You are Not Your Illness

This heading has been a lesson I’ve been trying to learn these past few weeks. With Chronic illness we have enough to deal with, but when other health issues creep up, it seems almost unbearable.

My brain has been so easily wired for the negative and I know why, with childhood trauma you have no choice but to go to the negative while you are on constant alert of the worse case scenario thinking, and I had to be somewhat in control to navigate that time in my life.

So choosing Happy or not making who I am all about my health issues does not in any way come easy, it’s like I have to undo years and years of how I was naturally.

Some advice I was given was to acknowledge what my body was telling me to thank it and adjust accordingly but not dwell. Otherswise it will and has on many days consumed my life and robs me of joy and being in the moment.

So this will be my goal to figure out those moments as they come and hopefully each day it will become easier to undo my normal way of thinking.

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Happy New Year

Doesn’t January 1st always feel like you have the opportunity to start things fresh and new? To make resolutions and set goals? This is not something I do anymore, I feel it only sets us up for failure and letting yourself down.

My goal for this year is to take things very much a day at a time, a step at a time.

The song by Witney Houston from the movie The Preachers Wife, the line that has stayed with me and has gotten me through many times where I had to just break things down as I keep pushing along. Part of the lyrics go like this…

Step By Step, Bit by Bit,
Stone By Stone , Brick by Brick
Step By Step, Day By Day, Mile by mile.

I love these lyrics it really talks about just taking it as it comes. With chronic illness that’s really all you can do. If I step back and look at the big picture too much it can make me sad and overwhelmed, so why do that to myself My 2020 will be about listening to my body, acknowledging what it’s trying to tell me, thank it for letting me know and adjust my behavior.

So here we go, hoping for everyone that it’s a good year filled with improved health and acceptance.

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Toxic Relationships and Health

Dealing with a toxic relationship creates chronic stress and anxiety that reduces your immune system, making you vulnerable to several other chronic physical illnesses, including heart disease, chronic respiratory disorders, and gastrointestinal conditions,”

Credit to:

I have no doubt that my immune system issues started with my childhood trauma, the evidence to back that up today is overwhelmingly conclusive.

What I did not realize for many years and I chose not to face was how that toxic environment with one of my parents has continued the cycle. I have always walked on eggshells in our conversations, always felt judged, not supported, let down and even shunned in being accepted, all the while tolerating it in the name of my belief to honor my mother and my father.

Last month due to a family situation I hit my breaking point and my ability to no longer tolerate the behavior, I did not deserve it and I was not going to take it anymore!

What I was not prepared for was the unexpected sense of calm that came over me as the days passed, a peacefulness that I could not explain and I was almost afraid of, why was this happening? It became very clear as time went by that my relationship with this parent was at a cost to my mental and physical health.

Even though the abuse ended over 30 years ago by one parent, the toxic format to this relationship never changed it continued as it had from childhood, it was my decision to push it aside, explain it away or do what I thought was the right thing in my faith.

This has been a massive shift in my thinking and my decision to do things differently now.

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Pacing…More than I ever thought it would be

So pacing is what I need to do. The doctors have said I’m functioning at about 30%! What does this even mean? I know daily my body has to tell me I’ve gone too far, but it seems I’ve done absolutely nothing. Being a type A personality I don’t think anything I do will be enough and according to research most people that end up like me are type A and have ignored the signs for years. And here we are.

So to put it simply, I have to rest for the exact amount of time that I do something, anything, all of it contributes to a use of energy. Reading, typing, watching, writing, bathing, walking, making food, cleaning up, getting dressed, having a conversation….OMG the list is long. How do you figure out and schedule what the day will look like, what you can manage to do.

The worst part is the guilt. They can see I’m laying down again, I didn’t get enough done, I don’t want to ask for any help, they are not my slaves, I’m better of than most people…..on and on and on. The more I read on it, pull out the sheets to start calculating and figuring out what my day will hold, my mind is already flooded and overwhelmed. I’m determined to get this figured out and be able to look at my day and see all the times and places that need to scheduled so I can do this.

There is no CURE!! If I continue to outpace my available energy it will be a losing battle that will ultimately put me into a crash that could take years to get out of. That’s really the bottom line, it’s no joke it will happen.

I want quality of life, energy to enjoy my days and the knowledge to know when it’s enough.

Push Crash Cycle

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Change is on the way

Officially as of November 22nd I am no longer an employee of the place I’ve been working at the past 11 years. I was told a year ago to stop working, I tried to see if there was a way I could make it work, my body made it very obvious that was not going to happen anymore.

It has been hard to walk away, to really wrap my mind and my heart around the fact that I don’t need to work anymore, I can just take care of myself. Mind you, they have not let go so easily and I’m not enjoying the training of the new girl. I waited too long, I just don’t have the patience or the care to be there to help them out.

So here is my question, at what point do I finally realize that “I do not owe them a kindness” (Alice in Wonderland reference ). I gave them 2 1/2 months notice, they dragged their heals finding someone and now I can’t do it anymore, the thought of being there in any capacity sets me off physically, emotionally and mentally.

I’m supposed to be in tomorrow, I just can not do it!! My body is tired, my pain and stiffness has increased over the past few weeks and not it’s all gone haywire.

So the answer is NO!! I cannot, I will not and they will have to figure it out.

