#i don’t have a CFS diagnosis

[carpathxanridge]

won’t comment this on the same post because it’s probably not what they want to hear rn but i know that some people HAVE “cured” their CFS, or rather have been able to manage it and return to moderate activity levels, by essentially “gradually building stamina.” but the approach and mentality behind the pacing approach is SOOO different than what the average person assumes “gradually building stamina” must look like, and always errs on the side of MINIMUM activity because of the seriousness of PEM. like it sucks to have the 3 mile walks you were once accustomed to suddenly make you bedridden the next day. that’s why pacing would mean, for a very long period of time, going on… a five minute walk, if that’s where you’re at. a one minute walk around your living space a few times a day. or ten seconds of standing, if completely bedridden. but if you’re not bedridden and are doing things around the house, even just if sitting up to work at a computer, pacing ALSO means laying down flat and having a full body rest multiple times a day, scheduled throughout the day. it means not just allowing rest, but ENFORCING it. the barrier to people with CFS slowly building their stamina back up is usually this idea that part of that endeavor involves willpower, that if you can just will it hard enough, try harder, the CFS will go away. how could you possibly need MORE rest when you’re doing nothihg? when this mentality is the opposite of what CFS needs. people who’ve successfully gotten their old lives “back” after CFS have done it by respecting PEM, erring on the side of caution, being so gentle with themselves and careful not to send themselves into a flare-up.

[temilyrights]

.

live laugh love the possibility of an me/cfs and fibromyalgia dignosis at 25

[exhaustedbunnytm]

I thought this doctor would be different…but no…

“have you tried anti-depressants?” - yes all of them. I have treatment resistant depression I have literally done almost fucking everything.

“are you sure you eat healthy? You don’t have too much sugar?” - no processed foods, i occasionally allow myself to indulge, i eat a diet planned by a nutritionist.

“are you sure it is not psychosomatic?” - my mental health is struggling because my body is declining and I am fucking exhausted all the time. I am struggling mentally because of my physical illness.

“have you tried a multi-vitamin?” - yes, and they make me feel like shit more. I still take other vitamins.

“Im not referring you, just so you can get opioids.” - i just want to see a rheumatologist and a pain and spine specialist…for my fucking pain, that I am in every day. I want a diagnosis and no pain.

*googles cfs and reads from the same document I have read* “have you tried meditation or yoga?” - go fuck yourself, you list yourself as a chronic illness specialist and you’re googling this shit. Meditation and yoga have never and will never work for me, I have tried so many times.

“you are completely healthy, you’ve been seen by everyone” - no I have not seen everyone, i need to see a rheumatologist, and a pain and spine specialist, and someone that will actually help me try to have a quality of life.

I have been striped of everything I enjoy, i am a shell of what I once was because my hands are always in pain, my joints are swollen. I am a fucking artist who hasn’t made art in 8 months because my hands hurt so much I can’t make work. I went from being in 8+ shows a year to not even being able to make work. This has been devastating to me, I have never not been able to make art in some form. I have lost a core part of me that I thought I would never lose.

Just because I look healthy on paper does not mean I am. It does not mean it is psychosomatic, my pain is real. This is real. It is not in my head…

[timemachineyeah]

when I first got sick, first had to grapple with the ongoing state of my condition and that I wasn’t getting better, one of the things I had to adjust was how I planned to feel

like, at first when I became ill when I planned for my future I planned for one where I recovered - got some diagnosis or just slowly built up stamina - and redirected back to the main plan, the one I’d already been working on

and it took a long time

a long time

to learn how to plan for feeling bad

both in terms of the actual logistics - how much I can schedule for myself, how much energy is reasonable to give to what tasks, what I have to energy to eat, how far I can walk, what household tasks can be accomplished, how much of a break I will need afterwards - and in terms of just emotional and intellectual acceptance that this could even be okay, that I could be okay like this

it is still the hardest part, the part where I plan my future around my limits. I like dreaming big, even if it’s sometimes bad for me (like right now, in this moment, where I’m scared it’ll be bad for me), and picking a lofty goal and grinding. Shoot for the moon, if you miss etc. I went to film school, and Hollywood is all about the hustle and grind. but I couldn’t hustle and grind anymore. I can’t even pretend that if I work myself to the bone it could be enough, because my working myself to the bone is a working entertainment professional’s mental health day and I know because I clung to that industry as long as I could and it’s still where a lot of my heart lies and there’s no universe where I can compete in it. sometimes I can’t even put on a bra.

