Close up of a packaged Cadbury's Mini-Roll on a dark wooden table. Packaging features the phrase "I'm on a Roll"
Advocacy, creative writing, M.E, Politics, Social change

Mini-roll

M.E. Life, politics and social angst

Not much time and/or energy? Go straight to latest entry here. Each entry is usually no more than 2-3 mins to read.


What is a mini-roll?

Inspired by the UK “mini” Budget, I’m starting a series of “mini” blog posts about living with M.E. The difference will be that my posts are unlikely to defenestrate the pound and blue-screen the economy whilst also rewarding my backers and followers with juicy tax cuts and policy roll-backs.

Instead, they will be probably be slightly longer than a short tweet thread, focussed on my every day experience of living with M.E. and the desire to participate more in political debate and social change. Hopefully, funny and engaging, or at least entertaining enough to hold your attention for a minute or so.

In the meantime, if you want to know more about living with M.E. (Myalgic Encephalomyelitis) I have a page of useful links here

(Entries in reverse chronological order)


25th November: Mini-roll mini-break

“Do it every day apart from the days you don’t” has been a useful mantra for me either to start and maintain a new routine or do something different to break a habit. It might sound like a cop out to you but, when you are chronically ill, it is more like permission to be gentle to yourself when you have embarked on a change and got yourself into a rhythm. One that comes to an abrupt stop due to symptom exercerbation known as a “crash” or PEM.

These mini-roll entries have not quite been every day but certainly regular. Unfortunately they will become less so as I need to take a break, hopefully a mini-break, to try and get this latest slide down the snake (chute if you are American) under control.

In the meantime, if you find yourself here and you either want to know more about M.E, or are having symptoms similar to those described here please check out my Living With M.E. page for more information and resources.

Back soon, once I find a, no doubt, rickety and spindly new ladder to climb…

22nd November: Not Good Vibrations

I am not doing too well with writing at the moment. Over the last few days, possibly a week, I seem to be developing an internal tremor. Barely noticeable on the outside (I have never had the steadiest of hands) but inside it feels like someone has buried many tiny mobile phones deep inside and they are all ringing on vibrate. Occasionally this manifests outwardly with extreme clumsiness, losing my grip on things and writing backwards (this entry is being tapped out on one finger with a healthy amount of backspace backspace backspace).

My current hypothesis is that I have one set of symptoms (M.E.) influencing the other (perimenopause) but unlikely that hypothesis will be confirmed by any research I can find. Research on perimenopause is still scant and we already know M.E is the same if not worse, so the middle of that particular Venn diagram is whatever scant multiplied by scant is. Is there a word for just a hair above non-existent?

Why that is, is for a different time when I have more energy and coordination. For now, I just have to hope this is just some random convergence rather than any form of progression. That GP appointment is looking for more likely though.

As is the dread of attempting to book one.


18th November: Signposts and Lifelines

Another day of needing to stay as still as possible but unfortunately less of a clear head now than yesterday. Most likely because I have spent the morning adding people to Mastodon from Twitter and signposting ways to find each other if, as seems to be the case, Twitter implodes in the next 48 hours. There is such a potent stewing pot of emotions on there right now – anger, sadness, fear of loss of connection, frustration, confusion, even a sense of panic – as it feels like a mass eviction. We do only have rumour and retweets to go on, but for someone who relies on this particular social media for a feeling of human connection as well as vital information about my medical condition, it is too much of a risk to cross my fingers and hope it will all be ok. Last time I did that we ended up with Brexit and one of those narcissistic blondebabies in the Whitehouse.

I also have to archive 13 years of data from when I first signed up all dewy-eyed to this new micro-blogging platform. I hadn’t a clue what I was doing, a bit like Mastodon now. I never really understood the power of it until at least 10 years after sending my first tweet, and when I did it became one of the most important tools to survive in this world that I had. I found a community who have been best friends, confidantes, counsellors, advocates, comedians, teachers, classmates, workmates and in some cases lifelines. Just a quick scroll of my newsfeed contains more useful information about M.E. and Long Covid than a lifetime of visits to GPs and so-called specialist clinics. And I have had the confidence to reach out to people I would never dream of contacting, finding and using my voice, sharing, exchanging and some times changing my views because of the perspectives of people around the world. Mastodon may provide some of that but it won’t be the same. All because of the hubris of one man and our political leaders inability to control extreme wealth and allow such outrageous concentrations of power.

My jury was out on Musk but no longer. May Twitter become a cautionary tale for all would-be billionaire techbros out there, and may billionaire techbros become a cautionary tale for us all.


17th November: Budget euphemisms and Lords a leaping.

My M.E. symptoms are continuing to take a strange path right now so I have had to stay as still as possible all day. My brain however has stayed pretty clear so I have been able to take in two significant events.

