PoTS Update

Hello readers and followers!

I thought I’d give you all an update on how I’m doing since my diagnosis of Postural Tachycardia Syndrome, otherwise known as PoTS. I like to write these little updates, firstly because it helps me process and deal with my own condition (which is chronic and uncurable), and secondly because although the condition isn’t necessarily rare, it is rarely diagnosed, and I’d like to do all I can to help and support others who are fighting for a diagnosis, or who are living with the condition.

Today I’d like to talk to you about what is happening inside my body when/if you meet me, because more often than not, I will seem absolutely and completely fine.

Right now, as I am writing this, I am distinctly not-fine – but nobody would ever know it. Any movement that involves a gravitational tug (such as standing up) is giving me horrid dizzy spells. And those frequent dizzy spells bring on headaches and grogginess. Also, the gentlest of slow walking is completely knackering me out – thank god for the rain, so that you can’t necessarily tell how badly I’m sweating!

So why is this happening?

Due to a condition called Hypermobility Syndrome (one in five people have some form of hypermobility or double-jointedness in various parts of their body – it becomes the much rarer ‘syndrome’ when it starts to negatively affect you) my blood vessels are much springier than they should be. This means that my heart has to work extra hard (doubly, or sometimes triply) to get the blood around my body, as the blood vessels don’t constrict as they should. The neurological process that makes my heart beat too fast and too hard is what’s called PoTS. Most people with PoTs have hypermobility syndrome, but not everybody with hypermobility syndrome has PoTS.

Due to a silly thing called gravity, liquid like blood likes to pool in the lower extremeties (sometimes my feet actually swell with what is known as venous pooling). Upon standing, my heart goes ‘HOLY COW! WE NEED SOME BLOOD UP HERE!!!’ and goes into overdrive. My heart rate will rise (you need a rise of 30 bpm or more to be diagnosed with PoTS) and my blood pressure will drop, as it simply can’t get up to my chest and head in time. Hence, the dizzy spells. Every bloody time I stand up. I can help prevent this by moving my legs a little bit before I stand to get the blood pumping, but to be honest, most times I forget. And then, if I stand up and move far too quickly, I leave myself open to fainting. WHICH IS FUN (not).

This is why, when you see me out and about, I’m probably walking with a cane. It gives me some support when I’m having a particularly bad day, and warns people around me that I might not be as well as I seem. I find this particularly helpful on public transport – people are SO MUCH NICER to you when you have a walking stick!

So, today. I’m feeling like crap. The inside of my head is fine, but the rest of me is not. It’s like my mind is bursting with energy, but my body can’t keep up. Writing blogs like this stop me from getting depressed about it, but its still pretty frustrating. Especially as I have no idea why I’m feeling bad. I’m learning to tell what triggers a particularly bad spell – eating too big a meal, drinking alcohol, or being too tired – but sometimes I get days like today, when I got out of bed and had to fight the urge to crawl back under the covers, for no real reason that I can tell. I’ve had errands to run today, and I’ve felt like a little old lady hobbling with her stick. I’ve had two major close faints; the first one at home, and the second when out in public, and its horrible.

So what should you know when you meet me? And how can you help?

