two women chatting in a cafe over coffee

I do it. I’m excited, and slightly embarrassed I wore my hole-ridden sweats and my slippers, as I meet up with an old friend at the grocery store. Before we know it, a firm date has been scheduled and the word “yes” comes out instead of no.

Deep down inside I know I can’t go to Megan’s Skin Pamper Party, where 30 people will be gathered to drink things I can’t, eat food I shouldn’t and… socialize. Ugh. It’s an hour drive from my house and probably three hours of superficial meet and greets to spend money I don’t have on things I don’t need. This is socially acceptable, I tell myself. I must go or people will forget about me, I more honestly reflect. That’s when I stop and realize that’s the real reason I have a hard time saying no. People will forget me. It seems terrifying.

 

I play it in my head. First I say no, then I say no again and soon they stop asking all together. I kind of want to take a deep sigh of relief but I’m actually more terrified of being forgotten.

I want to have friends, but running into them leaves me panic-stricken when we’re both desperately trying to play catch-up and I get caught up in the moment and say what I would ideally like.

I would like to say yes and mean it.

I would like to know how I’m feeling in three weeks.

I would like to go to everything I’m invited to and have a blast.

That’s not my reality.

What I wish I’d say when I run into an old friend: “It’s great to see you and have a few minutes to catch up. I don’t know if I can make your party but I’ll let you know as the date approaches,” or “No, I can’t attend that but it’s really been great running into you” or even “I would really like to catch up with you one-on-one sometime. Let’s keep in touch to see if we can arrange a lunch someday,” or lastly, “I can’t attend this time but please keep me in mind for the next party.”

If I practice saying those phrases then I avoid locking myself into a situation where I’m committing to an event I’m likely not going to attend.

I think we all want to be invited to the party, even if we can’t go. Going has no relevance to how happy it makes me just being invited.

So, the real reason I have a hard time saying no is that I don’t want to be forgotten. Over here in my corner, my little slice of life, I still have a deep human desire to be included and wanted. So friends, please don’t forget us, no matter how many times we say “no.”

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Thinkstock photo via JohanJK.

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I used to follow a pretty rigid schedule when I worked full-time, cared for my kids and attended college at night, in my own home. I was able to write events on a calendar and attend them, as planned. Ah, that was quite the luxury. I just didn’t know it yet. I didn’t know that one day I would no longer have that luxury. Ehlers-Danlos syndrome took that from me.

 

Now, I plan my day moment to moment. It used to be day by day but I’m now living by the seat of my pants. It’s an absolute nightmare for someone like me who likes being in control. Now I’m sprawled out – face flat on the floor, almost literally, with no sense of what it means to have a schedule, something I never used to view as a luxury. Oh, but it was. It was the most luxurious thing I had.

Back when I was planning my weekdays, weekends and jammed my schedule full of chores, sports and everything else that life and motherhood demands, I found scheduling a chore and a ball-and-chain of sorts. I got angry at it and cursed it. If I only knew then how lucky I was to have the ability to not only follow a schedule, but follow through, then maybe I would have appreciated its perfect way of my accomplishment of commitments.

This week I was reminded of how much I’ve been creating additional anxiety by still trying to adhere to a schedule. I guess it’s hard-wired, even after five years since leaving my corporate job.

My husband and a wonderful friend were there to remind me that although I can complete the tasks that make me feel better, more positive and are sometimes crucial, they don’t need to be so rigid.

Instead of a schedule, I created a simple checklist that contains only the most important tasks of each day. The tasks must seem all too simple to the lucky healthy humans who could slay my task list by 10 a.m., but their life isn’t my concern. To me it’s a challenge. I will stop holding myself hostage to an unrealistic schedule – the very reason I was forced to stop working.

daily to do task list

A weight was lifted when I changed my approach. Today, the first day of my journey, I completed each task without the additional stress of daunting and unrealistic time constraints. I also gave myself the ability to abandon a task if needed, without guilt. For those days my body needs rest, listening to it is equally as important.

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I have hypermobile Ehlers-Danlos syndrome, which is a genetic connective tissue disorder. It often leads to a ton of secondary problems.

For those who are healthy and carefree, you take so many things for granted that I can’t anymore. Here are a few.

