Driving with POTS

I’ve been meaning to write this one for a while…

When I first became ill with PoTS I was just turning 16. In the UK this is the age where you can legally start learning to drive (theory) , which peers of mine started doing during the following years. After managing my condition better by 18 this seemed like the right time to start lessons, before I went off to university.

Naturally I was nervous about starting to learn to drive, but I was honestly more nervous about how my health would be in a situation it had never been in before.

On my second lesson that we went out, I was driving along a long stretch of road, and I started to feel really unwell (a bit dizzy/disorientated) after pulling over and having some water, I managed to drive home, however this experience had a knock on effect to my nerves when I had driving lessons, and it wasn’t until I put 2 and 2 together over a period of time of me feeling unwell whilst driving, to realise what exactly was causing this feeling.

For me, when my blood pools I start to feel quite disorientated and extremely tired, and where I had been keeping my legs still driving down a long road, the blood was just pooling to my legs, as though I were sitting on a chair (I can’t sit on chairs without sitting on my legs otherwise my blood pools fast!) – and so I realised that as I can’t sit down usually for long periods of time 1 or 2 hour driving lessons where I was doing the same was making me feel dizzy and disorientated on long stretches of road!

This caused me to get quite stressed about driving, being too nervous to drive even provisionally with my dad because I was scared what would happen if I felt unwell whilst driving, however taking small thought out steps really helped me:

1) The most important thing for me was wearing compression socks – without these I wouldn’t be driving!! They keep my legs compressed whilst they stay still! I also worse compression leggings too!

2) The second most important thing for me, which played a huge role in calming my nerves was shortening my lessons. And whilst this wasn’t ideal for my instructor (who was so kind enough to understand), it made lessons so much more doable! I’d have 30/45 minute lessons depending on how I felt, and I definitely feel like I made progress so much quicker and my confidence built a lot faster as I was achieving more in shorter spaces of time!

3) I’d always take a huge water bottle (obs) and my instructor was fully aware of my condition and often suggested we take breaks during the lesson so that I could keep going!

And after a year of lessons & passing my theory test…I passed !!!

One of my greatest achievements, because it was a really daunting task to undertake, which I found stressful, tiring & scary, but still managed to accomplish,

& I couldn’t have done it without my amazing dad ❤️

shoutout to my lil Ford fiesta 💗

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Why it’s important to take small risks

Often, there’s a love/hate relationship with your body. My hate I guess is the fact I have pots, but my love is how well my body has coped and fought against it. And whilst it’s important for my health to come first, sometimes I worry that it comes first in places where it shouldn’t or doesn’t need to. It can be easy to hide behind. But actually the more small risks i’m taking – the better it’s paying off.

Now don’t get me wrong, by small risk I’m not saying I’ve stopped taking medication, or picked up a new hobby in free cliff falling! I mean tiny risks, like going on the bus when previously it has triggered me feeling really unwell, or going on a few night outs, where I used to get super nervous and claustrophobic. However the more I’m doing these scary things – the less scary they are becoming.

Last year was a year of firsts for me, experiencing a ton of new experiences all at once in my first year at university. I went out, I socialised, but I didn’t do everything, and was wary that my health had to come first.

This year I’ve said yes so much more. Sometimes it has a little knock on effect on my health, e.g. the day after a night out I’ll be out of action, but then I have to think would I rather go out and have an amazing night with friends where I’m genuinely care-free, and spend the next day in bed.. or spend that night just by myself in my room. Sometimes I love a cosy night in just watching Netflix, but I’ve found more this year how important it is for me to be around people. Socialising really has a positive impact on my health. I’ve been so happy and it’s because I’ve done scary things, and those scary things have gotten easier.

I just wanted to say it’s worth taking a risk sometimes especially if you know inside that it will make you happy – don’t do anything you really don’t want to do because you feel you have to or because you want to conform, because that’s not fun. This is all about doing more of what makes you happy.

I’m proud of myself for putting myself out of my comfort zone, acknowledging my health – but not letting it over take my decisions.

Freshers week & student drinking 

Freshers week with PoTs 🙂

If you don’t live in the U.K. as I do, you might not know what freshers week is or you might have an equivalent. Freshers week is the week you typically enrol on your course before any lectures start. It is usually harnessed by the student union to get students out there to meet new people and encourage them to take part in extra curricular activities and nights out.. 


