New Developments

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Photo by Matthew G via Flickr. Used under Creative Commons.

My husband found a local job! We owe a debt of gratitude to my friend’s husband, without whom it would not have happened. There was nothing on my husband’s resume that should have made him look like a good fit for this particular job, but the employer told him, “A recommendation from [friend’s husband’s name] goes a long way!” We’ve often complained that it’s not what you know, it’s who you know, and that is certainly true. This time it actually worked in our favour.

The job is very different from anything my husband has done before. It’s mostly physical and involves a lot of lifting. But he likes it, and is grateful to have something to pay the bills while he figures out his next move. It’s full time, but minimum wage. That’s fine though, since living with my parents we don’t have housing costs except for contributing $100 a month for electricity and gas because apparently we use a lot. And I don’t hate living here as much as I thought I would. It’s going okay (other than some small issues, which I might write about in future posts). It makes a big difference that we can buy our own food and everything. My parents are providing a roof over our heads, but we are not completely dependent on them, which makes it more bearable.

In the meantime, my husband is planning to enroll in an online course (from a reputable university, of course) that will fill in one of his skill gaps. Often employers looking for someone with his particular background also want this one particular skill that he doesn’t have, so he is going to rectify that. With his current job being so physical, he misses the intellectual stimulation of his former work and will be happy to have that with this course in his evenings and days off. I think the course lasts about nine months. So maybe next year he can get his career back on track again. Paying for this course would not be possible if we weren’t living with my parents (it’s going to stretch us financially as it is) so we are definitely staying put for a while.

I stopped going to those awful employment workshops. I had to go to the doctor for a routine appointment and he took my blood pressure while I was there, and it was scarily high, despite the fact that I’ve never had high blood pressure before. Since I was so stressed out when I was at those workshops I did not think continuing to go was in my best interests. I e-mailed my counselor and told her, “For personal/health reasons I need to cancel all my upcoming appointments and workshops.”

I’m supposed to go back to the doctor to get my blood pressure checked again but I’ve been putting it off. I want a chance to try to bring it back down naturally. With moving and all the related upheaval and stress in my life, I was not being as diligent about my healthy eating and exercise habits. I am now back on the wagon, so to speak. I hope it will make a difference.

We have started attending the church I used to go to in this town when I was single. I stopped going there about fifteen years ago after a major humiliation and was determined to never set foot in the building again. Once I realized circumstances were bringing me back to this town, I became certain that God wanted me to go back there and face it. My first Sunday back, it just so happened that two of my closest friends were also attending. One of them still lives here and attends with her husband, but the church has three services and things worked out so that we happened to attend the same one that Sunday. The other friend no longer lives here, but had made the trip to visit her family with her boyfriend that weekend, so she and her boyfriend were there too, along with other members of her family, who, back in the day, were almost like a second family to me for a while. We all sat in the same section. I had been nervous about my first time back, but it turned out that I was almost literally surrounded by people I felt safe with. I was emotionally moved to tears when I realized it.

My husband and I have continued to go, and it’s been good. The church is like a completely different place. The whole atmosphere is completely different, in a good way. The people who were instrumental in my past humiliation are no longer there. In fact, there are very few familiar faces. I encountered one woman I used to know and she didn’t remember me at all. “I have a memory like a sieve,” she said, when I was trying to explain who I was and how we knew each other. I am not offended by that. I am relieved. If people don’t remember me, they won’t be thinking bad things about me based on things that happened in the past.

I don’t intend to get heavily involved there. The last thing I’m looking for is a bunch of activities to get involved with and events to attend. Sunday is enough for me. And if I’m not heavily involved, I won’t be getting overwhelmed, and if I’m not getting overwhelmed, I hopefully won’t make a lot of social mistakes that will lead to people hating me like I did before. I didn’t know my limits then, but I certainly do now.

 

The Move

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Photo by Steve McCullough (stevemccullough.ca) via Flickr. Used under Creative Commons.

My husband and I arrived at my parents’ house a few days ago. It was a rough few days leading up to it, with trying to get everything packed and into the moving trailer, trying to get the apartment clean enough to have any hope of getting our deposit back, and then the long road trip to get here. My parents actually came out there to pick us up and bring us back here, for which I am very grateful.

