13 months after my California doctor wrote the prescriptions for two gut antibiotics to treat SIBO, today is the day I have to face the music. I’ve put it off for this long out of fear: Fear of a mast cell reaction (Rifaximin ingredients: Sunset Yellow FCF, ffs); fear of no reaction, but feeling terrible from die-off (we just arrived in the Cali desert for a month, so it’s really fear of destroying my idyllic get-away); fear of altering my microbiome for the worse, rather than the better (causing more of a candida flare, causing C. diff etc); fear of spending the money, but not not being able to take the medicine (each one was $200!). Also, although the SIBO test was “off the charts” (in my doctor’s words), I don’t have the symptoms, so fear of messing with the gut I know and creating new issues. I haven’t taken an antibiotic in almost a decade–well before I got sick–so, there’s fear there, too.
But I see my doctor later this month and I’m determined to do the treatment before I see him. I now have both medications in front of me, money is spent, no excuses. One of them is compounded in sterile water and needs to be thrown out in a few weeks, so I’m starting now, with one drop, as soon as I stop typing… which, of course, makes me want to keep typing, keep putting it off, what else can I tell you…?
Okay, I’ll quickly tell you a good drug story, which will bolster my confidence. The first medication I was ever prescribed after getting sick was hydrocortisone. The pharmacist said, “If it gives you a headache, let me know.” It gave me a whopping headache and, back then, I didn’t understand my reactions and how I have to start at micro-doses–I didn’t even know you could cut a tablet or open a capsule–so, I just stopped taking it after two days. The ND said she presented my case to her colleagues and everyone said, “Yes, hydrocortisone!” but it was my first experience with an ND and perhaps I didn’t fully trust her, but, more so, I didn’t want any worsening symptoms, so I just stopped going to her. That has been my MO thus far: try not to rock the boat, except very gently, over a very long period of time (and, by the way, for the most part, I have improved over the years (knock on wood, toba, toba), which has reinforced my careful tendencies).
Last year, my California MD Rxed hydrocortisone again. I tried an 1/8 of a tablet in August and felt short of breath, so didn’t take it again until 3 months later. Then I was spurred on by a receptionist at a doctor’s office who started crying (!) on the phone to me while talking about her daughter who needs hydrocortisone all day long, so I tried it again. It went okay for a few months. Then one day it made me feel gittery, spacey and short of breath again. Then, a few weeks after that, it hit me like a freight train. I wrote in my calender: “Shaky, drugged, agitated, buzzy muscles, feel like I’m on speed, then possible blood sugar crash (or maybe just still shakes from hydrocortisone). Then, after hours, a dull obvious-reaction headache and stuffed ears.”
This is what used to happen to me with antihistamines: I’d handle them for days and then, without warning, the same dose would send me into a scary cascade of anticholinergic symptoms (I still mourn the loss of Unisom, which helped a lot with sleep for a while).
But, I persevered with the hydrocortisone (yay, me!) and, last month, something clicked, I could feel it help my body. I can feel the uptick in energy and the decrease in brain symptoms. I give hydrocortisone full credit for getting me through the weeks of packing for this trip and those back-to-back high-step count days. Each morning, I marveled: I’m not bedbound, I think I can do it again. I have no side effects now and I might even try more than a 1/4 tablet. 😉
I guess I should say: Warning: Graphic medical procedure!
When I was learning to insert an IV, I couldn’t find many decent tutorials online (I was only allowed one nurse visit to walk me through it and I found watching people do it was even more informative). Since my Mom is visiting, I asked her to make a video in case it could be helpful for others. This angle isn’t the best for a detailed view, but it’s a good first go.
If I don’t have brain symptoms (which is the true limiting factor to my writing this year) and I start to post something about my illness, about my days, about my lack of coping skills, I invariably think, “You aren’t bedridden, how can you complain? You are able to feed and bathe yourself, are you really going to bitch about how difficult your life is?” Because that’s what I want to do more often than not. Complain. Vent. Rage against the world. And perhaps make some tiny bit of sense out of this existence and give myself some breathing room.
I’ve been so bottled up, I have tears threatening to spill over every day. So, I am going to write about today and preface it with this: To my friends that can’t get out of bed or watch TV or eat whatever they want… to those of you that haven’t left the house in years and don’t have some of the things that keep me sane like my dogs and my husband (I probably should have led with the husband there), I think about you. I shudder to think about you. You inspire and humble me with your resilience and I wish I could change things.
