Tag Archives: Ehlers-Danlos Syndrome

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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When you know someone who can’t eat

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Alright friends, I have one last post for Feeding Tube Awareness Week! My previous two posts this week talked about what it’s like when you can’t eat, and today I’m talking about what to do when you know someone who can’t eat.

To recap, as many of us with feeding tubes know, we live in a very food-centric society, a fact that becomes painfully obvious when all of a sudden you find yourself unable to eat like everyone else. Think about it — family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing. As a society, our social lives are built around food.

For those of us who are unable to eat, we don’t want to miss out on everything, but it can also be really awkward to be surrounded by food all the time. And for those of you who are able to eat, it can be awkward to know how to include us. There are many different reasons for someone to need a feeding tube or be on TPN, so it’s not a one-size-fits-all situation when it comes to having a friend or loved one who is unable to eat, but here are some basic guidelines on how to approach it.

For starters, whenever possible, try to hang out with us in a way that doesn’t revolve around food. Many of us with feeding tubes are dealing with chronic illnesses that leave us short on energy, so low-key activities are great places to start. Think movie afternoons, coloring parties and craft sessions. We also likely spend a lot of time going to appointments and running boring medical errands, but your company can make these tasks a little more exciting.

As for the rest of the time when food is a focus?

Respect our restrictions. Sometimes “just one bite” really can be a problem. If we say “no thanks” or turn down your offer, it’s not personal, it’s self-protective. Please don’t keep encouraging us to try something, because we might feel pressured to please you but then end up suffering consequences later.

Keep inviting us. Acknowledge that we might not want to join in, and try not to take it personally if that’s the case, but please keep giving us the option. Not being able to eat while everyone around us eats is hard, but missing out and not being invited at all is hard, too.

Shift the focus. When possible, create a situation where food isn’t the only focus. For example, if it’s warm enough outside, eat dinner on the deck so we can enjoy nature and have lots to look at rather than not knowing where to look while everyone else at the table is eating.

Let us take the lead. Don’t make it a requirement that we sit at the table while everyone is eating, and if we choose to leave the room, let us be. We may need to leave the room if the smells are strong or our symptoms are acting up, but we also may need to leave the room if we’re having a bad “I really miss food” week and we just can’t stand to watch you eat our favorite meal.

Enjoy your food. And don’t feel bad for doing so! In fact, we want you to enjoy what you’re eating because we would give anything to be able to eat it, too. There’s no need to apologize for enjoying your food…please don’t take a taste, look at us sympathetically and then say “I’m sorry, but this is so delicious!” All that does is draw attention to the fact that we’re not eating and remind us that we’re missing out. Feel free to exclaim over your food all you want, but the apology isn’t necessary.

Resist the Q and A. Avoid questions such as, “Is this just torture for you?” or, “Oh man, I would just die if I couldn’t eat! How do you do it?” while you’re eating in front of us. One, it likely is slightly torturous. And two, if it’s not torturous, that’s because we’ve managed to focus on something other than food, and we don’t need you to keep reminding us of it.

Our illnesses are not enviable as weight loss strategies. Joking that you want our condition so you won’t eat so much or so you can lose weight is not funny, it’s insensitive. Usually when people say things like this they are trying to make us feel better, but it usually just makes us feel misunderstood.

Appreciate. Appreciate your food. Appreciate your body. Your body can take the food you eat, digest it and turn it into fuel, all without making you sick and miserable. Do you know how incredible that is?! Now and again, take a second to recognize how totally cool it is that your body does what it’s supposed to do.

Basically just carry on as usual and don’t draw attention to the fact that we’re not able to eat, because I can guarantee you, we are well aware of it already! Asking questions and trying to understand how it all works and how it all feels is fine, and honestly appreciated much of the time, just try and do so at a time and place when it won’t single us out as the only one not eating.

One last thing! Thanks for loving us. Thanks for reading this. Thanks for trying to understand us a little better. It means more than you know.

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When you can’t eat part two: the feels

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Whenever someone asks me a question related to what it’s like not being able to eat, I usually shrug and say, “I don’t know, I’m just used to it,” and then change the subject.

I am used to it, but that doesn’t mean I like it or that I’m always okay with it. Not being able to eat can be really tough, but trying to put it into words is also really tough so a one sentence reply is just easier. However, I’m going to give it a go, here. Yesterday I covered the facts. The logistics. I talked about how it all works, not being able to eat. Time to delve deeper now. Today, let’s talk about how it feels.

First of all, I want to eat. I ate normally for 18 years so I know what things taste like and I have favourite foods. I get cravings and when I watch people eat I want to be eating, too. I know I’m part medical device at this point in time, but I’m still human, and as a human I’m hardwired to eat in order to survive. Not being able to is frustrating and sad, and that part never goes away, it just becomes part of your normal.