I ended up hurting my back, which made things more difficult, and my husband had a massive, frightening panic attack in the middle of the night before we left. He was shaking and almost hyperventilating. He ended up running outside into the night air outside our city apartment building to try to calm down. At first I went with him, even though I was scared to go out in the middle of the night, but then after we came back in and I had gotten back into bed he ran out again alone. That was scary for me. I was worried something would happen to him out there alone so late.

Two of the hardest things about the move for me were not having a lot of my stuff accessible to me while it was packed (and some of it has still not been located and unpacked since we’ve arrived for various reasons and I am agitated by that), and having my eating disrupted. I usually drink a very low-carb green smoothie for breakfast, because I’m prone to hypoglycemia and I find if I eat carbs in the morning my blood sugar drops later in the day, but if I don’t eat carbs at all until dinner time my blood sugar remains stable. I realize this is not the common advice given to hypoglycemics, but it’s something I’ve discovered about my own body and I find that this works for me. I also find that if I don’t eat carbs early in the day, I don’t even feel hungry for most of the day and end up eating less food overall, which is a plus in our current situation, not knowing where our next source of income is coming from.

My breakfast smoothie usually consists of:

  • 3 cups baby kale
  • 1 tbsp coconut oil or grape seed oil
  • 1 tsp flax meal
  • 1 squirt of Mio (or similar brand) water flavouring
  • 3/4 of a scoop of vanilla whey protein powder
  • water

I used to add some fruit until I realized the full extent of what the morning carb consumption was doing to me and realized I felt better if I didn’t include it.

Unfortunately, as we were preparing for our move, I ran out of kale and protein powder, and I wanted to eat up what we had on hand and not buy anything new because that would mean more to either move or throw out. So this meant for a few days before the move, the two days of the road trip to get here, and the first two mornings here until we went into town to buy groceries, I was not able to have my smoothie. I ended up eating more carbs than I’m used to, and it made the road trip in particular hard because every few hours I felt nauseated and irritable from the hypoglycemia and I had to pester my dad to stop somewhere. He is not a big fan of stopping on road trips. It’s amazing we (me, my husband, and my mom) were ever allowed to pee.

As for my parents’ house, in a lot of ways it’s better than I thought it would be. (They only moved here a couple years ago and I had never even visited before this.) I’m actually quite pleased with the basement suite. We have more space here than we did in our apartment. It does need work to make it look nice but that is part of the deal; we will help with the renos. My husband has been painting for the last two days and it’s already making a big difference.

I’m a little disappointed that the suite’s kitchen can’t be used yet. It’s all a bit of a bait-and-switch, where I was told, “You will have your own kitchen,” and then I get here and find that it’s not even really a kitchen; it’s just a space where the kitchen will be, and my husband will have to help my dad put it in. (I do realize I was not lied to; I will have my own kitchen, just not immediately.) Just to be clear, they are not doing this solely for us. They had planned to do this anyway to increase the value of the house, they’re just moving up the time frame for our sake. My parents estimate it will be done by Christmas. Right now all there is is a small, bar-sized fridge, a disgusting, unusable sink, and a counter piled with my parents’ junk. But the rest of the suite is usable, thank goodness. The bathroom is nice and the shower has great water pressure. That’s a big plus.

I truly am grateful for the place to live, but to be honest I hate sharing my mom’s kitchen with her. She doesn’t tend to follow food safety rules and we bicker about it. I seem unreasonable and neurotic to her, but I am only like this because I get sick so easily and when I get sick it hits me ridiculously hard. I am only trying to take care of myself and prevent that. If others were as prone to such awful physical maladies as I am they would be more cautious about such things too. That is only logical.

