Stress

It can hit you like a bus

Or creep up in the dark

It takes on many guises

And it always leaves a mark.

Maybe you feel sick

Or maybe it’s an ache

Could be pain deep inside

A presence that keeps you awake.

Your whole mood may change

Is it anger, worry or fear?

A low and desolate place

Nobody wants to be here.

But the light is nearby

Somewhere round the bend

Keep on going, be oh so brave

It’ll be worth it in the end.

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

A New Diagnosis

Hello again 🙂 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

Bits + Bobs

Hello all 🙂

I hope you’re having a good weekend so far; or at least as good as can be. This post is just going to be a random selection of pics I’ve found. We don’t always like reading an essay style post or something really intense, so this seemed liked a perfectly acceptable solution. Enjoy!

Over and out.

Kelsey x

Things Not To Say To Someone With A Chronic Illness

Afternoon all! I hope you’re having a good Sunday. For this post, I sought the input of friends on one of my social media profiles. I asked if there were any particular things that they remember being told, asked etc with regards to their chronic illness(es). But I only wanted the bad, inappropriate, ignorant, hurtful and just plain silly remarks/stories. I want people out there to realise that, even though you think you’re helping someone, you can actually be damaging them mentally, or simply making yourself look ridiculous and ill-informed. My plan for this blog post is pretty straightforward; I’m going to take what my friends have told me, type it all up and hope that you’ll think the comments are just as bad as we all do. Note that this particular post will be about physical chronic health conditions. I’ll be doing a second post dealing with mental health at a later date. So, let’s get this rolling.

“I’ve been given lots of random advice! Told to exercise more, lose weight, eat healthier, get a part-time job etc etc” – Mark, M.E/CFS

“You’re just lazy. Have you tried not napping? You need to just push through and do normal activity and exercise. Aw, did you not sleep well last night? Why do you yawn so much, it’s really annoying. You were in bed for a week after the gym? It’s alright for some/you’re so lucky! I wish I could stay in bed” – Hannah, CFS

“You just need more sleep” – Alicia, Fibromyalgia and CFS

“My personal favourite comments from one person in particular…This is after being diagnosed with M.E/CFS for 16 years, a former manager asked if I was ‘allowed to work’ and if instead of a full-time career I should look into a part-time job, also that she was very ‘nervous’ that I have a medical condition as I’m a ‘time bomb’. She then continued that she had looked up and confirmed that apparently I was making half of my symptoms up because they weren’t on her Google search of most common symptoms. Another woman asked me how I’d be able to cope with being a mother as I’m always poorly and children are ‘hard work’. She said I wouldn’t possibly be able to have children as it’s unfair on them. I seem to believe she doesn’t think I have a partner or a supportive family who will provide any help necessary, if required” – Gemma, M.E/CFS

“I got told (when I was 17) to drink more and have more fun and I’d be alright” – Kayleigh, M.E/CFS

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“You cannot have M.E, you’re not fat. Ah that’s shit! My sister has it too – she ate healthy and is now better. You’ll be fine, just need to rest. You should try going gluten-free (I’ve been gluten free for five years anyway). M.E? Isn’t that M.S? Get better soon! 22 years? Gosh I would have probably killed myself by now. Drink more water. Well at least it’s not cancer. Is this all you want for your life?” – Alice, M.E

“God never gives us more than we can handle. (Almost always said by someone who has had a relatively simple life, who mistakenly thinks it will be comforting to hear that their God keeps throwing this shit at me deliberately)” – Katie L, M.E, Ulcerative Colitis, Endometriosis

“Have you heard of The Secret? You’re sick because of what you’re putting out into the universe” – Kassady, Ehlers Danlos Syndrome, Gastroparesis, Dysautonomia

“Aren’t you too young for all that? And you are awful young to be on Warfarin, aren’t you?” – Katie B, Venous Sinus Thrombosis, Inter-Cranial Hypertension, Joint Hypermobility, Fibromyalgia, CFS

“After I was signed off sick, I was told that I wasn’t allowed to join my company for their work Christmas do because I ‘didn’t look ill’. Not because having ill people wasn’t their policy, but because I didn’t look ill. Explaining how my illness worked to someone else, they asked if I was just overthinking it. My DWP disability advisor once said to me ‘I think you can do more than that. I know someone with M.E who does x, y and z. You’re so young, don’t you at least WANT to work?'” – Kim S, M.E/CFS

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“It’s because you drink Pepsi. I’m 82 and I can cook” – Sally, M.E/CFS, Fibromyalgia

“Migraines? I know how you feel. I get headaches too” – Raynor, Chronic Migraines

“Well you know how some people believe in M.E and others don’t? I’m one who doesn’t…(said to me by my own GP). Some people just can’t handle pain (said to me by a different GP). You just need to go out and get some fresh air. Once you lose weight, you’ll feel so much better” – Jess, M.E

“This life isn’t a dress rehearsal, you only get one of them. I don’t feel like you really want to get better” – Will, M.E, Fibromyalgia, IBS

“On frustration with multiple infections (not related) and inability to heal a normal earlobe piercing, my GP mocked me and said to the student GP sitting in ‘look at her cry. We manage without ear piercings’, thinking I was upset specifically about the piercings themselves. If he was more compassionate he would understand I was upset about my immune system. This was the last straw” – Elaine, M.E

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“I’ve had people ask me how I am but not given me enough time to actually reply. They then say that I’m ‘looking SO well'” Kim M, M.E

“You’re too young to take all those medications. You should consider stopping them. Sorry how do you spell that? (from consultants when I tell them what I have). You’re tired? But you haven’t done anything?! I’ve also had some silly suggestions of things that might help me: lying in a darkened room with my feet up, rubbing my stomach while eating and having a bit of a hum to improve digestion” – Sammie, Ehlers Danlos Syndrome, Chronic Migraines, Fibromyalgia, Fatigue, Endometriosis

“You should try to make it to your appointments” Anthony, M.E

“Well you look fine to me. Yeah I know how you feel, I only got five hours sleep last night (Five? Five in a row? Damn I would think I’d died and gone to heaven!). God there’s always something wrong with you isn’t there? But you went out yesterday, obviously you were fine then so why can’t you today?” – Lucy, Dysautonomia, CRPS, CFS

“Oh M.E? Is that the one where you die?” Georgina, M.E

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“You need to get out of your own head more. Try eating a few steaks and go for a run. I knew someone who had that and she’s not dead. You should go travelling, the sunshine will do you good. M.E is a very yin disease, you need to increase your yang” – Emma, M.E

“Can you still have sex?” – Deborah, M.E, Fibromyalgia

“Oh you’re just a fainter (this is what a paramedic genuinely said to me. I in fact have Vagus Nerve Epilepsy so I faint and seizure often)” – Layla, Vagus Nerve Epilepsy, M.E/CFS, Fibromyalgia

“There’s nothing wrong with you. You don’t smell. You’re not a vampire (My own GP said this)” – Danielle, M.E

“You haven’t really got an excuse unless you have cancer. You can still work with CFS. Sleeping in the day will make things worse. Have you read this article? If you build up exercise gradually you will get better. I reckon you could do at least 5 hours work a day. Why are you not going out?! , I think you have Agaraphobia. Have you thought about trying Yoga?” – Lizzie, M.E/CFS

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