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What It's Like to Be a Mom With Chronic Illness and Have Kids With Chronic Illness

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I have four kids. Katie (8 years old) has Ehlers-Danlos syndromeasthma and a visual tracking disorder. Nano (6 years old) has Ehlers-Danlos syndrome, asthma and eczema. Anna (4 years old) has amblyopia, and Davy (2 years old) has Ehlers-Danlos syndrome, asthma, gastroesophageal reflux disorder (GERD), severe eczema, hypotonia, mild developmental delays and is a tubie graduate.

And then there’s me, the source of my kids’ genes. I have Ehlers-Danlos syndrome, GERD, asthma, eczema, eosinophilic esophagitis, postural orthostatic tachycardia syndrome (POTS), unexplained sudden anaphylaxis episodes and PTSD. I’m what is referred to as a spoonie.

On the outside, we look like a “normal” family. But if you look a little deeper, you’ll see the chronic pain that affects Katie, Nano, Davy and me, the kitchen cupboard overflowing with medications, the ice packs stacked up in the fridge, the severe chronic fatigue and brain fog that surrounds me everyday, my walkers (a basic one I keep at home and one with a seat that I keep in the trunk of my van) for the days I have a hard time walking due to pain or weakness and a handicap parking placard stashed in the glove compartment of my minivan.

Between the five of us, we see specialists for GI, genetics, asthma and allergy, EDS, orthodontics, orthopedics, ophthalmology, pediatrics, occupational therapy and physical therapy.

We drive one and a half hours to most of our doctor appointments and often spend two or three days a week at appointments.

This is what my day planner looks like during an average month.

With so many medications and special needs in the home, it’s very important that I stay organized. The kids and I all have pill boxes that I fill weekly. I keep each child’s medications in a cosmetic type bag along with a list of what they are and their dosages. I also designed a medical binder so I can keep track of each one’s needs.  I had to learn all of this the hard way when I ended up spending the night in the hospital after an anaphylaxis event. It was then that I realized I was the only person who knew how to fully care for my kids’ medical needs, and I needed to be prepared for the next time I was away from the kids unexpectedly.

Being a mom of kids with chronic illness when I have special needs of my own is…well, let me put it this way: I’m freaking exhausted.

Let’s talk mom guilt for a minute. Every mom deals with this at some point, and mine consists of feeling guilty that my kids inherited my faulty genes plus feeling guilty that I can’t be the mom I want to be for my kids due to my chronic illnesses. I would love to be able to take my kids to the park and play with them outside, but thanks to my POTS, I get really sick if I’m outside for very long. I wish I could run around with my kids, but most days I have to tell them that they can only touch me gently because “mommy has owies.” For them it’s normal to see their mom frequently parenting from the couch and wearing braces on her knees, back, wrists, thumbs, etc.  I hate that that’s their normal.

The whole “put your oxygen mask on before you help someone else with theirs” thing… I’ve had to embrace it as my health has worsened over the last few years. That concept is hard for most moms because we tend to put our kids’ needs above our own, but if I don’t take care of myself, I literally can’t take care of my children.

On a typical day, I’m so exhausted by noon that I can barely put one foot in front of the other. At times, it’s been so bad that I’ve fallen on the floor and been unable to get back up. My speech gets slurred, and I have a hard time forming a compete sentence.

My younger sister recently began working for my family as a PCA or Personal Care Assistant for the three kids who have EDS. It’s hard for me to accept that I need help just to make it through the day and care for my kids because I want to be able to do it all myself. But since my sister became our PCA, my fatigue and pain levels have dropped quite a bit, and I’ve actually been able to enjoy my children more. For my kids’ sake, I have had to let go of my pride and accept that I need help functioning in day-to-day life.

Taking care of myself is not only important so I can continue to care for my kids, but also because they inherited EDS from me. They’re watching me to see how to live with this genetic disorder, and if I don’t model self-care, they won’t learn how important it is for them to do the same. Someday, they will probably need help getting through each day just like I do, and I need to teach them that it’s OK to ask for help and to accept it when it’s offered.

Being a special needs mom with special needs is hard, but not impossible.

Follow this journey on Sunshine and Spoons.

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Lead Thinkstock photo via ChristenLola.

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Finding the Strength to Support Myself in My Battle With Illness

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Everyone with a chronic illness will probably say that we only reveal to others what we want them to know and that we are keeping things to ourselves every single day.

