Category Archives: Marriage

Connecting with Compassion to who I am #1000speak

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Everybody dreams what their life will be like when they are older. Especially when you are a teenager and life is so hard and no one even remotely understands you. Life will be so much better when you are an adult and in charge.I would get married. We would have at least two kids but probably more and of course we would have a boy first and then a girl. We would have this nice house which I would always be able to keep clean. We would have success after success at our careers. We would have money for vacations and would be well-traveled. This picture of how it will be drives you on and on and on. Until it doesn’t. Until that is not how your life is going at all, not even remotely. Your daydreams didn’t account for reality. They didn’t account for infertility, job loss, deaths of loved ones, and on and on the list could go. That’s the problem I struggled with for a while, the picture of my life in my head and how it really has gone.

Many days and nights spent berating myself for messing it up so badly. I obviously wasn’t trying hard enough, doing enough, being enough. I had to get my act together. It was past time to grow up and be the adult I dreamed I would be. In time, I added to that. It was time to be the wife I dreamed I would be. It was time to be the mother I dreamed I would be. It was time I had the career I wanted. I was so good at criticizing myself. Really , I still am.

Every month for a week at a time I would beat myself up. It was so easy to get pregnant we had been told. It only takes one time. Every month I struggled with the feelings of not being enough. Not being woman enough to do a simple thing like get pregnant. Made worse only by doctors who said “ah your young it will happen. There is nothing wrong.” Nothing wrong at all with a nineteen year old, a twenty year old, a twenty-one year old trying month after month to get pregnant and failing. Month after month of seeing my dreams flushed down the toilet, literally. Finally when a doctor did believe, I wasn’t relieved. I didn’t feel vindicated. I felt broken. The day came and the test was positive, for a short while everything was back in place. Then it was gone. I was back to flushing my dreams down the toilet. That picture in my head said I should be pregnant with baby number two by now. That picture in my head was starting to shake and tremble. If I was really honest that picture had broken years ago but I refused to see it.

The test was positive. I took a million more. I didn’t really believe it. I was sure something was going to happen. Even as I was in labor, something would happen. My dreams can’t be coming true. I will mess this up some how. We were leaving the hospital with a baby. WITH. A. BABY. For a few days I believed and then, you have eighteen years to mess this up every day. For eighteen months I worried about every single detail. No, I didn’t worry, I obsessed. I question every decision at least ten times. My house could never be clean enough, I could never be doing enough for this precious life. Obviously the only answer was to try for another baby. You know so I could mess it up twice. I mean so I could get at least one right. Maybe. Two months and nothing. So much for the second time being so much easier. Then the phone call. My husband lost his job. Laid off. Back to the doctor I went, for birth control.

At this point you maybe wondering if I had the same issues around getting married. The simple answer is no. The process was not simple at all. Three weeks after we met my husband was in a car accident. He had been taken by Helicopter out to a trauma hospital. Scary words were said, like life support, coma, brain injury. To see someone like that is not easy. To see someone like that and suddenly know they can’t die your suppose to marry this person.The only second guessing I have is , if he hadn’t been in that accident would I have ever known? Would I have messed that up and walked away. For a long time that answer was probably. Probably I would have walked away from the greatest thing in my life. I am sure I would have messed it up.

One day it was clear. I needed help. Therapy started quickly, before I changed my mind. Medication happened. Medication changes and more therapy. It took me years to be comfortable with self-analysis. This was just simply not done. You simply didn’t do self- analysis with someone else. This is what you did in bed late at night when no one was around. Most certainly you never told anyone, let alone discussed it. Slowly progress was made. Until it all fell apart. It like literally fell apart, got laid off then my car blew up and then I wrecked my “new” car. I tried to pick it back up and worked at a new job for three months and then I realized. No my family is more important to me then this. This work and have nothing left, using medications that allowed me to work but ultimately would shorten my life considerably. My family deserved more than this.

It really wasn’t though, it just seemed like it. Instead it was all falling into place. All that therapy was not for nothing. I have been slowly coming to accept where I am. The first thing I had to do was tear up and burn that picture in my head of how life was supposed to be. Chronic illness had dictated long ago just how clean I could get and keep my house. It dictated a lot of things for a while. Second thing was to tell this chronic illness crap it wasn’t the boss of me, well not all the time. I started writing as a form of self-analysis and as something that maybe eventually one day it would help someone else. Even if it only helped me it was worth it.

