Symptoms: chronic fatigue, brain fog, ADHD

①Medicines that worked very well

Medicines that act on noradrenaline All worked well except Atomoxetine Especially Nortriptyline and amoxapine Then Imipramine Then milnacipran

But side effects on my heart made me unable to continue

②Medicines that didn't work Mirtazapine (feeling sleepy even at the lowest dose, general fatigue different from drowsiness, ALT increased 3-4 times) Agomelatine Task processing ability improved, but general fatigue was terrible (a unique sensation similar to Mirtazapine, feeling of strength leaving the body)

③Medicines that worked for ADHD for some reason Clonazepam、Lamotrigine

④Medicines that worked at first but gradually stopped working SNRIs in general (Cymbalta, Desvenlafaxine, milnacipran) )

It worked dramatically for the first two months, but one day I moved too much and crashed, and it stopped working from that day on.

〇Drugs that greatly worsen ADHD

All drugs that increase dopamine

→Even small amounts increase impulsivity, impair judgment, and lead to manic states. Increases stereotyped behavior. I am not usually diagnosed with bipolar disorder. Both bupropion and methylphenidate had the worst effects.

〇My hypothesis

① Do I have a DBH deficiency? Is it difficult for dopamine to be converted to noradrenaline in my case?

② Is it possible that an antidepressant that is not yet widely used or a drug that is not well known might work? (I am particularly interested in 5-HT2C antagonists)

Sometimes unexpected drugs work for me, so if there are any candidates, please let me know.

My life is a mess because of ADHD and chronic fatigue (especially ADHD).

I took my son and dog away for one night at the weekend and we walked almost 10 miles across two days (well, I did, they walked and ran more than that!) so obviously I'm basically jelly today. My friend is in her 70s and when she saw me and how muddled my speech had got, I explained I'd walked five miles two days in a row and it would knock me out for a week. She was surprised, she walks at least that far most days at twice my age!

I'd be more amused if I was less exhausted but it did strike me as mildly entertaining to be out-energied by someone old enough to be my nan.

Cross posting with the EDS sub. My physio and I agreed its time for a rollator for both EDS subluxations and my me/cfs. I need to name her though! (I'm thinking a femme name). For those of you who named your mobility aids, what did you name them? While we're here, if you have a name for my cane that would be great (he/him for the cane, he's going to be a sir _____)

**couldn't find a more suitable flair, but this is a silly post and thought people might have some good ideas. Mods, if I should edit the flair or anything let me know **

After overexertion, especially when overexerted on a day and NOT taking enough rest, I get heavy, crushing fatigue for days to months. I'll feel my lymph nodes and spleen more (splenomegaly, diagnosed, unknown cause), I'll have a lot of cognitive symptoms such as low mood, brain fog, intolerance to stimuli, and so on, I'll have fluid retention, look like hell, muscle aches...

Recently I triggered this again and I'm absolutely wiped now. I'm afraid that I'll be sick like this for weeks on end. (or worse, months)

I have diagnosed hypothyroidism and it's being treated, and has been for about 5 years. However, I wonder if the Hashimotos adequately explains this fatigue. Could this be CFS? With what I see is that it's a diagnosis of exclusion and Hashimotos obviously explains fatigue.

What I also notice, aside from these episodes: I have very low energy in general, even despite carefully making sure I'm in decent shape. (excellent VO2max, which I guess, excludes the possibility of CFS?) I feel like my good cardio fitness is really what keeps me semi-functional, since I started training my wellbeing improved but I feel like it's a sort of ''crutch'', that without this good cardio condition, I'm semi-dead.

It's a bit hard to explain but I think it ''compensates'' for a deep, systemic fatigue. Can you have CFS when you're in good shape fitness-wise and have improved it, but also have episodes of heavy fatigue when slightly going over a certain boundary?

Hi all 👋

I have an appointment to get some blood tests for RA. Are there any specific tests I can ask for regarding CFS? Or any I could ask for to rule out other conditions?

I can't get a referral to the CFS clinic due to the RA, because 'fatigue is a common symptom', but I get severe PEM and have had periods of being bedbound, not being able to eat or sleep, all the usual symptoms, but they still won't help me or give me any advice to deal with it. So I'm not 100% sure what, if anything, I should ask for...it doesn't help that when I try to research for myself I can't concentrate and forget it all almost immediately anyway! 🤦🏻‍♀️

Any advice at all would be very much appreciated 🙏

to take together

I've got severe but I call myself mod-severe because I'm denial and I've been running into an issue. Showering has become even more difficult than it already was. The actual movement of having to shower is not an issue, moving my arms doesn't tire me out the same way moving the rest of my body does. However, being upright is where it gets bad.

