#also turns out chronic pain makes you tired. go figure. and it wasn’t a vitamin deficiency like my doctor guessed

[clickbeetle]

sorry for so much pt posting but i cannot believe i spent YEARS going to doctors being like “what’s wrong with me? why am i always congested? why do my shoulders burn? why am i always tired and in pain?” and they were like idk man. take some vitamins i guess.

and the first day i see a physical therapist they were immediately like “oh yeah here’s the root of your problems. do these things and they should go away.” it’s been two weeks and i feel better than i’ve ever felt in years.

[scowlowl]

Hi c: I remember a post, I think it was from you, about long covid and getting it? Was that you? A friend of mine is struggling and I was wondering if you had any advice about what she can do :< Thank you!!

Oh no, I hope your friend feels better soon! That might have been me, I think I posted about it here a few times and there have definitely been twitter threads.

Standard disclaimer stuff: I am not a doctor. What I found helped me might not help someone else. Long covid is kind of fucked up to deal with because it seems to hit everyone in different ways, in different areas, and months later something that wasn't a problem before can suddenly become one. The long haul groups talk about it as something that feels like it moves around the body, like a total shit gremlin.

The thing that helped me the most initially was joining the facebook groups with other people figuring shit out. This was back April/May for me but they're still very active and full of people sharing resources.

Survivor Corps is I think the big one and they've been the ones reaching out to media and doctors to try to gain some recognition with the medical community initially (as far as I know, all kind of a blur tbh). There's also a long covid group here, and if your friend searches for like, long covid + the country they're in there are usually more local/regional ones for resources closer to home too.

Because we don't really know what specific mechanism is triggering a lot of the long covid stuff yet, most of us are just treating symptoms. Some people have been diagnosed with mast cell activation syndrome (MCAS) and I don't know diddly squat about that but it might be something for your friend to look into. My whole thing has been inflammation and my immune system basically attacking itself because immune systems are both very complex and compellingly fucking stupid. Not to victim blame the immune system or anything.

What helped me depended on what was going wrong at the time, obv, but it means it's a long list.

This is just going to be a brain dump, sorry.

- I never had pneumonia. Mine started in my throat, probably damaged my vocal chords, but never turned into pneumonia. I still had shortness of breath, pressure in my chest, and my oxygen levels dropped. I could breathe but with great difficulty and described it to the EMTs as "breathing is like work." It took all of my energy and focus to breathe in enough. If you are that this point, ever, like, literally fucking ever, call an ambulance.

- Tylenol for a fever. 

- Blood thinners if necessary, I never had any but we know now that a lot of problems are blood clot-related. Tbqh my blood is more thin now than anything but I always had anemia and some sort of “your blood is too small actually?” problem and we don’t know why. I just bleed a lot and bruise easier now. 

- If they try to tell you it's anxiety or in your head or you're not that bed, tell them to go fuck themselves and go to the hospital. Get tested if you can. A lot of the problems long haulers ran into was that we got sick before tests were available, or we were talked into staying home by the emergency workers, and we never got tested. This opens the doors for doctors to tell you it's all in your head, psychological, anxiety, allergies, etc. Just. Go when you first feel sick if at all possible. Get tested before it turns into long covid. 

- I was not sure in the beginning what "shortness of breath" or "pressure" actually felt like, and it made me delay calling for an ambulance for a few days as well. For me, it felt like there was an elastic band of pressure around my lungs. I couldn't fully inhale. My diaphragm was fucked in ways I still don't understand. My lungs also felt heavy, like there was a weight on them or like my lungs themselves were too stiff to inhale. That all counts as pressure/tightness/shortness of breath. So does air hunger, or feeling like you want to be swallowing air.

- I know I'm being super obvious but seriously shortly before I got sicker, I hit up twitter to ask what "pressure" was supposed to feel like because I couldn't tell if what I had "counted."

- Breathing: lying on my stomach with my chest propped up by pillow, in bed helped. So did  pursed lip breathing: here.

- I was prescribed salbutamol initially, which did help with the worst of the wheezing and opened up some of my lungs so I could breathe easier. When I went to the ER again a couple months later, they gave me like 5x the usual dose and sent me home.

- I'm also taking Flovent/fluticasone twice a day for asthma maintenance.

- Histamines are a problem for a lot of people. Some develop a histamine intolerance, which can be helped by eating a low histamine diet.

- Antihistamines helped me the most. I was taking Allegra-D daily. Pepcid AC also helps, because it targets a different kind of histamine. There was such a run on Pepcid when this started that it was actually impossible to find in my area and I had to order some online. 