Another problem is the smell. As I wrote in my post on my other blog, my parents’ houses have always had a very distinct odor. They have always blamed it on various things but the smell follows them wherever they go so I think it’s just them. You’d think I’d get used to it, especially having grown up with them, but I never have, and it’s especially bad when I come back after being away for a long time like this. I was finding it really hard to bear at first. But then I found my stash of plug-in air fresheners and plugged them in, and I discovered that one of my Bath and Body Works shower gels had leaked out into the bag it was in, which at first I was upset about, but then I realized that hanging the bag up in the bedroom made the wonderful scent fill the room. I feel so much more comfortable now that I can smell my favourite scents here. It’s ridiculous how unpleasant and distracting the odor of my parents’ house was for me before that.

Generally speaking, in spite of certain negatives, I think I can actually be fairly content here, especially once the kitchen is in.

The main problem right now, of course, is the lack of income. My husband and I both have appointments with a local employment counselor tomorrow and I really hope my husband can find something. I am willing to work too, but to be perfectly honest I am hoping I won’t have to, because of how sick and stressed and prone to embarrassing and debilitating meltdowns I get when I’m working. I would be so much happier at home. But I realize I’m not in a situation where I can choose how I want to live. I just have to do what needs to be done and I hope I can handle it and stick it out as long as possible.

Oh, I almost forgot: One really great thing about this move is that I don’t have asthma here. I am completely inhaler- and wheeze-free all of a sudden. The same thing happened in 2006 when I moved back to my home province from elsewhere. I’m certain I am allergic to something that doesn’t exist here. My asthma was pretty scary sometimes, and inhalers are expensive, so it’s a huge relief to be free of all that!

 

 

My Weak Body, Crumbling in the Face of Adversity Again

Right now, in our current circumstances, I need to muster up all the strength I have to get through it. But instead, my body reminds me how weak I am.

Fever, sore throat, cough, blocked sinuses, vomiting, weakness. Trouble breathing too… but then I had that before I contracted whatever this virus is. I had just gotten back on the inhalers and they were working perfectly until then, however. Now even they are not enough.

I had been feeling good about how diligent I was being with my exercise, even with how stressed out I was, but now I’ve missed two days, because I’ve been afraid that if I tried to drag myself onto the treadmill with a fever I would keel over and hurt myself.

I had also started making headway on the packing, but I haven’t done any of that in two days either.

Time seems to be going by so fast. It’s getting away from me. I can’t keep up with it.

Why am I like this? The stronger I need to be, the weaker I become. I am frustrated and even a little angry because I feel betrayed by my own body. Why can’t I just suck things up and courageously do what needs to be done like other people can? If I’m not breaking down emotionally, I’m breaking down physically. Sometimes both.

Asthma and Stress and Moving

can't breathe
Photo from Photofunia.

My asthma has gotten so out of control in the last couple weeks that I’ve actually been scared. I had been trying to get by without using inhalers because I don’t like being on them all the time. For one thing, they’re expensive (and we have no insurance or anything that covers prescription medication) and for some reason after using them for several months they start making me gag and vomit, so it’s not a good long-term solution for me. I was fine for several months but I think the stress of my husband’s unemployment and the seeming inevitability of moving in with my parents has been making my asthma flare up again to the point where it’s worse than it’s ever been. So I have had no choice but to go back on the inhalers.

I recall reading an article somewhere that mentioned a correlation between having asthma and allergies and, on a psychological level, seeing the world as a hostile place. That is no surprise. With all my sensitivities and all the bad things that have happened to me in my life, I don’t have a particularly favourable view of this world or my life in it. Everything is so, so hard.

Right now I feel like I simply cannot move forward. I cannot face what is coming. I gave our notice to our landlord on Wednesday but I haven’t started packing yet and don’t feel like I can handle a big move like what we have to do before the month is over. But there is no choice. I can’t do it and yet I have to do it.

Trying to Make it On My Own

Toronto

Photo by Kat Northern Lights Man via Flickr. Used under Creative Commons.

When I was a teenager, I couldn’t wait to be old enough to live on my own. My dad had left just before I turned 14 and a couple years later my mom decided we needed a new start, so we moved to a small town of her choice a four-hour drive away. Unfortunately, I hated that town. This is going to sound really flaky, but I just got a bad, oppressive vibe there. Plus, it was really hard for me to make friends there, and it seemed like all the people my own age who were willing to have anything to do with me when I first moved there were heavy drug users. I drank alcohol, but illegal drugs were not my thing and being around them made me really uncomfortable. Meanwhile, I didn’t have a great relationship with my mom. She yelled a lot and was very critical. It’s like she took pleasure in pointing out things I was doing wrong and ways in which I was at fault for various things.

