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… ❀️

Stop The Stigma

Let’s get right to it: there should be NO stigma or shame attached to taking antidepressants, anxiety meds etc.

It really gets to me that there’s still people out there who see them in such a negative light. Yes the medications may not help everyone and in some cases can make symptoms worse. But for all those people that they help? They are genuinely a lifesaver. Nobody should be made to feel bad about taking meds for depression and other mental health issues. So, let’s get a few things straight…

  1. Antidepressants do NOT make you weak or any less of a human
  2. They don’t cause ‘fake happiness/feelings’
  3. Taking them isn’t anything to be ashamed of. Fact
  4. Some people need them indefinitely and that is okay
  5. Others take them for shorter periods and that is okay too
  6. They enable you to cope with life
  7. And, in my case, they simply allow me to be 100% me
  8. I’ve been taking antidepressants since autumn 2010 and don’t regret a single tablet
  9. I will take them for as long as I need and don’t give a shit if that’s months, years or decades
  10. You don’t know everyone’s story or what’s going on in their minds, so you have no right to make a judgement on that which you know nothing about
  11. Some people choose other alternatives to medication, but that doesn’t mean their issues are any less severe or debilitating
  12. And medication isn’t the first option for these issues. Doctors will recommend self-help first, counselling etc. And if those don’t help, then pharmaceutical avenues will be explored
  13. Why is it that with a number of ongoing physical conditions, taking medication long-term is never questioned, but for mental health, some people suddenly get in a tizzy about it? You wouldn’t tell a diabetic that they didn’t really need their insulin. So why is someone with long-term depression for example any different?

Basically, don’t be a dick about it. Educate yourself, do some research. And if you still have nothing positive, helpful or supportive to say, keep it to yourself

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.

I’M NOT JUST HOT; I HAVE HEAT INTOLERANCE.

And so ends today’s lesson.

Kelsey x

Specialist Tests

Sunday evening yet again. How did that happen?!

I hope you’ve all had a brilliant weekend and managed to do something you enjoy πŸ™‚ this next post is all about tests: lovely medical tests.

After being referred by my GP at the time, I was due to have some not so pleasant sounding tests at a specialist hospital in London. I’d been under a consultant there for a while who concluded that yepppppp I needed some more prodding and poking. This was around 4 years ago now I think. The hospital actually booked a hotel room for me and my mum as we’d have to stay overnight. AND a patient transport ‘ambulance’ picked us up from home and took us all the way to the hospital. I know that some people have had awful experiences with the NHS but this was the total opposite. I was so thankful. Anyway! The first day I had a 24hr blood pressure monitor fitted. Once that was all explained, we were allowed to go back to the hotel room till the morning.

The next morning I remember demolishing as much food as I could from the buffet. I wasn’t allowed to eat for about 4 hours before the upcoming test so I munched on fruit, cooked brekkie bits, yoghurt, juices + coffee. Well it would have been rude not to. Now the big scary test was coming up; another tilt table. But this time, I would be exposed to ‘stressors’ beforehand. I was strapped onto the hospital bed (to make sure I didn’t faint whilst tilted upwards, although I’ve never fainted in my entire life) and had a cannula fitted to take blood throughout. Yucky yucky. Before being tilted, I had my hand placed between two ice packs to see how my heart rate, blood pressure etc reacted. I then had to count down from a given number in increments of another number. It’s all a bit hazy really but they are the stressors I can think of right now. I was then tilted upright and, as with my previous one, it was stopped prematurely as I was clearly symptomatic and they had the results they needed. The whole thing was over in an hour and a half; a lot quicker than we were expecting. The POTS diagnosis held up and they were sure that my heart itself was totally fine. Relief!

As soon as I could, I grabbed a packet of crisps as I hadn’t eaten for almost 5 hours or something ridiculous. I then had a brief chat with a consultant who went through the findings with us, discussing the next steps etc. Then patient transport was organised for the journey home; totally on the spot. Again I was so unbelievably grateful for the NHS and the hospital staff for making it all so easy and as stress-free as possible.

I appreciate that this probably wasn’t as detailed as it could have been, but my memory seems to have blurred it all into a big mess of wires and hospital gowns. I do have the paperwork somewhere that gives the specific readings from my tilt table ordeal, although it’s likely to be crammed at the bottom of a drawer that’s full of all my medical stuff *gulp*

Stay safe

Kelsey x

Dermatillomania: kicking the habit?

