Confession Time: Since all the changes in my health this spring, I feel so much better most of the time that I sometimes fear losing touch with my base. I also fear a lot more often that someone, not just ignorant healthy people, but another spoonie, is going to accuse me of faking. I’ve lived with both the fear and reality of healthy people doing it for so long these things hardly faze me, but to take it from another sick person, that I just couldn’t bear and unfortunately, I’ve seen or heard about it happening in online support groups more than once.
Of course I had to laugh at both of those fears after an overwhelming sense of triumph washed over me as I brushed my teeth today, fresh from my first bath in a week. Those teeth weren’t just wearing sweaters; they had parkas, gloves and boots. If you’re a spoonie, you know that sense of triumph is real. It’s not a matter of just putting these things off; it’s being utterly incapable of accomplishing them. If it’s a matter of choosing to prepare a light meal or using your only available energy to wash, sustenance comes first.
I’m not proud of how I let my hygiene go this week. I’m astonished. I lived with the kind of pain and symptoms I experienced this week for years, often worse, and still managed to brush my teeth just about every day and at least sink bathe and dry shampoo every couple of days if I couldn’t make it to the bathtub. What was so different about this week?
Triggering My Flare
For one, I was completely unprepared and that hasn’t happened in some time. If you’re newer to dealing with severe chronic illness, you probably don’t yet know your patterns or triggers, but if you’re a seasoned veteran like me who has mostly found the right diagnoses and treatments, you probably have a pretty good idea what’s going to upset the apple cart. We live our lives on high alert and have a long mental list (if not an actual physical list, because hello, brain fog) of things to avoid and symptoms to watch out for that usually tip us off.
I knew I was doing too much and I was already backing things down. I had a couple of outside stressors there’s little I can do about, though. I also have new obligations to outside parties and those are things I haven’t had to deal with since 2013 (full chin drop). Even when I drove for Uber at the end of last year, I still felt beholden only to myself. I’ve definitely been feeling more stress and stress is a big trigger, but I thought I was doing okay managing it.
Then I made a few questionable diet choices, all while writing about the do’s and don’ts for GP (this is the irony of being a health blogger sometimes, we aren’t always as good at practicing as we are preaching). You see, I’d had a fairly good experience devouring some Chicago Classic Deep Dish this lovely little neighborhood joint makes and I let that isolated incident go to my head. Before long, I was attempting barbeque sauce on some ribs and a brioche bun with mayonnaise on my hamburger, all in the same week. While some of these things aren’t a no-no for GPers, they sure as shit are for my MCAS/mold intolerance.
I believe the final nail in my misery coffin was my attempt to take my Topamax down to 25 mg per night. I successfully managed to take it from 75mg to 50mg with only a week of mild migraine flares, but when I attempted to go down to 25mg, the flare of migraines persisted, even for a week or so after I went back to the 50 mg dose, which means I’m probably getting just enough, combined with my Verapamil, to keep them under control. This is where I like my medication. No use in poisoning myself more than necessary. Still I’d like to get my Verapamil higher and my topamax lower, as I suffer both cognitive and mental health issues with the Topamax, not to mention what it does to my taste buds. This I’ll be discussing with my amazing head pain doc, but it was in error for me to be playing games with my diet while attempting medication changes. Of course, I didn’t really know I’d be paying for the medication change for so long.
I also wondered, but of course cannot confirm, if the outrageous pollen counts (currently over 10 on a 12 point scale) could also be contributing. I’ve always had the worst time with my allergies in the late summer/fall and suspect ragweed is a big problem. I haven’t been out at all, since Thursday last and that was very briefly masked. With pollen counts this high though, it’s quite possible that our HEPA allergy filter in the HVAC system that was just about to turn 90 days old was no longer keeping up, so my husband changed it out on Wednesday night.
Here we are on Friday and it’s the first day I’ve felt a little less like something that’s been scraped off the bottom of a combat boot. All these little things combined became quite the big deal. I had several migraines with very vivid auras and more light and sound sensitivity than I’ve dealt with in over a year. I went through several days of bloating and distention with pseudo blockage and weight gain. Then I had diarrhea for a few days once the inflammation and blockage began to clear. I was nauseated and able to eat very little through it all, though of course the hunger was intense the last few days. I also dealt with a few unusual subluxations and the elbow I’ve been nursing forever that’s finally been coming along with the help of AloeMD has been a lot crankier this week regardless of the new treatment. Of course every fiber in my being ached, making it impossible for me to tell where the bone pain began and the muscle pain ended. I still laugh about the rheumatologist that told me all of my pain was muscular and I was imagining my joint and bone pain. How the fuck would she know what I felt? Apparently she didn’t even know MCAS exists because she told me the only way I’d have bone pain was if I had cancer.
