It's a blog

  • What others are owed

    This has been something that I’ve been thinking about lately since I had a (sort of creepy) conversation with someone on Reddit.

    It was about how able-bodied people sometimes say “why can’t you just..” when they’re with you and you’re having a flare.

    Now this strikes me as a bad faith type question in general. If we are together, doing something that may cause me a problem, I’ve told you that I am not well and I have briefed you. I am not going on a small hike with you and giving you the pots surprise of me passing out or fibromyalgia’s gift of just randomly making shit hurt whenever it wants to.

    I tend to openly disclose stuff in situations where it might come up as a courtesy. If you wanna nope out of a hike, you should be able to make an informed decision. Don’t wanna go to an amusement park with me and my fibromyalgia? I accept and respect that. I don’t wanna be someone’s problem or ruin anyone’s time.

    If I’ve informed you about all of this and then we go, and you say something like “why can’t you just.. it’s not that hard.. all you have to do it..”

    I’ve learned something about you as a person. You can’t tell me it’s all cool and then try to make me feel like crap afterwards.

    If I am trapped with you somewhere, you might get a kind “hey sorry I told you this might happen but I hoped it wouldn’t..”.

    Depending on how egregiously you show your ass, you may get the nasty answer. “Of course you’re confused that others can experience issues you can’t. Empathy is an advanced concept.”

    I. WILL. MATCH. YOUR ENERGY.

    Please note, people with mental disabilities, children with questions about my condition, or people that appear to be genuinely attempting to understand what’s happening do not get the nasty answer.

    A comedic side note. My phone is a sex pervert.

    Every time I type nasty my phone suggests “masturbating” as the next word. My phone thinks I am way more exciting than I am. Sorry, google. It must be very disappointing every time I type answer instead.

    But back to the post and what others are owed. Turns out that it’s an individual choice for anyone who’s got illnesses. But what I don’t think we owe anyone is our humiliation for what we are not able to do, or because someone is being deliberately mean to us. There are times for gentle explanations and times to match energy.

  • Stuck in a loop

    So, my downstairs neighbors are assholes. Loud at 4am, slamming doors and vacuuming before dawn, screaming at each other and their kids. Dogs barking for hours on end. Loud enough that, through my floor, I know all of their drama. You know… Real salt of the earth types.

    We are waiting for our house to be built, and I can’t wait to move away.

    Anyway, so after this morning’s door slamming and yelling theatrics, it was 5:30am and I was laying in bed, thinking. Yes, I know that no good thoughts happen at this hour. Today was no exception.

    I was doing my normal inventory of “what hurts today and what do I need to accomplish” when my brain decided that it was a good time to revisit the death of my mother.

    The pertinent background that you should know is that she died of ALS many years ago. One of her feet had some trouble lifting and two years later she died in her recliner because her body just stopped working. My father found her, he asked me to take off her wedding rings so they didn’t get lost. Watching her waste away was the hardest thing I’ve ever endured.

    That said, I would take the dizziness, aches, pains, gut distress, tachycardia and all of that forever to have her back. Just to be able to talk to her. It’s been over a decade and I still sometimes go for my phone to call her. But enough about this part.

    What really strikes me from that time when I look past my own pain for something useful, (because that’s always what I try to do) is that she handled her body giving up on her with a ton of grace. Always kind, mostly positive considering her circumstances, and always genuinely grateful.

    I remember once she was eating and dropped her spoon on the carpet. She was relegated to spending most of her time in the recliner because she wasn’t super mobile at that point. So I went to grab it, put it in the sink and get her a new one. I just remember her saying, “No no, it’s fine it just fell on the ground.”

    My parents are not messy or dirty people. Quite the opposite actually. But in any case, we had clean spoons and I wasn’t gonna let her use a spoon that had been on the floor, ya know. She didn’t have much dignity left, being reliant on my dad to take her to the bathroom, bathe her, etc. like fuck, I can’t help that but at least take this clean spoon.

    My uncle was there at the time and he told me when I left the room, she said that I took such good care of her. In the face of all of the shit she was going through, she was so fucking grateful for the bare minimum.

    If I do anything with the significantly better hand that I’ve been dealt, I want it to be that. Handle life and its challenges with grace and gratitude.

