Tag Archives: reality

Life, reality and fairy dust

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I get a fair amount of emails and messages from people wondering what my secret is, where I buy my fairy dust. They want to know how I manage to be bright and cheery when things in my life are on the stormy side.

Ha!

You want to know how I always stay so positive?

I don’t.

You guys, there is a reason I haven’t written a new post in almost a month now, and it’s not because I’ve been off gallivanting. It’s because I’ve been in a bad mood for pretty much three weeks straight. It’s because I’ve had nothing to write beyond “I’m really bummed out and everything sucks” and I know I can keep it real here, but I like to think I’ve set a higher standard on this page than a seven word post.

I’ve just been frustrated lately. Discouraged. Defeated. And did I mention frustrated?

It started when I found out that I’m looking at a 12 to 16 month wait for a follow up appointment that was supposed to happen last fall, plus another referral that was supposed to be put through in December never actually went through. Next I learned my extended health won’t cover something because I have Ehlers-Danlos Syndrome and not arthritis. After that the government deducted from my disability payment for no clear reason. Then my car died beyond repair. There is also the issue of my most expensive medication no longer being covered and even after four hours on the phone and six retellings of the whole situation, it’s still up in the air.

Plus of course there are some new symptoms, some worsening of other symptoms and some more baffled looks from my doctors.

And I’m really struggling lately not to feel angry and let down by the healthcare system here. I hate when I feel like this because I really do believe in the idea of universal healthcare, but it’s hard when people in other countries, and actually even in other provinces across this country, don’t seem to have to fight as much and wait as long as you do. It’s even harder when they have access to services and treatments that are unavailable to you altogether.

Life has just been a little too much lately and I haven’t had the energy for anything extra so I’ve kind of been hiding out.

It’s called turtle time. At least it is now. Patent pending.

And there’s my negative story for you.

Here’s where it starts to turn around.

Before I continue, you should probably know that I have this random interest in random holidays. It’s not uncommon for me to text someone along the lines of, “Happy Day After New Year’s Day (observed – New Zealand)!” or, “FYI it’s Showa Day in Japan today.” I love learning what all these different days are about and how they came to be.

A while back I was texting with my bestie about upcoming Earth Day, except that Earth Day was auto-corrected to warty day. Kind of gross, sure, but we thought this was hilarious and so then of course we said we will have to recognize warty day, too. When Holly asked me when it should be I randomly yet officially picked May 5. I later realized this was already Cinco de Mayo (duh) and less obviously also Children’s Day in Japan, but official is official.

By the way guys, we know we’re really weird. Just go with it.

Yesterday morning, I texted Holly to wish her a Happy Warty Day, which of course is not a significant day at all except for the fact that it made us laugh. I asked her what her plans were and if we could celebrate. Thursday is often her only day off all week, and the only reason she never works on Thursday is because she volunteers overnight at the crisis line, so when she told me she also had an appointment yesterday afternoon but could pop over after, I almost said no.

All of my “don’t be a hassle on anyone” chronic illness instincts told me to just say never mind, but my “I’m having a tough time” human instincts told me that I really just needed my best friend to make things better. Remembering that my focus on the word branch this year includes reaching out even when I feel like hiding, I said yes.

IMG_4860So Holly drove over to my house, and since we both adore baby geese, we popped Julio (my wheelchair) into her 1998 minivan (just to give you an idea of how cool we really are), and we drove to a nearby park to see the goslings. The scenery, weather and company were perfect. Plus the goslings were fluffy, clumsy and adorable. It was the most wonderful Warty Day there ever was. It was also the only Warty Day there ever was, but still.

I don’t have a magic answer for how to stay positive, but this story is the closest thing I have to some fairy dust for you right now.

I am most certainly not full of sunshine all the time, not even close. Honestly, I don’t even think that’s healthy, let alone possible. It’s not real, and forcing it gets in the way of genuinely living it. I think you have to feel it all, the good and the bad, and I think that hope is found in spite of the bad, not by pretending it doesn’t exist.

IMG_4858The bad exists. I know because I live through it and so do you. Everyone does. We have no say in that. But I think maybe we’re able to live through it because of what we live for, and that we have some say in.

I live for random made up holidays that come into being because of texting typos, no matter how dermatologically unappealing their names are. I live for gushing over baby geese. I live for hanging out with Holly and Julio, and I live for delighting over the realization that even though I didn’t plan it, their names sound superb together.

