“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.

Posted in Boundaries, CFS/ME, Fibromyalgia, Mental Health | Leave a comment

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?

Posted in Austism, SPD, Aspergers, CFS/ME, Fibromyalgia | Leave a comment

Your Sensory, My Sensory

” Self-regulation involves monitoring and controlling one’s own feelings, emotions and behavior. It necessitates the ability to block out irrelevant stimuli, control impulses and persist in tasks. Sensory processing is foundational. It is the ability to take in cues from within our body and from the environment, process them accurately, and prioritize what to focus on in order to perform daily activities.

How we can so easily trigger each other.  I have sensory issues because of my Fibro and my youngest has sensory because of ASD, when we are all set off by each other is does not bode well.

I’m still getting used to her diagnosis, for years I chalked it up to being over emotional and maybe behavioral but completely realize now it’s all about her sensory issues related to her autism.  Knowing this now helps me to be more patient and compassionate towards her behavior, but it’s so hard when it triggers my own sensory issues and I will want to lash out because I cannot cope either.

Time to go back and read Self Reg Parenting, the task of self regulation and implementing it in our daily lives just seems so overwhelming for me, but it must be learned.

I’m the one who plugs into how the kids are doing, reading the cues and navigate our way through how they handle and respond to experiences around them.

I’m so exhausted myself and more days than not my brain fog just robs me of my own ability to regulate. Time to educate myself, this will benefit us both.

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Embrace the Unknown

Embrace the Unknown is not my go to thinking, I’m a planner, need to know what to expect kind of person. So getting this new diagnosis for our youngest has left us anxious and worrisome of the future.

They rely on each other and our hopes of them being good friends and being close is what we strive for. We need them to love and respect each other and be the for each other especially later in life. We are older parents and we want to be comforted by knowing they actually like each other as siblings and will have each other’s backs.

Bibi and KK (nick names) do almost everything together, although they are 3+ years apart it still works. KK helped Bibi lots in social situations and they give confidence to each other, they are both on the spectrum but have opposite strengths and weakness but put them together and they are solid. So we can see why they can be there for each other.

What has become hard since finding out last week that KK is also Autistic is we can no longer sit in the comfort of relying on KK to be the support for Bibi. Our anxiety and worry of the “what if” thinking has creeped its way back into our thinking. My husband is taking it the hardest, now the pressure of getting finances, health and all that comes with helping your Autistic child transition into adulthood has now doubled.

Why we go there mentally I’m not sure, because the day before we found out the diagnosis, we didn’t worry, we see how they navigate and work hard in coming to understanding who they are, working hard in their therapies or intervention, all things we had in place before we heard the word Autistic for KK.

So time to come to terms, accept, plan and move on. Negative thoughts will only bring negative results.

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