posturalorthostatictachycardia

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    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

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    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

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    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

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    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

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    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

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    Does anyone else write in their spare time?

    For years now, since I had to leave my job in 2016, I've felt like I'm barely keeping my head above the water. I feel like I could slip beneath the surface and drown at any moment. Until last year, I had absolutely NO purpose whatsoever... And it was slowly killing me from the inside out.

    Until I started to write.

    Ever since I was a little kid, I've written short stories (and some longer ones) that people have absolutely loved reading. But when I became sick, I lost all my sources of inspiration... So I stopped. But last year, for some completely unknown reason, I had sudden ideas that were bursting to get out of my head and onto paper. So I downloaded Microsoft Office and started to write little bits. But I soon realised I was out of practice. To get back into the swing of it, I began writing fanfiction about the various TV shows and movies that I love. For example; Black Sails. Game of Thrones. The MCU. I even tried my hand a bit of erotica, too.

    People have loved my work. It's given me a confidence boost and a purpose. Life is slowly becoming more and more bearable. I plan to continue to write and improve my skills, and hopefully, maybe... One day I'll get published. I love sitting down at my laptop and creating a world of my own, where there's no pain, no disability... Where I can be a normal, healthy human being... At least for a little while.

    So... Do any of you write? What genre? Do you find it as freeing as I do?

    #chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia Syndrome #EhlersDanlosSyndrome #LiverDisease #Diabetes #Migraines #InterstitialCystitis #BorderlinePersonalityDisorder #Depression #writingcommunity #WritersCommunity #Fanfic #mcu #blacksails #Writing #creativewriting

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    How do I know if I have reached the point of needing a wheelchair?

    Hell, everyone. A little bit about me.. I have hypermobile ehlers-danlos syndrome (hEDS), POTS, small fiber neuropathy, fibromyalgia, Myalgic Encephalomyelitis, Hashimoto's disease, severe GI issues, and a litany of other conditions.

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    I currently use a rollator walker with a seat pretty much every time I leave the house, but do not use it in my apartment because it's a small space, I need it less inside the house, and my apartment except for my partner's is not mobility aid accessible. I am on IV saline infusions for my POTS. I am noticing as I get older, my POTS gets worse, I may have good lungs but I always feel dizzy, lightheaded, weak and out of breath. I also am very prone to chronic pain and injury due to my hEDS especially from standing and walking longer distances.

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    I am reaching the point where I am wondering if I need to get a wheelchair in the near future, but dealing with a lot of internalized ableism. Am I faking it? Am I being dramatic? Am I just lazy? How do I know when my health is bad enough to need it? With my weakness, dizziness, and severe fatigue from my CFS/ME and POTs combined with chronic pain, chronic injury, chronic stomach problems causing more weakness and fatigue and dehydration, and my rapidly declining neuropathy, I know I need help, but I do not know how much.

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    I know I need to strengthen my muscles and I need to exercise, but the threshold between the right amount of exercise and over exertion is so so small because I can only do a tiny fraction the amount than the average joe.

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    I also deal with paranoia that I will be harassed and hurt by strangers and doctors more because I would be an ambulatory (part time) wheelchair user as well as because I am plus size. When did you reach the point where you knew when you needed it? Has anyone needed it specifically struggling with hEDS, POTS, Small Fiber Neuropathy, or stomach problems? When did you know?

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    #SmallFiberNeuropathy #PeripheralNeuropathy #EhlersDanlosSyndrome #EhlersDanlos #HypermobileEDS #HEDS #POTS #posturalorthostatictachycardia #Gastroparesis #IBS #CFSME #CFS #ME #hashimotos #Wheelchair #ambulatorywheelchair #MobilityAids

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    Pots and stimulants ? #AutonomicDysfunction #LivingWithPOTS #posturalorthostatictachycardia

    My neurologist suggested that I start to take a stimulant . We will be discussing this at an appointment tomorrow. I have started having some mild to moderate success with propranolol and Midodrine.
    I’m afraid to mess up my little progress.
    Stimulants seem counterintuitive.
    At my last appointment I had a difficult time sitting up and breathing....lol
    For a bit of perspective I have known my neurologist for years as I worked underneath him as a nurse in the hospital . So he well knows what I used to be capable of.
    Please share your thoughts and experiences .
    #PosturalOrthostaticTachycardiaSyndrome

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    A year ago today - My #Flashbackfriday

    This was my Instagram post just a little bit ago. Thought I might share here for all my fellow warriors in case you need a bit of hope today.

