Fear, Anxiety, and Looking Inward

Many of us parents in the chronic illness community experience an intense fear and anxiety that we aren't doing a good enough job raising our children with our health circumstances. That our children will feel unloved, angry, or even sad that mommy/daddy can't play with them sometimes (and sometimes for long stretches of time). That our children will develope anxiety. Many parents I've talked to have said that their child/children becomes very emotional whenever they are in a flair-up. 

My daughter, for example, used to get full blown panic attacks any time I needed to lay down or go to a doctors appointment. I felt very guilty about that because her anxiety and fears are all well warranted. There have been many times in her short life when mommy has gone to the doctors and ended up being hospitalized for a week or so. Additionally, she knew that my needing to rest a lot tended to precede said doctors appointment. 

A while ago, I had posted in a support group about my struggles with this, asking for advice and/or support. Today, a friend of mine in the group responded with her own experience supporting and reassuring me that I wasn't alone. 

She wrote "My son is going on 10 and struggles with me being ill too. He often wants to play games with me but I just haven't been feeling well enough to. He'll start to cry and tell me that I don't love him and that he just wants to spend time with me. It makes me so sad." 

It is simply, yet profoundly heartbreaking. 

As I typed out my response, it just started to flow from me. And as it did, I was able to look inward. Resulting from her supportive comment, which was in response to my anxiety driven plea, came the answers I had been seeking the whole time. 

I posted this in response: 

There is hope. My sister (who is  2 yrs older than me) is autistic and also has cerebral palsy, epilepsy, and severe developmental delays. As a kid, I had an understanding of things far beyond my peers (still do sometimes) At home, we had sibling rivalry just like other siblings. She would spit at me, I would yell at her to stop, say she was so annoying, she'd spit again (she knew it was the one thing I hated most, lol) we'd go round and round. My family and I look back at those times fondly. Even though she was nonverbal, in a wheelchair, and developmentally around 18 months old (but much smarter) we were still sisters. We still bickered, and loved each other. We annoyed each other, and we stuck up for each other. I may have expressed anger and resentment towards her and my parents at times, but I never really was angry or resented having a sister like her. When I was around the ages of 8-9, I felt sad that I didn't get to have a "normal sister" and our family couldn't do "normal family" things like vacations, beach trips, getting share a closet with my big sister, having her help me get through middle school and all of its social  protocols. But as I grew older, (by age 13) I no longer envied those other families. I wouldn't change my sister for the world, and I am so proud that she is My Sister. I think a big part of how I felt ok with it and not left out was how my parents made it a priority to make time for me and what I wanted to do. I never felt neglected or overshadowed. Part of it is the age. I was like that, too. Later he'll remember these years and think of them differently. I do. 

Something I've started trying with my children is doing simple little gestures that let them know I love them and always want to be with them. I have instated an open door policy. I always invite them in when I'm ill and need to rest. They can go in and out, watch Netflix, cuddle with me, talk, or whatever works for us. If they get too rambunctious, they have to leave. Or, if I really need to actually sleep, I'll tell them they can hang out on the bed and watch TV, or play in the room but they have to let me sleep. So far, this policy has made a world of difference. They know I need to rest, but I still want to be with them. 

Another very important part of it: As soon as I'm up, I play whatever they were asking about when I had to say "not right now" and had to rest instead. Now they know that if I rest, I'll be able to play with them later. But if I don't rest I won't be much fun at all. 

Lots of hugs, kisses and cuddles. I sit with them and hold them at night as they fall asleep. That's their special time with me. You just have to find what works for you and your family. It doesn't matter what other people say (example: the theory that you shouldn't make it a habit to sit with them while they fall asleep. They'll never learn to put themselves to bed and they'll have attachment issues) It only matters what works for you and your family. Chronic illness creates a household that isn't "normal" and it shouldn't be held to "normal" standards. 

Then, I apologized for my comment being so dang long. And I'll apologize again for this post being so dang long ;)

Maintenance

It seems like it's really hard for some people to grasp that having to be in the hospital from time to time is a perfectly normal aspect of dysautonomia. To others, it seems that being ill and in the hospital means that when you leave you'll be better - and that is what it normally means. But for someone with dysautonomia (or anything chronic for that matter). The truth is, being in the hospital is just a tune up. It's reestablishing equilibrium. 

