God help me, I think I lost the signal.
Writing is my two-way radio, particularly since I spend so much time in solitude, which really depresses me only four to five times a year. A very specific void opens up and I know I need to see and visit with people who find the same things as funny as I do.
Otherwise, Monty and my parents and staying up late drawing or reading or writing have taken up a lot of my life. It’s been a hard but good life, and I imagine all the time what it will be like when I’m not sick anymore. I watch people working their everyday jobs, knowing they can’t know how lucky they are to do such mundane things without a second thought. That’s the typical way, and it will be a really incredible moment when I shower and don’t give two thoughts hesitation until I’m applying face lotion later and realize I didn’t have to plan that shower I just took.
But back to my two-way radio. Something happened. I’m on one channel and the world is on another. Somehow the signals became switched over the last few months, maybe years…I’ve lost count. I only know it was much easier once, this writing. Suddenly the process became very arduous and tied into webs. I still write everyday. I still turn to it. But I know I’ve grown afraid, I’ve let the voices inside get to me and keep me from sharing what I’ve written out of fear. That’s pretty foolish Mary. Thanks, I know. Which is why whether this post is good or bad, I apologize but I have to post it. It’s the only way I know how to hush those voices and thoughts. It’s the only way to grasp some kind of momentum, move on, and not lose my inner voice completely and my ability to hear the world through my radio. I haven’t stopped listening, it’s just been harder and harder to make sense of the output.
This is halfway because my cognitive function has felt toyed with. I lack mental clarity 
and trust and staying on route. My thoughts meander and pivot like goldfish in the back of my head and it’s impossible to catch one before they’re swimming in a whole other direction. It’s so easy to convince myself there’s too much at stake (really there’s kind of barely anything) and throw in the towel when I’m inches from the finish line.
I’m going to try hard to stop doing that. I’m going to go ahead and hang my dirty laundry out to dry, that way it can’t convince me in some corner of my mind that a fleeting thought should make up such a definite decision.
I can barely keep my eyes open. But I promised myself I would finish this, because I know I’m the only one who can get myself out of this sticky web that has me all balled up and disoriented.
It’s been a terrible a day. I’ve been crashed for weeks and weak as hell. I finally regained a little strength today, but when trying to fill two prescriptions at my old stomping ground, Walgreens, one was denied by insurance and the other has some manufacturers shortage. They told me to try calling back in a month to see if they would have it then. A month? It’s not socks lady, it’s medicine I need and take everyday! All my energy and emotion went to trying to fill this simple prescription, and my poor mom was back at putting out fires all day while still trying to recover from the Holidays herself. Matt has been a lifesaver with his reassuring voice and enthusiasm to help–an encouraging voice that we’ll get what is needed. I’m lucky to have good people in my life. I know it.
I have enough medicine to last me until tomorrow. If Walgreens doesn’t come through tomorrow, I don’t know what I’ll do. Figure it out like we always do, but I hate how much of such precious, limited energy I have all goes to figuring out how to fill a prescription that life is not doable without. This medicine controls my extreme restless legs/body and the skin crawling I get on top of it. It is pure hell trying to exist without some type of medicine to quell the feeling. It’s also hell that suddenly you call to refill what should be easy and are told there’s a manufacturers backorder and “good luck finding that.” It’s a complicated world, and every month is like this. Never is it a simple refill and go.
Still, I’m lucky I don’t have to handle all of this on my own. But it’s just too much some days, and all you can do is let out a good cry and remind yourself it will be OK. It’s just overwhelming, and this is one aspect of navigating an orphaned disease I wish the NIH could see. This tiny aspect of it–nothing compared to what others endure– and still the amount of time and space and energy it takes up in my tiny little life is uncanny. You’re left to fight battles left and right, but you’re not left with any energy to do it. If you’re lucky you’ve got someone to help you–but that is pure luck it seems.
Anyway, this was supposed to be a post that explored my response and take-aways to the NIH reply to our petition. But I’ve been trying to finish the last 10% of that blog for a month now. Everything is slowed down–mind, body, talking for gosh sakes. I will finish it, but first I have to find a way to get the medicine I need, then I need to slow down long enough to get my radio back on the same channel as the rest of the world. It’d be easier if I had some strength and didn’t feel weak as feather carrying a stone of a body, but I imagine that will come back to me in time.
I can’t stay awake anymore. But I didn’t want to let the voice, the hindrances win. The web tangle me up to where I couldn’t emerge whole. I’m the only one who can get myself out of this writing mess, so I’m hellbent on doing it. I ask you to wish me luck that tomorrow goes better, and I can concentrate on ideas and not convincing Walgreens reps that I’m no drug addict and would just like my medicine so I’m not living in misery, with a cherry on top, please.
OK, I’m sorry this isn’t more substantive. It’s just the first step through this damn ring of fire keeping me from doing what I know I’m capable of, what I feel called to, but I’ve somehow been convinced there’s not any value in. I’m breaking through the wall, if only to remind myself that fear gets me no where and if I could just trust myself like 10% more, I’d probably feel better about everything.
At any rate, thank you to those who’ve stayed with me through these writing ups and downs. I know there’s been a lot of downs, but I believe there will be more ups to come.
