environments, jump to the conclusion that I just want to be comfortable. "Oh that must be so relaxing!" Nope. It just keeps the pain from preventing me to work. And explained l explaining that all the time is exhausting.
The embarrassment I feel is because I use the chair so I can enjoy normal activities - seeing friends, meeting with my spiritual community, going to a wedding. But by using it, I spend a great deal of me time explaining why I need it. And then answering questions. And explaining that yes, sometimes they don't know how to get rid of the pain. Yes my body works, it just hurts all the time. Yes I'm taking medications. No, I'm not addicted to my pain meds. No, taking them for so long hasn't made them ineffective. Etc, etc.
I didn't want to deal with that at the wedding so I waited too long to use my chair. I also didn't bring other chairs near it so that people could spend time with me. I didn't want the attention, I just wanted to enjoy the wedding.
At a time when even wheelchair users know that most of the places they go won't be reliably accessible, it seems like a difficult ask to be allowed to bring your own furniture. It's easier just to stay home.
I'm realizing that while it's frustrating to answer all those questions, it also paves the way for other people to get out of their homes. Every person I explain it to might know someone who is house bound, but could go places if they knew there are reclining camp chairs that fit in a bag and they can take with them. By working in the office out of a recliner instead of working from home, I normalize this way of working. Who knows how many of my coworkers might some day be asked to accommodate someone this way. Maybe when they are asked they won't wrinkle up their noses.
It can be uncomfortable to ask to be accommodated. It can be frustrating to have to answer all the questions (which I'm pretty sure everyone with any mobility aids gets peppered with). But when the other option is isolation, it's worth it.
Transhumanism - the idea that your consciousness could go into another body - has been on my mind a lot recently. John Scalzi's Lock In books are not quite about transhumanism but are similar. In the books people suffering from complete paralysis get robot bodies they get to move around so they can travel and relate to people.
I think anyone with chronic illness has thought about these things with yearning. If only I could get a new body, even for an hour. Maybe for that wedding I'm going to this weekend.
But the last two days I was thinking about the brain, mine in particular. I've been able to make up dances on the spot as long as I can remember. It doesn't seem strange to me to be able to do this. I've been dancing for so long, and have learned so many things, that it just happens. I even studied an extemporaneous dance style. I don't think about the next move, not consciously, but clearly my brain does. It then relies on muscle memory for the rest.
Right now something similar is happening with music. I sing stuff, it just comes out, I see if I like it. Then I hear the chords, the arpeggios. It Just happens. Now I learned to do this. I have been doing VMT for 2.5 years now and that's a highly improvisational paradigm. I've listened to a lot of music my whole life and played piano for 10 years. Even though I don't know much chord theory, somehow my brain has figured it out.
Everything we do creates or solidifies patterns in our brain. Muscle memory is a real thing, connecting our muscles to brain patterns. But what about the parts of my brain and body I wish were different? How do they impact my ability to write music? I don't think anyone knows, not for sure. All the brain pathways that light up my pain center because the barometric pressure changed or because they just are stuck in a cycle - maybe they make a difference. And if my muscles were different, would my muscle memory work? Would I become a different person if I had to learn to work with different muscles? Does my IBS effect my serotonin levels? Without it, would I be happier or less happy?
I'm not happy about the pain I'm in. I'm not happy about not being able to eat gluten or dairy. I'm not happy about how my IBS makes me get up 2-3 hours before I leave the house, and sometimes means I can't. I'm not loving recliner life, even if it makes things more possible for me.
My brain and my body are part of one extremely interconnected unit. It's one medicine only partially understands. And at least for now, if I love my creativity and my capacity to solve problems, I need to acknowledge that my body is part of those things I love.
I'm not saying everyone should have this attitude. It's hard, and I'm not sure I would embrace it if I had different things wrong with me. But I find it brings me comfort.
Grief for the person I was before pain and how I deal with it
There's a kind of grief you have when you're sick. Most of the time I feel it. I enjoy what I can do. I give myself space to deal with physical pain. I embrace what I can.
Today I was lying on the floor at Voice Movement Therapy and singing and it was wonderful. I felt strong, even though I knew I couldn't move much or I'd feel worse. I saw some dear friends today too. And I was feeling good, despite it being a worse than usual pain day.
I've been trying to learn to embrace my voice in the higher registers. I never used to sing high but I can. So I was thinking tonight about songs to practice, and I thought of a song I have sheet music for. I used to love to play it on the piano. And I wanted to do just that.