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“Personal boundaries are guidelines, rules or limits that a person creates to identify reasonable, safe and permissible ways for other people to behave towards them and how they will respond when someone passes those limits”

I always like to look up the meanings of words, we go through life thinking we are sure of what a word means, but then you learn something new.

This past year has been a huge wake-up call for me, as in some of my other posts I have illnesses that limit my ability to do things and I’ve been very blessed to have a job for the past 11 years that has supported a flexible work schedule and also allowing me to work from home.

I was told in May of last year by my internist that I actually should not be working and his recommendation was that I stop. I conveyed this to my employer, and then asked if I could just work within the perimeters of my current Employment contract, because what has generally happened over the last 11 years is that I have predictably gone above and beyond my contract.
What I see now and in reference to the word boundaries, is that this has worked out better for them then it has for me.

These past nine weeks I have been dealing with a debilitating shoulder injury, and although the understandings and the I’m Sorry’s and sympathies were there the expectation was still to continue with what I needed to get done.

That all stops today, I realize now that I have to start placing some very clear and concrete boundaries around my work life and that is not going to sit well with many but it either goes that way or I no longer stay at the job. My past Behavior has only resulted in me not being able to pace and properly take care of myself and as always I let that happen and in the end it’s only me who suffers nobody else.

Somewhere along the line I lost my self-worth, and confidence in my very capable abilities, and if I can’t be at a place that appreciates me then it’s time to move on.

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Mind is the Builder

The power of my thoughts, where I can leap to in a single bound. My pathways were set long ago in my trauma, to always be on alert, be prepared, think through all the worst case scenarios that you can, then you’ll always be ready. How completely exhausting!My time of complete peace in my mind is when I meditate, block it all out, deep breathe and try to picture peace and slowly I can feel it over take my body. My face flushing subsides, my heart rate returns to normal.Mindfulness escapes me, I understand the concept and I try, but those pathways, my go to thinking still has power most days.I probably need to meditate more throughout the day, and do my best to fill my mind with good things. That is the goal, the plan the dream.

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I have been off the grid for over 5 weeks now.

I thought my normal health challeges were something to complain about until I got bursitis and frozen shoulder at the same time.

I’m finally able to use my hand and lower arm again and so thankful it was not my right shoulder. It has created spasms in my right side of my upper back, so I can’t stand or do lots for long periods of time.

Wow, what I would give to be back to the old me, the challenges that I thought were so hard now seem like a dream.

It is a WAKE UP CALL for me, get stronger, never ignore your pain, my body was trying to warn me and I didn’t pay attention.

This had made me realize, that once I’m healed I will continue with Physio for strengthening and get myself in a different place physically.

Thankful to be writing again. 😊

#fibromyalgia #mecfs #arrythmia #celiacdisease #gratitude #pacing #positivethoughts #selflove

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Calmness is Power

To try and bring all your anxieties and worries under control is hard.

I have anxiety, have had it all my life or from when I could remember. The challenge I have with this and Fibro is it’s not just my mind that is affected. When I’m anxious or stressed it affects all of me, especially my heart.

I have been learning so much more about how it’s all connected, especially the sympathetic nervous system and how it triggers my heart and palpitations.

This quote is so poignant in helping me to see it starts with “Self Control Is Power” , power over what I’m thinking that my thoughts are powerful and can trigger my emotions and physical responses.

“Pure though is Mastery”, another quote is the “Mind is the Builder”, “You can’t live a positive life with a Negative mind”…..all good reminders of how we have the power to change the outcome. I’m a professional “What If” thinker and can emotionally and physically take myself to places that create so much havoc.

“Calmness is Power”, Peace, be still. I was doing so well with meditation and giving that time to myself before I would start each morning, I kept it up for months, I have been slacking and my lack of self control and peace is so evident.

I can’t keep giving to those around me if I’m not going to take care of me first.

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Can we really be Authentic?

I’ve come to realize that Invisible illness and personal challenges when we are in public and private do not allow us to be ourselves.  We have the persona that forces us to be what is pleasing the people around us.  It has been proven time and time again that most only want to know the good and not deal with the issues we may have.

I feel our challenges that can be seen vs unseen and navigating ourselves in the world can turn us into liars, think about it, can we honestly answer the questions truthfully about how we are doing?

So, when I talk about this it’s more in reference to those we meet through our jobs, our family, church family and others that know us.  I don’t expect the people we see about our day that are strangers to be entitled to our personal lives and you keep it friendly and respectful.

As I go through my job, engage in conversations with my family, share struggles within our church family, you don’t want to be a ‘Debbie Downer”, but you want to be genuine about what is really going on in life.

This has been a realization for me today, I cannot be my authentic self if I cannot be honest about my limitations and struggles whether it be about me personally or the challenges we are facing as family.  I no longer want to give the answers that are short and sweet, that will make everyone comfortable.

When I’m asked how I’m doing I now say, that today is okay, or for right now it’s all good. I’m not going to let you minimize the strength it took me to be at work today or minimize the emotions we are feeling about our life situations, yet in spite of all that we are still here, smiling and giving our hearts to others.

Here’s the thing, we are amazing at being there for others, hands down we will be there to support and lift where it’s needed, we accept without judgement the challenges others face.  What we are asking for is the same.

Is that too much to ask?

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