Hi, Anxiety.
By Cathy Jameson
Several nights a week I am a worry wart. The nighttime worry ritual begins as I physically begin to feel exhausted. My eyes get droopy and it takes me longer to finish a chore I should have done hours ago. I always hope I can get through the remainder of the evening without letting anxiety take over. It rarely happens though.
I head to bed with the final thoughts of my things-to-do list that I have mentally written for the new day. I slide into bed saying a bunch of prayers to guide me for tomorrow, close my eyes and wait to drift off to la-la land.
Sleep should be the next logical step. It probably is for the majority of people but it isn’t for me. I find myself tossing and turning, wondering and worrying instead of slowly fading into slumber. My mind races toward a finish line that doesn’t exist. All I “have” to do next is sleep but I can’t.
What keeps me awake at night for hours on end? I’ve done as much as I could possibly do all day long. I’ve transported multiple children to multiple outings in opposite directions. I’ve made countless meals and snacks while filling sippy cups and SIGG bottles. I’ve measured medications and wiped boody bums throughout the day. I don’t get to sit in one place too long and can barely eat my own meal before bits of it are being requested by my children. Why am I suddenly in mental overdrive while my tired and overrun body is achy from taking thousands of steps over toys, around children and in between hugs and high fives?
I worry about what I could have done and what I can do about that. I worry about why this and why not that. I worry about who should have done that to prevent this while figuring out who I can ask for help to clean up the mistakes made in the first place. I worry about money and where it has to go and why it’s so quickly gone. I worry about the typical kids running around me and if they “get” why Mommy is such a freak as I read everything there is out there that includes anything to do with seizures, mito disease, special education, therapy and autism. I worry that I sometimes don’t worry enough and then I worry that I worry too much.
‘Good night, Cat’ would be the nicest thing to hear at the end of one of my days. ‘Shut up and close your eyes…and your brain’ is better advice. It could relieve the nightly anxiety. Once, I did try to go to bed as soon as I was tired. I tucked myself in at 6:03 pm. Steve did the dishes and did the bedtime routine for the kids. I thought I was going to get the best pre-parenting nights’ sleep ever. I was sadly mistaken when I woke up “for the day” at 7:15 pm. I was up for hours trying to get tired again and had another night of horrible sleep
Since I can’t go to bed at 6:03 every night only to wake up a little over an hour later, I need to figure out how to turn my nights into the ones I used to have before Ronan got sick. The kids’ bedtime was calmer, my evening of relaxation was longer and I actually looked forward to the next day feeling refreshed.
I would love to go back to the mindless prime time TV watching I used to do. It sounds so trivial but I would love to sit down and not worry about life for a few minutes. A long time ago, when the today was tucked away with the tomorrow far enough away to enjoy the tonight in front of me, I would channel surf. Ahhhh, the sheer joy of watching nothing and for no reason at all except to be entertained. I can barely remember it but I know it existed. It doesn’t sound very productive but it didn’t need to be. I wasn’t an advocate for my son back then. I was just his Mom. I wasn’t learning about therapy or the world of politics and how it affects my son’s future. I was just a girl living her dream of being married with children. I used to melt into the couch and watch HGTV, TLC, MTV, E! and whatever was in between. About two years ago, when I have had a chance to sit down with the remote control, I would look at that stuff on TV and turn my nose in its general direction. People were still acting, still singing and walking down red carpets. They were glitzy and glamorous. New seasons were the talk around the water bubbler the next day. The public wanted to be like their sitcom idols and changed their hair styles to do that. How did their warped reality become such a grudge for me? Don’t they know what’s going on in the world with autism? Shouldn’t they be forced to feel the urgency in our families’ futures? Don’t they care that I don’t get to enjoy the simple things in life anymore? And, how dare they flaunt the extravagant and audacious in front of me now?!
Mindless TV watching is something I’ve scheduled in. I put the TV in my bedroom to force myself to take a break from researching. I wait to read an article I thought I “needed” to read for another day. There is no anxiety while I have the TV on when I clean up after a long day. I have something to listen to instead of letting my thoughts drive me over the edge of darkness. I watch shows that have nothing to do with medicine or education. A reality show full of utter stupidity or a slap-stick comedy grabs just enough of my attention to remind me that while I’ll always be the Mom of Ronan, I’m also the girl I used to be: silly and carefree. There are a whole lot of new adjectives to describe me but I miss those two the most.