- I was recently prescribed Singulair and it has been life-changing this past week or so. As far as I know it's not really an antihistamine but blocks/inhibits a particular receptor involved in inflammation that comes into play when allergies do.

- Electrolytes. I don't know why, but my electrolytes are permanently fucked and too low now. If I don't go through like a litre of gatorade a day (or whatever, pick your brand of supplements), I am even more tired and brain foggy than usual. Helps a lot.

- Inflammation is a major problem all around. Sometimes I go for the naproxen or advil and it will help any really major acute flare-up now (like, I can feel when my gallbladder is getting inflamed and about to spasm and I can cut it off sort of), but mostly it's also daily maintenance. I take cucurmin and black pepper daily.

- Other supplements: vitamins A & D, a multivitamin, NAC.  

- CBD oil. This worked wonders for me for a lot of the side-effects of covid, costochondritis and shingles pain especially.

- Diet. I mentioned the low histamine one above. Other people have had some success with a low inflammation diet. Some folks also have so many GI problems that they basically ate chicken and rice and slowly reintroduced foods to see what would trigger something. I appear to get super fucked by nightshades now, e.g. Alcohol is an absolute no. I had to cut caffeine for months because of my heart. (No caffeine/alcohol/red meat was my doctor's first and best advice for heart stuff at the time.)

- Speaking of the heart stuff, if your friend is dealing with that: electrolytes again. I have pedialyte freezies that I would suck on whenever heart palpitations started and it helped calm it down some. My heart was so, so fucked for months that whenever I ate or stood up or sat down it would hit like 140bpm and I had to spend an hour moving as little as possible or I'd just about pass out. There are a LOT of long-haulers now dealing with POTS and I can't really speak to what helps that in particular but if your heart is messing up at all: call a doctor. I still don't know how damaged my heart is from all of this because doctors and wait lists, etc. Get a jump on that.

- Insomnia was absolutely the worst I’ve ever had and I’ve had lifelong, “I’m awake for three days wee” insomnia. The Singulair knocks me right out at night, so that's a bonus, but there has not been a single night since getting sick where I didn't have to take something to help me sleep. I was on Zopiclone before getting sick, at least, but seriously talk to someone about insomnia if necessary. The sleep deprivation alone was making so many things worse.

- Brain fog? Brain fog. I don't have any or many answers for this. My short-term memory is wrecked and usually I'll remember something 2 weeks later, so I live my life on a 2-week lag now.

- Related to brain fog, fatigue. Don't fuck with it. Do not. Chronic Fatigue and Myalgic encephalomyelitis are both brought up often with long covid. I am dealing with it but don't know what to say about it yet because I haven't had a single doctor give a shit thus far. I've spoken to a relative who's an occupational therapist about it and her most helpful advice was about "energy envelopes," which is basically spoon theory. If you feel tired: stop. If you don't, or if you try to push through, we relapse hard and fast and you can pay for one day of walking 10 minutes too long with weeks of being stuck in bed. It's miserable. It will take longer to get back to normal. Some of us can exercise and feel amazing after; others are exercise intolerant and it wrecks them. (I feel best after like, 10 minutes of walking and sunshine right now, which is after months and months of being bedridden.)

- Treat mental exertion the same as physical. Doctors told me to drink Gatorade after mental work because it's still work, and it has helped a lot for whatever reason. It also helps to work on one thing at a time, take a break, switch gears, take a break, etc. I can't multitask anymore anyway.

- Eliminate whatever stressors you can. Stress will make everything worse. 

- It comes and goes. Every relapse was a bit shorter and a bit easier for me, so that now when I fuck up it's like 2-3 days instead of weeks, but it's a rollercoaster.

- It can be random as hell. For about two months my gallbladder just decided to up and die, basically, and we were talking about having it removed. And then it was fine. Hasn't bugged me again lately. I know I said it's symptom management, but it's also like... symptom chasing and trying to figure out what's happening every time the sun rises. This is also exhausting. Everything is exhausting.

- Brain shit. Some of us have serious trouble reading. Sentences swim together. Letters wouldn't turn into words. I took this as a Challenge and started reading children's books and then Animorphs again, like... slowly, as much as I could do without pushing it, and it's still not perfect or great but it was an okay place to start. Honestly the hardest part was the embarrassment and going from a PhD program to reading kids books, but. Do what you have to. Do what you can.

