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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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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Physio Follow Up

I’m thankful to be in the CCDP program at Woman’s hospital. I had my final follow up with Physio and realize I have not been implementing the changes I need. She followed up on our last appointment in January about my posture and exercises to do, my commitment to at least getting out a walking a couple of times a day even for short or very short durations. So what did I do with that? Nothing, yet I sit here and feel there is no improvement.

I have the syndrome most women have, especially mom’s, I don’t take care of myself, I don’t put myself first and make sure I’m working on healing, coping or adjusting.

Learning more about aerobic and anerobic when it comes to exercise and how I need to stay within my heart levels to not push myself into anaerobic states, which is what I seem to be doing all the time. When I made the comment to the Nurse Practitioner last week about it’s been a years since my diagnosis and I should be getting all this by now, she said that is still a very short time and these changes and adjustments take some learning and it’s about changing bad habits.

I need to go easy on myself and be kind and patient with the changes I need to make.

😊❤

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Broken or Fiercely Strong

In some ways broken in other ways fiercely strong.
To live this life in all that we deal with shows how incredibly resilient we are.  No one with chronic illness chooses this life and we wouldn’t wish it on our worst enemy…..well? ….No just kidding.

I have had to learn to surrender to these illnesses, yes I have several.  I’m a type A personality and I’m used to being overly organized and very task oriented. Now throw that into chronic illness that laughs at your schedules and task lists. So the adjustment to this is huge. I’ve know for years that I was not well, but in my normal fashion of just pushing through and keep going at all costs, I have crashed.  You can’t give what you don’t have and if you don’t figure that out on your own and make adjustments the body will start to fail.

So now I’m learning all about pacing and what that means for my life and what resting and taking care of myself really means for me in the day to day.

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Saje Relief

These are my friends. Been waking up with horrible knee pain during the night. It’s so bad I can’t even straighten my leg. I don’t know what’s changed. 😥  I always try and find an alternative to manage my pain.  These products are a savior to me, I can’t take meds for inflammation so this is my treatment.

Great products from one of my go to places.  47585967_127824991581607_4457082913913086311_n(1)

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