these days my lofty goals are things like “if I just keep chipping at it maybe one day I’ll finish a web novel and a few people will read it” and that’s not a bad goal but I don’t hold any illusions that it’s a viable income plan.

anyway, it turns out life is okay when you plan for what you’re capable of rather that what you wish you were. it took me a long time, and it’s not perfect, and I’m very dependent upon family and it only works because they are not awful about it (there was a time they would have been, but they got better), but I manage to do a lot more now by planning my life around what I am able to do rather than what I hope to be able to do (or what I am forced to do by unaccommodating circumstances).

it’s nice day to day, even if I still get more behind on cleaning than I would like to and don’t get as much done, to have things arranged so that I don’t exhaust myself and I can quickly access what I need or whatever I would like to do

it has been really helpful to make choices based on the presumption that this will be ongoing, since it has been for ten years. it has been helpful to presume that it’s a diagnosis of exclusion, like ME/CFS, and that I might never get more concrete explanation than that let alone a way to feel better, and to come to terms with that

so I’m having a really hard time emotionally processing that I might have a diagnosis.

like, of the “according to your labs” kind

the kind that comes with drugs and treatment plans

but only might have a diagnosis only might it’s just one test it’s just one test. I will do more tests tomorrow. and also who knows how long it’ll take to actually get an appointment with the referral so

only might only maybe

[so-called-failed-academic]

Bad me/cfs diagnosis situation??? Help???

So I had my specialist appointment today

How it went:

- asked some basic questions about my symptoms, I relayed them and so on.

- discussed medication, what I’m on etc.

- DUE TO THAT, fucking went on a tangent for ages about my testosterone. (It was previously way too high causing my ck to be high af but we got that down before referring me to the specialist just in case it was that, when we knew it wasn’t but just so they wouldn’t excuse it etc.) and wouldn’t stop talking about it

- turned around and went yes you have the symptoms for me/cfs I’ll write up a diagnosis and refer you straight to cbt. Bye. (Correction, occupational therapy oops I wrote it wrong)

What was not done:

- asked at all about a care plan

- didn’t even once try to explain what cfs/me is (I know but that’s not the fucking point)

- when I went I get dizzy doing exercises (like lifting any weights, walking is fine for the most part I think I cannot remember I use a wheelchair lol) he went “well yeah, your body isn’t used to moving”

- didn’t bring up anything on the form that I was made to fill out before

I don’t know. I just left the (mind you 25 minutes) appointment feeling so…I don’t know unheard??? I’m not sure how to explain it.

It just all seemed to be for like half of the appointment about my testosterone, and him explaining what my testosterone levels will do rather than why I was actually there.

Was this a bad appointment/bad treatment due to that or am I just over thinking it???

[transmutationisms]

i have serious misgivings about the use of the term ‘anti-intellectualism’ in general (where’s the class analysis, historical context, willingness to challenge the hegemony of the academe and publishing industry, &c) but specifically it is so disingenuous to try to use it as some kind of moral diagnosis for what you see as a crisis of ‘critical reading skills’ (cf. media literacy, reading comprehension, intellectual curiosity, &c &c &c). you seriously can’t think of any reason why a person might dislike reading or not be able to do it? and like, no i don’t think you get a pass on presenting this as a moral failing just because you gesture toward it being a general societal moral failing

[obliqueblade]

Update- Health Concerns/Inspo/ rambling a bit

“So Oblique where have you been?” 

