Tag Archives: chronic pain

No One Wants to Hear About Your Dreams

I know, I know, but the name of this blog came from a dream, so indulge me, just a little.

I’m not doing so great right now, and my dreams are like slaps in the face.

I guess if you look at them symbolically, then they have evolved from convoluted-dream-speak to STEPHANIE, QUIT BEING A FUCKING DUMBASS AND LITERALLY SMELL THE ROSES!

We took the two youngest kids on a short trip, an hour or so away to a touristy-town, just for swimming and playing and “getting away.” (Thanks to a certain Nana and Grandma for making this happen.)

Anyway, YES. I had fun. YES. I enjoyed being with my family. YES. I laughed, and ate, and swam, and sat in the hot tub, and had an entire fancy lobby all to myself with coffee already made when I woke up.

YES. I was hurting and needed SILENCE after just a short while. NO, I couldn’t carry any bags or take the stairs; shit, I had to LEAN ON A WALL just to wait for the elevator. (The only reason I didn’t sit in the floor is that my 13-year-old would’ve died from embarrassment and then who would’ve helped me up.)

YES. I freaked out a tiny bit at dinner. YES, I actually thought my server walked away while I was telling her my order. YES, I was surprised to find her still there. YES, unfortunately, I tried to explain my confusion to her and my family.

YES. It was hard, and I am paying for it now, and I’m so depressed today that I don’t even know if it was worth it. I keep thinking back…

How happy my son was in his new clothes, laughing and joking and BEING NICE TO HIS SISTER.

How happy my daughter was, laughing and joking and giddy with excitement.

How SELFLESS my husband was (and is) knowing that he would be the pool-toy, the bag carrier, the kid-chaser, the driver, and did all these things knowing he had to work the next day.

It was worth it.

That doesn’t mean I’m any less miserable today. I won’t detail my aches and pains; I will just say that as someone who basically did nothing harder than stand in an elevator as it went up and down two floors, I don’t feel like I should be in this kind of pain.

We got home late yesterday afternoon. My husband was still at work. I was SO TIRED. The 13-year-old and 7-year-old were somehow NOT tired. The 30-minute car nap that almost killed me revitalized them I guess.

So I told them I HAD to lay down and to wake me up if they needed me and I was so tired that I didn’t even go over my spiel that they usually say with me because they FREAKING KNOW, MOM!

I thought I would drowse a little, maybe just lay in bed and rest but not even sleep, or get a quick nap and be able to think again. WRONG.

The kids tried to talk to me at least 5 times in the 3 hours before their dad got home. Once (apparently) my daughter said she was hungry and I replied with, “WHAT? You want me to brush your car?” I know the kids came in my room, I know they tried to wake me up, and I know that I was NOT awake at any moment that I spoke to them.

It sounds funny when they tell me what I said, but to me it’s also terrifying. Is this some new thing that’s going to happen? Do I need to teach my daughter what to do if I won’t wake up, but spout gibberish instead?

I realize that my son is 13 and very capable of taking care of his sister for a few hours. Shit, SHE is capable of taking care of HIM for three hours.

I don’t know what that was yesterday afternoon, I don’t know why I didn’t wake up, I don’t know why I was saying weird shit, and I don’t know if it will ever happen again. I do know that I feel like a bit more of my Mom Badge was just ripped off, and that motherfucker was in tatters already.

This morning I woke up because of a combination of terrible pain and a dream. Yes, I’m going to tell you about a dream. I’m sorry. I’ll keep it short.

I saw all these HUGE, gorgeous flowers on the side of the road. So many different kinds, so many colors, growing wild even though the ground was snow covered. My arms were full of flowers and I was GLEEFUL. Then I turned to go and my heart sank because there was so much snow that my car was stuck. Back to reality.

(Y’all have NO IDEA how lucky you are that I’m not bustin’ out some Eminem right here.)

Then I had a rilllll shitty morning ending with my husband telling me “You don’t know how much that trip took out of you. Maybe your body was just so exhausted that it shut down. The kids are fine. Please take your medicine and lay down for a while.”