I have four healthy children who do normal activities most families do. That adds to the financial anxiety I have. Team sports, music lessons, the once-in-a-while fast food meals cost money too. Add in Ronan’s therapy that the insurance company won’t cover and we’re in a pickle! Working on learning how to manage the money we don’t have while making the money we do have behave better has been an issue for me. I can’t help but worry about that part of life. We’re working on the baby steps of a major budgeting program and we are actually making some financial strides forward. This change will, I hope, lessen the worrying I do.
My other children have me worrying to but for countless other reasons. They are so strong willed. However, they are also so eager and able to help their brother. They watch as Ronan struggles to say one word. They are so proud of him when he does finally say something. It’s as if my ears weren’t good enough to hear him when I get the full report with jumping and clapping little people dancing, “Ronan just said juice!” They watch him work with his instructors and therapists and have the same excitement in their voice as I do when I retell his victory. My typical children are not on my worry radar as much as Ronan is. There is more of a fond wonderment about them. I wonder if they’ll always be quick to help Ronan or begin to find him annoying. I wonder if they think he’s going to “grow up” like they are or see him as a burden if it’s their turn to take care of him when he’s an adult.
Even though I am anxious to end the kids’ day so I can finish my own, I have mixed emotions as I tuck them in. Will everyone sleep through the night? Will I get everything done? Is it normal that I can’t wait for night to fall to chuck these kids in their bedrooms until late tomorrow? Each night as we begin the kids’ bedtime routine, we share stories, read a book and start prayers. I hear, ‘Mommy. Mommy. Mommy,’ as the kids say their intentions. I didn’t realize that they were truly praying for me until Christmas when I made a greater effort to enjoy the holidays. We had some major disasters right before Christmas that had me reeling. I harbored feelings of resentment, anger and despair. The kids picked up on it quickly and must have put their rally caps on for me. Every night, even if I’ve yelled or hollered, taken away privileges or denied a special treat due to their actions or my own bad mood, I am still a prayer request for at least one of my children.
I am thankful for this because anxiety is no fun picnic. I wish it had skipped over me and attacked another human being. I’ve got so much and then some to take care of. Controlling the feelings and the overwhelming emotions that come with it are sometimes worse that the actual, physical events right in front of me. I know I will be able to work through the anxiousness of some situations I face. I am willing to learn strategies to help me get through the other situations too. This journey has been full of high roads and low roads. I would prefer there to be high hopes and no low emotions. If I could change the worry wart in me to a peaceful parent, how much easier life would be! I hope for peace in the midst of the daytime storms and restful sleep to refresh me for the next day. I wish for that peace to surround Steve, my children and your family too.
--
Cathy Jameson is mother of five all the time, advocate to Ronan full time. She runs the Age of Autism FaceBook fanpage in her spare time.
Re Post by Bensmyson: Oh My God I am right there with you on the same page. The material downfalls and inequity in this world are so unfair and disheartening. What does it take for those blessed with mega money to see the light? Would Autism in their world get their attention? What about some photos of starving children in Africa or India? WHAT will it take???!!!!
Well I was thinking about SLEEP before I read this post by Bensmyson, so here is what I wanted to share: I was researching melatonin and seratonin in relation to autism. Melatonin is the sleep hormone that requires seratonin as a precursor and seratonin requires L-tryptophan as a precursor to produce it. In a non autism related article on this subject I read how stress and anxiety depletes seratonin. I was thinking "Oh Yes, autism produces stress and anxiety"...then it hit me that autism produces stress and anxiety in the family caregivers as well as the autistic child. Then it dawned on me how I have developed into a person who can't sleep at night, and keeps waking up because I am continually obscessed with my grandson's autism, his recovery, what to try next, where is the money going to come from etc.? (Kim Stagliano may have noticed the late hours of some of my posts: 1AM, 2AM, 3AM etc.) I realized that the ongoing stress has caused my adrenal exhaustion and depression, but didn't realize that I was Seratonin depleted until I tried L- Tryptophan myself in addition to giving this to my grandson.
