It’s Tuesday which means aqua zumba. I did pretty well with it last week. So well it sort of knocked me on my butt. That’s actually good news. As I get more energetic with the walking and losing weight, it’s going to be easier to go too far. I’m pushing myself a little too far at times already, so I have to be a bit careful about how much I do. One of the most frustrating things about fibro is the mindfulness aspect. It’s a vicious circle. You can’t just do what you want to do – you have to be mindful so you don’t overdo it. But when you think about how much you hurt or pay too much attention to your physicality in general, it emphasizes the pain, and you hurt more, so you have to be mindful…about being mindful. It’s always in the back of your mind. Like a mosquito in a tent overnight on a camping trip buzzing in your ear just as soon as you get comfortable. Get up and move, but not too fast, keep in mind not to overdo, but don’t think too much about it. It’s easy for people who have not dealt with the conundrum of fibromyalgia to not understand the psychological aspects of fibro, the constant stress, knowing, even when you feel well, that you have to plan for the pain, but if you plan too much, then you don’t move enough. I’m old, so I grew up watching Kathy Rigby at the Olympics, doing one of the first backflips on a balance beam. It seemed miraculous and a little impossible. That’s really what we do everyday, the impossible. We do everything we can to stay on the balance beam.

This blog site started because of the question: “Why did extreme exercise in the form of Bootcamp significantly reduce my fibromyalgia symptoms – what was it about that type of exercise (moving until you can’t move anymore) that fought fibro?” My theory was the release of chemicals/hormones that were in short supply or needed a boost in fibro patients. That’s still a possibility. Another is that the extreme cardio portion of the exercises allowed the body to pump oxygen more efficiently throughout the whole body, including to muscles and joints, etc. There are really quite a few possibilities, but none of them really got to the core of what causes fibro anyway? Since there is no definitive answer to that question (despite lots of theories), there is no real definitive answer to how to “cure” it or “relieve” it or why extreme exercise alleviates it.

Unfortunately, when bootcamp became more about lifting weights and the cardio component was cut back, my back and joints did not handle it. I switched to yoga, and found tremendous relief, particularly in my hips. And then I learned to swim properly and started swimming laps. While swimming is my favorite exercise, it is conversely the least effective. I walk away in pain and wake up in pain with lots of swelling, and the cardio workout I experience in the pool doesn’t actually build my cardio endurance like the extreme cardio exercises at bootcamp. I’ve now switched to doing Aqua Zumba once a week and try to swim/run in the pool on my own once a week. It’s fun, it feels good, but I’ve gained weight hand over fist over during this time, my cardio fitness is quite low, and my pain levels are through the roof. But I enjoy it, so I’m going to continue it.

I have to supplement it, however, in a quest to reduce both weight and pain. I am associating pain with my weight gain, particularly joint and back pain. It’s becoming very easy to say, well of course you hurt, you’re twice the weight you should be. Also, there are new treatments for sleep apnea which I don’t qualify for because of my weight, and I want to get relief from the apnea. So weight loss it is. I’m dealing with food issues in the Captain’s Log page and finding success with eating better by becoming more mindful about what I’m eating and “talking” about it – the Captain’s Log is like my food therapist. I’m also walking 10,000 steps a day. At first it seemed impossible, but just by changing a few habits I have been able to supplement what I was doing normally at work (a very large facility where you can’t help but walk) and get to my goal every workday. I don’t track steps on the weekend.

So I’m walking. A lot. Bottom line, it’s helping my cardio, which according to my theory will reduce pain, but it hurts. A lot. It hurts everything. Fibro flu is rampant. I’m exhausted, my brain is slow, and my mood is iffy. However, when I started yoga, I had a lot of the same types of reactions until several weeks in, and then one day, it was like someone turned on a light, and there was relief. I’m going to continue this, pain or no, until I finish up a “Greatest Loser” contest at work (ends in May, I think), and then see how I feel. That gives me a deadline to work toward and some goals.

I know I’m one of the very lucky ones to be able to even try different forms of exercise, and I’m always grateful, even when it seems like a very silly thing to do, to keep pushing on. It would be very interesting to hear what effects exercise has had on other people with fibro. Please feel free to comment!

Without realizing it, when I bought my FitBit, I seem to have embarked on another phase in understanding the effect of exercise on fibromyalgia symptoms. Nope, after a few days of tracking my steps and my activities and food intake and calories burned, I have not solved my fibro pain. However, I do feel a difference, and I certainly don’t feel worse. I’ve attached below a screen shot of what the app looks like on my phone. Below this screen shot are calorie and water intakes and weight tracking, and lots of other stuff. It’s easy to use and it reminds me of a videogame, so I’m like one of the Mario Bros zipping around to see how well I can do. I think that’s probably a good thing.