Why Ask Why?
I’m covering all of these symptoms, because they mean something. I wouldn’t have had such a tortured tummy if I hadn’t exposed it to so many triggers, for example, so I know I’m on the right track about eating the wrong stuff. Besides, I’d already tested the stuff before. I knew it was bad. I wanted to hope I was being too cautious or perhaps my body had healed more and I let my boredom and desperation drive that hope. That’s over now. I’m clear on what’s what. I also had sinus and eye symptoms, to lesser degrees. Does this mean I’m right about the pollen? Could be, but food allergies can cause rhinitis, so again there’s really no way to tell.
I know some people think that this type of analysis is meaningless, that we have no control over our flares or the state of our health. I think that’s a load of rubbish that only makes people feel powerless and fail to understand how much control we can truly have over our conditions. I’m living proof. While none of us can or ever should blame ourselves for having our illnesses in the first place, nor could we control absolutely every flair or aspect of our disease, how we care for ourselves, what we put in our bodies, how much rest and exercise we get, the environmental and emotional stressors we expose ourselves to, and even the joy we get out of life, are huge predictors of our baseline and outcomes. They can be the difference between living relatively pain free lives and being perpetually tortured by our symptoms. For some of us, they can literally be the difference between life and death.
I went for years believing I had no control over what was happening to me and I only continued to deteriorate further and further until I lived in a room in a bed with no light and no interaction with the outside world. Every interaction was unbearable to me. I had to rehome my animals. I couldn’t use cell phones or computers. I could barely interact with my own husband.
Why I Really Fear Accusations
Now I’m worried I’m too healthy to belong to the spoonie community anymore until I slip up and weeks like these come along. This is laughable of course and says more about my social anxiety and PTSD than anything else. I’m still a prisoner in my own home because I react to everything I come in contact with. I still have at least two days a week where I feel too shitty to be productive. My stomach will only process around 20 different foods total. Pacing for fatigue, medications, mobility devices and medical aids are and probably always will be a daily part of my life. I just also happen to be able to work out 4-5 times a week and have a much clearer head, so I can be more productive mentally. This doesn’t mean I’m a healthy fully functioning person. It means I’ve found effective ways to get a better baseline and I shouldn’t feel guilty about that even if it does create some separation between myself and patients who haven’t been so lucky to find the things that work for them yet. I still have my mobility aids and my energy limits and my daily symptoms just like everyone else, even if I have learned how to create more good days for myself.
I believe these fears came up because I became aware of a rash of incidents in support groups where people were accusing otherof faking their illnesses. I found this astounding and tried to imagine how it would make me feel to have one of my own turn on me and accuse me of faking after 19 years of being denied a diagnosis by the medical community and having my own family level similar charges as I slowly declined, feeling utterly alone and completely hopeless. Would I be devastated enough to try to commit suicide like one girl?
I find it terribly sad that a person with a spoonie condition could ever bring themselves to level such an accusation at another spoonie, knowing it takes an average of 12 years to get diagnosed and knowing that disbelief is something we face from loved ones, acquaintances, bosses, coworkers, the social security administration and medical practitioners every day. The one place we should be safe from these types of accusations should be our support groups. Even if we suspect someone is faking, it’s not our place to intercede. We’re not doctors. We’re not mental health professionals. We don’t know their whole story. We haven’t run every test under the sun on them and read all the results. We’re in no way qualified to diagnose someone with Munchausen’s or Somatization. Hell, most of the doctors all too fond of whipping out these diagnoses all too readily aren’t even qualified to hand them out and often do so prematurely. And the spoonies who want to defend the people doing it? Shame on YOU.
I’ve actually sat on this knowledge for a while in large part because I feel terrible ripping the blinders from the eyes of those ignorant to the fact that these things go on in our own communities and support groups. It’s hard to know it and still participate, still feel safe. But in the end, I felt like it’s the unacknowledged ant in the room that becomes a whole horde and before you know it, you’re living in thee middle of an ant farm. This is where being empathic and having PTSD is really inconvenient, I guess. I imagine, I find the pain and identify with it and it stays with me, another rock on worry mountain.
Could these thoughts have contributed to my flare? Emotional stress is a huge trigger for me and obviously anything that heightens my anxiety is an emotional stressor, but it’s not like I was obsessing over these thoughts. Allowing myself to rest and relax during my flare gave me time to think more about where these feelings were coming from and work through them, though. Every aspect of a spoonie’s health is important. We have to work to protect that health for each other, being sure that we have each other’s best interests at heart when interacting. As the old adage goes, if we don’t have anything nice to say, maybe we shouldn’t be saying anything at all.