Monthly Archives: May 2013

It’s going to be one of THOSE days…….

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Some mornings you just know…..From seconds after waking up….it’s going to be one of those days.

The universe is going to test your every nerve and typically it’s going to happen in the first five minutes of being awake for the day.

The least it could do is let me have my coffee first……maybe even just a sip of coffee? Please?

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So this morning I woke up…..at six thirty seven. The kid actually slept in a bit. Her normal wake up time is like five forty five…I am not sure who’s dna that is but I can tell you, it’s not mine.

I fling my hand out towards the husbands side and pat him. Umphf….Go get my pills. and some water….Sigh. Then he is suddenly poking me..here take them before I collapse back in bed.

BEEP BEEP BEEP BEEP…,,,,WHAT…WAH…Oh…crap…seven am. Okay. okay. Im up Im up. Smack hubby again. Coffee. I need coffee.

I swear it was two seconds I closed my eyes…there he is again with my coffee.

He truly is the best!

Okay slurp slurp slurp. We are now approaching from steamrolled zombie to subhuman.

Every muscle hurts, Every joint is screaming. I really don’t want to move. My Tmj is flared because apparently I have been gritting my teeth most of the night….We have tried guards. I am super talented at removing it, while sound asleep. I think when I had the fourth bruise from sleeping on it I gave it up.

Whats today. Oh…oh no…Oh crap….I can’t feel like this today. ….not today. Today is back to back performances at school and a lot of walking around.

Walking requires moving. I really don’t want to move….not even a tiny little bit.

Okay chin up buttercup…peruse Facebook a bit ….slurp down a bit more coffee….Sigh. Okay…time to get up.

Clothes..I probably should not wear the nightgown to the performances….probably. Oh look….my jeans? yeah they are still in the washer. This is what happens when I try to get it all done in one day…..I always tell myself I will start with my clothes. They are almost always last.  Okay so slacks.Slacks will have to do.

Somehow we make it to school on time. Barely. So now I can stroll over to the office and get my name tag. Drinking the last of my coffee on the way naturally.

There was a nice pause of time to talk with other parents.

First performance.

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Holding up my phone to take pictures was making my arms scream bloody murder but I was getting pictures dammit. Fibromyalgia wasn’t going to rob me of taking pictures of my baby!

Okay Race the kid to the bathroom…..change her clothes….back out for her class performance. I was probably out of my chair five minutes but my body was so thankful we were sitting again.

Truthfully after her class performed for the most part I hung out in the back. Helping a friend with her baby which also gave me the opportunity to stand and sit as needed.

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Mainly I try to focus on whats going on. Not what my body is saying to me. Screaming at me. Beating out in rhythm to me. This is where denial actually can be helpful. I can’t hear you….lala la la la la la.

Walk walk walk walk back over to her classroom. Tour her room, tour her friends room, tour another room. Snacks! Yes! Sugar! PLEASE! I also totally snarfed down some blackberries and apples and some good cheese and pita too. However the cupcake and rice crispie treat is really the main reason I was able to push through and get back home.

Walk in the house. Bee line to the medicine bucket.

I survived.. I was there for her. That was what mattered. Thats what she will remember. She might later look back and realize I was in pain. Probably not til she is an adult. However I think that will just make it mean even more to her. I try to keep this in my mind, Not the denial from SSDI, not the negativity of others, just remember we are making memories. Memories that we hope later they will cherish. So I should probably spend the rest of the day in bed. That’s actually not too realistic today. However I will take at least two hours to just rest. Possibly I will recover a bit.

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I did manage to drink almost a gallon of water already…Good stuff. So looking at the positives. Not the negatives. Now if only I could get my brain to shut up so I could actually rest!

 

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Are you really what you eat?

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Recently I was told that I was making myself sicker by eating snickers and Mt. dew. It was a snap judgement of someone who really doesn’t know me. I am not defending myself here but explaining why in a way she was right.

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It did however start me thinking.  So many people don’t realize how much my eating habits have changed. How much I have researched food. Are we really what we eat?

In many ways yes we are.

Sugar being the number one enemy of people with Chronic illnesses. I freely admit that many times I use it to push myself through things I need to get done.  It gives us sometimes just the psychological belief that it is helping.  Some days, its a whatever work approach. I get that.

