Okay so just a week ago it was cold enough for frost (stupid English weather and climate change- May should NOT be that cold!!!) and now it's like it should be- hot and sunny and lovely.
Okay, actually hotter than ideal for me but that said I do better in the heat than cold. I can sit under a parasol or in the shade if it's too hot, but I get to be in the garden, which I love.
So, this past weekend was really nice. POTS wise, I am feeling stronger. I still get symptoms of fatigue and dizziness but I don't feel as weak as I did in Autumn/Winter when I had my 'crash'.
Things between me and my bf are great too- I think he is learning about it more as I am learning to be more open and admit when I feel bad instead of trying to cover it up and push myself through it when that can make me feel worse.
Planning moving in together is exciting and I can't wait til he gets the keys and we can start decorating the place and making it OUR HOME.
Oh, and I can apply for the graduate teacher program in July. It sounds sooo hard and complicated to get into. Competition is fierce and given that I've never worked, I'm not confident about getting in. But at the moment I have this feeling that 'anything is possible' and so I figure that even if I don't get accepted, I can get a job in a school as a teachers assistant and work my way up to the higher level and then re-apply for the GTP and THEN I might get accepted after having some experience of actually working in a school. (It does say priority is given to support staff in schools- I've done that for years but only on a voluntary basis so not sure how they will view that).
I'm trying liquorice root at the moment as I've read a number of anecdotal reports of how it's helped POTsies, and I feel so much better to not be in a drug induced haze of fatigue that I'm hanging fire before trying another pharmaceutical, especially as it's another usually prescribed for low blood pressure with effects of lowering heart rate also. I'm going to see if the liquorice helps with fluid retention and raising bp (as it's meant to) and see if that has any difference on my hr. If not, well I'll introduce the diltiazem as well. I'm just concerned about taking that in case it could reduce the strength of my heart over time- and that's if it doesn't send my bp way too low again and give me that rotten fatigue like I felt on the BBs.
I soooo need to tidy, my room looks like a bomb has hit it as I started taking clothes out of my wardrobe to give to charity and then my bf rang me and once I stop an activity, I lose my energy and then can't get started again so right now there are clothes and coathangers everywhere and I don't currently have the energy to clear them away! Hopefully tomorrow.
I can't understand why I can't keep things tidy when I prefer things to be tidy, and it would make life sooo much easier because then I wouldn't have to keep doing these big, energy draining clean ups!! I am hoping when I've cleared away a lot of stuff I'll have more space to keep things in order. Practice for moving in with my bf who is so tidy his idea of 'mess' is a newspaper on the table and a drinks mat not put back in its holder. :/
"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!
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