  • Offer me a seat! Sitting down means my heart doesn’t have to work so hard and takes off a lot of the pressure.
  • Don’t mention the sweating! On days like today, just standing still is enough to make me break a sweat. It has nothing to do with my weight, or my fitness levels. It is a neurological problem, and horrible for me. I know I’m doing it, and I try to not think about it for the sake of my own embarrassment, but if you see me sweating, chances are its because I’m standing up. Let me sit down, and the sweating pretty much completely stops.
  • Walk slowly! On bad days, I really can’t keep up. When I say I need to go slower, again, its not because I’m fat and unfit – it’s because my heart is struggling to cope. Your heart going for a run is my heart going for a gentle stroll.
  • Don’t panic! The worst thing that will happen to me is that I’ll pass out, but this is very, very rare. I suffer from frequent ‘near-faints’ where my vision will go funny and I’ll get very dizzy, but I’m lucky not to suffer from complete blackouts (some people with PoTS are more sensitive and do). My fainting spells are often slow and creeping, and more often than not, I can find a seat before I actually faint. But if the worst happens and I do end up blacking out, this really isn’t a big deal. It’s just because my heart can’t pump blood to my brain quickly enough. It’s not a sign of anything more sinister, and I will be fine.
  • Give me a glass of water! Keeping hydrated is one of the best things I can do to look after myself. The better hydrated I am, the better my circulation will be. To keep myself ‘well’ I can end up drinking up to 4 litres a day (that’s double the daily adult recommendation). Some days I don’t need so much, and some days I just can’t drink enough. Either way, if I tell you I’m not feeling well, get me some water pronto!

So, in summation, I am not fine. I may look and sound fine, but I am not. My body doesn’t work the way it should, and it puts a lot of pressure on me. I end up very tired, and more often than not a little irritable. But go slow and have some consideration, and the good news is, that I’ll be fine! My condition is completely benign, as in, nothing bad will happen to me if I feel unwell. I’ll just continue feeling unwell, and it will be unpleasant for me. It is not a sign of anything more sinister going on, and I do not need a doctor or an ambulance. To be honest, most doctors have no idea what PoTS is as its so rare – I’m the best at treating myself, and often the best treatment is a sit down and a drink of water.

It really helps me when the people I’m around are aware of the condition. Some days I forget I have it, and some days, like today, I will feel a wretch and one flight of stairs is enough to do me in. But there we go. I’m learning to manage, and I know that in time it will get better and easier.

In the meantime, please don’t hesitate to ask if you have any questions.

Jem and the Holograms, or, Why is Hollywood Messing With Me?

Jem and the Holograms was my favourite show as a kid. My absolute favourite. It wasn’t on that often, but when it was, I was completely enraptured. For those of you who are too young to remember it, or never caught it during its late eighties peak, here is what you missed:

So here’s what it was about, as best as I can remember. Jerrica is an orphan, her dad having recently died, leaving her in control of a record company. But, that record company isn’t doing too well, so, with the help of some magic earrings and a hot computer programme called Synergy, she becomes Jem – a huge amazing pop star! She has other orphans in her back up band, and they often went head to head in the charts against The Misfits, who were also signed to the record company I think? Anyway, it was all secret identities and cool songs and outfits and pink and sparkle. The songs were brilliant, and often were embedded within the show as real pop videos, complete with MTV style info in the bottom left of the screen. Glamour and glitter, fashion and fame. It was The Best.

So imagine my surprise when earlier today, I came across the trailer for the new Jem and the Holograms film:

Apart from the pink makeup… there’s not an awful lot here that looks like the cartoon I know and love. In fact, this film looks a little lame. Like a slightly more colourful lifetime movie about a youtube star who ‘blows up’ and maybe gets a little sidelined by fame? With a bit of romance? And Juliette Lewis being the Boss? Plus it all looks distinctly ‘small scale’ as in, no OTT music videos, no big style gigs, in fact, where is the music???

What I’m trying to say is: sure, this film looks ok. It’s probably completely fine. However it is most definitely not a Jem and the Holograms film.

Here’s what I think the producers et al have missed:

Jem is a freaking superhero. Ok, she doesn’t fly around the world solving crime or anything, but she does have a secret identity. Jerrica is Clark Kent, mild-mannered and tame, whilst Jem is Superman – the wild punk pop star. She’s aspirational. She represents everything an eighties child wanted to be, and after a few reruns, you could even sing along! She had a costume, and a slightly mystical mentor in the form of Synergy. She was my Justice League. She was my Avengers.