I know there is a difference between types of sugar. I know the sugar crash can be extremely hazardous for someone with Chronic Fatigue. We are already so tired that an additional reason for exhaustion is not needed. Sugar can and will suppress the immune system. Something we seriously don’t need. Sugar makes the muscles less elastic , makes them hurt more. Like we need more of that!

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At home we have fresh fruit, fresh vegetables. We use a lot of unprocessed foods in the house. When we grocery shop we look at sugar constant how much additives and preservatives in what we are buying. Soda is not something we typically have on hand. Thirsty? Milk or water.  Our treats are typically juice, not from concentrate. Fresh squeezed is best. We actually live within walking distance to an orange grove that sells their juice. One thing Floridians are serious about is their orange juice.  Add to the fact that I can’t eat any thing with corn products in it. My daughter can’t handle lactose.

The one other area I have trouble with is Carbs. I love carbs. I adore carbs. I know carbs raise sugar and not necessarily in a good way.I have a hard time with limiting bad carbs. Have you tried to find bread without corn products in it?  I was shocked at how many had High Fructose Corn Syrup in it. It took us a long time to start eating and liking the good grains. Its still a process.

We are really lucky in that neither of our allergies are life threatening. They are currently more like intolerance’s. However I know from past experience that intolerance can quickly go to anaphylaxis very quickly.Its happened to me before.

I have taken years to get myself to eat foods that are good for me. I didn’t like the taste most of the time. It was a work in progress. I wasn’t always happy about it. It took  many times going back through articles I had found. Reminding myself over and over why I needed to do this.

The funny thing is. The more I ate healthy and the right foods. The worse I felt when I ate stuff that wasn’t good for me. Donuts, Mt. dew, Snickers. Yup. I love them. They just don’t love me back so much anymore.

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I am not saying this is solely the reason you feel bad. Its not solely the reason I feel bad after eating such foods. Typically if I have a need to eat these things I am typically also pushing myself past what I can handle.

I hope that the changes we have made set my daughter up to eat and enjoy much healthier foods. To understand that food can be healing and good for you.  To understand that she must balance the bad foods with the good foods. I hope I have taught her enough “tricks” to eating sugary foods. We have a rule that sugar comes after protein. That if we have juice we have twice as much as water. I hope she has picked up on the little ways to boost her immune system so she won’t spend as much time sick in bed.  I feel little triumphs when she asks for green juice when she is constipated.  When she asks for kefir when her tummy is bothering her.

There are many hidden dangers in the food that is available now. I can only imagine what it will be like when she is older. I imagine it will be harder and harder. I hope she will fall back on reading labels and ingredients. That she will fall back on if you want fruit, buy fresh fruit.  I know what was fairly easy for my mom to avoid in foods for me is now not so easy. I can only imagine what she will face when she has a kid.

For years I didn’t believe alot of the information out there about food. I would try going without these foods and it really didn’t seem to make a difference. I received a crash course in going lactose free when my daughter developed an intolerance to it. It takes at least a month for lactose to exit your system. Once I realized that, I realized I had not given the diet changes long enough to actually work.

Are we what we eat? Sometimes we are.

 

You can’t force inspiration.

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You may think this is about writing. In a very small way it is. Mostly though, its not

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Its about people, the people that end up inspiring you. Its about the people who support you without even trying.

Sometimes it works to find a quote that really speaks to you and let it inspire you. Sometimes it lasts for years and years. Sometimes not.

Sometimes you can say this is going to be my inspiration.

Sometimes you suddenly realize that there is a person who is inspiring you to be better, to strive for better.

They come along at just the right time. I have two friends that do this for me. One I have never met in person. I have followed her blog and we have “known” each other for years. It has only been recently we have connected and almost channeled each other. I love her positiveness. I love how she doesn’t allow herself to stay grumpy.

As someone who would describe themselves as a mix of Eeyore and Piglet…I never thought I would enjoy the company of Tiggers. Then I basically married a Tigger.

Sometimes your subconsciousness knows what you need long before you admit its what you need.