This is my "normal"

Example: Last week something seriously irritated my gut. I have no idea what exactly it was, or if it was even something specific. For all I know, it might have just been my body being a defiant teenager. The rest of the week I was unable to keep anything down. Nothing. Not water. Not my meds. Nothing. I finally called my doc and he told me to get over there ASAP. Because apparently not keeping anything down for three days is a bad thing. So long story short, I'm in the hospital. Again. 

Sweet, sweet IV fluids... Oh, how I love you! 

And I'm facing the statements like, "Maybe you just need to try harder to eat even if you get sick." 

And questions like, "Well what are they doing to fix this?" and "What if you just do ___?" 

...*sigh*... 

Ummm, no, I can't try harder. No, I can't just do ___. And they aren't doing anything to "fix" this. This can't be "fixed".

There comes a point where you just have to accept that this is reality and part of this reality is hospitalizations from time to time. This one is mainly to give my gut a rest. I'm on IV fluids (miracle juice!), IV meds, and a strict clear liquid diet. After being here for a couple of days my vitals are back where they should be and I'm keeping some of my meds down. My stomach is still ridiculously irritated and I'm still needing IV fluids and meds. But once everything chills out, I'll be able to go home. I won't be cured and it won't be the last time this happens. This is just maintenance. And I'm ok with that. I'm just waiting for everyone else to be ok with it, too. 

Lost Down The Rabbit Hole

There seems to be a new fad going around in full force: clean eating

The root cause of this lifestyles is admirable and important. I love that more people are becoming aware of what they're consuming and really beginning to examining their food... 

That being said, I desperately want to caution those who have adopted this lifestyle change. So here is my cautionary tale:

{source}

http://www.michellechant.com/2011/08/

curiouser-and-curiouser-down-the-rabbit-

hole-and-back/

I wanted to be a lean, mean, clean eating machine. I did everything right. I did my research. I balanced my meals. I was informed, and level-headed. I workef put everyday and had six pack abs. Despite all of that, my obsession turned lethal. The scary truth is that being "healthy" nearly killed me. Now anytime I see someone being/striving to be uber-healthy I feel an urge to warn them, to show them the otherside of the looking glass. 

 

 *Let me clearify, by "healthy" I mean: Cutting out processed foods, trans fats, unnatural sugars, added sodium and chemicals, preservatives, refined flours, dairy, and meat. I ate a very balanced vegetarian diet (I did eat fish and egg whites). 

At about the same time that I had mastered clean eating, I also began experiencing terrible GI issues (including extreme nausua, severe cramps, and stabbing pains). I don't believe my new lifestyle had much to do with it. I felt physically better whilst adhering to it,and  drastically worse when I veered off-course. I had bouts of milder symptoms before (off and on for several years, actually) so I believe the severe physical illnesses I was experiencing were most likely the same thing. I do belive that my compromised health exasperated my underlying medical issues (I just recently got my answer as to what this mystery ailment that has plagued me for over 10 years is - Dysautonomia). Coincidentaly, the deepest part of my struggle with ED occured just when my Dysautonomia really started to get revved up. As that gained strength, the physical pain of my body was in became too much. The pain from just ingesting food was great enough to cause a fear so intense that I would develop a full-fledged phobia. 

I should also mention that I experience (and sometimes still do) a strange compulsion to move after ingesting something. This started several years before my epic battle with ED began. It was as if being idle turned the food into lead, which would painfully weigh down on my stomach. That "full" feeling was physically painful. Excruciating. 

Soon after the clean eating and fitness obsession hit its pinnacle, the delusions began. If I worked out, the calories I ingested would turn to muscle and it would fuel my body more efficiently. If I didn't, then said calories would turn to fat and would be wasted. The health and fitness fanatic in me just screamed "Muscle is good, fat is bad!"

I will always remember one particular day in the fall of 2002. It was then that I realized I was completely at the mercy of my eating disorder. This was the day that I knew I was sick. I knew I was too thin. I knew I was dying. Even more startling - and important to convey- is the fact that I didn't want to be that thin. Not in a million years. I wanted to gain weight. I wanted to be like I was before: Athletic, strong, fit, lean but not skinny. What happened that day and the revelation I had, shook me to my very core. I was terrified. That moment went something like this:

It was morning and I was sitting on the couch, watching TV while I ate breakfast which consisted of a regular sized bowl of cereal (some sort of Kashi), soy milk, and 1/2 a banana. Sensible and satisfying. 