- Sticky notes and labelling things around the house so I could see them when I needed them. I am not fucking around when I say brain fog. I can open the fridge, know I have milk, know it is in the door, and literally not see it to find it. I will put the cream in the dishwasher. I will spin in circles in the kitchen remembering and forgetting and remembering why I’m there again. Sticky notes. Also: journals, index cards, write literally everything down if you need to remember something. Put it somewhere obvious. I like writing on the bathroom mirror for the important shit. (Don’t use lipstick.) 

- Unsurprisingly, a lot of us are struggling with anxiety and depression. Don't let doctors get it backward: it's not anxiety making us sick, it's being sick and ignored and fighting to be helped that's making our mental health worse. So many doctors tell us it's all in our head. I did not move across the country because I was too sick to take care of myself because of ~allergies~ or ~anxiety.~ Fuck off.

- So, so many people report that they relapse whenever they menstruate so if your friend is in that group, they might want to prepare to feel like fucking trash every 4 weeks no matter what they do. I don’t have any advice on this one, I’m sorry. There are a lot of people discussing it in the FB groups, though, and those are searchable for symptoms. 

- So... a tl;dr list of things that might help: anti-inflammatory diets, anti-histamine diets, pepcid AC, allegra or other allergy meds, vitamin A/D/E, multivitamins, electrolytes and gatorade, albuterol, fluticasone, zopiclone (or anything that helps with sleep), CBD oil, singulair, anti-nausea meds (buscopan), muscle relaxants (spasming gallbladder). Rest, so much rest, do not fuck with The Rest if you can help it. I also encourage just getting high and edibles as much as you can because it sure helped me chill out big time and I think was a big factor in my recovery, at least as far as helping me calm down and helping my heart were concerned.

- The actual most helpful part outside of what to take or do was other people. Friends would go out and get me things when I could not, including like, cat food deliveries and all. I had co-workers ready to step in to take over my work on days I could not. I had friends calling doctors because I was too tired to fight them or self-advocate. I don't think it's an exaggeration to say they helped save my idiot life this year. Literally. It's a lot to ask of anyone but it's also that level of support that some of us need, and there shouldn't be any shame in it. (I still feel bad about it anyway but what are you gonna do.)

Depending on where you live, some places are setting up long-haul covid clinics to help people. Reports are mixed: some demand you had a positive test even if you were sick before tests were available. Some people are getting a lot of help regardless. Some are being sent home and told not to come back anyway. It’s kind of a gamble right now but either way, there’s at least some medical recognition making headway now so my fingers are crossed.

Anyway you basically sound like a good bean and your friend is lucky to have you asking around. I have absolutely forgotten something at some point in here because, well, brain fog and no memory, but if you have any questions or want something clarified please just ask. Stay safe!

[ackerbooty]

Note: If you make it to the end, know this post turned out much longer than I anticipated. And god forgive me saying and switching between opiate and opioid all over, my head is so scattered and I ... yeah.

I'm terrified.

Maybe in a way that is different from most--but it has to do with my meds. I was in a car accident when I was 17 years old, it'll be 10 years next September and I sustained a multitude of injuries:

Head injury

Glass/trauma under left eye that has led to my vision worsening in left eye

Fractured collarbone

Fractured first rib

Pnemothorax (collapsed lung) that now affects my breathing/problems with scar site

Hypersensitivity that circles around left breast and ribs

Herniated disc - back surgery in 2011 where there is now a scar with massive scar tissue

Fractured sacrum (My ass. I broke my ass.)

Fractured pelvis in 5 places

Severe damage to the sciatic nerve

All of these fractures and injuries were sustained to my left side, and continue to give me problems to this day. It was nothing I, or my family, thought and was told would be long lasting or "permanent". The orthopedic doctor, while I was still in my wheelchair and unable to walk told me I DID NEED PHYSICAL THERAPY (he was a fuckin' idiot, but that's an entirely different story that ends with me giving my mom and look and mouthing "I want it" and her nodding and saying "duh".). I was 17. I didn't know to ask questions. I didn't know what questions to ask. My herniated disc pressed on my sciatic nerve and was said to be the cause of my chronic nerve pain and that surgery would be the best route to seeing about a solution. My neurologist made me wait over a year after meeting him because I was so young and should easily gounce back and he wanted me to try more PT and go through tests. He also first wanted me to see a psychiatrist because all of this pain could be a coping mechanism.

For so long I thought I was making it up. I had no idea of what I was feeling, when my left foot would feel like it was actually catching fire when I put pressure on the heel of my foot in bed, how my last three toes on my foot were sensitive and couldn't stay warm.

Money. Money. More money. Surgery. I wake up. My settlement money gone from just trying to figure out why I was hurting when I was told I wouldn't. What was this burning sensation? Why couldn't I live without pain medication? Why was I having to tell my mother that I wasn't addicted to the pills and that I needed them.

