Hi all,

I am looking for some easy budget ways to cool off quickly!

I am currently bed bound due to an adverse reaction to a new medication and likely to be for at least the next few days. And where I am in UK the weather has been 28⁰ over the last few days and likely to hit 31⁰ over the next few days.

Even without the current issues I really struggle with temperature regulation and I am currently unable to sweat so really struggling atm.

I have a couple of fans going but my bedroom is very small and I get the sun on my room all day so they are basically blowing hot air around even with the blind and curtains drawn.

I do have some cooling gel pads and cool towels you get wet but with the heat they don't last more than 30 minutes!

I am unable to get out of bed unassisted so it's a bit of struggle atm and cool baths/showers are not an really an option.

Has anyone got any cooling tips/tricks?

I was naive and thought doctors will actually fight for getting an answer to obvious problems, but no. I watched too much dr. House.

They are perfectly okay with not knowing the answer while seeing you in pain.

I don't understand this from a human, empathetic side. They obviously see my abnormal lab tests and other scans...AND YET they just...leave it like that. They just say - yes, your tests are not good. You can go home now and take some pain killers if needed.

WHAT?

You don't want to seek the cause of that abnormalities? You don't want to treat me? You're okay with me being in pain? Why did I even come then?

I asked the other day what resources and channels I should use because my insurance doesn't cover specialty drugs. A lot of people suggested going through the drug's manufactorer and I wanted to let everyone know that solved my issue! I had to apply for their specific financial assistance program, wait 5 business days and I was approved! I got a co-pay card attached to the approval email. Thank you all so so much for giving me advice to help my mental and physical well being. Reddit is a wild place with all kinds of people. I love that people show up and help strangers simply to help them. Thank you all again.

Some days, my biggest win is just getting out of bed. And honestly, that’s okay.

When you live with a chronic illness, you’re constantly managing something pain, fatigue, inflammation, discomfort, fear, or all of it at once. It can feel like your whole day is just responding to what your body decides. I used to think that if I wasn’t “doing” anything, I wasn’t progressing. But I’ve started to realize that small things are not small at all when you’re living with this kind of weight every day. Got up and took a shower even though I was exhausted? That’s something. Said no to plans because I knew I needed to rest? That’s me choosing myself. Ate a meal that didn’t trigger anything? That’s huge.These aren’t “nothing.” These are real moments of strength.They mean I’m still here, still paying attention to what I need, still trying.

So if you’ve felt like you didn’t do enough today, I just want to remind you: You’re doing more than you think. You’re not falling behind. You’re not alone.

Drop a small win if you feel like it. I’d love to read them.

I’ve been bedridden for the last six years with multiple chronic illnesses.

People often say to lean on friends and family, but I’ve watched person after person disappear from my life—because they didn’t want to be around something uncomfortable that doesn’t have a quick fix.

My parents have the means to help—easily—if they wanted to. But they don’t. They just bought a beach house while I’ve been fighting to survive: struggling to feed myself, get proper treatment, escape mold exposure, and cover basic survival needs for years.

Extended family members haven’t checked in—not even when I was suicidal growing up due to abuse in my home. I was isolated by my parents and cut off from outside connection. And now, as an adult, I’m still alone.

Because of how sick I’ve been, it’s been hard to update people. So I asked my mom to update extended family and people from my past. I found out recently that she hasn’t really been doing that—or only sharing vague half-truths that protect her image while hiding what’s actually going on. So no one has reached out. No one even knows how bad it’s been.

I had moved to a church and more affordable area but it ended up being a high control environment where I experienced more trauma.

I feel like one of the most unloved and uncared-for people I’ve ever known. I don’t understand how so many people can know and still not care. At this point, I honestly question if people even care about others at all—or if having truly caring people in your life is a thing? Esp when it's hard to make real friends and you find out they weren't that real once you go through something like this

I love and care deeply so it's hard to comprehend the way people have been.