It hit me like a punch in the gut that I can't. Then the can'ts built up. I can't sit up and sew pockets into my skirts. I can't go on a walk. I can't go to a party even if I'm guaranteed a seat, not unless I only want to stay an hour. I can't dance. I can't even do all the chores I wanted to do this weekend because my body is keeping me in this recliner. And my doctors, for good reasons, need me to stop pushing my limits with pain.
I'm not sure what the healthiest thing is to do with that grief and fear. I miss being able to move so easily. I miss being physical. I don't know how or when I'll get back to any of that. I trust in the pain treatment plan we have, but it's a slow plan, and it might not work.
For now I'm crying. For now I'm letting myself grieve and love the person I was. And tomorrow I'm sure I'll find something to enjoy. I usually do. And sometimes I need to force that grief to wait. Sometimes there's work to do, or someone needs me, or I just need to be ok for a while.
I know this, that if I keep having these limitations I'll figure out a way to live with them better. I'll get a reclining wheelchair so I can go places. I'll find ways to move in water that make me feel well. And it helps to have that plan in place. It helps to be realistic that we don't know that this treatment plan will work. That's another way I deal with the grief.
But I'll be ok. I know this even when I'm grieving. I may or may not get stronger, but I'll find things I love and enjoy. And I don't need to force my grief aside to get there. Sometimes it's the best thing for me just to feel unhappy for a while because that's the most caring thing I can do for myself.
How to Relax - lessons from a person with chronic tension
I have chronic tension problems. My muscles are hardwired to tense up. I also have a chronically keyed up nervous system. And I have chronic pain.
Due to all these issues, I had to learn how to relax. It's literally part of the physical therapy and pain management I've been prescribed. Years ago I learned to relax my muscles. It's still not instinctive but it's something I can do with connection l concentration. And now I'm learning how to calm my nervous system.
I want to stress that while it's nice to approach that techniques with an open mind, these worked for me despite extreme resistance and skepticism at the beginning. I was angry that they were asking me to do this thing that clearly didn't work. And it did. I've had ten years to keep learning and investigating what works for me. Here are some techniques I learned and use - including a simple self hypnosis technique for anyone who can't relax their muscles.
Very important: try to breathe evenly when you do these exercises. Many people hold their breath when they focus on something. This is never helpful, but especially not when you are trying to relax.
How to stand, sit, or lie down feeling grounded:
Start with your face. First release your jaw. Let it go slack. Your upper and bottom teeth should not be touching. Now allow your face to go slack. If you've ever had Novocaine and not been able to feel parts of your face, try to imagine that feeling.
When standing or sitting:
Release your shoulders. That doesn't mean push them down. If you feel that you are doing any work to do this raise your arms to the ceiling and then let them swing down. When your arms fall you'll have a moment where your shoulders feel supported by by your skeleton alone. That's the sweet spot. You can also try raising and lowering your shoulders to feel it. This may take practice. It took having a teacher watch me and call me on pressing my shoulders down to make them look relaxed.
Your posture at this point won't feel elegant or proud. Instead it should feel like something has eased. You are letting gravity pull on you and relying on your skeleton to hold you up.
Seated, standing or sitting:
Imagine the your body's weight being taken up more and more each moment by the chair or the floor.
Now release your belly. Don't jut it out, but if you've tucked it under or sucked it in, let it go. This may feel really strange. Most of the readers this will reach have been taught to hide and hate their bellies. You might not realize you've internalized this, but try to enjoy the feeling of letting your belly swell and contract as you are breathing. Place your hands on your belly and feel the movement.
This movement happens because your diaphragm pushes your organs out of the way so your lungs can expand down. Every breath you take requires a rearrangement of your squishy parts. That's pretty amazing. So allowing your belly to swell when you breathe is important. It allows your lungs to fill up.
If you had any negative thoughts about your belly during this exercise, try to take some time to marvel at what's happening beneath it. Learning to stop hating your body actually really helps you relax it, more on that below.
If you are standing give your knees a gentle bend. Now focus on any place you are feeling ease. Maybe most of your body hurts and it's just in your face, or your shoulders, or your belly. Maybe it's the tip of your finger resting on your belly. Focus on that sense of ease. Bring to mind other times you have felt ease if you can.
