Monthly Archives: November 2013

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.

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!

I didn’t realize how blind I was

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How do you distinguish what you believe from what you are told you believe?

I could tell you exactly how it all went down. If I really understood that. I don’t really claim to understand.

I am not even really sure I am completely sure where I stand on some aspects of it.

I was raised in really what you would classify a christian family. We went to church, sometimes.  We were more like on again off again but always on holidays Christians.

So it came as a surprise to me when a friend of mine who happens to be Buddhist said that she was constantly having to either shield her kids or confirm their beliefs after a lot of really standard activities. Well what I considered standard. Even people, well meaning and good intention-ed people, just saying “we will pray for you” would throw her kids on how to respond to that. It had not even occurred to me to think about that.

It made me think of what we were doing as parents. Were we giving our daughter the choice, or were we just telling her how to believe. It was one of the reasons we left the Baptist church not the only reason but one of them.

I started looking at how I particularly believed.  I have posted it before but I found Beliefnet.com’s Belief-o-matic very helpful. It broke it down into twenty questions that I could take one at a time and really reflect on how I felt.

Its also not one thing I took and then was done with. I often go back through and answer the questions without looking at or trying to think too closely about how I answered it last time. I get pretty much the same results. It has turned into a way to assure myself I am being true to who I am personally and not who others want me to be. That my thoughts are my own and not spoon fed to me.

It was one of the reasons the Unitarian Universalist Church appealed to us. The kids are not just taught about one way of thinking. They are encouraged to explore all paths and all religions. To not pass judgement on anyone’s way of thinking as wrong.

For some people they never question what they believe or how they believe. That is completely and totally okay. I am not saying that is wrong. In fact I did that for many many years.  The world would like us to believe that we fit in nice neat little boxes. That if we classify ourselves as Christian, Buddhist, Muslim whatever that we all believe exactly the same things. When if you take the time to analyze it and read the texts and go over the history very rarely does that actually happen.

The more my eyes have been opened the more I realize how blind I was. It is astounding to me as I had always considered myself very open minded. So it appalled me to realize some of these things.

The longer I have been exploring how I believe the more I realize I will probably never stop adjusting exactly how I believe.  The more I have explored the more my curiosity has been awakened. The more you explore the more you grow. So for me, I will keep exploring, I will keep asking myself the hard questions of how I believe ,making myself squirm in my seat if I have to. Not many people will go there. Will say I am going to keep exploring things that make me uncomfortable to find out exactly how I feel about it and why it makes me uncomfortable.

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.