I suspect that everyone behind this film was so desperate for it to ‘make sense’ that they completely forgot what made the show fun and fantastic in the first place. But with the raft of superhero films out right now, would it have been so bad if the Jem film was more of a camp eighties throwback with killer hooks and killer heels? There’s room for it. Heck, if we can’t have a Black Widow film, then surely we can have a great one for Jem?

Here’s what I would have loved to have happened: Jerrica runs her father’s record label, which is sinking. She finds some magic earrings that unlocks her father’s top-secret project, Synergy. With the help of Synergy and the earrings, Jerrica finds that she can magically transform (yes, magically!) into the pop goddess Jem, who takes the charts by storm. She becomes a girl-powered viral superstar! But how can she balance all the glamour and fame with her business life and boyfriend? Can girlie have it all? Of course she can dammit! Plus The Misfits would be in there too, somewhere. Saving her father’s empire and inspiring millions, Jem becomes a camp cult classic, endearing and well-meaning, but also batshit crazy as hell. Imagine Lady Gaga with magic powers doing classic era Britney-style videos. And OMG the songs would be sensational – probably produced by Max Martin or something. Imagine the soundtrack. IMAGINE IT. Like, they would legit end up becoming number ones in the real life chart because they would be that good. The soundtrack would be the best selling soundtrack of all time, bigger even than the Romeo + Juliet one.

This is the film I wanted. And notice how closely it resembles the original cartoon? But of course, Hollywood didn’t ask me what to do with my treasured memories. They wanted to make something slightly grittier and real, about teenagers who have no idea what they’re doing with their life being manipulated by Big Business or something.

I wanted the glitziest, pinkest superhero movie ever to appear on an big screen. What we have appears to be something monumentally dismal and drab (but with a splodge of pink thrown in here and there for good measure). It makes me sad.

Come in Dazzler, you’re our only hope!

Dazzler by Byrne and Muthart 3

Politics and Me…

This Thursday will be the third general election I have voted in, and the first that I won’t be voting Liberal Democrat. But it occurs to me that I have never been as politically aware as I am now – its only been within the last six months that I’ve been awakened to the truth of our political system, and I’m hoping that I might be able to impart some of the knowledge that I’ve gained here.

The truth is that up until recently I probably knew more about America politics than British. If I was living in the States, I’d probably be a paid up member of the Democrat party. In the UK, the lines between left and right aren’t nearly so clear cut, which is why I’ve found politics so confusing for most of my life.

The reason that I voted Liberal Democrat twice probably has more to do with the fact that I have no idea what it means to be Labour or Conservative than because of Lib Dem policies. Although, in the last election, I was keen to support students and the promise of no increase in university fees. Being let down on that promise is why I won’t be voting Lib Dem again.

This year, I will be voting Labour – and here is why:

The Tories believe that you should keep most of the money you earn. You’ve worked hard for it, and it is yours. You will have to pay directly for more and more services with that earned money, and because you can do this, the public sector doesn’t need quite so much to keep going. In an ideal Conservative world, the economy thrives as people pump more and more of their earned money into businesses that provide the services you need. If you are rich, or planning on becoming rich, this system works. Business owners love this system, because they get to keep more and more of their profits. You pay for exclusive schooling because you can afford it, and you pay for private healthcare. I can understand how this works for many people, and why they like this system, but I believe that it is inherently flawed. In an economically competitive world, where some will become very rich, some will inevitably be very poor. And what happens to those people? How do they survive in a world where public services are depleted? A Conservative system is all about survival of the fittest, and a race for more and more wealth. You become a selfish member of society. Never mind anyone else, what about ME ME ME???

I believe that the more you earn, the more you should be paying to be a part of the bigger society. If you are lucky enough to be earning millions, then you should be paying your way to maintain and support the nation. You should be pleased to be able to help support those who aren’t doing as well as you. Wealth is a privilege, not a right. The taxes skimmed off the top of the rich go towards supporting public services, meaning the more the rich earn, the better off everybody will be. Better schools for everyone, better hospitals for everyone, and a general ethos of equality and wanting to help your fellow man. A Labour system acknowledges that some people will be poor, and that this isn’t necessarily their fault. You know what? Some people don’t want to be staggeringly rich. For some people – more than you would think – wealth doesn’t equal happiness. A vast amount of people in this country work to get by, and are perfectly fine not straining for more and more. Does this mean that their kids don’t deserve to go to good schools? Or if they have a heart attack, they aren’t entitled to quality healthcare? I believe that we can all work together to move forward as a nation, regardless of how much money we earn.

