An apology that I have been so absent in 2015 and not answering comments properly. Please know that I have read them all and appreciate every one, more than you’ll ever know. I’ve been having these episodes, which take days to recover from and I’ve also felt really busy, which always perplexes me when I used to work 50+ hours a week, but I guess it’s because I have so few productive hours now.
As usual, I schedule far too many appointments and I feel like I need to keep them all or I somehow put pressure on myself to follow every suggested lead or keep up with the things that should help me, like therapy — stay relevant to my doctors or something. From now until the end of April, I have 2 – 3 appointments scheduled every single week. It’s ludicrous, I know. I KNOW! But I have a hard time deciding what I should forego. Strain-counterstrain therapy and mental therapy every few weeks, a new sleep study and its follow-up, ACTH stimulation test and its follow up, pituitary tests, thyroid blood draw, ND follow-up, new gastrointestinal specialist, new rheumotologist/possible mast cell specialist, new neuroopthomologist, new headache specialist (a female Buddhist monk neurologist, how cool is that?), dermatologist (which I will cancel)… plus, I really want to get a massage sometime this year, I really want to get outside with the dogs when I feel stronger, I have to do taxes (shudder — this takes days), I have to challenge my health insurance rejections, I have to submit all my compounded Rxs to insurance and order copies of medical notes from the last 6 months (sooo much paperwork), I am still plugging away at my ME/MCAS emergency protocol packet, I want to hang some of the cemetery walk photos I took last year, I need to make some roasties and soups and freeze them, I need to shower, wash my CPAP, do my laundry, wash my bedclothes, order compression stockings, spices and a few supplements, get a new medic-alert bracelet, get a new driver’s license (one can dream), get a new Irish passport (one can dream bigger), PLUS I’m trying to find time to practice my brain retraining (Gupta Programme) on top of meditations, cooking, eating, requisite TV watching etc. etc…. It’s ridiculous. [Cue Bonnie Johnson commenting below, YOU’RE EXHAUSTING ME, LIZ!! ;)]
So, point being, thank you for reading, commenting, not getting responses always, understanding and supporting. Love each and every one of you. ❤ ❤ ❤
Rag and Bone Shop of the Heart 
HOW DID U KNOW, LIZ?! U SURELY DO–HALF WAY TO MY GRAVE! I’VE HAD 4 BAD MONTHS–ONLY ABLE TO WALK A FEW MINUTES–PULSE JUMPS TO 130. MY SON-IN-LAW GOT ME A TRANSPORTER CHAIR SO HUBBY CAN GET ME TO THE VERY ”OCCASIONAL” APP’T! JUST TURNED 70 & I GUESS I’VE ADDED POTS TO MY RESUME. HAVE U BEEN WATCHING ALL THE TALK ON THE NEW NAME FOR CFS? WHAT DO U THINK? NOW–TAKE IT EASY FOR AWHILE, GIRL!! GOD BLESS, BJ.
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Hi Bonnie,
I’m Elizabeth’s mom. I’m also Bonnie and I just turned 70 on January 8th. I love the wonderful support all of you give each other.
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HI, BONNIE–HOW NEAT IS THIS? Yes, I love Liz’s blog! Have u both been keeping up to all the news on what is now ”Systemic Exertion Intolerance Disease? Find it all on Cort Johnson’s blog. I learn so much from him.
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Elizabeth, I felt breathless, just reading all of your BIG list of “to do.” I don’t know how you are going to accomplish it all! Please try to find time to just REST! 🙂 ❤
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Carol, here’s how I accomplish it: reschedule, reschedule, reschedule. Every appointment takes me about 6 months to actually get to it. Although, I did manage all 3 appointments this week! I’m wrecked, though. Today is a day of rest. 🙂
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I understand. I haven’t done my 2013 taxes, (at least I know I don’t owe them any money, so I won’t get in trouble), which is causing issues with medical premiums and pharmacy issues…and I haven’t showered in almost a week, I need to order a new mask, I have to hang some beautiful ornaments I got for my birthday (Feb 24th. Last year). The top priority things never get done, let alone the less important things. When you have two functional hours a day (that’s all the 5 minute bursts of energy added up), you can’t get it all done. As well, trying to gather the mental energy to do things you hate (like entering pharmacy receipts into stupid forms), is well nigh impossible. I’m trying to farm some stuff out. I can get my accountant to do my taxes- but I have to gather all the paperwork (and open my mail, which I literally have not touched since x-mas). We understand. If anybody doesn’t, they don’t have a chronic illness, nor do they have a loved one with a chronic illness. And if anybody gives you a hard time, tell them to get lost! Or, alternatively, send me their email. There is no need to feel ‘obliged’ to your blog! It us here to make your life easier, not harder.
