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 ;)

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.