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 and 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 learnt 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 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 :P).My hair is long and thick ad 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 whilst 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 out 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 improving 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!
Other Great Ideas From Readers:
- Katherine on Facebook said: ‘I would add a bar stool for the kitchen. I wouldn’t do without mine!’. I actually have a little one on wheels on my christmas list! However much I enjoy cooking it is sometimes the last thing you feel like doing when you’re feeling rubbish at least being able to sit down whilst prepping and cooking would make it so much easier! Great Idea Katherine, Thank You.
- Scott on Facebook said: ‘I would also invest in an Ipad/tablet and Netflix as you’ll be spending a lot of time lying down or in and out of A&E in the beginning so you need something that helps pass the time.’ This is another great idea! fortunately I had entertaining flatmates to get me through my first couple of long A&E visits but I also spent the first few months in bed watching a lot of Netflix (Every series of Merlin and Ratatouille on repeat to help me sleep, random I know) so put a netflix gift card on your list! When I was recently in hospital for my ICP monitoring books were great, I read Giovanna Fletcher’s ‘You’re the one that I want’ in 2 days, but in the beginning I found it way too difficult to concentrate on a book but if you can handle it get some good ones on your list too. Thank You Scott!
Happy Holidays Everyone and Here’s to a happy, as healthy as possible, New Year 2017!
If you have some even better things to add to the list that have helped you put them in the comments below and I will add them 🙂