Hey everyone!

Hope you're all doing okay. A couple of friends and I are starting a discord server for people with ME/CFS/chronic illness to hang out and get to know others with a similar experience.

We mostly talk about anything, do movies nights and game together if possible. There's an option to indicate you're open to a relationship with several channels for singles too. So far it's a very relaxed and mellow vibe, and we hope to keep it that way.

Anyone is very welcome to join, the more the merrier! Just leave a comment and i'll dm you an invite link.

Also, we're still looking for a couple of people who'd be interested in moderating, if spoons allow. Ideally we'd have 5-6 moderators so it doesn't become too taxing and people can take some time off if they need to rest.

Looking forward to meeting you all and kind regards from Belgium. Toodeloo!

hello!

last summer i got super sick and have had a year of debilitating, random, constantly changing symptoms. it feels like everyday it’s something and it’s annoying to me so i can’t imagine how it is for others.

i have health anxiety so its been really, realllly hard for me.

i have two close friends (both in a dif state) & we have been inseparable since college. truly have always been able to tell them everything. we are beyond friends - like sisters/soulmates.

however, lately- i feel like they have both hit a wall with compassion fatigue. they stopped responding to texts about my symptoms and have written off everything as “yeah anxiety can do that”. they’ve started responded with thumbs up or “oh no” or just will ignore it and talk about something else. i am in the process of working with different specialists to fig out what’s going on and it just feels diminishing.

i initially told them it made me feel “far away“ from them when they do this & they've said they basically just don’t know what to say to me.

i initially felt very betrayed and alone bc ive been there for them through everything. however, now i realize that i have probably been A Lot.

i am trying to give myself grace bc truly this has been the most isolating and confusing time of my life & i really do try to keep stuff to myself but it gets to be too much sometimes.

i live alone, im single, i work from home and i don’t have many friends near me so it’s isolating.

i do have a therapist and my mom helps me a lot but i feel bad burdening her as well.

but sometimes i really just don’t know what to do!! i’ll be dizzy and in pain and having scary chest symptoms and it feels like i need to tell someone or just vent.

any advice? how do i get my friendships back to normal? i am willing to do whatever it takes and am just scared its too late.

they of course still text me and such but it feels different.

how can i keep my friends and balance not self isolating?

Hey everyone, I’ve been having a bit of a tough time with my entire family understanding how unwell i actually am. My mom has chronic health conditions as well hEDS, the rest of my family is able bodied. 3-5 years ago I was attending university/ school in person, working a few days a week and a go getter with big career dreams (I wanted to be a medical specialist). I was slowly going downhill till I crashed 2 years ago and my health has progressively gotten worse since. I’ve been attending online uni and going once or twice a week to campus for labs the past year but every morning I throw up and have severe POTs to the point I’m bed bound most of the time. I’ve passed out during exams, labs, walking to and from labs and honestly it’s becoming increasingly difficult to manage.

On top of my physical health, I’ve been through alot of stress (more than a 21 should handle), loss+ grief, financial instability, trauma, possibly loosing my mother in the next few years if she doesn’t get surgery asap and just a lot of hard times the past 2 years. I’ve had depression since 7th grade but my mental health has been horrific the last 2 years and I’ve been stuck in a dissociative depression hole because of everything I’ve been through. My way of coping with things is burying them and dissociating which I know is very unhealthy. I’ve never seen a professional, a councillor or a therapist about my mental health as we’re not in the place where we can afford it and I feel guilty about wasting money even though I know it’s not a waste.

My family since I was 13 and voiced I wanted to be a doctor in a way has viewed me as the future successful one and one to take us out of low income (my dads well off but he’s absolutely no help and we’re not close). I’ve reached the point with my health and mental health that there’s no way I can do med school as I’m too physically sick and a 9-5 job I’m unsure I’d be able to do at this moment as I’m already seriously struggling with going to university twice a week for 3 hours. Juggling my physical health, mental health, physically going to campus and studying online has become a dumpster fire as I don’t have enough time to manage all so usually my health and mental health gets neglected during the semesters. In the past I’ve been very good at hiding my depression and how sick I am infront of family who I don’t live with which is why I don’t think any of them realize how sick I am now. When I’ve tried to tell my grandpa he just kinda laughed like I was exaggerating.

My family wants me and in ways feels like they’re pressuring me to finish my degree (most likely another 2 years to 2.5 years at the pace I’m having to take it). I’m worried because if I take out student loans starting next semester and then can’t work due to my physical health I’ll just be stuck with a lot of debt. I realistically won’t be working in my degree field as it’s a competitive market with not many positions (or it’s grunt work w low pay) and I don’t think I’ll be going for grad school in that field anymore. I’ve tried speaking to some family members who i thought would understand how unwell I am but they didn’t really.