That is a great question reader. The truth is complicated… and rather long. 

Not to be like “ao3 writer moment” but… 

I have cancer. Had it for a while actually. I got diagnosed right at 20, but I had symptoms for a while before that. We had thought it was just my asthma acting up, but nope. 

I have lung cancer. Wooo. 

Funnily enough, about a month or so later, Technoblade released his announcement video. 

It was strange. Knowing that while I was going through treatment, someone I looked up to across the country was doing something similar. I remember watching that video hooked up to my oxygen machine, and feeling a pit in my stomach when he had mentioned being able to see where it was. While I don’t have Sarcoma, most cancer patients, especially those in the ward knew what that meant. 

I made a joke though, that none of my doctors, or friends really appreciated. Statistically, I would die before he did, so I at least wouldn’t have to live in a world without him. 

… clearly, this did not go the way I had hoped. 

Off and on for that year, I was in and out of the hospital in Clevland, Ohio. Now this is not where I live normally, but it was close to my grandparents. I also found out how much I hated snow. Moreso, when your lungs also hate it and you at the same time. 

“Oh, Oblique, just how common is lung cancer in your early 20s?” 

Why dear reader another GREAT question! The answer is- it’s not. Or the early signs are easy to miss. I was one of the youngest patients at CC frequently, and one of the only ones with lung cancer during my stay. We were able to catch it so quickly because my step moms brother had CF, so my mom spent a lot of time in hospitals around people who couldn’t breathe. After the first few times, I couldn’t catch my breath, no matter what I did she wanted me to go and get tested to find out what it was since it was clearly worse than just asthma. We knew it wasn’t CF, because they would’ve found that earlier. Ruled out pneumonia pretty quickly too as it was the middle of summer. My FP happened to think to test cancer, just in case. My Dad and I had laughed, it was such a long shot it was more likely I was just having pretty frequent panic attacks. Now I knew deep down it wasn’t panic attacks and my mom did too, but the C-word was terrifying. 

And then we got the tests back. I knew as soon as he walked in, hell I knew when they did the tests, and yes there are multiple. 

I asked my mom to leave the room, My Dad hadn’t been able to come in that day with us, and I needed to talk to him about how long he thought I had. 

He didn’t reply for a while, and I’ll never forget the look on his face. 

At the time of my diagnosis, I was 19. Statistically, the chance of living to see my 24th birthday was almost impossible. 

Doc pretty much told me that IF I could survive the next 7-12 months without the cancer spreading to my other organs my chances were pretty good. I’d later find out that the chances of it spreading were so high, and if it ever does the chances that I make it almost none. However, even once I passed every year after would be considered a miracle if I got past five. 

He went into the next room and talked to my mom for a while, while I tried to wrap my head around everything. Just how quickly my life had changed. How fast it was all going to happen. What finally broke me, was my youngest sister texting me from one of her middle school classes asking me how it was going. Realizing I’d never get to see her graduate, take her on girls' days, help her through heartbreak, watch her get married. 

At that moment it felt like the cancer had already killed me. It had stolen not only my life but my place in the lives of my family. Doc and Mom came back in at some point during my breakdown and sat with me. 

We didn’t leave that office for a while. When we did, I told my mom that I wanted to be the one to tell my Dad and sister before we talked about where we were going to go. 

So that night after dinner, we sat at the kitchen table, and I simply said 

“This air quality seems to be so shitty, that my lungs have decided to refuse work,” 

And my mother broke into tears, and my dad and sister stared at me like I was crazy. Which I kind of felt I deserved to be. Once we had cleared up the confusion, my dad asked me the same question I had asked the doctor. 

I told him that realistically he was going to have to rely on either my older or younger sister to wipe his ass when he couldn’t do it anymore. I was trying really hard to make light of the situation because I didn’t want everyone to be sad before I died. There would be plenty of time for it afterward anyway. 