Various transdermal creams have helped my grandson tremendously due to their ability to bypass the intestinal malabsorption problems. So when I found an L Tryptophan cream I got it and the effects of this with my grandson are striking. His irritability and mood swings change into calmness as soon as I apply this to his skin, and the longer I have been doing this the more stabilized he is becoming. What the heck, so I tried it on myself and also ordered L-Tryptophan capsules. I am sleeping through the night now and my depression is lifting day by day. What a RELIEF!!! One of the MANY things I was worrying about is that I know that without sufficient sleep I am becoming less on the ball as a high quality caregiver for my grandson, and also since I "ain't no spring chicken", I was also worrying about not being able to stay healthy enough or even live long enough to continue caring for my grandson. Thankfully, the longer I use the L-Tryptophan the calmer I am becoming, less anxious, less depressed, sleeping like a rock lately. This week I had 2 days where I slept 16 hours straight. Sleep deprivation is exhausting in many ways, and the more our seratonin is depleted the more exhausted and anxious we feel. What I am learning is that as caregivers of children with autism we need some of the same nutritional therapies that they do, and if we don't take care of ourselves, we won't be able to take care of THEM!!!
Here are the products I ended up with after doing alot of research and links with info:
Info Re: Ajinomoto TryptoPure
http://www.vitacost.com/Doctors-Best-L-Tryptophan-with-TryptoPure
You can get this same high quality product here for a fraction of the cost:
Swanson Ultra
100% Pure Pharmaceutical Grade AjiPure L-Tryptophan:
http://www.swansonvitamins.com/SWU372/ItemDetail?n=0
Here is the link for transdermal cream:
Life-Flo DermaQuil w/l-Tryptophan Body Cream
http://www.swansonvitamins.com/LFH009/ItemDetail?n=0
This cream is only 10 bucks---Best 10 bucks I ever spent.
Anxiety and Insomnia is also connected to Magnesium deficiency (as is Adrenal Exhaustion) so I have added transdermal Magnesium oil and am getting even more improvements. I was already using this with my grandson, but DUH why didn't I try this myself sooner.
Here is the info and product links:
www.magnesiumforlife.com
http://www.ancient-minerals.com/#recommendation
http://www.swansonvitamins.com/health-library/products/barbara-hendel-magnesium-oil.html
Swanson Ultra Magnesium Oil: $8.99 ("Bargain City")
http://www.swansonvitamins.com/SWU481/ItemDetail
Magnesium Bath Flakes are also helping my grandson so very much in many ways, so if I can ever tear myself away from reading Age of Autism every night, I will try out these relaxing Magnesium baths instead of quicky morning showers.
Swanson Ultra Magnesium Bath Flakes: $14.99
http://www.swansonvitamins.com/SWU495/ItemDetail
I am going to bed now and going to SLEEP.....zzzzzzzzzzzzzzzzz
Posted by: Autism Grandma | March 31, 2010 at 01:25 AM
FWIW,
Your nighttime battles with worry/insomnia are/were my life story--I spent over 30 plus years worrying incessantly over all kinds of things and being almost totally unable to sleep through the night--ever--and much of that was pre-kids.
I tested myself for toxicity as part of my investigation of the mercury hypothesis; my hair test showed very clear toxicity per Cutler's counting rules. So, as soon as I was able to do so, I had all of my many amalgams removed by an IAOMT dentist and treated myself for toxicity using Andy Cutler's low and slow dmsa/ala approach.
I was very surprised, and delighted, that one of the many positive consequences of doing so was that my incessant worrying greatly de-escalated and I gained the ability to fall asleep quickly, and stay asleep! For a long while, I was shocked when I woke up and discovered it was actually morning, not 1 or 2 or 3 am. Now I am really surprised if I wake up in the middle of the night ever--but on the few occasions that something wakes me, I can almost invariably fall right back to sleep.
I don't know if every mercury toxic person would get this result from detox, but this was a very clear and welcome benefit of getting my amalgams out and detoxing myself. The downside is that I don't get nearly as much done at night, but I am much more rested, healthier, happier, and much less apt to lose my temper than I used to be.
Our dental insurance did pay a significant amount of the amalgam replacement costs as my fillings were old and deteriorating, though I had to spread the process out over a couple of years.
Info I have read suggests that stress reduces one's ability to detox, so it seems possible to me that over-stressed moms (or dads) may become mercury (or other heavy metal) toxic just due to general environmental and food exposures, even without amalgams. So it might be well worth doing a hair test with DDI to find out if your hair element test meets Cutler's counting rules for mercury toxicity, and if so, treating yourself.
Hang in there and best of luck finding a solution.
Posted by: Sue | March 30, 2010 at 01:44 AM
It looks like some moms also need bio-intervention. We tend to forget about ourselves and give all the supplements to the kids. 5HTP comes to mind.
