Thursday, January 19, 2017

Donita 2016: Self-Care for the win!



The theme for Donita 2016 was Self-Care.  We made radical changes to our household during 2016 to allow me to prioritize truly taking care of myself for the first time in a long time, maybe ever.  That's not to say I never did things for myself, but I made a conscious effort to say 'no' when it was the right choice for me and my health, not always considering the needs' of others first.  That's the right choice for me in this season of my life and I am in a much better place now because of it.

So what exactly changed in 2016?

On the health front, I reduced my work hours, at the recommendation of my PCP.  What a difference that made! Instead of 4-5 headaches a week or a headache lasting 4-5 days at a time, I'm maybe experiencing 1-2 headaches a week and I haven't had a migraine in months (knock on wood!).  I'm so thankful that my employer was able to accommodate this recommendation from my doctor and our company had some changes right around the same time that made this arrangement beneficial for all involved!

For the first few months, I would literally hit the couch and sleep hard for hours every afternoon, either being woken up by dogs who were hungry for dinner or the hubs coming home from work.  My system was truly just exhausted on every front.  I was on empty.

I had a lot of change in medical professionals this year.  In the spring, my long-time PCP left private practice.  This was sad, but I think I've found a new PCP who is respectful of my personal health history - we'll see if that continues to work out.  I auditioned 2 rheumatologists, but didn't feel like either was a good fit.  One was clearly not inclined to work with a fibromyalgia patient and the other, the fibromyalgia 'specialist', had less than zero bedside manner, didn't respect me, implied that my weight was actually the root cause of my fatigue, told me to fill out a mental health assessment designed for a doctor to complete and left me there for nearly an hour so I could 'truly evaluate my situation', and as it turned out, gave me a lot of advice based on debunked research that would have made my health worse (including a study on CFS as this doctor told me that CFS and fibromyalgia are the same thing... just stops on a continuum.  Which I can't find any research to support.  Anywhere. :side eye:).

Since I wasn't having much luck with the traditional medicine side of things, I looked for alternative options.  I increased my level of massage therapy (what has turned out to be a temporary improvement, but without lasting effects, sadly).  I tried acupuncture, which did help with my inability to sleep (worth it, even if only temporary!).  And, as my new PCP put it, 'went full naturopath' by consulting with a nutritional therapist.  Lydia and I started with Hair Tissue Mineral Analysis and learned that I had some serious deficiencies and imbalances in minerals and nutrients that affect how my nervous system functions.  Since research suggests that CFS and fibromyalgia are both rooted in nervous system dysfunction/hyperfunction, this was the first thing we decided to address.  I have been following her recommendations since the summer and the difference is wonderful!  Even the hubs can tell!  I'm not 100% yet by any stretch, but the soul-killing fatigue is easing.  This test also showed what my body had been telling me all along: I didn't have enough gas in the tank to start the traditional fibromyalgia 'treatment' plan with graded exercise (the more, the better, up to 2 hours a day! O.o).  Had I listened to the 'specialist', I would have only made my situation worse, chemically and mentally.

In addition to the naturopathic plan, I've continued practicing yoga and have started working on a body-centered inquiry form of yoga called yoga nidra.  This practice is intense, but rewarding.  You can look into yoga nidra or iRest yoga nidra if you're interested.

It became clear to the hubs and I that we needed more control over our living environment to reduce or eliminate the constant drain on my immune system.  I've had issues with mold in the past and despite the existence of a simple urine test to evaluate for mold toxicity, I can't find a doctor who is aware of it.  Since it requires a doctor's order, that makes it difficult to get.  sigh  After finding mold in our current rental (and confirming through home testing that it was indeed black mold), we decided that it was time to look for a home to purchase.  Unfortunately, mold is an issue in nearly every rental I've ever seen, and the 'solution' of painting over it is only a cosmetic fix.  The spores still enter the air and can still make you sick.  What we needed was the control to remediate the mold, which only comes with a deed (or a lawsuit and I definitely don't have spoons for another one of those!).  Thankfully, we were able to purchase a home in the spring, replace the HVAC system, install a whole house water filter and confirm there is no mold in the house.  We replaced the flooring on the entry level with a durable, hard surface floor to allow for easier cleaning and fewer allergens.  We are continuing remodeling work on the house and starting to work to make it ours, but not being constantly introduced to more immune threats can't do anything but help!  Also, in the last few years, our office has been completely renovated and there was substantial mold and rot in our old roof.  Between painting all the surfaces (sealing in the years of cigarette smoke from former tenants who allowed smoking in the office), replacing the carpets and removing all the rotten, moldy roofing materials, I've seen a significant reduction of symptoms while I'm at work, too!

Epsom salt baths aren't an indulgence - they are a necessity!

All this has resulted in a better level of functioning for me.  I'm still not able to do as much as I used to; I still have bad days; I still just want to sleep for 14 hours at a time sometimes.  But it is better.  I am able to help a bit more around the house and generally feel like much less of a leech/sloth that I had before.

And I'm happier.  Before all this, I felt like a ghost of my former self.  Not only had my personality changed, but I no longer had the energy or desire to do the things that made me ME.  I am starting to feel like myself again and I finally have the energy to start thinking about what I want for my life and our life together.  And that gives me hope for 2017 and beyond.


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