Autism Again

The news was expected but unexpected. My youngest was convinced she was like her sister and on the spectrum and we just were not sure. So at the same age of when her older sister was assessed, we paid private to have our younger daughter assessed as well. We were told at the time there was no way it could be Autism and we accepted that and moved forward to help with the challenges at hand. Keep in mind we are under the assumption we are dealing with a Neurotypical child that is battling mental illness perhaps and some other issues.

Fast forward to 10 months ago when we fully hit a wall, she was now not coping at all, could no longer attend school and OCD was off the charts, so we got weekly counselling set up, and brought her to Children’s Hospital to be assessed by the Mood and Anxiety clinic, doing everything we can to figure out the best support.

Now six months later and the psychiatrist and councillor are convinced this has to be Autism, so we are referred to Sunny Hill for testing again, but find out the wait is 18 – 24 months, we can’t wait that long so we ask around for the best person to see our daughter.

Now one month later and during the parent’s portion of the assessment to answer detailed questions about her history, we offer up the report we paid for when she was 11 only to find out the ASD assessment was never done. This turns into shock, anger and now guilt for not comparing the lists of tests done on my oldest daughter years back to even see if the tests done were the same. I came to terms witht the fact that this was not my fault, my contract was clear on what I was looking for, and it was not done. Three years wasted thinking we had done everything we could have.

Yesterday, on a Skype call we receive the news, our youngest is in fact also Autistic and Dr. G. helps us to understand how all these ongoing issues are not separate but collectively clearly show Autism.

We’ve been down this road, the feelings of bittersweet are familiar, the tears, the sadness, the relief of now knowing. All I want to do is hold her and apologize for having expectations that she just could not meet.
Our daughters are bright, strong, passionate, confident in who they are. I’m so grateful for having them in my life.

So now the journey to intervention and support starts again, I can’t wait to see the amazing growth and changes in her.

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Your Energy Envelope or Spoons

When you look at this photo and think this is how easily we can go outside our energy envelope.

One year in and many years of knowing that I was doing too much. was it Oprah that said or quoted “Once you know better, you do better” ?

I now cannot ignore that I am responsible to do better. How does that get practically applied to our daily lives.

I realize I actually need to “Plan” out my day, when I will work, schedule my breaks and switch between tasks so I’m not drained by doing one thing too long.

It’s so much to take in and balance and make happen, being so scheduled doesn’t leave much room for unexpected changes coming up.
It can makes us feel so hopeless about really figuring it out.

I’m looking forward to mastering this skill and just instinctly guiding myself through the day.

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Weary in the Battle

Chronic Illness I’m convinced can only be done by Invisible Hero’s, to not be obvious in our struggle, to smile and get through, not many could do this!

This past week has rendered me silent, this is not something that happens to me often.  Losing my cousin last week, finding out there may be another arrhythmia issue that may be a side affect of my afib meds, then other continued other issues.  Most days I push through and endure in spite of.

This was not one of the those times and I appreciate that without it being a conscious decision and probably a protection mechanism to shut down before I crack.  This likely comes from my childhood and my need to detach and cope.

I withdraw from everyone and just tune out, but realize now it would have been more helpful for me to journal my way through.  My past and circumstance have given me the ability to overcome, what choice do I have it’s either keep going or surrender.  The difficult part although compared to my childhood you would think is nothing, but not being able to physically do for myself and how easily stress, pain, sleeplessness and sadness can mentally drain me still surprises me.

Weary Superhero

 

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Expectations and Frustration

My doctors visit was another let down again.  Am I asking too much to be heard, to be supported?  Fibromyalgia even though gaining more understanding, is vastly misunderstood and by most doctors not accepted.

My family doctor at my request several years back did the referral to the Chronic Complex Diseases Program here in my city and within two years I was accepted.  Fast forward to a year ago, I was finally accepted in and after my initial visit with the internist, an 8 page report was sent to my family doctor.  I was finally heard and understood and even better the horrible way I had been feeling for years had a name and a ton of information for me to read and become familiar with my new normal.

My initial visit with him did not go well, his exact words to me is “Do we really want to call it that, you’ll just get depressed?”  He gave me a copy of the 8 page report and told me to go home and read it and make an appointment to see him in 2 weeks.  Ummmm….HELLO?  I was at the appointment, I know exactly what it says and this was specific instruction for how I could be supported by my GP.

Today was the absolute worst of the past year of appointments trying to get him on board.  He will only focus on my mood, which has been down lately, mostly due to adjusting to how I feel and my illnesses.  I’m totally and anxiety person, not much with depression but I’ve been showing signs of that over the past few months.

The CCDP in my visit last week gave me a prescription for LDN (Low Dose Naltrexone) common treatment for Fibro, but he out right refused to support giving me refills moving forward.  He resents at all doing what is asked of the CCDP and just want me to take an SSRI.

My friend said this to me today, seems he does not believe in fibromyalgia and thinks you are mentally ill.  OMG, shes’ right, I’m wasting my time, this will never go well or the way I need it to.

So today I’ve decided I will not go back to him, I just can’t,  he makes me feel like I’m doing something wrong, like I’m imposing.  He does not want to deal with me.

So now it’s time for me to take things in to my own hands and take the time to find someone who wants to support me.  I don’t swear often but today was full of colorful words.

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Is it Really Okay?

How desperately I want listen to this snail and do things at my own pace. Is it really okay? Although I give myself permission to take my time, plan my day, schedule my breaks and break down what tasks I may be able to accomplish, I’m still pulled by so many obligations and responsibilities.

I have finally after many months of denial and broken efforts to pace because I don’t know how to say NO, I have surrendered to the reality that I can no longer truly take care of myself and keep at this pace. So I have put in my application for Disability benefits and the opportunity to stop working and take care of myself.

I can’t even imagine being able to do this. I have literally been working since I’m 10 years old, of course that was babysitting and paper routes but I was working, always figuring out a way to take care of myself. So the idea of being home and TRULY taking care of me with the time to do it is mind boggling.

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Posted in Austism, SPD, Aspergers, CFS/ME, Fibromyalgia | Tagged | 2 Comments

It’s Mitochondria

I don’t know if you’ve had the chance to read the book “Chronic Fatigue Syndrome and Myalgic Encephalitis; It’s Mitochondria not Hypochondria”  by Dr. Sarah Myhill

This book has been a game changer for me.  I’m a Knowledge Is Power kind of person, I want to understand all the workings of what I’m dealing with.  I’m going to post some links to videos that talk about Mitochondria and how these little power houses work and how with  CFS/ME ours are sick and do not function properly.

The more I learn the more grace and understanding I extend to my body, rather than being angry or frustrated with the limitations, the knowledge helps me to be patient.  It’s funny how I expect more of myself and yet would never think or say the things I do to anyone else in my position.

This video is really great at explaining fatigue and why it’s important to stay in our energy envelope.

 

 

Sara Myhill It's Mitochondria

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Act of Self Love

Regard for one’s own well-being and happiness (chiefly considered as a desirable rather than narcissistic characteristic)

This is the definition of self love. It’s a journey to figure out what that means for you and how you get there.

I’m not working within my envelope, the symptoms I’m experiencing physically tell me that.

So I will get back on track, meditation, stretching, mindfulness and time to get moving.

Walking every day, treat it the same as the need to take my meds, eat, sleep, absolutely necessary for my physical and mental health.

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