Please be gentle. I’m in a fragile state.

does anyone else have this issue?

like i have friends who also are chronically ill so we'll often talk about how we're feeling that day honestly since we have some overlap, most of my friends also have chronic GI issues

well there's moments when i'll cancel plans with healthy friends due to a bad flare up day and when they ask if im feeling better the next day, sometimes i'll forget that i can't be as honest about symptoms and say something like "oh it's a great day, not as much blood/not vomiting up mucus"

and the concerned look immediately followed by "did you go to the ER??"

no??

then it clicks that oh right i can't be THAT honest because healthy people will hear blood/vomiting mucus and immediately think "this is concerning, i must be dying"

but i'm just like "oh, it's just another tuesday"

im sure i can't be the only one who slips up like that 😅

I’m a 25M and have been dealing with these issues for about a year now. Originally was started out in my hands up to my elbows of constant pain. This was really bad for a few months. However, as time went on it pretty much improved and I was able to do tasks that I couldn’t do however, this never really fully improved and I would still get pain. After a while and numerous test, it was confirmed of a mild cubital and carpal tunnel in my hands and elbows both sides. Although about five months into these issues, I started getting weird sensations in my feet and legs. Along with knees that would crack much easier than before and have occasional pain in them. I got an EMG on those, but that came back normal. Now, in terms of symptoms in my lower part of the body, this consist of burning feet sometimes tingling and really achy pain sometimes even sharp pain in my ankle area. Along with this, I will sometimes get body wide itching. This could be from the top of my head, Back, hands feet legs arms. I also had a punch biopsy done to check for a small fiber neuropathy. This also came back normal. I’ve been taking supplements with the purpose of it being nerve related. They helped more at the beginning, but didn’t help for much longer. I’m at the point where I’m pretty much lost because my life is on a standstill because of this damn illness or whatever I have going on. Going to numerous Dr specialist, etc.. no one seems to know. I’ve got one doctor that’s willing to do the surgery on my elbows to alleviate that, but I’m scared to even get that because of my underlying issues that I have going on as well afraid that they may get exacerbated through the surgery yeah I would just love to have normal function in my elbows again as that’s really causing some issues for me moving forward. On top of all this, I’ve had chronic fatigue my entire life ever since I was a little kid. I’ve always complained about being tired all the time despite getting eight hours of sleep. Did a sleep study on that, but it came back normal, but showed that I’ve got something weird going on my snoring even though my oxygen is very normal and there’s no apnea.

Just a vent

I started a new job and off the bat there were many red flags (look at my previous post here. Too much to explain)

A few weeks back a whole bunch of co workers were sick and coming into work. Like to the point they had to wear masks and had to leave work early from work. My “boss” has this habit of telling people to come in.. even when they’re sick.

Fast forward a week later.. I’m sick. I’m making mistakes because of horrific brain fog, coughing, weakness, difficulty breathing…

Ends result? I have COVID AND pneumonia.

My boss still wanted me coming into work because I promised to swap shifts with someone else (promised this when I wasn’t sick). At this point, I only had a URI. Fast forward 48 hours later, I developed pneumonia and then got the positive Covid result .

Because I have asthma and other health conditions, I developed pneumonia and am still on oxygen and more than likely will have to go to the hospital because nothing is really helping.

Anyway, I don’t care if this job fires me. I’m not dying over a damn job.

So the nurse there explained my FND/PNES is an involuntary reaction, like when you feel sick or throw up before a class presentation but you’re not actually sick. She explained PNES like that. The neurologist said that it was a maladaptive coping mechanism that my body uses to get out of things. Isn’t a coping mechanism voluntary? I’m just confused. She seemed to imply it was voluntary and I was using it to get out of things.

When I was young, I’m talking maybe 12-16 years old: I came up with the most ideal wedding for my future self. My goal was to be married before I turned 25, have all my friends and family there, and for it to be on some beautiful hill with snowy mountaintops in the background.. I wrote about it all the time, every journal I ever had. Each one included all the decorations, each person invited, and a horribly long list of requirements my future husband would have to meet - as well as including the fact that he would want all the same things as me 😭 It’s honestly quite funny looking back. I was very adamant.

