Tag Archives: Disability

Honestly checking in with myself

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So recently I have been thinking……about a lot of things. This is kind of a hodgepodge of that thinking.

I need to get actual employment. Of some sort. Somehow I would manage this. Even though I know physically, mentally I am not up to even part time working, being a mother , a wife and still being me. Is this really a need or a want? Hmm. hard to tell.

I really started to think about this. I starting thinking what works in my life right now.  When I realized….everything. Sure there are issues. Sure there are bumpy areas. However, It works. For the most part I am content. I am enjoying being able to help my friends and also lavish attention and love and care on Snickerdoodle and Princess P. That as much as I may complain about the kid. She is a good kid. I enjoy being able to be fully involved in school and home life.  Don’t ask me about that in the middle of the summer though, or two weeks before school starts. I do however realize now how much I do love the fifteen minutes waiting in carline…Listening to NPR or spent reading.  Even though the time may have flown by to pick her up. The energy she brings into the car is amazing. She truly is my sunshine.

I feel my marriage is pretty strong and that we are pretty good in that area. Even though yes….I complain sometimes there too.  He is a good guy.  One of the few good catches.. Sorry girls…he is mine..He is very much taken.   He is taking care of us, he is the rock of our family.  I still am not quite sure how he has put up with me for almost fifteen years now. IT boggles my mind. All that aside we are a good team. We made a beautiful daughter. We may not always see eye to eye but we make it work.

Then I look at what I am not doing, I am not falling into an exhausted pile of goo at seven pm. Not even able to put my daughter to bed. I can’t say there aren’t days. there are. Its just not happening every single night.  I am not using medications to get me through the day. I do still take medication just not nearly the amount I used to. Going off some of those medications made me realize how much they were actually allowing me to function. I don’t want to function only by medication alone. I didn’t have time for friends, or a social life if I wanted one outside the scope of work and the kid’s school. I didn’t have time to help friends and I was constantly torn by working or helping my family when they need it.

I have never been good at waiting and I always wanted to jump ahead. I didn’t want to start at the bottom and work my way up. I wanted what I wanted right this minute. I felt like I had to be the important person to feel accomplished and worthwhile. Now that is not so important. I feel fulfilled in what I am doing now. I finally feel like I am doing what is right for me. The thing that surprises me the most is the people who have supported me in the past two years and kept reminding me that self contentment was important too.

We don’t have a lot of money. Getting a job would help that. My question keeps coming back to is it worth it. Is it worth it to get a job, any job, and loose what I have now. What i have worked for two years to get to. Two years with minimal therapy I might add.  So we don’t have a lot of money. We have enough most of the time. We have other things that money can’t buy.

Writing is helping in many ways. Not just me, others have emailed me. Its been incredible the people that it has touched. I don’t think I am the best writer. There are other blogs that I follow that I think say things so much more eloquently than I. I am grateful that some of them actually talk with me, guide me and  help me. A few of them have even reminded me that it doesn’t matter about the quality of the writing skills if it helps someone else..That’s what matters. Grateful.

Some people run from self analysis……I apparently adore it. I can’t stop doing it.Sometimes I drive myself nuts with it, I drive my friends nuts with it. The good ones know its just how I am. The one thing that therapy taught me was I have to be honest with myself. I have to put myself on trial so to speak. Swear to tell the truth the whole truth and nothing but the truth. So maybe I don’t over analyze myself too much. Maybe because there are things I want to change that all this self-analysis is keeping me honest with myself. I went through years of therapy without doing this. I didn’t change any of the things I wanted to change.  I made progress but it was painfully slow. I was constantly frustrated that things were not changing, remember that whole lack of patience thing.  Strangely enough it wasn’t til after I stopped therapy, my therapist retired, that the changing started to happen. No longer was I pouring my frustrations out to someone else. Now I was alone with my thoughts. That was kinda scary at first.  I am good at being in denial…..but not the denial that can’t see whats wrong…..the kind that sees the problem and whispers not now and tip toes around it. Then one day I am ready and it goes down. Sometimes its because the issue had a deadline. Sometimes its just because I have talked myself in circles enough that I just want to deal with it and get it gone.