Afternoon from sunny England πŸ™‚

If you read my last post, you’ll know that I struggle with compulsive skin-picking, predominantly focused on my thumbs. The only thing that stops me is to cover them with a plaster so I physically can’t pick at them. But these obviously aren’t very robust and can easily fall off. So, I did a bit of rummaging around on the big ole internet and came across someone suggesting silicone thimbles. As luck would have it, whilst in town with my mum this morning, a new sewing shop had opened; with these silicone thimbles in stock! They weren’t cheap at Β£5.50 each but at least I know they’re sturdy and decent quality. Plus the price doesn’t matter if it helps me kick the habit. I purchased two, put them on and continued with my shopping. To be honest they don’t even look that weird to wear in public. They look slightly medical actually, like mini splints or guards. Maybe I’ll even start a new trend?!

Happy Halloween too! πŸŽƒπŸ‘»

Kelsey x

Compulsive skin picking aka Dermatillomania

Evening everyone. Hope you’re all well πŸ™‚

Yet another new topic in today’s blog post. Well, new in the sense that I’ve not spoken about it before; but I’ve had this particular issue for years. When I was younger, I’d pick the skin around my thumb and fingernails when I was anxious or stressed. It was a distraction essentially. As time went on, it became a habit; something I would often do without even realising. Whether I was actually anxious or not, I’d suddenly notice my skin was sore or bleeding. I only recently looked into it online as it got to the stage where I’d be picking almost constantly. Turns out it’s possibly something called Dermatillomania and it’s actually surprisingly common. Let’s get some facts and science stuff, shall we? Oh and I just want to stress that I haven’t officially been diagnosed with the condition but feel that my experiences match up with what I’ve read so far.

Also known as excoriation disorder, or compulsive skin picking, dermatillomania is a psychological condition that manifests in the form of repetitive touching, scratching, picking, and digging at one’s own skin.

Most people pick at their skin from time to time, but you may have skin picking disorder if you:

β€’ Inability to resist the urge to pick at your skin

β€’ Cause cuts, bleeding or bruising by picking your skin

β€’ Pick moles, freckles, spots or scars to try to “smooth” or “perfect” them

β€’ Don’t always realise you are picking your skin or do it when you are asleep

β€’ Pick your skin when you feel anxious or stressed

β€’ Feelings of tension or anxiety right before picking the skin.

β€’ Feelings of relaxation or the release of tension immediately after picking the skin.

You may pick your skin with your fingers, fingernails, teeth, or with tools like tweezers, pins or scissors.

Well there we go, folks. A brief little window into the general world of compulsive skin picking. Now for some more personal experiences. As I said, it’s something I’m pretty sure I’ve done since I was at least a teenager (I’m 25 now). I do think it began as an anxiety response behaviour but it has since developed into a habitual action; I do it almost constantly and don’t even realise. The skin around my thumbnails is my main target area. I’m almost always fiddling with them in some way or at least touching them. Even as I’m typing this I’m rubbing my thumbs together in-between paragraphs. Or when I’m reading I’ll make sure I’m holding the book in such a way that lets me access my thumbs. For most of you this probably sounds utterly ridiculous. And I luckily don’t pick at them to the extent where I’ve caused any long-term damage; well, nothing that I’m aware of anyway. But the urge to pick is so overwhelming. I bought myself one of those squishy stress toys to keep my hands busy. It does the job when I remember to pick it up, otherwise I’m straight back to it. I think what it boils down to is this: I have to consciously think about not doing it. It’s not something I have to remind myself to do. It’s like breathing or blinking. A constant, habitual action that just…happens. If you sit there now and focus on not blinking, you feel the urge creeping up as your eyes begin to sting and water. Then once you do blink, you feel relief and possibly mild pleasure. Skin-picking is the same. It’s background noise that, when silenced, causes a bubbling anxiety and irresistible urge to start it up again. You become restless and focused solely on the thing you’re not doing but yearn to. So you take the background noise off of mute and the relief washes over you. It’s satisfying too. I’m looking at my dodgy thumbnails now, hoping that the sight of them will deter me from making them any worse. But I know it’s not that simple.

Goodnight WordPress.

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