This is a brief and rather crude outline of left and right leaning economics. It may even be a little bit flawed – I’m not an expert, but after all the reading and the conversations I’ve had lately, I think I’ve got it mostly right (please feel free to comment and correct me!).

A Conservative government works brilliantly if you’re a business owner, an employer of people, or someone who likes luxury cars, two holidays a year and weekends away in the country. But not everybody is like this. I’m not so selfish. I like to think that when (if) I do become rich and famous from my writing, that I will want to pay a higher rate of tax, because I know that it would mean that I’m supporting those less well off than me. I would want to contribute to the greater good of society, and not be selfish with my earnings.

So there we are. I’m a raging leftie. I’m a poor, impoverished artist with a chronic health condition, who relies on the state for support. I wouldn’t go so far as to say I’m a socialist, but I don’t think that the pursuit of wealth is necessarily a motivating factor for me. In fact, when I come across people for whom money is everything, I find it quite an ugly trait.

This isn’t to say that I’m a fan of Miliband. To be perfectly honest, I actually warm to Clegg more than anyone, but we should all remember that we’re electing a party and not a person. We’re voting for an ideology – not a celebrity. And Conservative ideology is pretty damn ugly to me.

In a future Conservative world, the rich do get richer (which is great if you’re already rich!) but the poor get poorer. The gap between rich and poor gets wider. Those on the wrong side of the social tracks will always be struggling, and may never get to achieve their potential. This saddens me. I want a Labour government that supports me, and others like me, and if that means that the rich have to pay a smidgen more in tax then they should be thrilled to be rich enough to pay it! Pay it back to pay it forward.

I’ll finish this blog post by saying that I know that as they currently stand, our two main parties aren’t nearly as clear-cut as I’ve presented above. There are a vast number of complications and wider world problems that mean the waters between left and right become increasingly muddy. I wish it were simpler. I wish our politicians were honest, and answered our questions directly, and didn’t have such sketchy personalities. Plus there are other prescient issues, like immigration (definitely a good thing!), housing (we need more please!) and national independence (lets’s stay friends!) that have sway and influence away from the generalised party ideologies.

But there we have it. I’ll be voting Labour on Thursday, because I believe in the greater good, and because the astronomically rich in this country are getting off easy – making life inextricably harder for the poor.

Whoever you choose to vote for, please make sure you have your say. Make time on Thursday to actually physically vote – we may not feel like we have a say in this big scary world, but the truth is we do.

Vote, get involved, and have your say.

Me and My Walking Stick…

New development for me with regards to treating and managing my Postural Tachycardia Syndrome (PoTS)!

I have a walking stick!!!

The reasons for having my stick are threefold:

  1. It provides me with support when I come over giddy and faint. This doesn’t happen often in a normal day, but when I’m out and about in town and busy, these dizzy spells can make me feel rather unwell.
  2. It alerts other people around me to the fact that I have an invisible condition. When on the bus, or on the tube, or in any circumstance that I might find uncomfortable, people see me and are aware that all might not be what it seems.
  3. It reminds me that I need to pace myself. This is the most presient thing for me right now: I keep forgetting that something is wrong with me! Due to the nature of my illness, I may not feel unwell straight away – I tend to find that I’ll feel the effects of a busy day either that evening or the day after. Excess fatigue and hypersomnia are huge problems for me. The stick reminds me, as I’m out and about, that I need to take things easy, in the hope that I’ll feel better later on.

I’ll let you know if it makes any difference!