Category Archives: Blogher NaBloPoMo

The insomniac waltz

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Fibromyalgia brings many joys. Like learning how to do the insomniac waltz. A mixture of sleep deprivation and pain.

 

Get comfy in bed. Got to go pee. Get up to pee. Get comfy in bed.

Five minutes later flip to your left side. Close your eyes again. Deep breathes.

Sleep for maybe thirty minutes. Wake up.

flip to your right side.

Sleep for maybe an hour. Wake up

lay on your back.

Nope lay on your stomach.

Nope lay on your back. Listen to deep sleep meditation. Listen to another one.

Get up have a bowl of cereal.

Count how long its been since last medications. Take some more.

Lay back down. Play Facebook games until can’t keep eyes open.

Go through relaxation techniques. Fall asleep somewhere in the midst.

Sleep for two hours. Not a second more!

Wake up stiff and sore.

Change positions. Scroll Facebook.

Fall asleep.

Thirty minutes later……

alarm goes off for the day.

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But it’s Black Friday

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Me and my big mouth.

I had to say that I was going to look for the Christmas dress early this year.

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Every year we get a Christmas dress.(and an Easter dress) .

I tried to get good pictures of her in her dress in front of the tree.

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Sometimes it worked.

Overtime though I have found that if I get at least one good picture I am doing good, if it happens to be in front of the tree…so much the better.

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I have however figured out that I need to get it as close to December 1st as possible. As it increases the chances of a good picture, or the time to go take good pictures

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Maybe we can also have some fun with taking some glamour shots this year too.

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These are just two of the pictures. I took 46 that year. I have learned more about camera phones, more about cameras in general and think maybe this year I might get some really good shots.

But first we have to find the dress.

This is actually the one time (okay at Easter too) that I typically don’t let her pick out the dress. This is one time I normally put down my foot and pick the one I want.

I have taken her in the past. That was however when it was easier to convince her to see my point of view.

Now she has her own “fashion sense” .

I know that there is a day coming where she will refuse to wear something I picked out.

So I opened my mouth and said I wanted to get the dress this coming week.  If I get it this week or maybe  even next week I won’t mind spending thirty dollars on it as she will wear it through at least February or longer if I am lucky. Any later than that the price I am willing to pay will go down. Because lets face it …She will probably want to wear it everywhere and climb trees in it and probably roll in the mud too.

Now its all I am going to hear until I get THE DRESS.

Then it will be I want to wear it EVERYWHERE.

You would think after so long I would learn not to open my big mouth.

 

A liquid Thanksgiving surrounded by a festival of lights

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Okay so that probably won’t happen.

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Probably.

It is the first time in like a really really really long time that Thanksgiving and Hanukkah have overlapped. Like a really long time. Like it hasn’t happened since the 1800’s.

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We are going to the Jewish Community Center for our Unitarian Universalist church’s Thanksgiving dinner. My in laws, who are mormon, are coming with us.

I am just thankful today that I don’t have to do all the cooking and all the cleaning before and after.

So from our family to yours.

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No matter what you believe here is to hoping that you hug your family a little tighter than necessary and remember that no matter how crazy or insane to be Thankful for what you do have. Even if it requires a Xanax and a glass of wine to endure.

The task I dread the most

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Venturing into my daughters room to sort through her toys and books.

You know the nitty gritty every nook and crany search.  Every drawer, every basket, every container thoroughly searched and cleaned.

So this is what I walked into…….

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It took me two hours…Everything is back to nicely organized containers…I did do away with a whole storage area that she wasn’t using properly. We have a church give away coming up that I will save that and the books to donate to. I gutted her book shelve and anything below a first grade reading level that wasn’t a keep sake book went in the bag. The books we are not keeping filled a trash bag.

There was a lot of…what the hell? No…no I don’t want to know.

Of course I had the TV on Criminal Minds and even one episode of CSI Miami ….I need company you know.

This is what it looks like now…

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And to think I do this almost every six months. It is not that she doesn’t clean her room. She does. As good as any eight year old can. I try not to tell her exactly how to clean it. Then I go in and do a through job and take out stuff that she is too old for now and what not. Plus it is typically to get ready for new toys before some holiday or another. So I took some OTC pain meds and two hours later they are no longer effective but her room is spotless. Every little corner.