I have another friend that I would never have met had our kids not made instant friends. She understands me and accepts me just as I am. She allows me to be who I am, She frequently will tell me you are allowed to feel that way. Whew. What a relief that gives an anxiety ridden person. She centers me when I am a mess. I have called her in complete full out sobbing tears. My anxiety helps her make better decisions. Never thought I would see much positive use of my anxiety. It helps her see more sides of a decision. Anxiety tends to let me be more creative as well which opens whole other doors.

I find myself thinking. What would they do? If they had this happen what would they do. I know that seems to others to have started with Christianity and Jesus but really, it applies to anyone who inspires you. If they make you stop and think, repeatedly , and strive to do better to be better, then they are your inspiration. Sometimes you don’t want them to be. Sometimes  its not who you thought it would be.

I will freely admit I often thought of what they would do long before I realized they were inspiring me. I found myself doing small things that I knew they would approve of. Like picking up the dog’s poop even if it is on the side of the road no one walks on and no one will notice…I notice.  Like deciding I have been grumpy long enough and let others bother me long enough, Time to do something flareworthy.

I hope my daughter doesn’t have the same struggles that I have. I hope she has long lasting supporting friendships. I hope she has people who conscientiously support her. Who inspire her. I hope she looks for inspiration. I hope she searches for it.

For a while self analysis made me squirm. It still does sometimes. Normally the more I squirm the more I need to look at why.

Flareworthy.

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This is a short post….

Am I going to let someone’s rude comments who doesn’t know my life bother me? NO….well maybe for a few minutes.

I went and got a Mountain Dew…Its my comfort drink…

Then I decided if I am going to be bent out of shape from stress…Then I am going to turn it into a flareworthy experience.

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We have a nest of woodpeckers right outside of my bedroom window…Some mornings…It is not a joy!

So sat on my car….muscles burning…and trying to be as quiet as possible…

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Not the best pictures…But shakey muscles and a phone camera…..

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They really aren’t horrid. My daughter and I had a good time watching them.

I don’t think I can complain anymore about how much she eats..We couldn’t tell if there was more than two parents bringing food but I don’t think it was a full five minutes between food. Woodpecker parents also apparently have picky eaters…They flew in with a red berry….only to fly off with it. Squished bugs was what this one wanted. Perhaps there is more. There nest is actually a good six to twelve inches down inside the tree. 

Flareworthy time.

 

Hug them a little closer today

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Its one thirty in the morning and the more I tried to get back to sleep the more the news report about the tornadoes in Oklahoma was on my mind. I think it has to be one of the top five of parent’s worst nightmare. Not only not being able to get to your child but to then loose that child. There are now also children without parents. My heart just weeps for these parents and these children.

Tomorrow well, actually it would be this morning, when I drop my daughter off at school. I plan on giving her extra hugs and kisses. The radio we normally have on to NPR will be off. If only to protect her from hearing the news just a little longer.

I have lived through hurricanes all my life. I know how devastating those can be. I have only thankfully seen tornadoes from afar and never been directly impacted by one. However having seen hurricanes I can understand how quickly damage can be done by tornadoes. Tornadoes are actually one of my triggers for panic attacks so I am really not surprised I am awake in the wee hours of the morning.

I have taken more medications to help alleviate the panic attack and just keep repeating to myself I will hug and kiss my daughter repeatedly tomorrow. No matter how she squirms and says MOM your embarrassing me. No matter how much my collar bones hurt , no matter how sensitive my skin is to the touch.

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For those pains are just so very fleeting compared to what some parents will be dealing with in the morning. So hug them a little closer today and cover them in kisses.

Are you okay with you?

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Its a question I keep coming back to.

Anxiety makes sure I visit this subject frequently. I really think it has an agenda…..Make her doubt herself and her ideals at least once a month…..at least!

I have a friend that when we hung out last time told me I was allowed to be paranoid.  It came up in conversation over car seats/booster seats and the like. I am not only not ready for her to be in just a booster but I am incredibly anxious about it too. I am good with if she is just going to a friends house in their car or the like. Get rid of the carseat(of some kind) instills complete and utter panic in me.

Have we ever really just given ourselves permission to be who we are? Do your friends ever give you permission to be who you are?

