I Have a Chronic Illness and I Am a Mom

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Some people say having a baby when you have a chronic disease is selfish. I have seen this comment being made on many occasions. Facebook gives people the platform to judge others who they don’t know. Recently, I was on a Facebook group where someone asked a genuine question about having a baby. Of course this person asking was worried about passing her condition on to her children. That’s normal. On reading through the comments on the post, I saw more than once people stating it was selfish to bring a baby into the world. With the idea that you would be bringing them in to “suffer” like you.

I think this is the wrong way to look at it. Telling someone their dream of being a mother is a selfish dream is cruel.

I struggle every single day from Ehlers-Danlos syndrome and I have given up much throughout my life. I was a basketball player; I had to stop. I was a Gaelic player; I had to stop. My favorite class in school was PE; I had to stop. I liked going for long cycles, running with my dogs. My dream was to be a wedding photographer. I can’t do any of those things now. I don’t have the energy to do any of them. I feel I have spent my life giving up on my dreams because of this disease.

No matter how hard I have tried, I have not been able to stop my condition from making decisions for me.

 

Having a baby was something I was told would be difficult and I was told not to try after the age of 25. I was also told it wouldn’t happen. My partner really wanted to be a daddy; he wanted biological children but he also wanted to adopt.

I’m not saying that the thought of passing EDS on didn’t cross my mind, after all I got it from my mom. But I have three siblings who don’t have it. That is one in four in our family. I have allowed my condition to dictate so much in my life since it flared, and I didn’t want it to decide for me if I should have a baby.

My daughter is now almost 8 months old. She is the happiest baby ever and everyone says so, even strangers. I wouldn’t say having her was a selfish decision on my part. I went through so much to have her, I had a difficult pregnancy and an even more difficult birth. But I did it. I would say I was anything but selfish that entire time. I did everything for her. I would not change her for the world, and if she ends up having EDS, she will be better off than I was. I started with symptoms when I was 11 but wasn’t diagnosed until my 20s. Knowing I have it gives me an advantage with her if anything comes up.

I refuse to live my life in fear of the “what if,” instead I will live my life with hope.

I saw many comments of people saying if they knew their children would have a chronic illness, they wouldn’t have had them. They wouldn’t have had the children they have now? My mother wasn’t diagnosed before me, but if she was, I certainly wouldn’t wish to not be here just because I have EDS. I am not healthy and life can be hard, but I am happy.

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Why We Need to Change Our Expectations When it Comes to Illness

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As a child, I was taught that certain things become expectations as we grow older. Things we learn to take for granted.

Things like when you go to the doctor the expectation is that they will cure you with medication or a procedure. Everyone with that illness will be treated the same way and generally with the same medication. When you have Elhers-Danlos syndrome, post orthostatic tachycardia syndrome, mast cell activation disorder, or a slew of any other chronic conditions, that’s not the case.

I think our expectations have to change, that they need to be adjusted to fit our circumstance. The truth is that chronic conditions such as these will not be cured in most cases. They will be managed, but being managed is not a cure. Not everyone with these conditions will be treated the same. Not everyone will get the same medication. Not everyone will respond to the treatment the same. Not everyone will have the same experience with the same doctor. There is no rhyme or reason for this. Perhaps it’s personality, perhaps it’s just an off day for the doctor or the patient. We really don’t know.

Since there is no cure, I believe we have to think of what we expect from the visit. That’s a hard thing to do. What we want is a cure and many of us can’t have it. So adjust. Really think of what you want. Do you want to be able to accomplish more during a typical day? A medication with less side effects? Less pain?

What are you willing to give up to get your expectations? Are you willing to do less but feel less pain? Are you willing to endure more pain to accomplish more? Are you willing to make radical changes to your diet? To your lifestyle?

It’s all about adjusting your expectations. Adjusting your expectations allows you to have some peace of mind, and some control. Sometimes by not adjusting your expectations, that leads to frustration, depression and a fear and distrust of doctors and medicine.

So, I advice that we all adjust our expectations and live the life we’ve been given.

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Thinkstock Image By: fona2

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Why I Say 'Yes' to Events Even Though Chronic Illness Means My Answer Is 'No'

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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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When Chronic Illness Makes Having a Schedule a Luxury

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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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8 Basic Things Healthy People Take for Granted

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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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Choosing to See the Good in Life With Ehlers-Danlos Syndrome

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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.

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