Want to do things & my body says "NO, you are not."
Err, grumble.
Want to do things & my body says "NO, you are not."
Specifically:
make progress on hobby projects
and especially for the last several day, drawing some ideas for my sci-fi writing
but no,
my hands already are stiff, puffy, hurting, as their baseline condition
from effects of several neurological, endocrine, mitochondrial, musculoskeletal, autoimmune, problems.
that there isn't actually much that can be done about.
Discouraging and even a bit depressing that doing formerly fun and fulfilling things now causes extra pain on top of baseline pain.
(which even doing this and telling about it also causes)
Sure, could take painkiller and theoretically do the drawing, but the damage will still be there, it just will be blocked from registering in my consciousness.
Is that a smart thing to do?
(and then there's that my consciousness will be muddied by the side effects of the painkiller)
Dad has had many of same things and similar since early 1980s.
(mine developed a bit over 20 years later, when I was about same age he was when they hit him)
(similar situation with his 16 years younger than him little sister)
All the Navy and later civilian doctors have been able to do for him for and after about 40 years
is have him on about 2 dozen medications about 1/3 of which are to combat side effects of the other 2/3
I'm not sure that actually fits the definition of health care.
I'm not willing to do that to my body.
Mom was a dietitian, so, yes, we have tried eating right, which we were already doing to begin with - no discernible effect.
Incurable chronic diseases suck,
they massively
SUCK.
And I feel stuck.
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
Can relate to the title of this thread , and necessity of the occasional painkiller to get by . Sometimes more often than not . Weather has not been conducive to ease of living in ones body especially if there are chronic conditions involved . It can be quite upsetting , even discouraging at times . Sorry your having these issues .
_________________
Diagnosed hfa
Loves velcro,
Yes, it does suck.
You have an active, creative mind—but you’re stymied by your conditions.
I’m not creative in the sense of you being creative—and all I have is arthritis in the knees and (asymptomatic) prostate cancer.
In a way, I wish you can pass some of your stuff onto me, and maybe I can absorb it, and maybe you won’t feel as bad.
Hugs kites. There really is little you can do apart from allow yourself the rest that you need, and achieve on the days that do allow you to. When the body is fighting to function on a level that comes easy to others, all we can do is listen to the warning. If we don’t we suffer furthermore and for longer.
Make the most of those days that are “doable”, where we have increased energy levels. Your life isn’t “less”, as you can make the things you achieve, count “more” when you achieve them. It’s about altering expectations and recognising what’s important. X
Truth, and thanks.
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
That is so very, very, kind, thanks.
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
Truth, and demonstrated enough times I no longer fight the warning.
(at least not much)
But I don't want my expectations altered, I want them fulfilled!
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
Anyway, at least there is a pleasant view from bed, which is where I'm reclining today on account of the ME/CFS doing its flare thing.
And I know that itself is negatively affecting my frustration and disappointment levels.
The kitty in the window with his butt in the glorious sunshine would be Grumman, the eldest of the pair.
He is literally rescued near-roadkill & has his own limitations and discomfort to deal with.
Georgie has been in bed with me.
Grumman is 12, Georgie is 11.
Yes, that is a bunch of done and 'somewhat done' large scale trains on the shelves.
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
And as if on cue, an oh so relatable Tumblr post!
https://fatigued-fate.tumblr.com/post/6 ... a-lot-like
#hey can you tell I’m in the middle of a flare up? #don’t mind me... just potentially losing the ability to talk and sing #chronic illness #chronically ill #spoonie #disability #chronic fatigue #chronic pain
Hmm, also quite interesting, https://autistics-speak.tumblr.com/post ... 6858974208
bihet-dragonize
Avatar
dissociacrip
PSA: if you have autism, adhd, or another neurodevelopmental condition...
...and you also experience so-far unexplained chronic fatigue and/or chronic muscle pain or other related physical problems such as:
- poor endurance
- feeling as if you're "weighed down" when standing in place without doing it for long or being particular tired
- are hypermobile/have chronic joint pain/joint weirdness
- were slow to meet developmental milestones in childhood (if some or all of them were even met)
- have any difficulties with fine or gross motor skills
- have any difficulties with speech in terms of moving the required muscles
- have any difficulties maintaining balance
- you normally have a slumped posture
- you feel the need to lean on some kind of support a lot when sitting, standing, or walking
look into hypotonia.
hypotonia refers to the state of having low muscle tone, which means our muscles are not contracted enough / do not contract as quickly as they should. healthy muscles are partially contracted even when in a resting state to quickly respond to stimuli (e.g. reflexes). muscle tone is also important for things like posture. it's not the same thing as having weak muscles although weak muscles can sometimes accompany it.
it's not really a diagnosis so much as a symptom or sign of an underlying problem, and if the problem isn't curable then there's no way to "fix" it, but it can be managed if you accommodate yourself and work on strengthening your muscles (for those who are able to). use mobility aids like canes and stuff if you think it would help you. if you have a doctor and feel safe doing so, bring it up to them and see what they can do for you. physical therapy can help you come up with methods of managing the condition as well.