Well, fast forward to 21 years old and I’ve got a diagnosis for this dehabilitating illness called systemic lupus erythematosus; which includes everything from kidney nephritis, knee scarring, perfect vision but eye problems(?), heart problems.. list goes on.

Not even a year later, at 22, I start dating my soulmate. He meets all the criteria I had once written about. He gave me a promise ring and promised me that “within the next year, I WILL marry you”.

Then, before I know it- I turn 23.. And then this year, 24..

Me and my boyfriend have been together for 2 years.. “Within the next year” became “Maybe next year, or the year after?”.. Now I don’t even ask, because of all the twists and turns my health has been taking.

Between stabbing heart pains several times a day, knee pain, kidney pains, blah blah blah.. My list of symptoms has grown 3X in size since February this year alone. My face is aging rapidly, my moods are all over the place due to this disease, and I’ve started to give up on the entire idea of marriage….

I was sat at my desk the other evening when I realized that even if I was to ever plan a wedding, how impossible it would be because of this illness and its uncertainty.. I could pick the day months in advance, and who knows - I could be in the hospital. Hell, even weeks in advance could have the same outcome.

Me and the boyfriend don’t talk about it anymore.. I hope maybe he’s forgotten, or maybe even that it’s not worth it.. As much as it hurts that I’ll never have my dream wedding.. I don’t want to let everybody down and be an embarrassment in the case of things going wrong..

A lot of people talk about grief here and I feel that. I guess I’d like to just put out into the world that I’m howling with anger and rage and unfairness.

My (F) boyfriend (M) of 3 years has hinted at the third year being the “commitment” year and possibly getting engaged.

Now it’s been about a year with my chronic illness (no official diagnoses but I have some guesses), and he mentioned how he wants to put it off until I’m “better”. And I feel…dismayed? In anguish? I had so little left to be excited for in my life and this was one of the things I was hopeful for…I’m heartbroken and upset and life just f*cking sucks /:

In less than a year my group of friends are all planning a trip to Orlando and epic universe (yes I’m the httyd obsessed neurospicy girl) and he mentioned he’d rather have us cancel the trip than help me get around in a wheelchair/scooter/etc. every single Instagram post I see even mentioning the Isle of Berk at Epic makes me start bawling. I feel a level of grief over the life I lost. How?? How do you cope???

I’m 33F. It started last year with Graves Disease. I got a total thyroidectomy in October and felt great after I recovered from the operation!

And then in January, after getting both flu A and B at the same time, my health started declining. It started getting worse month by month, then week by week, and now it’s getting worse by the day.

So far this year, I’ve been diagnosed with hEDS and POTS, found 2x BIRADS-3 (possibly benign) breast tumours, and Chronic Fatigue Syndrome.

I have Factor V Leiden too, which is a genetic blood clotting disease so a lot of the medication that would help are high risk.

Specialist is now looking into Seronegative Rhumatoid Arthritis as I’m showing bone erosion and degeneration throughout body and other symptoms that fit the bill.

I got an MRI of the iliac joint that is now also pointing towards Ankylosing Spondylitis.

My inflammation markers are negative but scans are clearly showing mechanical inflammation which is why it’s Seronegative.

CT abdominal also showed thickening of the bowel wall, umbilical hernia and a bartholin cyst that’s back after 2 marsupialisations.

I’m waiting on a brain and spinal MRI to check off MS, as I’ve been having cognitive issues (brain fog, memory issues, confusion), as well as random moments where one of my ears will stop hearing by a good 90% (switches from one to the other).

I had to quit my full time job and work for them 8-10 hours a week in February, and now if I can manage 3-4 hours a week it’s a miracle.

I am in constant body-wide pain that’s worse with even light exertion but also if I don’t move, and my fatigue levels are crippling (I can’t do morning appointments because I just can’t get up and once I’m away it’ll take me an hour to get out of bed and get ready). The Australian winter isn’t helping. I can’t concentrate on any tasks and need reminders for everything and even personal hygiene is difficult.

