7 Things to Put on Your Holiday Wish List If You're New to POTS
Last Christmas my postural orthostatic tachycardia syndrome (POTS) was at its worst. (Not that I even knew what POTS was at that point, let alone that I had it.) I knew I had something wrong with me — I was so dizzy all the time and was so weak, I couldn’t even walk upstairs without getting out of breath and my heart rate would jump up to crazy levels every time I moved. Once I got diagnosed in March, it all began to make sense and over the last nine months I have learned about all the little things I can do to help improve my condition and lessen the likelihood of major flare-ups. These are some of the best things I own that help me on a day-to-day basis that any new POTSies should have on their Christmas list. The holidays are a difficult time to be managing any chronic illness hopefully these will make the new year a little easier. I wish I’d had many of them earlier:
1. A shower stool
My mum got me this for my 21st birthday and as she put on the tag it was “a very strange shower-stool 21st birthday present” but it was probably the best and most useful present I got. It was on my list and it was on there for a reason and it has really helped me. POTS symptoms can be made worse by heat, standing and having your hands above your head. This makes showers really hard work. As well as palpitations, I get awful blood pooling in my feet which is really uncomfortable, my feet are often purple and red blotches can rise all the way up my legs. Having a shower stool takes away the standing element and although I still get a little pooling in my feet it has really helped me shower more confidently and independently.
2. A hairdryer stand
This was one of the first things I bought to help counteract my POTS, mainly because I was sick of my boyfriend’s awful hairdressing skills (bless him, he tried.). My hair is long and thick and takes ages to dry at the best of times, so this simple gadget has helped immensely. Again, the mixture of heat and holding something heavy above your head can make you really symptomatic; when I was at my worst it was literally impossible so I bought a stand to hold my hair dryer so I can dry it hands-free and it makes life so much easier and less symptomatic. I no longer dread washing my hair.
3. Handbag/pocket sized salt
My stepdad got me an amazing little salt pot that fits neatly in the pocket of my handbag when I was first diagnosed and it’s great if you need to add a little salt to your food while you’re out and about and there’s none available. It may not be suitable for everyone with POTS to add salt to their diet, so speak to your specialist about it.
4. Blood pressure monitor
Blood pressure medication can be key to helping with some people’s POTS symptoms, but after getting it prescribed, many people are left to titrate it up on their own. If you have a blood pressure monitor it can give you a good idea of what is normal for you and you can tell if something is helping/changing or not. Also many people’s blood pressure readings aren’t accurate when they see a doctor, as stress or anxiety can boost blood pressure. If you can get more accurate readings at home and directly relate them to symptoms, you can show these to your doctor and they can have a better idea of what it is like day-to-day. In my experience, blood pressure monitors also have much more accurate heart rate functions than smart phone apps or fitness watches.
5. A good water bottle with a sports cap
Hydration is key when it comes to POTS. It’s the closest I get to feeling like a mermaid
with the amount of water I get through. When I’m feeling at my worst, a bottle of water is a big rescue. Normally a glass or open-top bottle is fine, but when I can’t do anything but lie flat, the sports cap is really important so I can stay hydrated when I just can’t get up.
6. Compression sock or tights
These may not be the most comfortable and they are really difficult to get on an off especially if, like me, you also have EDS. But they do help improve the blood flow in your legs and can improve your symptoms. They’re also a good extra layer on freezing cold days.
7. A handheld battery-powered fan
Now I know this isn’t going to help right now because it’s already cold outside but you’ll thank me when the summer comes around again. This summer I had finally got the balance of my medication right but then the heat hit and I was pushed two steps back. So be prepared and have it early to survive summer 2017!
Happy Holidays everyone and here’s to a happy, as healthy as possible, New Year 2017!
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
Follow this journey on Invisibl3Girl.
We want to hear your story. Become a Mighty contributor here.
Lead photo by Thinkstock Images