I know I am paranoid about alot of things when it comes to my daughter. I know it has a very weird logic. I may be completely paranoid about one area and completely unfazed in another.

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Its not something that we typically stop to think about. Its not something that I would put up there on my list of why I am friends with a person. It might be why I decide a friendship is not worth the effort anymore though.

So as I drove home I began to think (this is how alot of my blogs start, driving or walking) am I okay with me?

Am I okay being paranoid? YUP I sure am. I know it causes way too much grief for me if I try not to be. I have been there. I have done that. It only made me feel worse.

This doesn’t mean I am not proactive about it and it doesn’t mean I don’t want to change it or at least try to curb it.

For the most part I am okay with being the introvert (until you get to know me) and the quiet one. I am okay with being known as an anxious and paranoid mom. I am okay with being known as the one wtih Chronic pain (but we all know she is faking it) Mom. I am okay in being completely obsessed with Dr. Who and other Sci Fi shows, or authors.I am okay with being a complete bitch to someone in order to protect my child. I am okay with having strong opinions about things. It took me a long time to get here. It wasn’t always okay. Its easy to say it doesn’t matter what others think, its another thing to actually do that. I am not completely to that level. I still find myself wondering what others think. Its still a process of reminding myself It doesn’t matter what they think. It only matters that I am okay with it. It only matters that if I am not completely okay with it that I am gentle with myself while I am trying to change that.

We have been told for too long its not okay to look too closely at ourselves. Its not okay to change. We have told ourselves for too long we shouldn’t make others uncomfortable or offend them. We should conform to the majority. This is what was drilled into my head. Spoon fed from my first school experience. Yet at the same time we are told to stand up for what we believe in. No one ever saw these as contradictory.

Along the way I have found its hard to not judge others. Its hard to stand out from the crowd. Its hard to say this is who I am and I am okay with it. Its hard to stand up for ourselves and say yes my pain is REAL! Its okay to stand up for our children to be loud and obnoxious until they get what they need. Even if that is just a class sit down to discuss how we don’t need to worry about being fat or who is fat that we are all just who we are. After all who are they going to learn the most from?

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I remember judging people who went to psychologist or who were in therapy. They must be really crazy. Until I had to go. Until I knew if I didn’t get help that I would  mess up my kid. Do you know what made that process easier? Other people saying that they saw a therapist. That they had the same struggles. Its really helped me be more open minded about other things that I might not have alot of experience in. Say in taking pain killers daily….

I am not saying I am perfect with who I am…I am just saying I am okay with who I am. I know there are areas I want to change. I know there are things that don’t need to be changed.  Perfect tends to be an illusion anyway. We don’t need perfect. We do need okay. Being in chronic pain and being a parent has changed who I am. Who I am down at my core. In ways that I would have said couldn’t be changed. Once I acknowledged that and tried to leave behind my picture of who I should be and just be who I am it all got a little easier. Getting to that point though was one of hardship and tears and anger too.

Not every friendship is going to be so revealing, or so helpful as this one is to me. I truly think this friend was put to cross my place at that right moment. I would not have been ready for it at any other time. There were years that I had to do this for myself that I had to stop and think about each friendship. Years I did it in therapy with someone who didn’t know these people. Who was labeling their behaviors.I liked them for who they were and that was okay too.I just didn’t always look at what I took away from those friendships and I really should have been.  Now that I do know to do this, its like why did I never do it before. It was probably why my friendships before therapy were so off and on or so short lived. I still fall back on friendships that are more emotionally draining than they are helpful. Its who I am. I know that I will always have a few of these kinds of friendships in my life.

 

You have to be okay with you before you are okay with others. Check in with yourself every now and then…Am I okay with me?

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Yup I am!

If you don’t know……Google.

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I have a major pet peeve. Well I actually have many pet peeves but this one is right up there in like the top ten at least.

If you don’t know, about a condition or a medication even. Google it before you open your mouth and be ignorant. I am really tired of hearing that Fibromyalgia is a waste basket diagnosis, or that its all in my head. So many comments that are just really ignorant that irritate me. I know I shouldn’t let it bother me. I know I have spoken out about something before and found out later that what I said isn’t true. I have learned from those mistakes. People it really is okay to say I don’t know. It really is okay to say I need to look into that more.