Diagnosed: Depression/PTSD

Chronic and constant migraines

Fibromyalgia (how many times am I going to see an eye roll from people who actually do not believe I this?)

Is my story important? I'm unsure. But because of the opioid epidemic declared at the beginning of January, and even before then, I've slowly seen access to the medications I need--yes, considered controlled substances--become more difficult and harder to get. I have been lucky, but only because my pain and injuries are more than well documented and because I've plundered more than 50k into medical bills trying to fix it for documentation to exist. I've also been seeing the same doctor since my accident. This doesn't take away from the fact that I am a 25 year old depend on opiates to help my REAL and CHRONIC and CRIPPLING nerve pain/body pain/migraines/etc. I admit to being lucky in so far as you can define the word to my situation. There are those I know who are being ripped off their medications all around me--one, diagnosed for years with depression and with bipolar disorder was taken off a regime of medication that worked for him and had been a solid, study foundation he trusted and was put on a vitamin instead. Another woman had been on the same C2 classified medication for almost 30 years and was taken off of it without any warning, and was sent to a pain management clinic without any help for detoxification and given a prescription for Naproxen.

I am on Medicaid. While working to get my Bachelors degree, I could not work and this is how I've had to support my medical bills. I am grateful, so very grateful for the help this provided me in getting the medical care I cannot afford, but it is also difficult to have medication approved for use. If a dosage is deemed too high or because of the brand, or because of what it is--an opiate medication--I am to try another first.

I haven't had anything taken from me. Not yet.

So why am I scared?

This was the first time, after being prescribed a new medication by my doctor that we were both enthusiastic about helping my quality of life, the insurance company faxed my doctor a form of six other medications I had to try before I could try what my doctor had given me. This could easily be an experience of someone else's, but before my doctor could tell them simply, "No, she has been on this before. She has developed a tolerance/it did not work./etc. and I could usually get what I needed. Like Movantik. TMI or just a lesson for you, because we all have biological functions that are kind of icky, but those of us who are dependent on opioid medication to just survive a damn day without a little bit of pain have a hard freakin' time pooping. Movantik is a medication specifically targeted at opiate induced constipation and while it can be hard on your stomach, it is a god send for me when I'm having a difficult time using the toilet. There are a few kinks, so to say with it, but I cried when I saw there was something like this finally on the market. My insurance tried to basically give me a prescription for Miralax. I have these two big ass--I'm unsure if that's a pun intended to make some of you guys still with me have a good giggle--bottles of Miralax powder that ... mm ...

I've been on medication since I was still considered a teenager. For me, at least, this treatment is not helpful on its own. It makes me cramp and is painful because it does not do enough of what it is supposed to do--as in, it does not bring enough moisture back into my stool so I can easily go to the bathroom.

So I'm scared.

I'm finally back home.

After seven years I have finally graduated. So I'm closer to my doctor's office and we can finally get me onto a medication that better suits my needs than what I'd been given.

I'm put on Embeda. With is a medication that is "higher tech" and "tamper proof". It's an extended release medication that is Morphine Sulfate with 1.2 mg naltrexone hydrochloride. I am currently on a 30 mg dose. I've been on Morphine Sulfate before that was described as a more dangerous medication and one that is considered easier to abuse than this one here. I can't be put on Morphine Sulfate because once my body decides to become dependent on a medication, it sure doesn't like being put back on it in any shape or form.

I was so happy to be put on my intended medication before given this, but I was still hopeful. It's difficult to find something that works and I have a cautious doctor--which I'm not complaining about, thank god--who starts me out on a lower dose so we see how I react. We usually always have to go up. It's all in all, what one could typically chalk up to as a long day. Tiresome. But necessary. Something I'm willing to go through because this is the only thing that has been able to give me any sort of quality of life. I combine it with exercise, acupuncture treatments, and constant chiropractic care (the last two of which are not covered by Medicaid).

But why am I scared? Why have I taken up this much room on your dash? Because it isn't working.

I know I'm not a doctor. But I know my body. The difference between needing a higher dose and a different medication altogether hasn't failed me yet, and I could be wrong about this. Obviously, I could be. I want to be. Because my doctor wants me to try a higher dose before we switch me to another medication on this list.

I'm in so much pain right now because I cannot calm my sciatic nerve damage down right now. It's like my entire left leg and bottom is an inferno. My body is also hot. I'm afraid.

And I simply needed to tell somebody. I have no idea what this will do.