When you’ve lived for a while with it yourself and related your problems to your closest friends, you begin to realize that you are becoming repetitive and no one wants to hear about the same problems over and over. It’s obvious that these problems are something you alone have to manage and you become an expert at coping.

Each day we realize that these symptoms are just part of the bigger picture of what we have to deal with.

What is really difficult, though, is rationalizing things for ourselves; we are learning all the time about our own bodies. It can take several events of the same symptoms to teach us about our illness so we can then arm ourselves with the skills and knowledge to not be worried if it happens again.

I know I am constantly learning from myself and if I tried to explain it to others it would seem superficial, but when your symptoms control your life you constantly have to evolve to integrate them into everyday living. Others would never understand if you said, “I’m tired all the time, my eyes hurt, I can’t seem to see as well this week, I feel dizzy and nauseous and have no energy.” They might think you are making too much fuss over things, but they have not had to cope day in and day out with such a wide range of symptoms that accompany Ehlers-Danlos syndrome, Meniere’s disease, fibromyalgia, arthritis and Hashimoto’s autoimmune disease. How can they understand if they have never experienced it?

Starting to look at it from this perspective has given me more strength and understanding of other people’s perceptions in a positive way. I no longer look for the support I craved from others. I have developed my own strength and my own coping mechanisms, and most importantly have figured out how to look after myself. Yes, myself – being easy on myself and understanding my own limitations has brought a sense of calm rather than being ever-searching for something that was not there. You see the bigger picture and it is liberating!

From all of this we have to be our own advisors, judges and mentors making rational choices if the symptoms become worrying and don’t go away.

What will never go away though is the need to talk to someone whom you can trust to discuss your worries and try to rationalize if these symptoms happen to anyone else. This is where we should take strength in coming together and supporting each other through any channels we can so we feel powerful in our own journey.

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Thinkstock photo via standret.

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The Emotions of Not Being Able to Eat in a World That Revolves Around Food

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“Hi, waiter? Yes I’d like to order please. I’ll have the tube feeds for dinner. Oh wait, no, I’ll have the parenteral nutrition. Thanks so much.”

If you have no issues with food, you probably haven’t thought about how food-centric the world we live in is. You can’t watch the TV without an advert for a supermarket or restaurant. You can’t walk down the high street without sights and smells of mouthwatering (and sometimes nauseating) foods. And socialization? When was the last time you went out to do something that didn’t involve food or drink?

Food and drinks are everywhere, and for good reason. I’ve learned it’s fairly important (!) to get decent nutrition, as I’ve resorted to tubes and central lines to do so.

So living in this world when a sip of water can leave you severely unwell presents an issue as a result of gastro-intestinal failure due to Ehlers-Danlos syndrome. My attitude towards being around food changes every day, so I’ll briefly explain some of the emotions I feel.

“I just want to be included.” Without a doubt, the thing I miss most about eating and drinking is going out with friends or family. Meals are celebrations for all kinds of events and an ideal time to catch up. Of course, I can and do still attend restaurants and cafes, but sadly telling a waiter that “I’m really sure I don’t want anything, thanks” gets tiring.

“Please stop making a big deal about this.” There’s a look you’ll only understand and receive if you’ve been unable to eat. It’s a cross between puppy dog eyes and almost bursting into tears just as they’re about to take the first bites of their meals, and it’s the most frustrating look in the world. I know it’s sad I can’t enjoy the food you are, but you can and I want you to savor it. I want you to realize how lucky you are, and enjoy every bit. I don’t want your sympathy, I want to see your happiness.

“Food is my mortal enemy.” There are times when the thought and smell of food bring on debilitating nausea and sickness. Blagh.

“My God, I need 20 chicken nuggets and a pint of Ben & Jerry’s right now.” Food is comforting after a bad day sometimes, but obviously not to my digestive system.

“I actually couldn’t care less about not eating anymore.” There’s so much more to life than food and drinks. I would rather be with my friends who are eating than alone at home. I’d rather keep living as well as I can than getting upset about losing the ability to eat and drink. I’m only human and wish I could feel like this every day, but there are definitely days that I do.

“You don’t know what you have until it’s gone.” Food’s great. Functional digestive systems are great. Nutrition and sustaining yourself is the greatest gift. If you have it, embrace it.

Like I said, I feel differently about food and being tube-fed every day. So please don’t assume I don’t want to be around food and not invite me to meals and gatherings. Please leave that decision with me.

Follow this journey on That Professional Napper.