I want to write about the small, but significant choices I made today. It’s a short story and the end of it is I went to bed and sobbed into my pillow because my therapist said I should. He said crying is a primal emotion that serves a purpose and I should let it out, so I did. I don’t know if it helped. I feel the same as I did before, only with swollen eyes, but I appreciate that he gave me permission, for lack of a better word. He’s always telling me, “Get out of your head, stop trying to rationalise everything, stop trying to make an action plan for everything, stop the black and white thinking.” But if I’m not analyzing, organising, planning, executing, succeeding and then second-guessing everything I did, then who am I? That’s a rhetorical question.
I can’t remember the last time I went in a grocery store. Many, many months ago with my husband, I think. Maybe even last year. It’s a big deal, it takes planning and guts. We had a 10% off promo that needed to be used today and the store was a 4-minute drive. They have a deli and I decided that driving there and buying deli food would be less energy than trying to cook something. After all these years, I still marvel that these are the sorts of choices we (those of us with energy deficits) have to make. Driving, if my brain is operational, does not use up a lot of my energy, but washing, chopping, standing at the stove, stirring, whatevering… It’s exhausting. So: drive, park, the deli is right inside the door, get food, come home. Scary when I’m having a difficult health month, but easier, I decided, than the alternative and, if I’m not pushing myself too hard and crashing, then who am I? Again, rhetorical.
I’ve been beaten down recently by a 5-day migraine and bad sleep for months, wondering how to keep going through the motions of survival. In a nutshell, I’m pretty raw and small things feel harrowing. I talked to myself the whole way to the store: “You’re fine, you’ve got this, you won’t pay for this. Red light means stop.” I parked in a handicapped parking spot (with my permanent handicapped parking permit displayed) and shuffled to the elevator that goes up to the store. There’s a small stairwell, too, but I’ve never climbed it in the 4 or 5 times I’ve been at that building. I hear someone yelling across the parking lot. YELLING. Not nice yells. A woman near me says to me, “She’s saying she doesn’t think you’re disabled.” I replied quietly, “Oh, I am” and she gave me a kind look as she started up the stairs and nodded at the elevator as if to say, I can see that. But, also, look at my face! Can’t you see it? How can they not? But they can’t. Maybe in Seattle in November everyone is grey-skinned, sunken-eyed and haunted-looking to a certain extent.
I thought that was the end of it, but the woman in her car was still hollering. She’d stopped on her way out, blocking people, so intent on getting an answer that she’d rolled down her passenger side window and was shouting, “DISABLED? DISABLED? ARE YOU? HELLO? ARE YOU DISABLED?” It was aggressive and accusatory, not inquisitive or, god forbid, compassionate. I had already nodded yes at her, but she continued on. I mouthed, “I am,” but she couldn’t see or it wasn’t good enough. I started to feel very weak because I can’t sacrifice the energy to go talk to her, I can’t sacrifice the energy to project my voice, people were staring now and I felt defensive and emotional and the heat was burning up my chest and, before I knew it, I roared YEEESS! and immediately felt dizzy, immediately had a sore throat. Legitimately — a sore throat that’s still here tonight. We people with ME don’t roar. And, oh, how I miss it. How I miss being enraged and having a good old screaming match, replete with stomping off and door slamming. I used to be really good at that.
The woman shouted back: GOOD! and drove away. It echoed around the closed underground lot and made me feel very small.
I tried to tell myself her heart was in the right place, that she was looking out for disabled people and that I’m glad there are ballsy watchdogs like her in this world… but it didn’t stop the resentment from welling up. She caused this embarrassment, this upset, she caused me to yell when my voice is so weak. And she’ll be fine, she won’t pay for this interaction because she wouldn’t have initiated it if that was a concern. I started silently blubbering in the elevator. I walked to the deli weeping, I ordered the food while sniveling, I wiped away tears while paying. And I bought a pint of chocolate hazelnut fudge ice cream because fuck that lady.
When I went to leave the parking garage, I realised I hadn’t gotten my parking ticket stamped, but there was no way I could walk back to the elevator and into the store. Another example of the small, but soul-eroding kind of choices we have to make. I was so beyond my safe energy expenditure that I worried about not making it home. It was too far to go back and I had to save my steps to get in my house. So, I paid for parking and it negated the 10% off promo that inspired me to venture out in the first place.