Immediately after ingesting it, I panicked. That was the day I knew I was a prisoner on death row. The only reason I didn't reach out and seek help right then and there was because of the social stigma attached to eating disorders. I was too scared of what everyone else would think. The fear of being labeled a weak, entitled little white girl was too strong. This vivid memory is locked in my mind, forever etched into the walls of my psyche. I dig it up anytime I hear that voice - that dreaded siren call of ED- whenever I'm on the brink of relapse. This memory reminds me of the journey back home and how long, scary, and dangerous it was. Because of that, I don't dare jump back down that rabbit hole.

“In another moment down went Alice after it, never once considering how in the world she was to get out again.” 

― Lewis Carroll, Alice's Adventures in Wonderland

* Side note: I think it is important to be honest in order to truly grow awareness. However, to keep things as safe as possible I will NOT divulge information such as: weight, height, BMI, or clothing size.

The depth of my rabbit hole

*Upon Hospital Addmittance*
    Average body temperature: 95 degrees
    Average heart rate: 40bpm
    Hospitalized in critical condition
    Beginning stages of multipule organ failure
    NG (nasogastric) Feeding Tube (24hr/day feeds) 
    PICC line with 24 hr IV infusion nutrition (TPN - Total Parenteral Nutrition)
    Refeeding Syndrome after starting IV and NG tube nutrition.
    Gastroparesis

    Severe GERD

    Water intoxication 

How long did it take  me to make my way out of just that part of it?

    I was rid of the PICC line and NG tube after 6 months, but was still unable to attend school for another year. 

Ok, how about after that? 

    It's 11 years later and I still have issues with gastroparesis. 

    I have weak joints, osteoarthritis, gastritis (which causes my stomach lining to bleed periodically), neurological damage (though some of that is due to a medication reaction a year later), memory problems... That's all I can think of at the moment. 

Please, please, please be careful! Being healthy and fit is wonderful. No longer being able to enjoy (or even eat) something "unhealthy", or just a day to be "lazy" is not. 

Spoonie Links and Resources

Chronic Illness Links:

Living with Bob (Blog about living with Dysautonomia) 

The Spoon Theory 

DINET (Dysautonomia Information Network) 

But You Don't Look Sick 

Just Mildly Medicated (Blog) 

The Chronically Awesome Foundation National Fibromyalgia and Chronic Pain Association (Facebook)

Epilepsy.com 

Celiac Disease Foundation  

Well Spouse Association (support for spousal caregivers) 

Growing Through Pain (facebook and blog) 

Paws for Ability (providing service dogs to children) 

All Purpose Canines

Old School Blogging

 I was visiting one of my favorite blogs, Hope and Coffee, and I saw that she did this "old school blogging" post. It looked pretty fun, and yeah, I needed something kind of fluffy to post (I admit it!). So I borrowed her template and here's what I got:

What where you doing 10 years ago?

Wow, OK, so "fluffy" isn't exactly going to happen as much as I thought... I just realized that 10 years ago I was as close to dead as you can get. I was a junior in high school. I had everything going for me: National Honor Society member, top 10 student ranking, Pipe Major in the pipe band (our town has a Pipes and Drums band -bagpipes- that competes internationally), soloist in the symphonic band (piccolo), tons of friends, AP classes, scholarships, etc. I was extremely healthy and fit. I only ate whole foods (way before the trend) and was a vegetarian. Then the floor fell out. I became very ill, very fast. With in 3 months I had dropped 30lbs (I was 4'11", so 30lbs is A LOT). The weight loss was largly due to an underlying medical condition that caused crippling pain whenever I ate anything. The doctors didn't know what was going on. By the time I had reached such a low weight, I had developed a full-fledged phobia of food. All I had to do was see food and my stomach felt like it was being stabbed. Everything that happened when I ate, I would suddenly feel. I was admitted to one of the country's best children's hospitals (All Children's Hospital in St.Pete, FL). At one point the doctors, along with a chaplain, pulled my parents aside into a conference room and told them that if they couldn't get me to eat with in 6 months, I would die (that's while being on a feeding tube, TPN, oxygen, etc.) Long story short less long, I was fighting for my life. I later acknowledge that I did have an eating disorder, but I also had a chronic medical condition. My eating disorder was ignited from the combination of that undiagnosed medical condition and my need (obsession) to stay healthy and fit. The later has just recently become recognised by the eating disorder community as orthorexia. So, in a nutshell (albeit a large nutshell) that's what was happening 10 years ago.