Sitting straight up is not really achievable for any extended period of time. I can sit in my bed and on the couch, but only in ways where it might as well be considered lying down. I always need to have my legs up, and I need to have my body leaning on something. Both of those things aren't really compatible with a shower.

I'm just kind of at my wits end and it seems like the shower is exacerbating my symptoms. Cold water doesn't work for me, my temperature sensitivity is pretty bad and a change in temperature like that throws me for a loop. (That's why I posted this here instead of the POTS sub)

TLDR: Showers are difficult, not because of the motion, but because of being upright.

After suffering from fatigue and PEM for probably 8 years I finally talked to a doctor about it. Just to be told that most experts don't actually belive in the diagnosis of ME/CFS. And that those getting the diagnosis often get worse from getting it and staying in bed too much.

He also said that my issues most likely comes from my long time anxiety issues. (He also said that it could be long covid for some patients.)

Is there anything else I can do?

I've always been skeptical about things like that so I'm a little iffy. The person my mum has been looking into is apparently good and she seems optimistic about it.

Is it worth looking into?

Hello Long Hauler fam,

☀️ Here are 3 research findings and a question to consider this week (plus 🐶 pic)

3 IDEAS FROM RESEARCH

I.

An Exeter-based research firm, Attomarker, has developed a finger-prick blood test that could help confirm Long COVID in patients – a potential game-changer for diagnosis and treatment.

🔹 A new way to diagnose – The test sorts Long COVID patients into three groups based on their immune response.
🔹 What the test found – 60% of patients showed weak antibody responses, 15% had an overactive immune reaction, and 25% had unclear results.
🔹 Why it matters – This provides hope for targeted treatments, and more likelihood that pharma companies will invest big bucks, since drug development is much easier with good diagnostic tests (by knowing that people in different subtypes are getting what they need).
🔹 Caution before rollout – COVID expert Prof David Strain says, "Just because there is a test, it doesn’t mean it should be rolled out across the board. This needs a bigger trial… The right way forward is to collect around 300 patients, identify which cohort they fit into, treat them, and see if they get better"

If proven at scale, this could be a major step forward in tackling Long COVID – but more research is needed.

Source: BBC

​II.

A new study builds on evidence that SARS-CoV-2 spike proteins can linger in the brain and skull bone marrow for years, possibly driving chronic inflammation.

🔹 Spike protein persistence – Found in the meninges and skull marrow up to four years post-infection.
🔹 AI-powered discovery – Cutting-edge imaging technology helped uncover these hidden spike proteins, showing their unexpected distribution.
🔹 Vaccination impact – mRNA vaccines reduce spike protein accumulation in the brain by about 50%, but don’t eliminate the risk entirely.
🔹 Potential for new treatments – Targeting lingering spike proteins could open doors for diagnosing and treating Long COVID-related neurological damage.

Source: Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19

III.

Normally this blog focuses on positive news, however I also enjoy the power of a good vent! So thank you NPR writers…

Frustration mounts as US federal research on Long COVID still lacks treatments

🔹 Four years in, no FDA-approved treatments – “It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,” says Meighan Stone of the Long COVID Campaign.

🔹 $1.15 billion spent, but where are the results? – Despite the NIH’s RECOVER initiative, some researchers believe the program lacks “clarity of vision and clarity of purpose.” Dr. Ziyad Al-Aly says, “What [RECOVER] lacks, really, is clarity of vision and clarity of purpose.”

🔹 Patients feel gaslit – Long COVID patients often struggle with doctors dismissing their symptoms. Chimére L. Sweeney of the Black Long COVID Experience says, “You’re at the whim of somebody who may not even understand the spectrum of Long COVID.”

🔹 NIH defends the slow pace – “Good science takes time,” says NYU’s Dr. Leora Horwitz, pointing out that the condition affects nearly every organ system, making it difficult to study.

🔹 Not enough focus on treatments – “Only 15% of the budget is for clinical studies. That is a failure in itself—a failure of having the right priorities,” says Dr. Ezekiel J. Emanuel.

🔹 Insurance battles make it worse – With no approved treatments, Long COVID patients must rely on off-label drugs, often paying out of pocket. Hyperbaric oxygen therapy, for example, can cost up to $8,000.

