Comments on: Pins, POTS, and Procrastination

By: Susie

Susie — Wed, 05 Dec 2018 01:30:06 +0000

In reply to Lisa. Taking care of yourself is the exact opposite of failure. Hope today is a better day.

By: Lisa

Lisa — Fri, 25 May 2018 13:57:04 +0000

Just reading “some days are worse than others” was what I needed to hear. Recent POTS diagnosis, but misdiagnosed as migraines as a teen, and today is a bad day. I’m trying to not feel like an inconvenience or failure. I’m a teacher, it’s graduation day, and I have so many things I should be doing. Instead, I’m laying down in the nurses office. Anyway, thank you for sharing!

By: Cheryl

Cheryl — Tue, 05 Jul 2016 01:12:40 +0000

Thanks for the article! I found you by following links left in other articles. This particular post is striking a chord with me. I have always hated standing, and upon exercising would get a bounding pulse. I just did an experiment. Sitting down working on the computer, my resting heart rate was 62. I stood up, waited a few moments, and then just while standing my heart rate jumped to 87. I think I’ll be getting this checked out. Thanks!

By: Susie

Susie — Tue, 12 Apr 2016 20:57:08 +0000

In reply to Hannah.

Yes! I have to lie down several times during the day and I need anywhere between 8-12 hours of sleep. I’ve heard it described that because of high heart rates whenever someone with POTS is standing it is the same as if they are running in place- so it’s no wonder that we are tired all the time! I’m not anemic- my nervous system just doesn’t quite know what to do with itself :) I definitely don’t keep up with others in my age group, but at this point I’ve accepted it and I’m used to it. I’ve tried different meds and lifestyle changes to increase energy but it continues to be one of my worst symptoms. I think it’s pretty typical with POTS. You should check out the facebook group called POTS- I’ve learned a lot from talking to different people there and hearing about their symptoms.

By: Hannah

Hannah — Tue, 12 Apr 2016 19:48:08 +0000

Hey! I have POTs too. I was wondering how the fatigue affects you. I’ve been anaemic twice but having iron doesn’t make much of a difference. The last time I started getting an episode of severe fatigue, I got checked but I didn’t have anaemia. I’m getting another test of anaemia after I slept for about 15 hours straight, two hours before I even went to bed and was tired the next day. The doctor thinks I’m not anaemic though.
I’m wondering if my POTs is affecting me more than I realise and causing my fatigue. I’m so tired and I’m pale with bags under my eyes – I actually do look ill! I have one good day but have to recover the day after, I feel like an old lady.
I’ve just had work (I don’t do many hours), only four calls from 4:30 – 6pm and they’re easy ones. I started feeling tired after my second call, like I immediately needed to have a nap and I got a headache. It’s just not normal. I’ve had a week off (which killed me as I was celebrating my 21st) and today I was relaxing all morning, yet a tiny shift knackered me out! I have three days free (tomorrow’s cancelled!) and I’m so glad because I literally will sleep and relax. I don’t do the normal things that you’d expect of a 21 year old.
Does this sound familiar to you?

By: Lauren

Lauren — Thu, 18 Dec 2014 00:30:44 +0000

I just came across your blog through Facebook. I also suffer from POTS, along with several other chronic problems. I am really enjoying reading your posts. I can definitely relate.

By: Christina

Christina — Sat, 21 Jun 2014 00:07:43 +0000

Thank you so much for writing this, as well as for your “things to say” and “not to say” to people with a chronic illness posts. I can share these with friends and family in the hope that they might better understand and see that I’m not crazy or the only person experiencing the symptoms under the POTS umbrella. I am also glad (and yet not glad, for obvious reasons) to find someone with similar symptoms as me openly talking about them.

By: Tracy

Tracy — Mon, 19 May 2014 23:10:49 +0000

Thank you for sharing your story. I found some similarities between the symptoms you listed (dark under eye circles, dizziness, trouble regulating body temperature, headaches, low blood pressure, fatigue) and what I experience. I’ve was diagnosed with Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Degenerative Disc Disease (DDD), but some of my symptoms don’t fit into any one of my diagnoses so I’m going to research POTS a bit more and talk with my doctor about it.

I really like the spoon theory because it explains, fairly clearly, what those of us with a (or a few) chronic illness go through each and every day. You don’t just jump out of bed and run to the bathroom. I literally have to get up more than an hour (15 – 30 min on good days) before I need to get in the shower because it can take me that long to wake my mind and body. I’m not sure the spoon theory really explains very well how much our condition(s) can vary from one day to the next. I don’t know how many times someone has said to me, “But you could do it last week, why can’t you do it now?”, and I have to explain to them that some days I can walk for an hour, maybe even two, and other days I can barely walk for 10 minutes at a time. How do you explain that to someone so they understand? Anyone other than my family (and even some of my family members) and they look at me like I’m lying. I don’t have a lot of friends because people aren’t nearly as understanding as I need them to be because I have to cancel plans at the last minute sometimes because I’m just not feeling up to it. I’m very happy to have such a wonderful and supportive family. I feel for those who don’t have either.
Thanks again!