While not much has been happening to note over here, there’s been alot of little victories that have amounted to alot.
And phew. I’m tired. But I feel so good about the progress.
With the change in business plan again, we decided to revamp our house. We’re simplifying as much as possible in order to make life easier for me which, in turn, makes things easier for my husband, and it has made a tremendous difference in our lives so far.
I used to do everything. Why not? Why would I hire someone for something I could easily do myself? But that hasn’t been the case. Before, I’d fall behind because I kept myself too busy. Now, however, I fall behind because I’m just too tired to get everything done. And we’ve finally given in to minimizing the things we have to do in order to have a more fulfilling life.
People ask me how I’m able to keep my house so clean if I suffer so much. AKA, they doubt. They question. They see what I’m able to do, but not at what expense. Judgement runs thick, and it has made my so hyper aware of the thing I did myself, and could never fully understand it.
Ah, karma. You caught up with me.
If you’re a crafter, you know how easy it can be for craft supplies to get out of control, and unorganized. Or, if you know a crafter, you’ve likely seen it. That room hidden from the rest of the house that you never get to really see, because there’s a real life and death risk of never being seen again.
The struggle is real.
I have many hobbies, and they have over flowed into all boxes, bins and corners where I can put crafting supplies. I’ve recently rid myself of MANY of the unfinished projects I’ll never have time to get to, and still have a room full of unsorted boxes of beads, jewelry findings, wire, ribbon and so much more. And I just brought home a whole lot more.
I am excited, however, to finally get to these things. To finally get to the unopened bag of pendants that have only been neglected because I couldn’t find them when I needed them. To get everything together and organized in a way that I can easily access those items needed for the project I need them for. And if feels. So. Good. I don’t think my office has ever looked tidier.
This sort of organization has been implemented throughout the house. We have had an overflow of books that started to pile up on the floor of my husband’s office because we ran out of bookshelf space, and furniture has been moved and repurposed to make room for those things we need them to do. But to organize, everything typically turns upside down before any kind of semblance of sanity can be found in it, and that’s where we’ve been buried – underneath the shit we’re finally getting together.
Between this household upheaval and meal planning and self care and critter care – my days are full, and they are meaningful. I hum and chant mantras while plugging along, listen to audiobooks throughout the day, shimmy-shake to my favorite music, and when I’m too tired to keep going I nap, or watch a show or play video games.
That’s right. I’ve learned to break. And even have fun.
There’s been a lot of guilt to deal with, and I think I’ve finally broken away from most of it. Not entirely, mind you. It nags now and again, but I notice it and chase it away with a broom.
Guilt doesn’t belong here.
And this is the biggest project that’s been underway. Breaking through limiting beliefs and barriers that threaten my happiness. While my physical body is still not right, mentally I’ve had many more good days, and very few bad. If someone judges, I don’t take it personally.
My personal challenges I presented myself for self improvement have went a little to the wayside, but not far. While they haven’t been a sole focus, I’ve been finding myself working on them subconsciously, which is so awesome because it means I’m doing the thing!
EYE MASK – I had fallen out of the habit of applying this, but it’s been a regular part of my day again. Every morning, every night. Unfortunately, the chalazion has actually grown to the point of constant irritation, and while I’m continuing the eye treatments in hopes that it DOES improve, first, I’ve been referred to an ophthalmologist to get it lanced. We’ll see how long that takes, and which treatment ends up winning out.
DRINK MORE WATER – also a success! I’ve been getting my 3 litres in every day, which has helped everything else improve just that littlebit to make a difference.
YOGA – not so much success here, but that’s not intentionally. While my head MRI came back normal, I’ve brought up the possibility of a CSF leak with my internist, because the symptoms fit SO WELL. He admitted to not knowing much about it and is reading up on it, but in case it IS a CSF leak, I’ve opted out of as asana practice for the time being, since the poses can encourage more leakage. Instead, I’ve been slowly increasing my activity levels where possible (which, in cold weather, is easier said than done. But – not impossible.)
SELF MASSAGE – this is technically next week’s focus, however, I am picking this up a little more each week. It’s not daily, yet, but it’s happening more often again, at least.
So, what’s next? I’d say that I’ve been fairly successful with my goals thus far. There’s some room for improvement, though. My next list should last me until the end of February.
STRENGTHENING EXERCISES – My muscle mass has deteriorated so badly, and this is especially prevalent in my hips and knees. They ache so much again, and my knee is showing instability again. It’s time to work on building that up again. Thankfully, this one isn’t new to me, and I’ve found my physio exercises from the last couple of years that are specifically for my hips. Back to square one!
SELF MASSAGE – I can do better on this one, so I’m putting it back into rotation.
CRAFTING – It’s not unreasonable to bring at least one crafted item to completion in a week. Sometimes that might be a decal, or a bracelet, or a mala – but this is the kind of thing I thrive on, and I want to make it a focus.
READ DOG BOOKS – I spend way too much time on social media reading, and my eyes get tired by mid day and reading a book is harder. This needs to be swapped, so that my effort is spent more on the books to prepare myself for the puppy we’re getting, and less time on social media, which drives me bonkers anyways.
CALL PEOPLE – I am TERRIBLE at reaching out to others to talk to them. I just don’t do it, and people tend to call me, instead. I think this is a really good thing to change up, so that I’m actually the one to call someone else for once.
I have so many things I want to write about – Trump, accountability, Gillette, appropriation, MeToo….. but I don’t have the focus or energy, really. I sit down to start, and my mind goes completely it’s own way and nothing makes sense.