Check in with your face, your shoulders, your belly. Anything that is resting on another surface, imagine it's melting into the surface. The bed, the floor, the chair, allow them to take up your weight.
Just ride the breath, and try not to get discouraged if the breath feels ragged, or too fast. Ride it with a sense of ease.
Advanced Relaxation - Physiological Quieting
What I like about this technique is that it works for some who can't relax your muscles on command. Now I'm not promising 100% relaxation, everyone's body is different, but I find this works for me better than Progressive Relaxation.
You'll want to do this lying down with your knees, lower back and neck supported if that helps you feel comfortable. I recommend doing it in a bed or recliner.
You can start from your head or your toes, feel free to mix it up. Systematically bring to mind muscle groups in your body, your feet, your lower leg, and so on. As you do, repeat in your mind, "My foot is warm, my foot is heavy, my foot is very relaxed." I'd recommend saying this at least 3 times but feel free to say it more often if you aren't feeling that muscle group relax.
Parasympathetic 2 to 1 breathing
If you are dealing with general anxiousness and the exercise of riding the breath is just frustrating, there is a more specific breathing exercise that can help. Your body breathes quickly when you are anxious, it's the fight or flight response. What's interesting is that breathing can signal the brain to continue that response or stop it (again you might not find this is enough to handle all anxious feelings - I'm no doctor just a patient who has had some good luck with these techniques).
What you want to do is count while you inhale and then double that count when you exhale. Exhale and inhale as evenly as possible. Exhaling for twice as long as you inhale signals to your brain that you aren't in danger. You are safe enough that you are breathing deeply. That can help the feelings of anxiousness to disappear.
Body Appreciation
I've found that when I relax I get better benefit if I work on appreciating my body. This took a decade to learn so I don't know if it will work for you. Many of us don't like this or that part of us. Maybe it's body image issues. Maybe it's hating how your gut keeps you from going places, or how your hip aches so much it's hard to move. We tend to look to find a place to focus our frustration for how we feel. That's normal. But I find for me it gets in the way of true relaxation. My belly is where I tend to focus my dislike. It's too big, it houses my gut which is problematic, so I don't like it.
I realized I had to let go of that when I did Voice Movement Therapy work. My belly also is part of the movement of the breath, and I needed to feel comfortable with letting it be free and obvious when I sang. That took a lot of mental work. But doing that work meant that I was able work on singing and relaxation without simultaneously hating a part of myself.
There are two main ways I work on appreciating the body. I sometimes go through each part and try to think of the beneficial and effortless actions that part does, in spite of whatever issues I have with it. Maybe if my ankle is being problematic, I'll think of how blood is still flowing through it without effort. Or I'll consider that even when my asthma is unpleasant (mine isn't severe), I'm still managing to breathe without conscious decision.
The approach above might be too hard on certain days, or if you suffer from certain problems. So I do have another I use. This can be either the first step of conscious relaxation or something you do afterwards. Bring to mind a person (children with great for this) or animal that you feel (non-sexual) affection for. Take that feeling of affection and try to apply it to your body. The imagery I use is imagining that I'm painting my body with the affection. As each part of me is painted it is bathed in a warm golden light.
Resources
Physiological Quieting tracks are available online. Sometimes it's helpful to listen to someone guide you. This was the first thing I was asked to do in a pain clinic and it really worked. I'd link to my favorites but my favorite isn't available publically. But here's a shout out to Eve Kennedy who taught me this approach.
Vidyamala Burch is an excellent teacher who suffers from a lot of body problems and is a wheelchair user. I learned a lot (more than I expected) from her book Living Well With Pain and Illness. She has some online meditation courses though Insight Timer (an app) and though Breathworks, a company she founded. Many of her courses are on dealing with pain and illness. If you see lucky you might find an in person course in your area. You can also buy meditation tracks from her online. She is a Buddhist, but while her approach includes some inspiration from Buddhism, it is secular. She's a marvelous teacher.
Vidyamala Burch
Bodhipakṣa is working on a book on self-compassion and teaches online courses on the subject. His work on compassion involves the body and he's an excellent teacher.
Download peace MP3 Guided Meditations from Wildmind We offer a large range of guided meditations in both MP3 and CD format on our online sto
Finally I'd like to recommend my friend and Mali Sastri. If you want to work with movement and Voice she's an amazing resource. You can read about how our work affected my health here:
"When I started doing it, I wasn’t looking to improve my health..."
Fibromyalgia might be the cause of my sensory overload avoidance.
