Adventure Time

This may be news to some of you, but I am an absolute sucker for cartoons; whether they’re made for children or adults. I’m a 26 year old, I swear πŸ˜‰ but Adventure Time always holds a special place in my quirky little heart. It kept me company for a long time when I was at my most unwell. It cheered me up on my lower days. It made my imagination even more vivid + wild. And for that, I’m incredibly thankful. So here’s my current (and very colourful) collection of AT graphic novels/comics

Is there a particular TV show or film that is extra special to you? If so, what it is and why? ☺️ I’d love to hear from you guys!!

Adventure time, c’mon grab your friends… ❀️

I’ll be back soon!

Hello to all you fantastic folk out there 😊 sorry I haven’t managed to post for an absolute AGE. I’ve been pretty busy actually which is something I’m still not used to πŸ˜‚

I’m currently having a rest day as my body is all screwed up from my birthday zoo trip yesterday. But it was TOTALLY worth it! I’ll likely do a post with some photos soon, but for now, I’m just checking in to say I’m all good (relatively speaking) and will be back soon.

See you soon.

Kelsey ✌🏻

Progress Report!

So, this is quite an exciting post! Last weekend, I attended a wedding; the ceremony, the sit-down meal, the reception. I managed ALL OF IT. And not only that, the journey to the venue as well (around an hour)…and I still coped with that too. Back at my most ill, that would genuinely have been inconceivable. Or not even my most ill either actually. It was amazing to be able to be involved without having to go home midway through. I squeezed in a couple of decent rest breaks, just to keep myself at some sort of functional level. But I 100% did it. Any payback was worth it.

Oh and an additional achievement: I was able to watch a proper firework display without holding my ears or flinching constantly!



A weird sort of gratitude

When you think back to being a child, what were your dreams? Where did you want to be by the time you were your current age? If you look at your life now, does it match up? The chances are that, no, it doesn’t. That may because you changed your mind. It might be because of a missed opportunity. Or maybe it’s because of a lack of funds. But for me and others in similar situations? It’s beyond our control. Illness has taken us down a different path. It’s bumpy, muddy and downright treacherous. But we have no choice but to keep following it. Getting ill at 17 and thinking that I’ll be 26 in June? Yeah that’s pretty scary. I still live at home. I’m still reliant on others. I’m still unable to work or study. This sort of scenario would never have crossed my mind as a teenager, let alone as a child. It wouldn’t have been on my radar. You think about getting a job, falling in love, going into space or being a princess. You don’t think about being housebound, wheelchair bound or all the doctor’s appointments.

But at the end of it all, it is what it is. I may not have the career I wanted, but I’ve realised that’s not important. I’ve found my creativity and my love of expressing myself. I may not live independently, but I’ve got a loving and supportive home. I may not be where I wanted to be as a child, but I’ve seen the oh so many options that I didn’t perceive before. And most of all, I’ve found myself. I’ve discovered what I truly value + what I really want from life.

And in a strange way, I genuinely thank my illness for that

2019: goals, plans + dreams

Afternoon my friendly readers! I hope you’re all keeping okay.

As time marches on, it’s important to remind yourself of what you’ve got lined up for the coming year; and head towards anything you would like to do. For me, the main overall and ongoing goal is to keep my health stable, or possibly see it improve slightly. Besides this however, I’m hoping to:

  • Complete more free online courses
  • Battle some anxieties I am yet to beat
  • Keep up with my social life
  • Read more (currently nearly finished my SIXTH book of the year so far. My goal is around 70 for 2019)
  • Write more poetry
  • Give less f***s

And as for things I know are coming up this year or will be planned soon:

  • A wedding
  • Going to visit my dad in his new house
  • Short break with my boyfriend
  • My 26th birthday

So it’s not an extensive list at this point. But for little old me who’s been stuck in chronic illness limbo for over 8 years? I’m still getting used to actually making and having plans!

Don’t let the bastards get you down.

Kelsey x

Heat Intolerance

Howdy howdy! How’s everyone doing on this Thursday afternoon?!

Now that it’s winter in good old England, I can reflect on one of my most persistent symptoms without melting into a puddle: heat intolerance. This is actually something I’ve likely struggled with since childhood. I would HATE getting into a hot car. I’d throw a tantrum and get myself worked up into such a state. During hot weather at school, I couldn’t focus on anything other than being sweltering. I’d zone out, feel miserable and would often end up with a migraine. I don’t know if how I felt was an appropriate bodily reaction to the hot weather though. But since I’ve had POTS? My body does not react how it should.

Temperature regulation is essentially what it boils down to (horrendous pun intended)…It is not uncommon for POTS patients to have some temperature regulation issues; resulting in either a lower or higher body temperature than average or a significant inability to tolerate heat or cold.

