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Community Voices

What should I do about the hot weather?

Hey, everyone. I hope you're all okay and doing as well as you possibly can be. I'm very desperate for some advice on the weather for Monday and Tuesday this week.

My health rapidly gets worse in warm weather. My POTS acts up and I faint a LOT, my joints end up hurting really badly, I get muscle cramps and I dehydrate VERY easily. And when I'm dehydrated, my bladder condition flares up and becomes extremely painful.

On both Monday and Tuesday it's meant to be over 40 degrees, and I can see myself suffering really badly. Does anyone have any tips/hacks/advice for me? I'm willing to try anything. I'm going to keep bottled water in the fridge, make sure I drink as much as I can without popping, and I'll probably stay in bed with my fan directed at me.

Thank you all in advance.

#posturalorthostatictachycardia #EDS #POTS #NAFLD #Diabetes #InterstitialCystitis #Migraines #ChronicPain #hotweather #Tipsandadvice #pleasehelp

12 people are talking about this
Community Voices

I’m starting to think I might have Gastroparesis.

Ever since I was a baby, I’ve struggled with stomach issues. I’ve never been able to vomit normally - I literally projectile vomit EVERY time. I’ve been told it looks like I’m a cartoon when I do it. I end up with EXTREME stomach and throat pain. And over the years, I’ve noticed that I can sometimes not have eaten for 6+ hours but I’m still bringing up an excessive amount of what appears to be undigested food.

This past weekend, I managed to catch Norovirus - the “winter” vomiting bug. Between the hours of 3:30am and 8:30am on Sunday morning, I was curled up on the bathroom floor sobbing, unable to stop myself from bringing stuff up. But I hadn’t eaten since 6:30pm that evening. So, it had been around NINE hours WITHOUT consuming anything other than water.

TRIGGER WARNING - this part might be a bit gross…

When I started vomiting, I could SEE what I’d eaten for dinner. Very clearly undigested cucumber, cherry tomatoes, and stuff like that. I managed to fill a 2 LITRE bowl up twice in the space of about 30-60mimutes, then I continued to bring up insane amounts of bile (BRIGHT greenish yellow) for HOURS afterwards. This can’t be normal, surely? I thought the stomach was supposed to be empty after 4-6hours? But to have a FULL stomach after NINE hours? Jesus. I haven’t felt so ill in all my life.

From all the retching and vomiting, I’ve torn the muscles in my sides and my abdomen - it’s really hard to laugh and cough without crying. My fever was originally 39.8°C but is now down to 37.9°. I’m still achy, though. I imagine it’ll be a few more days before I’m back to my version of ‘normal’.

I’ve had SO many investigations for acid reflux, stomach aches and GERD in the past. All we ever found was the GERD, a hiatal hernia and VERY inflamed stomach linings. Surely gastroparesis would’ve been found before now…? How do I go about having this looked into?

Thank you all in advance, guys. And I’m sorry for the graphic description of my puke. 😬

#chronicillnesswarrior #ChronicPain #GERD #IBS #NAFLD #POTS #EDS #Dysautonomia #Norovirus #TMI #SicknessBug #InterstitialCystitis #Diabetes #Migraines

5 people are talking about this
Community Voices

Guess who managed to break her foot by WALKING!

<p>Guess who managed to break her foot by WALKING!</p>
12 people are talking about this
Community Voices

I’m so sick of existing…

Hello, everyone. I hope you’re all doing as well as you can be. I really need to rant to people who may understand what I’m going through. On November 4tb my sister gave birth to the most beautiful baby boy named Oskar. I’ve never loved anything or anyone as much as I love my gremlin (my pet name for him).

Ever since my sister announced the pregnancy, I’ve been terrified that I’ll only ever be known as ‘The Sick Aunt.’ The aunt he will dread going to see because I can’t play with him constantly, I’d have to take several breaks.

And then there have been other things going on…

I’m so fed up with my body. I hate it. Constantly interfering with anything that makes me happy or feel good.

Wanna go to King’s Lynn so I can go shopping? Have a date and then go back to my girlfriend’s house? Nope. Not allowed.

You haven’t paid attention to your bladder today. We’re going to make you piss yourself, then start getting cramps…

Wanna go to the fair? SURE! Ah, oh no… I have to stop after one ride because I was going to faint.

Then, Oskar playing on the floor, he keeps looking at me and reaching out to me. I sit on the floor to play. 5minutes later? Nah. Can’t do that. My hips, back and knees betray me as I slowly have to get up and he’s left with no one to play with.. I’m just so fucking frustrated and so sick of being me.

I just.. I really don’t know what to do. I’m so physically AND mentally exhausted.. I can’t cope with this. I don’t want to exist.