Fibro isn't well understood, so sometimes reading about other's experiences is really let to understanding your own symptoms. Someone wrote a list including sensory overload. Yes. That's me these days. I avoid stores, parties, etc more and more often because they are too noisy and too busy.
I never used to shy away from loud activities or places with lots of stuff. I used to love those things and being around lots of people. Now all those situations has me often opting out. That's weird for someone who used to be very outgoing and up for anything...
I kept wondering if this was late on set - something. But it makes sense, my fibro appeared about 10 years ago and has been getting different over time.
My Buddhist friends think it's partially a deepening of my practice and yes it probably is. I've realized I get a lot more out of calm conversations and situations where I can focus on what's in front of me.
Heck this might also be where my recent dislike of decision fatigue comes from.
Reading sensory overload on the list of symptoms made me feel seen. It made me feel like there is less of a need to look into these things. And that's a good feeling.
Desperately Seeking a Diagnosis - But I'll settle for a treatment plan
I was sitting with the doctor, waiting to hear my test results. I was hoping that the tests would tell us what was wrong. "The tests came back negative, I'm sorry, I know this must be hard on you."
I was devastated, but glad the doctor understood. It was a good thing that the tests were negative, but every negative result meant we were making no progress on getting a diagnosis. I didn't have Crohn's, Colitis, or any other disease we could find that explained my symptoms. I ended up with a diagnosis based on exclusion (when your symptoms are lumped into a condition, because they don't see any other reason for them).
Like Rachel Bloom's character in this song, I wanted a word to describe what was going on with me. I wanted what a diagnosis gives you - a prognosis, a treatment plan, reassurances the my symptoms existed, and an identity. A diagnosis is an explanation of what's going on, a word you can use to explain your experience.
Rachel Bloom's Diagnosis song
But sometimes there isn't a diagnosis. Sometimes you get a diagnosis of exclusion, or nothing at all to call what is happening. When that happens you need someone who has an interest in helping you live with the symptoms.
I've learned that some doctors really don't have much interest or skill in that area. Once my doctor knew that I didn't have any major gut illnesses, she couldn't help me. The second pain clinic I visited turns out to mostly focus on cancer patients and palliative care, and they didn't have much to suggest either. So I had to find new doctors, new clinics. I asked around, I did research and found the right fit.
I have a lot of diagnoses - some are straightforward, the treatment plan is clear. Others are systemic and the interplay between them is hard to untangle. My hypermobility can trigger my myofascial pain syndrome, which can trigger my fibro. And then it takes a long time to get everything calm. Because the treatment isn't straightforward. It's not one thing that's wrong. But the treatment plan is slowly working.
When you look for help, understanding and a diagnosis, you should absolutely advocate for yourself and make sure people take you seriously. Ask for tests if you suspect something specific. But be prepared for a day when you might need to accept a treatment plan, even if you don't have a diagnosis.
I've had at least four bouts of issues with pain. This time has been the hardest. My pain hasn't been responding as well as it used to pain medication, so it's been hard to make headway even though we think we know what the next steps should be. As soon as the pain is more tolerable (for me that threshold is less pain from sitting up), I'll be going to physical therapy which should help eliminate the source of my pain.
My pain therapist thinks my body is overstimulated from a nervous system perspective. So far the drugs she's suggested are helping. The other treatment I'm doing is a twice daily meditation that is designed to quiet the autonomic nervous system in the body. I meet with a pain psychologist once a month to meditate in his office and then look at the data collected by a sensor he has connected to my finger. This allows us to see how my meditation affected my heart rate, skin conductivity (sweatiness) and skin temperature. Based on the data, I'm pretty good at this. But what happens when I'm not meditating? Well that is what I'm worried about these days.
I work a high stress job. It's only 40 hours a week but they are intense hours. I love my problem solving job, but my body doesn't know the stress is 'good’ stress. The stress hormones are the same and they rev up the same autonomic nervous system I'm trying to quiet.
Changing my job, or taking a sabbatical, isn't going to work right now. I might be able to take some time off in a couple of months. Instead I'm reevaluating how can I slow my body down even while at work. I'm going to try 3-5 minute meditation breaks. I'm going to try to time how long I'm allowed to obsessively try to solve the same problem before I need to take a break. I'll try to make sure I don't give in to obsessively organizing binges when I'm at home and I'll probably add acupuncture since I know that helps.