*He didn’t say that last sentence but I could see it on his face, so that’s what I did.*

So THEN…yes, another dream. Shut UP! The last one was super short!

This time I’m looking out my window and I see that the sun has just almost reached the perfect point where it covers the whole pool and the rock in the center where I like to lay. I am JOYFUL. I can’t wait to get down there. Then I get a text from a mom friend about our kids and I can’t reply because the buttons are weird and the letters are moving all around and then I’m frustrated and worried. Back to reality.

 I feel like my subconscious has literally “dumbed-down” my OWN DREAMS.

 

SORRY, SUBCONSCIOUS, I SEE WHAT YOU DID THERE.

 

I can’t remember ever feeling as happy as in those two dream-moments.

 

Maybe we never feel that way in real life.

 

Or maybe that’s what joy feels like to “normal” people.

semicolon tat

Broken today, still here tomorrow.

 

 

 

 

 

 

 

 

 


The Spoon Theory

my spoons

Warning: This is not a funny post. It is about chronic illness. I’d really like you to read it. I promise I’ll attempt to be funny next time. I’ve been dealing with a lot of health issues this past week and I’ve felt very helpless and misunderstood. I want you all to know that I am not asking you to feel sorry for me. I don’t want anyone to pity me. I just wish everyone could understand what life is like with chronic illness and the Spoon Theory, I think, is one of the better ways to describe it.

The Spoon Theory basically says that with chronic illness, you start the day with a certain number of spoons, when a healthy person would start each day with an unlimited amount.

Pretend you wake up and you have 12 spoons.

It costs you a spoon just to get out of bed because your entire body is one giant ache and you never feel like you got any sleep. Next you have to walk down the hallway and wake up the boys and get the daughter’s clothes for school. This costs a spoon because this early in the morning you have the most intense pain and sometimes can barely walk. You have to use one hand to uncurl the other hand because they don’t want to work yet. You can hardly lift the coffee pot to pour coffee. You think about asking your husband for help and then feel guilty because he is going to work and you are not. It costs you a spoon to get yourself mentally under control and continue getting the kids ready to go to school. If you made lunches the night before that’s good, but if you were too tired then you have to do it now and that will cost you a spoon because of all the bending and walking and you are still in a lot of pain.

The kids and husband leave for the day and you are left with 8 spoons. The house is a mess. Do you have to go anywhere today? If you do, you can’t do anything else because driving and running errands or just running around town will take all the rest of your spoons. All of them. You will be in so much pain and so exhausted by the time you get home that you will be unable to do anything else.

This day, let’s say you get to stay home. So you do the dishes and maybe start a load of laundry. Take away a spoon. You need to think about your depression and do something positive so you will color or write in your journal or meditate or do yoga. This costs at least one spoon, depending on what you decide to do.

Remember, you haven’t showered, gotten dressed, or even brushed your teeth yet. You get dressed and brush your teeth and you are tired, so tired. It costs a spoon.

You’ve got 5 spoons left and it isn’t even noon. The house is still a mess. If you really, really clean it, it will cost all of your spoons for today and probably some of tomorrow’s. You need to eat but you are so nauseous that you can’t, plus you hate to waste a spoon just to feed yourself. You decide to watch t.v. for a while and rest. You think about taking a nap, but you can’t because you are too anxious and feel like you can’t breathe. It costs a spoon to get your anxiety under control.

You have 4 spoons left. The house is still a mess. You still have to figure out something for dinner or maybe your husband will bring something home. You better have him bring something home, because you will have to use at least 3 spoons to check the kids’ backpacks, sign papers, help with homework, and generally be present as a mother when they get home. You won’t be able to make dinner, and since you’re still nauseous, won’t be able to eat it either. It is 7 pm and you’ve only got one spoon, but your daughter still needs a bath and you didn’t even shower today. You still have to pack lunches and make the coffee for in the morning and your husband hasn’t gotten any of your attention. You feel like a failure as a wife and a homemaker and a mother. You feel so sorry for your family because you don’t have enough spoons to do everything you want to do for them. The stress leads to a migraine. You are down for two days, crying and throwing up and maybe going to the emergency room. This takes all of the spoons for those two days, and possibly some from the third day because you are exhausted after such a bad migraine.