Today, I really didn’t think I’d hit the 10,000 step goal. I went to the store and parked the farthest distance I could to be able to add more steps. I used the farthest elevator at work. There’s a reminder on the FitBit when I haven’t taken my 250 steps in an hour – because I get caught up working – so this guy is waving at me saying, don’t I want to move a little? All that helps to simply get up and move, even when I don’t want to. I start walking and when I want to stop, I can’t – even though my back and legs and hips are hurting – because I have to make it back to my desk to finish out the day.

Having this thing on my wrist makes me mindful of how much I actually am moving. And I’m discovering that I’m not moving as much as I feel like I’m moving. Plus I’m discovering that I can move more than I think I can. It’s a little like getting back into bootcamp. The more I go, the faster I go, the more I push my cardiovascular system, the better I am. Tonight I can make a fist with my right hand – something I haven’t been able to do because of the amount of swelling I’ve had. My knees are more defined – I can almost see my kneecaps, again because of a good reduction in swelling. Unfortunately my feet and ankles aren’t faring as well. My ankles are decidedly swollen and my feet are quite sore, which is probably why I was having such trouble getting up and about today.

So I’m going to keep doing this for a while and see what happens. I need to lose a lot of weight, and tracking my food intake is, again, making me mindful of how well or how badly I’m really doing with eating, both what I eat and how much. Losing weight will definitely help with the joint and muscle pain I’ve been having. I’m tracking my progress in the Captain’s Log page, if you want to peek in. My first weigh-in for a Greatest Loser contest at work is on Monday – I’m giving this until the contest is over, at least. I’m still searching for sustainability, but maybe I need to look for accountability instead.

Welcome to the conversation – happy to have you!

I haven’t been writing like I should be. I haven’t been researching, reading through articles, and sharing the bits that I’ve learned like I should be. I really do have a mission with this blog, and I’m not abandoning it. The fact is, I’m sicker than I’ve ever been. I’m in more pain than ever. I’ve gained 20 pounds (that I really didn’t need) over the last year. Everything I eat fights back at me in some way – food friends turn into food enemies eventually. There is little, if anything, at this point that is relieving pain, even rest. I hurt walking, sitting, laying down; standing in one place is near on impossible. The fatigue is overwhelming.

But I’m happy. For the first time in my life my personal and professional lives have come together – both are making me happy. However, with happiness comes non-productivity. At work, it’s all good. I’m paid to sit there and work, and I enjoy my job. But my projects, the projects that I’ve always had to keep my head out of my joints and muscles, my projects are languishing. They are a key element to my mental health, and I have to get back on them. This blog isn’t the only project – I’ve been nibbling at a very intriguing mystery too, and those characters are waiting, none too patiently, in the back of my mind.

One of the ways that I’ve cured writer’s block in the past has been journaling. Unfortunately, my fingers are too stiff to be able to write in a way that I’ll ever be able to know what I’ve written. And writing hurts, plain and simple. Holding a pen hurts, and at best I can just make notes and lists. Traditional journaling is out.

Another way of curing writer’s block is exercise. Those endorphins and the oxygen flow gets your brain clicking. Unfortunately, I’ve been using my lunch hours to try, unsuccessfully to write, going home after work and laying down is much more feasible than moving, and exercise has been lagging.

I’m going to try a combination of getting both my body and my brain moving. I’ve bought a FitBit (or as a friend and I call it, a Not-A-Bit-Fit), and I’m going to use the Captain’s Log to journal. I have a goal. First of all, I need to track how much I’m moving and try to stay within my goals. Second,  I need to track what I’m eating, how much, and when. I’ve noticed with this weight gain that habits have changed, and I’m struggling with my relationship with food (which has never been good). The third goal is to get some discipline back in my writing.

I’m not going to post the journal entries, but if you’re interested in following you can look at the Captain’s Log page on this blog. Starting tonight. I know that sounds like procrastination, but I have to go to work! Yep, life gets in the way, and happiness, lovely happiness, comes with a price.

I’m not going to argue the opioid crisis. I would never tell someone suffering from chronic pain that they shouldn’t take so and such anything that may help them, physiologically or psychologically. Everyone has to make that choice, preferably with the help of a competent doctor who has done the research to know what will actually touch the constant fibro pain – if anything. I’ve made the choice to give up on pain meds. I’ve made the decision that my brain functions better under the stress of constant pain than it does under the numbing influence of opioids and that a clear brain is necessary for the quality of life I choose. My choice. 