For example, sometimes my dad would phone and if I was friendly to him, my mom would scream at me, “How can you be so nice to him after the way he’s treated me? I’m the one who’s always been there for you! Where is your loyalty?” So then one time I refused to talk to him, thinking I was showing loyalty to my mom like she wanted. But then she yelled, “How dare you treat your father like that! No matter what he’s done, he’s still your father, and you have no right to disrespect him that way! If you keep doing this he’ll never come back to us!” This is only one of many examples. It was an ongoing pattern in our relationship when I was a teenager. I couldn’t do anything right in her eyes and I got yelled at for every little thing. It was unbearable. I don’t even have words to describe the pain and stress her yelling and criticism caused. Needless to say, home did not feel like an emotionally safe place for me.

I had dropped out of school when I was 14, but I was enrolled in a part-time education program by this point, and through that I got involved in a government-funded employment program for at-risk youth. They got me a summer job in an office, and when summer was over, I was kept on as a part-time employee. I was extremely good at not spending any money back then, so nearly every dime I earned went into my savings account. At 18, having saved up a small nest egg, and with my hours now being drastically cut at work anyway, I moved back to the hometown I desperately missed. Alone.

It never occurred to me that I might not be able to handle it. I had this boundless optimism (which is now long gone), and even though I had already failed at many things, it still never occurred to me that I might suck at life. I just thought anything would be better than living with my mean mom in that town I hated. And I was perfectly willing to work for what I needed. I assumed I was able to do that.

I initially rented a basement suite owned by a family friend. I assumed I would find a job right away, but it turned out to be harder than I thought. Part of the problem was the suite’s inconvenient location and the transportation issues resulting from that. I loved living alone, but seeing how quickly my little nest egg was diminishing just due to basic living expenses, I took a friend (the frenemy I wrote about here) up on her offer to share an apartment with her and her boyfriend. It seemed like a wise decision, as rent would be far cheaper and it was close to all amenities, making my job search much easier (there was no internet in those days; you had to pound the pavement, as they say). It actually went well at first, but then they broke up and my friend moved out.

Now here’s where I made one of my clueless social blunders. It didn’t occur to me that because my friend had moved out, I had to move out too. I liked the apartment and the location, and I got along well (platonically) with her ex-boyfriend. He was a really nice guy. It wasn’t like he had treated her badly; she had just gotten bored with him and wanted to move on, so I didn’t see how it could be a loyalty issue like when I was nice to my dad in spite of him treating my mom badly. But my friend got very angry at me for continuing to live there, and I was utterly clueless as to why. Now in retrospect I can understand that it was highly inappropriate for me to stay there, but I couldn’t see that back then. I was just baffled. I saw that apartment as my home. Why should I have to leave my home because of a decision someone else made? It was bad enough when my parents broke up and I had to go wherever my mom went, but I was an adult and could do what I wanted now, or so I thought. But it understandably led to a huge strain in our friendship.

And then a few months later my friend’s ex-boyfriend moved out too. He couldn’t cook and I certainly wasn’t doing that for him, so he found a room-and-board situation that included meals. And I couldn’t afford to pay the rent on my own, so after a disastrous situation resulting from placing an ad in the paper for a new roommate (which deserves its own post), I ended up having to move anyway.

The next couple years were spent moving from place to place and having roommate after roommate. In total I lived in six different apartments/suites with 9 different roommates. My living situation was a constant source of stress and worry. Some of my roommates were very unpleasant. One of them told me she thought I had a mental illness because I spent so much time in my room, but I was only doing that because being around her was a constant sensory assault.

I wished I could live alone again, but I just couldn’t afford it, even once I had found employment.