When I was putting the things into the fridge, I did it sitting on the floor and when I stood up, I bashed my head so hard on the corner of the counter, that it drove me back to the floor, my vision whited out and stars burst and birds chirped around me. The migraine, which I’d just quelled yesterday with my infusion medications, burst back onto the scene, shooting cyclical stabbing pain through my left eye. That was it. I took my therapist’s advice and went to bed to sob into my pillow.
I do feel a bit better now, so maybe it did help. Or maybe it’s because I’m writing for the first time in over 5 months. Or maybe it’s the chocolate hazelnut ice cream.
See this here? <– It’s a blog post I wrote in November, 2012 which my friend Lindsay liked. Lindsay writes Musings of a Dysautonomiac and I don’t even know how she found my blog. That was in its infancy, when I was just venting to the universe because I didn’t know what else to do with myself, before I even knew what dysautonomia was. That’s 5 years of her friendship and, like so many others I’ve met through this blog and its associated Facebook account, I treasure our relationship. I rely on her/their humour, honesty and nonjudgmental support. She wrote a love letter to her friends and expressed everything I feel better than I could have, so I’m sharing it here. And, in case you’re too lazy to click on the link, I will copy it below.
I am going to document this swiftly before the whole horror fades under the sweet joyous glow of sugar and carbohydrates. Besides the first few years of this illness, which has its own special place in the Hell Hall of Fame, the last few days preparing and preforming the SIBO test might have been the worst 50 hours of my life. There are 2 close seconds: the aftermath of a lumbar puncture, which gave me the 10 on my pain scale to which I compare all else, and a particularly harrowing bout of food poisoning, which I suffered alone on my brother’s bathroom floor for a few days, thinking I might die. But this weekend was worse than both. But let me back up.
My symptoms have been bad since coming back from California, particularly the last month. Immediately after our return, I had to contend with my period, which heightens everything a notch, including emotions. My husband went straight back to work 7 days a week to catch up with his landscaping jobs and the renewed isolation, plus being trapped indoors because of the chilly, damp weather began to take their toll very quickly.
A week after getting back to Seattle, I got the tests done for Dr. Kaufman (the California doctor at the Open Medicine Clinic). I had 39 vials of blood taken in 2 days — the first day, we did 9 vials, but my blood sugar crashed, so the second day we went back downtown and I did the other 29 vials. I completely underestimated the toll it would take. That evening my blood pressure tanked and I didn’t feel good. It took a few days for the effects to wear off. Just in time for family to come over for my birthday brunch, which caused a bad (but short-lived) crash (I already wrote about this last month).
Two days after that, I started to get a throat thing… one of those feelings that, in my old life, would have made me think I was getting sick. The last time I was sick — normally sick with a cold and bronchitis — was almost exactly 6 years ago. That boggles my mind. It is, of course, because I probably have immune activation, but it is maybe even more about being housebound, wearing my mask when I go to appointments in the winter and not letting sick people come into my house. So for 3 days I felt like I had strep throat, was completely couch-bound, stiff, sore, swollen and had a tight chest just like it used to feel before I got a chest infection. For 2 nights I slept over 8 hours, which should tell you right away I was being beat down by something different because I’m lucky to ever get more than 6 or 7 hours sleep. These symptoms of acute sick on top of chronic sick scared me. I have read so many stories of relapses and crashes caused by a common cold. I haven’t had any lung issues since the first year of this illness and, as a previous asthma/bronchitis/pneumonia sufferer, I am incredibly thankful that I don’t contend with those symptoms. So, I hit it with every tool in my virus tool kit, including IV fluids (so brilliant to be able to hook myself up to fluids; see my first time here) and it didn’t progress to a full-blown cold or flu.
The day I started to feel better, I did an immunoglobulin infusion. From that day on, I’ve had a headache. It has waxed and waned over the last 3 weeks, but yesterday it was in the top 4 worst headaches of my life. More on that in a minute. I’m not finished with the litany. A few days after the infusion, I stopped taking all of my vitamins, supplements and even prescriptions that aren’t essential. I needed to come off my candida treatment for 2 weeks before doing the SIBO test, so I just stopped everything. I thought this would be a good break, but in retrospect, perhaps it contributed to this past Very Bad Fortnight.