Thinkstock photo by duha127

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Even With Chronic Illnesses, I am Happy

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I live with chronic illness, which is a fact that I make no efforts to hide. I don’t hide it because it’s part of who I am. The person I am today has, in so many ways, been shaped by the trials that have beset me due to my health.

Something I am sure baffles others about the way I chose my life is how I can be happy and optimistic, how I can even get out of bed in the morning with the weight of my health challenges. The truth is, being sick has opened my eyes to how precious life is and I don’t want to vote against this precious gift that is mine, of life, by giving up the fight.

I was born with a genetic disorder, Ehlers-Danlos syndrome, that has now caused gastroparesis, a condition that means paralyzed stomach. As you can probably guess, from the sound of it, paralyzed stomach means it’s hard to eat. It wasn’t really sudden, but gradually over time. I have come to this point where there are literally less than a dozen things that I can eat and even then, only one of these things is safe 100 percent of the time: Potatoes. Got to love Potatoes!

I was recently diagnosed with a patent foramen ovale (PFO), which is a hole in the heart between the left and right atria, along with three leaking valves. It’s also suspected that I have dysautonomia which can also mess with the rhythm of the heart, so it’s just a fun party!

I live with mental illness, so I get depressed and anxious in general, but it is also triggered by illness. And, this is just a small portion of my troubles. So, why am I so happy?

I’m happy because I have things to be grateful for. I’m happy because I am most richly blessed. Yes, I am blessed. I have friends and family members who love me.

I have an adorable min pin and an adorable guinea pig.

I’m happy because I’m alive. I’m happy because I refuse to think too far into the future. This is a coping mechanism because if I think about how long I’m going to be alive, I might break down and just give up living.

I’m happy because I can walk, get out of bed, and I can still eat a tiny amount of food.

Yes, I have a lot I could complain about but I don’t really want to hear myself complaining all the time. So, I’m happy because as hard as life is, I know it could be worse. I know that everything I have could be taken from me. I could lose friends and family, and my health could get worse. However, I have been through worse, I have survived worse, I have fought and won so many battles that left scars but did not kill me or beat me.

I know others will try to drag me down, but I’m happy because of my therapy. I’m happy because I learned therapeutic ways to cope.

Someone or something is bothering me? I’ll just put my troubles in a boat and watch them float away on water. A powerful coping mechanism.

I’m happy because I know that my depression and anxiety, let alone every other thing that attacks my body, will not break me. I’m a fighter with a lot of tools under her belt. I’m a fighter with a large mental health first aid kit.

I’m a fighter who is not afraid of fighting and that is why I am happy. I have a million and one reasons why I should be happy. I have maybe 20 reasons I should be sad. Sadness be gone. Sunshine, love, laughter, and happiness are here to stay. Oh, happy day!

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How I Decide When to Rest or Push Through Fatigue

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The other day, I had a terrible, horrible, no good, very bad day (just like Alexander). There are just days like that, for everyone, ill or not. It was a hard day, so hard that even though I was exhausted that night, I didn’t want to go to bed because I was terrified the next day, which was my day off, would be just as horrible.

The next morning, I woke up, and initially had much enthusiasm for the day. I had two important tasks I needed to get done, both of which were decidedly un-fun: finalizing my health insurance for the year, and spending a substantial period of time at the Bureau of Motor Vehicles.

As un-fun as both were, both had looming deadlines and needed to get done, and I was the only one who could do them. It was for my health insurance, and the title was in my name, so they weren’t tasks my husband could do for me.

Unfortunately, that enthusiasm vanished after I dropped my daughter off at preschool and returned home to get ready for the day. The chronic fatigue that accompanies my Ehlers-Danlos syndrome was in full swing. All I wanted to do was rest. I was tired. Wasn’t my body telling me to rest?

Unfortunately, I am just really bad at listening to my body’s cues. Or, maybe my body just doesn’t give me good cues. For example, when I was pregnant, I had a very rough journey that was plagued by early labor scares and two and a half weeks of prodromal labor with real, actual, painful contractions, but that don’t send the body into active labor, just progress very, very slowly.

Everyone told me once it was “real” labor, I’d know. And guess what? I didn’t.

Real labor felt very similar to “not real” labor until it was time to push. So, how do you listen to your bodily cues when they’re not very good?

Much talk goes into how self-care equals rest. And in a lot of ways, self-care does equate to rest. But sometimes, it means pushing through and doing tasks that might be hard, but are ultimately rewarding for our long-term health.

