Join the Conversation on
207 people
0 stories
15 posts
  • Explore Our Newsletters
  • What's New in

    I really hate having POTS.

    My sister and I recently had a discussion about my Postural Orthostatic Tachycardia Syndrome... We've become quite close since she became pregnant and gave birth to my nephew in 2021. She knows how much I hate that my POTS limits what I can do (especially when it comes to my nephew) and how exhausting it can be.

    The other day she was asking me if there's a way to cure my POTS and the Dysautonmia. I explained to her as best as I could that there isn't a cure, but there are some things I can do (and have been doing) that will lessen how much it wrecks my life. Like strengthening my leg muscles, increasing my salt intake, getting up slowly and so on...

    Yesterday afternoon I was hit with a pretty bad migraine so I went to lie down in my room with my blackout curtains shut to keep out any light. Not long after I'd put my head on the pillow, I suddenly really needed to pee. So, obviously, I got up quite quickly.

    Next thing I know, I can hear my mum and sister shouting, trying to wake me up - I'd fainted (not for the first time). As I came around, I could feel that something in my left elbow was really sore and burning. When they finally helped me up, they started freaking out. I was still a little out of it but when I looked down, my arm was covered in blood, as was my top and the rug I'd fallen on.

    Turns out, there was a small plate on the edge of my chest of drawers, by the TV, and we think that as I'd fainted and gone down, I'd knocked the plate to the floor, it smashed, as as I landed, it sliced into my arm in two places. As they tried to clean me up, it really fricking hurt. While we were waiting for a friend to take me to hospital, my nephew kept toddling over and handing me his favourite toys, and I just didn't have the energy to play with him and his bottom lip started wobbling. It broke my heart.

    Anyway, they got me to the Minor Injuries department nearby. I had to have nine stitches, then some antibacterial squares covering each wound, then a dressing, and then a bandage to keep it all in place.

    I felt awful, and I wanted the ground to swallow me whole. I hate this stupid condition. It's embarrassing and it's dangerous. POTS has also caused me to break my wrist and fracture one of the long bones in my foot before, by fainting at the wrong time. Admittedly, I don't think there's a way to faint at the -right- time, but you get what I mean.

    I guess I just really needed to rant a bit. I'm feeling very sorry for myself. Thank you for listening, though.

    #chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia #POTS #EhlersDanlosSyndrome #EDS #InterstitialCystitis #NAFLD #LiverDisease #Diabetes #BPD #Depression #Anxiety #GERD #IBS #Ranting

    28 reactions 6 comments
    See full photo

    What's Your Quirky Health Habit?

    We all live with different quirks, whether it be physical or mental health problems, there's a lot to navigate! So my question is - what is a funky health quirk you have?

    I'll go first. Sometimes when I feel like I'm going to pass out, I look at myself in the mirror because I want to see what I look like when I black out. Not that I'd even be able to watch it happen....because that's not really how passing out works. But still. I'm intrigued.

    Another one - when I have to take salt tablets for my POTS, I LOVE sucking on them. So much. They are delicious. I feel like a cow, licking a salt block but I don't even care. Bon Appetit.

    So how about you? Any funky quirks or confessions?

    #Spoonie #ChronicIllness #posturalorthostatictachycardia #POTS #MentalHealth #Anxiety #Depression #PTSD #PanicDisorder #Dysautonomia #Therapy #MyCondition #LivingWithPOTS #selfcare #Recovery

    5 reactions

    I feel weird...

    So, I have quite a few chronic health conditions, but the two that give me the most pain are Ehler's Danlos Syndrome and Interstitial Cystitis.

    As a result of this, I live in pain every day of my life. But I have good days and bad days. I have flares.

    Today, strangely, is a very good pain day. It's nowhere near as far as it usually is. If I were to put it on a scale with one being the lowest and ten being the absolute worst... I'd give it a 3. On the average day, I tend to be around 5 or 6. So being feeling like a 3 is... Weird.

    I'm so used to the level of pain I'm usually at. But today I feel so strange. It feels like something isn't quite right and it honestly makes me feel very nervous. And I have no idea why. I feel ridiculous.

