Not intending to be dire or apocalyptic – but often being able to write a blog post, almost any kind of a post, signals, for me, the end of a difficult period where the brain power needed to do almost anything is just not there, and I’m not sure if it’s the waxing and waning of ME/CFS – or the beginning of the end of being able to write.
Those who know me, or have been following for a while, know how close to the edge of completely non-functional I live. A little bit worse, and no creative juices flow at all.
I wait it out, deal with whatever is causing additional problems beyond chronic illness and disability, pick up where I left off when I can function a bit again.
THERE IS NO POINT
in wasting any of my energy in railing against my fate – it doesn’t help, and doesn’t make me feel better. [Note: my brain supplied ‘railing’ as the appropriate form of protest against things bigger than I can manage. I was terrified for a few seconds when Google only supplied ‘fencing’ as a definition, until I insisted further and ‘rail’ as a verb came up. Phew!]
It is what it is until they figure it out, this ME/CFS, come up with a definitive diagnostic, find the mechanism(s) that cause it, find a treatment, find a CURE!
Today I had an interesting interaction with someone online who claims 1) to have had it, and 2) to have a treatment protocol that cured him. I had the strength of character to tell him I was glad for him, and not interested in arguing with someone online who has the ‘solution of the week.’ And to please stop writing to me.
As we tell new people, “Hope it’s something else – something that DOES have a diagnostic and a treatment.” If something actually cured someone, it is awfully likely they didn’t have what I have in the first place, but something with similar symptoms – and a CURE!/treatment/prognosis.
It’s vanishingly likely that he has something that can help, and I don’t have the bandwidth for another savior with a solution. I’ve been at this nonsense for 32 years.
There is a finite (ie, non-zero) possibility that now that they’re pouring money into long covid research that they will actually look enough to find a real solution. That’s where my hopes are being pinned; ask me in a couple of years if anything panned out – because governments finally realized that 10-30% of the long covid survivors were, essentially, getting ME/CFS and, more importantly to governments, turning from productive working tax-paying citizens into sick citizens needing the disability benefits they have been promised since they started working. Ie, it will COST the governments, and they may figure out a cure is finally worth putting some money into research, instead of telling people it’s all in their heads.
Hope I’m still around.
More than that, hope it works for people who are not recently ill – not that I begrudge the newbies, but I want to be at the head of the line.
Hey! Look! I’m producing coherent (okay, you may argue about that) sentences!
It’s been a rough time since I announced I had finished writing Netherworld, and now that I have finished proofing the text.
The plan was to format and then to get the cover out of my head and onto a page. It’s been weeks. Sometimes I just go read the end, fall in love with it all over again, and go back to sitting staring at the screen.
Because love hasn’t been translating into action.
So far it’s just par for the course, and I expect it will resolve itself, and it won’t hurt to get the new Airbook(name?) from Apple with the M2 thingamabob my eldest daughter says is good – not having the computer question resolved – should I format and cover on the old machine, or wait for the new one and bite the bullet and update my Scrivener which may have some of the things I needed that the previous version didn’t have?
But I can’t believe how much that tiny obstacle in my path stopped me from making ANY progress.
Physical problems have been the stumbling block
I don’t want to go into details, yet, on a public blog, but my already-strained-to-the-limit body and mind have had a huge task added to keeping us all going, it has affected sleep, pain, and comfort to an incredible degree, and taken every speck of energy I had.
Finding a solution took energy I didn’t have, and going outside my medical system, and I’m glad I did – but it won’t be over for a while, and it isn’t going to be any fun. Until AFTER September, and then there will be recovery.
And I won’t have any relief from taking care of the problem constantly unless I am very, very, VERY lucky next week.
I’m sleeping in 1-2 hour chunks. That should account for the feeling of doom – sleep deprivation is classified as torture.
So I shouldn’t worry, right?
Except that there’s always that one last straw, the one that breaks the badger’s back, and I wonder, when I have the brain to wonder, whether this is it, and hope it isn’t, because I’m not finished writing quite yet.
If I am, it isn’t because I quit. I was because I was wrestled to a standstill by Reality, which always wins.
Meanwhile, putting words on page has given me a little much-needed hope again, and getting the news my computer situation might be resolving has given me a goal in a decision I kept going back and forth on (wait – or go ahead on familiar if not completely adequate technology – wait -…).
Thinking outside the box hasn’t worked yet
but I am vastly encouraged by the fact that I figured out how to, initiated it, was fortunate enough to find a listening ear (after several tries), and it may work much better than what I have had (nothing). And in my weakened state, no less!
I’m very proud of myself for trying – hope it works out.
So there – and mysterious. The women who read this blog and are older than 50 and/or have had children may have a clue; the rest of you really shouldn’t want to know. It’s grotty and embarrassing and against all the modesty my middle-class Mexican upbringing instilled deep, courtesy of my beloved Mother.
If I navigate it successfully, you may ask privately, and I’ll name the Beast.
As soon as the fog clears a bit more, and/or the new laptop is here and mastered, I will go doggedly right back to working on the publishing of NETHERWORLD, instead of just going to the file, re-reading the end, and crying into my beer because I love it so much.
I’m just waiting for two good friends to let me know if they liked it, too, to feel a whole lot better.
And if you like to be in at that stage, my contact information is in the About. I could use a few more readers/reviewers who are familiar with PURGATORY, and need to keep going.