🔹 A glimmer of hope? – NIH recently requested proposals for new treatment research, but patients remain skeptical. “The name’s a little cruel and misleading,” says JD Davids of Long COVID Justice, referring to the RECOVER initiative.

Call me naive, but I have faith we’ll get there. In the meantime, I’ll take satisfaction like the Germans do in a good grumble!

Source: NPR

1 QUESTION FOR YOU

What gives you the most satisfaction to vent about?

puppy p.s. Whisky stares mischievously up at a beautiful kererū / NZ wood pigeon safely out of reach in a silver birch

Whisky stares mischievously up at a beautiful kererū / NZ wood pigeon safely out of reach in a silver birch

This was the first time a kererū ever landed in this tree… you can admire their beauty up close in this youtube vid

Wishing you a peaceful week,

Tom and Whisky

☺️

It's now 3:30am where I'm at and I've been up for 2 hours. I don't know why because I was absolutely gobsmacked exhausted when I went to bed at 10pm.

I read this can be common in ME/CFS. I never get to sleep through the night!

Hi folks, every time I try to take glutathione (either in liposomal form or as a precursor like GlyNac) I feel extra symptomy for several days. I'm wondering how many other people experienced this and pushed through until they felt better? Or if you tried taking glutathione for a long time but it always made you feel bad?

(I'm pretty sure my illness was caused by living in a series of water damaged buildings, so I've been taking the glutathione in the hopes that it's helping me clear some residual mycotoxins or something, and that the extra symptoms are just inflammation from that process.)

Hey! I'm mild, so yknow. I dunno. Anyway. Tomorrow i'm starting year 13 because I was too tired to complete all the classes needed in yr 11 and 12, so I did school part time. My schools been amazing with it, so no problems there.

I wanted to be a vet. I thought maybe I could do part time schooling at university, but the only vet course is in a totally different state.

So I thought maybe I could get a cert 3 in animal care and grooming and work as a part time groomer. But the only course is a whole semester of 2 days a week at doggy daycare.

I can't do that. I couldn't do 4 half days. I did work experience at a vet with half days and couldn't even get past day 3 because I was crashing.

I don't have any skills in tech or anything so I can't do stuff like that at home. I don't know what to do anymore. I want to work with animals. I don't want to be a financial burden. I just turned 18, I feel like im useless. I've been sick since 13. I've never done anything

I don't feel like this all the time, I just recently found out about the cert 3 course yesterday and have been feeling really down, but usually my mental health is pretty great actually.

A recent review of 14 studies (N=809) on dietary supplementation for ME/CFS fatigue revealed some encouraging consensus results. Interventions like L-carnitine, CoQ10–selenium, and NADH showed reductions in fatigue, even though challenges like small sample sizes and data gaps exist. While results for cognitive function and inflammation were mixed, there’s hope for improving treatments in the future. 

Full article here: https://www.mdpi.com/2072-6643/17/3/475

Seeing an interdental medicine doctor that wait list is closed and is extremely smart. He has a theory of mitochondrial dysfunction since 2017, and seems ahead of the research. This is his regimen I’m on for CFS, fibro, and dysautonomia. It’s “tailored” to me, but to tailor it to other people he mentioned there’s not much differences.

Requirements: Fish oil D3 Probiotic

He never went into these in depth, or what brand or dose, just wants this as a staple to always have even if I’m recovered.

MAIN:

Vitamin C 500mg a day L-GLUTAMINE 5G a day Magnesium 100mg x2 day CoQ10 100mg x2 daily 500g taurine daily MSM 1000mg a day Phosphatidylcholine 1,200mg a day B Complex Plus pure encapsulations 1x a day

Future supplements I’ll get on, not sure when: Fucoidan ALA

Diet/other: zero sweets at all. Mentioned high fructose corn syrup is awful for us, not a single sip. Avoid processed carbs, unprocessed okay. Eat fruits every other day

Bonus recommendations if you can afford: HBOT Mental health therapy Massage, regular massages, and including Perrin technique are all good to him

How do you handle hope vs accepance? Are you happier now if you accept that you'll probably never get better, or does it make you feel sad or bitter?

I'm still continually surprised that I'm not better yet, even though I'm aware that recovery is rare for those of us who have been sick for a few years and are on the severe side. I think the vague background belief that I will get better keeps me sane but it also distresses me when another month/year has gone by without improving.

So I'm wondering, is it worth it to drill into my head that I'm probably going to be like this forever, and be pleasantly surprised if things do change?