Posted by: Cynthia Cournoyer | March 29, 2010 at 10:47 PM
I stay up most nights to at least between midnight and one.. I don't even try to go to sleep, I just know I'm not going to. I'm on Facebook, reading all the articles that my biomed friends pass along.. some health, and some autism news, some AoA : )
The only success I've ever had in rest is just to do more things for myself, and really enjoy it. Besides cutting down on caffeine and junk food, of course.. but bonding w/ the other ASD moms has helped a lot.
Just do your best, and you're a great mom!!
Posted by: Heather Zelikov | March 29, 2010 at 10:30 PM
Cathy,
I can relate to so much of this, from being kept up worrying, worrying about worrying, etc., and being unable to enjoy the "escapes" I used to before.
Before I married and had my daughters, I struggled a lot about why I couldn't sleep, couldn't get up, never felt well. Usually, I believed I was somehow sabotaging myself. I mostly blame amalgam overdose now, and knowing that at least has helped some even if a lot of the damage lingers.
On the rare occasion that I do happen to get six or seven uninterrupted hours of sleep, the difference in how I feel and how I can cope with all is significant. I think parents with affected children have much more reason to lose sleep, and yet much more need to get it.
So from someone who for the most part has been unable to get a good night's sleep for more than a couple of decades, I hope you can SOON regain a greater sense of peace and sleep better.
Posted by: JenB | March 29, 2010 at 09:46 PM
A huge number of people have a sleep disorder-even without autism in the family. It is incredibly common.
I have a couple of things that might help-
try not to nap at all during day, if possible. Attempt a routine at night--time of going to bed etc. No caffeine in the evening. One thing I hate is lying in bed when i can't sleep. If you waiting too long or wake up and can't get back to sleep right away -read a good book so you are not just thinking about not being able to sleep. It might relax you and make you sleepy agaion.
maurine
Posted by: Maurine Meleck | March 29, 2010 at 08:33 PM
My worse, came always between 2 - 3:30 in the morning. I would wake from a sound sleep, and start praying.
Did you know that if you pray real hard that the more you pray the more worked up emotionally you get? Well for me anyway.
I stopped begging after I became very ill, myself. The last thing we need in this family is one more sick person.
I refuse to worry anymore. I mean-I know that sounds impossible - but it can be done. Because if I don't- I will have a magraine headache so bad that if I get up I will throw up. I have no time for this, so I do not worry, sort of like some type of training - if you do this (worry) - the result is unbearable pain.
So young mothers watch out.
Posted by: Benedetta | March 29, 2010 at 11:55 AM
I'm sitting in Borders reading your comment, Tre. I'm tearing up. Thanks so much for adding your thoughts that speak so clearly of this zombie-like state we walk.
I had another migraine today, while driving. I still have a long day ahead of me. I dropped Ronan off to his therapy and forced myself to sit down. I'm chilling out to coffee-sipping, newspaper-reading strangers, crying at a book store while I take a break. I need every break I can grab so I can refresh and make it through the rest of this day.
Ronan keeps me going. He makes me wonder, whine and whisper, WOW. I get to be here with him sharing him with all of you. Hugs, Tre, hundreds of hugs to you and all of us parents that didn't want life but are doing everything possible to make positives happen.
Cat
Posted by: Cathy Jameson | March 29, 2010 at 11:05 AM
Last night:
I collapsed at 9:30pm (1/2 hour after reading/snuggling with my older ASD son). Awoke gasping for air/scream(?) at 11:30pm (son is getting bullied). Would read my book-NOT ASD (luckily, I can turn it off a bit while reading - but not with TV - active vs. inactive brain wave patterns, I presume). So after 10 minutes or so of reading - I would promptly get tired and try to go back to sleep. I turn off the light and BOOM - the anxiety-ASD mother brain goes right back on. This goes on for hours. Finally at 2:00am, I force myself to read for half an hour. 2:30am, I finally fall asleep. 5:00am, my husband wakes up, as I had been disturbing his sleep all night. He goes down to read paper/make coffee/walk dog. So, now my sleep is disrupted between 5:00am and 7:30am.
So a grand total of about 4.5 hours of solid sleep (split in two chunks), plus another 2.5 hours of disrupted sleep. Where in there were the proper REM/non-REM sleep patterns?
I haven't slept since this started - and my sleep is significantly disturbed when my son is having a bad day/stressed about something/mini-regression/etc.
I am a barometer of my son's day. You see it most in my sleep patterns.