So now its done….six more months til I have to go through that again. pheew!

Sleep clean sleep

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Last night I was suddenly overwhelmed with exhaustion. It wasn’t even a choice. It was you are sleeping now.

I slept for about an hour around six pm. I vaguely had an idea that it was after five. That was about it.

I was able to get back to sleep and sleep until 10:30. By eleven thirty I accepted the fact that I was now awake.

Instead of trying to force sleep I got up. Did a little laundry. Did some dishes. Wiped down counters. Swept the floors. I didn’t think I just did it. Well I did think a little bit. I wanted to vacuum as well but by this time it was almost one am. Probably not the best idea.

By two am I was back in bed.

Sometime around three am I fell back to sleep.

Sometimes you just got to go with what Fibromyalgia and its symptoms gives you.

Sure I would rather have been sleeping. However that wasn’t happening. Tossing and turning is exhausting all on its own.

I am fairly certain that the few hours I did sleep. I slept better than if I had tried to stay in bed and force sleep.

Of course, this only comes from trial and error. Meaning there have indeed been nights that I tried to force sleep.

Life with a chronic illness, add or two or three, requires some trial and error learning.  It is an ebb and flow that takes some practice to finesse.

Sometimes it just throws you lemons and you don’t get what it is trying to tell you. Frankly sometimes I don’t think it really knows what it is doing. Fibromyalgia is a fickle fickle illness.

Serenity Sunday 11/24/2013

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So….Serenity. You have been very elusive to me this week.

Princess P always always brings me serenity.

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and being able to watch her breastfeed is truly one of the most peaceful things about this past week.

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Then there is the kid… The one the only the kid.

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Serenity really seemed hard to find. I felt like I had hardly taken any pictures and for me it was less than normal but when I looked back through them. Serenity was there. I just didn’t notice.

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From playgrounds at sunset to friends to chat with to the cats I adore…it was there.

 

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Sometimes Serenity is just admitting you are grumpy.

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It took walking home from church today for it to hit me. Not once this week did I take a walk just by myself. Not once did I make sure I was taking care of myself. Not once did I make sure I was centered.

So not surprising that I flared Friday Saturday and part of Sunday.

When I stopped to look I found the reason.

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Next week I will do better. Even if I have to schedule it in.

If you thought it was one and done you were wrong.

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So a few months ago….

we did this…. Go read it … I will wait…https://chronicallysickmanicmother.wordpress.com/2013/08/28/depressedbutdressed/

It was collaborated with  It’s not my workout. The hardest part about depression is getting out of bed and getting dressed.  It doesn’t have to be a glamour shot , it doesn’t have to be your best selfie ever.  It is hard at first I know. I struggled with that too. Now its not so hard. It takes thirty days for something to become a habit. I still forget so if you miss a day or two or three its not a big deal we understand. We get it. Just start up again.

http://www.itsnotmyworkout.com


Well guess what…We are still using that Hashtag.  The stigma still exists. So we are still getting the word out.

The fun part is…She doesn’t even know I am blogging about it again today!!! Its a surprise! Shhhhhh!

This is the new news about it… It is really quite exciting.

It’s Not My Workout

I’m excited. Now, when you post your #DepressedButDressed pics on Instagram, you appear on my Facebook page, and directly on my blog!! I get to show you off and you get to inspire others!
People with depression, like me, have a hard time with the not so simple act, of getting dressed. It could change your day and mine, so this hashtag is a fun little motivator to GET DRESSED. You don’t have to look stellar, you just have to be dressed in case there is an emergency situation or an unexpected visitor drops in. I have 178 pics so far. Will you join in? Go to Instagram, take a snapshot of yourself and add #DepressedButDressed. See you there AND here 

so here is that link

https://www.facebook.com/pages/Its-Not-My-Workout/507585835962114?sk=app_267091300008193&app_data

Dear Significant Others

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Many people have contacted me asking for advice about relationships and chronic illness. I have discussed this subject with a lot of you. This is what I heard. This is what I know. I am not an expert. What works for me may not work for you. What works for others may not work for me. What we can do is spread information. We can share ideas. This is the start of it. I hope to have more blog posts about this as we continue to get feedback.