1. Breathing. Now, isn’t that a given? We live, thus we breathe (or the other way around?). Every being that is alive breathes, without even thinking about it. Don’t we all?

No. My breathing is often shallow, and breathing causes me pain. Mostly because of a condition called costochondritis, an inflammation of the cartilage between sternum and ribs.

2. Eating. Once again, people eat to stay alive, don’t they? Well, not all of us. I have friends who need to use a feeding tube. I, for one, have a very strict diet, trying to accomodate two different problems: gastroparesis (low fiber) and low blood volume (high sodium and lots of fluids). I can’t eat more than a cup’s worth at a time. Eating usually leads to stomach pain or nausea, sometimes to throwing up. At times, I can be weeks on a liquid diet, without being able to eat actual food.

3. Sleeping. Everybody sleeps, and sleep means feeling rested, right? Actually, the more I sleep, the more pain I’m in. Thanks to my hypermobility, I dislocate a shoulder or sprain an ankle pretty much every night. I barely remember what waking up refreshed means. And thanks to my small fiber neuropathy and arthrosis, some nights I’m in too much pain to sleep at all.

4. Standing up. Do you realize how lucky you are to just get up and stand? To be able to wait in line at the amusement park or at the grocery store? With postural orthostatic tachycardia syndrome (POTS), I’m at risk of fainting if I stand up too long. An unexpected line at the cashier can be dangerous.

5. Walking. Now, if there’s something people do without thinking about it, that’s it! Get up and go, right? Walking hurts me a lot, and the more I walk the more the pain grows. I tore ligaments under my left foot just by walking, and I have arthrosis in most joints. It happens that my legs just go weak, too. I sometimes use a cane, crutches, a rollator or my wheelchair.

6. Showering. It’s part of the routine, quickly out of the way… but not for me. Because of POTS, I need to plan the shower, I often need to use a shower chair, and it always leaves me weak for hours.

7. Cooking. You might see it as a chore, or love it like I do, but I’m guessing you don’t actually think about it. Many days I can’t cook at all. Sometimes, I start a recipe, and I get too weak to finish. There are also many things I can’t do anymore in a kitchen. Cutting, stirring, lifting… all because of injuries in wrists, dislocation-prone fingers and the likes.

The writer standing in a field of flowers, with her wheelchair in front of her.

8. Working. Everybody needs to work to make a living. But I often can’t. When I can, it has to be from home, and I can’t do a lot. Which is why I’m a freelance editor and translator.

Talking on the phone. Using the computer. Playing video games. Driving.

None of those seem difficult. I mean, what’s more simple than casually scrolling on your smartphone? Well, my arms and hands cramp up, they become sore very quickly, and it’s basically torture.

I could go on, but I think you get the drift.

I used to take all of these for granted, before my condition deteriorated. I knew pain and feeling weak, but it was in no way comparable to now. So I know how easy and normal it is to take the basic actions in life for granted.

I now also know how they shouldn’t be. Enjoy what you can do and take care of yourself!

Annie-Danielle Grenier blogs in French at Ma Vie De Zebra.

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Being sick is rough. It is all day, every single day. Sure, some days are better than others. I even have brief moments where I temporarily almost forget I’m sick. Then, inevitably, reality hits with a vengeance. I have one child who doesn’t have Ehlers-Danlos syndrome and one child who does. Duty calls. If I have a particularly rough time, life continues. The world continues to turn. Sports practices, homeschooling, nursing, caring, comforting, Boy Scouts, homework, housework, bills, groceries, quality time, and everything goes on. My obligations and life did not get the memo.

 

I really don’t feel well. In fact, most of the time, I feel practically wretched. There are days I drag myself into the shower, drag myself to brush my hair, hold onto walls to keep from falling. There are days I must tell my sons that the walk at the park just cannot happen that day. There are so many days that seem to never end, brutal days full of exhaustion, pain and struggling.

There are also bright days. There are days I find myself laughing so hard I can barely breathe, despite feeling like I could keel over. There are days I amaze myself by simply carrying out the duties for the day successfully. There are days I look into my children’s faces and see enough innocence and hope to carry me through. There are days when I truly fool everyone around me.