Nothing, most likely. I could get picked on for being a Medicaid recipient, given complete and utter shit for something perceived as wrong or inaccurate in what I have said. I am writing my personal experience. What I am currently going through. And I keep switching from opiate to opioid/s. Maybe someone will tell me I can get this right. Or that I'll be okay. Another could even help me. Or I could get this out to someone else and let them know that this is utter hell and sometimes ... sometimes the pain makes me want to go back and figure out a way around what happened.

Perhaps, I can reach someone else going through chronic pain. Someone seeing the repercussions of this "epidemic" that has been declared. Maybe I can be the one, if they got this far, to say I'm here. I feel like I'm dying, I am crying, and I wish someone would help me, but I will live. And I have a hand for you to hold.

God I just want some help. It's unbearable tonight. I never thought I'd post about this. Like I said, I don't propose to have knowledge. I'm speaking from a point in time that is filtering itself through pain.

I just wish to know ... is there someone like me? Getting that evil look when you step out the car and "take away" a handicapped spot from "someone who could really use it", terrified of the sort of pain and overwhelming sadness that comes from one moment in your life you had no control over (that I don't even remember), forgetting your pride to ask for gas to make it to even get the scripts that may not work for you in the first place. Laying in bed and writing in hopes of finding community. Tired. Hurting.

xx lyndz

[ppatibandla]

My Quarter Life Crisis

Told in a Series of Saved Snapchats

In about four days from now, I’m going to turn 26, which made me think that this might be a great time to reflect on year 25 of my life.

And well, also because I’m going through a post new year slump. You know, the point of time when you realize that you’re not sticking to any of your resolutions, you’re still recovering from the holiday season and struggling to get back into the daily grind, blah blah blah.

Since my creativity and productivity are at an all-time low, I figured that maybe if I just write and reflect, it might help get the juices flowing in my brain again. And I obviously had to tell my story in the most stereotypically millennial way possible - illustrated by a series of Snapchats that I’d saved over the year! :D

Sooo, back to 25 - the milestone number, the axis of our twenties, the pinnacle of our youth *eye roll*- was it everything I’d hoped it would be? Absolutely freakin not! Why? 

Well to start, I spent most of the first half of my 25th year, sick as a dog. I’m not sure what exactly happened but sometime in 2016, my immunity decided to go on a vacation.

Pretty sure I had brought it upon myself with my love for Indomie and Chunky Monkey (I’m sorry, mama!), but my body was suddenly no longer capable of fighting bad bugs on its own.

I was on antibiotics for various infections, eight different times in a span of fewer than six months. The amount and dosages I was prescribed caused absolute chaos in my body. 

Two months into my 25th year, after a particularly high antibiotics course, my stomach was pretty upset (common antibiotic side effect). I waited for the effects to fade away, but they never did. One week in, three weeks in, one month in, two months in…...my stomach was still chronically upset. When I say “upset”, you’re probably visualizing explosive diarrhea but it wasn’t that. I could literally not eat any food without my stomach bloating, having immobilizing cramps and feeling extreme pressure and fullness.

Now, all of these symptoms might not seem like a big deal, but imagine if this is your constant state of being where you’re always aware of the discomfort in your stomach. Imagine if the only time you feel relief is when you wake up in the morning because your stomach is empty then. Imagine if anything you put in your mouth is accompanied by the anticipation and fear of feeling like crap for the rest of the day. This was my life for months.

The doctors couldn’t figure out what was wrong with me, they said I probably had Irritable Bowel Syndrome (IBS). Now those who are familiar with IBS will also know that it is basically a medical pseudonym for “we don’t know what the hell is wrong with your stomach”. I didn’t even know what the problem was in order to look for a solution! So to fix myself, I had to turn to the last place I wanted to for help - the internet.

When you look up a sickness on the internet, it can actually be really helpful or it can fill you with a crippling fear and conviction that you’re going to die. But I had no choice because my doctor had sent me home with this very wonderful, completely unhelpful advice: 

“Well all your tests seem normal. Just wash your hands more and get more sleep so you don’t fall sick.”

*crickets*. This is what you went to med school for, lady? Thanks, much. >:-[

Also, everyone and their dog is a doctor on the internet. You have no clue who out there actually knows what they’re talking about and who is click-baiting you. 

Norma here would have made a much better doctor!

After trudging through hundreds of websites, I began my experimentation with the different remedies that Dr. Internet prescribed, in the hopes that it would give me some relief.

I tried three-day juice cleanses (juice only diet) and water fasts. This is supposed to help reset your stomach by giving it a break from digesting food. I received temporary relief but the moment I started eating again, my discomfort would return.