Maybe that’s another thing I recognized from Techno’s initial video. Trying so hard to make sure that no one was worried despite knowing what was going to happen. And even though I think deep down a lot of us at least feared, the concept was so ridiculous and insane. How could someone like him just… 

On the day of the announcement, I saw Dreams tweet before the YouTube notification came through. 

I sat in my hospital bed playing Minecraft on the PC I had finally saved up enough to get, and I was on the phone with my best friend back in my home state. All I can remember is saying “Please. Please don’t let it be who I think it is. Please don’t let it be.” The last thing I remember hearing was my friend say “Oh ____ I am so sorry.” 

I hung up the phone and just sobbed. I ripped out my IV and heart monitor culled into a ball on the floor and just lost it. It didn’t take long before my nightly nurse ran into the room and they eventually had to sedate me. 

I woke up a few hours later, and for a moment I thought I had dreamed it. Yet I saw my mom in my room and I knew that I hadn’t. She had started working remotely due to COVID-19 and her job was letting her continue to remote in so she could come to Ohio with me and stay between the hospital and my grandparent's house. My dad would drive, and while Ohio was closer than some of the other hospitals this is still an 8+ hour drive every other week with my sister and stay with me. 

I had actually been doing pretty well at this point. Due to my age, and the fact my cancer had not spread yet, I was a really good candidate for surgery. However, there are underlying health conditions and risks that have to be monitored and dealt with before they can do the surgery. They had to give me enough time between treatments so I still had the strength to survive the surgery. 

When the video was released, I finished up another round of medications, this time ones that showed promising effects and weren’t damaging to my strength so I would survive the surgery. 

After the video came out, my mental health dipped hard, and fast, and my physical health soon followed. Then one of my best friends as the center passed. She was three months younger than me. She had leukemia, and the doctors had been amazed she had lived as long as she had since she had it since she was a kid. They thought she was in remission in her teens, but she relapsed pretty hard right before she turned 19. Halfway through my stay there, she had taken a dip, and her health hadn’t been able to recover. 

At that moment I wanted to die. I couldn’t see a point in living, of fighting, when the time I bought through these treatments maybe would last a few years. My doctors essentially had to rework my treatment plan and appeal to my parents that if they wanted me to live, they needed to have me fight for it. 

So much as those days where my family would come in and beg me to try and fight I just didn’t have it in me. I couldn’t see a life for myself anymore. Now some people may look at that and think it's dumb, like “Oh some guy you never even met, someone who didn’t even know you existed, died and now you’ve decided to just die?” 

Well first off rude. Secondly, I was already suicidal, and you’ll find it’s extremely common for patients with life-threatening diseases to need therapists constantly because they have extreme suicidal tendencies. Also, I want to state that yes I am referencing Techno a lot in this, but know that I am remarking about his passing and how it affected me, I am not doing so as a way to blame or hate him. Obviously, I cannot claim to know what or how he was feeling in those last few months, but I do know that we don’t get a choice when cancer kills us. 

It isn’t up to us. 

Hell, maybe no one is even reading this, maybe I dyed typing it up, or before I posted it. The point is I don’t want some moron to read this and think “Wow attacking a cancer patient, Oblique whatever is next?” 

Dear lord this thing is four pages now, alright to quickly wrap up on why and how I’m back. 

Just before all this went down, I had gotten into Hermitcraft. Now back when I was growing up and living under different circumstances, I wasn’t allowed internet access, so I missed out on a lot in the mid-2010s, one of which being Hermitcraft and well Minecraft as a whole. 

Anyway, I found specifically GoodtimeswithScar and Grian. 

Now, I do watch other Hermits, but at this time I watched these two the most. I never used Twitch before, and while I still don’t really like the platform I loved watching Scar stream. 

Scar, actually, was the reason I got determined to at least try and fight this damn cancer. 

See, before this, I didn’t know about Scar’s illness. I didn’t know he was in a wheelchair and I didn’t know he was on oxygen tanks either. So the first stream I got to watch, lying in my hospital bed, hooked up to about a million blinking machines, I opened it to see someone else wearing oxygen tubes. Someone who was also hooked up to a million different things. Yet, Scar could create some of the most beautiful things I had gotten to see while stuck in that room. It was like he weaved pure magic through the screen. 