In all, despite there being so much struggle, I wouldn’t change it for the world. I cherish each moment, because I know how hard life can be. I do see the other side, the sun through the storm. I see the same beautiful struggles and triumphs in my sons and in what my family endures.

It is a choice to see the good. It isn’t always an easy choice to make, but it is certainly remarkable to see.

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Thinkstock photo via AndrewSoundarajan.


Preparing for the birth of my boys, I read all sorts of conflicting articles about what was best for my babies. Some typical topics
included breastfeeding versus bottle feeding, cry-it-out versus attachment parenting, and organic food versus non-organic. I wasn’t prepared for the shear amount of difficult decisions or for the upcoming criticisms of whatever I chose, but it was clear I wasn’t the only mother having to make those choices. All mothers were.

However, when my youngest son became chronically ill and diagnosed with Ehlers-Danlos Syndrome, there was a loneliness in the decisions that I had to make. It was completely overwhelming.

When should I take him to a new specialist? Are the medications sufficient? Will we financially be able to cope with the medical bills? What about side-effects? Could he tolerate another invasive procedure, surgery or test? Does this accommodate his special diet? When will he use a mobility aid? Should I let him play on the park playground? How do I teach him about himself and how do I teach others? Is he having a quality childhood? When do I worry? When do I not worry?

 

As if these never ending decisions aren’t enough to handle, the unsolicited advice and criticisms took on a life of their own. I would get personal messages about what type of new and improved supplement my young son should be taking. I was told he shouldn’t do this physical activity, but he needs plenty of exercise. I was sent many diets and programs. It was a solid trail of “you should” or “you shouldn’t” or “why don’t you.”

I knew the “solicitors” weren’t meaning harm. I knew that, but what I really wanted was a hug, or reassurance, or someone to go to lunch with to take my mind away from it all. I think sometimes this “advice” originates from others wanting to do something to help. Friends and loved ones can feel helpless and want to do something, anything.

Well, here is something you can do: listen, ask questions and be present.

Please don’t run or retreat, and don’t offer unsolicited advice. As mothers, we do the very best we can for our children. It isn’t easy to have a sick child. There isn’t a handbook or golden rule — as much as I sometimes wish there were.

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Thinkstock image by DragonImages


Twenty year old me was the life of the party. Yeah, I had a 2 year old son at home, so most of my time was spent working, taking care of him and school. However, those rare moments out were spectacular. I owned the dance floor and easily took full advantage of a girl’s night out. I was vibrant and boundless energy poured out of me like a seasoned rockstar. I’d grab a chance to jump on stage and dance for hours, letting the vibration of music shake my bones until I couldn’t stand any longer.

As 20 turned to 30, those nights grew fewer and farther in between. I noticed a change in my tolerance for being in a crowded place, the sounds were too loud and the smoke made my voice raspy. I was in denial that I didn’t quite enjoy it any longer. I did it though, because that’s how my friends knew me and that’s how we got together. We would bar and club hop, and dance our asses off. I’d pay the brutal price for the next week – but heck, it was worth it!

At 35, I may as well have turned 70. Entering a club felt like torture. The change in those five years were horrifying. All my prior manageable and hide-able symptoms were on display for all to see. Well, not physically, as I still looked like I was in my 20s. Inside, however, my body was rebelling from years of over-use, a bad diet and an un-nurtured rare disorder. I had just announced my health journey with my friends, but they didn’t grasp it since I still looked healthy.

I felt obligated to attend everything I was invited to, even if that meant putting myself in a place where it would take weeks to recover. At first my friends were disappointed and even upset, which crushed me. Then I realized something important. If they cared enough about me then they would realize that I’m not 20 year old me anymore. I won’t apologize for it again and I certainly won’t apologize for saying no.

The writer sitting on a couch, making the "peace" sign.

When I can’t or don’t want to do something, I will simply say, “No thanks, not this time. Have a great time though!” When you deal with pain on a daily basis, a magical thing happens – your time becomes so precious. I’ll happily say yes to the things that I can do, knowing I may need to cancel, but I won’t apologize for it.

I can’t control my Ehlers-Danlos syndrome or related illnesses and flares, so by saying I’m sorry shows that I feel like I’m at fault and I’m not. I didn’t choose this illness, but I can choose to say no when my body needs me to.

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Thinkstock Image By: Gala2205

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