One thing I did not intend to discontinue was my hormone therapy but my doctor refused to call in my compounded progesterone prescription because I hadn’t seen her in person in 4 months, so I had to abruptly stop it in the middle of my cycle. Maybe it’s no big deal, but I’ve been taking it for years and it regulates my periods and calms my reactivity, so messing with my body and, more importantly, the difficulty dealing with my doctor caused a lot of stress (I didn’t want to see her until I had the test results back from the 39 vials of blood, so I implored her to extend my Rx, but it took her too long to answer and my period decided to come and then she only called in a few to tide me over until our appointment, but they wanted to charge me $2.50/capsule for such a small order, so I just went to see her (there was no discussion of my hormones and no changes made, so withholding the refill felt like blackmail to get a very sick person to make an appointment). Then it took 3 more days after our appointment for her to call the progesterone into the pharmacy… so I was ultimately off of it for 2 weeks. Sigh).
Speaking of my pain scale, the week before last I had a bowel spasm that was a 9. My first 9 since The Evil Calcium Headache of 2012. I have experienced a lot of bowel issues in my life — just the day before this spasm, I had experienced such vicious heart palpitations during an enema, that I thought I might collapse with vasovagal syncope — but I didn’t know this sort of pain was possible in the bowel. From an internal muscle spasm?? Seems far-fetched even now, having experienced it. It only lasted about 5 minutes, but for that eternity I couldn’t move from the bathroom floor where I had crumpled, I could barely breathe, I was making some weird, uncontrollable, primal, guttural, airless moan. If it had gone on a few minutes longer, I would have called an ambulance and probably would have agreed to morphine, even though I’m allergic to it. As soon as I was able to crawl, I did a castor oil pack and heating pad and the spasm eased up. The aftershocks and inflammation continued for days, however…
Right up until my period came and my chronic headache became a chronic migraine. The old kind that has me wincing at every noise and squinting at every light. The kind of headache that makes it difficult to move my eyes, like the extraocular muscles have swelled taught with inflammation. The kind that infects my neck and spine, so I can’t turn my head, bend over, cough, sneeze or poop without whimpering in pain. The kind that causes nightmares about loved ones getting their skulls bashed in and destroys sleep with constant throbbing wakings. The kind that causes my stomach to flip with every smell and my poor husband: “Please don’t put your foot down so heavily on the floor.” “Please don’t ever use that shaving cream again.” “Please don’t sharpen that knife or stir that pot.” “Please don’t smoke that cigar out on the porch because it sticks to your clothes.” … etc. I became very weak over the next few days, like the life-force was drained out of me. Muscles not working, hard to converse. This is a completely different feeling from my typical exhaustion or heavy muscles. This is how I imagine it feels if someone is on the ground, bleeding out.
And then, just like that, a depression switch was flicked in my brain. I’ve only been really depressed twice before, the worst was the winter of 2013 after I’d gone steadily downhill for 2 years and spent most of my time in my bedroom in pain. This episode wasn’t as bad as that — I am sustained by a bit more hope these days because I’ve had some staccato ups punctuate the continuous downs — but it still sucked. I’ve cried every day and had very black thoughts. The relentlessness of my symptoms have highlighted the improvements in California, making me terrified of what it means for our lives if my environment is keeping me sick. And the interesting/engulfing thing about depression is, it doesn’t matter whether you rationally know that things will be better on a different day or could be better in a different location, you still want to give up and end it all. Nope, can’t do this anymore, I’m too tired. And when that Black Cloud of Despondency starts to dissipate, like it has today (oh, thank god, please stay away), it seems ludicrous and selfish that you had those dark thoughts.
But let’s get to the crescendo… The last 50 hours… The prep for the SIBO test… If I was ever in doubt that my body doesn’t do well on a low-carb diet, this weekend proved it. It feels miraculous that I’m able to sit up and type right now, honestly. On top of bad physical symptoms, little sleep, no supplements and sadness, I started a 48-hour prep diet for a SIBO test ordered by Dr. Kaufman. SIBO stands for small intestinal bacterial overgrowth. I’ve done the SIBO diet and test once before and don’t remember it being very difficult (aside: my post is here and you can see that the National University of Natural Medicine has stolen my food photo for their website here, which I find highly amusing). For the prep diet, you are only allowed to eat meat, eggs, white rice and fats for 12 hours and then 15 hours of fasting, which doesn’t sound too bad except, if you are constipated (or in my case, the most constipated person I’ve ever met), you have to do the diet for 2 days before the fast. I eat all day and night — it steadies my blood sugar and maintains my weight — and, although I eat meat every day, I don’t eat a lot and I only eat about 2 or 3 eggs a week. So, this was hard. Friday night, I stopped eating at 1am. I was hoping I would wake up Tuesday morning without an appetite, which often happens in the mornings, but no luck, I was starving. I ate a scrambled egg with turkey. A little later I ate some rice and butter. Then chicken breasts. By the time my husband made some “meat broth” (no bones, cartilage, herbs or veg allowed), I was very nauseous — which is unusual, I have an iron stomach — but still hungry because I couldn’t physically choke down enough meat to fill me up and too much white rice without sufficient veg and starchy carbs causes my blood sugar to crash because of reactive hypoglycemia. The nausea was exacerbated by pain throughout my body, a pulled muscle in my back and my migraine ratcheting up. If I hadn’t prepared for this test for 2 weeks already, I would have thrown in the towel and taken steroids, acetaminophen and an antihistamine, but I had to shudder through it.