However mostly, freshers week is associated with drinking. Which when you think about it is kind of sad, as most of my friends had met and forgotten or embarrassed themselves in front of the new friends they were meant to be making, with the majority not turning up to our first week of lectures due to being so ill! Which is fine, it’s up to individuals what they chose to do, however with PoTs I’ve found the drinking culture the hardest aspect of uni life. 


Now I’m not someone that doesnt drink a drop of alcohol, I enjoy it in moderation (mostly just vodka as it’s the purest alcohol, no added sugars), however moderation + uni drinking are not two phrases that go together! The peer pressure that can surround students to drink is huge, but if you don’t want to – You. Do. Not. Have. To. You really don’t. 


Firstly there are lots of students out there that don’t drink! Trust me! And they still have a great time going on nights out! Secondly, dangerously, students really easily mix drinks especially when others are buying, which can be detrimental to our pots health! 


What I did was make sure I poured my own drink at the start of the night (if you’re pre-drinking) usually it’s a vodka and lemonade, then as the night went on I’d either have a couple more of those (singles!) with a lemonade in between so that it didn’t hit me or instead of getting more alcohol, just keep topping your drink up with lemonade! No one needs to know that you aren’t drinking to the high heavens as some others are!!


Please don’t give in to peer pressure, half the pressure comes from friends once they’ve had a drink, it’s unfair but half the time they just want to make sure you’re having as much fun as they are – which you can easily have without alcohol! If you’re happy to, don’t be afraid to tell the friends you’re hanging out with about your PoTs – I found my friends were super supportive and would offer to get me water or sit down with me after a while or even go outside for fresh air, which already took the ‘night out’ stress away!


Remember that alcohol dehydrates you, and as it’s also not recommended for PoTs people, it really shouldn’t be drink in large amounts, and should only be what you can enjoy but don’t push yourself or see how far you can go! Especially for me as it can have a knock on effect and leaves me feeling really lousy the next day – I really didn’t want it to effect me attending the course (especially as my course needs high attendance to stay on!)


I was also slightly nervous about being out all night as that’s usually when my medication wore out – but I found that I could last a lot longer / cope better if I was wearing my compression socks underneath leggings or a dress! I also found wearing heels really helped – as they make my calves work and reduce blood pooling! 


As I stayed on campus I tended to stick to the on campus nights out as it meant I could safely walk back to my room whenever I’d had enough which was always comforting, instead of being in a really central over crowded club! It also meant that I knew everyone who was going was a student and that the security was high to make sure everyone was safe – leaving me so much more at ease! 


Just remember – you’re there to have a good time so don’t let not drinking as much alcohol as others be the end of your good night – YOU CAN HAVE A GREAT NIGHT WITHOUT IT x

University with PoTS

This time last year I had applied to university and was nervously awaiting results from exams to get in. This time last year I had no idea if university would be something I could do with my PoTS, especially as the course I take requires a block of placement out working. But here I am – First year down and a lot to share and help others with!

In this post I will cover what I learnt whilst handling my PoTs at university, but hopefully I’ll cover some of these things more in depth in other posts !

1) Choosing University.

To start with, hopefully you have a course in mind. Usually students choose something they have previously enjoyed at college or school, something they are interested in and know a lot about or something they really enjoy. 

Next for me I look at the location, bearing in mind the commute or accommodation. This is also where I look at funding, so affordable accommodation, budgeting and whether or not I might need a job whilst studying. 

Finally I look at student life/ student support. What is the university like socially? And how will they be able to support me medically? 


Leading me nicely on to:

2) Disability services.

Disability services is a service all universities have to provide to aid students with disabilities. It usually offers lots from  counselling sessions or a mentor to specialist accommodation and catered timetables. 

For me with my PoTs a couple of things I broached with disability services included how I could manage lectures (they let my lecturers know about my PoTs and that I might have to leave if I feel unwell). 

Also specialist accommodation, there is usually an accommodation block which is specially adapted for those with disabilities, however as all I needed was a room that didn’t take a few flights of stairs to get to – they could arrange for me to have a room with a kitchen/bathroom on one level! DS also were able to provide me with a small fridge for my room to keep my medication (and non-prescribed chocolate ;)) in!