I was only able to find minimum-wage jobs (not surprising, given my lack of education). The first one was at McDonalds, where I started working a few weeks after moving in with my friend and her boyfriend, but I only lasted six weeks. The noise and the fast pace were more than I could handle and I ended up having a crying meltdown and getting labelled “emotionally unstable” by my boss, so I quit in a state of overload and humiliation. About a month later I landed a job in a mall bookstore and worked there for about 15 months.

I performed fairly well at the bookstore, despite the stress of dealing with customers, but I had a difficult boss. I got to be good friends with one of my co-workers (whom I’m still friends with to this day), and our boss became very paranoid about the friendship. She accused us of plotting against her (which was a completely false accusation; I wouldn’t know how to plot against someone even if I wanted to, and I have certainly never wanted to) and forbade us to speak to each other. One time, she saw us smiling at each other across the store and demanded to know what we were up to. We were “up to” nothing. We were friends, and we smiled when we saw each other; it was as simple as that.

I have always tended to get sick a lot (mostly bad colds/coughs and nausea/vomiting) when I’m in the workforce, so my choices are to either come in to work sick and get criticized for that, or call in sick a lot, and get criticized for that. During that time, I tended to call in, but then my boss accused me of calling in sick because of hangovers! She even wrote it in my employee record! Again, another completely false accusation. I have never called in sick because of a hangover in my whole life. I did drink socially, but I’ve never been falling-down drunk in my life and I have rarely had anything resembling a hangover. But I guess in her mind, there could be no other explanation for such frequent illnesses. It is odd, I admit, but I have always been this way and nothing I have tried has helped.

The work environment became increasingly tense, and soon the boss had become paranoid about the entire staff. Apparently another staff member overheard her telling someone that she intended to find reasons to fire the entire staff so she could start fresh with a new “uncorrupted” staff. This was because she thought one of the staff members (fortunately not me) was a troublemaker and was poisoning everyone else against her. It was insane; there was nothing like that going on. But she did start firing people one by one and I knew it would happen to me eventually. I dreaded going in there every day, not knowing if that day might be the day. One day I couldn’t take all the stress anymore and I quit. I knew it was unwise, as I had nothing else lined up, but I had reached a breaking point and I knew I would soon be fired anyway. Knowing that potential employers always ask why you left your last job, I knew it would be better to say that I left of my own volition than that I was fired.

In the following weeks, my former boss did indeed fire every last member of staff. In one case, she rummaged through a staff-member’s bag and found a roll of toilet paper, which she then accused her of stealing from the staff bathroom. My close friend was let go with the reason, “The length of time you have now worked here has made you overqualified for the position for which you were originally hired.”

For about three months I desperately tried to find another job, to no avail. Then some awful things happened with my roommate. I had come full circle; this was actually the same person who was my first roommate, the friend who had broken up with her boyfriend and moved out; we had since made up and moved in together again. She said she didn’t want to live alone because she had an ex-boyfriend (not the same one we had lived with) who had been violent with her and was continuing to threaten her, and she thought living with a roommate would offer some level of protection. It didn’t. She ended up getting assaulted by him and I was called to court as a witness (it turns out he had actually been on a bit of a rampage that night, so assaulting her wasn’t the only charge). But having reconciled with him before the court date, she lied in court to protect him and got angry with me for telling the truth. She moved out of our place and in with him (and eventually married him). We had been friends our whole lives but have not spoken to each other since that day. Her choice, not mine. I did not reject friends back then, no matter what, even when I probably should have.

Meanwhile, the guy I was seeing at the time was fast losing interest in me, dashing my hopes for something serious to develop there. A mutual friend he’d confided in told me he had developed feelings for someone else, so I asked him about it. I wasn’t angry (I never got angry about anything back then; it was almost like a weird deficit in my emotional repertoire), but I did want to know. He admitted it was true, but he got angry at the person who told me, which made that person angry at me. I apologized, but she said, “I don’t have time for this juvenile bullshit,” and never spoke to me again.