Yesterday was indescribable (but I’ll try). I woke up with my brain swollen, neck stiff and head shattered. It felt like that lumbar puncture headache: I had to be horizontal to function. And, of course, I was starving. The smell of the meat broth almost made me vomit. My arms shook as I force-fed myself an egg and turkey. Later, I ate beef stew meat and rice, but, again, not enough to fill me. I just couldn’t get it down. I spent the whole day in a weak ball on the couch. My husband had to half carry me to the loo because whenever I sat up, my limbs started shaking and I broke out in sweats. This was more than hunger on top of a migraine. I googled meningitis and encephalitis symptoms and actually considered going to the hospital. I’ve managed to stay out of the emergency room for the entirety of my illness, so I don’t consider it lightly. But, really, what could they do? IV fluids, which I can do at home; a spinal tap, which I’ll refuse; a brain CT, but I’ve had way too much radiation exposure in my life; an MRI, but I’ll refuse contrast; a blood test, which will be negative. So I stayed put. And, besides, I checked my blood sugar, blood pressure and temperature and, inexplicably, everything was stable. Actually, this made me a little more scared because I like having a reason for abnormal symptoms — something I can fix. The entire day, I kept saying to myself, “You’ve come this far, just 20 more hours… 15 more hours…” I couldn’t stomach anything after 6pm and I finally got to sleep at midnight, but woke up at 3:30am and 4am and then every hour, feeling sick and in and out of dreams about food. I got up at 7am and my head felt a bit better, but I was so emaciated and weak (I lost 3 pounds in those 2 days and I didn’t have 3 pounds to lose).
For the SIBO test, at least an hour after you wake up, you drink a lactulose solution and then take a sample of your breath every 20 minutes for 3 hours. Only 4 more hours. My kingdom for peanut butter on toast! It was torture. I was breathless and, with every movement, my heart rate skyrocketed. I’m not sure why I have to eat so much, so often, of so many foods in order to feel like my muscles and organs — even my cells — will function. It could be thyroid related: my metabolism is still revving too high. But then the icing on the cake … No, the cherry on top of the icing… The pièce de résistance of the whole month de hell: An hour after drinking the lactulose solution, my body responded how it always does to a shot of sugar without a meal chaser: my blood sugar crashed. No, no, no… We are in the 11th hour, I have been off supplements, I have gotten through the prep diet, please, body, do not fail me before I complete the test. I sat very still, tried not to expend energy, willed my pancreas and liver to do their jobs and release some glucose, but the shakes and my hammering heart… It was too much. I thought I might black out getting the phone to call my husband, my words were halting and stuttered, my vision tunneled as I tested my blood sugar. It was 57 and I was getting worse, I had no choice but to drink some apple juice. After only 3 ounces, I could feel my body stabilise. It was like those starving Naked & Afraid people who feel energy flood back into their bodies after eating a minnow (if you don’t watch that program, what are you waiting for?). I’d last about 3 hours on Naked & Afraid.
An hour and a half after the hypoglycemic crash, I got diarrhea. For someone who hasn’t moved her bowels in over 2 years without an enema, this is a big deal — body’s in trouble. I finished the SIBO test and wrote a note that I had to drink apple juice and all I can do is pray that they can glean something from my samples. As soon as I blew my last breath sample, I drank a huge mug of proper Irish tea with milk and ate a piece of banana bread. I moaned with every sip and bite. Potable, edible life. Then I ate a seed bar, some nuts, some melon. And then half an acorn squash and half a head of steamed cabbage. And an oatmeal raisin cookie. Now I’m sitting at the table for the first time in about 10 days feeling very grateful for no shakes, my normal-level pain, the food in my belly and the energy available to write this. I don’t even care that my churning, bloated, gassy bowel probably means I have SIBO and will have to take antibiotics. All I know is I will never do this test again.