Maybe it just isn’t meant to be shared. And that’s ok, too. I have enough things to focus on with my own things.
I’ve been following The Mighty for a little while, because the posts ring SO true to home for me and the entries truly resonate with me.
Today I notice a challenge that was posted for 52 Small Things – a year long challenge to get into habits, which is something I’m sorely in need of. I even joined the community in order to take part with people I could likely connect with more.
Nope. Technology strikes again. I wrote the entry, hit “post”, assigned a user name to myself, aaaaand….. blank screen. Just white. Nothing there. No words, no submission, no nothing.
I tried to comment on the post – and same thing. The site kept telling me I was logged out, when I clearly wasn’t judging by my face in the top corner of the page. I gave up. Obviously there’s a glitch in the Matrix somewhere.
I was frustrated, but then realized there’s no reason to be. I have time to rewrite it. That’s all I have, really, is time. Sitting. Because today is a bad brain day, and I’m sitting and watching movies to avoid dizzy brain space from taking over again. Like it did first thing this morning, and nearly landed my ass on the floor.
So here I am, writing it again. But on my own blog, because I think it’s a good thing to take up. Without judgement or expectation, and no beating myself up for not sticking with it. I’m gonna try, and that’s the best I can really do.
They have goals to follow, but there are some that I really need to pick up for myself first. These aren’t New Year’s resolutions – they’re self care goals.
Week 1: EYE MASK I have a chalazion on my left eye that I’ve been treating with heat packs since my eye appointment in November. I was instructed to do this for 1-1.5 hours a day, and I was doing really well. For awhile. That habit dropped entirely for a couple of weeks, and I’ve been good about doing it daily again. But only twice a day. I need to get this thing dealt with, which means I need to take care of it more often. I makes my vision blurry for at least 15 minutes after each treatment, which takes away quite a bit of time from seeing. But there are many things I can do without proper vision. No more excuses. And who knows – maybe if it gets smaller it’ll help reduce my double vision. My care team doesn’t believe it’s the cause of it, but I’d like to think they might be wrong.
Week 2: DRINK. MORE. WATER. I’ve been waking up early and not ready to get out of bed. Three a.m. is not conducive to movement. But if I drink water, I need to pee, and I don’t want to have to get out of bed yet, but then I spend too much time laying there after and by the time I do get up I’m struggling with dizzy spells and it starts the day of horribly. It’s time to fix that.
Week 3: YOGA. I have too many bad excuses why I’m not practising more, and too many reasons that I should be doing it more. I have been practicing, but not as much as I’ve wanted to. I really need to drink more water to combat the dizzy spells before performing asanas, so I can sweep the animal fur up before placing my mat down. But by the time I get enough water in me it’s the afternoon, and I need food, and practicing with a full stomach is uncomfortable, and by the time I’m ready to practice I forget about it. Thankfully, I have a robo-vacuum on the way, which will take care of the sweeping issue, and if I can get my water drinking habit handled then I really have no good excuse to skip it.
Week 4: SELF MASSAGE It’s good to increase blood flow and and lymph flow, as well as moisturize my poor, dry, malnourished winterized skin. Without the threat of getting the hose if I don’t follow through. It’s a habit I’ve sorely fallen out of, and picking it back up has been a struggle. Once a week shouldn’t be hard to turn into once a day.
Today is a bad brain day but it’s not a bad day. My socks are mismatched, my eyes seem detached and I don’t have the energy to play
My marshmallow brain is stuffy and numb My face flies in butter, with a tickle and flutter and I think I just said something dumb.
Today is a bad brain day and I think I’m unsure I forgot what I’m doing, or maybe undoing I hope whatever this is has a cure.
My toes and fingers are cramping and sore And as if right on cue they start to turn blue And I’m ready to pass out on the floor.
Today is a bad brain day – and it’s so easy to tell When my words slip so easy and nothing is breezy I’m living my personal hell.
I take my lumps with a spoonful of salt with a smile and nod and stumbles and plods I’m living my life at a halt.
But everything is ok because it is just one day Tomorrow is better and I’ll be a go getter And then I’ll be able to say
That today is a good brain day and it’s a beautiful day Thank you for caring while I have been flaring And I’m ready to go out and play.
Yesterday we went out, and I knew it was going to be a long day. It started with a haircut. Simple, right?
Conversing with people – some I knew, some I didn’t – was tiring. It started the day off. The scents and sprays and hair product and blowdryer heat and temperature change were all a perfect storm to start off a flare.
It’s a good thing I was well rested before that.
By the time we got to the hospital for my MRI, I was in full flare. My face was tingly, the top of my head numb, and the back of my head freezing because I shaved it. (Worth it!) The elevators increased my dizzy spells, I felt like someone was sitting on my chest while trying to navigate that section of hospital we weren’t familiar, which was confusing. Nope, it’s not anxiety. It’s just one of the signs of a flare up. Good thing there were maps and I was being escorted by my very own wonderful, good looking security personel. (He’s not there to protect me from anyone except myself, really.)
Their waiting room with family members was cozy. But going into the back, stripping down to the knickers and wrapping in a sheet was a whole different matter. It wasn’t cozy. It wasn’t warm. In fact, it was like the third level of hell, except they let me keep my socks and boots as a reward for good behavior. I was thankful that I was wearing my shiny new fancy compression stockings for a little warmth, but the sheet did little to stop the icy breeze from flowing up my light, summery, extra-fashionable hospital gown.