I avoided foods known to cause intolerance for months like gluten, dairy, soy, eggs, caffeine etc.

On a side note, I never realized how difficult life is when you have to actively check for and avoid ingredients like gluten, which wipes out more than half the options available to consume. My utmost respect for people who have to do this on a regular basis!

But that wasn’t helpful either because my condition was seemingly random, not caused (though exacerbated) by any particular kind of food.

I tried more antibiotics (look up Xifaxan, you need to sell a kidney to even afford this medication) and a ton of herbal drugs. Seriously, while my peers were out spending their money on vacation and parties, I was spending all of mine on expensive herbs and probiotics which promised results, but sadly never delivered. The herbal stuff was especially scary because it’s not regulated by the FDA - I was gambling with trying to fix my problem at the cost of causing new problems for my body.  

And of course, I also tried more obvious things like yoga, crying, praying and what not, all in a desperate attempt to fix myself. I was trying to go about my daily life and work with a semblance of normalcy but I felt anything but normal. 

There I was at 25, prime of my youth, unable to consume food, taking fistfuls of pills every night and avoiding eating any actual food, just so I didn’t have to deal with the discomfort. I lost a bunch of weight and the stress took the biggest toll on me, making my condition even worse. As if all of this was not bad enough, various members of my immediate family were having serious health issues as well which was further upsetting me.

Finally, sick of my constant visits, the doctor recommended that I get an Upper Endoscopy - a procedure where they shove a camera down your throat to look inside your stomach to make sure you don’t have cancer or a tumor.

$800 and the awful experience of having a minor surgery all alone later, the doctor came back and told me the same thing - my tests were normal! He suggested getting some other tests done too and kept talking, but as I laid there in bed in my shitty hospital gown and listened to him talk, I totally had a dramatic, bollywoodesque moment. I felt the doctor’s voice fade into the background as I made up my mind that I was fine. I covered all my grounds, did all the tests, tired all the remedies which yielded no results. I decided right then and there that I was going to be fine, even if I wasn’t.

And I swear to God, it felt like a switch had flipped and my body started getting better overnight. That night for dinner, I said “screw this shit” and bought myself pizza - I was eating gluten and dairy after months! I went back to eating everything like normal and ignoring the familiar discomfort I felt in my stomach.

Hell yeah, I post food Snapchats! Judge away!

And just like that in the following weeks, I started feeling so much better. Am I absolutely cured today? Is this going to be a miracle recovery story? Sadly, nope.

I still have pretty bad days when I’m doubled over with pain and I still take many probiotics and supplements every night. IBS is a chronic condition with no cure, it can only be managed. I know that it could be worse and that I should be grateful - I am grateful. But IBS has definitely affected the quality of my life and I will probably never be able to fully go back to how I was before. But I have learned to live with it and it’s just another part of my life now.

These were just some of the herbs, probiotics, supplements, vitamins and prescription meds I took (and still take) over the past year :/

So there you go, adulthood hit me like a brick when I turned 25 by bringing on wonderful IBS and what’s more stereotypically a sign of age than GI issues?  I brought this upon myself because of self-imposed stress. The moment I consciously stopped thinking about it, I gave my body the opportunity to restore itself, at least to a capacity where I was able to go about my daily life with relative ease.

None of the stress I was dealing with was particularly special, it’s stuff we all deal with - career, visa, money, family, friends, romance etc etc. But I let it get to me and it nearly destroyed the one thing that I actually can’t fix if broken - my health.

In addition to being chronic, IBS is also pretty common and affects many people in different forms. I am hoping that my overshare story is relatable to those who suffer from it and for those who don’t, please chill out and don’t mess yourself up over things that don’t really matter like I did. Pretty basic life lesson which we all know but conveniently ignore.

But year 25 was still pretty awesome - I made great new friends (and lost some) and got my H1B visa finally after 3.5 years. IBS definitely did not hold me back from going on many many many adventures. 

A Snapchat montage of all my adventures from year 25.

While I’m super excited for 26, I do feel the twinge of regret because like most people my age, I’m nowhere near what I thought I would be by now. But a big part of growing up is realizing that the world sucks, it’s not fair, there’re always going to be men with bad hair and no intelligence (read Trump) trying to control you and there ain’t nothing you can do about it. It’s all about accepting that success is defined differently for everyone, that you can’t change everything and being okay with that. It took me a totally avoidable physical and mental crisis to realize that. Here’s me hoping that your journey to self actualization is smoother!

P.S Before you click through and start reading my older blog posts, please note that everything before this was from when I was younger, dumber and not nearly as woke. 

