Let's Talk about Chronic Illness Flare-Ups - Ehlers-Danlos Syndrome, POTS Syndrome

Рет қаралды 1,778

3 жыл бұрын

Let me know if you experience something similar, or even an entirely different flare-up! Thank you so much for watching my loves - I hope you're all well x
Don't be a stranger: 😎
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Who I Am*
Hi there, my name is Jen. I have a pretty long history of mental illness, physical illness, and recovery. For a long time, it was hard for me to feel joy or have the energy to even have a routine or be productive! Now, I'm seizing life.
For a long time, I have waited for the world to give me, a spiritual Irish gal, a platform. I have created scenarios in my head where I offer the knowledge I have from my unique experiences to a world that never asked and they are somehow appreciated? Well, today I give up waiting 💕 Now, I'm going to be proud that I welcomed myself to the world of KZfaq and living my spiritual practice out in the open 🌟 Join for content to do with writing, chronic illness, and routines.
I hope to encourage you to take an honest look at your lives, as I examine mine, and imagine what is left to transform into utter magnificence 🙃
With love, Jens x (My Nan calls me Jens, it's my favourite)

Пікірлер: 36

@sarahjensen2473 3 ай бұрын

Thank you for this, so much! You just made sense of something that I've been dealing with for 40 years. My doctor gave me almost no information, and none of my research has been as informative about the way this actually impacts us. ❤

@jenniferpoyntz 2 ай бұрын

Oh my heart swelled so much reading this! I am so sorry that you have suffered. I'm going to make an updated video soon, and this has made me feel like it's worth it to keep talking about this stuff.

@pokeystar1980 8 ай бұрын

There's no comfortable place to be in the world for my body or my mind. Wow you said it so well. I thought my baby keeping me up at night was the reason, but my hip pain is. My wrist subluxes when I pick him up too. But only at night when I'm extra tired thankfully.

@jenniferpoyntz 8 ай бұрын

Thank you so much sharing. It's actually something I've thought about a lot regarding having children in the future - I don't know how my joints would hold up! I am thinking of you and with you in spirit.

@senttosoar 8 ай бұрын

@jenniferpoyntz I know we're all different with how our symptoms manifest, but I've been blessed to successfully carry and deliver 3 lovely children with EDS! I had 4 miscarriages at first with no understood reason, but I was able to carry my babies to term after those. My first pregnancy was a breeze, but the labor was longest (which is actually quite normal). The subsequent pregnancies got harder and harder on my body to the point where we decided on permanent birth control so I wouldn't need to carry again. Buuuut, with those last two births, the labor and delivery kept getting easier! My first labor was 27 hours, second was 6 hours, third was 3.

@jenniferpoyntz 8 ай бұрын

@@senttosoar God, thank you so much for that. This is a genuine fear of mine. I struggle with basic daily tasks and wonder how I am ever meant to support another person, so it's exceptionally important and grounding to hear your experience. I am so glad you had your wonderful babies - and that you've shared with me.

@koalabluebearjacinta5927 4 ай бұрын

I am 50 and have HEDS. I am in remission from severe migraine and POTS. I no longer have migraines often. I went into remission from them when I stopped my high stress job. I have also gone into remission with fasting and prayer. I consumed bone broth in the fast. I broke my spine at 16 from EDS so I understand what it is to be young and frail and young and strong. I guess my best advice is to push yourself within very adaptable boundaries. Pace well. I am currently struggling with ankle subluxations so cannot walk the distances I could a few months ago. So I try to get in a pool. I try my best to focus on what I can do. Ie I can drive bc I don’t have migraines. So I’m very grateful. I pray that you can find comfort in the love and support of others.

@conniegarvie 8 ай бұрын

I truly empathize with your struggles. I have hEDS, Hyper POTS, Psoriasis and Psoriatic Arthritis, Sjogren's Syndrome and Tortuous Esophagus. Currently I'm in a significant Sjogren's flare. I'm using rewetting eye drops almost every hour, my mouth is so dry that I couldn't talk if I wanted to. My joints are in a huge pain flare up. It's like that pain scale (rate from 1 - 10 just doesn't work anymore. My pain is in the teens, 14,15 or so. I am having terrible trouble swallowing and, unless my meal is all liquid, all my food gets stuck in my esophagus and just sits there. It doesn't get all the way to my stomach, so when I have to gag and bring it back up, it tastes the same as it does when it when down the first time! I frequently feel like I need to hibernate when I'm in a flare. I don't like to see other people, just my kitties and my caregiver. She's amazing and helps me get through the worst times. I hope that your symptoms will subside into the background again. Good luck P. S. I just subscribed to your channel! 🧑‍🦼 ❤️🩷🧡💛💚💙

@jenniferpoyntz 8 ай бұрын

Thank you so much for your comment! It was actually so fascinating to hear about your experience. I'm always struggling with dry eyes though I learned that this year it is because I have Adrenal insufficiency and it was caused by low cortisol levels. Medication has helped sometimes. I truly understand what you say about needing to not see other people 💙 I just can't sum up the energy to be 'on' when in a flare. Thank you so much for subscribing - I am thinking of you.