In this day and age its not even like you have to wait til you get home. Most phones are able to do a Google search, although true sometimes its a luxury you can’t afford. I can’t tell you how many times a day I turn to Google. I looked at my history, I have looked up 1. the dark line down the belly during pregnancy, 2. the difference between warm mist and cold mist humidifiers, 3. What do Ladybugs like to eat? 4.What is Klaus from Vampire Diaries real name? 5. Kid and pet friendly flea killing methods

I am not saying don’t ask questions. Sometimes it is easier to just ask.  There is a time and place for everything. If I am on the computer already I tend to just Google my question. If I am taking a quick break on my phone , I might just ask. It really depends on whats being discussed.

When it comes to chronic illness’s though……please before you say something that you are not sure of, look it up.

I get the whole I don’t want to look stupid thing. I really and truly believe that the only stupid question is the one you didn’t ask. Its not stupid to admit we don’t know everything. The whole reason for an accumulated information source….i.e. the internet…is so we don’t have to KNOW it all.  Brain fog that alot of chronic illness people experience already makes that whole know it all stuff pretty difficult.

I understand that people can get frustrated with a search for information on Google or any other search drive. I know its something you have to play around with. My answer to this response is typically. Just type your question in.  It at least gets a search started and you can narrow it down. It may take longer this way but you will find the information… unless you are looking for the meaning of life. Or which came first the chicken or the egg. Somethings topics even Google can’t answer. However it would be interesting and fun and probably pretty informative to look anyway. Lets not forget that Google is not your only option for a search engine either. I know some people who prefer other search engines. Hey what ever gets the job done for you.

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Then there is the whole how do I know this is a valid site for information. I have totally found incorrect information this way.It doesn’t stop me from doing searches though. Typically the best way to tell is to go to the site of a well known organization. When my daughter and I did her space research project we primarily used NASA for information. Basically I try to use common sense here and see if they have a reference area. If I am looking for information about a health concern, NASA is probably not going to be a good source. Unless its about the effects of being in space on your health. They probably do know about that.  Not only that but some sites are easier to understand than others. A medical professional is probably going to understand some sites better than I would.  The English language is a wonderful language, sometimes, sometimes its very confusing. I have read things on one site and still was completely lost. What? um ….what? Go back and pick a different site. I understand that can be frustrating. Sometimes its not that important. Sometimes it is.

I don’t claim to be an expert by any means on really any subject. However most of the time when I talk about something I have at least looked it up. Even if it isn’t a condition I have. Even if its not something I have direct experience with. For me that is the other great thing about Google searches now, they save your searches and I can go back and click on it and say oh yes. This is the site I found that information on. Or let me send you the link for the site where I did find that on.

I guess this pet peeve is really very multi-tiered. Not everyone is always going to look up information, I understand that. This  is however how  misinformation is spread. Misinformation really irritates me too. I understand not everyone has the unbridled curiosity that I do. I don’t look up every thing that I talk about with other people. Somethings just don’t interest me. Sometimes I do a quick search and just read the little blurp without actually choosing a site to look at. Just enough to satisfy my curiosity.

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However when people do this about chronic illnesses , symptoms, side effects, its really quite detrimental. Perhaps you do think Fibromyalgia is a waste basket diagnosis, and you tell someone this. So they either keep searching or stop searching.Both ways can really be harmful.  Its been proven that this kind of misinformation is harmful when it comes to vaccines, medications, antibiotics. I mean there really is no end to this. Even after the correct information is spread there is still people quoting the original wrong information. We do get vaccines for somethings. The things that I have researched myself and feel comfortable in my decision to either get it or not get it. I think we really do have to step back every once in a while and look at what we are asking to take or asking not to take. Both ways really. We make it twice as hard on the medical profession when we don’t ask questions or ask for documentation. Its hard to overcome some of the older thought processes. Doctors really don’t know everything. Hey they are human after all. I have had a doctor basically come off saying how dare you question my decision. I also didn’t go back to that doctor. I love when I am on the same page as my doctor is. I have actually asked for  more information and been given print outs from the same site I had used.  We both looked at Mayo Clinic. It lead to further discussion and together we chose a different path.  Does this always work this way? NO.  I have gone with what the doctor recommended we do and it worked great! I then was even more interested and can you guess what I did next?  That’s right…..I Googled it. Did I wait til it worked? Probably not. I probably raced home to do a search to prove this doctor WRONG. Then found studies and documentation.