[nookishposts]

Ponderables

Heads up. This is not a tale of woe, nor a pity party, but a collective of observations, mulled and spiced recently in the cauldron of my own head. If you care not for navel-gazing, you are welcome to stop reading here, no harm, no foul.

2018 has brought it’s challenges for myself and our household . Nothing horrible, in fact far from it, but if you think of water dripping slowly over time against a surface, it can eventually make itself a space and given enough time, put a hole in solid rock. Watching and/or anticipating each drop can be downright maddening. But in the end, the landscape, internal and external, changes. I have felt unwell in body and spirit for a good part of this year, assuming that stress and misplaced-expectations had a lot to do with that. Turns out there’s more to it, and no I do not have some horrible, terminal illness. Too many of our contemporaries have endured or are enduring way more than I could possibly imagine, but I have only my own stuff as a frame of reference, so that’s is the one thing I can authentically speak to.

My Beloved and I have a dream-in-progress that involves a small home on a bit of land, to live sustainably within simple means. We’ve long been working steadily toward it and believed that 2018 would bring it to fruition, but it looks like we will be waiting a little longer and we’ve recently made the choice to be consciously okay with that. Back in January, we thought we had found our place. I had just been unexpectedly fired through company re-structuring, so moving us forward became my full-time job and a welcome recovery distraction. We readied our house for sale and made plans.I even closed my part-time massage practice after 22 years. At the 11th hour, our buyers backed out, and we lost the northern property we’d been looking at. We took our For Sale sign down, explained to the people who’d already arranged farewell send-offs, and we started looking again. I found some tidy employment that was physical and low-stress and paid decently: until I got injured through no fault of the people I was employed by, but by one of their contractors. I could not continue the job I’d enjoyed. Through the kindness of friends who own a business, I found employment I could learn from and they generously took me on. I am a hard worker and pretty mindful, but my insides began to act up in ways I wasn’t used to and my sick time began to pile up. We’d found another house to purchase and put our own back on the market by this point, but things just weren’t progressing and I also was surprised to find myself in residual chronic pain...a first for me since I have always been strong of body. Discovering the joys of a great osteopath took care of the physical pain beautifully but I still wasn’t feeling quite myself. My own Doc of 30 years was away for a while dealing with cancer of her own, and I didn’t really care to start fresh with someone who didn’t know me, so I plodded along. Once again, we had a buyer who after hard negotiations that saw us drop considerably in asking price, backed out at the very last minute. And a second time, we lost the property we’d pinned our hopes on to someone else. I took it all quite personally even though in the end, it really was just business. 

We both had been so ready to move on. We live in a fantastic neighbourhood, but our home is smaller than most, just 2 bedrooms, and even though quite a few buyers returned for second and third viewings, they could not see a way to make it bigger without building an addition. Too small for a student rental or a growing family, and too old for a single professional first-time buyer. Fair enough. The feeling of coming to a complete stall, not once but twice left us rather baffled about what the Universe might have up it’s sleeve, and we still don’t know. We’re trying to be patient, and keep perspective. But it has been a very long and exhausting process. It got to the point where no matter what I did I was not sleeping more than 2 hours a night, and was therefore cranky, impatient, sloppy, and not thinking at all clearly. Missing so much work didn’t help my sense of groundless-ness. I felt lost and completely ineffective. I consciously withdrew from friends and social situations, knowing I was not good company. My Beloved suffered in her own quieter way and we reassured one another, hand in hand, no matter what. But keeping the house tidy and having strangers wandering through several times a week for months on end is daunting on it’s own. Property-hunting at a distance is also tiring and frustrating. We KNOW how incredibly fortunate and privileged we are in the greater scheme of things, but this breath-holding was how we were spending our year, while still trying to be supportive of others in our lives who were hurting in other ways. Sometimes all you can really do is bear witness and stand by in case you are needed. We did our best.

So....finally I got to see my own Doc a week ago ( she is doing extremely well now thank heavens) and we ran the gamut of basic tests. I asked to be referred to a good nutritionist as well. Every time a new set of results came in, Doc would text me the lab page with a comment; “Your Vitamin D is in the toilet, start 2000 I.U. daily. Today!”  Then; “ You haven’t been keeping up your iron...get back at it please. Your liver isn’t happy.” Turns out, both iron and Vitamin D are critical for good sleep and lowering stress. Aha! Something I could actually control. I have also used a CPAP for years and it turns out my mask was leaking, so a new mask helped.  Three simple fixes. I am up to 4 hours of sleep a night already, expecting to improve.

