Initial DNA results from the world’s largest DecodeME study are in – and the results are rather marvellous indeed! People with ME have every reason to feel hopeful for a brighter future. So … why do I feel so ‘meh’…
“It’s really good after all these years and everything we’ve been through, that we can still vaguely enjoy each other’s company.” ~ Pete. Now, these are definitely not the most romantic utterings I’ve ever heard. However, with ME/POTS hanging around…
I did something I haven’t done in about 9 years recently – and I was SO excited! … until my POTS came along and dropped a steaming turd all over it, that is.
We made it to one year as Mr & Mrs! Whoop whoop! Here, I’ve created a short video and written something a little different to my norm, in the hopes of capturing the sunshine, shit-storms, and rainbows along the road…
Bike riding, along with a million other things, kinda went for a swim in the sewer of life when I got sick over 8 years ago. Little did I know then, that 8 years later, I’d be plunging my bike…
I remember the very first time I came home to Pete. We’d been living together for three years by that point.
I found myself doing something kinda ridiculous on a long weekend away last year. There I was, getting out of our mega-comfy hotel bed in the middle of the night to scrabble around the room in the dark, frantically looking…
Who’s THAT girl? Okay, so clearly, she’s me. But I just don’t get it; how could I possibly have been her only a few weeks ago? She looks so … healthy.
Here, I demonstrate how not to survive the Easter school holidays with ME/POTS.
I remember vividly the day I stopped living. It was Mother’s Day, 2017.
“You’ve been doing too much.” Now, is it just me – or does anyone else with ME fucking hate it when someone says this to them?
A cute memory of O as a baby from six years ago appeared in my Facebook feed recently. This reminder brought to mind a whole bunch of other memories: ones of parenting with Severe ME that will stay with me…
Woohoo! Hear me roar!! Yes folks, brace yourself for something truly outstanding. Are you sitting down? Are you ready for my massive revelation? Okay, here goes … (Click to read on)
Fuck me, I did it! For the first time in 8 years – I finally went ‘out out.’ … And it was perfect! Though, the anxiety and turmoil I experienced in the lead up to this night out – was…
… ‘Out out’ of my mind with worry that is. It’s a fellow mummy friend’s birthday in a few days, and she’d like to let her hair down. And the best place to do this where we live is –…
“… Don’t project your weird beliefs on others!” This demand for me to silence myself formed part of a comment on Facebook recently. As such, I decided to have a little fun with it!
So there I was, merrily scrolling through Facebook on NYE, when I noticed something. It’s a recurring theme that I see every year, as people are wrapping up the old year and moving forward to the next. Read on to…
Just melt already, I can’t handle this any longer!! … The home schooling, that is. Not the snow and ice. It’s no secret that England really doesn’t know how to ‘winter’. First sign of snow and the country grinds to…
I’ve been struggling lately. I just feel so overwhelmed with trying to navigate life and the ‘mental load’, when my physical health has been trapped in the u-bend that separates wellness and umm … shit.
No-one knows gratitude quite like a person who has been lucky enough to claw their way back up to Mild ME after years of being housebound and/or bedridden with Severe ME. But here’s the thing …
What do you do when you need some ‘me time’ away from your family, but your ME won’t let you leave the house? Well you, umm … pretend to go out.
Q: What do Marriage and Chronic Illness have in common? A: Lifelong commitment. One, I entered into happily – whereas the other, can fuck right off.
Ever look back on a conversation and wonder why you did or didn’t say a particular thing? Yeah, me too. Here, I unload my thoughts on why I kept my mouth zipped recently.
I’m crashing today, and I’ve reached the point where I simply have to be in bed. But … how can I parent from bed?!
Why am I looking so smug? … Well, I just removed my makeup in under 1 minute. That’s why! And no, this is NOT an advert. It’s just little old, energy-limited, chronically ill me, wanting to share this absolute godsend…
Ever wondered what the best weapon would be for beating yourself round the head? … Yeah, me neither. Yet recently, I found out.
Now THAT was a pleasant surprise. Not that the arrival of the latest edition of ME Essentials magazine isn’t a pleasant surprise in itself; of course it is. It’s just EXTRA pleasant when I realise I’m in it! … Umm…
I’ve been a very busy girl of late. Busier than someone with ME/POTS should be. My body asked me to stop this week. So, I did – and this is when I started to notice stuff.