5 Things on your To-Do list

1.  Keep kids entertained, engaged, learning, etc... Ugh, can't that be my 5?
2.  Laundry
3.  Write/Research
4.  Make dinner
5.  Clean snakes' cages and feed Opal

What are 5 snacks that you enjoy?

Can I count coffee? Because coffee is my favorite everything ;) OK, fine, I'll put down 5 actual foods - Chocolate (the darker, the better), fresh fruit, pretzels, Luna Bars, raw veggies.

Name one thing you would do if you were a millionaire? Pay off our debt! Pay off my parents' deb, my mother-in-law's, and my Yia Yia's too. Fix our house in NC so someone will actually buy it (shoot, at this point it would be just so someone would actually want to sell it) and buy one here so my parents can have their house back. Savings! Donate!

Name some places you have lived: My husband and I both grew up in Dunedin, FL. When we were dating he became a US Marine in 2004 and was stationed in Jacksonville, NC. We married right after his training ended and lived there for 8 years. Although, the 8 years were broken up with deployments. During long deployments I moved back to FL due to medical reasons. My hubby just ended his tour in the Corps and we are settling back in Dunedin. So if anyone knows anyone who wants to hire an honorably discharged Marine for more than part-time (you know, so we could actually pay our bills), that would b awesome ;)

Name some bad habits you have: Checking (more info here), not resting when my body says it needs to rest -but seriously how can I when I have tons of stuff I need to do? Always being sick is sooo annoying! Am I right? You know I am.

Name some places you have worked: I have had several jobs over the years, but they all ended ether by hospitalizations or moving. Some of those jobs/places would be: Gymnastics coach (I was a gymnast for 10 years), Victoria's Secret, and Neilsen (market research). I was also in school for a chunk. I've done a little freelancing here and there, but now I'm a SAHM.

The What and Why of Sapling Stories

So I recently (recently, as in like, 2 days ago) found out about WEGO Health and decided it was a good fit for me. So I'm giving it a whirl! WEGO has a challenge this month with writing promos for each day - the "every day" part was almost enough to send me packing right there. I was planning on cranking a quick recap of the couple of days I had missed the other day, but my body had other plans and I ended up having seizures instead. Fun. So here I am to try again!

Day 1: Why do you write? I started this blog as an outlet and actually intended it to be a family-oriented, positive parenting and pre-school activity type blog (hence the name "The Sapling Stories). As I met other bloggers and become more aware of the blogging community, my content shifted. With out realizing it, my blog became centered around awareness. Awareness for things I feel very strongly about. I just naturally started writing about them. The main one that I feel grabs my attention the most is eating disorder advocacy. I am a survivor (I feel like I should say "surviving" because recovery is a continuous thing that never really ends, or at least it hasn't completely ended for me) Actually, I had a support blog years ago on Xanga (I said it was years ago), but stopped for some reason when everyone was switching over to MySpace (my husband was also deploying for the first time and everything was kind of topsy-turvy). I battled stereotypes, stigmas, myths, and death. Now that I have children it scares me sh*tless that they might battle the same demons. My other two are Autism (special needs in general, really), and chronic illness. Special needs because of my sister and chronic illness because, well hell, that's what I've been dealing with for most of my life (that is also a huge factor into my battle with anorexia/bulimia/orthorexia - seriously, eating disorders are much more complex than society thinks!). I have found a support network in the online community that I was desperately lacking before And it has been amazing.

Day 2: Tell a bit about your conditions, 5 things you want people to know about them, and a few links to other articles you've written. Note: My links will be highlighted throughout, not listed separate ;) I kind of just covered the "what", so here's the 5 things: 

  Eating Disorders

1. Eating Disorders do not discriminate! It is not a teenage white-girl affliction. Every age group, of every ethnicity, of every walk of life is affected.
2. You can't tell anything by a person's size. Just because someone isn't rail-thin doesn't mean that they're not suffering.
3. It's not about food - not completely. ED's are complex, very complex.
4. You can't just "snap out of it" or "get over it". It takes time and will be the hardest thing you've ever done. For me it took a year of grueling, intense hospitalizations (including NG Tubes, IV TPN through a PICC, oxygen therapy, and missing my entire senior year of high school) and several years of outpatient treatment. 
5. It starts way earlier than you think. I can remember being preoccupied by the need to be "perfect" as far back as I can remember. I'm talking age 5-ish. And let me make it clear - No one ever implied that I needed to be "perfect". It's not all a societal thing, genetics and brain chemistry contributes greatly.