I live for all sorts of tiny little things, and when I need to, I let these tiny little things become everything.

It’s not a perfect plan, but it’s all I’ve got for now. There is no perfect plan. There’s just life. Life and reality. And tiny little things that turn into bits of fairy dust.

It’s not perfect, but I’m hoping it’s enough anyway.

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It’s not you, it’s my illness

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I wrote this piece a couple of weeks ago and then since it seemed so personal I was hesitant about posting it. Instead, I sent it to The Mighty, because naturally when you’re feeling a bit shy the logical thing to do is expose yourself to an even wider audience. I know it seems a bit counter intuitive, but it felt more anonymous that way. The response I received, though, made it clear that I’m not the only one who feels this way, and since I happen to be feeling this way today, I’ve decided to now share it here.

 

Loving someone with a chronic illness comes with some extra challenges. Illness is unpredictable, and the important people in our lives understand this. They learn to be flexible and accommodating and we love them for it.

While it might be easy to understand why we’re not always up to going out or carrying on conversations for hours at a time, it’s harder to understand why we might not want your company at all. It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.

Those of us with chronic illnesses are used to carrying on with life while feeling unwell. We have to, because the unwell part isn’t going anywhere.

You will see me when I don’t feel well, otherwise you would never see me. Sometimes when you see me I’ll be feeling decent enough to be cheerful and bubbly, and I’ll smile in a way that brightens up my whole face. I’ll be able to crack jokes and be engaged in conversation. Other times I’ll seem tired. I’ll still smile, but if you’re watching closely my eyes will give away my fatigue, and you might notice me sitting down or leaning against the nearest surface. And sometimes when you see me I won’t be able to fake it very well. You’ll hear me run out of air while I’m talking and our conversation might be disjointed because I’m so overwhelmed by how sick I’m feeling that I have no idea what you just said. I’ll be trying really hard to hold still so as not to draw attention to myself, but I’ll become increasingly fidgety.

And for the most part, that’s the worst you’ll see me. But it doesn’t end there. You don’t see it because I don’t let you, but it gets worse.

Sometimes I’m too nauseous to sputter out more than a few words, and I sit with my trash basket in my lap because I can’t stop retching. Sometimes I’m so tired I feel like I can’t even hold my own head up. Sometimes I’m scared to stand up or move at all because my head feels so disconnected from the rest of my body that I don’t feel safe on my own two feet. And sometimes I can’t stay still, fidgeting and squirming non-stop because I just feel so sick that I cannot even handle being in my body right then. There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.

You won’t see me like that because those are the times when I try to hide away from the real world, isolating myself behind a closed door while I wait it out. Very few people see me like that because I don’t want them around. I don’t even want my mother, the person I trust most in this world, to be around when I feel like that. At times it is unavoidable if I get caught off guard or if I’m too sick to handle it myself, but I do what I can to keep that side of my illness hidden.

This might sound backwards to you. You might think that times like these are when you want people by your side the most. But no. I don’t want you to see me like that.

Part of that is for your sake. I don’t want you to feel uncomfortable, and I don’t know that it’s possible to watch another person feel so terrible without feeling uncomfortable. In the midst of the awfulness I will be thinking about how horrible it is that my illness is spilling over into your life. I know that seeing me so sick will make you worry and feel badly for me and I will feel the need to protect you from that. I will want to pretend that I’m OK for you, but I won’t be able to because in that moment I’m not OK. I will be OK in time, and I will be able to tell you that, but having to tell you that takes focus and energy, every ounce of which I need to just get through it.

And part of it is for my sake. Feeling so unwell to the point of just not even knowing how to handle being in your body anymore is a very personal thing. It makes you feel incredibly vulnerable. Exposed. Helpless. Raw. It feels like you are naked and people are staring at you but there is nothing around you can use to cover up. In that moment, your body is the one in control, not you. And that’s scary. Feeling that way is hard enough; knowing you can see me feeling that way is too much.

So I don’t always want your company, and at times I decline your help. I don’t always let you see my face or hear my voice, and it has nothing to do with you and everything to do with me and the way my illness sometimes consumes me. I promise I will gladly accept both your company and your help when I’m ready. I don’t need to be at my best, but I do need to not be at my worst.