I had already been struggling with the pressure changes and my joints were stiff and sore from the temperature drops at night, but by the time I was called into the room my body had stiffened up and it took me forever to stand up, and for once it wasn’t just the blackout and dizziness. I begged for a blanket – I was shaking so hard I don’t believe they could have possibly done a successful, clear scan if the room itself wasn’t any warmer that everywhere else in the corridor.
I was sooo happy when she offered several warm sheets, since there were no blankets left. It was instant relief, and I was able to relax with the strange space helmet in the teeny tiny holespace they put me into. I am so, so grateful I’m not claustrophobic. Quite the opposite, actually, and I find it somewhat cozy, until I nearly started laughing out loud. The sounds of the machine reminded me of Strongbad’s retro rave.
The MRI seemed really short. I’ve had two before this – one for my knee, which I barely remember, and one for my finger to assess an infection in the joint. I recall the one for my finger taking an extra long time – I kept falling asleep, and I tend to twitch as I’m falling asleep. Of course, my hands are the most affected by this, so the techs kept having to rescan. We tried changing the radio station they had me listening to, and turning it up. I ended up singing to keep myself asleep, much to everyone’s amusement.
Thankfully, there was no twitching this time, and the scan didn’t take long at all. It’s been a few years since my last scan, but things have changed since that one, and it seemed quick and easy. Until I stood up. I felt like I was in a dropping elevator, which tends to happen often, but it hadn’t been that bad that day until then. The tech apologized, and told me it was fairly normal for people to feel dizzy after getting a head MRI. Apparently, they mess with the alignment of the ions in the ear canals, which can cause some people some side effects.
The ringing in my ears has been louder, as well. Bother. Oh well. Just one more thing.
Afterwards, we met up with a long time friend of mine from high school, and we enjoyed smooshi and snuggles at a quiet sushi place on the south side. Until, that is, my flare up became a permanent fixture on my face and my head became numb and it was time to go.
Today was a train wreck and a half, though, as I pushed further than I knew was good and the dumbs took over my brainspace. My husband went to his training class and had to work on his truck after, so I had the day to myself. It took way too long to be able to get out of bed, to remember to eat, many circles in the kitchen every time I forgot what I was doing, and nearly forgot to feed the cat entirely, even though I had his food dish in my hand. Empty. Because I forgot to fill it with his gooshy food. And then I came back upstairs to fill it, forget (again) what I was doing and went to make my own lunch, and dumped the can of salmon for myself into his food bowl instead.
Sigh. He had a treat, and we shared the canned salmon.
I’ve had a few moments of surmounting frustration, but all-in-all, I remembered to just breathe, to take it easy, and remembered that tomorrow will be better. And I’ll rest more so I can go out on Christmas with something resembling normalcy for a little while, after which we have nothing lined up again for awhile and I can recover from appointments and visiting until the next round. And who knows…. maybe I can get some fun projects done. My creativity has been itching again, and I’ve been playing around with a few things here and there. Nothing major, but enough to take the edge off of feeling useless. It’s nice to be able to make things without expectation or deadlines, so I’ve been enjoying doing the things I’m able.
And now…. more waiting. With the holidays here, the results may take a little longer than usual. If there’s something that comes up, my internist will call me in. And if not, I see him next month and he’ll run a Lyme disease series and send me off to a Rheumatologist, and hopefully we’ll be closer to getting a few answers.
Fingers, toes, ears and all of the things are crossed.
I miss my brain. I hope I can have it back to normal, one day.
There was rocks and rain being thrown inside the truck yesterday. I couldn’t stop feeling wet and getting lumps stuck in my throat.
I’ve had some rough days. I’ve had friends tell me that they don’t believe my symptoms are real. I’ve had many change the subject immediately after asking how I’m doing. I’ve had some people straight up ignore me when I’ve asked them directly for something small (simply sharing a post – nothing more). I’ve had people talk condescendingly me towards me for not wanting to try a remedy without discussing it with my physician first, telling me I was giving up or not willing to get better by trying different things. It wasn’t that I wasn’t willing, but I wanted to ensure there was no (or limited) risk that my doctor might have known about before trying it. If he felt there was no harm in trying, then I’m all for it. I’ve had people mute me on social media because they’ve said they just don’t care.
Some of those things I can chalk up to not being about me. Some of those things are limiting factors on the other person’s end, or awkwardness towards the situation, or just not knowing what to do or say. Those are things I understand, and I have no problems with.
But some of the other comments, actions and inactions hurt, and they were difficult not to take personally. I managed it, eventually, but that initial reaction felt like an icy cold slap to the face, and it stung when it came from a small handful of people I have known for a long time and I thought cared. That they didn’t is actually ok – they have things of their own to worry about, and they have their own agendas. Me expecting them to look out for me is my problem, not their’s, and I don’t typically expect things from others. I was (and still am) feeling extra vulnerable, and was grasping onto things that weren’t mine to hold onto. (I’ve let those things go. I was feisty, nervous, sad and didn’t fully have awareness of my overabundant emotions at the time. I’m human.)
But then, everything changed. And those small handful of people who I had allowed to drive me deeper into a downward spiral are suddenly muted by the huge outpouring of love and support from so many others, and from some people I don’t even know.
Seriously, universe, you have some amazing people in you. And as much as I often question the direction of humanity, this lesson has taught me that there is more kindness than there isn’t. There’s been tears and feels, but they’ve been good (if not complicated) ones.
