After being diagnosed with Pure Autonomic Failure (a type of
Dysautonomia) I spend a lot of time of the couch. Now I have good days, good
weeks and sometimes even a good month but the reality is I clock most of my time parked on the couch surrounded with a laptop, iPad and an adorable 4 year old.
The thing I do regularly now that I never thought I would do...
I parent from the couch.
There are obvious parts of parenting from the couch that are not recommended. I don’t like that my kids usually bring me their homework instead
of me going to them. I don’t like that on more than one occasion (daily) I raise
my voice from the couch to referee some type of dispute when I know it is more effective to go to my kids. I don’t really like
that my four year old and I are still in PJs. Now any of those are fine sometimes, but every day
and trust me it gets old fast.
I will say this parenting from the couch includes a lot of reading and hugs, that part I am a fan of. When I find myself needing to parent from my cozy spot here are
a few of my favorites:
- Cuddle and watch movies (good with kiddos and the man)
- Reading (to kids or just all for me)
- Write a book (or half of one if you’re like me)
- Color (as long as you have a coffee table or are not afraid to lose a few crayons on the couch)
- Play American Idol (kids sing for you, you tell them they are going to Hollywood… or that they are pitchy)
- Age appropriate printable worksheets (9 year old sees this as punishment, 4 year old loves it)
- Headbandz!! (I mean other board games too but this one is just too easy!)
- Watching some really great kids programming (and some Scooby Doo… my youngest wants to solve mysteries)
- Couch Cushion Fort… need I say more??
 |
| Hubby "Is there anything you'd like to do today, anything I can do for you?" Me "Umm, how about a couch cushion fort, like a big one, one for me not the kids." Hubby "Sure" I love him |
So let me know:
Are you chronically ill and stuck parenting from the couch? What
are some tips?
Are you well and need to get off the couch and get involved?
What’s your plan?
Great blog Carrie - good luck from the couch!
ReplyDeleteI'm not, but I appreciate you sharing your experience. I think you're surely doing an amazing job, from the couch or not. I'm sorry that your illness keeps you there more often than not, and I hope that your symptomatic days are few and far between. *I found you via your comment on the Bloggess' page, and followed your link on over! Nice to *meet* you!*
ReplyDeleteHey Andrea, I do love some Bloggess! Glad to have you over here!
DeleteI am also a military spouse who is chronically ill and the parent of an 11 year old in middle school. In 2008 I was diagnosed officially with systemic lupus erythematosus (SLE)... or as most folks just refer to it as Lupus. I was diagnosed during the middle of a 15 month deployment, living in Germany and was working full time. When I flare, I can't even make it to the couch - I'm usually stuck in bed. It's easier now, as we have moved back to the US and have a ranch style house all on one floor. Before, we had a two story duplex on the installation and if I was flaring I usually never made it down the stairs. Luckily, my son was old enough and self-sufficient by the time I was diagnosed so it made things a bit easier - but I have days like you mention above, trying to figure out what we can do when I'm bedridden that doesn't involve sitting him in front of the Xbox all day.
ReplyDeleteWe use technology a lot. Once of the symptoms I have is excruciating joint pain and swelling - mostly in my fingers, toes, wrists, ankles and hips. When I flare, I can't grasp anything - I can't write with a pen, or hold a cup or even brush my own hair or teeth. So, when those days occur, we do a lot on the iPads or my Macbook where it only requires the touch of a fingertip. We play educational games, we sing to my iTunes, we watch videos on youtube or look up things he is studying in school. We do watch tv together - I grew up with tv and movies and music so we do a lot of that. If I feel he needs to actually *move*, we will do something like charades (all be it mostly one sided, LOL), or Twister. My son is also really into fashion. (drives his dad nuts). So he loves to sketch designs so we will pass the time looking at magazines and watching clips of fashion shows or red carpet walks for him to get ideas and inspiration. I'm lucky in that Mon-Fri he's in school most of the day so the parenting is only affected really after school.
Sorry to read about your having Lupus but it is nice to know people can relate. The iPad has come in very handy. I love the idea of charades, be it one sided, something we haven’t done in a long time. Thanks for spicing up our afternoon!
DeleteCarrie
While I do not parent from the couch, I do many things from the couch that I wish I didn't have to. Still, I see what you do and admire your courage. The things I do are things that can wait, work things, etc. Kiddos can't wait and require nurturing and a lot of "right now". You are amazing and and truly #chronicallyawesome.
ReplyDeleteYou are, inadvertently, raising very patient and understanding children in this process, so there are positives to this. I always try to find the gifts in our conditions, and this is one of them for you (IMHO). I am sure that your children are not the "now now now" types of kids we often see in public.
My daughter is 20, I got sick when she was in her late teens, she struggled with my illness and got very frustrated when things were put off or cancelled because I had to stay "on the couch". There is resentment to this day. Had I gotten sick when she was younger, had she grown up the way your kids are, she would not have this impatience with me, I am sure.
I think you are great.
Lastly, I would love it if you could post this blog, and any blogs in the future at www.facebook.com/chronicallyawesomebloggers for more people to see. I think you have much of value to share.
There is also a place in the chronically awesome community here on Google for blog posting if you would like to post there.
Thanks
Julianna
Chronically Awesome Foundation
Julianna,
DeleteI look forward to being a part of the Chronically Awesome Foundation!
Ironically I was the teenager who was resentful that my mom wasn’t willing to drive me (and my posse of aqua netted girlfriends) to the movies, seemed spacy or spent the weekend on the couch. She was just recently diagnosed with Dysautonomia, mostly Orthostatic Hypotension. She had no idea what was going on with her health so I really had no idea.
