Now you see ME … Now you don’t
No-one knows gratitude quite like a person who has been lucky enough to claw their way back up to Mild…
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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
Pretend Going Out
What do you do when you need some ‘me time’ away from your family, but your ME won’t let you…
What do Marriage and Chronic Illness have in common?
Q: What do Marriage and Chronic Illness have in common? A: Lifelong commitment. One, I entered into happily – whereas…
What I didn’t say
Ever look back on a conversation and wonder why you did or didn’t say a particular thing? Yeah, me too.…
Parenting from bed. With help from … Alexa?!
I’m crashing today, and I’ve reached the point where I simply have to be in bed. But … how can…
Why am I looking so smug?
Why am I looking so smug? … Well, I just removed my makeup in under 1 minute. That’s why! And…
Ever wondered what the best weapon would be for beating yourself round the head?
Ever wondered what the best weapon would be for beating yourself round the head? … Yeah, me neither. Yet recently,…
My face and half of Pete’s head made a magazine front cover!
Now THAT was a pleasant surprise. Not that the arrival of the latest edition of ME Essentials magazine isn’t a…
Stop, Notice, Love.
I’ve been a very busy girl of late. Busier than someone with ME/POTS should be. My body asked me to…
Old Dog, New Trick
Last year, O asked me to knit him a ‘rainbow’ blanket – and I was happy to oblige! Now, 8…
Showering: self-care or self-sabotage?
Sometimes, I can’t quite tell the difference between ‘lazy Sunday morning’ relaxed, and ‘your body doesn’t feel like doing much…
Getting Wed … In Bed?!
Planning a wedding around chronic illness, as it pans out … is a logistical nightmare. Here, I highlight a few…
Guess my memory has officially left the building:
The other day, I was waiting with the other parents at school pick up. I saw my friend and gave…
New Year, New Followers (Hooray!)
“God, you’re SO lucky. I wish I struggled to brush my teeth sometimes and had to choose between a shower…
Ending 2023 on a High
APPARENTLY, I’m ending 2023 on a high. … A sugar high. Still, aside from stuffing my face with enough chocolate,…
Crystal Ball Christmas
If M.E has taught me anything, it’s that time is not a given. That, and fear of relapse is a…
SHIT. My earplugs are breaking … PANIC!!
Most people with M.E and/or POTS have SOME sort of aid they simply cannot live without. Mine is my earplugs.
Chronic illness = letting people down.
So, I’m in this not-so-fun predicament today where I kinda need to choose between my partner (Pete) or my five-year-old…
Miracles DO happen!
Yesterday was a VERY rare day for me. I was almost entirely symptom free. And now, I’m just flabbergasted.
Six things I learned from my time in a wheelchair
Wheelchairs are great. We all know that. Still, as with most things in life … it’s not all spokey dokeys…
Compassion for … Compassion Fatigue?!
“All you ever talk about is your health.” Have any of you had these hurtful words uttered to you? I…
Becoming an Ambulatory Wheelchair User: The Choice.
Once upon a time, back when my ME/POTS was severe, I used an electric wheelchair on the rare occasions I…
It’s That Time of Year Again
It’s that time of year again. And I don’t mean Chris Rea starting his drive home for Christmas at the…
Conversations with POTS: Standing up for Not Standing Up
“F**k, I don’t feel so good. I really need to sit or lie down. Like, RIGHT NOW. This is what…
I fucked up. And that’s okay.
“You’re going to be okay. You’re going to be okay. You’re going to be okay.” “… But, what if I’m…
Couch to 5K, X-Ray … or ummm … Back to the Couch?
A few weeks ago, I downloaded the NHS Couch to 5K app. I had this ‘great’ idea that I would…
Sometimes … it’s just nice.
Sometimes it’s just: Nice to wear makeup and straighten my hair.Nice to be out in the fresh air, doing ‘normal’…
Survivor’s Guilt
A few years ago, when my ME/POTS was Severe, I could only dream of doing the things I can now.…
Adrenaline, False Sense of Health, and Superhuman Willpower
I REALLY wanted to take O to the Junior Park Run yesterday. My mind felt totally ready. My body felt…
Chronic illness changes a person. But who?
ME/POTS has definitely altered my priorities in life and imposed limitations on my capabilities. However, I am still the same…
Burden or Team Mate?
“When you first got sick, did you worry I would leave you?” Pete asked me this recently, when he was…
My Baby Starts School Today. He’s ready … but am I?