When I get hot, I get REALLY hot. And it can take me ages to cool down. I’ve been known to overheat when it’s not even hot outside. Not only that, I experience a wide variety of heat-related symptoms

  • Excessive sweating
  • Headaches and migraines
  • Severe irritability
  • Heart palpitations
  • Dizziness
  • Breathlessness and air hunger
  • Increased fatigue
  • Inability to focus
  • Nausea
  • Lightheadedness

The effect it has on me can linger for days afterwards. Once the actual ‘event’ is over, I’ll still struggle with many of these symptoms. Over the summer, we had a heatwave that lasted for weeks. It was awful. If I had to move, it was a monumental effort. I’d get breathless just sitting on the sofa even though I hadn’t been active in anyway. All I could think about was being hot. I know some of you are probably thinking ‘everyone gets hot!’ or ‘heatwaves are like that for loads of people!’, which are both fair points. But let me tell you a little story.

On holiday in Dorset a couple of years ago, we went to play crazy golf. I was wearing a t-shirt, shorts + a pair of leggings underneath. It wasn’t a hot day, but it wasn’t cool either, hence my in-between choice of clothing. I was hot before we even started playing. I was a sweaty mess, on the verge of having a POTS attack in the middle of a mini golf course. In the end, I had to partly strip off in public. I couldn’t handle it anymore. I hid behind my mum and stepdad, removed my shorts and leggings, so all I had on my bottom half was my underwear. I then put my shorts back on and carried on as if none of it happened. Most people could probably have cooled down with some water and simply waiting for the temperature regulation in your body to kick in. But mine doesn’t work like that. I could have gone on overheating for at least an hour.


And so ends today’s lesson.

Kelsey x

A New Diagnosis (continued)

Let’s jump straight back into it, shall we? No time like the present and all that jazz.

So, as I said in the previous blog post, I was referred to a cardiologist at a local hospital to test for POTS. The only real way to officially diagnose POTS is via something called a Tilt-Table Test. Essentially, you are strapped onto the bed/table, which is slowly tilted upwards (around 60-70 degrees) to mimic standing. The straps are in place as a safety measure in case a patient faints. A footboard is also present so you’re not just dangling! Heart rate and blood pressure readings are taken throughout. The upright position can last anywhere from 10 to 45 minutes, depending on your readings, symptoms etc. The test will end when adequate results have been obtained, the patient has fainted or the maximum time has elapsed.

To be given a diagnosis of POTS, a person has to have:

  • A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing
  • Those aged 12-19 years require an increase of at least 40 beats per minute
  • These criteria may not apply to those with a low heart rate when resting
  • There is usually no drop in blood pressure on standing

I wasn’t particularly nervous about my upcoming test as I just genuinely wanted some answers; did I have POTS? Was my M.E diagnosis wrong? I can’t recall exact details (my test was in May 2012), but I definitely remember how utterly strange it felt. I became symptomatic almost straightaway after being tilted, which wasn’t really a surprise. My feet, legs, hands and arms all started to go numb and the little energy I had was simply draining away. After only a short time, I’d say about 20 minutes or so, the cardiologist stopped the test as he had seen enough and it was evident that my symptoms were causing me some real trouble. Once I’d had a rest, gotten changed out of my hospital gown and my mum had entered the room, he told us both that I did indeed have POTS. There was no doubt about it. He couldn’t tell me whether I had M.E alongside it as the symptoms overlap so much. But to have a diagnosis of something that can be properly tested for was a real relief; as if I now had something concrete and medically proven. Overall it obviously wasn’t an enjoyable or pleasant experience; when are hospital tests ever either of those things? But to have something 100% proven, something that couldn’t be dismissed as fake, was a wonderful result. I know not everyone is this lucky and it upsets me greatly, but this is just my own story and experience; many struggle to be heard and are refused tests that can easily be carried out, even though there is strong evidence of another condition at play. On this occasion, I was unbelievably thankful for my lovely GP, cardiologist and NHS.

Have a great weekend!

Kelsey x

Exhausting Fatigue

Isn’t that just being tired?

I get tired too.

Oh really, sir, is that so?

Well let me educate you.

It’s not just being tired

And I don’t just need more sleep.

It’s ongoing, always with me,

So don’t act like a creep.

All my energy drained,

There’s simply nothing there.

Heavy limbs, aches so strong,

It doesn’t seem that fair.

Just push through, get on with life,

Everyone has to do it.

Excuse me, sir, but may I say,

You’re totally full of shit.

Weighed down by their bodies,

Some must stay in bed.

Unable to move, stuck in place,

Can’t even lift their head.

Daily life, tasks and chores,

Are a challenge everyday.

Even the smallest, tiniest thing,

Our bodies make us pay.

Never felt it? I’m happy for you.

Be grateful, lucky and free.

Fatigue is more than tiredness,

So don’t spout that ignorance to me.