Friday, 21 July 2017

How PoTS Affects My Life Every Day

Hi there!

As many of you who have read my blog before, you will know in amongst the whole array of conditions I suffer from is Postural Orthostatic Tachycardia Syndrome (also known as PoTS). You can read my story in reaching a diagnosis here if you haven't already. 

It was a long time coming, and possibly the only one out of all my chronic conditions that there was warning signs from very early on in my childhood that what I was experiencing with my heart and blood pressure was not right..

The symptoms of PoTS include: dizzy spells, nausea, fatigue, and collapsing.... As you can only imagine living with these symptoms daily, it can have a huge effect on your everyday life; so I've rounded up my top ten ways of how for me personally living with PoTS impacts my life every single day:

1. Right from waking up in the morning I need to carefully think about how and when I get out of bed, at my worst flares with PoTS, I tend to get out of bed and faint as soon as my feet hit the ground! I now have to ensure I drink some water, sit upright, and turn carefully so my feet are dangling off the bed for a while before attempting to jump out of bed in a Monday morning rush!

2. Much like the above, living with PoTS means planning every activity around your symptoms, as simple as meal times, how far you will needing to be walk, stand in queues, lifting your arms above your head, temperature changes, arranging and planning your day around PoTS is exhausting in itself!

3. It can mean avoiding and limiting certain food and drink that worsen your symptoms, such as alcohol, caffeine, sugar...

4. It also means remembering to take medication every day to regulate your heart and help to stabilise your blood pressure... 

5. It means sleeping with a brick under your mattress to ensure you can rest with your head elevated rather than flat causing poor distribution of the blood flow, and blood pooling

6. It means ensuring I spend at least 10/15 minutes each day carrying out a form of horizontal cardiovascular exercise -often swimming or an exercise bike

7. It means carrying a stress ball around with me, for times when I begin to feel like I am about to collapse it gives me something to my muscles in my hand to squeeze and contract the blood around my body, which is usually pooling in the bottom of my legs and feet

8. It can mean skipping showers until someone else is also home and can watch over me in case I pass out - this is a regular occurrence which I am still trying to manage

9. Cooking and food prep is affected as standing upright in a heated kitchen for a period of time usually is a trigger before I collapse

10. Often basic necessities such as food shopping can cause me to collapse due to the temperature changes from the  cold refrigerated aisles, and lifting/reaching things from above my head, where my blood and heart struggle to regulate....

Whilst not an every day factor, being a young women it means I now need to consider if and when my PoTS will be stabilised enough if I decide to have children

As you can see, I may look fine eating, queuing through temperature changes,etc.. but it is a constant behind the scenes process of managing my life-changing condition, every day.

Sunglasses (similar)

"The Hopeful Chronic"


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