It’s been weird for both my husband and I. Admitting to needing help is hard enough. Especially publicly. Taking help is a whole other matter. As mentioned previously, I’m one to give things away. I love it. So when people have been buying product, I’ve been wanting to give them gifts with their order, as I always do. Jess, the superhero who has taken over selling my products, has slapped my wrist numerous times for that. I gave her complete control over all of the inventory, selling, discounts and everything associated. And she’s been rocking it, without the discounts. She’s selling things better than I ever did.
We’ve both shared that we’re better at selling other people’s products than our own. At markets, I’d sell my neighbours products easier than mine. It was fun, and they were appreciative. They’d be quiet about their product, and strike up conversation a little, but wouldn’t want to be pushy with sales and allow the customer to browse. I’d pop my head over, grab my favorite product from the table (which would change with different customers) and start asking them questions about it, and commenting on the things I loved most about it. I was also sincere about it, which I truly believe made the difference.
Most of the time the customer would buy one of whatever I was oohing and aahing over.
I excel at retail sales when I have fun with them. At the sports store I used to work at, I’d focus on the customers in front of me, and not focusing on making specific sales. I worked the quietest shifts, but always had the highest sales, because they were my focus, no matter what they were looking at. My specialties were the people on a budget – because I could relate the best with them. It was amazing how much some of the other associates took advantage of people, and it never impressed me. We got commission at the time. I’m glad that practice has been ended since I worked there. The managers loved those associates for selling the high ticket items, but then they didn’t have the highest average sales.
I remember one elderly gentleman had come in to pick up his shoes he had on hold, and I couldn’t help but pry. He was there to purchase the newest, greatest Nike Shox, which retailed for the great deal of $299 at the time. The associate that had helped him previously convinced this man that these shoes would help his knees stop hurting while he was in the garden. The man was on disability and in pain, and he was desperate for relief.
They were basketball shoes, meant for a basketball court, with crevices in the soles where dirt could pack into and compound, rendering the “shox” useless once dirt got embedded in there. He obviously had crippling arthritis in his hands, and the work to clean the shoes in order to keep the dirt out from those areas would add to the list of things he shouldn’t have had to do.
I downsold him to a reliable, comfortable, supportive pair of $60 New Balance shoes, and gave the associate the sale for those.
Oh dear, did I ever cause a kerfuffle. The other associate complained to management, who had to reprimand me for stealing a sale even though I didn’t take it myself. The associate was also reprimanded for the unethical sale.
I didn’t make friends there. Apparently ethics doesn’t belong in retail sales, and I’ve always tried to live up to a strong code of ethics for the benefit of others. I could not in good conscious let that man pay for those shoes without feeling guilt, and to this day I do not regret my decision to downsell him those shoes. He came back to see me personally and thank me, as the shoes actually did help reduce his pain while in the garden. This was the kind of thing I worked for.
I had the lowest amount per sale, however the highest total monthly sales for my department, because there were customers that refused to see other people due to my honesty. They simply wouldn’t deal with the other associates in my department, and would ask for me specifically. The managers had to deal with fires often from disagreements on fairness. No one could control who the customers wanted to buy from, however, and there was nothing that could be done about it. I was always on time, I didn’t steal sales from other associates, I found associates to pass customers to in other departments and I treated everyone fairly. I was isolated from the others, but it wasn’t a big deal to me. I was there to work, not to make friends, which wasn’t the same attitude that many others had. I didn’t mind.
When it came to my own products, however, I was no different than those other quiet handmade vendors. I’d converse, talk and answer questions, but didn’t want to come across as over zealous, so didn’t push sales. And I’ve never done so poorly selling products as I did my own.
That’s not to say I did poorly, mind you – but I didn’t have the same exuberance about it as I did selling other people’s products.
It was never for lack of confidence in my products – while sure, I’ve made a few mistakes and bumbles (seriously, what company doesn’t), I’ve always loved the things that I’ve made and have been proud of what I’ve done. I think the issue lies more in the self, in asking people to pay me for the things I do. As much as I’d try to talk myself up that I’m worth what I ask for, I think deep down, I didn’t believe it myself and it came across that way. Or, not that I wasn’t worth it so much as just wanting to enjoy what I was doing without worrying about the monetary aspect behind it.
Which makes for TERRIBLE business practice.
I was quiet yesterday, and my husband noticed. My feelings were strong – and confused. I was elated by the outpour of support from so many people, while dreading taking their generosity, while grateful for it, while sad that those I thought would be more supportive disappeared, while humbled and embarassed, but proud of reaching out instead of falling into further trouble. I was also glad to have the thought of business off my mind, while sad to be letting it go.
Emotions are complicated and hard, man. But I’m ok. I’m more than ok. I am so, so blessed to have such amazing people in my life.
But gratitude and love win. Every time. And that’s how I’m feeling right now.
Plus exhausted beyond reasonable comparison. The last few weeks have taken alot out of me, and I don’t feel like I’ve given myself the proper chance to rest and catch up. And the more tired I am, the less I sleep, and the worse it gets. And today I’m definitely in a huge energy deficit, and I’m just staying in bed. I’ll take a break from that to do a small yoga practice and move some blood and tissue at least a little, but I don’t think I’ve got much else. And that’s ok. I don’t have anything I need to get done today, and nothing pending, and anything that’s on my to-do list can be put aside for another day.
