Fitbit – Thumbs Up or Thumbs Down?
Fitbit – thumbs up or thumbs down? POTS is a form of dysautonomia (autonomic nervous system dysfunction) which affects many…
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I was hidden away from the world, housebound, and unable to care for myself independently for 3 years due to having severe cases of two chronic illnesses: Postural Tachycardia Syndrome (POTS for short – a type of dysautonomia) and Myalgic Encephalomyelitis (ME for short – a complex multi-system disease with a wide range of disabling symptoms). ME is sometimes referred to as chronic fatigue syndrome/CFS. Personally, I can’t stand that name as it sounds a bit like ‘Very Tired Syndrome’ – which completely undermines the seriousness and complexities of the condition.
Needless to say, being housebound, dependent on others, and so unwell for so long was very isolating and at times, lonely. I had to cope with a lot during that time – the loss of everything I enjoyed, like my career (which I had worked really hard for), exercising (I had been a gym-junkie for many years), socialising (which I loved) – and essentially, the loss of my identity.
all MY pearls
Am I For Real?!
M.E can mean – regularly questioning whether I’ve been imagining the whole thing all along … for SIX YEARS.It’s got…
DIY Research: Knowing When To Stop
I used to spend so much energy I didn’t have researching every little thing, in the hopes I would find…
Post-Exertional Recovery: A Conversation Between Friends
Post-exertional recovery with M.E. It goes a little like this: Healthy person: ‘Hey friend, fancy meeting up today for a…
Brain Fog and Brick Walls
Brain fog is a brutal symptom of ME and POTS, and one of the hardest things to explain. But I’m…
POTS/ME and Overactive Bladder
POTS and ME can both mean Overactive Bladder (OAB) No-one under 75 really expects to have bladder issues. I mean…
Your Past, Present and Future Self
Is your past self proud of you? How about your future self – do they get a high-five?
What Would You Like For Christmas?
What Would You Like For Christmas? I can normally answer this question from Pete, my other half, pretty easily. There’s…
ME, Parenting and Pantomime: A Christmas Comparison
I took my son to see Sleeping Beauty in panto yesterday (as you can see, we were pretty excited!). The…
Am I Okay?
Life with M.E and POTS: “It’s really hard but I’m okay. I’m okay. I’m okay. I’m okay. I’m okay. I’m…
Birthday present
Presents You would think after being chronically ill with M.E and POTS for nearly six years that I would learn…
Going ‘Out’ Out
With the festive season fast approaching and people’s social calendars filling up – I just realised I can’t remember the…
Locating My Inner Cockroach
You know those annoying insects that never die? Like, no matter how many times you whack it, it just wobbles…
ME Can Mean – Recurrent Infections OR Superhuman Immune System
ME can mean – recurrent infections OR superhuman immune system. I’ve been both. The only perk to my ME so…
ME Can Mean – Difficulty Speaking
ME can mean – Difficulty speaking. I can normally find analogies to explain most of my symptoms of ME, but…
Chronic Illness and Cancer … (like Ant and Dec, except not as funny)
It’s official: we have no healthy adults left in our household to run the show. Responsible? Probably. Healthy? Hell no.…
In Sickness and Un-Health: – Pete’s Predicament
Pete, my partner, is a bit of a hero really, given how well he’s looked after me over the years…
My Lovely Day Off … ?
My Lovely Day Off Everyone needs a ‘me day’ from time to time. Yesterday was mine. I was right looking…
Will She Marry M.E?
I decided to write about someone else for a change! This is the touching true story of my friend Juan’s…
Copywrite Or Hasty Shite … Who Am I?
Being housebound for several years, missing from society, and now finally in a position to re-join the world – and…
When the Storm Breaks
I’m showered! Thank fuck for that. Thought I’d update on how I’m doing today – and the answer is: much…
Crashing Fears
Really struggling – Day 5. I’m used to my symptoms fluctuating from one day to the next, and also within…
Happy Birthday To Me!
Happy birthday to me! And this is a VERY special one. For those who don’t know, I was a HUGE…
Sporadic Communication
The physical aspects of chronic illness can be brutal. But so can the cognitive aspects. Here, I discuss how brain…
Travel Worries
From June 10th 2022: And here’s the thing with chronic illness – you can’t just go for a trip away,…
Butterfly Days
From June 4th 2022: It’s been a rough 11 days since wedding dress shopping day. Health has been up and…
The Day After…
From May 25th 2022: Oooof, I feel rough today. As was totally predictable, my health is now paying the price…
I Said Yes To The Dress!
From May 24th 2022: Today was such a momentous occasion for me (and my mum!) I’ve been waiting 4 years…
Millions Missing
From May 12th 2022: It’s been 4 years since Pete travelled to London with my trainers and stood up to…
Holy Mother of …
From May 6th 2022 Is it nearly bedtime yet? I mean, my evening bedtime. Not my afternoon bedtime. (Anyone would…
Messy Play, Messed Up Me
From April 19th 2022 And here’s today’s chronically craptastic awareness raising anecdote: I took my son somewhere new to play…
Personal Hygiene
Being chronically ill is hard enough, without being chronically crusty as well. Here, I discuss my personal hygiene hurdles from…
Journey to Diagnosis – Part 3
This post concludes my three-part journey to a diagnosis of M.E and POTS.
Journey to Diagnosis – Part 2
My journey to diagnosis was all-encompassing, and my health deteriorated throughout. It was pretty crap – although I hope my…
Journey to Diagnosis – Part 1
Here, I describe the lead up to realising I was unwell. It wasn’t a quick realisation; it kind of crept…
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