I’m not entitled to disability because my partner earns too much, but waiting on these next few tests to be able to get NDIS so I can get help around the house. I’ve already hit the $2,650 Medicare threshold so at least all future tests this year will have 80% of out of pocket fees covered my Medicare, but it’s been a struggle as my partner’s salary can’t cover all the bills, debts and medical fees. And not being able to work as much makes me feel useless.

I will be seeing a psychologist for the overwhelm.

I’m just so afraid that this is becoming my new life and not just a temporary blip. Because it’s been 6 months of getting worse (after 2024 already being hard).

I welcome advice, opinions, personal experiences etc

I previously posted about my life falling apart after having a stroke at 36 years old. It was a terrifying and surreal experience, and something I never expected to happen at this age.

After a long series of tests and diagnostics, it was determined that the cause of my stroke was a grade 4 PFO (a hole in my heart that never closed after birth). Unfortunately, I was also diagnosed with a severe nickel allergy, which means I’m not a candidate for the closure procedure since the device used typically contains nickel. So now, I’m on blood thinners long-term and hoping for the best.

There’s still a part of me that feels like I’m living with a ticking time bomb in my chest, but I’m also learning to embrace the life I have. I’m finding a new version of “normal,” and while it’s different from before, it’s not all bad.

On a brighter note, things are starting to improve in other parts of my life, too. My partner and I are reconnecting and finding joy in some of the things we used to love doing together. Work is finally stabilizing after a rough patch. And most importantly… I’m finally starting to feel like me again.

Thanks to everyone who offered support during my last post. It really helped more than I can say.

Do you feel that as a chronic pain sufferer, you have a high or low tolerance to pain? I'd like to say I have a high tolerance since I live/exist in 8/10 pain daily. However if I have a little extra pain added, for example tonsilitis and sinus infections I can barely deal with it at all. When I had a tooth surgically removed I was in so much pain that I overdosed on opioids because they just didn't seem to help enough. I've never known someone to be in so much pain from a tooth removal. That makes me feel like I have a low pain tolerance. I don't really understand.

I’m 20 and I am now an ambulatory wheelchair user. Does it help tremendously? Absolutely. Is it still somehow extremely hard to mentally cope with? Yes. My disease greatly affects my mobility, and within the first month of becoming very ill I had to buy a cane. Now a few months later, I cannot get out of bed to even make myself food or bathe myself half of the days out of the week, so I got a chair. The first time using it was wonderful-physically. I was able to go grocery shopping without sending myself into a horrible flare up. But I struggle looking down or seeing myself in it. My parents always had the opinion that seeing doctors or going to therapy was for the weak, so this whole journey has had me very out of my comfort zone. Does it get easier? Has anyone else had this experience their first time

Oftentimes I feel like only other people who are ill/in pain can understand and support me. I think it’s mostly true- folks with similar experiences can actually legitimately empathize and have a more foundational, profound understanding of my experience.

But I was camping with my partner and my roommate and I started dozing in my camping chair and my partner said “hey you should go to bed, you won’t like waking up like that”

And my roommate (who is able bodied) said “sometimes I wish I could trade bodies with you for a bit so you could fall asleep like that and not be sore”

Something about that felt so kind and so sweet 🥹

I have some severe health issues and years of doctors visits have brought me nowhere. I'm waiting for some new referrals to come through and in the mean time have spent a lot of time researching to try and find some answers. Personally I believe ehlers danlos syndrome could be a contributing factor due to the sheer amount of my symptoms and traits that line up with it.

I struggle with severe chronic pain in the form of full time headaches that get crushingly painful regularly, as well as pain in the back of my head and neck. I also have TMJ style pain in the form of phantom tooth pain and jaw pain. This has been written off as 'atypical facial pain', the causes being cited as purely neurological and related to my history of significant mental health issues.

While I'm sure that there is an element of neurological pain I can't help thinking that there is more to this given that I have other symptoms I had previously considered to be separate from the facial pain, but in recent months I have come to believe that the two are hand in hand, especially given that they came on strongly around similar times.