So that’s basically the spoon theory, and basically my life. I didn’t mention allergic reactions, and I think I actually spend more spoons on managing my health and depression, but you get the idea.

It takes all my spoons just to get through a day doing the bare minimum. If I want to take the kids somewhere fun, that’s all my spoons. If I want to go out to eat with a friend, I have to realize that I will not be able to do something else. If I have a doctor’s appointment in the afternoon, I better lay down all morning.

I have a really hard time dealing with my health. It makes me incredibly sad to not be able to do the things I want to do. I hate having to plan my day around what I feel physically and mentally capable of. I hate that I don’t have enough spoons. I hate that by looking at me, you can’t see how hard I fight every day. I hate thinking that people think I am hateful or lazy because I don’t do things and I cancel plans all the time. I hate that I have to budget my energy and my time.

The Spoon Theory was written by Christine Miserandino at www.butyoudontlooksick.com. You can check it out at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Does The Spoon Theory apply to you? If so, what things do you do to stay positive, knowing that you’ll be counting spoons for the rest of your life? Do you find that you judge yourself more harshly than anyone else does? I know I do. Don’t you love my nail polish?

**EDITED TO ADD: I love each and every one of you. I swear I feel stronger with every kind comment and it really means so much to me that you take the time to send me your thoughts. I might cry, guys. You are all my favorite.


PTSD

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Things are not going well here in the land of the lost.

I realize that I’ve been sick so much in the last few weeks that I’ve missed or thrown up my medication more than I’ve taken it so I’m basically free balling here and that doesn’t work well for me.

I keep trying to tell myself to just hang on until I’m back mostly on level and that Depression Lies and that my kids need their mom. But I keep asking myself what is the point to a life where you are always sick, either mentally or physically or both?

I’m so tired of being sick.

I’m so tired of being sad.

This is a pathetic post and I’m done with it.

Here’s some information about PTSD. The bolded parts are from WebMD.

 

Post-traumatic stress disorder can be crippling. Many people think that PTSD is limited to people who have been in war or lived through some horrific act of violence. Those people can and do suffer from PTSD, but they are not the only ones.

I was diagnosed with PTSD when I was 14. Twenty years ago. And I’m still dealing with it today.

From WebMD:

Posttraumatic stress disorder (PTSD) … is a serious condition that can develop after a person has experienced or witnessed a traumatic or terrifying event ….

…PTSD is a lasting consequence of traumatic ordeals that cause intense fear, helplessness, or horror…

…Most people who experience a traumatic event will have reactions that may include shock, anger, nervousness, fear, and even guilt. These reactions are common; and for most people, they go away over time. For a person with PTSD, however, these feelings continue and even increase, becoming so strong that they keep the person from living a normal life.

Symptoms of PTSD often are grouped into three main categories, including:

Reliving: People with PTSD repeatedly relive the ordeal through thoughts and memories of the trauma. These may include flashbacks, hallucinations, and nightmares. They also may feel great distress when certain things remind them of the trauma…

Avoiding: The person may avoid people, places, thoughts, or situations that may remind him or her of the trauma…

Increased arousal: These include excessive emotions; problems relating to others, including feeling or showing affection; difficulty falling or staying asleep; irritability; outbursts of anger; difficulty concentrating; and being “jumpy” or easily startled. The person may also suffer physical symptoms, such as increased blood pressure and heart rate, rapid breathing, muscle tension, nausea, and diarrhea.

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A problem I have with PTSD is that I feel guilty that it is still a problem. I feel like I should be “over it” by now and sometimes feel like my friends and family feel that way too. Feeling guilty for being sick doesn’t help, and in fact only adds to my anxiety and depression. I don’t know how to “fix” myself. I don’t know how to be better. I would not choose a life of pain and fear if I had the choice. I did not choose to have fibromyalgia, chronic debilitating migraines, chronic pain syndrome, or the Alpha-gal allergy anymore than I chose to have depression, anxiety, and PTSD. These are all things that I fight through every single day. And it is a fight. Right now, it’s a fight that I feel like I’m losing.