I cycle through different this-is-what-not-eating-feels-like phases.

There are times when it honestly does not bother me, when that frustration and sadness are easy to forget about. I sip on my ginger ale, I eat a lifesaver here and there, and I don’t really give it a second thought.

Then there are times when the absence of food in my life is impossible to ignore. Imagine going on a roller coaster that’s really fun at first but then you start to feel sick and you just want to it be over. Afterward you think “yikes, I don’t want to do that again.” Except everyone else had so much fun and wants to go again. You still feel sick and don’t want to feel worse, but you also don’t want to miss out on the fun, so you go with them once more. This time you have an even worse experience and so you decide you just cannot ride that roller coaster anymore. But everyone else is still having so much fun and they decide to ride it again. And again. And again. And you just have to sit there watching and waiting for them to stop riding the roller coaster. Yes, you are glad they are having a great time, but you feel so left out and it seems so unfair how something that is supposed to be easy and fun makes you feel so terrible. You hate your body for getting in the way of your ability to enjoy life. You’re stuck there just watching and waiting for everyone to get tired of that roller coaster, but they never do. Sometimes not being able to eat is like that, and during these ‘roller coaster phases’ I often find myself wishing I hadn’t gone to the theme park at all.

And then there are the in-between times. During these times I feel somewhat removed from it all, kind of like when you drive someone to or from the airport. You might think, “Oh I wish I was the one going away,” but it doesn’t really phase you that you’re not. Overall you’re just happy for your friend or family member who gets to go on an adventure. Except the thing is, when all you ever do is drive people to the airport without ever actually getting to take a vacation yourself it can be hard not to feel bitter. Lots of the time I don’t mind driving people to the airport, but I do get disheartened when I realize that I can go to the airport all I want yet I can’t ever actually get on a plane. Still, when I’m in this so-called ‘airport phase’ being part of the experience in some way, even if it’s just being along for the ride, is usually better than not being part of it at all.

The thing is, though, I wish I didn’t have to choose. I wish it didn’t come down to driving people to the airport or not spending time with them at all. I wish it didn’t have to make the choice to gather with everyone and watch them eat, or to not be part of the gathering at all.

But I do. I do have to make that choice because our social lives are built around food.

It’s one of those things you don’t realize until you’re on the other side, but think about it. Family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing.

Sure, I can be present for all of that, but it’s not the same as being part of it. I’m watching, not doing.

As a society we gather together around food. We celebrate around food. We sit around the table or cozy up with our coffee and tell stories, recount memories, and discuss topics of all different depths. If I want to be part of that then I have to put up with being around other people eating while I fight against the basic human instinct to do the same. And that sucks. I hate being the only one not eating, but I also hate missing out on anything. I don’t want to watch my friends and family eat food that I wish I could eat, but I do want to spend time with them.

It’s an impossible situation.

RCH TPN (3)I make a conscious and consistent effort not to think or talk about this too much for two reasons. One, I don’t want anyone to feel like they can’t eat in front of me or feel bad when they do. As hard as it is not being able to enjoy food like everyone else, it’s even worse knowing that they are enjoying it a little bit less because of me. I already feel a lot of guilt knowing how my health problems spill over into other people’s lives so the very last thing I want is for those people to have to adjust their lives for my sake even further. I don’t expect people to avoid eating in front of me and I think it would be unreasonable of me to do so. People gotta eat! I have to eat, too, I just happen to do so via my veins.

The second reason is that thinking about this all the time doesn’t help matters or change anything. Some days are harder than others, and some days the constant fight wears me down, but at the end of the day I try to be very accepting and matter of fact about it all. I can’t eat and that’s just the way it is. I can’t sing either. Or whistle. I let myself feel sad when I need to, I let myself lament sometimes that life isn’t fair, I stay away when I need to, and then I just do my best to focus my energy elsewhere. Life is hard enough without constantly thinking about how hard it is.

Now here’s where this sad posts gets happy. I don’t have food, but I do have people. Not only do I have awesome friends who also can’t eat and who understand what it’s like, but my friends and family who can eat also happen to be awesome. And not only do they understand when I don’t want to sit at the table with them, but they are just so delightful to spend time with that they make sitting at the table worth it. I would give almost anything to be able to eat, but I wouldn’t give up the people in my life.

Sure, I wish I lived in a world where I didn’t have to choose between food and people, or rather between being around people while they eat food and not being around them at all, but that’s not how it works. I do have to make that decision. When I lay it out like that, though, it doesn’t seem quite as impossible a choice to make. People with food or no people at all? People win.

I may not be able to eat, but I do have a reason to be at the table, and for that I am grateful.

Reason to go to the table

Sister, brother-in-law and brother. My all time favourite reasons for being at the table!