I have so much to write about, so much to catch people up on and document, but the longer I go without posting, the harder it feels to break the dry spell. Each month, I think, “Write that in a blog post, you’ll want to remember that,” but I never feel like I can “waste” the time. Especially in the last 6 months. If you’re friends with me on Facebook, you know that I have lost all available energy for months to fighting horrific healthcare battles. Energy that could have been put towards conversations with loved ones, time playing with my dogs, reading or writing…
So here’s a recap: From November, 2015 to around August, 2016 I was slowly getting stronger from my immunoglobulin infusions. I estimated that they brought me up from about 15% of normal functioning to about 20%. That 33% increase was miraculous. It didn’t exactly change the way I lived my life (I still had the same symptoms, was still mostly housebound, still had to manage energy carefully), but it changed my control — things became predictable, which reduced fear and let me branch out. Payback was shorter, not as scary, I could do more and knew I wouldn’t make myself permanently worse. That last point was life-changing for me. For 4 years, it felt like anything I did made me worse, I was desperate to hold on to the functioning I had and couldn’t take many chances without being forced down a notch — and I was always so scared that the new lower notch would be forever.
So, last year we went to the Washington coast for 5 days and I didn’t feel terrible. I had two friends visit me at my house and we talked for hours and I was okay. My family came to Seattle for their annual vacation (2 brothers, sister, mother, spouses and 7 nieces and nephews) and I was able to go to their rental house 4 days in a row for extended visits. This was the turning point, though, I think. I left it all on the stage those 4 days with my family. Friends with chronic illness, you know what I mean — it’s such a difficult act to appear normal and, from what I’m told, I gave a great performance that long weekend. Each day I came home and literally crawled on all fours to my bed. I lost 3 pounds in 4 days because between each visit all I could do is lie in bed and hope for a enough recovery to try it again. There wasn’t a moment that the payback wasn’t worth the incredible time I spent with my family. I’ll have to write a whole blog post on it one day. My nieces and nephews are everything you want kids to be — sweet, kind, honest, inquisitive, funny. No bratty-ness, no meltdowns, no selfishness. My brothers are doing something right.
Right after that visit, in August of last year, I started to nosedive. I had an increase in migraines, sore throats, exhaustion, muscle pain, unstable blood pressure. I was trying out (very expensive) hyperbaric oxygen treatments at the time and thought they were either causing or exacerbating my symptoms, so I stopped those, but continued to go downhill. In November, I started the descent into health insurance hell that lasted about 4 months. I’m not going to get into it right now. There’s too much to tell and it’ll make me shake and cry angry tears as I type, which I’m not up for. Suffice it to say it is an evil, vindictive, nonsensical, black hole of a system and nobody has accurate information about anything when it comes to healthcare for people under 65 on disability. And, even if they do have the knowledge, it seems the vast majority of health-related representatives (or is it all humans? I’m guessing it is) are inept, lazy, selfish and genuinely couldn’t care less about helping someone in need. My friend Michael had one of these phone calls where he wound up saying, “How do you sleep at night?” to the representative who was outright lying to him. Essentially, that’s how I spent 4 months — all available energy every day dedicated to battling my brain symptoms so I could continue to micromanage every person who held my health in their hands, taking copious notes and making enemies, as I waded through the morass of phone transfers, misinformation, hours of stuttering hold muzak, false promises about call backs and looming deadlines… While thinking, how do they live with themselves? Not to mention incompetent, petulant doctors that I need so I can’t I leave them.
When my mother came to visit after Christmas, she said it might have been the sickest she had ever seen me. I wasn’t even close to the sickest I’ve been, but it still says something about the severity of my crash (to be fair, I had allowed myself to have one of those total meltdown, let-it-all-out, “I’m so sick of being sick” sob-fests in front of her — the kind that I usually rein in because they can make me more reactive and wipe me out — which can’t be easy for a mother to witness). My strength started to get marginally better in February. I think it might have been helped by an increase in my thyroid medication, but it was kind of a double-edged sword because I also became horribly hyperthyroid for about 3 weeks before I realised what was happening. I had also stopped going to my weekly appointments (physical therapy, myofacial, counselling etc.) and had stopped my immunoglobulin infusions because I lost insurance to cover them, so perhaps the break from obligations and weekly medications helped me gain strength.