The hardest thing I need to do is not push myself physically. I've been told to avoid pain flare-ups from doing too much. That isn't easy, since I often can't feel that something is too much until it's way too late. So I'll be timing my physical activities using playlists and trying to be mindful.
I know these actions will help, but I find this very hard. I prefer it when I have physical therapy exercises to do, it makes me feel like I'm making headway. But I know that these skills should help my health overall. I'm learning to leave the fast lane, and hoping that slow and steady will win this race.
Disabilities come in so many varieties. As someone who is invisibly and intermittently disabled I know this very well. Some days I question if I should even use the word disabled. I can move my body in any way I want. Shouldn't that disqualify me?
On the other hand I have firm instructions from my doctor not to let my pain flare up. And I'm someone who gets flare-ups from walking, standing, and sitting. So that does limit my life. I can't even begin to consider taking public transit. How can I convince people to give up their seats? I look healthy. And I'm probably going to be better in six months. I make a good living, I'm being accommodated without needing federal laws to protect me, and I'm grateful. Because the laws in the US aren't very helpful for people with chronic illness or pain.
What about people who need wheelchairs for bad days but can walk on good ones? How disabled are they? That's the question the government is asking right now. And it's very damaging to people who need disability benefits and services.
We have a story in the Western world that there are many people taking advantage of the system (whichever one there is) who don't need it. There has been a careful campaign of reducing funds and services for the disabled in many countries. I know it's been a disaster for disabled people in the UK. And now the Trump Administration wants to monitor disabled people's social media to see if they really need their benefits.
This Forbes article explains the impact much better than I can, I highly recommend reading it.
I'm scared for people who need the systems. I'm scared for myself in the future - I've had to invoke the ADA once and I left a job over it.
The world needs to learn about people with disabilities of all kinds. It needs stories that involve disabled characters without focusing on their disabilities. People need to stop seeing disabled people as those who are worthy of veneration for having difficulties (inspirationporn) and those who aren't disabled enough to need help. People with invisible disabilities need a voice and representation too. People need to see disabled people living out loud and enjoying life, and this proposed policy is going to shut that down.
Our disabilities don't define us, but that doesn't mean they aren't an important part of our identity. I'm living a mostly happy and productive life because I'm being accommodated. My friends visit me at home. My job lets me work from a recliner. I can afford to take Lyfts everywhere. We eat a lot of delivery, and I order a lot of things online. Without those accommodations my life would be harder. And in the scheme of disabilities I'm relatively well. I'm eager for representation. There aren't stories in TV or movies or books (that I know about) about people like me, yet. I'm eagerly awaiting Get a Life Chloe Brown, one of the first books I've ever heard of that would fit the bill.
I'm not here to inspire or shame healthy people, writing about with my full life despite my chronic illnesses. I'm writing because I'm hoping to show that people like me can be happy. I'm hoping what I share can help others. I'm hoping that my story brings understanding for allies, and a feeling of being heard for other people suffering from invisible illnesses.
I think many people in my life have no idea where my days are like. They are far less limited but my pain than they think. I also think it might be helpful to write down how my health does affect my days. I think my life is pretty great, and I hope this post shows why.
I wake up naturally at 5:30 am. I take my thyroid pills and opiate. The thyroid pills have to be taken 30 minutes before eating and 60 minutes before other pills except calcium which has to wait 4 hours.
I go back to sleep. At 6:30 my partner gets up and I eat breakfast, granola. Then I read, made some tea, take am5 more pills (muscle relaxant, Orilissa, add back progesterone, blood pressure medication, nerve medication) and had many bathroom breaks.
My constipation dominant IBS has a weird effect on my life. For about 2 hours after waking I have bathroom needs relatively frequently and I need to stay home during that timeframe.
At around 8:30 I shower and in alternating days wash my hair which needs more up time because I have to dry it. Luckily my hair is short. Then it's 15 minutes for makeup, my morning indulgence. I grab my daily pair of patterned pants, solid top, and headband. Then jewelry.
I snap my badge into my waist band, grab my microwave meal and banana for lunch and wait for my Lyft. On a busy day I sometimes do work during my tea time or even take calls while putting on makeup or on my way to work. Sometimes I chat with my Lyft driver, I like to do that, but I've started meditating on the ride so I can get that time in. That's crucial to my health plan right now because the meditation calms my central nervous system. Also often my blog posts are written in a Lyft.