So, I came to the conclusion that what the hell. If I died so would my memories. The things I’ve seen and people I’ve met, all of it would go with me. And if there’s one thing I learned from Techno, is that “... the Sun Kast fallacy wouldn’t allow it,”. 

So, we restarted my treatment plan. Eventually, we did the surgery and after making sure I was stabilized and showed no signs of infection, or that the cancer was making a comeback right away they allowed me to be transferred home. Right in time for that good ol’ Southern heat. 

Now, I still have to regularly go to the hospital, as well as wear my lovely little oxygen tubes around, and take PLENTY of drugs (OMG so many cotton mouth is REAL), but not to jinx anything I’ve been doing fairly well these past few weeks. 

Of course, this can change in an instant, and I have to be extremely careful, especially due to Covid (Seriously guys if someone coughs on me I might as well get into the coffin now.) 

As for why I decided to write this fic? Well, in a way the Hermits helped me live. Helped my parents not have to bury one of their kids. Helped me see my sister start high school. Helped me reach my 21st birthday. 

19-21. 

Three years down. 

Realistically, I know there’s going to be a day I get the results that not only is the cancer back, but that it has spread. I know this. And I also know that when that time comes I will have to accept that and move forward as I can. I may never be as great as Alex, and I don’t want to be, but I want to be like him in that I will accept and try to easily go when it’s my time, knowing that I did all that I could. 

In the meantime, I might as well leave something for the small part of the world that I can. 

If and when my updates stop, I’ll leave a message for my friend on how to log into my Tumblr so she can at least give you guys some closure. 

Take care, and I will see you when I see you, Readers! 

Update:

So originally, this was going to be posted on the 13th– clearly, that didn’t happen. I had a minor health setback. Bacteria truly is my greatest enemy. I got sent back to the hospital and then saw my specialist on the 13th and a whole new wave of antibiotics. I’m still in the hospital being monitored, which is kinda like every few hours someone comes in and pokes me so I can never sleep. 

Which ya know is fun. 

So I got my roommates to bring my laptop under the guise of doing school work but in reality, I just wanted better access to edit because that’s hard to do on my phone. 

Anyway, I’ll keep you guys posted. Chapter 2 should be posted within the next week or so health providing. Knock on wood.

[phleb0tomist]

I was wondering what the diagnosis process looked like for you in regards to me/cfs? What tests were done? (Only asking because I suspect I may have it, however my general doctor got my blood drawn (even though there are no known tests to diagnose cfs/me), and tests results came back normal. They blamed it on my medications, but I've been experiencing the symptoms way before I took the medications.)

Now I'm having to call and ask them what I'm supposed to do, since I'm struggling.

Have you struggled getting an evaluation?

How did you make others believe and advocate for you?

Not forced to answer at all btw!

hello there. i’m sorry you’ve been struggling and that your healthcare has been lacklustre! this post is going to be long so strap in <3

the diagnosis process varies from doctor to doctor. tbh many doctors are reluctant to consider ME even if it’s a severe case or a very classic case because they generally aren’t taught how to recognise it. it can be helpful to send your doctor links to official resources so they have a framework for helping you. if i were you, I’d look up the official guidelines for suspecting ME/CFS in your country and either send a link to your doctor or print them out. most doctors i meet will admit to my face that they haven’t read the guidelines for ME, so basically they’re not informed on suspecting, diagnosing, or treating it. in the UK where I live, the NICE guidelines explain the steps that should be taken if ME is suspected.