The more I have thought about this, that I constantly look at what I am doing what I am feeling, you know what it does make me? Grateful.  Grateful that I have the friends that I do, the family that I have, the life that I have.  Incredibly grateful.

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What no one tells you

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What no one tells you is that who you are changes…..
What no one tells you is that you are continually finding yourself
What no one tells you is how hard you will work to not be labeled disabled…..only to turn around and have to file for disability
What no one tells you is just when you admit to yourself you are disabled someone tells you you aren’t
What no one tells you is what you think you can do and what you can actually do….don’t always meet up

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I constantly feel let down that someone didn’t tell me about theses things. The more I think about these things the more I realize why.
Because really these are personal lessons we all have to go through individually.  These are things  we have to work out ourselves.

Someone can tell us about them but it won’t sink in. They aren’t lessons you can avoid.  As much as we wish we could.

I don’t think people realize that people in chronic pain go through a cycle similar to the grieving cycle. The only thing is we don’t necessarily all go through the same cycle or in the same order even.

Where as in the grief cycle the very fact that you are still going through the phases typically indicates that you are not ready to move on, I don’t necessarily see this as true when dealing with chronic illness. There are so many different aspects to chronic illness. Sometimes I will quickly cycle when something else that I can’t do pops up.  There is a level of acceptance that people with chronic illnesses can get to.  I think with chronic illnesses we have different levels of acceptance.

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I accept I have Fibromyalgia…….I don’t accept it will limit me.

I accept I have Chronic Fatigue……I don’t accept I won’t ever get enough sleep.

I accept I have Arthritis……I don’t accept it will stop me from hugging my daughter.

I accept I have OCD/ADD….I don’t accept I can’t use that to good use.

Anger isn’t around much anymore. It was around alot at the beginning… that quiet bubbling anger that you don’t even realize is anger.That why don’t they care anger. That they don’t understand what I deal with anger. It was a deep dark sneaky anger. It didn’t want to leave so I wasn’t allowed to realize it was anger. Once I did. It was like this big sigh of relief. Okay. This is the way it is. Not everyone is going to understand or be helpful. Once I realized it was anger it was conquered. Okay maybe not conquered but I did have more control over it.

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I don’t think I have ever gotten to bargaining. There wasn’t really anything to bargain with. How do you bargain when what you have is already threatening your way of life? I wouldn’t trade anything in my life in order to not be sick. I liked everything about my life even if I wasn’t aware of it at the time.  I guess for some this is where they might bargain with God or a higher power.  I think I asked that Higher power why a few thousand times. I don’t remember ever bargaining with that higher power. Mainly because when I really look at it, I do believe everything happens for a reason.

I definitely hit depression for quite awhile. It was again something that started so slowly and was so sneaky that it took me awhile to realize it. That it was even sneaking through my antidepressant. I guess it lured me into thinking I was protected. Then it was kinda like how? How did this happen? I didn’t question why I was depressed. It didn’t surprise me at all.

Acceptance. I think like I said that comes in at different levels. Its a work in progress. Sometimes its a daily task, sometimes hourly, even sometimes minute by minute. It just depends on what kind of day I am having.

Dr. Kubler Ross is who came up with the stages of grief. When I looked into more of her as a person, I understand the stages a bit more. They aren’t set up to be neat little categories that people will just go through automatically and be done. That sometimes people will go through two stages at the same time. Or that they will cycle through all of them in a day, in an hour.

They came out not too long ago with a more loose stages of grief.  They understand that not all of us are the same and that we will go through it in our own way and our own pace.

That couldn’t be more true of chronic illness cycling. Give the same exact illness with the same exact symptoms and severity to two people and they will go through these stages in their own way and completely different.

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Sometimes I feel that what people don’t tell you is the elephant in the room now a days. No one wants to talk about it. No one wants to admit that they think that too. Unless they are with others who have similar issues.  When there is no judgement of how you deal with things, there is large amounts of growth. I know this personally. It is my wish that eventually with bringing attention to chronic pain and chronic illness’s that can’t be seen that one day this will be so. Non-judgment and acceptance for everyone no matter what there journey is about.