Between 10 and 10:30 I walk from my Lyft drop off point to my office, which is about 5 minutes. I walk in, greet my team members and get started with my work day.
I'm a team lead for one project software development project. I manage the team, I plan our work, and I am the expert in what we do. I have 3 employees, and 2 on loan from another department. Despite being technically on this project only 50 percent of the time, 100 percent of the time I'm on call for this work. I dole out assignments, I help people get unstuck, I make decisions on how to proceed with the technical work. And I also do some of the technical work. The code is in C#, with Telerik testing framework as our automation tool. It's a pretty big piece of software and growing daily. It's also very object oriented and modular.
For the other team I'm currently the only person doing automation but that will change in time. That project is JavaScript with Selenium.
I spend my day as much in my recliner desk as possible while switching back and forth between the two projects, with different technologies. I answer questions and often hold meetings from my chair. I take my midday muscle relaxant and nerve medication dose. Also some supplements for my IBS. And chocolate which I share with my team.
I have a lot of very busy people to hunt down for answers, decisions or to give updates nearly daily. Phoning would work better for me but phoning requires them to be at their desks. So for those I walk around to find them, stand and hover until they talk to me, or take a seat in their offices. This isn't great for my pain, but my body needs the movement anyway, and this part of my day is getting easier.
Most of my day is juggling responsibilities and solving problems. It's often very chaotic. There are lists of things I've written down and mental lists of things to try and work on. I try to delegate as much as I can, but a lot can't be delegated without more training and I don't have a lot of time to train people more.
I've been trying to come up with an analogy for what my work is like for people who don't program. It's like working on a big research paper in German with lots of contributors and writing an epic poem in English at the same time. I have to switch languages and contexts all day, which is extremely taxing. I have to figure out rhyme schemes and copy edit other people's writing. The calculations for the research aren't coming out right and the printer needs an error cleared only I know how to fix.
It's like working in two kitchens side by side. In one there is a team of chef's preparing an elaborate feast. In the other I'm working on a dessert on my own with hand made puff pastry and an incorporated souffle. The ovens are finicky but I know how to calibrate them. The feast work is underway when we discover there are no ramekins. The event planner asks if we can add 5 more place settings. Someone slammed the door in the other kitchen and my souffle has fallen. I left out the quantities for key ingredients for the recipe for the feast so I have to go back and help. The event planner says we might need to add more people to the guest list, one of my chef's is needed in another kitchen, and when will the first course be ready. In my own kitchen someone borrowed the kitchen aid. Due to allergies of guests I didn't know were coming I need to change the delicate dessert on the fly. When is the desert going to be finished? When can the event planner come in for a taste test? Another chef has to go home because her child is sick. Can I interview another chef who might help in 4 weeks time?
I know this sounds like a nightmare but I love it. I need quiet days too, to do maintenance on the tools we use, to try out new techniques. I have those days once every two weeks or so. I love solving problems and training people. I love software. I love getting to make most of the bit decisions. Every day could be crazy, but I do well in chaos. Like a triage nurse I'm able to focus on what needs to happen first, what can wait until later, and I can make sense of the problems at hand.
I go home in a Lyft usually while talking about my day with my parents. Since my day usually involves a lot of problem solving it's easy to forget that from the outside this doesn't look fun. Sometimes my daily update is just a list of the unsolved problems and they might not realize how much I love it.
When I get home I tell a similarly stressful account of the triumphs and unsolved problems of my day to my spouse who mostly pays attention and tells me about his day. We mostly eat delivery, I manage to cook at most once every two weeks.. The standing while cooking is too much.
I might put my laundry away or do some dishes. While my partner works on hobbies and I catch up on news and social media on my phone we watch TV. Then most nights we spend some time snuggling in front of the TV.
He goes to bed early. Sometimes I watch TV then, or read, or meditate. Then more pills, an antihistamine and an antileukotriene for my asthma, another Orilissa, more nerve medication and two muscle relaxants, then bed.
Throughout the day I might be singing or accidentally dancing… that happens a lot.
On the weekends the mornings are pretty much the same but i often sleep in. Friends might come over and my Buddhist friends come over for study twice a month. I might do a Skype meal with my parents, or Skype with someone else. I've started going back to voice movement therapy which helps me be creative and connect with my body. The singing is an amazing outlet for me.