I have noticed this strange pattern in my heart rate while sleeping — I tagged the incidences here with 🏷️. My heart rate increases steadily over an hour/half an hour before dropping suddenly. Is this normal? what is this? could it be related to sleep apnea?

I am severe and effectively bedridden. My partner is my caregiver. We have a good relationship. There is however a problem I don’t know how to solve.

I can sleep so deeply sometimes that when my caregiver tries to wake me up, I will talk in my sleep—saying things to talk them out of trying to wake me up. I can be grumpy about it, too. My caregiver gets triggered and upset and has decided to just stop even trying to wake me up.

I don’t know what to do. I feel terrible for being grumpy at them when I’m asleep. I don’t know how to change my behavior when I’m not awake.

So the result is that I sleep all day because my alarms don’t wake me up, and neither does a human. I set sooo many alarms. If they’re too loud and obnoxious, I wake up with so much adrenaline that I feel sick. But if they’re not loud enough, they don’t wake me up. It’s a fine line and the easiest way for me emotionally to wake up is by my caregiver, who is gentle and kind but persistent.

Today, my battery died (fully my bad, but tbh I’m severe and I screw up a lot) so I stood no chance whatsoever of waking up. I slept until like 530pm. Was supposed to take meds at 11am.

When I sleep all day, I feel extra bad about myself. When I’m a jerk in my sleep, I feel really crappy about myself and also guilty for being mean to my caregiver. (Not like I’m slinging insults but I’m also not making anyone’s job easier.)

But I also feel so hurt and let down that they won’t even try, and selfish for thinking that way. So many feelings and not enough spoons for them all.

It feels like it shouldn’t even be this big of a deal but for some reason I’m crying about it. I’m so so upset. Like how can I maintain my baseline when I’m missing my neurological meds, and how can I do this by myself? I’m failing at it. But idk how to do it differently bc I’m the problem but I’m not even awake to know it. 😭

Please if you have any advice please share. And please be kind bc I’m already feeling horrible about the whole thing and probably so is my partner. :(

Edit to add TLDR

TLDR… I’m a jerk in my sleep so my partner/caregiver won’t wake me up to take my meds, but alarms don’t wake me up either. Seeking advice.

I have moderate/severe ME/CFS as well as some other chronic illnesses that often are associated with it. I am mostly housebound and spend most of the day in bed. Sometimes I have good weeks or a good month, but I always seem to end up back here being mostly in bed. cardiologist has begun treating me for a type of heart disease (not a blockage). I am thankful to have a cardiologist who took me seriously and believes me about my chest pain and other symptoms.

However, she wants me to try the modified Levine protocol to help with POTS (which I also have) and then if it’s successful, start me on a cardiac rehab program (which also involves exercise). I reminded her that I have ME/CFS and she said she knows, I said I am concerned the exercise would make me worse. She said that they were gentle exercises and that the Levine protocol lets me move at my own pace etc. She wants me to at least try. So does my family. I do too. There’s a lot of heart disease in my family including a close relative that died relatively young. It seems worth the risk. But then it also doesn’t seem worth the risk bc I don’t want to get very severe.

I looked at the Levine protocol info she sent me and it was hard to understand (brain fog!), and from what I could tell is way too intensive for me. I would have to modify it down to a much lower and slower program to start (which I don’t have the brain power or knowledge to do). So maybe I can ask for a PT referral who knows about ME/CFS and they could modify it for me and guide me through?

Does anyone else have heart disease and ME/CFS? Or a different condition that requires exercise? How do you manage all the conflicting advice? How do you help your family and loved ones manage the conflicting advice??

My neurologist diagnosed my ME/CFS and treats it for me. I could ask his opinion but I don’t think he knows a ton about it. He seems to keep up to date on some of the pharmacological treatment options but he’s not an expert by any means. But y’all know how hard it is to find a doctor who believes you and will treat you, so I’m sticking with him. He’s been wonderful overall - I’m just not sure he’s an authoritative source on exercise and PEM.

Anyone have literature (that I could possibly share with my doctor) about ME/CFS and the Levine protocol and whether it works for us? I know that GET is not a good choice for ME/CFS. But does the Levine Protocol count as GET? Anyone have experience themselves with the Levine Protocol? Or heart disease that isn’t a blockage?

I could use some advice and would love to know I’m not the only one in this situation… I already have a lengthy list of diagnoses… why does the universe keep throwing more at me?!

tldr; In remission after three years.

Supplements:

GABA 300-1500 mg per day. S-acetyl-l-glutathione 100-500 mg per day.