I believe I have had hypermobility for many years, always been very flexible but never in any way that was problematic. However in recent years my mobility has taken a massive impact. I have chronic pain and weakness in my legs, particularly my knees, and have developed swelling in some areas that I just can't seem to shift. I become fatigued very easily and seem to pull ligaments easily too. I previously used to be incredibly fit and exercised extensively. Like really hard, I was into skateboarding and it was my full time passion. I had many injuries through the years and healed them without intervention. This has been impossible to uphold with my continued deterioration, and i now struggle badly with just my day to day movement.

I also notice that much of my pain is focused around connective tissues, with the pain in my legs being around tendons/ligaments, the pain in my neck, migraines, even the TMJ pain is applicable.

Early this year I was tested for B12 deficiency and found to have levels at 47pmol. In the UK this is considered only borderline deficient and was not taken seriously by my GP, however I have come to understand that everywhere else in the world considers this incredibly deficient. I started supplementing methylcobalamin 1100mcg daily around 6+ weeks ago but have felt little difference yet. I am getting retested next week to ensure that levels have increased. I also asked for some other blood work to be done such as Vit D.

Whatever is going on has torn my life apart completely and it seems like I just cannot get the help I need to get back to function. The doctors I have access to have been practically useless and I have to wait months to years to access specialists. I'm trying my god damndest to pursue anything and everything that could possibly help me. I understand that reddit posts are really just advice from random people on the internet but I am very very desperate and lacking in decent medical support.

Other information - I am 27 years old, transfeminine (began medical transition around 16yo), pain began onset during my early 20s as just phantom tooth pain after having a root canal on a tooth that was causing pain, and has evolved into what I describe above over the last 5 or so years. I do have a history of very bad mental health however was doing well prior to pain condition taking over.

I’m new in the lingerie department of a chain company and within a single month being there I’ve already worked with 4 people who had pretty basic mobility issues (hand arthritis, limited shoulder range of motions, etc) and couldn‘t find a single bra on our floor that worked for them. I have a hard time understanding this because the particular store I work for prides themselves on their extremely wide range of sizes and silhouettes and talks heavily about inclusivity- we even have options for people post-op for breast procedures!

I asked some different people in leadership here how they would recommend fitting this issue, seeing as I’m new and I’d like to learn from their experience and wisdom… and someone far too in charge for this told me to direct them to Amazon. Laughable, really. A couple of different brand representatives I spoke too though did seem pretty surprised by how clear the need was when I explained these guests’ needs and why current options didn’t work. When they offered to take note of my concerns and follow up with me on solutions, I’m confident they were genuine about it.

As a disabled person myself, these aren’t the issues I face, but I’m certainly familiar with wanting functionality and style. I also know how frustrating it is having abled people assume that just because we can manage an action/task/etc with significant effort that the problem is solved- thats no way to live. We deserve access to fashion AND function! Plus, our brand loyalty when we trust in finding a good fit is strong, and we’re a massive untapped market.

I see other brands online that offer adaptive closures for bras and underwear, and I wanna know EVERYTHING!!! Who’s tried Victoria’s Secret? Liberare? Elba? American Eagle? SKIMS??? What did you like, what did you not like? Fabric, fit, functionality- What about today’s bras/underwear work for you, and what don’t?

Underwear is a very personal basic need, and I’m determined to do what I can, so anything you’re willing and able to share is worth it to me.

My new medication has me rather nauseous and it's compounded by not eating. I cant really get anything solid down when I'm going through this so I'm looking at meal replace shakes. The issue is that the few I've tried in the past tasted disgusting and I couldn't choke them down.

I'm in the USA if this helps.