I am currently trying neurofeedback right now (just so we can hemorrhage more money). It is helping me to calm myself - as I am being forced to relax/stop that busy brain. Meditation was a joke (for me), I can't turn it off. Prayer, again (for me) didn't help - I can't turn it off - unless actively singing at worship. I am very interested in trying Tai Chi - that might help (as my brain would be forced to follow the physical patterns).
Once upon a time , I was a WONDERFUL sleeper and would reliably get 8-9 hours of solid sleep a night.
Posted by: Henderson | March 29, 2010 at 10:39 AM
Omgosh....sitting here with tears and feeling a bit revealed and naked...it is like you took the words out of my life! Thank you for being so honest and forthcoming! I have 3 young kids, 2 with autism. My anxiety has become worse lately or maybe I am just more aware...the to do list that grows faster than the laundry and, the elusive, so desperatly needed sleep. I have tried every new gizmo, old ones too.
Jenn
Posted by: Jenn | March 29, 2010 at 10:05 AM
wow you are certainly one hell of a bunch of powerful, wonderful women!! how could you not be? funny how you didn't ask for any of this, but it somehow asked for you....
Posted by: debbie voss | March 29, 2010 at 09:10 AM
Oh Cat, nail. my head...all the way. How I can relate to
your anxiety. I may only have 2 children (one typical &
one who has autism), but my stress is no less and my
lack if sleep is equal to yours. Thank you for writing this,
thank you for sparing me the time & grief of having to
answer the same old question I hear almost daily: "Don't
you ever sleep"? Now I have something to shove under
their noses "here, read this. Only substitute Cat with Stefania,
Ronan with Rocco & Steve with Christian". And voilà, you have my
life & your answer: "uhm NO, I haven't slept a wink since Autism
became an unwelcome part of my family 2 years ago".
Hugs to you Cat, wishing us both eventual peace, rest & perhaps more insight on how to tell our minds to STFU sometimes.
Posted by: Stefania Ferrandino | March 29, 2010 at 09:06 AM
"How did their warped reality become such a grudge for me? Don’t they know what’s going on in the world with autism? Shouldn’t they be forced to feel the urgency in our families’ futures? Don’t they care that I don’t get to enjoy the simple things in life anymore? And, how dare they flaunt the extravagant and audacious in front of me now?!"
I just learned that a friend of a friend spends close to a million dollars a year fishing. Not fishing commercially, or fishing for food, but fishing for fun.
A 57 year old in-law of a relative of mine was just profiled in the Wall Street Journal, he bought an island off of Long Island to hunt quail.
I, on the otherhand, had to make a choice last week between buying supplements for Ben and paying the light bill.
I know these people work hard to have made the billions that they have, Im sure they worry that one day it will all be gone just as quickly as it was found, maybe even lose a night sleep once and a while because of a letter from the IRS or the SEC. But it's nothing compared to holding onto your child as you tread water in the middle of an ocean of autism.
Their yachts motor by as we struggle to keep our heads above water. No life line, no life raft, no slowing down, just cruising on into the sunset in search of a topless beach filled with centerfolds or in pursuit a big blue marlin that will be caught and released back into the wild. (wouldnt want to be heartless now would they?)
This recognition of this sort of wealth and extravagance is not envy in me, this is not coveting, this is something that just pisses me off, in a way it is that TV insane mentality of entitlement. The kind poisonous propaganda that is perverse, like fools who stand in line to buy lottery tickets, who put money into machines at casinos, the kind of bullshit that teaches to believe if you work hard enough good things happen. We will all win a brand new car. Nope, not buying it, not buying into the hope I will be found bobbing in this ocean of autism, me and you and Cat all discovered and rescued by George Soros, Bill Gates, the guy that lives down the street with a garage full of classic cars he collects because he can or Obamacare.
But while we all drift in this sea, let's keep our eye out for Gilligan's Island and try to make is ashore. We can build a fire, string together some huts, joke, hold hands, pray with one another. We can take turns by the pile of debris that is to be lit once real help is spotted on the horizon.
I can fall asleep in a heartbeat, but I cant stay asleep, I wake, I worry, I want dog-paddle out to find a sandy beach, and footsteps along the tide line. I dont want to be alone, I cant let go, I dont want to drown. I want to be one of those of you with the strength to make it to shore, to see their sons and daughters collect shells, chase one another, and laugh. I want to sit next to you marathoners at night, by firelight and tell you how you have inspired me, kept me afloat, given me real hope.
I suspect Cat you will be one of the first to make it ashore and will prepare the rest of us a spot on the beach.
God Bless.
Posted by: bensmyson | March 29, 2010 at 08:47 AM