We live in Washington state and the air quality has been terrible lately… my son usually only has post-illness asthma but yesterday needed rescue inhaler about 10 times. We’ve been through the recovery drill before and added some meds to help stabilize him. My breathing has been fine but I’ve noticed increased anxiety and brain fog. It’s Really bad today and eating stress French fries which won’t help matters… Hot bath n lullabies here I come.
I wear earplugs more often than not. It’s hard getting the ‘just right’ combo of fitting comfortably, blocking most noises & hearing conversation when I try to. We’re on a road trip and it’s been a challenge keeping track of which pocket is the temporary home for a variety of ear plugs when trying to hear my son over road noise. We agreed to stop for snacks n gas and I’d wait to put the plugs back in til we were back in the car listening to podcasts or audible blasting through the car stereo. My main goal was to use the restroom but the lines were stunning so I found my son browsing the chips, paid and went back towards restrooms with a plan to use the family/handicapped room if the door if it was open. I am definitely handicapped just usually don’t look it. The door was open so I went for it, still smiling to myself because the cashier ringing up my son’s chips seemed especially kind. Maybe it’s a northwest thing. As I shut the bathroom door I noticed my new super short haircut highlighted the giant neon orange carrot of an earplug still in my left ear. Niiiice look! I’m sure the cashier was trying to figure out if I was a danger to myself or others. Slipped the carrot into its pocket and tried to straighten my crazy car hair. Onward!
I feel like such an idiot. I’ve lost the better part of the last ten years of my life due to constant migraines and crushing fatigue. Thyroid meds gave a short lived boost (like so many other things; well approx 6 other things) and then back to pretty darn terrible. During the latest blood draw to check thyroid levels (maybe my 10th ever) the naturopath added a check for iodine levels. I was at 25% of recommended target levels. My ND recommended kelp snacks which seemed to not cut it so of course I googled. Been supplementing with iodine caps/tablets (favorite has tyrosine added) and the first day hours after taking first capsule, I cleaned my entire kitchen for the first time in, ever. That was about three weeks ago. I’ve since, among other things, taken my son camping twice. Last trip with his ADHD friend. Many other milestones. Excited for the possibility to get to live some normal life rather than limping along feeling like rip van winkle as the world passes by. Fingers Xd.
I’ve been a little 2 steps forward, 4 steps back. Some recent hormone tests showed cortisol through the roof, all other hormones tanked. I was told my stress was just too high, which seems ridiculous since I haven’t been able to work for Quite a while and my long suffering husband does his best to pick up all the loose ends. I’ve been resigned to this new normal for quite a while and feel no capacity to ‘stress’ about it. (Though family and friends say it must be stressing me. Believe me I know what stressed out feels like and my MO is more like watching the world go by but breathing in and out. Diaphragmatically whenever the notion pops to mind.) I can meditate really well due to brain fog creating a blank slate. So what gives.
After much research and little improvement, ordered second round of hormone tests but see that even if a referral to an Endicrinologist leads to an answer, it’s nearly guaranteed to not have a good result improving my state of well being.
In the past adding cbd oil could help daily functioning quite a bit but go-to brand had been out of stock for quite a while. Scored 2 bottles this weekend and started trying to recover. It took only a morning to feel 80 percent better. Going to spend the week looking to stock up on the cbd oil; also looking forward to receiving 2 new migraine protocols in the mail this month. One is a vagus nerve stimulator (price tbd but first month trial is free, yahoo) and the new migraine prevention monthly shot. Fingers Xd all around!
I’d hired a life coach who did not know what to do with my low functioning CFS/me mast cell self. It was super frustrating and expensive. Since discovering she was trained by Martha Beck, Google entered into the picture and many podcasts, books, PDFs have helped me start sorting out my life now that I’m feeling better.
I LOVE this blog post about using spoon theory to also notice what gives you a spoon, even if it’s a tiny espresso size.
We’ve been gone on vacation to Whitefish MT the past week; it was a success in that I had more energy overall and could participate in meals and some walking outings. I’m hopeful that this week’s DUTCH-hormone testing at ND will improve things further.
In the meantime, I’m struggling a bit with finding a balance in pushing the envelope to ease out of the habits of just squeaking by. I could use some advice! Setting modest daily goals for now.