3) Coping in Lectures.

As I previously mentioned disability services were able to ease my worries over coping in lectures, by letting my lecturers know of my condition. However you do not have to let them know if you do not wish to make them aware.

However something that really eased my ‘coping in lectures’ worries was this: university is not like school, in SO many ways, but mostly, at university you are an adult. You are treated like an adult and you’re expected to act like one too, this means that if say you do feel unwell – you are more than welcome to leave, no, really. You do not have to make any excuses in front of the lecture hall, or put up your hand to be excused, if you don’t feel well – just leave, no one needs to know anything, everyone is adults. However I do suggest emailing your lecturer to explain your departure, that way they won’t bat an eyelid at you leaving in the future!


4) Societies.

I’ll say what everyone says about joining societies, but I’ll also say what SO many don’t say about societies. 

Yes, societies are great for making new friends and trying new things, I would encourage it if you feel up to it, especially if you find a friend to tag along with to the first couple of sessions to ease fears.

However, if you don’t want to join a society, do not feel as though you have to. For me, my course is quite full on, my timetable changes every half term meaning I have some later lectures a few times a week that change often. I also have a period when I go to practice in the workplace for a month/two months. This meant for me that trying to fit in a society would be too hard to commit to. I also found that when I wasn’t in lectures, doing work, or with friends – I was tired!! I needed the down time for a rest! I made plenty of friends in my first year of university, and whilst societies are a good way to find new friends – it’s not the only way to find new friends! 

Don’t feel bad either. Look at how far you’ve come and what you’re doing, make sure you take time for yourself, the last thing you want to do it push yourself and make yourself feel unwell. (My course requires 100% attendance so I was careful not to let my health go down a wrong route!)


5) Have fun, and remember to stay happy.

I say ‘stay happy’ because university can be a stressful place. Try your best to stay on top of your assignments and course and half the stress will be gone, honestly. I’m not saying that to be boring, but mostly the stress at uni comes when you forget what your purpose there is for – studying. It’s so easy to get carried away in the social aspect but it’s important to keep on top of things study-wise to keep your mind at ease.

Also try to stay happy in what you do. If you’re moving away from home it can be quite daunting, and I used to worry I’d feel lonely, but do make friends, this is your opportunity to take yourself out and about, see and try new things, cook your own meals and go to bed whenever you want. Enjoy your time there because I promise it’s going to fly by! And whilst saying yes to new things, remember that it’s ok to say no, your happiness is key 🙂

~

Finally, do not be afraid if you find that actually university isn’t for you, or that it’s to hard to manage your health whilst studying at university. University isn’t for everyone, and it can be daunting trying to manage your health and your studies, don’t be afraid to step away, your health comes above everything.

Feel free to message/comment your thoughts/experiences/worries/hopes/questions.



The confidence to speak up

When I was first diagnosed with PoTs I was very conscious of keeping it hidden in certain situations. It’s an invisible illness and at times I didn’t want people to change the way they were with me because of that. However this meant I was often compromising my health in certain situations. I would stand to talk to friends for longer than I could manage, watching my legs turn purple and feeling dizzy just so that I could appear normal and carry on the conversation. Even times when I’d eat something I know might have made me feel unwell because I’d hate to ‘appear rude’ or make people question how I am.

But over the years I’ve realised the importance of actually saying how I am. People were a lot more understanding than I had presumed, and it actually took a weight off my shoulders knowing that they knew and they would know I wasn’t being rude where in the middle of a conversation I would really need to sit down.

It isn’t worth risking your health caring about what others think. You need to do life for you, and if people aren’t ok with it, that’s their problem and not yours. It took me a while to realise that I didn’t need to know others opinions, and that really helped me to be more positive. It meant I started to live my life a little more healthier, actually saying mid lesson to a teacher that I needed to leave but I’d be back, and actually my biggest fear of people having an opinion was often not the case, I realised that sometimes people genuinely didn’t mind if I left, they know who I am and they know that I’m doing this for my health and no other reason.

So stand up, care about yourself over others opinions of yourself. Sit in the middle of a queue in the supermarket if you have to! The rest of the people in the queue will continue to go about their day and will forget the girl sat in the queue within minutes of leaving the store! Be honest and speak up and you’ll feel more at ease, and less worried about the consequences of making yourself feel better!