A few days ago I was distressed to see that articles are circulating about “pain acceptance,” that doctors are advocating “pain acceptance.” I’m not sure what “pain acceptance” is supposed to be. I come as close as possible to “accepting” my chronic pain as I can, simply by making choices to move when I hurt and to stay away from drugs, but I don’t accept my pain.

The biggest problem with advocating for “pain acceptance” is that it opens the way to missing diagnoses for things that can be cured or alleviated. I’ve told the story before about my massive pulmonary embolism, walking into a doctor’s office saying I think I have a pulmonary embolism, explaining the shortness of breath, the stabbing pains in my side, having the doctor look at “fibromyalgia” in my medical record (next to a blood clot diagnosis) and saying, “I see you have fibromyalgia.” He sent me home. Three days later I woke up on the bathroom floor in the midst of a “near fatal episode.”

There can be no pain acceptance without due diligence, and if doctors are really pushing patients off pain meds and telling them they need to “accept” their pain, they need to be prepared to listen to patients when they have new symptoms and make sure that the patient is still “healthy” even if in pain.

I have an understanding with my doctors – I don’t see them a lot, I don’t contact them, unless it’s something new. Usually I only see him (or her, I have residents for my doctor and they switch out every three years) once a year for my yearly, and at that time, I’ll choose what I’m concerned about. Right now I’m working on unusual, ongoing abdominal pains. He’s putting me through tests for celiac, ulcer, etc, and has not ruled out an endoscopy to make sure there isn’t cancer because there is cancer that runs in my family. It’s a balancing act for us, and I think it helps that I’ve refused meds that I can’t take anyway. There is no doubt in the doctor’s mind why I’m there and what I want, and I reiterate my purpose in talking to him all the time: I know any testing is probably going to come back negative, but I need to do my due diligence. Doctors understand that. Some are better than others in following up and ordering tests that would allow me to do that due diligence, but they understand and accept that concept. That’s “pain acceptance” with due diligence.

Where I see more of a push for “pain acceptance” is from society as a whole. People with chronic pain are the source of the opioid crisis, no? No, but I’m not going there. A friend of mine recently started having knee trouble. He, a person who has never made me feel uncomfortable about fibro, said that he was understanding better what chronic pain is like and that he sort of dismissed it before. I would never wish chronic pain on anyone (although sometimes I think doctors should have a chronic disorder before they can become doctors), but it’s really the only way people can fully understand. I look normal, I act normal, people tell me all the time they can’t tell that I’m in pain. I’m glad of that, but it means they don’t always understand when I do need that time to rejuvenate, even the people I’m closest to.

So maybe for awhile lawmakers and the healthy people who look sideways at those of us who have to think about every movement we make, maybe they should just duct tape a Lego piece to the bottom of their feet and tell them they have to do everything everyone else can do. Oh, you can take some ibuprofen – oh wait, that gave you a bit of an ulcer, try naproxen or Tylenol. What do you mean Tylenol doesn’t make a difference? Just take more. Just get used to it…

A typical description of fibromyalgia: Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep impairment, and cognitive dysfunction. What this description doesn’t do, however, is explain that all of these characteristics of fibro can really be boiled down to hypersensitivity. Right now I’m sitting in Caribou Coffee (for those of you not from Minnesota, it’s a great coffee shop, filled with luscious smells and students studying, like Starbucks but not). The sound of the coffee bean grinder and the lathering machine thingy sound like they’re hitting me on the side of my head. There’s a Christmas “carol” playing on the overhead speaker – sounds like someone is beating a cat – I think it’s Mariah Carey having a conniption (sorry to any Mariah Carey fans out there), There are people talking quietly but occasionally breaking out it laughter. The laughter pierces my right eardrum. The mild dullness of hearing in my left ear helps that side. The carpeting on the floor is an abstract rendering of tree limbs. Mixed with another section of hardwood floors, a brick fireplace, and walls painted all different colors (nice colors, just lots of them), the surroundings make me feel a little off-balance. The lighting, however, is dim, except what hits off my little laptop and bounces back to hit between my eyes. I had to move to keep out of the sun streaming in the window. Beep beep beep behind the counter, people wandering in and out, constant motion, constant noise, constant sensation. Add to that the “usual” sensations: lower and mid back pain, aching ankles and hands, neck and shoulders, arms and legs, all the usual stuff including eyes that won’t properly focus. This is one of my favorite places, Caribou Coffee. I love the atmosphere, the kids studying, the forbidden peppermint hot dark chocolate.

