Chronic Illness Weekly: What Day Is It? + POTS vs Heat & Blue Badge Stress || Week 119
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- Опубліковано 22 вер 2024
- This week on Chronic Illness Weekly is a bit of a rollercoaster as we continue living through these strange times where we are stuck indoors. After over a month it's clearly affecting me more than I realise as I long to escape these 4 walls. After a rough start to the week by Wednesday I've got my makeup back on and my mood improves but as the weather changes so much my POTS starts to flare and when I find out that renewing my blue badge is going to be harder than I thought a few tears appear. But I end the week with a busy day .. let's see what next week brings.
Chronic Illness Weekly is, you guessed it, a weekly vlog showing you my life with Chronic Illness. I share my experiences with Ehlers Danlos Syndrome ( EDS ), Postural Orthostatic Tachycardia Syndrome ( POTS ) and Chronic Migraine. I fight chronic pain and fatigue and many other symptoms on a daily basis but I try not to let it stop me.
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🎼"HAPPY BIRTHDAY TO YOU" 🎶
as sung by Top Cat & his Feline Friends! Made me smile
Hey Jenni,
I saw you posted this video and I had to watch it after reading the title. I have been diagnosed with POTS for about 5 years now, and I just want to say hearing about your week has just helped me SO much. It has helped me realize I'm not alone in having bad days even though it feels that way. Thank you so much for posting this! You have helped me and are a truly stellar human being. Hang in there and keep your head up. We've got this. 💙
From one POTShead/spoonie to another,
I wish you to have all the spoons necessary to simply have a day.
Alexis
Awww Alexis thank you so much for this lovely comment! You're definitely not alone in this! I've got some specific POTS/ Dysautonomia videos on my channel and I also run a small facebook support group for other spoonies all the links are in the description if you fancy joining.
Spoons & Love, Jenni x
What day is it is now my most commonly used phrase!! These are such strange times. I really feel for you stuck indoors, its so hard. Im stuck indoors but for different reasons, my anxiety is just too painful to attempt going out any more! I wait till the bf is off work and then he's my support to get me out! Routines are so important right now, especially because all our usual routines are gone. I have a stable morning and evening routine which I am very grateful for as they are one of the few things that have remained the same in this madness. Anyway, Ive waffled, new to your vlogs and just wanting to wish you much support, love, and solidarity! Stay safe
It's very bizarre things that are keeping me vaguely on track 😂 I think routine is definitely the key to this and I hope I can find one soon! Thank you so much Finn! Spoons & Love and keep safe too xxxx
So glad to see you at least looking brighter. Hang in there darling, we’ll beat this ruddy virus between us. We are Guides, after all! xxxxxxxxx
Haha fingers crossed it wont be long! x
I love this video! Sending you much love. Stay strong! You’re gorgeous!!❤️❤️
Aww Thanks you so much! You too!
Being disabled is a full time job that is harder than when I had my garden center in Texas. It seems unfair because we’ve already drawn the short straw as far as our bodies. It’s awful scary when it becomes apparent that your independence is threatened. Many of my friends and family try to understand but they really don’t get it. I hate having to ask for help from anyone. That’s my biggest topic with my psych counselor. It is such a pain with EDS and MAST Cell disorder because the “rules “ always change and it’s so hard to prepare for. Well hugs and many spoons to you!!!!
I think that's one of the biggest problems is conditions like this are so variable and the forma aren't made for that! Thank you as always Gordon!
My heart really goes out to you. My daughter was diagnosed with POTS, Ehlers-Danlos, Fibromyalgia, hyper-mobility and Chronic Fatigue just last October. Suffering for the last two years, she is still learning and trying to get a grip of this debilitating illness. Your videos really resonate with what she is experiencing. She was about to start physiotherapy this month and was receiving acupuncture treatment, which has come to a halt due to this lockdown and she is really struggling with it all. She is trying to get through her final six weeks of Uni (obviously online) to get her degree in Policing, which has been a real battle and would be such an achievement if she could just get through these next few weeks. Any advice or tips would be greatly appreciated.
Aww Thank you Tania. So sorry your daughter is going through all that especially during these crazy times! Uni wise in the last few weeks it's just a case of giving your body as much as you possibly can to rest so you can do the best work you can just focusing on the basics of eating well, sleeping as well as possible and staying hydrated ( If you look back to last year you'll probably find this is highly hypocritical) and focusing all the energy you do have on the work. If either of you have any more specific questions please drop me an email at chronicallyjenni@gmail.com. I also run zoom support group meetings which are most young women who are at uni or recent grads with EDS so she might like to come and say hi. Next one is tomorrow night at 8pm UK time x Sorry I cant be more helpful xxx
Jenni I literally just had to re-apply for my blue badge too & I found it so annoying and stressful too, so many steps!!
I’m so sorry you’ve had to do it all lovely, hope you’ve got it all sorted now- would’ve done it on FaceTime with you if I had known haha, could have done it together and made it slightly more bearable 😂😅 xx
I still haven't done it I just got too stressed need to get back to it. It's so hard to know what to put when your condition is so variable.
Plus we should definitely have a facetime catch up regardless!
Quick note have you registered with your elect gas, water people, they like to know it there is at risk, disabled etc people, they check on you when there are problems, and if they can move your lines up the list of the order in fixing problems.
Thanks for the tip Roger I haven't done that but definitely would if I was living on my own.
@@ChronicallyJenni you can register even if you live with your parents etc. I have because of my health conditions. You get priority switch back on of gas and electric or they have to provide you with alternative means, and the water people have to provide you with bottled water
You've only got some "Bits" done? What happened to the "Bobs"?