    I am getting there. Maybe I am taking the long route, but I am getting there.

    Post-shower, chugging my morning coffee, it was an early start to the day, but.. at least it started.

  • Adjusting my own expectations

    One of the things that I have always had the most trouble with is definitely the concept of patience. Even when I was young, once a decision was made, I was “well, let’s just get on with it then, shall we” type.

    I have always had this idea that, one day, id be running the show somewhere. Without being gross, I think I am pretty smart and that my critical thinking skills are top notch. Pair this with my tenacity/impatience.. that screams leadership and successful to me. No matter where I landed, I was always thinking about more. What’s next, where do I go from here?

    Over the last year, I have been slowly forced to change my mindset. I no longer have a fountain of renewable optimism that I can do anything. I recognize that brain fog has made me less sharp in some ways. That has been one of the most humbling things about chronic illness. I don’t want strangers to think I am sick, sure. But I really don’t want them to think I am dumb. A lot of my positive self image is wrapped up in being quite clever. Solving problems. Finding ways to work smarter, not harder.

    Luckily I have a job that has allowed me to truly not really worry about it. In the heights of brain fog and physical discomfort, I can basically do it on autopilot without too many negative consequences. My manager, who is fucking amazing and supportive, keeps asking me where I want to go, what roles I want to move into, etc.

    Year and a half ago me would be overjoyed by the fact that my usefulness is being recognized. Me, today? I just want to coast a bit more until I figure out what the new normal looks like. I don’t want to have to have a doctor’s appointment every month and half with my rheumatologist, cardiologist, immunologist, endocrinologist and GP. Sadly, I am not there yet.

    I am starting to wonder if maybe the best course of action is to be the best at what I do right now, and set a new standard for that. Can I feel successful in that?

    It’s hard to say, but I guess I will find out.

  • An epiphany

    One of the most frustrating and complicated things about chronic illness is trying to determine whether your symptoms are normal or not. Lately I’ve been having some pretty wild insomnia.

    We’re talking, wake up at 3am, restless legs, and sit there until morning type insomnia. 7mg of zopiclone type insomnia.

    Well, I had an epiphany that it might be my duloxetine because it makes me a bit sleepy but I usually don’t sleep right away after taking it.

    I switched to mornings and about a couple hours after I took it, I realized I couldn’t stop wiggling my legs. Duloxetine gives me restless leg. It only impacts about 5% of the population. Lucky meeee!

    It’s a constant struggle, though, trying to figure out whether a new symptom is just the new normal or something you can impact with a small change.

    Meds? Illness? Peri menopause? It’s hard to say!

    I guess it’s time to slowly unpack the rest of my symptoms and see what I can manage now that I know what I am up against.

  • After 10,000 years, I’m finally free

    .. AND ITS TIME TO TAKE A NAP.

    Maybe after a teeeeeeny tiny nap?

    The relief I felt taking off the Holter monitor this morning is truly immeasurable. The pads mostly came off easy, but I have big red patches due to the adhesive. Allergy to every adhesive ever? Check.

    Anyway, today is the second day of my week off from work, so I am gonna do something relaxing.

  • I am awful, thanks

    I went this morning to do an EKG, a 24 hour holter monitor and a heart ultrasound that I didn’t realize I was getting.

    A couple things. Laying on my side on the fairly hard table with my arms stationary while the (very nice and kind) nurse jabbed at my boob for a half hour could have been nicer. I was laying there thinking, this is gonna hurt later.

    Then she tore the stickers off.

    Then I got the EKG, and more stickers. Then the lady tore those off. That also hurts.

    Then, once again, more stickers and this dumb monitor and tracking sheet. Write down when you have symptoms.

    *checks paperwork*. Report palpitations? There are 12 lines here. I can feel my heart rate anytime I stand, most of the time when I sit. Like… I get dizzy when I stand, periodically sitting down, and sometimes when I am actively doing something basic like folding laundry.

    Anyway, fast-forward to the evening and I feel like I’ve been in a car accident. Bruised and beat up, and … I think I may be allergic to the adhesive on the pads. I am so itchy and wanna tear them off. But, alas, 14.5 more hours.