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When I do come across misinformation I don’t think I am really unreasonable about it. I don’t want to start an argument. I just want to help put correct information out there. I am not trying to be mean or hurtful. Its so easy to just let people go on sending out misinformation. I know for me, I appreciate when its pointed out. I am not really talking about treatment options here. That’s a whole nother can of worms.

Chronic illness sufferers have enough to deal with, having spout incorrect information is really the last thing we need.

What are some of your pet peeves along the same lines as this?

 

 

What you can’t see………

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What you can’t see is how heavy this fatigue is.

What you can’t see is my muscles feeling ache.

What you can’t see is my joints feeling like a vice grip on them.

What you can’t see is the tingly feeling from the nerve pain.

What you can’t see is I am gritting my teeth and probably making my TMJ worse to get through this activity.

What you can’t see is how hurt I am by being called lazy or a fraud or that I am just trying to work the system.

There is alot that you can’t see behind my smile. Oh sure I have one or two close friends that know. The doctors who need to see it, can’t, or choose not to.

What you don’t see is the pain from the full force run into Mommy hug. What you do see is a smile and a mothers hug and kiss.

What you don’t see in the parent who pulled their hair up put on jeans and tshirt had to sit for twenty minutes just to recover from that activity.

What you don’t see is that after attending the school event this parent had no choice but stick a movie on and lay on the couch trying to recover. But would not have missed it for anything.

What you don’t see is the guilt of putting a movie on because that parent had to put that movie on.

What you don’t see is that in order to pull off a full day event its at least a day of rest before and plan to be in immense pain and have what we call a flare for at least a few days afterwards. For our kids its all worth it. We know our limits and we go over them for our kids knowing it will cause more pain.

Chronic Fatigue Syndrome is a disorder that causes extreme fatigue. Its not just tired. Its fatigue so bad that it often takes 24 hours or more to recover from a simple ten minute activity.

Fibromyalgia is a syndrome as opposed to a disease. However that does not make it less complex. It is classified as a chronic pain condition. Symptoms vary from muscle soreness, abnormal pain response, fatigue and sleep disturbances.

Lupus is an autoimmune disorder that makes the immune system super active and it then ends up attacking its own organs. It often has inflamation joint damage, and swelling.

There are many other disorders, syndromes and diseases that you can’t see what they are doing.

You can’t see muscles hurt. You can’t feel the tight pain from inflamation.

These are invisible illnesses on the outside. So we are often told its all in our head. Its no wonder with being told that , that scientist and doctors are starting to add psychological changes to the symptoms.

Most of our society says if you can’t see anything wrong then nothing is wrong.

However living with even one of these we know we are broken inside. Often people have two or more of theses illnesses.

What you can’t see when you call me lazy for not getting up to do something is the bone pain in my shins. That as long as I am sitting with my legs propped I am good. I stand up and it starts hurting.

What you can’t see is why I just spent all day in bed not sleeping but resting and am now sleeping. You can’t see the fatigue that had hit me so hard I couldn’t even hold a book without my muscles trembling.

What you can’t see first thing in the morning is how hard it is for me to get out of bed. Having a bottle of water and my morning pills beside my bed is not being lazy. I need to take them at least thirty minutes before getting out of bed so I can move.

Next time you see someone you think is being lazy or is short tempered or is always finding somewhere to sit. Perhaps sit and talk with them. Find out what is going on. Most of us wont tell you about this. But just your interest means alot. Asking what you can do to help is such a soothing balm to people who deal with chronic pain and illness. Sometimes just knowing that a friend didn’t know much about one of my issues but took the time to research it a bit is so soothing.

We don’t want pity we want understanding. We don’t want someone to take over for us. We want help. We don’t want to be told we are always complaining. Perhaps the complaining is a type of motivation for us. Verbalizing what is going on lets us push back. We don’t want to be your charity case. We just want you to sometimes think about what we have gone through to get to an event.