 Then came her latest text: “I’m sorry to tell you, but you are now officially diabetic. Re-jig your diet , look at your exercise,and we will repeat the blood-work in 3 months. Call me if you need to.”  I saw on the lab report exactly what she was talking about. I come from two families riddled with diabetics, so it wasn’t a huge shock. But,it also turns out that the biggest contributors to tipping into the diabetic zone are long term insomnia and long term stress. Well, now. I could hear the puzzle pieces landing with a resounding thud. The very good news, is that we caught it early enough that I have an excellent chance to successfully manage and possibly even reverse it if I take action now. Which I am doing. No meds required. My glucometer goes everywhere with me and I am quickly learning a whole new normal, but small things like getting up 45 minutes early to shovel heavy wet snow this morning can skew my numbers and insulin requirements enough to bring me home early from work today feeling like crap. I’m learning some stuff the hard way, but I’m learning.

What’s my point? Well, I guess it’s just this:

Life is so precious and we North-of-55-ers have some reckoning to do if we are to stick around for good long innings. Some smartypants-ers among us saw this coming and got to the gym and cleaned the crap out of their cupboards in preparation. Some of us bolstered our souls with a return to church or have taken up a spiritual practice involving  simultaneous honouring of the physical body. But I have discovered that about 40% of my contemporaries have in the last couple of years had to learn to cope with chronic health issues that  crept up insidiously while we were all still pretending we were 35 and could get away with stuff. Instead we are discovering that if we aren’t minding the store, age-related illnesses sneak in and swipe the things we have taken for granted, leaving the shelves bare of valuables like energy, concentration, ease of movement, and overall well-being.

It’s been a stressful, draining, somewhat disappointing year. My overly-bountiful body, always strong and ready to dance, has become needy for overdue attention. My brain is tired of running on fumes and both my acuity and my interests have dulled. I kept pushing, emotionally and physically figuring it would all just pass if I tried a little harder...until it became so much harder to try. Cramming fuel-carbs in place of sleep made me sick. The warning lights on my dashboard were blinking and I chose to ignore them until the whole engine seized up. I am very lucky that I get a chance to fix it. But what if it had been something much more serious that I couldn’t fix?  Iron, Vitamin D, and an ageing pancreas can bring a list of unwelcome relatives to the door, standing impatiently on the porch waiting for a chance to invade and put down roots. Depression, anxiety, bone, organ, and tissue damage. I will never be immune to cancer or MS or a host of other possibilities, but I can do those things that remain within my control and that I should have been mindful of long before they smacked me right in the limping, insomniac,harder-to -employ-each-year visceral guts. Bi-focals don’t help with hindsight, but should have reminded me to have some extra foresight.

This ain’t no pity-party, table for one. Nor is there any point in self-flagellation. But 40% is significant, and I have slipped so quietly over that line to join the ranks of those with age-related chronic disease.I intend to climb back over the wall, and I will, but I waited too long to ask for help, and explained the warning signs away rather than getting them checked out. We all know better. It’s reminding ourselves to DO better that becomes ever more critical. And it really is never too late to start. I am replacing arrogance with gratitude, and denial needs to become a personal river I can swim or paddle my canoe in for both the exercise and the joy of it. I am not Betty White on a football field and a Snickers bar isn’t going to be my saviour.(It was a Superbowl commercial, you can YouTube it). 

Please my friends and fristers and partners in all-sorts: check in with yourself and see if you are a quart low somewhere or need your tires rotated. If you are feeling “off” then there is probably a reason and most likely something you can do about it, particularly if you make it a priority.  We aren’t 35 anymore and we don’t have the same amount of bounce-back. Life can wear you down when you push hard without perspective. We aren’t raised to put ourselves first and it isn’t our comfort zone, so we have to make it one. There are bucket-list trips ahead, spontaneous dancing to grocery-store 1970s Musak, milestones to celebrate, and one another to nudge along the next untried section of road. It comes with speed bumps and potholes, but it’s still a journey well worth taking. Remember to pack some healthy snacks and build in time for naps. Drink lots of water, between the hard-earned glasses of good wine. We have at least 40 years left to fill with adventures, and to spout hard-earned wisdom to the upstarts, and to listen to one another’s stories. Some of us will have it harder than others and we need to keep ourselves tuned up for the times we are really needed. I sincerely apologise to those whose phone calls and texts I haven’t returned because I have been quietly avoiding reality and hoping to get my shit together. I will probably never completely group my poop, but I ain’t ready for diapers just yet either. Time goes much faster than we do now. Fitbit and fibre cookies, here I come!