Emotionally, I hit rock bottom. I had tried and tried to make it on my own. I had been running on adrenaline for two years. I was exhausted, and I was getting physically sicker by the day (probably partly because I couldn’t afford to eat healthy food, or much of anything, really). I’d lost a couple friends, lost my boyfriend, had no job, my money had run out, I couldn’t afford rent on my own, and my mom had been calling me on the phone daily, begging me to move back in with her. I remember just sitting there thinking, okay, what are my options? Everything I had tried had failed, so I narrowed it down to two: I could either kill myself, or I could move back in with my mom. Killing myself would take a certain amount of courage and impetus that I just didn’t have. So I chose the latter. And it felt like a death of sorts anyway.

My Unreliable Body, Part Two

Photo by Gabriele Negri via Flickr. Used under Creative Commons.
Photo by Gabriele Negri via Flickr. Used under Creative Commons.

This is continued from My Unreliable Body, Part One.

As I mentioned in my previous post, I have been diagnosed with a number of health issues. One doctor told me I have a “bad batch of genes.” Most of my health issues do run in the family, it’s just that one person will have one thing and another person will have another, while I have everything that runs on both sides.

There’s another health issue that I haven’t spoken to a doctor about yet but that I know I have: Joint hypermobility syndrome. I have read the diagnostic criteria the doctors use, and it all fits. I have apparently had it my whole life. My mom says she first noticed this when I was a baby, when my thumb had gotten caught on something and was bent all the way backwards, but I was not showing any signs of distress. She figured I must be double jointed, and that’s what she always told me, so I never thought it was a problem, and I never attributed any of the problems I did have to my flexibility.

I don't usually share personal photos here, but this is a picture of my hand, showing my hypermobile thumb.
I don’t usually share personal photos here, but this is a picture of my hand, taken today, showing my hypermobile thumb.

The thing with my thumbs became my party trick when I got older. I can also bend my legs the wrong way at the knees and I used to be able to comfortably get my feet behind my head. Many times people have come to me in shock asking, “What are you doing with your hands? Doesn’t that hurt?” And I’ll look down and realize my fingers are bent in odd ways, which I hadn’t even noticed because it felt normal and comfortable.

Actually, odd hand positions aside, my flexibility was always the one thing about my body I was proud of, but it’s been causing me more and more problems as I get older, and I’ve only recently learned that joint hypermobility syndrome is even a thing. It figures, the one good thing about my body is just part of another syndrome. Learning about it has made a lot of things make sense though.

Sometimes my right ankle painfully pops out of joint, and my knees click and often feel loose and unstable. Three times in the last ten years I’ve fallen down while walking for absolutely no apparent reason whatsoever. My ankles or knees just give out. I think people assume I am intoxicated when this happens.

Washing dishes is getting difficult, as it’s hard to hold a heavy item without pain or without my hand just kind of giving out and dropping it. I am an avid reader, but I can no longer read hardcover books because I can’t support the weight of them with my hands. I have switched almost entirely to e-books because my e-reader is nice and light.

Interestingly, when reading up on joint hypermobility syndrome, I came across something that mentioned a possible correlation between it and autism. Anecdotally, an online friend of mine who has been diagnosed with Asperger’s also has it.

My loose, unstable joints, along with having the poor muscle tone associated with both this syndrome and my then-untreated hypothyroidism, explains why I couldn’t run as fast as other kids even before I gained weight, and also explains my inability to do the flexed arm hang in P.E. when I was a kid. It had never occurred to any of my teachers that I might have a physical problem that, through no fault of my own, was causing my lack of ability. They just assumed I wasn’t trying.

I now walk on a treadmill for exercise, but I have anxiety that the noise of it bothers the neighbours in our apartment building. I also used to work out with weights, but I don’t have the floor space for it here, and it’s become more difficult because of the issues with my hands.

Despite the fact that I have issues that cause me pain (joint pain, severe menstrual pain, recurring kidney stones, etc.) which is sometimes bad enough that I wish I had something stronger than what I can buy over the counter, I absolutely will not ask a doctor to prescribe pain killers. I am so often misunderstood and I am certain I would be mistaken for a drug-seeker. I buy Tylenol 1 when things get really bad, and that is difficult enough for me, as you have to ask a pharmacist for it and they ask what you use it for and make sure you’re not buying it too often. You’re allowed to buy one bottle a month here, and I buy it about once every six months, but I still feel horribly guilty when they quiz me.