Also, Lymphatic Drainage Massage (Perrin Technique) for neck lymph nodes.

GABA is used to make ATP. Glutamate clears out the ammonia by-product of the GABA shunt, reducing inflammation.

Lymphatic Drainage Massage also clears out the ammonia by-product, reducing brain inflammation.

Full post:

I've had CFS for three years, after a Covid infection. For the last six months I've been in a rolling crash that never ended- until a month ago!! I put myself into remission!!!

I supplemented GABA and s-acetyl-l-glutathione to restore GABA and glutamate levels on the recommendation of someone in this sub, while reading about the itaconate/ GABA shunt.

The theory is that if this CFS process has been running for a long time, eventually GABA and glutamate levels will be so low that there's nothing left to burn to create ATP.

Supplementing both GABA and glutathione (which is broken down into glutamate) lets the GABA shunt create more ATP.

The glutamate helps clear out the ammonia by-product of the GABA shunt, and helps restore GABA levels as well. Ammonia is toxic and inflammatory. High levels of it in the brain is especially bad.

Lymphatic Drainage Massage of the neck lymph nodes also helps clear the ammonia out of the brain. This reduces inflammation of the brain stem, soothing the central nervous system.

The GABA also helps soothe the nervous system.

I went into remission the same day, a few hours after taking my first dose of GABA and glutathione, and have maintained remission for a month, despite treating my body like trash and not pacing at all - sleep deprivation, high histamine foods, lots of strong emotions, walking everywhere, lots of reading. Basically throwing everything I've learned about pacing out the window with zero consequences whatsoever.

It's crazy. I feel like I'm back from the dead. I feel invincible. Less than 9 hours of sleep, two days in a row? No problem! I've cried so much in relief in the last month.

I'm going to start pacing again for a few months to make sure I heal properly and don't crash again, just in case.

I take anywhere from 300 - 1500 mg of GABA, and 100-500 mg of glutathione daily. The lymphatic drainage massage I do nightly right before bed, just on the neck lymph nodes.

The change is unbelievable. It was 100% the GABA, glutathione, and lymphatic drainage, and the switch over was immediate. Absolutely ZERO PEM, migraines, etc, and that includes a round of PMS that would normally worsen my symptoms.

Sharing this in the hope that it helps someone! Happy to answer questions :)

• Edit * For the dosage, I started with 300mg of GABA and 100mg of glutathione, once a day. I cautiously raised the dose over the next two weeks.

Sometimes I'll get lazy and won't take as much. Doesn't seem to make a difference, as long as I don't totally skip it for the whole day. I space the GABA out throughout the day, since a large dose all at once can cause an unpleasant heartrate increase.

At some point I'll taper off and see how I do without the supplements. It's possible that if the feedback loop has been broken, the innate immune system may be switched off again, and I may be in the clear. 🤞

This is a new symptom for me. At first I thought it was PEM but it doesn't follow the same pattern as my other symptoms. Should I be concerned about this?

I tested positive awhile ago for Early Sjögren's and I wonder how common this is in people with me/cfs. I thought about retesting to see if this went away over the last 5 years or so. I also wonder in general if retesting is a waste of money or not.

View Poll

I recently paid a lot for one and I was wondering how common this is. My doctors note was for work accommodations.

View Poll

If you read the Reddit long COVID forum r/covidlonghaulers, it is clear that generalised anxiety disorder (GAD) is a common comorbidity in LC. Many regular ME/CFS patients also suffer from GAD.

I wonder if the anxiety symptoms experienced by many long COVID and ME/CFS patients might be due to mast cell activation syndrome (MCAS) in some cases?

MCAS is common in long COVID according to a study, and MCAS can be found in regular ME/CFS also.

One study says the neuropsychiatric symptoms of MCAS can include:

Neuropsychiatric Symptoms of MCAS

• Anxiety
• Panic
• Depression
• Anger or irritability
• Mood lability
• Obsession–compulsion
• ADHD

The study also says that these neuropsychiatric symptoms of MCAS can be refractory to standard psychiatric treatments. So that means if anxiety or depression are due to MCAS, regular treatments (drugs or supplements) may not treat these mental symptoms adequately.

But if MCAS is the cause of the anxiety, depression or other neuropsychiatric symptoms in long COVID or ME/CFS, then possibly the usual MCAS treatments (like antihistamines, and mast cell stabilisers like ketotifen) might be able to alleviate these psychiatric symptoms more effectively.