I made the decision to hire a life coach probably 3? months ago when I was feeling fabulous and thought I’d get back to work. In hindsight I think I felt so good because of finally getting first bit of thyroid T3 meds and doing lllt laser treatments at same time which combined for superstar energy. I absolutely will get back there! In the meantime, this coach of mine has really been a mixed bag. I’ve thought about just taking a loss and cancelling last sessions but figured I’m used to low value specialist appointments. The person was trained by Oprahs coach Martha Beck, and seems to want people to find their ‘real’ calling to replace typical career. After being sick so long I’m all about helping pay bills with a steady income. Now that I’m feeling pretty good again (thanks increased T3 & lllt!), the coach wants me to ponder how I’ve benefitted from being ill so long. Erm– I am the master of looking on the bright side, but this smacks of how could I have caused Cfs and ‘hung onto it’. Puhlease. It is not my fault doctors are ‘practicing’ medicine and can’t diagnose thyroid resistance to save their lives. My life.
Onward to goal setting. Any other ideas please share, have Google-fatigue on Cfs recovery steps which amounts to preachy ridiculous stuff like graded exercise. Without the T3, exercise would have dug me further in the hole Fer Sure. On bad days I just wave my arms in the air for a couple mins. Ha!
I’m excited and beyond PO’d all at once. Going with excitement for now. Within 24 hours of ordering T3 from another country out of complete desperation and lack of faith in healthcare providers, my naturopath finally agreed to increase T3. I’d been on a microscopic dose of 5mcg cytomel twice daily since I begged for it about 6 months ago. Last night & this morning has doses of 7.5mcg of compounded/sustained release T3 and had a full, functioning, brain-on day. Shopped at so many stores I lost track. (Nope not manic, we have a trip coming up and I’ve done zero to prepare; thought I’d just be tagging along like a potted plant.) Made dinner, cleaned, did mom stuff. Amazing!
I googled thyroid and Cfs and was stunned to find this article referencing ideal ranges for those with low thyroid symptoms but ‘in range’ results. I’m going to print off and bring to ND to facilitate future dosage conversations. Here’s the page; test ranges are about halfway thru article.
I may or may not have ordered T3 meds from another country out of complete desperation. Why is it so hard to get the correct thyroid meds at the correct dosage. Loving the crumbs of Dr. Lowe on the internet & pasting a link. His out of print books on T3 and metabolic syndrome are exorbitantly pricey on eBay/Amazon depending how next days go, may do it.
Made a big pain/nausea connection last night. My son and I have many food sensitivities. Mine seemed to start early thirties but he was born with them. He’s been having much less pain and nausea since starting Mast cell activation disorder treatment, but I’ll still check in a few times a day to ask his pain/nausea level. He hasn’t been above a three in either (down from 7/8s) since starting MCAD Tx.
Was googling my Fibro muscle pain during mild insomnia last night and saw Dr Myhill references to lactic acid/d-lactate. BINGO. We have been trying to sneak in some dairy now and then to ensure good calcium levels and no more broken bones. Turns out dairy causes quick path to lactic acid overload in folks with mito challenges. In neck/shoulder for me due to old scar tissue from work injury; tightness in that location used to lead to chronic migraine til I had insane amount of Sarapin/B12 trigger point shots to get the spasms to ‘let go’. For my son, dairy seems to be correlation between rising from 0 to 3 in both stomach pain and nausea, as well as random muscle aches in legs and shoulders, and very noticeable fatigue. Daiya fake cheese, we are coming back to you!
Report on food allergies/EDS connection: https://www.medpagetoday.com/meetingcoverage/aaaai/31471
Dr Myhill link: http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
Today at lllt treatment the doc mentioned a book ‘Superlearning’ which had a profound effect on his life, going from ADHD barely passing high school to implementing certain techniques during college which helped him graduate with a 4.0. My whole happy family (and our extended families) struggle with ADD inattentive type as well as EDS related poor health. I cannot read this book fast enough (wish it was on Audible) but we have a brand new homework & reading-time ritual: “Alexa, play Super Learning music.”
Luckily there are some bedtime music options available as well, also on YouTube. Excited.