ME/CFS is a diagnosis of exclusion, so basically they do standard tests (like blood tests) first to make sure your symptoms aren’t caused by any other condition. once they’ve ruled out other causes, they see if you meet the ME/CFS criteria they use in your area. (in theory, diagnosis should take 3-6 months, but a lot of docs take a ‘wait and see’ approach instead, which can sometimes last years. personally i don’t think a ‘wait and see’ approach is appropriate, especially if you’re young. you may have to be assertive and ask multiple times to be evaluated. bear in mind it’s the system failing, not you.) the way they decide if you meet the criteria is by discussing your symptom history, which might take a few appointments. the best way to advocate for yourself is to bring another person to back you up (sorry to say this but statistically, it helps if it’s a male family member), to have a list of your symptoms and a timeline written down, and to be clear about the practical ways that your symptoms impact your life. i.e. “it takes me (x amount of time) to recover from going on a short walk. this symptom gets worse (x amount of time) after i do a particular activity and lasts (x days). i can no longer do x activity at all because of my symptoms. I’ve tried x y and z and it hasn’t improved my symptoms. I want to get my quality of life back.”

I don’t remember my diagnosis process very well. i had major symptoms for several years before ME was even considered, i was repeatedly brushed off and told my symptoms were from my autism even though that doesn’t add up. interestingly i was given treatments before I had a diagnosis. then i had a ‘working diagnosis’ of ME in my teens, which is where they think you probably have something but they don’t put it in your file till they’re sure. i’ve had a proper diagnosis on my file for years now, but i don’t know when it got there or who put it there. (??) the diagnosis process can be kinda weird. mine took forever but i know other people who were diagnosed quickly and efficiently, so it’s not impossible.

personally i had a lot of random tests, blood tests to CT scans to x rays, basically any test that was related to my symptoms (like a head MRI for headaches). i do actually have other conditions which show up on tests (like scoliosis), but since scoliosis cannot possibly be causing my specific pattern of exertion-related symptoms, i still got diagnosed with ME. having another condition or having medication side effects does not mean you can’t also have ME! especially if your symptoms started before you took the meds, like you said.

i feel like i’ve rambled enough. i hope this was helpful. if you have any more questions please send another ask and I’ll try my best to answer!

[lesbianboyfriend]

it’s like i know i have chronic fatigue but i don’t know if i technically have cfs/me and everyone is always telling me to exercise and i don’t know if that will be actually helpful for me or deeply harmful and i feel like there are still so many unknowns about my health that once i got my fibro diagnosis my parents and doctors no longer care like they’re like okay that’s your one problem and so i always feel so lost and overwhelmed and no one ever understands and i don’t know how to get any help. okay

[pansyboybloom]

my two cents but as someone who cfs/fibro I don’t mind. I definitely reblogged posts and made jokes like that years before getting a diagnosis. heck, my url has a joke about being tired in it. I think more people than we realise have fatigue disorders and I think people who are tired because they’re burned out by living in a capitalist hellscape/watching atrocities unfold/dealing with personal issues or traumas also deserve to have gallows humour about it.

Thank you for your two cents! When you put it that way I absolutely agree. W my schizoaffective I get very angry very easily and it was clouding up my chance at seeing some of the things you mentioned. Again, thanks!!

[starsandhedgehogs]

How did you get diagnosed with Craniocervical Instability?

I’m pretty sure I have it (I have EDS and my vertebrae already are subluxing, then I’ve started with the skull and a dizzying array accompanying symptoms roughly from tingling, numbness -in forearms, down spine and into head, little and ring fingers and knees- and neck and back of head pain to inability to turn my head, trigeminal nerve irritation, crackling in right ear, abnormal gait and feeling of the head not being stable on the spine) and it has become significantly worse this past week due to my monthly progesterone rise (I’m allergic to my own progesterone rises after a significant change in bleeding that has been ignored by doctors - rash, breathing difficulties, feeling like I’ve overdosed on meds) and the EDS has been reacting violently to it this past year (new and rare subluxes and dislocations in weird joints that only happen at this time of the month), but A+E isnt great when you have ME/cfs and just going will put me in bed for a week.