This is where my boundaries and self care kick in. I’ve pushed myself here and there, mostly to see how my body would respond. It’s little experiments to know how far I can go and what activities I can do. Sadly, it’s not nearly what I’d have hoped for, but I’ll take what I can.
My MRI is on Saturday, which is faster than anyone expected. If the MRI comes back with issues, I’m being sent to a neurologist. If it comes back clean, then a rheumatologist.
We’re narrowing things down, finally, and I’m looking forward to finding a better normal than I’ve had recently. It’ll still be awhile, but it’ll come. I have faith.
But in the meantime, I feel so grateful for everyone who has helped us, and I’m excited for the day that I can pay it forward again.
Asking for help has never been easy. It means I owe a debt, and it’s not always a debt I’m sure I’m able to repay, so it’s only when I’m truly desperate that I do what I feel is grovelling to others to request help. If I’m able to repay the favor, then it’s not hard to ask, but without having that balance I struggle with the request.
Experiences can be humbling, can’t they?
I am at what might be my most humble. I’ve had to ask for help before, but not quite like this.
This year has been a struggle, and we’ve kept many details to ourselves. During yoga teacher training I wasn’t able to keep up well with sales so much, as there was so much going on with trying to finish training as well as my aromatherapy certification. There was also a side project underway where a new company became incorporated, and so much effort had been put into getting this endeavour underway. It was ready to go, and we were just waiting for our financing to come through. It would have been so good for us, but that’s when things started to go wrong. That’s when I could no longer make sense of the things happening. That’s when I couldn’t focus on any of the tasks I was working on without making silly mistakes. And that’s when I had to admit that I couldn’t move forward with the company we incorporated, because it was completely a team effort and we were both needed in order to move forward with it.
We cancelled all plans with the incorporation. We still own it for the time being, but nothing has progressed with it. We wanted to wait to see what would happen.
I am short of my yoga teacher training certification by 10 hours because the worst of my symptoms came up during the retreat, where I found out just how much I was affected by the sun and heat.
I couldn’t finish my aromatherapy certification because of the brain fog, which has made it nearly impossible to not only read, but to retain new information.
I moved my products out of the house in case they were the source of my issues. This makes them difficult to sell.
All of my plans and income sources had to be put on hold because I couldn’t focus on them. Whenever I tried, I made mistakes, or forgot, and I couldn’t stand the idea of disappointing anyone. So that’s when I made the hard decision to temporarily shut down Bohemian Alchemist, with hopes I could pick it up again soon.
But I couldn’t. My inventory was stored offsite, and trying to sell it was difficult to do when I had a hard time managing the inventory. I couldn’t offer services or products out of fear of making a harmful mistake. I was making mistakes, and it was only a matter of time before I made a mistake I’d regret and hurt someone. Thankfully, they were all minor, but they were enough to make me realize that it was time for me to stop. I did the responsible thing by keeping my clients safe, rather than pushing myself further beyond my limits in order to keep everything operational. I was already beyond my limits, which had changed so, so much from the beginning of the year.
Closing was hard. So much harder than I could ever express. I love my business, and I love the products I’ve made, and I loved the direction I was heading with it. But mostly, I loved the connections I made with people. I worked hard to start and maintain it (not without help – I’ve had so much help from so many people!). I found that hanging off of “maybe”, “possibly”, “one day” and “eventually” wore on me so much, and I couldn’t answer people who wanted to know when I was opening again. The encouragement from others was well meaning, but brought my attention continuously to the responsibilities waiting for me. I felt horrible anytime someone wanted a custom order and I had to refuse. I felt inadequate, disappointing and that I was letting people down – but the one that mattered most was my husband. I have not been able to contribute to our income. He has been ever the encouraging, supportive person he always has been, but this is an insecurity of my own that stems from old, deep hurts and experiences that are difficult to keep controlled when I’m at my most vulnerable.
Everything was shut down. I found ways to keep busy and to keep my flare ups moderately controlled. The more controlled my symptoms are, the more productive I am, which is how I’ve been able to reasonably maintain our home. It hasn’t been ideal, but we’ve made it work.
But our expenses added up. Medications and supplements and specific clothes that helped reduce symptoms, fuel to get to and from appointments, window replacement, so on so forth. I’ve listed some of our expenses previously. They continue to add up.
And then our hot water tank decided to die on us right after my surgery. The nerve of it, I dare say.
And it’s been a struggle since then.
I hit a low point a couple of weeks ago, which I also shared part of. But not in entirety. I had cabin fever in a bad way, and I was unsure of everything. We had been thinking about getting a service dog to help with certain things in order to get me the support I needed to function better in the day, but I wondered if maybe this was too extreme.
And so did a few others. A few people have mentioned that they believe I may be bipolar, or that perhaps I need to find God, or meditate more, or to “just relax”. It has been implied that my symptoms are imagined and that I’m a hypochondriac. Perhaps I am just looking for attention.
These comments come from very few, select people, but they hurt, more than they could ever know. I believe they had good intentions, and truly believe the things they say. There were harmful, hurtful words regardless of intent, however. They made me think that, maybe, they weren’t wrong. They made me feel insecure. They made me feel that I was sharing too much about our situation, and that perhaps I should keep it more to myself. I found engagements with people to get less and less, and I wondered if I was believed at all or not.
To be fair, when people see me they see that I’ve lost weight and am rocking a fairly normal body size for the first time in a decade, see me walking and talking and my clean house and see my rosy red cheeks, unaware that the redness is part of a flare up. What they see seems healthy.