It’s a good place to think and settle in to writing a little bit. I plug Pandora into my ears, breathe in the caffeine smells, savor the hot chocolate (yep, I’ll feel that later) and settle in. I want to be here, so I’m here. It hurts, it’s exhausting, I’ll need to hibernate when I get home with peace and quiet and calm environment (if my puppy allows it). I want to be here, so I’m here, but I’ll only be here an hour or so, and then I can retreat.

At work, it’s much the same, except I am there nine hours total. The environment is completely different from the Caribou Coffee environment, but the effects are all the same. The lunch hour doesn’t really give me the hibernation that I usually need by midday. Venturing out of my office for lunch and making my way through crowds and noise to find food is completely overwhelming and anxiety-provoking. By the end of the day, I’m shattered. Work is one of my favorite places, the people are some of my favorite people. I want to be there, so I’m there, everyday. It would break my heart if I couldn’t make it to work.

Other “normal” people don’t hear, see, or feel the same way in these environments. They don’t realize their laughter is causing actual physical pain or that talking incessantly is causing someone anxiety. People at work don’t realize not everyone can concentrate with glaring fluorescent lights. They don’t understand that our bodies are under siege, that we feel and react more to smaller stimuli. Doctors have documented that difference, and they don’t understand how we feel more with less either. We do, though, so may as well settle in and go the places we want to go, do the things we want to do, and hibernate when we need to. I don’t expect people to understand, and honestly, I prefer they don’t try. Just let me do what I need to do….

Thanks for taking a look with us! Vielen Dank!

When I first was diagnosed with major depression, one of the things I did to combat the vortex that was constantly trying to pull me down was to pause and consciously remember everything I have to be grateful for. Everyday needed to be something different. It helped. It changed my focus from everything that was hurting me mentally, and onto the things that really mattered, whether it was a beautiful sunrise or a person who made a difference in my life when I was eight years old. I started to heal by counting my blessings. It sounds so trite… but it helped.

The same things works for the physical, but it’s hard. I have so much to be grateful for, but it gets obscured because of the constant struggle. Working at a health care facility constantly puts me in the position to remember how much I have grateful for. I see couples, one pushing the other in a wheelchair, one holding onto the arm of the other. I see the love between them, the patience, the hope, and despair. I see tears and smiles, smiles through tears. I see people in chemo with scarves covering their heads, whose legs don’t walk straight, who lean against walkers, who drag themselves forward despite unwilling bodies.

It’s so easy to turn all my thoughts inward to how I feel, how tired I am, how much I hurt, to wallow in my own selfishness. Yes, I need to be self-aware, to take care of myself, to be mindful of my Self. But I can’t forget that I’m alive, upright, functioning. I have years ahead of me. There’s always someone suffering more than I am. I would rather expend my emotional energy to love and cherish them, not myself.

The one sure-fire way I know I’m not only doing something wrong but have been for way too long is when sleep, that haven from reality, turns on me. When my legs and hips hurt too much for too long, I have dreams that I can’t walk. One night I spent several hours trying to climb a flight of stairs. Every step I took, I sunk down to the ground and had to pull myself back up again. I never made it to the top of the stairs and woke up unable to move my legs without my hips popping. Needless to say, I didn’t have a terribly productive day after that one.

One night was spent trying to catch up with friends and family who were just out of reach and having a great time. I was left behind trying to stand up straight.

And then there are the opposite effects of pain in my legs and hips. There are nights when I run and run and run. I don’t want to stop running. I’m not running from something – I’m running because I can. Because my joints feel smooth, I’m not stumbling, I’m not wheezing from the effort. It’s a joy. Until I stop. And wake up. And I realize I have never been able to run like that even when I was thin and limber and young.

Of course, then there’s the dreams of running that aren’t a joy.  I’ve been in more battles than a seasoned marine, dodged more bullets than James Bond. When the bullets hit their mark, it’s usually my back or abdomen, and when I wake up, that’s where the pain is centered. There have been a few head shots. Those I wouldn’t wish on my worst enemy.

Not all dreams are disturbing. Some just focus on my insecurities as they relate to my physical self. There was the dream that I was at a cocktail party, and while I was speaking to very important people, I would snort uncontrollably. Yep, my apnea was interrupting. I just excused myself and chuckled a little in my dream and woke up laughing. Last night I dreamed that I hadn’t done my requisite middle-aged-woman plucking and had some massive hair growth on my neck. It was okay, though, because I could hide the hair on my neck with my sideburns…

Everyone has dreams like this at some point. My slumber struggles are not unique. They are a reminder to me, however, that self-care is required. Right now. Self-care needs to start. Now.