Dear Significant others

We know you work hard. We know you are trying. We know. We see it, even if we can’t always manage to acknowledge it.

We understand that most of  you came into these relationship with the expectation that things would be at the very least split fifty fifty.

We get that. We understand that our illness is robbing you as well as us. We know it scares you as much as it does us.

We still need and want to be loved, to be shown that you love us still.  We understand that you may be struggling to find ways to do this that also works with our chronic illness as well.  There is a learning curve for you just as there is for us. It’s okay to tell us that. It’s okay to say , “I don’t know what to do but I am trying.” We really don’t expect you to be perfect. Really.

Sometimes we are not ready to answer questions about what a new diagnosis or symptom means. Please know that it doesn’t mean we aren’t touched you asked. We are just as frustrated that there is something new or different to adjust to again. It means a lot when you take some initiative and look up information. Don’t stop if at first our response is to snap or brush it off. Sometimes we can only absorb so much. Just like you.  Don’t stop!

If we were good at telling you what we needed you to do to help us before and now we are not…..we need you to be extra observant. We need you to see what we can’t say. We know that its not fair. We know that it is frustrating. If last time we needed you to do the dishes look and see do they need done now? We know this is a learning process. We really do deep down. It is not always so easy to express this.

Ask us if there is a good time to discuss what is going on, discuss how we can help, discuss how you can help us. In truth we need to sit down and discuss it. We need to mutually agree to leave feelings at the door. This discussion needs to be about what we can’t do and you can do. This discussion needs to be about what you can’t do and we can do. This discussion needs to be about compromise.

I am not going to tell you what to do to show love and support to your significant other. This is something that is truly unique to each couple.

I can tell you what won’t help. I can tell you what doesn’t help.

What doesn’t help is every time we say we can’t…we receive an attitude. Or worse no response. We can’t communicate if we are always rebuffed. We aren’t saying you can’t have an attitude here and there. If it does happen, if there is an issue, come back later and try and communicate. The fact that you had an attitude is not the issue for us. We get that. Come back! Talk to us! We all have our moments, we get that.

There is a time and a place for sarcasm. However if all we are getting back is snarky comments, degrading comments, negative comments. We are pretty good at doing this to ourselves. Again I am not saying this can’t ever happen ever. It is going to happen here and there. A balance is what we are looking for. Remember communication is key. If it is all negative……

What doesn’t work is telling us all the time that we are over reacting. How would you feel if you were experiencing these symptoms? How would you feel if someone told you , you were over reacting? On the same note, please do remind us to put ourselves in your shoes as well.

The more you communicate and ask for communication in return the better it is.

So….you thought that was all it was didn’t you… Communication. Hmm.. yeah there is also this other thing called sex. Generally people with Chronic pain and or illness or both are not interested in it. Generally. There just isn’t much we can do about that. There isn’t much you can do about that. It happens.  So…you know in high school when they talked about how to practice abstinence…..yeah…this time its just a tad different. The more you work as a partnership,especially those of you with kids in the mix too, the more likely it is to happen. Not always but its a great start. It really really really truly is not personal. It does not mean we love you less. Sometimes its hard to talk about because we are selves are frustrated by it as well. We want to want it but its not always possible. It means when it does happen, be gentle be understanding and cherish it for the gift that it is. Because remember  it is a gift. It is not a right of a relationship.

It is not all about either of us. Its a team thing. A partner thing.

I got a box!

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Nevermind the fact that I asked for the box to be sent to me.

I GOT A BOX! It was like Christmas came early!

I tore into it not unlike a kid at Christmas time.

And then the Mamalode exploded on my bed.

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I had to spend some time pouring through them. Laundry and dishes obviously had to wait. This was way more important.

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Not only was I excited by the back copies but I also was touched by the card and that inside it was handwritten. It is rare anymore that anyone anywhere sends things handwritten unless they are among friends.

As Mothers we are pulled in so many different directions all at the same time. This is a perfect magazine to have in the car to flip through while sitting in carline. There are quick little reads as well as longer articles. One thing that really caught my attention was the last page, a poem by a child typically a preteen or teenager. I love seeing things from their perspective.

So I took some to the baby rhyme and sign at the library and it was a pretty big hit. Some of the kids were actually a little more interested in the bright and colorful candy on the front…ooops.