What they don’t see is everything else I’ve previously mentioned. The crippling fatigue, the numb cheeks, the thick brain fog and confusion, the double vision. I’m functional, but very carefully. They don’t see that. They don’t see the little leg pump I do before I stand up, nor do they realize why I stand up so slowly. They don’t see my balance as that bad. They don’t see me avoiding bending over to avoid passing out. It’s hard to believe, sometimes, if there’s nothing to see.
It’s there, however, if you pay attention.
For the most part people have been kind, caring and supportive. Several have offered help, and have stepped up to help where we need it most. Right now, what we need most is financial. Bad timing, I know. Our bills are paid, the animals are fed, but we’ve been maxed out in all accounts since early fall and we have been just barely getting by. The prospect of catching up hasn’t been promising – which also means no possibility of a service dog. I will not commit to getting an animal that I am not able to afford to care for.
So I reached out. I asked for help, as so many people have encouraged if I needed it. And I need it. I presented my case. I made a post on my Facebook page. People asked me, “What can I do to help?”
“Share my page post,” I responded. I don’t expect anyone to buy things they don’t want or need, but sharing my post would help get the word out, and perhaps reach and audience that could help. It costs nothing and is easy to do. But then, I always seemed to follow it up with, “If you can’t, then I understand.”
I don’t understand. I don’t know why I ever said that. To be nice? To give them permission to ignore it? To make them think that we weren’t in as tight of a situation that we are? Or maybe I’m just an idiot. I really don’t know why I said it that way, but that’s what I do.
When I went to see my psychologist and he asked me how I was, I said, “I’m great! Thanks! How are you?” – which I then had to admit that I lied. When he asked why I said that if I didn’t mean it, I admitted that it’s a trained response after growing up in a place that didn’t admit to weakness. I believe working retail also encouraged said response. Customers don’t want to hear how great you’re not. They’re there to spend money, and that’s all. It’s just what we are trained to respond with in order to maintain courtesy, and I’m trying to retrain that response. It’s not an easy thing to stop doing, especially when my defence mechanisms are locked and loaded at the moment.
Anyways, Some people shared my post.
And some people never responded, and never shared it. I see so many people share things supporting other events and complete strangers, but have not supported me where I need it most. Sometimes with excuses explaining the reason of their lack of support – which I appreciate, since at least I know where they stand. Most often the response was silence, however, and it’s the silence that hurts most of all.
And that hurt contributed to my downward spiral, which also caused worsening symptoms and an emotional meltdown, which made my spiral even worse. I spoke with my internist. I was so tired. Frustrated. I was falling apart. He assured me that he believed there was something happening and that we needed to push through just a little longer to try to find some answers. He brainstormed some ideas, agreeing that I needed a break. He prescribed something to help me sleep – something I do not get nearly enough of – and agreed that a service dog would be beneficial to my case.
This helped alot. The reassurance from both him and my psychologist made me realize that I was spiralling down the hole of other people’s perceptions and expectations again. They told me that I’ve been holding myself together so much better than many other people might in my situation. I don’t know how true that is or not, but I hung onto it. It’s been a source of strength for me to keep pushing forward.
During one of my appointments, I was asked what I would do if I had all of the power in the world.
I answered that I’d give it away to someone who would use it well.
Then I was asked what I would do if I had all the agency in the world.
I had to think on it, but eventually I answered that I’d use it to become a better person.
Thinking on this…. I HAVE all the agency in the world. That’s not something anyone can control, change or take away from me – only I have the power to do that.
Which gives me all the power on the world to do what I said I’d do. And that’s not a power I’ll hand over to someone else, regardless of their intentions.
I need to stop giving away my power. It’s the only thing I can truly control when I keep it as my own.
I needed that challenge. And I was able to use that to find my calm once again. And my power to become that thing I want to be.
I let things be. Kept my post up, and just gave it over to the universe. A friend of mine told me, “The universe gives you only that which you can handle.” I responded that the universe has more faith in me than I do, but there was an important point in that, and one that I do agree with, even if I struggled with in that moment.
And then the most amazing thing happened. Or, rather, person, and things seem to be progressing in a way I never though I’d see.
I had asked for help, and held unrealistic expectations of others. It was never about them, however. Those expectations were based on my own disappointment in myself and my situation. Once I let go of that disappointment, as well as the expectations of others, things have changed quickly. People have taken my call out seriously and I have found myself surrounded by more support than I had hoped for. There are still those in my corner that hold silence, which is disappointing, but I hold no grudge towards anyone. No one can possibly know how the situation truly feels, and I hope they are never in a position to fully understand – which would mean being in my situation. There are those that do understand it, because they’ve been through a similar experience already. And I have never held more compassion, empathy and understanding for them than I do now.
It’s hard to accept help. Harder than asking for it, especially after the disapproval of some people. But people find themselves in situations, sometimes, and need a leg up. This time, it’s us. Now that help has been incoming, I find myself wanting to offer things to pay them back – knowing full well that we’re not able to. It’s been difficult to say “yes” to the help offered – but I have been. I’m breaking out of old habits and routines, and finding a new way to be.
And once I’m able, I’ll find way to pay it forward again.
The universe knows my gratitude, my fear, my uncertainty and my feelings of personal failure. And I’m learning to trust it to catch me with grace as I’m falling, so that I can later catch others with that same grace and help them back up.
It feels similar to performing the “Angel Walk” at the end of the YTT training during graduation. I may have been short 10 hours from a signed certificate, but I graduated in so many other ways than I ever could have expected.