Last year, O asked me to knit him a ‘rainbow’ blanket – and I was happy to oblige! Now, 8 months later – this old dog is trying a new trick with said banket. And breaking my back in the…
Sometimes, I can’t quite tell the difference between ‘lazy Sunday morning’ relaxed, and ‘your body doesn’t feel like doing much because you’re chronically ill and fresh out of spoons’ relaxed. This is when I make unwise choices about simple things…
Planning a wedding around chronic illness, as it pans out … is a logistical nightmare. Here, I highlight a few considerations we’ve had to navigate on the road to becoming Pete’s future wife.
The other day, I was waiting with the other parents at school pick up. I saw my friend and gave her a big hug and said, “Happy new year! Feels like I haven’t seen you in ages!” To which she…
“God, you’re SO lucky. I wish I struggled to brush my teeth sometimes and had to choose between a shower or a social life. How can I make this happen for me?? I want it SO badly!” … said no-one…
APPARENTLY, I’m ending 2023 on a high. … A sugar high. Still, aside from stuffing my face with enough chocolate, mince pies, and cake to induce a diabetic coma – I think I can confidently say, this year has been…
If M.E has taught me anything, it’s that time is not a given. That, and fear of relapse is a real head-fuck.
Most people with M.E and/or POTS have SOME sort of aid they simply cannot live without. Mine is my earplugs.
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 son (O). Hmm …
Yesterday was a VERY rare day for me. I was almost entirely symptom free. And now, I’m just flabbergasted.
Wheelchairs are great. We all know that. Still, as with most things in life … it’s not all spokey dokeys and rainbows. So, here are six crappy things I never knew until I found myself in a wheelchair for three…
“All you ever talk about is your health.” Have any of you had these hurtful words uttered to you? I have … and I’m guessing many of you have too.
Once upon a time, back when my ME/POTS was severe, I used an electric wheelchair on the rare occasions I could leave the house. This was a truly difficult, no scrap that – I mean fucking awful – decision to…
It’s that time of year again. And I don’t mean Chris Rea starting his drive home for Christmas at the stroke of midnight on Halloween, Ho-Ho-Ho. No, I mean every October my ME gets a little worse and I start…
“F**k, I don’t feel so good. I really need to sit or lie down. Like, RIGHT NOW. This is what goes through my head every time I find myself in a situation where I need to have a meaningful conversation…
“You’re going to be okay. You’re going to be okay. You’re going to be okay.” “… But, what if I’m not? What then?” Those are the thoughts racing through my head, as I fight back the tears and terror of…
A few weeks ago, I downloaded the NHS Couch to 5K app. I had this ‘great’ idea that I would ease myself into running – and I was going to fucking ACE it! Unsurprisingly, it didn’t exactly go to plan.
Sometimes it’s just: Nice to wear makeup and straighten my hair.Nice to be out in the fresh air, doing ‘normal’ things.Nice to go on a group play date, and the other mums have zero clue I’ve been in bed crashing…
A few years ago, when my ME/POTS was Severe, I could only dream of doing the things I can now. Still, when it comes to sharing my joys and triumphs on social media … I always feel a bit guilty.
I REALLY wanted to take O to the Junior Park Run yesterday. My mind felt totally ready. My body felt a little tired – but – I could feel the dregs of Saturday’s adrenaline still clinging to my body like…
ME/POTS has definitely altered my priorities in life and imposed limitations on my capabilities. However, I am still the same person I always was in terms of personality and lust for life. Still, something (well, someone) has changed: … Pete.
“When you first got sick, did you worry I would leave you?” Pete asked me this recently, when he was in bed with a virus and I was looking after him.
O can’t possibly be starting school. We need more time, because, well … I’m not done making up for the time we lost.
I’d like to say I was shocked by the comments I received in response to my ‘Disability Benefits – End of an Era’ post the other week, but sadly, I wasn’t. I’ve therefore decided to crank the volume up on…
I’ve done it! I’ve contributed to the world’s largest genetic study of M.E. Here, I summarise the bumpy road for our community leading up to this M.E milestone.
Our children’s ‘firsts’ are important milestones in their rapid development – which is why it’s so heartbreaking when M.E stops us from witnessing them. Here, I talk about the recent ‘first’ I missed out on.