First was the budget, sorry, Autumn Statement, or whatever euphemistic phrase they have come up with now for “We’re all f*cked cause we f*cked it”. Jeremy ‘I’m a nice guy really just don’t upset my markets’ Hunt was doing his best impression of a compassionate conservative and laying out how everyone would take the hit. Obviously not really everyone but we are not supposed to notice that. I did however notice how he has managed to find a nice chunk of change, £280 million, to continue to harass people on Universal Credit with Job Coaches. Another euphemistic phrase for someone paid to make you feel more shit about being poor, sick or disabled or all of the above. For reference, that £280 million is more than five times the amount of money allocated to research into Long Covid (£50 million) so we can see that their priorities have shifted as much as I have from my bed today. (That’s not at all).

Slightly related, and better news, I then watched the debate on Long Covid in the House of Lords. It’s frustrating that an antiquated and often nepotistic body of people seem to get the scale of the problem more than elected government and seem much more informed, but at least they can be heard more than someone writing a sarcastic and satirical blog about the problem with a whopping 15 views a day. So, if you, like me, need to stay still but have a moderately clear brain, I recommend giving it a listen. It is very gentle and there is no braying and name calling like the playground, sorry House of Commons. A bit like being on Mastodon rather than the hell site known as Elon’s Twitter.

Good to see support for both Long Covid and M.E from all sides of the political spectrum too. It gave me a little hope that things are changing. Not in the government though which I worry have added a caveat to the definition of compassion to the OED which now reads “only towards the economically active, or if you identify as as market.” I better go check, just in case.


16th November: Bullies – inside and out

I have been listening to a few politics podcasts today which have been been exploring bullying and the allegations against Dominic “Winky-face” Raab. He has always looked like one of those handsome in a certain light, slick and charming love interests in an 90s ever-so British romcom that turns out to be a “cad” and a “chancer”, so I am not surprised. But, with my ex-HR hat on, and as there is going to be a formal independent investigation, I need to point out I am not claiming he is in any way a discount Daniel Cleaver but just to me he has always looked like one. Besides, according to ex-minister George What’s-the-Eustice, on yesterday’s The News Agents podcast, he does a lot of exercise so that might explain why he may come across as an “exacting” boss. Clearly exercise has a lot to answer for. Maybe people are starting to come around to its potential evils after all.

On a more serious note maybe people are coming around to the idea that putting toxic, strongmen or women in positions of power where they can terrorise people, considered by virtue of a confected hierarchy to be below them, is neither an example of good management, nor more importantly for the STory Party, helpful to the narrative of compassionate conservatism. Time (and possibly Sue Gray) will tell.

As for me, I have to go back and deal with my own bully now. The one that terrorises me from the inside. It is an apt analogy as M.E. fits a lot of the bully tropes: it kicks you when you are down and hold you there sometimes sitting square and heavy on your chest so you can’t breathe, it can go away for a while making you think you are free and clear until it sneaks out from behind you and clobbers you over your head until your ears ring, and it steals your lunch money, well, ok, not quite, but it steals your ability to earn money and makes you empty your pockets paying for expensive supplements and treatments that your GP refuses to provide.

One day we will root out our bullies though, I am sure of it. Whether our government can do the same I am less certain. Make that not certain at all.


15th November: Facing up to time and reality

I’m in a reflective mood. I have been asking myself if I am fully facing the reality of my condition, or am I still finding ways to bypass “what is” in favour of what was or what I’d like it to be.

I was only what is termed ‘mildly’ affected by M.E. up to 2020 then the first bout of Covid weakened me. In 2021 the jab accelerated that decline until I became mostly housebound and only able to be active three hours a day. My “usable time“. Lately, that is declining too and the reality is now more than one to two hours a day.

And I dearly want to be busy and fill every day with things to do and people to see. It’s one of the hardest things about managing a condition where only effective treatment that works for me is getting enough rest in my day. Strategic rest. Aggressive rest. Tactical rest. Whatever I choose to call it, it means not doing anything. Some days that is because I am so depleted that doing anything is not optional but on other days, like today, it’s forcing myself to stay still so I can do something another time, or recover from doing something previously. Either way, it means for me and many others that so much is never done – calls never made, messages never sent, journeys never taken, projects never started, writing never written. A great deal of life never lived.

But, for now, I have to face “what is” and the tiny window of time that I have. Then, I want to find space to be grateful for that (not there yet) and go from there. It might not be what I had or what I want but, whether it’s these sarcastic mini-rolls or another project, it could be a little bit of something to build on, in the reality I do have to live with, every day.


14th November: Studies in denialism, gains nothing.

I received an invite to a study yesterday on interventions to support immune defences. Great news…? Sadly, no. My surgery had recommended me for this study as “someone who has a health condition” and just guess what one of the interventions is?