I reached out for help. And now, I’m learning to accept it with gratitude, and no expectation.
Admitting that I need help with something has NEVER been easy for me. And normally, the things I needed help with were minor, so it wasn’t so bad asking for (and getting) the help, because it was small and easy.
This time it’s a bit different.
I grew up knowing that you don’t ask for help. You don’t take help. You do it yourself, or you don’t do it at all. Sure, you can give to others, as long as there’s benefit for you in it, even if it’s later. And you hold them to that. You make sure that whatever they give you, you give back in some way, because that’s the way things are done and there’s no way that you “owe any favors”. It was like being a Lannister: We always paid our debts. There is no giving without receiving, and no receiving without giving in return. It’s a tedious account of cheques and balances that can be a hard game to keep up with.
I remember one Christmas during an especially tumultuous time in our family, and my sister and I opened our gifts. One that I opened was an electric keyboard. I was confused. The betrayed and disappointed look on my sister’s face is unforgettable. My sister was the one who had asked for it, so I started to hand it to her thinking that the tags had been mixed up, and my dad stopped me. “No, that’s for you.” He turned to my sister, and explained that if she wanted to go ahead and move in with our mother, then she could go right ahead, but the keyboard was mine and she couldn’t take it with her. The keyboard was a bribe to make her stay and make her feel guilty. I don’t think we ever really talked about it. I remember being too young to truly understand the significance of this action, but I remember the hurt involved, and I remember aplogizing to my sister for getting the gift she wanted. I felt guilty.
That guilt, as well as much more, followed me into my adult life.
This is the way I learned about gift giving. It wasn’t about making the other person happy – it was about doing it out of expectation. Sometimes even out of manipulation. The gifts I gave were often disengenous, insincere and unwanted, because the thought behind it was typically to get them SOMETHING, even though I didn’t know what. So most often it was a guess to wrap up a thing prettily and have something to exchange, in hopes that I lucked out and they were appreciative. Sometimes the gifts were made, sometimes bought, but more and more often I found people were indifferent to the gift and I became more and more insecure about my gift giving abilities. I learned to loathe Christmas and birthday shopping, because I just didn’t know how to give something that I felt the person would genuinely enjoy. The more I loathed gift shopping, the worse my gifts got. The times I enjoyed gift shopping I usually nailed it – because that person was truly in my mind as opposed to the expectation of giving something for the sake of giving.
I didn’t understand the true value of gift giving until much later. I’ve always tried to give in whatever way I was able, without wanting anything back. I was always told that I was selfish and disingenuous when I was a kid, and I was trying to be better than what they said I was. I didn’t want to be a bad person and I wanted to be good and generous. But then I was asked by my elders what I got for giving so much, and happiness just wasn’t an acceptable answer. Trying to find a balance to please everyone seemed impossible.
When you’re growing up and trying to figure these things out, it gets really confusing to have such conflicting theories.
So for years I tried to maintain that balance of cheques and debts. If someone did something for me, I’d do something in return. If I did something for someone else….. well, I didn’t always get something in return, and usually it didn’t bother me. But I have always had a hard time taking a gift as they were, with no expectation or guilt if I didn’t have something to offer in return. It’s just the way I knew the world.
That mentality has been slowly worn down over the years, and I’ve learned that I love to give. The shift truly started with the threat of going to jail. And it’s a story I’m going to share. Not one I’m proud of, but it was a humbling lesson for me.
I was 17 or 18 years old, working two jobs to cover rent and food, couldn’t afford a bus pass and used my bike to get everywhere, no matter what the weather was like. It was exhausting. Being on my own was still fairly new, and I was struggling trying to make everything balance. One day on my way to work, my bike brakes stopped working in the middle of a major rain storm and I was scared to keep going, so needed to hop on a bus with it. I always tried to keep bus change on me, just in case, but I had nothing at that time, and I knew I was short on change. I had checked all corners, drawers and couch corners for every nickle, dime and penny I could find. The driver wouldn’t have known for sure, though, since my fare was paid in such small change, and I could only apologize and let him know it was all I had. He scowled in suspicion as each coin tinkled into the container, but he gave me my transfer and I got my bike settled in for the rest of the trip, quickly forming my own indoor pool underneath me in my drenched clothes.
In getting to work, I realized I had no lunch. I can’t remember if I forgot it or if I didn’t have any food at home. I was in the habit of not eating breakfast. And I had to work my second job after the first one. I tried to make it through the day, but by the time my late lunch came on, I was lightheaded, hangry and ready to eat anyone that crossed my path.
But I was proud, and didn’t want to beg for food.
I went to the Zellers and stuffed a pack of ichiban noodles into my shoulder bag, hoping no one noticed, and went for the exit to go eat it. I was floored when someone grabbed by elbow tightly and whipped me around. “You can come with me, ma’am”, store security said.
I was terrified. I had no idea what to expect. Obviously, I was caught. I was hungry. And I had to be back on shift in 20 minutes.
I hadn’t realized that I was carrying a second package in my hand at the time, as well. Apparently I had grabbed another one without thinking, and very obviously walked out of the store with it. I’m not the best thief that ever did thief, apparently. My sneak skills were apparently not very finely honed. (Although, there was that one time I walked around a dollar store twirling a fun keychain with full intent of buying it, only to realize much later that I had this thing on my finger and couldn’t remember where the hell I had picked it up. When I did, I brought it back with so many apologies….)