I just have to keep putting one foot in front of the other until I come from under this black cloud. Eventually I will be in the sun and I will be proud that I made it through again.

If you are struggling too, tell me about it. I probably don’t have the words to help, but I can listen. If you are happy, tell me that too. It will help me see through this dark.


Deep Thoughts, Brought to You by the Easter Bunny

Have you ever heard of Behavioral Therapy?  Well, in a nutshell, it’s supposed to teach you to think happier so you will be happier.

However, I am an asshole, and as such, I usually think not-nice comments in my head when people suggest that I should “think happy thoughts.”

But.

source:  sodahead.com

source: sodahead.com

I just had something of a breakthrough here, sitting on my couch in my second day of the same pajamas, eating leftover Easter candy, and hurting so badly that I curse at myself when the phone rings or I have to pee because then I have to hobble around and that hurts even worse than typing, which is really quite painful since my hands, wrists, elbows, and shoulders are all screaming.

Makes me wonder why I’ve spent so much money on therapy, if I can just come up with this shit on my own and not have to shower or drive.  Anyway, I presume you are on the edge of your seat?  Dying to know what I’ve discovered?

Okay, okay, calm down.

I was sitting here, as mentioned above, and I was feeling really, really shitty about not getting anything accomplished today.  By that I mean I’ve done a load of laundry and made a couple business calls and that’s it.  Oh, and I closed the dishwasher so the kitchen would look cleaner.

So I was basically giving myself a silent talking to and just, you know, berating myself because I’m not able to do all the things that I could do before.  I was thinking about all the time that is just gone, disappeared, because of the chronic migraines.  All the time that I will never get back, spent recovering from an allergic reaction or a migraine or from a trip to the store.  And I was thinking about all the time lost, spent just staring at the wall because I was so depressed that doing anything but that was just impossible.  And about all the time I’ve wasted crying, and how feeling so bad today (physically) makes me want to cry more because it makes me feel worthless and like a failure when I’m not able, either physically or mentally, to do what I’ve decided needs to be done.

Then today I thought, hey, at least I’m not in bed with a migraine.  If I had a migraine right now, or an allergic reaction, I’d be throwing up and maybe even have to go to the emergency room.  I wouldn’t be able to talk to the kids when they get home, or see my husband, or write anything, or watch t.v. or anything except throw up, try to breathe, hold my head, and cry.

So, really, today is not so bad.  I mean, I’m still in a lot of pain and I’m not going to get any housework done, make dinner, or do anything that means I have to get out of this heated chair, but…at least I’m able to be in this heated chair.  My kids can come snuggle me here and their voices won’t make my head explode.  I’m writing this, and although it’s no masterpiece, I’m pretty sure I’m making sentences, which is more than I’m capable of some days.

So that was my breakthrough.  On days like today when I’m feeling bad and feeling guilty for feeling bad and for what I’m not doing, maybe I should instead think about what I can do.

This is weird and I kind of feel like smacking myself.  I think I just gave myself permission to relax.  Or, maybe I’m high on sugar and chocolate.  I don’t know, and I don’t know how long this strange phenomenon is going to last, but I am glad it’s here for now.


I can give the bird left handed, so there.

Oh Chronic Pain, you evil, sneaking, rotten bitch, how I loathe you.  My dinner sits uneaten because I can’t use my right hand.  What fresh hell is this?

It’s not enough that my bones hate me and plague me with random deep agonies Every. Single. Day?

It’s not enough that my skin burns for unknown reasons and requires me to put ice packs on my feet to fall asleep on those nights that I don’t have to immerse the bitches in boiling water to make my skin stop crawling?

It’s not enough that I lose at least a week out of every month lying in a darkened room, hoping someone will just shoot me or that my head will finally spontaneously combust?

Chronic Pain, you miserable slut, is it too much to ask for you to just pick one part of my body to torment?

*Please note that I realize there are worse things I could be saddled with, I am sincerely grateful for all that I have, and none of this shit I’ve got is going to kill me.  So everybody just calm the fuck down.


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