@saoirsedoherty1550 3 жыл бұрын

Jennn loved this ❤❤ I remember when I was first diagnosed I used to turn the shower on, try to get in and then turn it off and sit on the bathroom floor absolutely wrecked and catching my breath. Probably didn't shower for about two weeks, oh the joys of chronic illnesses 😅

@jenniferpoyntz 3 жыл бұрын

I'm sorry, I just love that, we were probably doing the exact same thing at the exact same time! Thank you for always watching, I love youuuu x

@saoirsedoherty1550 3 жыл бұрын

@@jenniferpoyntz love you 😘😘

@senttosoar 8 ай бұрын

Please know that it is so encouraging to me just to hear about your experience with flare-ups and EDS. I don't yet quite recognize when that happens in my life (I judge my body as if it didn't have issues, and then I wonder why my shoulders/neck/hips/ankles are in pain and feel loose or stuck for days at a time). I try to keep up with myself and be athletic, but I feel like I have to try really hard to get into a groove with stretching/bjj (I get headaches when I haven't worked out in a while and I start again) only to be disappointed when something happens, like when I recently messed up my upper hamstring doing a cartwheel and had to stop grappling and recover for months. Then I have to fight to get back into a regular routine....it's frustrating because I know I'm strong and capable, but my body betrays me 😑

@jenniferpoyntz 8 ай бұрын

Thank you so much for that comment. I am diagnosed so many years now, but I still resist my own exercise intolerance. When I've been unwell and can't exercise for a while, I go full throttle again and get so angry with my own limits and the inevitable headaches and aches. It's more than just frustrating - it can be demoralising. Thank you so much for sharing x

@jamiecollins5012 16 күн бұрын

Me too. Bad one today.

@jenniferpoyntz 8 күн бұрын

Wishing you well.

@evad15 5 ай бұрын

I have HEDS too. For me it starts with the fatigue. Often I think I just need coffee or that I need to eat a bit better. I usually keep going which leads to me pushing mast my limits. This leads me to getting even more tired to the point that I crash. At that point I cannot think straight, I cant do simple things like write an email coherently or make a shopping list. It feels like doing small tasks like washing the dishes takes too much effort. My whole body feels like its on fire. Wearing tight clothing or bras feels painful. My throat hurts and I usually get worse IBS.

@hstine27 16 күн бұрын

Try green tea instead! I had to quit coffee because of all the issues it causes. Hope this helps!

@miserablelife8728 8 ай бұрын

Hope to meet an angel like you lets stay strong soldiers

@daniellemoller7080 7 ай бұрын

It's also kind of stupid how with hEDS, you feel so tired after eating and want to lie down but then if you lie down you get reflux because you oesophagus just can't do peristalsis.

@jenniferpoyntz 7 ай бұрын

It’s absolutely frustrating - but what’s most frustrating is you can’t even be consistent in the direction of your frustration because the landscape of our health changes so rapidly 🙈

@daniellemoller7080 7 ай бұрын

@@jenniferpoyntz Very true!

@beverlyquigley6608 8 ай бұрын

I would describe it as walking through wet cement all the time. As a child, I would remember when I would lie down for bed at night, I would not get back out of bed until the morning. I didn’t realize until later in life I had POTS and now I think I have EDS from mom and passed to my son.

@jenniferpoyntz 8 ай бұрын

Wet cement captures it perfectly. It's a leaden feeling!

@toni5543 Жыл бұрын

Hi there. Im 27 and currently working with my doctor towards an EDS and POTS diagnosis. I am just coming out of a flare up. I was so exhausted and in pain that i cried so much. I was unable to care for myself. Now i know whats going on it makes SO MUCH SENSE. Ive had these flare ups all my lfie and just assumed i was sick and didnt know it 😂

@toni5543 Жыл бұрын

Oh also, I'm Scottish! Love to hear from a fellow celt 🥰

@jenniferpoyntz Жыл бұрын

@@toni5543 Hi Toni! Thank you so much for commenting, it definitely makes me feel less alone! It's crazy how many experiences we just chalk up to being something we have to get on with, isn't it? I hope your flare is over, and that you're resting!

@daniellemoller7080 7 ай бұрын

I have hEDS, POTS and Dysautonomia so I get lots of different physical symptoms during my flare ups. It depends a lot on the climate as well. The worst is the hives, night sweats (temperature dysregulation), fatigue from that, subluxating joints & general joint pain or sprains.

@jenniferoconnor4890 7 ай бұрын

The night sweats! Yes - I'm glad that someone else has mentioned this, I thought I was going insane.

@daniellemoller7080 7 ай бұрын

@@jenniferoconnor4890 It's probably the worst symptom for me. Sleep is so important so when you can't sleep well the whole body takes a hit.

@evad15 5 ай бұрын

I dont know if this will help any one but these are the items that have helped me and my HEDS: Low dose Naltrexone, Edibles right before bed, drinking tons of water with salt pills, compression socks (they make cute ones now), heat pads, having a stool I can take into the shower, and most importantly pacing pacing pacing!!!!

@jenniferpoyntz 5 ай бұрын

Since reading this, I've been wearing compression socks much more consistently and I agree, they are definitely the way forward! I also got a seat for my shower, which I knew I needed anyway but for some reason told myself it wasn't necessary. Thank you, thank you, thank you