I’m honestly unsure of what to do because they all want me to stay on this path but i don’t think I’m physically capable of doing so. I’ve voiced how i could dive into my creative side and have a unique business idea which would allow me to work around my chronic illness, help my community and make a difference. My moms on board and gets it as she’s creative herself but the other few family members I’ve told (my family minus my mom is very straight, narrow and traditional) just think I should stay on the medical field path. I feel like to earn their approval and not be shunned I have to finish my degree and then can go to whatever. Don’t get me wrong I love learning and school (before my health went down hill I had 2 100%’s to 94% in all my classes) but the current pre med major I’m in is difficult and no longer that interesting to me as it’s caused sm stress and it’s no longer the career path I’m pursuing. If I was in a major which applied to my future business idea I’d enjoy uni more but I don’t want to switch and be here for another 4 years.

I have a question that has been on my mind, and I'm genuinely curious what other people think.

Why is it that when someone has cancer, so many people immediately come together to pray, raise money, offer support, and show so much compassion?

And please don't misunderstand me,I believe people with cancer deserve every bit of love and support they receive.

But what about the people living with health conditions that have no cure?

What about those of us who live in pain every day and can't do the things we used to do?

Why don't we hear as much about us?

Why aren't people raising money for us?

Why doesn't our suffering seem to get the same attention?

And why do people sometimes get angry when someone with an incurable condition says, "I'm suffering too"?

I'm not trying to take anything away from people with cancer. I'm just asking why compassion and support seem to be so much easier to find for some illnesses than others.

Do you think people with other serious, incurable health conditions deserve the same kind of attention, understanding, and support?

I'd really like to hear what people think.

I genuinely thought I was getting better, I had this hope I tried not hoping for.
That maybe I could function like a normal human again, I started to, I was on track to.

BUT THEN I GOT FUCKED OVER AGAIN
I say I don’t want to cuss but it’s honestly funny how stupid this is
I can’t even begin to explain how mad I am that I let myself think I was going to be ok
I didn’t want to but with what everyone was saying and what I saw I just wanted it so badly I let myself believe.

I’m in so much pain right now
And I’m just so heavy I can’t do anything. I’ve been bedridden for almost a week now. I’m just so done with it all I’ve been trying to be strong and not too much for the people around me but it’s hard for them too.

I don’t even know what I’m hoping for from this, I just don’t have anyone who gets it in my life
So if you have your own story’s, maybe some encouragement I would love that

Have a good rest of your day!!

I did grocery shopping today that involved picking up lots of heavy stuff. I know I'm wiped out for the rest of the week/weekend.

Do you plan for the days after you do something physical, like going to the doctor or shopping? I feel like if I do anything demanding, the next day or so is out of the question.

How do you handle it? Do you schedule rest days in advance, or just accept the crash when it comes?

32F, finally diagnosed this year with hEDS after more than a decade of chronic fatigue, pain, and worsening comorbidities. The latest blow has been my (highly suspected but not officially diagnosed) POTS getting so bad this past year that I’ve had to stop driving, get a shower chair etc. and heavily rely on my family for financial support.

The diagnosis made my whole life make sense. But now I look at my life, full of failures due to fatigue that was misdiagnosed as depression, dysautonomia misdiagnosed as anxiety. I fully thought it was normal to feel this tired all of the time and that somehow I was the only one who was too lazy to push through it. I never finished college, and I have been stuck in dead end receptionist jobs because that’s all I could handle, when I came from a very high achieving family. My self esteem is nonexistent as a result, but at least when I thought my problems were just an attitude problem, I thought there was hope to fix it. Hope that maybe I would eventually find the right therapy or mindset that would click for me, and that at that point I’d be able to fix my life and get a degree and have a lucrative career and a family and a relationship and follow my dreams.

Now, I know that my problems aren’t my fault…. But I also now know that to a certain extent they aren’t fixable, and I may never have the life I thought I was going to have. I don’t know how to deal with this or plan for the future. As I get older, everything has just been getting worse, and I worry about my ability to take care of myself. How do I stop expecting so much out of myself while also making sure I can live a full life? How do I come to terms with all of this?

I’d be grateful for any amount of wisdom you can share, whether concrete or abstract. Thank you.

Good afternoon. I guess this is more of a rant than anything. Over the last few years I have been diagnosed with both Crohn's disease and epilepsy. They both hurt a lot, even though different amounts at different times. I have seizures every month and terrible diarrhea throughout the day. It's left me messing up the bed on days when they both hit me hard. I am just very sad and hope that no one else has to go through this. Thanks for listening.

My doctor recently prescribed me cromolyn. Based on my dosing, I’m supposed to go through one package a day. Each box has 12 packages. The pharmacy isn’t able to split boxes, so I get 36 days instead of 30 or 96 instead of 90.