When we say its an invisible illness there is a reason for it. Its not like a broken bone or some such thing that you can instantly see and know it must hurt. It doesn’t mean we have no empathy for others with issues. In all actuality we probably understand more and in a way that others wouldn’t .

Many of us were and still to some extent type A people we are doers. We are movers. We are high energy people. Having  a body holding us back just makes it more of a frustration.

If you want to help us. Don’t ask what can I do? We will most likely say nothing..We are not comfortable. Instead perhaps ask can I bring you guys some dinner so you don’t have to cook when you get home. Can I come by and take the kid/s to a park so you can rest after this?  These are the types of offers I typically respond best too.

What you can’t always see is how strong we are.

What you can’t always see is how determined we are to thrive. Maybe not every day but most days.

What you can’t always see is the courage we greet each day with knowing what is in store for us.

Angry about being angry

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I thought I had moved passed this.

I thought I was done with being angry.

I thought I had left anger behind.

That was the problem. That was why it caught me so off guard. I had stopped letting it go daily.

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Chronic illness and pain truly is a cycle. We forget that sometimes. We are constantly grieving in some form or another.

The more I reflected on it , I realized that it was more aimed at me not having more children. This is hard for me. I don’t really want another child. However I wanted that decision to be mine and not my illness. I didn’t want to have a doctor tell me it would not be a good idea to get pregnant again. I would love to see my daughter holding a little brother or sister. However my energy is spent long before the end of the day just with her. A second child would not be fair to either of them.

I was angry that yet again my chronic illness and pain was dictating more things to me.

This really caught me off guard because I had thought I was okay with not getting pregnant again. I did not realize there were little niblets left that I still maybe wanted more.

When I stopped and thought about it , of course there were nibblets left. Almost eight years has flown by and every day she gets a little older. In alot of ways the earlier years are so much easier. They can’t ask a million questions in five minutes when they can’t talk yet. I miss that silky soft feel her skin had. I miss breastfeeding. I miss all the wonderful parts and even some of the not so wonderful parts.

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Anger and chronic pain really do go hand in hand. Alot of time I use any anger I have about  my circumstances to get me through the day. There are some creative and useful outlets for that anger.And I am not talking about throwing the frying pan at people. I write, I take the dogs for a walk which is healthy for both of us and sometimes I let it fuel my cleaning sprees.

Anger for me is a seductive partner. It gets along well with my sarcasm and I tend to be angry before I realize I am angry. Does that make sense? Its like I will say something and someone is like wow why are you so angry? What? I am not angry! Oh wait maybe I am. I am also good at denying that I am angry until I am ready to deal with it. On some level I enjoy being angry and grumpy.

When I realized I was back at being angry with my chronic illness and pain, I was frustrated. Here I am again. I haven’t made any progress I tell myself. But the truth is I have made progress, I am not at the same place. When I was first diagnosed I was not interested at all with having another kid. I was so overwhelmed with working and being a mom and keeping everything going that it didn’t occur to me. What we don’t realize is that its a process we go through over and over again. Even knowing that it still frustrates me when it happens.

Its okay to go through the process at each thing that comes up. What bothered me when I was first diagnosed is not what bothers me now. I just have to keep reminding myself its a process that we keep going through. It doesn’t mean we haven’t made any progress. We are just at a different spot of the cycle. This is where keeping a pain diary can be helpful.  A tool to look back and see where you are with where you are now.

For me just acknowledging that I am going through the process again is enough for me to leave some of it behind already. Just like a weight falling off my shoulders.

I know one thing that has happened for the better, is I am better at self analysis. I don’t shy away from it as much anymore. Now its more of a necessity than it was. Writing gives me a chance to explore how I am feeling. I can write it out and get it out and sometimes I can move on.

So once I realized what I was angry about and looked at it realistically, I decided to write about it. Will this mean I won’t be angry about it anymore? No. However I have given myself permission to be angry about it, to mourn it again. To make progress.  To acknowledge that sometimes when you are making progress that progress requires you take a step or two back everyonce in a while. It means you are gentle with yourself and tell yourself its okay to not be okay all the time.

 

Guilt is not welcome here.