It’s my birthday – hooray! Except, thanks to three years of Severe ME / POTS, I’m a little unsure of my age.
PIP (disability benefits) are a financial lifeline to many people with ME/POTS. So what happens when you no longer qualify, yet you’re not well enough to work?
‘Mental load’ is something most women have to deal with. It is HARD to manage with M.E, given that merely ‘thinking’ can exacerbate numerous symptoms. Here, I discuss how I manage my mental load.
Taking on new projects or responsibilities can be exciting. But if you suffer with M.E and/or POTS, then be prepared for a little Mind vs Body backlash.
When I was healthy, I had one or two bottles of ‘good’ wine put aside – for years on end – ready for an occasion where I felt ‘deserving of it or like I’d ‘earned’ it. Not anymore. Nowadays, I…
We did another ‘thing’ as a family recently: a road trip to Oxford for Pete’s cousin’s birthday bash. I haven’t been to a large social gathering since before getting sick over six years ago. It’s been a looong time. It…
Here I discuss my son’s reaction to seeing an ironing board for the first time, and why it’s taken 4 years for the concept of ironing to (finally!) enter his radar.
M.E and self-doubt. Why, after all these years do I STILL question my reality?
People with ME and/or POTS have body’s that struggle with temperature regulation – and I am no exception.
The last time I had an anaesthetic, it didn’t end well for me. So this time, I wanted it to be different.
Monday’s procedure of stretching my wee shoot to help alleviate symptoms of Overactive Bladder (OAB) went well. The technical name for this procedure is ‘Urethral Dilatation’. No slicing, dicing, or removal of anything involved. Just go up my pee shoot,…
I’m having surgery today. Yet, I’m not worried about the procedure itself; I’m worried about the anaesthetic. Here, I explain why …
I rather stupidly thought I’d gotten away with it. ‘It’ being our trip away to see friends. Tut tut. Silly me.
Chronic illness can be a massive threat to our identity. So, what happens when everything that makes you ‘you’ goes missing? … You channel your inner lizard.
Chronic illness and happiness. Here I discuss how Severe ME and POTS has influenced the joy in my life now my health has improved.
M.E ‘warriors’. The term grates on me on a visceral level, and makes me wanna scream until I puke. But, why is that?
Plastic plates. Who would have thought they could be a useful piece of equipment for anything other than camping and small children? Certainly not me. Well, not me before M.E. … Nowadays however, I think they’re bloomin’ fantastic!
If you went walking up on the Yorkshire moors today, you might have stumbled across a body. Twice. A motionless, random body … just laying there like a corpse.
Unless you blatantly ‘look’ disabled, then Disabled Parking Permits are both a blessing and a curse. The blessings are obvious. So here, I discuss the curses.
My son was looking at pictures of Lego the other day, when suddenly his face lit up, his eyes went all wide, and he became very excited. Read on to find out why. (Hint … it has something to do…
Social Media: people often talk about the negatives … but what about the positives? Imagine the ‘olden days,’ before the advent of social media. A time when chronically ill and/or disabled people had to rely solely on nearby friends and…
For me, one of the hardest aspects of becoming unwell with ME is not knowing whether I’m wholly to blame for the situation I’m in.
Severe M.E, TV and a Side Order of Jealousy: A Memory: Back when I was housebound due to Severe M.E and POTS, I could only handle watching TV for 10 mins a day. Any longer than this would be sensory…
Disability benefits. Let me just go and prepare my acceptance speech …
This weekend marks my 6 year anniversary of getting sick and never recovering. It was Mother’s Day weekend in 2017 and my mum had travelled up to spend a long weekend with me. I lived in the city, so we…
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? POTS is a form of dysautonomia (autonomic nervous system dysfunction) which affects many bodily systems, but especially heart rate. Simply standing up can send our heart rates into outer space. As such, many…
M.E can mean – regularly questioning whether I’ve been imagining the whole thing all along … for SIX YEARS.It’s got to be one of the biggest head fucks out there, and goes a little like this: I feel pretty good…
I used to spend so much energy I didn’t have researching every little thing, in the hopes I would find a solution to my M.E – and ultimately, my suffering. It was fucking exhausting. Read on to find out what…
Post-exertional recovery with M.E. It goes a little like this: Healthy person: ‘Hey friend, fancy meeting up today for a coffee and a catch up?’ Person with M.E: ‘Hey you, umm I would really love to … ‘ Healthy person:…
Brain fog is a brutal symptom of ME and POTS, and one of the hardest things to explain. But I’m going to try anyway. Using a brick wall instead of fog.