now, i can't find clear info on whether autism or adhd can actually "cause" hypotonia or how they would theoretically do so, but many places have at least mentioned an association or correlation between these conditions and hypotonia. this is most likely related to how hypotonia is neurological in nature and neurodevelopmental conditions like autism and adhd affect the development of the central nervous system. neurodevelopmental disorders known to be a cause hypotonia include (but aren't limited to) down syndrome, fragile-X syndrome, and cerebral palsy.
i'm sharing this info because i'm a person with autism/adhd who was neglected and abused into thinking physical issues i'd had since early childhood were due to lack or exercise and a poor diet (read: personal failing) and i was just a lazy or weak able-bodied person, and i wanna bring awareness to help others in the same situation so they can hopefully get their needs met and pain managed much sooner than otherwise!
reblogs to spread the word are much appreciated
Source: dissociacrip
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
And in other news,
Q:Is it good or bad that my 2 cats aren't that talented in that manner?
A: Yes, it is.
https://the-adventures-of-dave.tumblr.c ... 8943987712
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
2 questions come to mind, seriously.
Are you taking ibuprofen for the pain?
Are you wanting more emotional support type of response or scientific health and science type info that may alleviate some symptoms?
_________________
Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently.
Lyme disease also has those same symptoms, CFS , FMS , ME , kinda hyper inflammatory types of stuff ,I
Am dealing with those also and some physical disabilities . You get all the wonderful side effects that come with those, besides dealing with autism, the depression is magnified at times . Am jeolous you are able to care for your cats , as those are quite a emotional support . Am having bunches of days where even caring for myself becomes
Impossible . But am muddling through , can use some very strong allergy meds , and coffee to make it through more difficult days ..but pay for it later . Am glad to see your able to get a chance to vent here.
By the way you cat looked very content in his spot in the window frame. And your projects on the shelves ?
Hang in there as best as you can. ![]()
_________________
Diagnosed hfa
Loves velcro,
Am dealing with those also and some physical disabilities . You get all the wonderful side effects that come with those, besides dealing with autism, the depression is magnified at times . Am jeolous you are able to care for your cats , as those are quite a emotional support . Am having bunches of days where even caring for myself becomes
Impossible . But am muddling through , can use some very strong allergy meds , and coffee to make it through more difficult days ..but pay for it later . Am glad to see your able to get a chance to vent here.
By the way you cat looked very content in his spot in the window frame. And your projects on the shelves ?
Hang in there as best as you can.
In addition to those, some symptoms can also be a side effect of taking ibuprofen or another NSAID for pain, may just be time to switch to Tylenol or something else. Is why I asked above you if he was taking ibuprofen for pain.
_________________
Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently.
Side effects?
Advil also known as ibuprofen and other NSAID drugs have a side effect of edema. A primary issue with edema is swelling, mostly in legs and feet but can cause swelling elsewhere. Edema can lead to problems such as hyponatremia to cause problems such as fatigue.
_________________
Here's to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently.
I'll answer that this way;
Ibuprofen has twice landed me in the ER
next time it will likely be the morgue.
(same for several other medications, both Rx and over the counter)
Another roundabout answer, composed of highlights;
> I worked at staying up on the publicly available health and science info from the time Dad was diagnosed by high-powered military doctors in northern Virginia around 1983 until about a year before covid-19 hit.
> There up to that time had been little movement on ME/CFS and fibromyalgia because of the dominance of health care providers who do not "believe" they are real physical diseases even though there is plenty of hard laboratory observation of how they do things like mess with amino acids in your immune system, fMRI showing how they affect brain, and the like.
(If I was healthier that topic would lead to me issuing an hour long editorial and report, but fortunately you will be spared) (but I will provide this from 2016, about a situation which sadly still holds true to a large degree, https://senseaboutscienceusa.org/pace-r ... -medicine/ )
(and here's a 2018 thing on brain scans, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6051500/ )
> About every 5 to 8 years since initially tested and diagnosed in early 1990s whatever doctor I have wherever I'm living that year has me retested for neuropathy and the results have pretty much consistently contradicted the previous test's results, the most recent being spring 2019 and coming up a no.
> I was on Facebook from 2009 to 2015 and active in several support groups and got given a reputation as the 'go to' person for finding science and academic info to answer questions in the groups. I haven't been on FB since 2015 except briefly in 2017.
> I have now fallen in to a bit of a bad attitude where health science, and especially health scientists, no longer impress me and health care providers are in line right behind them.
> And now, to answer a bit more clearly, what I mostly want is to be heard.
There honestly is not that much that medicine can currently actually do about the combined effects and interactions of what is going on with my body.
_________________
"There are a thousand things that can happen when you go light a rocket engine, and only one of them is good."
Tom Mueller of SpaceX, in Air and Space, Jan. 2011