In spite of how it might sound here, I try not to indulge in any self-pity, and I don’t talk about my physical problems much, at least not with anyone other than my husband or parents. I don’t want to get labelled a hypochondriac, and the last thing I want is any extra attention. And since most of my socialization and work experience in my adult life has been in churches, I don’t want to incur the judgment that some church goers (I’m specifying church goers here, not Christians, because church culture is something entirely different from Christianity and I believe that those who truly understand the nature and teachings of Christ are not this hard on people) feel towards people who have chronic health problems: That we lack faith, that we just want attention, that we are too negative, that we are complainers.

And then there’s the issue of unsolicited advice I mentioned in my previous post. Inevitably, if word gets out that I have various health issues, or when people have made their own observations like when they see me frequently ill at work, they start telling me what I must be doing wrong (because if someone’s ill it must be their own fault, right?) and what I should be doing or eating or taking. I’ve had people try to sell me all kinds of snake oil from their pyramid schemes and offer to balance my chakras and whatnot. (For what it’s worth, I did let the woman “balance my chakras,” and it made me feel exactly 0% better.)

Even saying something as simple as, “I don’t feel well today,” to the person who shall remain nameless led to this person snapping back at me, “Don’t say that! Words have power! You’ll bring it on yourself!” I don’t agree with that type of theology or whatever it is, but arguing with people just stresses me out and makes me sicker.

So, it’s just not worth it to talk about it, even if part of me thinks it might help people to understand why I live the way I do. Many people do not respond with understanding, so what’s the point?

If someone invites me somewhere and I’m having a bad day, pain- or fatigue- wise, depending on who it is, I’d probably rather say, “I’m sorry, I don’t want to,” than, “I’m sorry, I’m in pain today.” They might think I’m being difficult, but at least they won’t think I’m a complainer who lacks faith and wallows in negativity.

My Unreliable Body, Part One

Photo by Snugg LePup via Flickr. Used under Creative Commons. Photo has been altered (colour).
Photo by Snugg LePup via Flickr. Used under Creative Commons. Photo has been altered (colour).

I was born premature with jaundice and breathing issues. I spent my first days in an incubator. If I’d been born in another time or place I wouldn’t have survived, which might have been for the best, because my body seems unequipped for this harsh world.

During my first few months of life, I did not thrive. I lost weight instead of gaining it. My mom says after she brought me home, she felt her mothering skills were being judged by a health nurse who regularly visited to check on me because I wasn’t growing the way I was supposed to. She was told that her milk was inadequate and that she should try bottle-feeding me, but that didn’t work because I refused to drink out of a bottle. Then she was told to start feeding me solid food earlier than normal. Only then did I start gaining.

As I grew, I suppose I looked like a relatively normal kid, at least at first, and I ran around a lot outdoors on our own property with my dog and cats, but my body still couldn’t perform like other kids’ bodies could, which I learned once I started school. I remember at my first school Sports Day at age 6, I came in last in all the races. My mom was a volunteer helper and I asked her why I couldn’t run as fast as the other kids. She said she didn’t know.

Throughout my childhood, as well as the usual childhood illnesses (measles, mumps, chicken pox, pink eye, etc.), I had long bouts of bronchitis that didn’t respond to treatment. At age 6, my teeth were already so rotted I needed extensive dental surgery that I ended up being hospitalized for.

I was mostly pretty skinny, especially during my long illnesses, until I inexplicably ballooned at age 7. My mom insists I didn’t eat too much and there was no change in my diet or activity at that age, so she was baffled as to why it was happening and didn’t know how to stop it. She did get me to be even more active by buying me a bicycle and making me go on long bike rides, buying me a trampoline (which I loved), and enrolling me in gymnastics (which I hated), none of which made a difference. Again, my mom felt people were judging her, this time because I was gaining weight, when before it had been because I wasn’t.

Meanwhile, I was oblivious to what I looked like until boys at school started teasing me for being fat. I was finding school overstimulating enough without all that added to it.