Princes P says it tastes just fine.

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So I read some as I was waiting for the girls to get out of school. I kind of just flipped through but got stuck on one about pregnancy loss. It touched me deeply and it took all I could do to not cry in the car. There is a little section in the front called “Because I said so.” very easy to read a submission here in under a minute. Truthfully a friend of mine keeps her Mamalode and other Mommy magazines in the bathroom. You know sometimes that is the only few minutes we mothers get to ourselves.

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The girls were pretty enthralled with the back copies. There were a lot of discussions about pictures and it turned out some of them were advertising pictures. Something that as a Mommy I passed right over.  There was some discussion about what a trailhead was….which quickly digressed into what happened at school today.

However they were drawn back after our trip to the library, yes my second trip today, for reading with the dogs. I looked back at the stop light to see this in the back seat.

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I am pretty sure however from the amount of giggling that they were whispering amongst themselves and using Mamalode to “hide” from me.

On the Facebook page for this blog I call our followers Stalkers. Stalkers in a good way. We support each other and laugh together. This is exactly what Mamalode does as well. So go be a good stalker and follow them everywhere. I do and its nice to see things pop up in newsfeeds and whatnot amongst all the other things that are in my newsfeed. This is one that feeds me. So that I can keep feeding others.

So get stalking already!

Instagram: http://instagram.com/mamalode

Twitter: https://twitter.com/Mamalode

Facebook: https://www.facebook.com/Mamalode

Pintrest: http://www.pinterest.com/mamalode/

Youtube: https://www.youtube.com/user/MamalodeTV
and of course good old fashioned online website :http://mamalode.com/

You don’t have to agree with my labels, They are mine.

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Labels can make you feel vulnerable….exposed…unsafe.

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Labels can make you feel happy….secure…comfortable.

Labels can change and turn and no longer apply to us. Labels can stay the same and never change.

Its how we look at it.  It’s okay if one label offends you but another does not. It’s okay to say I prefer the term… It’s okay to not be okay with a label. It’s okay to be okay with a label. How you label yourself does not reflect on others.

I personally label myself in the following ways : Woman, Wife, Mother, Photographer, Writer, Readaholic, environmentalist, chronically sick, disabled, Chronic pain patient, survivor, Ecologist, housekeeper,babysitter, nail-biter, Wiccan, teacher, animal lover, Rule enforcer, mental illness patient, giver, lover, Driver, chef, Unitarian Universalist, Friend, Democrat, naturist, explorer, typist, volunteer, caretaker, listener, talker, activist .Over protective, Paranoid,OCD.

Some are good, some are funny, some are touchy subjects. They are also labels. I am actually okay with every label I have up there. Will those labels be the same in five years? Probably not. Some will stay, some will go , New ones will be tried out. Old ones discarded.

I was raised with the idea that you only had a few labels and you kept them for the rest of your life. So this has been a challenge for me. I tried not liking Labels. Nope I felt undefined. I didn’t like it. Not one little bit. I may change my definitions, but I like them.  Others do not. That’s okay. They are not about them. They are about me. This is one area that it truly can be ALL ABOUT ME. I have found the more I am okay with change the more I grow. I want to keep growing.

I typically don’t have a filter. If I think it…it comes out of my mouth. Sometimes it puts people off. That’s okay too. Sometimes though it starts open honest conversations. Sometimes they are about labels that people think its not okay to talk about. (Whispered shockingly) Especially out in public.  When my filter is hardest to even attempt to control is when I am also curious about something. Its hard sometimes. I feel like I have just said. Darth Vader is my father or Lord Voldermort. Sometimes it offends people and they never talk to me again. That’s okay too. Its who I am. I am okay with that. It makes me value the conversations that go very well  all the more. When I meet someone else that asks the hard questions or makes me think about why I said that or why I did that….watch out…We are often fast friends.

I know some people who are offended by certain labels. Who are offended for me for certain labels. They would never want THAT label associated with them. That is okay too. Some people don’t like the tidy little corners that Labels can put you in. For me, I need it.

Even if they are constantly changing and evolving.

Add some more labels to me……changer and grower. Some people are okay with not changing, not growing. I am not one of those people.