You have a very good point in the difference between growing up with a chronically ill parent and having a parent become chronically ill while you are busy being age appropriately self-centered. My kids know enough about my condition to put a speech together, they know it is why they haven’t done a team sport in a year and they know ‘it is what it is’.
Sometimes it is nice to know I am right there in my cozy spot on the couch ready for a hug.
This is a beautifully honest post, Bloggy BFF! I love it. Remember that there are tons of moms who sit on the couch by choice and think nothing of it. The fact that you are aware, try to make the best of it AND still parent with grace and enthusiasm shows what an amazing mom you are! You are teaching your kids so many things that a lot of us can only lecture about- grace, patience, perseverence, empathy, serving someone you love. It will all be used for good!!
ReplyDeleteV
I truly adore your story and I can relate in many ways. tho...my spot is in my recliner. usually laying back with an icepack behind my neck. my children are 8 and 4. i developed dysautonomia in 2009 after a very traumatic lumbar fusion. then...not knowing about dysautonomia but having to deal with chronic severe daily headaches and neck pain (which i never had until 3 months after my back surgery) almost exactly one year later i was going under the knife again for a cervical fusion to try and get rid of the constant head and neck pain. needless to say it didn't work, it actually just continued to male things worse. i took things into my own hands and did as much research on different types of head and neck pain and set myself up an appointment with the mayo clinic in jacksonville. still unaware of dysautonomia i went to my appointment and saw a neurologist first who told me there was nothing neurologically wrong with me and referred me to the pain management area of the hospital. they told me that i was suffering from cervicogenic headaches (which i already knew) and also chronic pain syndrome. i refused to believe that was my issue. chronic pain shouldn't cause vertigo, ringing in your ears, severe head exploding pain upon standing etc. so i continued on with my research and got lucky one day by typing in the right words on google and found dysautonomia /POTS. i immediately looked up to see if there were any specialists nearby and i was shocked that there was one less than an hr from my house who not only was a specialist but also suffered from it as well. my kids were around 5 &2 maybe when i became ill...I've only gotten worse over the past few years but I'm lucky enough to have a very smart little boy who totally understood when i told him about certain parts of my illness and about what to do if we were home alone and i were yo pass out. shortly after that talk with him it happened, he did exactly what he was suppose to do. he got my youngest son to do small things to keep him busy and not freak out like getting me water for when i came to and getting the footstool so my oldest could roll me to my back and prop my legs up. when i came to i was on my back, feet propped up, and my oldest was on the phone with a family member...rather calmly saying mommy passed out. i was so proud of him bit i also cried for probably 2 weeks aftet that because i feel so horrible that my little boy has to know how to do those thongs and has to worry about stuff that no young child should have to worry about. but since i have been ill since they were fairly young they understand. that doesn't mean they don't get upset at times when they can't do certain things. but i do try to make it up to them when I'm having a fairly decent day. i just want to thank you for sharing your story and giving me some ideas of a few things to do with my boys. thank you, well wishes, and God Bless you all. :)
ReplyDeleteI hope this finds you! I can assume from the limited doctors that are able to treat us, let alone have Dysautonomia, that you must be seeing Randy Thompson. I drove with my family of 6 from Missouri to see him!
DeleteMy kids are 4, 7, (almost) 10 and 18. It is amazin how they see my health obstacles as pretty normal, I guess it is the normal hey know.
I did want to share an organization with you, Canine Partners for Life. I am in he wait list for an alert dog. They have successfully trained service dogs to not only help people with Dysautonomia but specifically he BP/HR changes before syncope!
I hope you can follow my little space here as I have been emailed, facebooked and twittered some great 'on the couch' ideas and will post about hem as we do them.
Big Hugs!
Carrie
I hope this finds you! I can assume from the limited doctors that are able to treat us, let alone have Dysautonomia, that you must be seeing Randy Thompson. I drove with my family of 6 from Missouri to see him!
DeleteMy kids are 4, 7, (almost) 10 and 18. It is amazin how they see my health obstacles as pretty normal, I guess it is the normal hey know.
I did want to share an organization with you, Canine Partners for Life. I am in he wait list for an alert dog. They have successfully trained service dogs to not only help people with Dysautonomia but specifically he BP/HR changes before syncope!
I hope you can follow my little space here as I have been emailed, facebooked and twittered some great 'on the couch' ideas and will post about hem as we do them.
Big Hugs!
Carrie
This is so honest and real! I'm happily following along...how difficult it must be, you're a tough cookie!!
ReplyDeleteHey Carrie,
ReplyDeleteI often find myself bent over at the waste with my hands placed just above my knees. This helps me to get around the house a bit more. Although it looks a little silly, my family doesn't even really notice anymore.
I'm sure you have tried just about everything but I was curious to know if you use any artificial sweeteners on a daily basis? Of course we all know that they can be bad but I read an article about it causing Lupus, MS type symptoms in some. I thought this was a crock of crap and nothing as simple as taking out my sugar free coffee creamer is going to help my symptoms.
I use sugar free coffee creamer because of my hypoglycemia but per my husbands persistent request, I tried switching to regular instead of sugar free to see if it made a difference. (I use TONS of it BTW. I like my cup of joe to be a cup of creamer with a splash of coffee)
I have been off the stuff for about a week now and whether its the placebo effect or not, I have noticed a huge difference. One of my most debilitating symptoms is always feeling like I am suffocating. I am so short of breath that some days I cant walk from the couch to the kitchen without gasping for air. (this fluctuates. some day's I have no trouble at all.)
Anyway I have found significant improvements in many areas since stopping the artificial sweeteners. Could be a total fluke but I thought it was worth a mention?
I'll keep you updated!
Katie~
http://dysfunctionsjunction.com
I'm so making a couch cushion fort tonight. (Also. Totally rooting for you and can't wait to keep up with how you're doing. Love making blog friends.)
ReplyDelete