Four years later, trying to look back to what really ultimately helped me make the change. The change that took me from a person who had to please everyone else even if it didn’t please her to the one who likes to please others but knows she has to please herself as well. I can’t tell you how much watching tv show after tv show actually helped because I stayed true to what truly interested me. How many Doctor Who episodes I watched at just the right time. The universe was getting its message to me.

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I can’t tell you how much these words stuck with me long after the episode was over. I can’t tell you how much I really just sat and thought about how I feel about these words. There were quite a few others I am sure that I heard but didn’t really hear. I know now that it wasn’t the right time for me to hear them. Somewhere along the way I found myself back to being an avid reader. Somehow I was finding myself. Four years of this, so don’t think it was just one day. I can’t tell you where I was in the journey when I saw this next quote. I just know it stuck with me.

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Huh, yeah. THAT. For a while I just related to this post. I would see it and it would always get a “like”. Then maybe I shared it. The more it sat in my brain just percolating the more I thought about it. Then came the final point, the epiphany if you will. What if I just let go of that picture? What if instead of burning it or ripping it in anger of how it was “suppose” to be. I just let it go. Slowly, I began to actually enjoy my life. I began to start analyzing what I do have about a year ago.

I can’t tell you that voice that always says I am not enough, not doing enough is gone. It is not. It is not always easily squelched under foot either. This is where Buddhism has really come into play for me. Reading some of the Buddhist texts and books available through the Unitarian Universalist Library in our Church I found this quote.  This quote quite often becomes my mantra during meditation.

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I can’t tell you how many times that voice tries to rise and I can only answer Self compassion repeated over and over. I am not quite there yet. I am not quite to who I am yet. I am getting closer and stronger in it every day though.I am trying every day to connect with who I am instead of who I thought I would be.  I hope you are too. I hope you are showing yourself compassion because that voice is wrong. It is dead wrong. You are enough.

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Please do CONNECT with Compassion and Link up to 1000 Voices of Compassion Speak

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The summer climax….family vacation

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Family Vacation-It is grueling in a lot of ways. It is also worth it in a lot of ways too.

We booked our vacation in February. After receiving our income tax return. Thank you Government! It is the only way we can budget in a vacation. I was really really surprised how reasonable a Disney vacation package is.

I was determined to maintain reading time even with being on vacation. The car drive was a good place to enforce this. It was more like me saying every ten minutes. READ.. Are you reading? READ!  She had her book out the whole way there, a two hour car trip.

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We got to Fort Wilderness campsites. The check in time was suppose to be one pm or later. We got in ten minutes early. BONUS! We got campsite 2006. It would have been super awesome if it was 2005 since that was the year she was born , we were here to celebrate her birthday after all. I was super stiff from the car drive so I did some stretching while the husband went all Master Tent Setter-uper. It took about twenty minutes before the kid was ready for the pool.  We went ahead to the pool. Hubby was super about setting up the tent and inflating the air mattresses.

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Let the standing in line begin! An hour and half and we are done-for now.  A small trip to Wal-Mart. No vacation is complete without a trip to Wal-Mart.  We saw the good side of Orlando. We saw the bad side of Orlando. Thank you G.P.S. for taking us on the longest route possible.

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Each night Fort Wilderness has campfire events, Chip and Dale were there. The first night it was charades. It is amazing how much they can express without saying a word.

As a native Floridian you would think Epcot would be old news. It actually has changed a bit. It was a nice mix of familiar and new stuff.

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Of course, there is also the difference of seeing it through your child’s eyes.  Remembering how you felt and seeing it expressed on their face.  It really is priceless.  That’s what you hold on to when the kid is in mid temper tantrum. Actually she was really really well behaved.

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Some of the things have changed. Figment is not the same.  It takes a bit to remember that change happens. The message is still just as fantastic.

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Kids absorb so much more than we realize.  There were some really inspiring quotes around too. Which was great  because what else are you going to do in line? Think deep thoughts of course!

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NOT! It’s more like how long until alcohol!

There were primarily two types of parents at Epcot. Those who had alcohol and those who wished they had alcohol.

We did not indulge this trip. It was really tempting in Mexico to stop for some Tequila!

No really after ten hours at Epcot I can see how kids would have temper tantrums. I can see how parents could have temper tantrums. I am  physically only able to handle one day, even that was hard. I can’t even imagine going to parks back to back.

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Sunday we chilled. We went to the pool. We went to the arcade.  There were a few temper tantrums. It really should be expected. If you are tired, your kid is tired too.  It also helps to remember to eat frequently.  That is primarily where we ran into trouble. You really do loose complete track of time and not realize its been so long.