    Here is my #fbf .

    —————

    The start of my journey after diagnosis came one year ago, thanks to many, including @malsawareness - Thank you. I can’t believe how much has happened since then. Diagnosis, diagnosis confirmation, trips to meet surgeon and have a block performed, (which for anyone reading, they asked if I was nauseous, and I said no, and then looked at my mom, and said, “*That’s* what nausea feels like? I feel nauseous 24/7.” I didn’t realize I was until I wasn’t. I also ate more and faster than usual and was seeing stars so much oxygen was getting to my brain.) and just a few short months later, surgery with that same doc. Recovery is still hard, and I am still trying to piece together what is improved from surgery, and what is other conditions. But about 6 months after surgery now, and I don’t regret it a bit. #NoFilter #nofilterneeded #forreasons #likeawesomeness #Flashbackfriday

    (And, yes, I use a lot of hashtags. A new one I should add, #hashimotos.)

    #chronicbadass #Fibromyalgia #fibrowarrior #posturalorthostatictachycardia #PosturalOrthostaticTachycardiaSyndrome #PCOS #PolycysticOvarianSyndrome #Hypothyroidism #ist #InappropriateSinusTachycardia #InvisibleIllness #InvisibleChronicIllness #ifight #iwin #BeBrave #Dysautonomia #autonomicnervoussystem #rosecea #Gastroparesis #ehlersdanlossyndrometype3 #MedianArcuateLigamentSyndrome #nutcrackersyndrome #IBS

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    This is Me

    Sea breeze in my hair as I ate fish and chips on the dock..... You’d never know this was my first “major” outing after spending just shy of a week in hospital for open surgery, and being discharged this past Wednesday. It’s the little things, like the baggy clothes I had to go out and buy because nothing I packed fits from the bloating post op. The hospital band and “allergy” band still on my wrist. The visitation sticker from visiting one of my “surgery buddies” who got bumped to this week instead of this past week. The anti nausea patch behind my ear. The meds in my system, and my mom’s phone going off that the pharmacy in her purse that was filled at discharge needs some dispensing. The little “Zipper Buddies” stuffed fox I got for me and my surgery buddies clutched tightly to my chest to hold my incision in case I cough or sneeze or laugh. This is the face of someone who is fighting. It’s a long recovery, but I have been blessed with magnificent doctors, and an amazing new set of friends going on the same journey, and we are figuring this out together. From walking the hallways hunched over in walkers in pain from the 5”-ish long incision, to standing straighter day by day, and trying to breathe through the pain, as we shuffle in our “fall risk” grippy socks. And this surgery only tackles one diagnosis. But I’m just gonna keep shufflin’ in my grippy socks that say “Slay” on the bottom, and live up to what they say. This is what rare looks like. This is what MALS looks like. This is what chronic illness looks like. This is what one semi good day looks like. This is what I look like. #filter #filterneeded #forreasons #likeawesomeness #mylightingsucks #ChronicIllness #chronicbadass #Fibromyalgia #fibrowarrior #POTS #posturalorthostatictachycardia #posturalorthostatictachycardiasyndro me #PCOS #PolycysticOvarianSyndrome #Hypothyroidism #ist #InappropriateSinusTachycardia #InvisibleIllness #InvisibleChronicIllness #ifight #iwin #BeBrave #Dysautonomia #autonomicnervoussystem #rosecea #Gastroparesis #ehlersdanlossyndrometype3 #MedianArcuateLigamentSyndrome #nutcrackersyndrome #IBS

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