So any LC or ME/CFS patients with anxiety or depression might look into over-the-counter H1 antihistamines like cetirizine or loratadine.

Note MCAS usually manifests with physical symptoms (listed below), so if someone is experiencing neuropsychiatric symptoms of MCAS, then there will usually be some physical MCAS symptoms alongside the mental symptoms.

Physical Symptoms of MCAS

These are some of the physical symptoms of MCAS. Note that the MCAS symptoms presenting in one sufferer may be very different from the symptoms presenting in the next, as MCAS symptoms vary widely, depending on which organ systems are affected.

• Skin: flushing/redness, hives or wheals, itching with or without a rash, swelling
• Gastrointestinal: bloating, stomach pain/cramps, reflux, nausea, feeling or being sick, diarrhoea, constipation, dumping syndrome
• Respiratory: sore throat, hoarseness, wheezing, shortness of breath, throat swelling, stridor
• Cardiovascular: chest pain, low blood pressure, fast heart rate, fainting or light headedness
• Naso-ocular: nose congestion, eye watering and itching 
• Neurological: headache, brain fog (memory or concentration difficulties), numbness, pain or tingling skin, anxiety, behavioural issues, rages
• Musculoskeletal: joint and muscle pain, osteoporosis (brittle bones), loss of bone mass
• Genital and urinary: such as genital pain or swelling, pain when urinating, vaginal pain, discharge or itching, bladder urgency or loss of control
• Extreme tiredness
• Food allergies or intolerances
• Anaphylaxis

Source: here.

Hi all, occassionally some unexpected stressor happens and my pacing goes out the window because I get overwhelmed, or also have to communicate. Then I know I'm in for a crash afterwards.

TLDR: How do you mentally cope with having a very bad pacing day?

Today it was that my roommate stole several of my ingredients for specifically my meals for this month, for the third time this week. I can't afford to replace them for another month, and live in food insecurity and poverty as it is. The boundaries have been communicated clearly, they have their own food, but they still do this to me repeatedly.

We argued because they thought I was overreacting, and I cried. I also had to journal a lot because I was so upset. So that's way out of my safe exertion range (as is writing this post, but oh well.)

Crashes are traumatizing and dangerous - I work really hard 24/7 to mostly avoid them. I really don't know how to cope mentally if I make a nontrivial pacing mistake.

How do you all mentally cope when a serious pacing lapse happens? I know it's not helpful to attack ourselves over it. I'm interested in how others handle situations like this.

Thanks all.

There are certain noises/frequencies/vibrations that make my body super tense and i physically cannot relax. It’s stuff like my neighbor’s heater, a bathroom fan, old pipes, humming fridge etc.

It gets in the way of my ability to rest/sleep which gets in the way of my ability to function. The weird thing is it’s not all noises and it’s often noises that are faint but annoying.

I often wear earplugs or noise cancelling headphones but it’s the physical vibrating that bothers me more than the actual “noise.” I’ve tried to just sit there and breathe through it but it doesn’t help. Does anyone have advice or experience with this?

Trying to figure out if I'm crashing or getting sick. Or both

Edit: thank you all this was so helpful. Also damn I'm definitely in a crash.

i haven’t been sick very long but i just can’t do it anymore. the pain and symptoms. even trying to get treatments exhausts me, my quality of life is so low, no caregiver seems to be able to give me a tolerable state to live in. i do have preexisting mental health conditions, i hope that wont exclude me—if i was even the way i was before m.e. (still chronically ill) i would not want this, i wanted a lot more for my life but this illness has ruined everything for me. i have my paperwork here. i’m just so tired and feel like i hate everything and everyone.

has anyone else applied? any advice or anything?

my only worry really is traveling with my pets when bird flu cases are high especially my cat… i may have to leave her at home which would be sad for me.

Feeling extremely sad and abandoned right now. My family won’t make any accommodations for me to be able to see them. They all go to parties sick, plan activities I can’t do, or plan things too far away. Then when I don’t go they act all offended or hurt even when I explain to them my limitations and what I would be able to do.

Right now I’m especially disheartened because I was looking forward to my favorite niblings birthday party, but my sister(not the birthday kids mom just another attendee) just told me she and her kids have RSV. They’re still going of course, but now I have to stay home and be lonely. THEY’RE the ones that should stay home. THEY should miss out for once instead of me.

I never thought my family was selfish or uneducated but now I think I’m being proven wrong. All of them always complain they’re sick all the time too, but can’t seem to connect the dots? They don’t even offer to mask for me.

My heart is broken. I want a new family.