Even before I’d started gaining weight, P.E. class was an absolute nightmare for me and in later grades consistently brought down my GPA. I was always picked last for teams, and for good reason. Not only was I physically slow, but my sensory issues (which I was unable to explain because at that time I didn’t realize that not everyone experiences the world the way I do) made participating in team sports difficult, as I could not quickly process what was going on to make instant decisions about courses of action. If a ball came towards me, I froze, unsure what to do. Then my teammates would yell at me that I sucked and I was a loser, which only increased the sensory overload I was feeling and added performance anxiety into the mix. Afterwards, I would think about it and know what I should have done, but in the moment, everything was a blur, there wasn’t time to process or think, and without having time I was useless.

Also, during our annual fitness tests, there were some things I was simply unable to do. One in particular was the flexed arm hang. As soon as they pulled the chair out from under me, despite my best efforts, I went down. I could not stay up for even one second. (I had no idea why at the time, but I will shed some light on it in my next post.) I was accused of not trying, and I often got “needs improvement” for effort on my report cards, one of many examples of how I was misunderstood. I truly was trying my best, but my body wouldn’t cooperate. Some of my P.E. teachers were quite horrible to me as a result.

I entered puberty early, at age 10. I immediately started having problems with my cycles and grew thick, dark facial hair. Again, I was utterly oblivious to this change until my mom told me and taught me how to shave daily. She took me to doctors about these issues, but they were of no help.

In my teens, I started having nausea in the mornings, which has continued to this day. I call it my morning sickness, but I have never been pregnant.

In my adulthood I have been diagnosed with polycystic ovary syndrome and hypothyroidism, both of which cause weight gain and fatigue, and both of which I’ve had symptoms of since childhood. I also have asthma, gastrointestinal issues, unexplained bouts of hives, eczema, psoriasis, severe pain with my menstrual periods (and sometimes similar pain at other times of the month), vomiting about twice a week, episodes of hypoglycemia, bouts of kidney stones (which is the worst pain I’ve ever felt in my life), and crippling daily fatigue.

Despite my efforts to eat a healthy diet (green smoothie, anyone?) — which I need to do anyway because of my PCOS and my tendency to gain weight — as well as having taken a much-needed course in stress management, I also have an inexplicably weak immune system. Especially when I’m in the workforce, I get every virus that goes around. At those times, a month doesn’t go by without me having a bad cold or worse. Since I can’t call in sick for a week or more every month, as long as I’m able to drag myself out of bed, I work anyway, so I can save my sick days for the days when I can’t drag myself out of bed. But then I get criticized for showing up sick and potentially passing the virus on to others. I don’t know what else I can do; I agree that it’s best to stay home when you have a virus, and it’s not like I enjoy working while sick, but I’m sick so much of the time that having a job at all means working while sick. That’s just the way it is.

I don’t get viruses as often when I don’t have a job, which is probably due to a combination of less exposure and being less run down from stress and lack of sleep. I tend not to sleep well when I have a job (I lie awake thinking about things that happened at work, and when I do sleep I have nightmares about work), which frustratingly is when I need adequate sleep the most.

Because of my illnesses, fatigue, spacing out, social issues, sensory issues, stress levels, and meltdowns, when I can get away with not having a job (meaning when my husband is earning enough for us to get by), I happily stay home. I like being at home, and my husband likes it when I’m at home, but unfortunately, I take a lot of flack from others who don’t understand or approve, and it’s hard to explain myself without just sounding like a lazy hypochondriac. The worst part is when people think I must feel entitled. That is not the case at all. I don’t think I somehow deserve to be looked after. That’s why in the past I did keep trying time and again. But in one way or another I crashed and burned every time.

To be continued in my next post.

P.S. Please, I respectfully request that no one offer me any unsolicited advice about what I should or shouldn’t be doing, what I should or shouldn’t be eating, what medications I should or shouldn’t be taking, or what home remedies I should or shouldn’t be trying. I’ve heard it all, read it all, tried it all (all that isn’t completely idiotic and that I have been physically and financially capable of trying, at least).