This spring my husband, dogs and I drove to California for an appointment with Dr. Kaufman at the Open Medicine Clinic and we stayed 6 weeks for a holiday and to test how I felt in a different climate. I will write about those big events in another post. What I really came on here to document is how I’m doing now. I want to keep track of what I can manage and how bad the payback is when I indulge in social time. Last November I went out to brunch (out!) with 4 old friends (you can imagine what it meant to me to be invited). I’m pretty sure I appeared normal throughout the 2-hour meal, but payback was vicious. My calendar notes say: “very bad today, body totally shut down, in bed, shaking, crashing, crying, guts feel swollen and full of bricks, heart, muscles, eyes burning.” It lasted days. In early February, my brother was at our house for 7 hours. I spent his visit relaxed on the couch in my pjs, but we talked and laughed like normal people, animatedly, and I didn’t rest once (unheard of a few years ago). I went to bed that night flying high, so happy from our conversation, so grateful to feel fine… And then, 3 hours later, woke up in the middle of the night feeling poisoned, shaking all over. My calendar says: “severe payback, swollen throat, can barely swallow, hard to breathe, every muscle in pain, bad stiff neck and headache, shooting pain in bowels, nose stuffy and runny.” The worst of it only lasted about one and a half days.
Yesterday, we had family over for brunch to celebrate my birthday. Although the whole shindig lasted 3.5 hours, there were only about 2 hours during which everyone was here — 4 adults and a child, not that many people. My friend Z said I looked great, she was so excited by how different it was from other years. She said, “I know you’ll pay, but today was normal.” This is everything I could hope for, BUT… the big but… But, it was hard. I can power through now, I have the ability to put on an excellent performance. If my neurological symptoms stay away, I can do quite a bit physically (although standing for a long time still causes excruciating pain). So, yesterday I showered, dressed, got out plates and cutlery, made some waffles and chatted with my family. That’s about all I did before things got difficult. There’s this weird thing that happens when you’re ill, but you’re putting on the normal act: You lose time. Or at least I do. Do any of you? For example, I remember everything about the first hour yesterday — when I was chatting with my husband and sister-in-law. Then our friends and their daughter arrived and things are a little fuzzier. I remember the conversations, but they’re not in sharp focus. Then my sister and her dog arrived, right around the time I wanted to make the waffles and apparently that’s when my mind went into … not quite “survival” mode, but “keep it together” mode: I was talking to 2 people in the kitchen while trying to focus on cooking and, although I made good waffles and I’m sure I said the appropriate things at the appropriate times during the conversations, I cant remember any of it clearly and couldn’t tell you what we talked about. Same thing while we ate — I clearly remember how delicious the food was (of course I do), but recalling things that were said is akin to trying to remember conversations I had while drunk, it’s murky, and it worries me that I was rude or unresponsive — to my favourite people, who made the effort to visit us, no less.
When I was saying goodbye to them, I could barely see. My vision was tunneled, I had a wicked headache and my brain was a buzzing scream, but being the fastidious person I am, I couldn’t not load the dishwasher. This tipped me over the edge. I was staggering around the kitchen, using immense effort to coordinate my muscles and concentrate enough to lift and place dishes. My eyes weren’t tracking properly, my heart rate was running high and my legs were burning terribly, but I just wanted to come to an end point… Stupendously stupid stupidity. I slid to the kitchen floor, panting, crying, literally unable to walk out of the room. I slurred: “Nothing is worth this. I was trying so hard to be normal, but no social time is worth this.” My husband said, “Why don’t you just be honest?” and I said, “Because THIS is honest.” On the floor, weeping is honest. He helped me to the couch, I was having a hard time sitting up, it was just utter energy depletion, muscles unable to work. I immediately fell asleep in a sort of emergency power-down. I started to feel a bit better about 5 hours later and today I’m okay besides another bad headache and stiff neck. That’s the difference now — when it hits, it hits hard and scares the bejeesus out of me, but it doesn’t last long. So I take it back, it was worth it. I ate decadent food in the warm sun in our beautiful garden with some of my favourite people on the planet (and to Z’s credit, she tried to stop me from over-exerting myself over and over and I bullheadedly kept telling her, “No, I want to do this! I’m fine!”). But of course it was worth it and I’ll keep trying to make this life have more life in it and repeat to myself during the scary times: this, too, shall pass.