Points for you if you guessed some form of activity or exercise. Yes, one of the interventions is providing advice on getting more active. To someone with M.E. who, gets worse after exertion (ie any exercise, activity beyond their broken body’s capacity), this is like providing advice on a range of peanut-based health snacks for someone who is allergic to nuts.

But that is not a message we, those that live every day with the condition, seem to be able to get through. This is due, mostly, to a very specific group of people I am going to call “M.E deniers”: – a small but densely-formed group of Professors and clinicians who, like their cousins climate and election deniers, all cling on to their subjective worldview so they don’t have to face the objective truth despite ample evidence. They pump out their messages that M.E. isn’t biomedical, that people with M.E just need to push through and just stop enjoying their secondary gains of being forced to stay perfectly still and silent in darkened rooms, restrict interaction with friends and loved ones, and give up fulfilling careers and interests. (That was sarcasm, just in case you missed it)

We will keep going though – reading up on research, pointing out the absurdity of these deniers, trying to come up with analogies that stick. Eventually, this form of denial will disappear into history along with Flat-Earthers and Stop the Steal. We will keep focussing on the studies that are looking for biomedical treatments and the growing group of clinicians who are looking for a cure. And I’ll take a deep breath, bite my tongue, politely decline this study, and remind them of a not-so little thing called PEM.


11th November: Sickness, midterms, and a return to ‘normal’

Day three of GI issues which may be a sickness bug or an M.E. symptom. There is just no point trying to work out what has caused this as I don’t have the energy and there are far too many dead ends to run into if I started trying to figure it out. And considering I already feel like I have run headlong into a brick wall I am giving up before I start.

All I have managed to do for the last few days is sleep, listen to podcasts, and follow the US midterms results with a quiet relief. It looks like most of the crazies were kept out of office and the worry of a lurch to the right ended up as more of a slight stagger, a stop, then an attempt to stand up straight. It’s a start, and may something we will begin to see here too.

Hopefully that’s it for now. The time of the narcissistic blondebabies is over and we can move back towards normal politics – perhaps a bit of subtle policy sabotage, some light fiddling of expenses, or being caught in a compromising position browsing jpegs of tractors, all politely sandwiched in between passing legislation distasteful to at least or nearly half of the population.

Or democracy, as it is otherwise known.

Off for another nap, see you next week.

8th November: Eclipses, strange lands and Health Supremacy

It’s a lunar eclipse today. Specifically, the Scorpio sun is conjunct Mercury and Venus and is in opposition to the Taurus Moon, which is also conjunct Uranus, and both are square to Saturn in Aquarius. This creates a powerful T-square of pressure and – wait, what? You are probably wondering if you clicked on the wrong link but sorry, no, it’s me and this is the mini-roll. Don’t worry though the politics and sarcasm is coming.

Yes I am one of “them”. A crystal-loving tree-hugging hippy with a passion for all things unexplained and currently unexplainable (especially the mystery that is 12 years of Tory rule, why Liz Truss, and surely the only explanation for Michael Fabricant is aliens). It’s an interesting world to inhabit – on one hemisphere complementary therapy, world wisdom traditions and astrology and on the other politics, economics and scientific progress especially around complex diseases – and I am often crossing from one side to the other and back again. It gives me the perspective I call “Pro science, pro magic, anti-bullsh*t” which means I can often find myself being used as collateral in arguments for either position. Vaccinations is a good example. I am pro vaccines but was injured by one so people against vaccines use me as a cautionary tale, and people pro vaccines, well they just ignore me and pretend I don’t exist. Another example are certain views about complementary therapies which I resonate with, like the craniosacral therapy I had today, where one side thinks it’s pure hokum and the other might try and tell me “Illness is a story you tell yourself, Kirstie”. Both responses are just as unhelpful and just as superior i.e “I have the answer, you don’t”, and are a thin veneer for something much more murky underneath…

On my excursion to Mastadon yesterday, a friend in the M.E. community sent me this article which has really got me thinking. It applies to all of us on any side of the debate and relates to the political inability to take Long Covid and M.E. seriously. The author of this article calls this problem of superiority, ‘Health Supremacy’, and highlights how much work we as a society have to do regarding our treatment of sick and disabled people. So yes, whether you are pro science, pro magic or your Moon is in Uranus this means you. None of us have got this right yet. (PwME: It’s a 13 minute read so make sure you have enough time/energy for it)

I won’t go into it now, the article explains it so much better but I will leave you with these questions:

What do you think of sick people?

…Especially those that do not get better?

…Especially those that you may have to accommodate in some way (special food, wearing a mask, changing the way you interact with them etc).

…What do you really think, deep down, where it’s less comfortable? No, come on, deeper than that.

…Now, ask yourself, where do you think all that comes from?


7th November: Kangaroos and Mastodons

There have been so many Monday mornings now where I have had high hopes for the day but instead have woke up to continuing debilitating symptoms. This morning it’s the blasted pain flare in my head, muscle weakness with some fun random spasms all over and very sore lymph nodes under my arms.

