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. 

Yay! It's October!

October is one of my favorite months (if not my #1 favorite month). It has so many awesome things going on! I LOVE fall, even though I live in Florida, which doesn't exactly get the best "fall" experience. That's actually the one thing I miss from living up north (and by "up north" I mean North Carolina). I miss the crisp air, beautiful foliage, and real pumpkin patches. But Florida has way more going for it, so it wins. 

Aside from October being the beginning of my favorite season, it's also the month of my wedding anniversary, and (duh) Halloween -which totally ranks right up (if not over) Christmas! 

It is also Dysautonomia Awareness Month. I know, it's awareness month to other things, too... But this is something with awareness so obscure that most medical professionals have NO idea what the heck it is let alone how to treat it. I was diagnosed with dysautonomia pretty recently (May, 2013), but I have actually been battling it for the past 10 years. There are so many aspecks of my life that it affects and I am finding myself advocating more and more out of necessity. I have to try and explain what they heck it is to people and justify why I have all the issues I do. That, by itself, is exhausting. Lucky for me, I have a wonderfully supportive family and have found others with dysautonomia through support groups. Those support groups have proved to be paramount to my quality of life. I never really thought much about support groups before, but I must say, with out them I'd feel very alone in my illness. They have become true friends of mine, even though I have never met most of them on person. Ok, all rambling aside, since it is Dysautonomia Awareness Month I'm at least going to give you my favorite links and resources. 

Dysautonomia (or autonomic dysfunction) is any disease or malfunction of theautonomic nervous system (ANS). The autonomic nervous system controls a number of functions in the body, such as heart rate,blood pressure, digestive tract peristalsis, and sweating, amongst others. Dysfunction of the ANS can involve any of these functions.

A fantastic place to start is Dysautonomia SOS They have an enormous amount if information and can help connect you with regional support and doctors. 

http://www.dysautonomiasos.com

Dinet is another great resource! What is it? From their website: 

Our Mission: To raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.

The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization. http://www.dinet.org

For children/adolescents with dysautonomia check out Dysautonomia Youth Network of America http://www.dynainc.org

A couple of my absolute favorite blogs are run by amazing women with dysautomonia. Definitely check them out! 

Living with Bob(dysautonomia) http://bobisdysautonomia.blogspot.com/?m=1

Just Mildly Medicated http://justmildlymedicated.com 

Healing Hopefully http://medicalmusingsbymeg.blogspot.com/?m=1

What animal would your chronic illness be?

TDay 8: If your condition was an animal, what animal would it be? 

I initially was really excited about this one - but some of the chronic health problems I deal with (or people close to me deal with) are terrible things that I don't want to associate with any animal (I love all animals and don't think that's fair). My first thought was to assign a mythical creature to each one. Mythical creatures are super interesting and many have such complex backgrounds and characteristics that it just seems natural to link them with something as complicated as a chronic health problem. I jumped on Google and I Googled away for far too long and was still stuck behind a wall. I don't know if its the perpetual brain-fog I've been in or what- I mean, I had ideas, just nothing that made me go "Oh yes! That's it!". So, alas, that's my quandary. I do tend to over-think things and this could very well be one of those times. So I started to think about the real animal associations and figured that if I were to assign an animal, it wouldn't be the animal as the condition, but rather, the animal as a person with the condition. That is a way I can use real animals with out feeling terrible. So here's a working list of what I came up with. I still think this idea is really cool. So please, if anyone has any ideas, share them! I really want to incorporate not only the conditions that I suffer from, but the ones that those close to me suffer from as well.

Epilepsy: Mythical: Something celestial or elemental. Real: Firefly 

Eating Disorders: Mythical: Will 'o the Wisps. In European folklore, these lights are held to be either mischievous spirits of the dead, or other supernatural beings or spirits such as fairies, attempting to lead travelers astray  

Real: Hummingbird

Fibromyalgia: Mythical: ??? Real: ???

Dysautonomia/POTS: Mythical: Chimera or shape-shifter or the Hedley Kow  A very mischievous, but not dangerous, shape-changing boggart which used to plague the villagers of Hedley (North-umberland) by his many tricks (Henderson, 1866: 270-1). A farmer mistook him for his own horse, a milkmaid for her favourite cow, an old woman for a bundle of straw; in each case he caused unexpected trouble, and then vanished with a loud guffaw. He could even turn into the likeness of a girl, to trick her sweetheart into following him till he ended up knee-deep in a bog. Real: ??? 

Autism: Mythical: Unicorn - Everyone knows of them, but very few actually know them. Mysterious, illusive, and Pure. 

Real: ??? 

Cerebral Palsy: Mythical: ... total blank... Real: Coyote - Extremely clever and adaptable. Forms strong family bonds and is frequently misunderstood. 

So please, if you have any other ideas feel free to share them! Also, if you would like another condition represented on here that isn't, let me know! I would love to expand this!