There’s one last thing we should talk about. Even when I don’t want you there, it helps to know you will be there when I’m ready. And I love you for that. Thank you for being within reach.

The mystery of the missing hair

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So my hair is falling out. And after weeks of feeling insulted that my hair just didn’t want to hang out on my head anymore I think I’ve solved the mystery.

It started about a month ago when I thought there was a dead rodent in my shower before I realized that the small animal was not an animal at all but a mass of hair that had once been on my head. I figured that I must have just forgotten to brush my hair for a few days, but then I noticed that my brush was unusually full of hair, too. And then the small animals in the shower grew in size, I started having to clean my brush every day and all my clothes were covered in hair. I can’t run my fingers through my hair without losing at least 15 to 20 more strands.

Oh and the most annoying part? All this fallen hair gets tangled up with my yarn and then crocheted into whatever I’m working on so I’m constantly ripping out stitches. I don’t have random bald patches on my head or anything; it’s orderly and evenly-distributed hair loss and I do appreciate it taking that courtesy. Plus I had a surplus of hair to begin with…

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So even though my ponytail is about half as thick as it was a mere month ago…

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There is a decent amount left. But still, it’s a rather concerning problem. I was lightheartedly considering the fact that maybe my winter coat was just coming in, you know like dogs and horses, while seriously considering making an appointment with my doctor and getting ready for a long process of trial and error trying to figure out which medication was causing the hair loss.

And in the meantime, I was troubleshooting the problem with a friend. No malnourishment. Iron is going up and anemia is improving. Thyroid was checked last month. A couple of new meds in the last few weeks but nothing around the time that this started. Mystery! My friend then suggested that it could be somehow related to when I was really sick a few months ago or just a cumulative effect of the stress of being more unwell than usual the last few months.

Now before I get to my point I’m going to take you off the edge of your seats and solve the mystery for you…or at least my theory about why this is happening. I did some googling on the structure and life cycle of hair (and learned some very fun ‘fun facts’ that I won’t bore you with now but will save for the next time we’re at a party together and the conversation needs a little pick-me-up) and at any given time about 5 to 15% of the hairs on your scalp are in ‘telogen’ or resting phase, and then about one to two months later when the resting phase is over and a new hair starts to grow in its place the hair falls out. I also learned that big physical and mental stressors, such as surgery or death of a loved one, can cause a large percentage of hair to enter telogen prematurely. And then I learned that one of these so-called physical stressors is high fever!

Ah ha! Two months ago I had a high fever for several days with almost no relief, and then once it came down I continued to spike temps on and off for another few days. So my theory (my speculative, I-read-about-this-on-the-internet theory) is that the fever I had two months ago is why all my hair is falling out now. Apparently you can lose up to 70% of your hair this way! Luckily, though, it should fully recover within a year.

Fascinating stuff, right?

Alright, so now time to get to my point.

Let’s backtrack to when I was troubleshooting with my friend. Do you know what I thought when they suggested it could have something to do with my mystery illness from a few months back? I thought oh but I was only in the hospital for 10 days! Only…because 10 days this fall is nothing compared to the 37 days last fall so I had somewhat disregarded it.

And do you know what I thought when they pointed out that I’ve been more unwell than usual lately? I thought nu-uh that’s not true, is it? At the exact moment of that conversation I felt okay so I had to stop and think about it before realizing that oh yeah…my health took a dip over the summer and hasn’t managed to fully bounce back yet.

It’s hard to notice regression when you’re in the middle of it. I had a bad week, and then another, and then another, and now I’m looking back four, five months and realizing that I’m not doing as well now as I was then. When every day you just feel blah, all the days kind of blur together and blah stops being blah and instead becomes the norm.

But the opposite is also true! It’s hard to notice progress when you’re in the middle of it. And it’s easy to become less conscious and appreciative of the good things when you’re surrounded by them. I forget how awesome my family and friends are until I hear stories from people without a support system.  I don’t always realize how great my doctors are until I come across one I don’t like.

It works both ways. So I’m going to try and be a little more mindful, acknowledging the toll that the bad stuff takes and recognizing that the good stuff is good even before the bad stuff comes along and points it out to me.

And in addition to being more mindful I’m also going to get my hair cut. Small animals in the shower shall be extinct!

Ohhhhhmmmm.