The last time I went to A&E, they misdiagnosed Endometriosis as ‘non-infective gastroenteritis every month’ (which is weirdly the infection that caused my ME) despite me telling them as soon as I showed up that it was the Endometriosis and my bowel being pretty much dead again and no amount of anti-emetics would work (they hated me being right about that).

Basically, it’s a huge waste of time but I don’t know how to explain it to my doctor in a way that is dumb enough for them to not get offended by me actually daring to try and do some helpful research before my appointment (but this is looked at as, I quote, ‘strange family health beliefs’), which I have never been wrong about in over 20 years! Anyway - if I act logical and sensible, they’ll think I’m ‘an extremely anxious young woman’ so it’ll get me nowhere.

I am in a lot of pain with the back of my head and neck but have no access to appropriate pain relief because I have been told ‘all painkillers are placebos and the only form of pain relief that works is a talking therapy’ and have been flatly refused painkillers when I repeatedly asked again. The only thing that seems to ease the symptoms is sticking a toilet roll between my chin and collar bone, which eases all this pressure but the doctors will think that’s nuts! Any advice on how to approach a diagnosis or even something that might help with the symptoms when your doctors are moronic arseholes would be so helpful.

[transfaguette]

do you have any resource recommendations for ME/CFS? i saw posts saying you have it too and we have been struggling with it for a long time and one time when we tried to get help/resources in a discord server about it we found on disboard we were kinda chased out cuz we have other stigmatized disorders (cluster b)

(its fine if you wanna delete this ask or just answer privately)

yeah no problem! r/cfs is generally where i’ve learned a lot about the diagnosis and PEM and pacing, their FAQ/Wiki has loads of resources. i don’t recommend spending too much time there cuz reddit has serious ableism problems when it comes to cluster b disorders as well :(. but the pinned post has sooo much info

[deadlifts-and-deadlines]

Today is day two of the ice storm.

The first picture is how thick the ice was when I scraped off my car around 1:30pm yesterday. I haven’t been outside yet today, but it’s been raining most of the night and it has been hovering around freezing so it might not be too frozen out, but it is still slick. Picture two is Ender’s decorated cookies; he went over to Mimi and grandpas for a cousin cookie party yesterday afternoon - perks of living in the same neighborhood as our family. One of my SIL’s makes a massive batch of sugar cookies every Christmas and just kind of doles them out over the next few months for the little kids to play with and decorate. They aren’t edible, but they love to decorate and it keeps them busy so I approve, lol.

I am tired AF and feel like I’m running on fumes. No appetite. No solid poops. The stomach and chest pain has subsided significantly though, and I actually felt pretty good once I got up and going yesterday. It sounds fake, but working out and getting moving in the early AM helps me so much. I can’t really do CF of anything heavy or cardio intensive during these times, but light lifting and bodybuilding style workouts seem to energize me. So I usually work out, shower, try and actually get dressed, clean the house up a little, eat something small, and then I can usually trick myself into feeling well enough to keep going, or I go down, but at least then I accomplished something for the day.

I take Stelara on Saturday, but if I have another night like I did on Sunday night I will probably take it sooner. I don’t think a couple days will make a huge difference in the scheme of things but it does mean the difference between me getting really sick for a few days. I refuse to go to the ER within the week of an injection, I’m not paying for that even though it’s cheaper for my insurance to do it this way then just… give me the dosing I need. I would legit just take the shot early. I’m a little nervous though because my prescription for the next 8 weeks hasn’t been released yet… and I have still heard nothing from the GI or insurance so I have no idea what’s going on. Usually I have the next injection within a couple weeks of having to take the first. So I’m a little nervous I’m getting taken off of it. I guess I should call and find out; I’m so sick of spending time on the phone dealing with this shit - honestly it is a full time job on top of being chronically sick - another full time job!