O can’t possibly be starting school. We need more time, because, well … I’m not done making up for the…
PIP: In Your Own Words
I’d like to say I was shocked by the comments I received in response to my ‘Disability Benefits – End…
DNA delivered in 2mls of spit!
I’ve done it! I’ve contributed to the world’s largest genetic study of M.E. Here, I summarise the bumpy road for…
M.E, Motherhood, and Missing Out on ‘Firsts.’
Our children’s ‘firsts’ are important milestones in their rapid development – which is why it’s so heartbreaking when M.E stops…
M.E and Birthday Thievery
It’s my birthday – hooray! Except, thanks to three years of Severe ME / POTS, I’m a little unsure of…
Disability Benefits – End of an Era:
PIP (disability benefits) are a financial lifeline to many people with ME/POTS. So what happens when you no longer qualify,…
Chronic Illness and Mental Load:
‘Mental load’ is something most women have to deal with. It is HARD to manage with M.E, given that merely…
Chronic Illness and New Projects:
Taking on new projects or responsibilities can be exciting. But if you suffer with M.E and/or POTS, then be prepared…
Drink the ‘Good’ Wine
When I was healthy, I had one or two bottles of ‘good’ wine put aside – for years on end…
More Firsts!
We did another ‘thing’ as a family recently: a road trip to Oxford for Pete’s cousin’s birthday bash. I haven’t…
The Creases of Chronic Illness:
Here I discuss my son’s reaction to seeing an ironing board for the first time, and why it’s taken 4…
Myself vs. Reality
M.E and self-doubt. Why, after all these years do I STILL question my reality?
Overheating: A Quick Fix
People with ME and/or POTS have body’s that struggle with temperature regulation – and I am no exception.
IV hydrating fluids? Hit me up!!
The last time I had an anaesthetic, it didn’t end well for me. So this time, I wanted it to…
The ‘Procedure’ Went Well … (albeit my face forgot to tell the camera that!)
Monday’s procedure of stretching my wee shoot to help alleviate symptoms of Overactive Bladder (OAB) went well. The technical name…
Surgery Day
I’m having surgery today. Yet, I’m not worried about the procedure itself; I’m worried about the anaesthetic. Here, I explain…
PEM: The Aftermath
I rather stupidly thought I’d gotten away with it. ‘It’ being our trip away to see friends. Tut tut. Silly…
Chronic Illness, Identity Loss … and Lizards
Chronic illness can be a massive threat to our identity. So, what happens when everything that makes you ‘you’ goes…
Chronic Illness and Happiness
Chronic illness and happiness. Here I discuss how Severe ME and POTS has influenced the joy in my life now…
M.E ‘Warriors’
M.E ‘warriors’. The term grates on me on a visceral level, and makes me wanna scream until I puke. But,…
All Hail the Plastic Plate!
Plastic plates. Who would have thought they could be a useful piece of equipment for anything other than camping and…
Corpse or POTS?
If you went walking up on the Yorkshire moors today, you might have stumbled across a body. Twice. A motionless,…
The Curse of the Blue Badge (Disabled Parking Permits) …
Unless you blatantly ‘look’ disabled, then Disabled Parking Permits are both a blessing and a curse. The blessings are obvious.…
Lego Wheelchairs: A Proud Mummy Moment
My son was looking at pictures of Lego the other day, when suddenly his face lit up, his eyes went…
Chronic Illness and Social Media: A Love Story (… well, sort of)
Social Media: people often talk about the negatives … but what about the positives? Imagine the ‘olden days,’ before the…
M.E Can Mean … Blaming Myself
For me, one of the hardest aspects of becoming unwell with ME is not knowing whether I’m wholly to blame…
Severe M.E and Mobile Hairdressers: Fuck Yes or Fuck No?
I was at the hairdressers the other week, having my usual colour and trim. As I sat there, watching my…
Severe M.E, TV and a Side Order of Jealousy: A Memory:
Severe M.E, TV and a Side Order of Jealousy: A Memory: Back when I was housebound due to Severe M.E…
Award-Winning …. Disability Benefits.
Disability benefits. Let me just go and prepare my acceptance speech …
Six Years of Sickness
This weekend marks my 6 year anniversary of getting sick and never recovering. It was Mother’s Day weekend in 2017…
Enjoy Simple Pleasures
In the same way our bodies need food for survival, simple pleasures are essential for the wellbeing of our souls.
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…
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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