Health, Happiness, Goldfish In the Brain
FibroM.E.-Awesome 
~*<3*~ HAAAA
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This is anything but insubstantial.
This is my path, incurable pain and no help in sight. I’ve been crashed for a month now and have danced with death, and my doctor doesn’t believe me or care, and there are no services here and the meds haven’t been helping. And I’ve been laughing and watching movies with my super-supportive loved ones, but damnit sometimes communication breaks down and things seem really opaque and uncertain.
Look, sis, I NEEDED THIS POST. I needed it today. Self-doubt demands that you downplay how absolutely necessary your honesty is but we need you; your weakness and strength, your hopelessness and your hope. We need all of you, nothing left out. <3
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Thank you so much for writing to me. That ok self doubt voice can be very loud, but it’s voices like yours that are louder and deserve way more attention. I can’t tell you how much your encouragement means to me and how I need it. I don’t know when this self doubt thing took over but I’ll just do my best to keep writing through it and keep my fingers crossed that y’all will stay with me while I untangle out of this web :) thank you for reading and writing… I will keep it up. Hopefully I’ll get a little better first and my brain will work a little better too :) but hey, I’ll work with what I have. Thank you again, really. It is really special to hear from veritable strangers that somehow feel like kindred spirits. In it with you sister,
Mary
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Hey buddy, just saw these comments from a while ago.. I hope you are doing at least a little better. And maybe, hope of all hopes, you’ve found a doctor who can help you. Thinking and praying for you-
Mary and Monty
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Also SCREW YOUR DOCTOR.
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This is not socks.
On Wed, Jan 9, 2019 at 11:22 PM FibroM.E.-Awesome wrote:
> Mary Gelpi posted: “God help me, I think I lost the signal. Writing is my > two-way radio, particularly since I spend so much time in solitude, which > really depresses me only four to five times a year. A very specific void > opens up and I know I need to see and visit with peop” >
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Hah, that should have been the title.
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Your writing always comes at the right time, and says exactly what’s needed. You bring us all together and make us feel less alone in this fast paced, conflictual, assumption laced, world that’s passing most of us by while we’re stuck dealing with Walgreens (or CVS, or insurance, or doctors, or whoever put out those dose “suggestions” for pain meds in the hopes of targeting the opioid epidemic, but took aim at the wrong target) yet again this month/day/hour. I’m sorry your brain feels gold fishy today! Hopefully tomorrow will be less crowded in the fish bowl (: Keep writing! Although you are super critical of yourself, we don’t notice what you’re noticing! All we notice is that someone out there is giving a voice to the crap we deal with everyday, yet somehow lets some light in all our darkness! Thank you for doing what you do! I know you’ve helped me a ton, and I’m sure other people who read your posts will whole heartedly agree with me!!!
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Dude, that means so much to me. I wish I wasn’t so tortured about the writing I put out there. I don’t know what this voice is that tries to hinder me at every turn, plus my brain having zero memory and working at a slow pace makes it triple hard, but it’s worth it of course. It’s my salvation in a lot of ways, and a silent way of connecting with people just like myself. I really appreciate the encouragement and will remember your words when my mind is telling me to not to publish and to do it later.. I never do. I get lost in the web and it becomes impossible. I expect this very long stage to end if I can just keep writing through it and keep them shorter and more frequent instead of so long. It’s a mess I’ve crawled into, but I expect to get out, and I’ll keep it up because the goal the whole time was to make even one person feel less isolated than I did. If you’re that person then hey! So be it. I hope you do remember you’re not alone and we can be reminders of hope and love and connection through this tough time— a time I know won’t last forever. Hang in there and thank you for writing me :) love mary
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Mary, you got this. I love reading your updates and knowing your story. I have a sister who can relate to your medicine situation and thru reading about your life, you’ve helped me better understand and sympathize with hers! Thank you for sharing! I will say a little prayer for you.
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Thank you Michele.. all the best to you and your sister. Yall hang in there ;)
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Mary, In all this pain and suffering, you are a light in this world. I don’t even know you but when I read your posts, there’s always humor, strength and hope entwined, which is actually uplifting. I pray for you and for all if us for a miracle healing for us. We are too wonderful to be stuck at Home and in bed with this debilitating disease. God bless you!
Maria
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Thank you so much Maria. Your words mean a lot. I’m trying to get on top of this crash so I can concentrate more on writing and the petition. Part of that means letting go and resting, which I’ve done a shit tone of. But I crave to do so much more. I pray things will get better for me and all advocates and everyone sick so we can fight this battle on it’s rightful battlefield and make the real changes this crap disease deserves. But mostly, I am so incredibly thankful for people like you who read and write me and reach out.. it helps a lot when I doubt myself which is useless and constant. Thank you though, it really does mean the world when I’m struggling with the thoughts I have. Hang tight, and truly, thank you.
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Sending you more than luck that tomorrow is better!!!
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Thank you SICKSTER! I love you. Let’s kick some ass this year. I’m done being sick and waiting. We all are, and it’s time we keep going bigger and bigger. Miss you.
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Hi Mary! I need that restless leg stuff too, requip, the generic version though. iAd to back off of it a bit though because it makes me nauseous. Ah the life, lol. Give Monty hugs, and do your best, that’s all we can do after all.
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Thanks Sue… hang in there, we’ll get there. :)
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