There was Mommy and daughter time. Even if she did say…..” look Mommy I am floating like you only better!”

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There was Daddy and daughter time.

There was bike riding, not by me though. My back won’t tolerate that. They rode their bikes, I walked to the bus stop and took the bus!

I also took advantage of the hot tub at every available chance.

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The campfire events were the perfect end to the day. Okay the S’mores might have been part of the reason for that. They had a movie as well but, realistically we were beat by seven pm. We headed back to camp by eight thirty each night. It was hot. I am not gonna lie. It was not miserable hot though. We had electricity hook up so we had a fan, which really did help.

It really was exactly what needed as a family.

Monday we packed up and drove home.

Tired, slightly burnt(despite copious amounts of sunblock) and ready for home.

I did not do much of anything once we got home.

Other than start planing next years vacation to Animal Kingdom!

So what did I learn?

1. Medicate medicate medicate.

Set your alarm. You may even need multiple alarms to actually take the medications! Don’t wait to be in pain! It slowed me down to wait for pain to ease to keep up with the kid.  It was easier to put aside my discomfort to make sure she had a great vacation by telling myself its temporary and rest is coming. Make up a mantra to help keep you motivated.

2. Pace yourself and go with the flow.

Some of our past vacations I have been completely stressed out.  It is better to have an idea of how the day will go but not be very rigid.

3. Speak up for yourself.

I mostly use over the counter medications. However I did discuss this trip with my Doctor. He was willing to prescribe muscle relaxers and pain control meds for the few days we would be gone.  I also was more tolerant of myself using some of my vices, Chocolate and Caffeine. I used Mountain Dew and a snickers bar to finish the trip home.  It was a small boost but it helped.

4. Plan ahead

So this may seem a lot like training for a marathon. YOU are training for a marathon! I did slightly more walking the days prior to going. I also tried to rest as much as possible as well.  It doesn’t always work but being mindful of needing to train and rest certainly helped.

5. Plan for REST!

I am really glad this year we added an extra day to hang around the campsite. It really helped me feel less taxed from our vacation.

I am still extremely tired and easily exhausted. I am still in higher amounts of pain. I expected it though. Plan for plenty of rest after the vacation as well.

When was the last time you….

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Stopped to smell the roses. Wait, no I am serious.

As parents we have a unique chance to always enjoy the little things. We just have to remember what it is like to be a child, when everything is new and wonderful.

Does it really take that much out of our day to

……Stop and smile as you watch a butterfly flit around.

…….splash in a puddle or two after the rain.

…….wore something just because it made you happy.

I find that when the pain is the worst or the most annoying that if I focus in on what my daughter is involved in, the pain isn’t as bad. It may mean that I have to get down on her level. Let’s worry about getting back up when it comes time.  Sometimes with chronic pain and parenthood we are so focused on doing that we forget to just ….be. That it’s okay to slow down. Sometimes just acknowledging that I am in a lot of pain and to slow down is enough to lessen it.

One of the joys in my life right now, is that I am an auntie and a family friend to enough other kids that I have my pick of age ranges. I can immerse myself in the infant stage or just chill with some eight year olds. If I am feeling really adventurous I even have a teenager or two I could annoy. I regularly get to enjoy my friends five year old as I help out by taking her to Tae Kwon Do. I am so immersed in the life of a parent of an eight year old that I forget what five was like.  Sometimes it is not that thrilling. I completely forgot how at five my daughter was slow as molasses on doing ….well….anything. I forget how determined to do it themselves they are at one.  I forget how exciting and perplexing a bird is to a nine month old.

Its amazing to me how much even just five minutes focusing on them can help sort us out. The pain is a bit more manageable, the stress is still there its just less. Does it always work? Nope. If I am really honest with myself though, its because I have not been slowing down enough. It is because I am trying to do everything all at once. There is so much guilt associated with being a parent who is in chronic pain that we tend to push our limits, all the time. It doesn’t help us. This is something I work at remembering every day.

When was the last time you……..

Sat in the grass and examined it for bugs?

pulled a part a flower to see what is inside?

stopped to blow on a dandelion?

took delight in watching the birds fly around?

As I think about the last five years dealing with chronic pain and parenthood. There were times that it was so easy to ignore everything around me and focus on the pain. It has been a slow  journey to find myself again. The things that stand out in my mind are when I was basically hyper focusing on my child/family instead of my issues. Unplanned moments that just stick out in my mind.  Will my daughter look back and see a parent in pain or a parent involved?

I hope and strive for a parent involved.

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.