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WELL SAID. R U IN B.C? AB. HERE.
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Thanks, Karen. That actually made me feel a whole lot better. I hold myself to such high standards. I hate that I can’t accomplish everything and accomplish it NOW. Thanks for reminding me that I need to order a new CPAP mask. Another appt…
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I am, Bonnie. If you would like to read my blog (which I haven’t made fully ‘public’ yet), it’s awalkingallergy.wordpress.com. The password is KEWN. Do you have ME, or MCAS? I don’t have ME. I have (unconfirmed) MCAS, systemic inflammatory arthritis and hypothyroidism. (It’s like a resume, “And you? What chronic conditions do you have?”).
Oh, and Liz, the pollen is beyond hellish here- does it affect you?? I’m starting to think I live on the wrong side of the mountain from an allergy point of veiw. Maybe a desert would be better. Then again, forest fires in the summer would be infinitely worse. That’s it. Gotta win the lottery, buy four houses and a stunning motor home, and move from house to house depending on the allergens… Or, get a really top notch ‘bubble’.
K
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WELL–I’VE HAD CFS FOR 14 YEARS, ARTHRITIS IN BOTH HIPS & KNEES, ORTHOSTATIC INTOLERANCE WHICH I BELIEVE HAS BLOSSOMED INTO POTS–THUS NOT MUCH WALKING. WE LOVE GARDENING BUT EVER YEAR IT GETS HARDER TO KEEP UP, LET ALONE START! JUST TOO WEARY!
LIVED IN LADNER. B.C FOR SOME YEARS; LOVE IT THERE BUT AB. IS BETTER FOR ME. THX FOR YOUR BLOG INFO!! GOD BLESS.
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I think about this all the time – the best place to live. I really want to trial a dry climate. I grew up in Dublin and then moved to Seattle, pretty much identical climates. We should all invest in homes together – one in the desert, one by the ocean etc. Or get a caravan and move throughout both countries: a traveling, mast cell degranulating community. 🙂
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okay, i’m dying to hear more about the female Buddhist monk neurologist…
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Lindsay, I’ll let you know how it goes. Here is that doctor’s link: http://www.swedish.org/physicians/dongmei-liu
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This is EXACTLY how I feel everyday! So many things I need to do, so many things I want to do, so little time, and so little energy. I just have to remind myself: one step at a time, and I can’t do everything. It’s okay to let some things go. Hang in there, and thanks for letting me know I’m not alone. 🙂
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Lori, it’s hard! My to-do list most days is: EAT. Try to sleep. That’s it. And it’s even worse when you’re a type-A perfectionist. I’m meant to rule the world, doesn’t my body know that?!
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It does sound very exhausting! Hugs 🙂
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Do we ever truly learn to pace? Thanks for the hugs. 🙂
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Only in the hope of doing too much! 😉
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Sounds just like my to do list! but I’m trying to live the rule – get one thing done a day and feel good about that. priority is to get 1 hour outside (literally sitting on my stoop all bundled up on a fold up chair) for fresh oxygen ( along with Brooklyn exhaust) but better than indoor air, and one hour lie down in the pm which my helper/babysitter forces me to do or id be on the computer/ I also cancelled a lot of appointments and realizing my body needs rest more. I managed to make it to a gig for the first time in years (a daytime kiddie rock band) and actually danced for a few mins and wore a sparkly top! Paying for it this weekend but not so badly! Now I must go order my supplements (on my list for the last week and have run out of some) xoxoxoxox
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Aisling, gig? sparkles? DANCING?? That makes me so happy!! Soon we’ll both be in the mosh pit of… oh wait, I don’t like any mosh pit-type bands anymore. Ok, soon we’ll be sitting on grass at some festival or sitting in the gods of a concert hall, watching some lovely classical music. :))
You’ve really influenced me to try to get outside. If you can do it in Brooklyn cold, I can do it in the 58 degree weather here. It’s just the bundling up part takes so much out of me! XO
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And as Ive said every day for the last 3 weeks – tomorrow i’ll do the taxes!
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I think I’m putting off taxes because last year we owed $8,000!!!
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