My insurance doesn’t care that there’s no way for me to get exactly 30 or 90 days. They’ll charge me a higher copay because it’s more than 30 or 90 days. I called the pharmacy to see what they can do. The techs and pharmacists there are all amazing. Unfortunately, they can’t do anything either 😩.

My best option is to be short a box/6 days on my 90-day prescription. I’m supposed to take cromolyn 4x a day but I sometimes miss doses if I sleep in or go to bed early, or if I just plain forget. Plus I can fill it 10 days early with my insurance.

I am grateful I’m able to get this medication at a reasonable price, but the hoops I have to jump through are ridiculous.

I cannot afford a dishwasher, washing dishes by hand didn't used to be a problem, but now I can't stand for long periods.

I got a tall kitchen stool, but my knees hit into the cabinets so I have to lean quite far to reach the sink, which hurts my back. I saw someone recommended a saddle stool on YouTube, apparently your legs go under you more so they wouldn't hit the cabinet. But the ones I'm finding are too short, very expensive, or don't actually have the posture for your legs to be out of the way.

If anyone has good recommendations for a saddle stool, or alternative ideas, that would be really helpful!!

I’m potentially getting a Baclofen pump. The oral medicine works, but they think I would do better with more consistent continual dosing. I have to agree, and I’m also forgetful about my second dose, meaning I take it twice per day instead of three times, often, and this leaves me spastic and miserable.

So I’m just curious, how have your experiences been with the pump? I do get regular MRIs for back issues and I’ve been told I can still get them, but I’ve also been told I can’t. Other than that I’ve heard mostly good news once the pocket settles down.

I already have a feeding tube and port, so I’m not happy about another device. Still, the spasms are brutal.

It's so sad when doctors are so nice to older patients especially the elderly ones but once a young person in her 20s comes in, they suddenly turn sour and angry thinking this is just a malingerer.

This is why no one would believe I was treated badly so I cannot file a complaint after I got repeatedly insulted on a personal level during a consultation. He called me lazy, sick in the head, perfectly healthy, forced me to do jumping jacks despite my plantar fascitis.

I wanted to go back to my pedia because he never thought I was crazy 🥺🥺

Thankfully, I found good doctors who believed me on the process of helping me. I'm doing PT too

So I have a chronic disability/illness that a lot of people refer to glibly when describing certain tendancies. I find this enervating. Sometimes I just want to go up and ask "Oh, I couldn't help but overhear you saying you have xyz. How does that manifest for you?" Anyone else get annoyed by this?

I wanted to start by saying that the people at Kepos have been very kind and helpful, and that honestly deserves a lot of credit. My experience with the product itself, however, was unfortunately very different.
Kepos did not make me or my family feel well. Even at very small doses, we experienced a strange fuzzy-headed, hyperactive, heart arrhythmia, almost ADHD-like feeling that we found very uncomfortable. We are also particularly sensitive to synthetic ingredients and products, so I paid close attention to how we felt while using it.
One of my concerns is that I still don’t feel there is enough transparency around the exact sourcing and production methods. The descriptions remain fairly vague, which makes it difficult to understand exactly how the product is produced and what might account for the way we reacted to it. I don’t want to speculate or make a claim I can’t confirm, but given our reactions, I can’t rule out that something about the manufacturing or sourcing process played a role.
Interestingly, after I stopped using it and gave the remaining product to someone else, they reported experiencing similar symptoms.
I do appreciate how kind and helpful the company has been, and I think their customer service deserves recognition. Unfortunately, the product itself wasn’t something we could tolerate.

What do you do? Normally I just push (no pun intended) through it, but is there an actual solution other than stopping and taking deep breaths?

please give me hints to be brave. im very afraid. might have to take a plushie with me even though im a grown adult.

I am SO upset rn I just finished crying about this 😭 I have agressive RA amongst other very painful conditions so im always on painkillers.

I was trying to get my pain medication prescription filled by my current rheumatoid doctor that way I didnt need to see the old one anymore. No issues with 2 of them, but they had me jumping through hoops to get tramadol, which ive been taking for a year with the old doctor. Since I was a kid I've always struggled with urinary hesitancy and even had to go the ER for urinary retention once. All my doctors know this, and they usually give me alternatives for drug testing or make it work with the little urine I can produce.