I think other than the pills and some accommodations I need, like the recliner chair, my life is pretty normal. I have connections with friends and family, hobbies and I read and watch TV a lot. My health issues are frustrating, and I'm hoping to be less restricted in the future, but my life is mostly beautiful and satisfying.
I'm a chronically untidy person. I have great hopes every time the seasons change and I organize my whole world, But my vows are quickly abandoned. I know why. I own too much and all of it brings me too much joy to purge (take that Marie Kondo), I buy things a lot and they don't find permanent storage homes, and when I get home or laundry is done, I often don't have the spoons to put things away.
My parents had a friend, Gertie, when I was growing up who used to say “I'm too lazy to not put things away." That saying mystified me. Not putting things away is lazy! Any 6 year old knows that.
Now I know the wisdom in her words. Gertie never had to look for anything, she knew where everything was. She needed a walker to get around and searching for things was much too much for her state of health. I hear her words every time I'm looking through a pile of treasures to find the thing I'm looking for. Because I don't want to spend my precious up and standing time on finding things.
I fall back on three things when times are as rough as they are right now: I create a uniform to wear, I attach Tile locators to things I really need to find, and I try to let not finding things go.
(This post will not have any links to products. It's more about strategy, I'll do another favorite things post with links for clothes). I u
My current uniform is a pair of comfy pants that evoke the 70s, and a plain t-shirt (sometimes with sparkles), and one of many black jacket/sweater options). I have my Tiles attached to keys, tablets, my work ID, and my car. I put bright coasters places I'm likely to put my phone so I can spot the black contrast against the color. And I still misplace things, but I'm working on it. My mom recommends taking a picture of any clever place you find to put things, so that you remember it when you need to find them.
Spoon hacks are often life hacks. The road to feeling better is often paved with making tiny changes to habits. So if you, like me can't afford the spoons to look for things, consider the lazy way out - spend the 5 seconds after you get home to put things away and you'll save yourself a lot of time (and pain) since you don't have to look for them.
Constipation, diarrhea, gas shouldn't be taboo when you talk to your doctor.
Every night I see drug commercials where they list so many possible side effects that you wonder why anyone would take the medication. I'm sure that many people snicker when they hear constipation, diarrhea, gas and bloating as side effects - but if you experience these side effects you need to take them seriously and talk them over with your doctor.
In fact you should talk to your doctor if you have these experiences, even if you aren't on any medications.
Constipation can be a big source of pain, it can lead to other medical issues, and it could be caused by an underlying condition that's important to address. Constipation caused by medications, especially opiates, is called Painstipation and is a real issue that your doctor needs to know about. Laxatives can become something your body relies on (even your morning cup of coffee), so it's important to make sure your doctor knows if you are using them. I know how hard it can be to talk about this. It took me months of escalating problems to talk about this to my doctor, but I did. I found out I had nothing scary to worry about and got help.
Diarrhea leads to dehydration, and in addition to making you miserable, it can be an important clue in diagnosis. You could keep popping Imodium, but if this is a symptom of a serious medical condition, you want to make sure your doctor knows.
I now know why some people mistake gas for a heart attack. It can be really painful, and in unexpected places. You might feel silly talking about it, but your doctor needs to know if this is a part of your suffering.
Don't let shame or embarrassment keep you from talking about these symptoms. Let your doctor know, make sure they aren't an indication of a bigger problem, and get the help you need to feel better.
Orilissa - not as new as they want to you to think
I'm on Orilissa now, and it's awesome. I get my menopause in two pills a day instead of once every month or three. Being in menopause prevents my endo from growing and helps make the pain tolerable.
I'm writing this not to denigrate Orilissa but to let people with endo know that there are lots of people with experience with this sort of medication even though it's new.
Orilissa ads are everywhere, but there is one thing they forget to mention. They aren't the first drug that works this way, it's just the first time this medication was made into a pill. Depot-Lupron (another Abbvie product) and Synarel have been around for a long time.
Don't get me wrong, I'm glad to have Orilissa. It's awesome that this is now an accepted way of treating endometriosis. For decades I had friends, family and doctors question if being in menopause so long was safe, now Abbvie which makes Orilissa has gotten the FDA to say yes. I also think that a daily dose will decrease my monthly cramps which happened with every injection.
So if you are taking or interested in Orilissa, consider looking into people's stories about Depot-Lupron or Synarel. The experience won't be exactly the same because the delivery method is different, the dosages may be different, and all of us have different bodies - but you'll find information normally hard to get on such a new drug.