For me, the best self-care plan involves plenty of balance. If I tip the scale too far either way, into too much productivity or too much resting, it’s easy for me to get stuck that way, and fall into unhealthy patterns. In 2016, I got stuck both ways, within weeks of each other, and since my 2017 goal is wellness, I am determined to have a better balance this year.

Since I couldn’t rely on my bodily cues, I relied on logic. If I would have put off these really important tasks, I would have just been much more stressed later. Any potential positive from the rest would be completely cancelled out later by the stress. So that morning, the best self-care for me was not rest, but pushing through.

I was so nervous going to the BMV, as I’m not good with new tasks, and since I had to change over a title, it was a lot more than the routine drivers license renewal I’d done before. But despite my anxiety, it was a smooth, and even enjoyable process. (As enjoyable as the BMV can possibly be.) When I got home is when the balancing act came into play. I felt go go go, and wanted to go to the laundromat and do some laundry.

But thanks to my husband’s wisdom, I waited to do that task, knowing I’d done a lot that was difficult for me earlier in the day and needed to slow down. And as soon as I sat down to eat some lunch, then the fatigue set back in, and then, having pushed through earlier, I was able to take that nap.

So, yes, absolutely, sometimes self care is a nap. Sometimes it’s slowing down to find out what you prioritize and what’s truly important.

Sometimes, self care is pushing through. It’s getting up too early in the morning to go to a job you genuinely love, even though it’s sometimes stressful. It’s applying for that new job because even though the application process might be stressful, because it’s going to be ultimately fulfilling work that will bring you joy despite your pain. And, yes, sometimes it’s long phone calls with insurance and going to the Bureau of Motor Vehicles. But for my self-care plan, I’ve got to push through. I can always nap when it’s over.

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Why My Chronic Illnesses Help Me Live a Better Life

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Finding a better life through chronic illness. Say what? Can those two things coexist? For me, they do.

It’s been two years since my wheels came off quite spectacularly. It’s been two years of major body and life discovery. Not only about this health condition and what it now means for my life but also how, unbeknowns to me, this it had been working its magic in the background prepping me for my big fall.

It had been there all along waiting for its special moment to shine.

I have Ehlers-Danlos syndrome hypermobility type, a genetic something that is relatively common but quite under diagnosed and a secondary condition, dysautonomia, that is quite common and underdiagnosed also.

I have particular issues keeping my blood up due to lax connective tissues. As a result, I have developed quite the adrenaline response to it.

I have developed what you might describe as an adrenaline dependency and a body that has become hooked on the high.

An “up” type of person in a body that has become increasingly worn out by its adrenaline antics as it’s aged.

Perhaps a body where the intersection with life in the 21st century was always destined to fail?

I crashed two years ago when my adrenaline engine revved full throttle non-stop after a period of work stress and then overexposure to heat.

Heat and I don’t mix. It dilates my already lax blood vessels and throws my body into complete panic. I know that now.

Sitting or standing for long periods doesn’t bode well either. The impact of gravity causes too much of that blood stuff to sink.

And doing anything revvy causes my adrenaline to overcharge. So cardio exercise, talking a lot and any form of work stress is now a no go.

I have been consumed by “go” all my life. Go out. Go do. Go work myself silly. I was hooked.

Now I find “stop” is my new mantra.

There’s a lot about this body that I know now.

Everything I do these days, despite my somewhat loud genetic make-up, has to be gentle.

Stopping is working.

My body and mind are now in a more relaxed place. I’ve buffered myself against the extremes that set off my symptoms.

I live my life with mindful restraint.

And with stopping comes a massive realization.

What I hadn’t realized with all the “go” was that I was missing out on so much of the richness that is life.

Stopping has enabled so much.

Stillness, quiet, the gentle fulfillment that comes in the space of doing nothing, the calmness that comes with slow, the space to reconnect with those that matter, the self assurance, the self esteem. Many things, in fact.

And stopping has enabled me the time to tune into this complicated body of mine. To work out what it likes, what it doesn’t, what situations nurture me, which ones don’t.

There’s something magical about knowing so much about yourself.

Two years might sound like a long time. In some ways it is. But not when you consider that it’s been time to get my life back. Two years of discovery and a renewed sense of worth.

My body has shown me the way to a life better lived.

I’ve now got a life. A “real me” kind of life.

That’s time well spent, I’d say.

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