    Does anyone else feel like this when their pain is better than usual? I feel like an idiot.

    #chronicillnesswarrior #ChronicPain #POTS #EDS #EhlersDanlos #posturalorthostatictachycardia #InterstitialCystitis #BladderPain #Jointpain #IBS #cramps #NAFLD #LiverDisease #Depression #Anxiety #BPD #Weird

    24 reactions 15 comments

    Shoutout to the spoonies who use compression garments!

    I've just started wearing 30mmHg waist-high compression, and it's CRAZY how much effort it takes to get the darn things ON! I can't help but laugh as I wrestle myself into them. "I don't always exercise, but when I do, it's the 30 minutes of trying to put on compression pants". Haha. Although in all fairness, compression has been INCREDIBLY helpful for my POTS symptoms. And if I'm not mistaken, it has also been excellent for feeling secure (gotta love that PTSD, Panic Disorder, and Depression). Overall 10 out of 10, even if it takes a whole spoon to get into them.

    #compression #ChronicIllness #posturalorthostatictachycardia #POTS #spoons #SpoonTheory #anxeity #Depression #PanicDisorder #PTSD

    17 reactions 5 comments

    New Year's Resolutions

    Every year, I always set myself difficult NYRs that I never manage to fulfil for some reason or another. It's usually something like losing 35kg/80lbs off my weight within months, but I never do it.

    So, this year I've set myself two relatively simple ones that I think I'll be able to achieve by the end of the year, as long as I keep reminding myself. Hell, I might write them on my white board that's in my room so I never forget.

    Number one: To learn to accept and respect my limits with regards to my physical health.

    Number two: To know my worth and never settle for anything less.

    What ones have you set?

    Happy New Year, my lovelies!

    #chronicillnesswarrior #ChronicPain #POTS #posturalorthostatictachycardia #EDS #EhlersDanlos #NAFLD #InterstitialCystitis #BladderPain #Diabetes #Migraines #Depression #BPD #BorderlinePersonalityDisorder #newyearsresolution #nyr #Happynewyear #goals

    22 reactions 9 comments

    I'm really enjoying exercising!

    My health issues make it really difficult to exercise - particularly the Postural Orthostatic Tachycardia Syndrome. I faint pretty often, and because of that, I've always been terrified of doing any major exercise.

    But in the last few weeks, I've been slowly building up my tolerance when it comes to walking. Any time my sister comes over, we go for a walk that usually lasts just over an hour. I monitor my heart rate on my Fitbit, which is an absolute god send since it also helps me keep track of my weight loss progress and how well I sleep.

    My sister, despite being 5ft 1in, walks VERY fricking fast. I sometimes have to tell her to slow down, because I just can't keep up with her, haha. And I'm 5ft 7in! I have stumpy legs, damn it. But the fast pace means I lose more weight, so I try my hardest to catch up to her, hah.

    I'm really proud of myself. My step goal on my Fitbit is 6,000 steps a day. Which probably doesn't seem like a lot, but for me? With all my issues? I'd say 6,000 steps is ideal. Last week I managed to reach my step goal twice! Today, I walked into town (about 1.3miles), and reached 6k steps again! So, this week, I'm aiming to reach it three times, and maybe next week I'll try and go for four!

    I'm loving being close to my sister. It's only in the last 18months that we've bonded. I love what we talk about when we're out walking. I love my nephew and all the cute little cooing noises he does, like he's butting into the conversation, haha.

    I'm really proud of myself. My GP always says; "Remember, it's important to celebrate EVERY victory - even the little ones."

    So... I'm going to.

    #chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia #EhlersDanlosSyndrome #NAFLD #Diabetes #IBS #InterstitialCystitis #GERD #EnlargedSpleen #Migraines #LiverDisease #Dysautonomia #BPD #Depression #Anxiety

    57 reactions 11 comments

    My mum kinda pissed me off...