POTS and ME can both mean Overactive Bladder (OAB) No-one under 75 really expects to have bladder issues. I mean yeah, those of us who have given birth might accidentally piss ourselves whilst jumping on the trampoline with our offspring,…
Is your past self proud of you? How about your future self – do they get a high-five?
What Would You Like For Christmas? I can normally answer this question from Pete, my other half, pretty easily. There’s normally SOMETHING I’d like under the tree each year (shiny and pretty, ideally!) But this year is different. This year…
I took my son to see Sleeping Beauty in panto yesterday (as you can see, we were pretty excited!). The performance was fantastic. Afterwards, I got thinking about the everyday pantomime that is parenting with ME and POTS. And here…
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 okay. I’m okay. I’m struggling a bit – but I’m okay. I’m okay. I’m okay. I’m okay.” (Has a massive…
Presents You would think after being chronically ill with M.E and POTS for nearly six years that I would learn to tailor my present wish list for the life I lead now … not the life I used to lead.…
With the festive season fast approaching and people’s social calendars filling up – I just realised I can’t remember the last time I went ‘out’ out. What I do know is … it’s been many many years years. This blog…
You know those annoying insects that never die? Like, no matter how many times you whack it, it just wobbles around with missing wings and limbs – refusing to die. Cockroaches I think. Anyways, between the chronic illness, infections and…
ME can mean – recurrent infections OR superhuman immune system. I’ve been both. The only perk to my ME so far over the years has been my superhuman ability to never (well, very rarely) get a cold or any other…
ME can mean – Difficulty speaking. I can normally find analogies to explain most of my symptoms of ME, but I really struggle to find one to explain what happened to me this morning: losing my ability to speak. It’s…
My Lovely Day Off Everyone needs a ‘me day’ from time to time. Yesterday was mine. I was right looking forward to it. It got off to a great start. For the first time in 6 weeks (!!), I finally…
I’m showered! Thank fuck for that. Thought I’d update on how I’m doing today – and the answer is: much better. Not completely back to my version of normal (my stomach still feels very delicate) but certainly heading in the…
Really struggling – Day 5. I’m used to my symptoms fluctuating from one day to the next, and also within the same day. I’m used to my symptoms flaring up for several consecutive days after over-exerting myself. Sometimes it can…
Happy birthday to me! And this is a VERY special one. For those who don’t know, I was a HUGE gym junkie before I got sick. I was in the best shape of my life – radiating health, strength, and…
The physical aspects of chronic illness can be brutal. But so can the cognitive aspects. Here, I discuss how brain fog causes my written communication to be so darn difficult.
From June 10th 2022: And here’s the thing with chronic illness – you can’t just go for a trip away, with a worry-free mindset. Not even to spend a few days with family. Excited – definitely! But not worry free.…
From June 4th 2022: It’s been a rough 11 days since wedding dress shopping day. Health has been up and down, but mostly down. However, while that’s been going on, we had some chrysalides that hatched into beautiful butterflies a…
From May 25th 2022: Oooof, I feel rough today. As was totally predictable, my health is now paying the price for my big day out wedding dress shopping yesterday. I feel utterly hungover – except minus the alcohol, and utterly…
From May 24th 2022: Today was such a momentous occasion for me (and my mum!) I’ve been waiting 4 years to go wedding dress shopping. Myself and Pete got engaged at a point when I couldn’t even get dressed –…
From May 12th 2022: It’s been 4 years since Pete travelled to London with my trainers and stood up to tell our story at Millions Missing (while I was at home, pregnant, and too ill to go with him, my…
From May 6th 2022 Is it nearly bedtime yet? I mean, my evening bedtime. Not my afternoon bedtime. (Anyone would think I’M the three-year-old in this anecdote). When I go for my afternoon bedtime, my son usually has some quiet…
From April 19th 2022 And here’s today’s chronically craptastic awareness raising anecdote: I took my son somewhere new to play today. He loved it – lots of variety with toys, sensory and messy play. It was fantastic for him. And…