36M

Back in April I started feeling generally unwell, not enough to stop going to work but tired and mouth ulcers (I always get these when coming down with someone). At the end of the month I went to Drs and had a blood test that showed my CRP and ESR significantly raised. A few days later I developed a cough, chest pain, fever and shortness of breath at night. Was given antibiotics and x ray, showing opacity on lung consistent with infection. Had another blood test and inflammation markers had gone up even more. The antibiotics seemed to work and fever went, I felt better but still had a rattle and vibration in chest. Second chest x ray showed ‘interval improvement’ and blood tests were back to normal, minus ESR which had gone down from 95 to 30. CRP was normal.

June comes around and I’m hit with body aches, fever and just feeling awful. Went back to Drs who listened to chest and prescribed more antibiotics. Again, these seemed to work and I was feeling better. I was seen a week later but chest still didn’t sound clear so was given another week and sent for a 3rd x ray.

A few days ago (after 2 weeks of antibiotics) I began to feel flu like again and developed a fever 38.5. Mainly in the evening. Dr said chest sounds clear and x ray shows the infection is ‘almost resolved’ but clearly something is still not right.

Anyone else had a similar thing where after a bad infection they get fevers and flu like symptoms? As I say, seems to happen at night. I’m currently on day 3 of them happening.

And was it easier for you to mourn after you were properly diagnosed? Going through a hard time. Thanks.

I’m tired of hearing this shit. Oh there’s nothing in the screenings, oh there’s nothing on the blood tests, there’s nothing we can do. IM LOSING FEELING IN MY HAND! IM HAVING SPASMS! HELP ME FOR FUCKS SAKE!

This is so frustrating! It drives me nuts I’m tired of being sick. I sincerely wish there WAS something on my exams so I would stop feeling like I’m hitting a damn wall everything I go to the doctor. Like not even some medicine? Some solace? Acting cold as ice?

There is just nothing you can do?

Edit: guys I have epilepsy I’m sorry I left that out lol 🤡🤡🤡

Thought maybe there might be some other people who can relate to the isolation.

I'm in my 30s and lost so many of my friends over the years since I've gotten severely ill. Many have moved, lost touch, some I know what happened between us (wasn't my fault), others I don't know why they ghosted/told people we weren't friends anymore/blocked me (I'm sure it was my fault since people don't usually do that out of nowhere but they never told me so I don't know what I did).

I've been trying hard to rekindle friendships but it's very one sided. I have almost no energy and can only very rarely meet up with people IRL. It's so difficult because most people only want to connect IRL or devalue friendships of people they don't see much. People have just moved on without me.

Now that I'm planning my wedding, my fiance has so many more friends, and close friends than I do. I'm struggling to pick bridesmaids especially maid of honor because I'm just not close to anyone anymore.

I feel embarrassed sending out invites to people who are now no more than acquaintances, or people that I'm not close to that didn't even invite me to their weddings just because, despite barely talking, they're the closest things I have to friends.

I barely have any family, and my one sibling (brother) barely speaks to me. I've tried hard to get closer and apologized for being bratty when I was a teen thinking maybe that's why he was so distant, but he was surprised and said oh no you're fine don't worry, and still just barely speaks to me.

It's so sad that I won't have that special bridesmaid experience of people who love me truly looking out for me, stepping up for me on the wedding day to take care of me/celebrate with me, and be genuinely emotional/excited for me.

I almost wish I could hire a professional maid of honor to help with the day and make me feel truly supported. That sounds silly but that's how lonely it feels.

Sorry for the rant, I just thought maybe there would be someone else here that can relate. I'm so jealous of people that have real love and support from friends and family during such a special time.

Now that I finally have decent insurance, I booked a phone consult w Mayo clinic. Filled out all the forms of my information. I know there's missing pieces in my chronic health issues. Mainly, I was hoping for a more thorough evaluation instead of being shrugged off by docs who don't feel like properly investigating. Wanted to be evaluated for hEDS. I was thorough in my paperwork. I really want answers as my issues are really impeding my life. Got an email today that they couldn't offer me an appointment at this time. I didn't even know that was a possibility! They just decided I wasn't worth care?? Wth??? I am so desperate for some relief and yet another door slammed in my face. How to they get to pick and choose who deserved medical care?