    So, I've been trying to lose weight for a long time, and I've slowly been losing it. I walk for 2-3 hours a week at a brisk pace, I've been really careful of what I eat and drink, too. A couple of weeks ago I had a review of my diabetes, and I was placed on a new medication that's going to help keep my blood sugars down. I'm still going to keep up with the diet and exercise, though. A nifty side effect of this drug (Dapagliflozin) is that it helps you lose weight, which my doctor thinks is a good idea.

    Exercising can be difficult for me because I have Postural Orthostatic Tachycardia Syndrome - when I stand up, my blood pressure plummets so drastically I often faint, and to make up for the drop in blood pressure, my pulse skyrockets - often getting up to around 150-160bpm. It's a horrible condition and I truly hate how much it limits me.

    I've managed to drop my weight down to 95kg (209lbs), and I'm really pleased. And my mother said... "I wish I had a heart like yours. MY weight would fall off too if my heart rate was constantly over 150bpm."

    Like... Excuse me? I couldn't help but get really angry. I'm not even sure how I managed to hold my tongue. I would give ANYTHING to be healthy. To not have this condition so I could have more of a normal life, so I wouldn't have to live in fear of fainting in public. I'm not even sure that ONLY having tachycardia would make you lose weight... But if it does/did... I still wouldn't want it.

    I'm just seriously pissed off. Would YOU be pissed in a family member said this to you? My friend says I'm overreacting. But, if anything, I feel like I'm underreacting.

    #POTS #posturalorthostatictachycardia #Dysautonomia #chronicillnesswarrior #ChronicPain #Tachycardia #EhlersDanlos #EDS #NAFLD #Diabetes #BPD #Migraines #InterstitialCystitis #HeartCondition #WeightLoss #Exercise #ChronicFatigue

    1 reaction 12 comments

    The New Normal

    This week has been a full amount of annoyances. Between pushing to get xrays read, dealing with finding specialists that take my insurance and watching Healow for my referrals it's been enough to get frustrated by.

    Constant pain in my hands as someone who loves to be creative has been frustrating. I can't sew or knit during my D&D games because I hurt so badly. The skirt that usually would've taken a day and a half tops to get done has taken over a week.

    In addition, my normally three to four days a week part time this week has stretched to a full five days, tomorrow being the last and by the time I get home I'm seriously dragging and there's no ability for takeout because most of it will make me sicker (and I live with my disabled brother and he's going to have all sorts of cooking issues) - tonight was leftover soup from last night which wasn't bad anyway.

    I'm tired. I want to know what's wrong so I know how to treat it. I have been moving my right pinkie upper joint back into place several times this week. My hands ache, my feet feel like they're being stabbed and the pain radiates from there. The Rheumatologist office hasn't called from the referral yet. And I'm pretty sure my poor GP is going to get tired of my requesting specific referrals but then again who knows. I like her. She's not prepped to deal with a zebra that she ended up with.

    I got the skirt done, the carefully hand done buttonhole I adore making hurt. and it's not as good as what I like to see. But it's done. I don't want to give up those sorts of crafts.

    I guess I'm just exhausted and frustrated.

    #posturalorthostatictachycardia #Fibromyalgia #waitingfordiagnosis #Depression #ChronicPain #thenewnormal


    I'm having my Loop Recorder taken out!

    In October of 2017, I had a loop recorder inserted to keep an eye on my heart. For those of you that don't know, a loop recorder is a small device (about the size of a small USB stick) that is basically an internal ECG.

    But since I've had it in, I've had pain around it, and spontaneous bruises that really hurt and come out of nowhere. Thankfully, I just received a call saying that they can take it out! And I'm so happy. But I'm worried about the procedure.

    Having the thing put IN was bad. I ended up with an infection and the pain was really bad. They had to sedate me to put it in because I was panicking so much.

    From what I've found online about how they remove it, it looks like it's really gonna hurt. Has anyone had it removed? What was your experience? Any advice is greatly appreciated.

    #POTS #posturalorthostatictachycardia #EhlersDanlosSyndrome #looprecorder #ecg #chronicillnesswarrior #InterstitialCystitis #ChronicPain #LiverDisease #NAFLD #Migraines #Diabetes


    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