She sat me down and asked me what else I took, and I pulled the other package out of my bag. She just looked at me. I was crying. I was apologizing. She asked me why I stole $3 worth of product, and I told her I simply didn’t have anything to buy it with, and I had no food until I could get home after my shift at the bar that night. It was early afternoon still. She said that she was under obligation to report me for minor theft, but if I didn’t want to have a criminal record then I could do community service. The thought terrified me, but having a criminal record scared me more. So I agreed to the community service.
She put the soup packages back into my bag, with a few dollars to grab a snack later if I needed. I was so grateful for her kindness. I never went through Zellers again while I worked at the mall. I wish I had gone back later to thank her and bring her coffee, but being young, I was too embarrassed or insecure or scared or something – because she was so nice, despite sending me for community service, and I didn’t know how to deal with that. I wasn’t used to it.
Experience lesson #1: Don’t forget a lunch, or at least a snack.
Lesson #2: It’s better to ask for help than to take from someone else. Someone will help. And we’ve all been there.
Lesson #3: Humility.
Lesson #4: Kindness from strangers (or people in general) isn’t a thing to fear, and they aren’t always looking for something in return.
Community service terrified me. The volunteers at the homeless shelter knew I had committed a crime, so how would I be treated? As a criminal? I was proud, bold, and didn’t want to show my fear. I had to work in one of the shelters downtown – a place I had never experienced before. I scrubbed toilets, washed walls, changed bedding and washed dishes for the homeless. Some made dirty comments and catcalled me as I worked, but most averted my curious gaze and my attempt at a friendly (although scared) smile altogether, when I finally pulled out of my own shell to look at my surroundings a bit more.
Lesson #5: Be humble.
By the time I finished my community service, I had experienced a whole new world that I hadn’t really known before. Many had mismatched shoes and socks, they were unwashed, they smelled terrible and they didn’t help around the facility. Some were quiet. Some were angry. Some were sober, others were not. Some glared at me with obvious resentment, while others had looks familiar with envy.
And they were all thankful for the help offered at the shelter. And they all had a story to share.
Lesson #6: Listen.
I was welcomed to eat with them. I didn’t, at first, but eventually took them up on it. The volunteers shared stories. Some were previously recipients of the shelter’s services. Some were homeless. Some had homes, but nothing else, and came for food. And the more I listened, the more they shared what I now know to be normal people who once led what we know as normal lives who got lost in their situations that brought them to this place, to teach me these lessons they learned themselves that would take much longer to truly sink in.
Lesson #7: Be kind.
I think of that situation often, from my own mistakes, to the kindness of the security guard and the kindness of the shelter volunteers and the people who frequented that location. And I’m grateful for all of it, because many of the lessons I learned immediately while others took a bit longer to take hold. But it changed my life and my outlook on people and their situations, and especially on judgement.
And I’ve learned that I don’t need to please anyone else with the methods of my giving, and it’s my decision to make. I learned that in giving, I always get something in return regardless. Friendships, knowledge, love, satisfaction, smiles, hugs, lessons…. it’s something I found I loved doing, but started not wanting anything back anymore. No credits, no debts, no worries.
Sometimes I gifted money, but more often it was time, or food, or things we could part with or gifts that we’d find that just suited a person so well. It just felt good to do it. I still had a hard time accepting things from others, though, and would respond with statements that it was too much, or that I didn’t have anything to give back, or that they shouldn’t have.
And in doing so I truly was ungrateful. Someone went out of their way to do something kind for me, and I didn’t want it, because I didn’t have something to give back, which made me feel bad. And I couldn’t get the comments about being selfish or what I knew about having a debt to pay out of my head. But what about the other person?
In reversed roles, I’d feel bad if a gift was given back to me, because I’d see it as a sign that they didn’t like or appreciate the gift, or perhaps some other hidden reason that I didn’t understand regarding our relationship. So in refusing gifts, was I causing harm to my relationships? Probably. I started practicing gratitude, and accepting what people offered, how it was offered, with sincere appreciation. The hardest of those gifts to overcome have been compliments. But I’m working on it. It’ll be a lifelong practice that I’ll never perfect, I’m sure.
The best I, or anyone, can do is to be better.
Since it’s just my husband and I, we frequently buy each other gifts randomly throughout the year, as well as things for others as we see them and feel it’s something that person would truly love. When it comes to traditional gift giving at Christmas and birthdays, we’ve stopped following tradition altogether. It was just too much. We don’t give or expect Christmas or birthday gifts at all anymore. We’ve been called grinches at Christmas, and we’ve been given slightly dirty looks, but we decided to do what was best for us. Christmas used to cause us both alot of stress, and it wasn’t fun. We realized that this was not the spirit of gift giving, and we have no regrets for making this change. Due to work schedules and time off around the holiday season, it usually also caused much financial distress ontop of the expectations, which has been alleviated. We’ve learned to truly simplify the holidays and only do those things we are able without reaching a point of exhaustion, and the time spent with friends and family mean so much more to both of us now than they ever have. We can be truly grateful and loving instead of stressed and excited for the season to be over.
We gift as we’re able and as we’re thinking about people specifically. We make gifts, as well, for those who enjoy the handcrafted wares. We used to both volunteer quite a bit, but as that has declined we’ve donated monetary gifts to different organizations, events and people who need it, instead.
This year, things have changed, and we haven’t been able to gift much at all.
Asking for help is not something I’m well practiced at… but that’s changing, too.