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… ❀️

The Tea Party

Another post already?! I’m shocked at myself.

Hope you’re all doing as well as can be expected. I’m not relishing the prospect of 31Β°C temperatures here tomorrow. I can already hear my POTS kicking my arse and making my heart do the Can-can. ANYWAY. Distraction and grumpiness over. Time for my foodie review πŸ₯ͺβ˜•

There’s a little tearoom/coffee shop that I discovered (thank you Trip Advisor) online whilst on a jaunt to the coast. As I’m Coeliac, I’m constantly on the lookout for new places to eat that offer friendly food. In fact, I think I’ve mentioned this particular tearoom in a previous post πŸ‘πŸ» it’s called The Tea Party (loving the Wonderland reference there) and it’s so unbelievably cute inside. I’m now kicking myself for not actually taking any interior shots but I’m sure some Google searches will help you out. Oh and it’s in Lee on (the) Solent by the way, down in beautiful Hampshire.

An iced vanilla coffee started my lunch off on a high note; plenty of sweetness and caffeine to give me a boost. After perusing the specials menu and asking about gluten-free options, I opted for the special toastie: halloumi, avocado and sun-dried tomatoes 😍 served with a salad garnish and some homemade slaw. DELICIOUS. Le boyfriend had a chicken mayo salad wrap which was also from the specials menu. He happily demolished said wrap, so it was clean plates all round. Annoyingly we had chosen a table almost right next to the cabinet containing the cakes. I hadn’t planned on getting a slice as I wanted ice-cream on the beach. BUT, for my gluten-free buddies, they have some sort of GF cake available most of the time. Yesterday it was chocolate and mint which looked AMAZING.

My fabulous toastie
le boyfriends luncheon
And a compulsory beach shot

So there we go; a little insight into my food loving world and how I handle being gluten-free 😊

Until next time, my friends.

Kelsey x

CBT news

Here comes a positive post, people. Positive post warning.

So I’ve been having high intensity CBT for over a year, which I genuinely can’t remember if I’ve mentioned before. Gulp. Anyway! You now know. It was mainly targeting my various anxieties and depression, but we also discussed phobias and stress etc. I’ve had regular CBT before but was sadly unable to get the most out of it due to my health being much worse. And I actually think that the regular type wasn’t really going to work for me anyway. As an added bonus, the high intensity CBT is ongoing for as long as you need, without needing to be referred by your GP again and again. Three cheers for avoiding that annoyance.

My counsellor was absolutely legendary. I know it’s his job but I could tell that he genuinely cared about the people he sees. I had no trouble opening up and being honest either. It was all very relaxed whilst still providing all the help I required.

Here comes the positive news…

After reducing the regularity of my appointments, I was officially discharged as of the 3rd of April!! πŸ™‚ It’s been stressed as well that I can start up my sessions again at any time in the future if the situation arises, which is a great reassurance for my little brain.

I’m unbelievably grateful that I had access to such a life-changing form of therapy. And I’m beyond grateful that it actually worked for me. I’m honestly in the best place I’ve been for years. So I’d like to say a huge thank you to the wonderful NHS. And, in a strange way, a thank you to myself for embracing and fully committing to the whole process. I’ve got my proud face on and I’m wearing it joyously.

Stay positive, safe and be kind to yourselves.

Kelsey x

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

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

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.

A New Diagnosis

Hello again πŸ™‚ hope you’re all doing well.

Getting back on topic with my health issues for today’s post; all about a new diagnosis I received back in 2012. As you hopefully already know as you’ve read past posts, you’ll remember that I was initially diagnosed with M.E back in early 2011. They tested for pretty much everything, found nothing, so they left it as M.E or ‘chronic fatigue syndrome’. As I began to make new friends in the spoonie circle, it became apparent to some of them that my symptoms were very much tying in with another condition: something called: POTS (Postural Orthostatic Tachycardia Syndrome)…

Don’t worry. I hadn’t heard of it either. In true Kelsey style, let me grab some info from elsewhere.

Orthostatic intolerance is a term that is sometimes used to describe symptoms of POTS. It means symptoms that occur on standing and are relieved by lying down. In addition to heart rate and blood pressure, other bodily functions that are regulated by the autonomic nervous system can be affected

Well doesn’t that sound like fun? Still want to read more? Here’s a symptom list from the same website (potsuk.org)…oh and for a bit of extra understanding of my symptoms, all the ones I have experienced will be in bold.

Dizziness or light-headedness or presyncope (almost fainting)

– Syncope (fainting or blackouts)

Palpitations

Headaches

Tiredness or weakness

Brain fog

Shakiness

Shortness of breath

– Chest pain

Excessive or patchy reduced sweating

Gut problems

Poor sleep

Visual problems

– Bladder problems

And here’s a list of triggers that can worsen symptoms:

– Excess heat

– After eating; especially refined carbohydrate eg sugar, white flour

– Speed of positional change; don’t stand up quickly

– Dehydration

– Time of day (may be worse in the morning, especially rising after wakening)

-Menstrual period

-Deconditioning or prolonged bed rest

-Alcohol

– Exercise (occasional exercise can cause one to feel worse, but an ongoing exercise program can improve symptoms)

The next step was approaching my GP. I’d been told that it was unlikely my doctor had even heard of POTS, so I wasn’t holding my breath. But actually, after telling her about it, my symptoms etc and her own bit of research, she agreed that it was worth me being referred for tests elsewhere. HALLELUJAH!! I know it’s not that easy for everyone but I was so grateful. The possibility of getting a diagnosis that could be medically proven was genuinely exciting. There would be no way that anyone could dispute the fact that I was unwell or argue that the diagnosis was wrong.

I’ll continue this in another post very soon where I’ll be telling you about the diagnosis process.

Stay safe.

Kelsey x