I’m going to figure this out though. We’re getting closer, but I truly never thought it would be this long and complicated of a process for me. I don’t know why. I think I just thought that as soon as we got a diagnosis we’d know what to do. Now it feels like the more we try the more we find out is wrong with me 🤣

[so-called-failed-academic]

Hey

People with CFS/ME genuine question (as someone who’s looking at a diagnosis with his doctor but also sometimes questions it)

Do you sometimes get bursts of energy when you’re having a good time? Like not so much energy per say but you go out and then you keep going and don’t stop cause you’re having a good time and you don’t feel the effects until you go back to your room and you’re alone (I normally get a really big headache that’s my first warning)

This doesn’t happen often and I am often too fatigued to do many things but I’m wondering if it’s CFS/ME or if I just have fibro (what I’m diagnosed with but my fatigue effects me a shit tonne)

I keep wondering if the fatigue is cfs or due to my mental health but I know mental strain can cause flares too so it’s like what is even going on with me ya know?

[prettysureitsprettycure]

Status of the Podcast

Hey y’all. @timemachineyeah here to talk about the podcast.

There are still many unedited episodes. We managed to watch through to around the first batch of Splash Star and I still have all those recordings from years ago sitting and waiting to be edited.

As many of you know, but most probably don’t, I have CFS/ME (or some other chronic illness that mimics it - I still hold out vain hope for a more treatable diagnosis). This often got in the way of my ability to record, as I get sick more often, get migraines, and can’t always regulate my energy.

Then many things happened in my personal life and though I had intended to get back to the podcast, as time went on it fell further and further to the wayside. And I got to know my illness better, it became clear that the fewer scheduled commitments I had, the easier it was to maintain health without crashing. At this point I make as few regularly scheduled commitments as I can, and it sucks, but it’s also way better for my ability to do things.

It’s worth admitting at this point the podcast is not coming back.

I still do hold out hope that one day I can at least edit and release the episodes we already recorded (or pay someone else to in an imagined future where I have money). There’s something like 30 unreleased episodes and we had so much fun recording them. I’m sure some PreCure fans would have fun listening to them. But for now the podcast remains on indefinite hiatus, and should it return it will never cover all of Pretty Cure, instead stopping suddenly.

Though if we are lucky enough to be able to edit and release the episodes, maybe we can get back together to record some kind of retrospective or some other send off. These are daydreams right now, though, as I have no immediate plans that would get the episodes ready for release.

The failure to maintain the podcast lies basically entirely with me, Cure Jessica.

Cure Frank ( @drasnianfrank ) and Cure Jade ( @theneptuneviolin ) were always incredibly patient with me and my many Life Things and remain awesome people and cool friends.

That being said, I still want to watch Pretty Cure, so am taking it up casually as a fan. I’m no longer watching on a schedule, just when I’m in the mood.

I’ll be keeping this blog up and might even post here occasionally. Just wanted to let everyone know belatedly what’s gone on, because while our podcast only ever released a handful of episodes, I know people listened to them and enjoyed them and I’ve always appreciated that. Thank you all for your warm reception and support. The PreCure fandom really seems like a lovely corner of the internet.

Thank you again, and all the best 💗

[devilsflowermantis]

i think i understand finally why i was so sick in 2020. i’ve realized i had POTS/CFS for years before my diagnosis, even before 2020. i have severe sensory problems because i’m autistic, and it puts stress on my nervous system 24/7, which i think has permanently changed my nervous system and how it processes pain and stress. plus a lot of childhood trauma, and i was still processing a traumatic event from a couple years prior (and being autistic, it takes longer for my brain to process that sort of thing). add that to the fact i got covid early on and developed long covid (and started having seizures and delirium, my pots symptoms got much much worse, my digestive system was destroyed (i couldn’t eat bc of how sick it’d make me and lost 30 lbs in under half a year))…. and a family member of mine was dealing with stress from the pandemic as well and became really abusive towards me (it’s all good now though). the amount of stress on my mind and body sent me into a psychosis. my body was in constant fight or flight and i was having 5 severe panic attacks a day. the exhaustion mentally and physically destroyed me emotionally. i’m so glad i’m not there anymore. i still don’t ever feel “normal” but i’m so much better than i was…