#POTS #EDS #NAFLD #InterstitialCystitis #Diabetes #BPD #Depression #Migraines #ChronicPain #chronicillnesswarrior

20 people are talking about this
Community Voices

I hate living like this…

<p>I hate living like this…</p>
14 people are talking about this
Community Voices

Does anyone else hyperfixate?

In the last six years of my life I have lost my fiancé, my dream career, my health and my independence. I don’t think I’ll ever be able to describe how devastating it is to experience not just one, but ALL of these.

I’m an avid reader - often getting lost in my books for hours and hours. I’m a gamer - I’ll immerse myself in an MMORPG (Massive Multiplayer Online Role-Playing Game) for hours and hours. I’m a writer… And I’ll lose myself in my notes, or in the paragraphs I write.

My family often poke fun at how easily I disappear into a completely different world. If they lived with the pain I feel every single day… If they lived with my misery and depression… They’d do absolutely anything they could to forget about the real world. I used to think that hyperfixating was a pain in the ass - I’d never get anything useful or meaningful done. But now? It’s my lifeline. The only thing that keeps me sane. And I’m sick of people judging me for doing whatever I can to stop myself from feeling like I just want to fade out of existence. I’m so very tired… So weary. I’ve had enough of them.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #EDS #NAFLD #BPD #Diabetes #InterstitialCystitis #Migraines #Depression #Hyperfixation #Hyperfixating #sad #Upset #exhausted #tired

3 people are talking about this
Community Voices

Wellness Wednesday: Non-Alcohollic Fatty Liver Disease (NAFLD)

<p>Wellness Wednesday: Non-Alcohollic Fatty Liver Disease (NAFLD)</p>
2 people are talking about this
Community Voices

New Year’s Resolution

I don’t normally do the whole New Year’s Resolution thing - I never stick to them. I always set goals that are next to impossible to achieve.

So this year I decided to set a fairly easy one.

My new year’s resolution was to respect the limits of my body. To take note when I’m getting close to those limits, to know when enough is enough, and intervene before things get too bad. Which I know is a good thing… But today I was visiting my sister and my little nephew (he is the light of my life)… And I’ve had to come home early because of my pain and exhaustion. And I feel like utter SHIT. I hate all these limitations. I feel useless and ashamed. I’m miserable.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #Dysautonomia #EDS #EhlersDanlos #BPD #InterstitialCystitis #Diabetes #Migraines #NAFLD #nash #LiverDisease #CarpalTunnel #Depression #sad #miserable #newyearsresolution

1 person is talking about this
Community Voices

I think I need help…

So for my whole life, my eating habits have been extremely weird. I am VERY rarely hungry during the day, and often just the idea of food makes me feel like I’m going to be sick. Sometimes I go days with maybe just a mouthful of food here and there. If I eat at all, it’s usually in the middle of the night.

HOWEVER. When I reach my time of the month… I feel like I’m starving. My belly grumbles so loudly it actually hurts. And the longer I try to go without eating as much as my stomach wants, the more it hurts and it sometimes even makes me cry. Thankfully, my periods are EXTREMELY irregular. I have maybe one period a year at the most. But for that one week… I just can’t stop eating. Trying to ignore it genuinely feels like torture.

Does anyone else have anything like this? My friend is a nutritionist and she thinks I have an eating disorder. But I’ve been this way for my whole life.

Any suggestions are VERY much appreciated. Thank you all in advance.

#chronicillnesswarrior #ChronicPain #POTS #Dysautonomia #EhlersDanlos #jointhypermobility #NAFLD #BPD #Diabetes #InterstitialCystitis #Migraines #Insomnia #EatingDisorder #eatingproblems #pleasehelp

3 people are talking about this
Community Voices

Does anybody else feel guilty for taking care of themselves?

For the last few weeks or so I haven’t been feeling right. I’m constantly exhausted - not tired, I mean fully exhausted. Even blinking feels like it’s taking too much energy. I’ve had several migraines and stress headaches. I’ve been feeling sick a lot, and I’ve had frequent fevers. I did both a Lateral Flow test AND a PCR test for COVID and both were negative.

I just feel incredibly run down. I’m barely able to sit up without feeling dizzy and/or fainting. So I’ve been lying in bed a lot, working on my writing skills or binge-watching TV shows. And I feel so guilty for it… My mum keeps seeing me struggle around the house and tells me to go to bed. So I have been. But I feel like I’m being so lazy and I hate it. Do any of you have any suggestions on how to not feel so bad about taking care of myself? I’d appreciate any tips and whatnot…

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #POTS #EhlersDanlos #EDS #NAFLD #BPD #InterstitialCystitis #GERD #Diabetes #Migraines #exhaustion #Depression #Guilt

21 people are talking about this