So if all goes as I hope tomorrow, this could be my last post as an undiagnosed Potsy. I'm as sure as I can ever be that I have POTS. All my self tests have shown a hr increase of 40-50 bpm in 3-5 minutes of standing. I just need to have it confirmed medically now!
I feel like I am coming down with a cold though. I'm hoping it's just spring allergies but can't be sure, as I have been SO busy and really pushed myself, and this is what tends to happen when I do that, I just get some kind of common ailment, like a cold or sore throat, grrr!
Today was a lovely day, warm and sunny, I went over to Lee's and we spent time sitting in the garden together relaxing, it was so nice. I'm going to miss him while I'm away, but I am ready for a holiday- the sun and relaxation does me good. I've been waiting so long for this appointment, but the worst part of it wasn't feeling so weak and so ill, it was the fear I had that it would come between me and Lee (since it was only early days when I started flaring up again) but he has been fantastic since I explained everything, really caring and supportive. So that has helped me get through these past few weeks of waiting for this appointment!
I just hope I get my diagnosis tomorrow. I will be happy to be told I have POTS because then, at least I have a reason for all my symptoms, at least I KNOW for sure and certain what I am dealing with. Then I can concentrate on spreading awareness and hope, because no matter what I am going to make something positive from this. I believe everything happens for a reason, and perhaps the reason dysautonomiacs are such good, strong, kind people is because we were brought to it to help spread a positive message of hope and reassurance to anyone suffering with it and other rare illnesses.
Even if I didn't get the POTS diagnosis though, I still think my IST is a form of dysautonomia, so I'd still make sure to be part of the dysautonomia community and help with spreading awareness and hope. But to be honest, I'd be SO surprised and shocked if I didn't get diagnosed with POTS. I mean, every time I checked out my own heart rate it did what it's gotta do to get the diagnosis, and that was without all the fancy stuff like beat to beat blood pressure monitering etc.
I just hope that I find out tomorrow, and soon tomorrow, so I don't have to be in the dark for too much longer.
I'll report back when I can!
"I can live my life with this condition and make it a damn good life, full of great times- the stuff of wonderful memories, so when I'm old in my rocking chair looking back at it all I can think DAMN. I lived WELL. Oh yes. That I will do, no matter WHAT." ~ Me, Jan 11, 2010.
I thought it was the dish that ran away with the spoons?
Well, in the nursery rhyme it is but for me it's POTS!
Click this for an explanation of POTS
And this for an explanation of SPOONS
Click this for an explanation of POTS
And this for an explanation of SPOONS
About Me
- Laura
- United Kingdom
- I love photography, nature, the countryside, spending time with my boyfriend and my friends, fun, laughter and dancing.
Dysautonomia Demystified.
Dysautonomia is a dysfunction of the autonomic nervous system. The ANS controls all the things you don't think about, like digestion, body temperature, blood pressure, heart rate.
The form I have is called "POTS".
"POTS" stands for "Postural Orthostatic Tachycardia Syndrome" which in simple terms is rapid heartbeat when standing.
That's only one of the symptoms. It's called a 'syndrome' because there are a vast array of other symptoms involved. Because it's a disorder of the ANS, anything which that controls can malfunction.
The symptoms I personally experience are:
*Fatigue: POTS can be draining and even debilitating as it takes 3 times as much energy just to stand up when you have it, therefore doing every day things is like running on the spot all the time- if an ordinary person did that, they'd be tired! That's the reality of living with POTS- you have no choice- you can't "stop running" because your body is keeping you 'running' (physiologically) all the time you are standing.
*I also have Inappropriate Sinus Tachycardia, which is a speedy heart rate all the time, even when I'm 'resting'. This means that for me, even sitting down is like jogging on the spot, or doing star-jumps. Basically, it's like my body never truly gets to rest. So I'm pretty much always tired!
(Check out The Spoon Theory for a good explanation of what it's like living with limited energy and having to forward plan everything to make sure you don't leave yourself short).
*Overactive Bladder (nervous system controls it, nerve signals aren't working right)
*Excess Thirst/Dehydration (if ever I find out why I have this, it'll be a miracle!)
*Migraines, or if not migraines, certainly frequent headaches.
*Neck and back pain
*Muscle aches/joint pain
*Brain fog- which makes a person forgetful and slow in their thinking, have difficulty accessing information stored in the brain, e.g. difficulty finding the right word, finishing sentences, remembering what to do and how- it's like having senile dementia; I joke about the dozy things I've done because of it because you have to laugh, otherwise you'd cry! Having an illness that disrupts your whole body is one thing, having it try to take your mind as well is another.
*Gastro-intestinal problems- bloating, reflux, feeling full quickly
*Disturbed sleep patterns (aka not sleeping well and also not feeling as if your sleep is restful even when you do).
*Involuntary muscle jerks when I'm trying to relax/sleep.
*Feeling as if I can't get enough oxygen, even though I'm breathing fine (very weird).
*Fidgety, always 'wired' feeling (makes it hard to truly relax)
*Feeling overstimulated easily
*Not being able to stand still for too long, due to excessive heart rate climbing higher and higher, which makes me feel physically 'stressed'.
There's possibly more but brain-fog makes one forgetful... I think that's enough to paint a picture anyways!
The form I have is called "POTS".
"POTS" stands for "Postural Orthostatic Tachycardia Syndrome" which in simple terms is rapid heartbeat when standing.
That's only one of the symptoms. It's called a 'syndrome' because there are a vast array of other symptoms involved. Because it's a disorder of the ANS, anything which that controls can malfunction.
The symptoms I personally experience are:
*Fatigue: POTS can be draining and even debilitating as it takes 3 times as much energy just to stand up when you have it, therefore doing every day things is like running on the spot all the time- if an ordinary person did that, they'd be tired! That's the reality of living with POTS- you have no choice- you can't "stop running" because your body is keeping you 'running' (physiologically) all the time you are standing.
*I also have Inappropriate Sinus Tachycardia, which is a speedy heart rate all the time, even when I'm 'resting'. This means that for me, even sitting down is like jogging on the spot, or doing star-jumps. Basically, it's like my body never truly gets to rest. So I'm pretty much always tired!
(Check out The Spoon Theory for a good explanation of what it's like living with limited energy and having to forward plan everything to make sure you don't leave yourself short).
*Overactive Bladder (nervous system controls it, nerve signals aren't working right)
*Excess Thirst/Dehydration (if ever I find out why I have this, it'll be a miracle!)
*Migraines, or if not migraines, certainly frequent headaches.
*Neck and back pain
*Muscle aches/joint pain
*Brain fog- which makes a person forgetful and slow in their thinking, have difficulty accessing information stored in the brain, e.g. difficulty finding the right word, finishing sentences, remembering what to do and how- it's like having senile dementia; I joke about the dozy things I've done because of it because you have to laugh, otherwise you'd cry! Having an illness that disrupts your whole body is one thing, having it try to take your mind as well is another.
*Gastro-intestinal problems- bloating, reflux, feeling full quickly
*Disturbed sleep patterns (aka not sleeping well and also not feeling as if your sleep is restful even when you do).
*Involuntary muscle jerks when I'm trying to relax/sleep.
*Feeling as if I can't get enough oxygen, even though I'm breathing fine (very weird).
*Fidgety, always 'wired' feeling (makes it hard to truly relax)
*Feeling overstimulated easily
*Not being able to stand still for too long, due to excessive heart rate climbing higher and higher, which makes me feel physically 'stressed'.
There's possibly more but brain-fog makes one forgetful... I think that's enough to paint a picture anyways!
No comments:
Post a Comment