Autism and other special needs:

1. Just because someone has special needs (may it be cerebral palsy, autism, Down's syndrome, or anything else) doesn't mean they can't hear you (to all the smug trolls: if they actually cant hear, they still know) They know when you're being mocking and judgmental, and they feel the pain as much as anyone else.
2. The R-word is not okay. Ever.
3. Even though my sister functions at an 18month old level and is non-verbal, we still have sibling rivalry. We get into fights and argue just like any other siblings.
4. Everything has to be adapted. That bed you just bought? Yeah, that's gonna have to be modified so it's safe.
5. Everyone has to be flexible. Just because you planned a day trip to the beach that you have been looking forward to for weeks doesn't mean it's going to happen. You may get half way there and need to turn around because its not a good day for them - and you'll completely understand and go with it. Even when you are 7 years old.

Chronic Illness:

1. Everyone needs to read The Spoon Theory
2. Just because someone's in a wheelchair doesn't mean they are paralyzed.
3. Believe me, I do not want to be in bed all day! Don't give me that "must be nice" bull. It's not and it isn't funny.
4. Dear doctors: When I come in to see you and I explain what's been going on, do not look at me like I'm insane. Even if my vitals are fine, just take the damn time to check it out.
5. Just because a had a good day (or week or whatever) yesterday doesn't mean that I'm going to have a good one today. No, I don't know what's wrong or why I'm worse today when I was "fine" yesterday. I wish I did.

Day 3: Post a picture that captures your condition/your experiences 

Advocacy Aspirations

Day 5 for the WEGO Health blog challenge is Aspirations. 

 We are supposed to write what our dream activism aspirations are. No limitations - money, time, health, or otherwise. We are told to dream BIG! 

Wow, no limitations? Really? That should make it easier, but it doesn't. I've become so used to my limitations that its hard for me to think outside of them. After a while, I started to grasp the idea and actually formed something - and through that "dreaming big" I was able to find things that were actually with in my limitations. Coolness. Identifying these aspirations helped me realize what I really want to advocate about and what isn't all that important to me. 

Chronic illness - yeah, I have them and they suck. I have battled them for years. Yet, I know so many other people who are doing an amazing job advocating for them that I don't really feel the need to (Living With Bob and Just Mildly Medicated, I'm talking about you!) That leaves me with EDs and special needs. These are equally important to me. I watched my family struggle to provide what my sister needed (wheelchairs, specialized therapy, modified housing and vehicles, etc) and I know how hard it is. My ED almost took my life. The fact that it was so heavily influenced by the chronic illnesses I faced made it much harder to be properly treated. My Advocacy Aspirations ED (in order from most realistic to Dream Big No Limitations)

• Gain blog traffic
• Meet other advocates
• Be able to pay some bills with my blog
• Link up with NEDA and participate in events and
• Speak at events
• Host an event
• Link people together with organizations who can help
• Help place people in treatment centers/ help fund their treatment (it's ridiculously expensive and most insurances don't cover them)
• Start a charity or program of some kind

Special Needs (same order minus the "blog" stuff because, well, it's the same blog)

• Raise awareness
• Link families together with local resources and support networks - and through that, help families obtain those critical things that are so hard to get: wheelchairs, therapy, lifts, prosthetics, braces, etc.
• Link families together with enrichment organizations/events (recreational, fun stuff)
• Help my mom start her non-profit

HAWMC Day 13

This was actually a little more difficult than I had originally thought. Well, no that's not entirely true. It was pretty easy until I had a flair-up the other day, after that it was quite... Interesting. So with out farther adieu, here are my random acrostic-esque words.  

• C - constant
• H- hope
• R- rising
• O- over
• N- no
• I - improvement (or)
• C-  cure
• A- and
• L- listening (and)
• L- learning
• Y- you

 

• A- are
• W- what
• E- encourages
• S- spoonies
• O- over
• M- miles
• E- everywhere

• E- ever
• P- perplexing
• I- illness
• L- leveling
• E- entire
• P- pathways,
• S- short-circuiting
• Y- you

• E- excruciating
• A- and
• T- testing
• I- illness
• N- never
• G- granting

 

• D- dreams.
• I- incessant
• S- serpent
• O- owning
• R- reality,
• D- decaying
• E- every
• R- real
• S- sentiment

 This one I did not come up with. It is perfect, so I'm not going to mess with it ;)

• A- always
• U- unique,
• T- totally
• I- interesting,
• S- sometimes
• M- mysterious