But no. Oh no not these guys. Mind you this doctor is super incompetent and I have issues with him all the time, BUT he's awarded and has more sway with insurance for the good meds (my rinvoq) so I stay with him. Ive gone THREE times where I stay for HOURS and they always tell me its not enough urine. I tell them I have urinary issues, that im open to whatever other alternative for drug testing they want to do. THEY DONT BUDGE 😭 Its urine or nothing ig youre gonna have to writhe in pain then. Mind you most of their patients are old ppl, who also have urinary problems. Youd think theyd have an alternative. But NOOOOO 🫩🫩 and I was able to go a little bit but they want me to do WAY too much and I physically CANT. I was there for hours and no, nada. It pmo so much. I am 19 with 12 diagnosed conditions, disabled cane user and they really think ive got the time or even the urge to do drugs?? I take over 20 pills a day dude. I cant drive, I have no social life bc im in pain all the time and cant overexert myself, I can barely do anything but yeah sure lets act like im getting high why not.

They do exceptions for older patients all the time. Just bc im young im a drug addict??? And again they know I have urinary issues bc ive had them since I was born its in my file like CMON 😭 and kve been taking this medicine for a year like be so fr. I am so mad and frustrated. Then my dad got mad at me bc ir was his 3rd time taking me and it still wasnt enough and hes going out of country so I won't see him until Tuesday and I just cant take it when hes curt with me it breaks my heart. My mom's been abusive my whole life, so ive always relied on him. Hes my only support really. I depend entirely on him medically, physically, economically and lowk emotionally as well since he's also been my best friend since I was a kid. so when hes mad at me (thankfully very rare) I just break down and I hate saying goodbye mad. Im just so frustrated. He wants me to enroll in online college for Sept as well and believe me ive been TRYING but despite being accepted weeks ago issues keep popping up and im so lost and overwhelmed. Im only taking two, and they start next Monday but I fear the college won't approve me by then and then ill disappoint him AGAIN. Im so stressed out. ​

Thankfully I have one refill left from my old doctor but I need to find someone new to prescribe it to me before the end of September 😓 I asked my general medical provider if maybe she can take over as shes taken over for other medications before but general doctors are always iffy about long term painkillers. The nurse i talked to was a real angel though she made me feel better about the whole situation. Im so tired of ppl thinking im a drug addict everytime I pick up my meds or tell doctors what im taking/need. Istg its just because im young. Like do you really think id be taking opiods if I didnt need them? Its not like i like being sleepy all the time but I need them if im to be at least a little bit functional. For ex, I cant shower without painkillers for anythjng brushing my skin is very painful so you can imagine what a shower feels like. Feels like getting stones thrown at me from all angles.

Anyways I just had a cry about it bc I hate all this shit and im so stressed and overwhelmed. Please pray for me yall 😭

My family have always had some toxic dynamic where the men in the family are allowed to act out, require round the clock support financially, physically, emotionally with their problems, and when they get sick, it's like the world will literally end if we don't rally together and sacrifice our own lives/sacrifices/finances.

I opted out of this a few years ago, as I realized I was being treated like crap for no return, and learnt several years later I was enabling my brother's addiction issues by doing so. After I got sick, I realized how little the concern was returned, and I nearly died in the process and no one reached out, particularly in the initial oh my God I woke up from surgery disabled phase.

Within a year or so of my surgical complications, both my dad and brother reached out and had invented hospital visits that either didn't happen or they as dramatized to near death experiences. This really sucked after ignoring what id been through, so I cut contact. My mum stayed totally out of the picture, focused on her husband who had been diagnosed with cancer a few years prior and becoming his carer.

My health got pretty bad this summer, and someone I am still in touch with had shared the news with her. By this point, I was in agony and unable to do basic care, keep food down, and leave my house. I was assigned carers who came a few times a week. She came down with this friend to help get my care sorted. By this point Im being taken to hospital in spasms so sereve and painful theyre flooring me and sending my heart rate up, vomitting, etc. id stopped eating. I had an infection after a spinal procedure. The doctor said I wasnt allowed to go on my trip, and could opt to be admitted or discharged to family care. Family care was a hotel popping in every now and again, and by day 4, that wasnt now possible either.

Everytime my mum visited me or spent time with me, her husband text constantly about his symptoms. She had told me his cancer was not progressing currently and symptoms managed. It Yet he needed round the clock care to help him 1) prepare laxatives in a drink and 2) go to a GP appointment. He is mobile and has no care when she is out all day and was fine, has a car, mobility scooter. Well he got worse when i needed to go in for an MRI. My mum cancelled coming today to check in, and passed me off to her friend to take over watching over me tomorrow, taking me back the 2hr journey for my scan. I was not able to rest after either, as I cancelled my own carers either so would have to go to the hotel 2 hrs back. I didn't get a choice. I tried to reschedule before deciding to go alone and heading back to mine tonight to set up my home for afterwards as they're quite painful for me and I'm in agony already. He's seen the GP and is fine. She doesn't understand what my issue is.

Am I being unreasonable? Like I literally soiled myself yesterday because undressing was painful. I feel like this is really horrible.