What is POTS?
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| When I stand up. |
This is a question I get asked above all others. Postural Orthostatic Tachycardia Syndrome (or just POTS) is a chronic illness that is completely life-altering. In short:
Postural - Body Position
Tachycardia - Increased Heart Rate
Syndrome - A hell load of symptoms
In simple terms, your autonomic nervous system isn't normal and you feel a hell of a lot better lying down, than standing up. Of course, there are days when you feel bloody awful doing both...that's just one of the joys of POTS. The nervous system controls your heart rate, blood pressure, digestion, bladder control, sweating and stress responses; so basically most of the time your heart's pounding, your blood pressure's plummeting, your stomach's hurting, your bladder's bursting, your uncontrollably sweating and you're a stressed out lunatic...and that's a good day. And boy, have I learnt the hard way that's a good day.
Bad day? You can't get out of bed. You can try, you'll probably faint. If you don't faint, by the time you get to the room you wanted, your brain fog will have kicked in and you'll have no idea what you needed. If you don't forget, your chest pains will probably be so bad, you'll have to sit back down instantly. If you haven't got chest pains, you've probably got a headache so painful that it's difficult to keep your eyes open for more than a few seconds. I have bad spells where for a few months, 7/10 days will be bad ones. I'm in one of those spells at the moment.
You can get POTS mildly or severely. You can get POTS and still lead a "normal" life. Or you can get POTS and end up needing a wheelchair. At the stage I'm at, I'm closer to the latter. 4 years in with POTS and it's getting harder, rather than easier. The worst thing about it, is it's unpredictable. You can be fine one minute and the next, you're bed-ridden for days on end, going stir-crazy.
When I'd been diagnosed, I wish there'd been a blog post like this. I sat and cried for hours and hours, feeling completely alone because honestly, you'll know more than 99% of doctors about this condition. You'll get misdiagnosed for years, they'll make you think you're going crazy, you'll give yourself mental health problems because you know there's something wrong with you and no one will believe you. Ask for a tilt test, ask for an ECG, ask for an echo, ask for a holter monitor; make yourself heard, you'll get there.
You also can't sleep, or drink, or eat. Okay, you can do all three but when you first get diagnosed or you're having a down day, you'll be so angry, it feels like you can't. You can sleep, but only for a few hours a night. You can eat, but you need to eat little and often or you'll feel like crap (and make sure you add loads of salt). You can drink but nothing remotely interesting, unless you want chest pains and palpitations. Me? I can't drink alcohol, zilch. I can't drink fizzy, maybe one on a good day. Caffeine? Long distant memory. Milk or water for me, please.
Your life sucks. I'm not going to lie, if you compare it to the life you once had, it does. You can't do half the things you used to do. A simple walk to the shop and you feel like you've run a marathon and you're ready for the third nap of the day. But don't nap they say, it's bad for your body. Well, my body isn't doing too bloody great as it is, so think I'll enjoy a nice nap. Gets to 10pm...you'll regret the naps but trust me, there are days when it's virtually impossible not to nap.
General symptoms. I've mentioned a few and this is not an extensive list, by any stretch of the imagination but here's a few:
- fast heart
- low blood pressure
- tiredness/fatigue
- sweating
- dizziness
- fainting
- brain fog
- chest pains
- nausea
- headaches
- sleeping problems
Here's the really difficult part; the hardest part for me. The people in your life will get used to this new you, even if you haven't. My friends? They're used to me never being able to go out. My family? They're used to my heart racing and me being in pain most of the time. What they won't understand is, you're not. I don't think I ever will be used to it. I still want people to be asking me, "how are you feeling?", "do you need anything?" etc, but there gets to a point where they won't because they think you should have accepted what you have by now and learned to live with it. Or if a symptom flares up and you're out, they might pretend it's not happening because it ruins their fun. I understand guys, I do...it's a bloody nuisance for me too. But please don't pretend it doesn't exist, I'm still adjusting. Yes, after 4 years, I'm still adjusting to what this has done to my life.
I'll get angry at you for drinking alcohol around me when I can't, I'll get angry at you for being able to work full-time when I can't, I'll get angry at you for going out for a evening stroll when I can't. It doesn't mean I love you any less but it's hard not being able to do the simple things that every person you know in their twenties is doing around you. Especially if you moan about it. When I see the 10th Facebook status of the day with someone complaining about work when you're cooped inside unable to get out of bed, it's enough to make you scream.
Being 23 and practically house-bound is a life you never envisage for yourself but it isn't all bad. You get out of household chores, you don't have to cook, you get a lot of love, you appreciate the little things in life and you're far more grateful for the things you have got. Yes, bit of a sucky deal when you realise how much freedom and choice has been taken from you but make sure people give you time to adjust and more importantly, make sure you give yourself time.
Remember, it might not get easier but your coping strategies will. So when you're going through hell, keep going. And on that note, I'm off for a cry and a cup of tea. If you've made it this far down the post, I bloody love you.
Zoe x
Thank you for sharing this, it's important to have information out there for people so they don't feel so alone. You do so much with blogging and vlogging despite this, so feel proud! xx
ReplyDeleteThank you so much for reading this and saying such lovely things; it really means a lot. Definitely feeling proud xx
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