    On a funny note, I did see the best window sunshade of all time.

  • A reluctant milestone…

    So we are approaching a somewhat shitty milestone. It’s been just about a year since I first tried virtual medicine because my hands hurt. The doctor seemed quite sure that I had some garden-variety arthritis or a repetitive use injury because I type all day.

    Celebrex didn’t really help so I finally broke down and went to a ‘for-pay’ doctor because the Quebec healthcare system is so messed up that it’s basically impossible to see a doctor otherwise without a trip to the ER.

    6ish months and two appointments later I was basically told I had fibromyalgia and that he didn’t treat it, so go away.

    Turns out my thyroid crapped out and that I also had fibromyalgia. My new rheumatologist in Ontario called it during our first appointment in August, and confirmed it with blood work.

    In the last year I’ve gone from “is this carpal tunnel?” to a set of new, awful and sometimes debilitating host of symptoms.

    So, yeah. It’s a reluctant milestone and kind of a shitty one.

    Yesterday hubs and I went out for an early dinner. I had a beer.. a single beer.. and it felt like my heart was beating out of my chest. Lesson learned. I get no beer or joy, apparently. Later in the evening we went grocery shopping to beat the snow and I was clutching the shopping cart so I didn’t pass out.

    On the bright side, my dog is officially winter ready.

  • .. a woman of a certain age..

    As a woman of a certain age with a few different conditions that experience more than a bit of brain fog, I find myself forgetting things a lot.

    In the spirit of adapting and overcoming instead of focusing on parts of myself that I’ve lost, I try to stay focused on solutions. It is one of the key traits of my personality. Problem solving in the scope of things that I excel in is kind of my thing.

    adapting and overcoming, man outdoors with dirty face

    But back to that adapting part.. for the brain fog, I have been calendaring anything and everything. Trash needs to go out? Reminder set. Heartworm pill for the pup. Calendar. Bloodwork, doctors appointment, payment to the home builder? Calendared.

    It seems to be working and allows my “gotta get it done now” anxiety a bit of a break.

    Where I have not mastered this is with knowing the limits of what my body can do. I recently got a shower chair for myself because sometimes I get tired and dizzy in the shower. For some reason it’s a bit tougher for me to just accept that I need this help.

    Thankfully I am still able to walk and move around with relative ease. I am doing everything I can to preserve that, because I do hang out in subreddits for chronic illness and hear how bad it can get. Stories of people unable to function at all and relatives telling them to try harder etc.

    I must say, the curse of chronic pain and illness has definitely been made easier by having a supportive partner/friends/family who either do or are trying really hard to understand. My empathy goes out to those without a strong support system.

  • At the doctor’s office… Again

    I am the absolute most tired. Literally exhausted and also mentally exhausted.

    A friend pointed me toward Ehlers Danlos as I have a lot of matching symptoms. Which is a close relative of fibromyalgia and POTS. And also histamine intolerance. Which also connects to long-covid as an activator, I guess.

    I am starting to feel like Charlie from It’s Always Sunny. Always connecting the dots between my symptoms and conditions, trying to find the optimal diet, medications, sleep pattern, etc. because I am ultimately tired of feeling like crap.

    It speaks for itself, yes?

    Just as I settle into a new normal, fibromyalgia somewhat managed and my thyroid meds doing their thing l, then suddenly skyhigh pulse the second I stand up. Dizziness, rashes, and my shoulder almost popping out of its socket during my sleep.

    But anyway, today’s doctor’s appointment was a quest for sleep meds. They were obtained so I will call it a success. Also found out I now have a family doctor. I’ve been frequenting the local walk in so much the guy knows me on sight. How’s your fibro? Blood pressure okay?

    It’s nice to have a team of doctors that care about my well being. That hasn’t always been the case. Quebec, looking at you. But there’s still a great deal of advocating for myself and piecing things together that’s required because all of my conditions intermingle and share symptoms. I essentially have to educate myself and do trial and error in cases to test theories.

    That’s actually how I stumbled on to the histamine intolerance. So far, the theory holds water. Gonna start some DAO supplements, which should help. Maybe? Hopefully??

    More on this and everything else later.