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If  there is one thing that anxiety has brought that I would instantly return its the guilt.

I constantly worry about things and then end up feeling guilty about not making a decision quicker.

Then there are the times that I make a decision I am good with the decision and then my anxiety flares and its, well what if it went this way instead?

Did I just deprive her of some experience she will need later in life?

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Then there are the times that I just can’t physically do something that I want to with her.  Times that I have pushed myself and just have nothing left. Not even snuggling. It is so hard to beat that guilt back. I am doing the best I can , I know this.

When I did work I felt guilty if I didn’t spend every minute I did have with her.  Then I was really too tired to enjoy my time with her. I learned to balance it all for a bit. As each illness was added I had to learn to balance again and again.

This isn’t really something new for me. Its always been there. I even remember my mother in a sigh of frustration telling me that we don’t live in a what if world. It has come back to haunt me as my daughter does this to me now.

When you add motherhood and pain to someone who already thinks of every possible outcome. All the time.

Through some years of therapy, medications to help the anxiety most of the time I can be very discerning in my decisions.  Sometimes though it creeps back in. Its sneaky like that.

When it does I have to stop and think, is this something I can change in the future? Yes? Great. I will avoid this in the future by making a different decision the next time.  Its not always that cut and dry. I often have to remind myself over and over that I will change it next time. I will remember next time.  Sometimes this is where the guilt does come in handy as it etches it in my mind so that next time I do remember. In this way guilt can be good!

If its not something I can change, did I follow my gut? That little inside voice? Yes then I did the right thing and I just need to keep telling myself this. Sometimes over and over and over. I have not listened to that gut instinct before and it was the wrong thing to do. Many times in the first year of parenting I went with what others said and ignored that gut feeling. It always turned out that gut feeling was right. I can’t say I always do this right away….but I try.

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I also think about  this …Is this something I am comfortable with? Is this being true to who I am deep down? If I am not following what I believe is right for me and my family then guilt is sneaking in because of that. Does it follow with my values and my beliefs?  Does it mean I stop trying different things? NO!  I am constantly on the hunt for new ideas, different ways to try things. Because not only does it have to follow with what works for me, it also has to work for this small person that is my daughter.

I think the hardest thing to get past is when I have expressly said I would not do something and I do it. My education is in Early Childhood Education so I felt I knew what I was talking about. Its funny because a really small thing actually makes that guilt go away. It just melts off me. When I say to someone I thought I would never do this….boy was I wrong in that. It actually works better than I thought. Its such a relief to say it. To chuckle at the irony in it.

The last thing I ever thought would cause mommy guilt to rear its head is from comments from other mothers.  This is probably the sneakiest way it sneaks in for me. I am good at saying oh thats not for me , or I have tried that  it was a no go. Then sometimes even days later it sneaks up. That another mother has looked at me and found me wanting.  Should this bother me…no. Does it? Yeah sometimes it does.

This is where I have to remind myself they are not walking in my shoes. They are not me. Their kid is not my kid. What works for them won’t always work for another. Really would we want everyone to parent the same exact way? I for one do not, it would make for a very boring world and diversity would soon be filtered out.

There are times that I feel guilty that my illnesses and pain issues leak over to my daughter. In some ways I think this has also been a blessing because my natural instinct is to place her in a bubble and protect her always. What I forget though is sometimes what she has to do is actually making her stronger. It is making her more self sufficient  It is making her independent. Which in the long run is really the best thing for her. Even though it goes against my mothering instincts.

Guilt may have its place in motherhood sometimes….but its not something I welcome or want. I don’t think any of us really do.

Have I gotten rid of all my guilt? No…Don’t be silly. What I have started doing though is if there is something I am feeling particularly guilty about,Say reading aloud(because I really hate that!) I make sure to make time for it that day. Its not perfect but it makes me feel a little better.

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Parenting is hard to begin with , chronic pain brings another layer to it. Remember what they typically say, if you are worried about it, you probably are doing everything right. Its the ones that don’t worry that don’t have that niggling little doubt that they may be doing something wrong that we should be worried about.  Do I think I am a perfect parent? NO. Do I worry I am doing something wrong all the time? Well maybe not all the time but at the very very least once a week.