The sore lymph nodes I can directly trace back to 12 hours after the jab last year and stayed with me not for days or weeks but months after. They calmed down around January this year but for some reason came back a few weeks ago. I probably will have to make an appointment to see my GP again if this continues but anything useful coming out of that is as likely as a certain ex Health Secretary reviving his political career by eating a kangaroo’s privates.

Symptoms aside, I have been on an interesting adventure over the weekend, through a virtual world/social network known as Mastodon. Tweets have been all a-twitter lately with concerns the new owner will mess it up so badly it becomes unworkable so there has been a trek of Twitterers heading over to other similar platforms as either an indictment on Musk or contingency plans if Twitter goes t*ts up, as well as satisfying that good old fashioned human trait of curiosity.

I fall into the second two camps, my jury is still out on Musk but as I mentioned in an earlier entry, platforms like Twitter are often the only way people with M.E. can engage with the world so if that goes it will be devastating. Not sure it will be the last few years have taught me anything is possible (even the highly improbable such as Hancock being the future Chair of the Tory party) so contingency plan it is.

If you want to come see for yourself you can find me wandering around and figuring out how the whole thing works here. Maybe see you there!


4th November: Quiet gloom and perverse respite

I am relieved to report that the pain flare is continuing to subside and my humour is returning. So, as it’s almost the weekend and I have barely mentioned it this week, I thought I might try a bit of sarcasm and satire to round off what has been a thoroughly miserable week.

Not only have I had a horrendous one, I get a sense that, whilst there was the good news about Lula in Brazil, there has been plenty gloom to go around in other parts of the world this week. Here in the UK too in what has been the relative quiet of Tories being predictably Tory as opposed to the unpredictable demented variant of Tory we have been subjected to recently. We do still have to deal with the remnants of that demented strain floating about – or in the case of our Lights-on-but- no-one’s-at-Home Secretary, roaring about (in expensive military helicopters)- trying her best to provoke us into a fever of moral outrage, but it doesn’t appear anyone is really taking her particularly rancid bait.

It does feel strangely quiet though, which may have something to do with pain signals no longer screaming in my head but may also be that the old Tory way is back and gaining ground. Weird how that could ever feel like some form of respite and even thinking that feels somehow perverse. It’s really about as much respite as me being relieved to not be in excruciating pain and settling for the dull, constant ache and weakness of muscles and bones and continuous energy depletion. We might need to remember that, before we forget what is possible and end up settling for Tories just being Tory all over again.

On that fun note I’m off to console/reward myself with an actual mini-roll, the eponymous chocolate variety. Strangely these have become somewhat of a craving in the last month. Can’t think why…

See you next week.


3rd November: Writing through the good and the bad

I’m making an early start as movement and energy are very restricted so writing this over the day. The pain flare that kicked in on Tuesday was with me all day yesterday as well as fairly increased light and sound sensitivity. The day was spend in a dark room under the duvet or wearing dark glasses; writing was impossible as I couldn’t tolerate the screen or think past the pain.

Today, the pain has subsided to something more dull and tolerable but I still feel extremely weak. It’s a couple of hours later now and I have made it downstairs and had some lunch which are likely to be my activities for the day (and writing this). Usable time, as I call it, that is the time I have when I am not either lying, sitting still or sleeping which has dropped from 3 hours to about 45 mins a day. It will come back again, for me at least, but so many other with M.E. what I have described over the last few days is their daily, unceasing reality – people with Severe and Very Severe M.E.

It’s another hour later. I am trying to write through the good and the bad to document what is like to live with M.E. for my own sense of purpose and meaning. I also hope it helps give a voice or perspective to those that can’t either because their symptoms prevent them or because they believe no-one wants to read or hear about their daily experience. It can be much easier to look away, even if it someone is on our doorstep. Life is tough on so many levels for everyone right now, not just in the UK but everywhere, and it’s hard to get anyone’s attention as there are so many different causes in need. So if I did get your attention for a minute, thank you, and if you can, have a look here, at this short video of people living with Severe and very Severe M.E.

Even these temporary crashes for me are terrifying and I cannot begin to imagine what it would feel like if all I could see stretching ahead me was lying still in a dark room for most if not all of the day. So, if you are someone living with a severe form of M.E., I thank you too. I know your time and energy is more precious than the rarest of diamonds. As are you. As you are, and as you can be. There will be a time when the medical profession catches up with what we already know and we can all reclaim our lives again.

One day.


1st November: Mayhem, destruction and M.E.

Using a visual aid today as the various barrage of symptoms have converged into one. It might be that the others are still there but the volume of this particular symptom is so high that it’s all I can hear: unbearable and unyielding head-splitting pain.

Me sitting upright on sofa looking at the camera with pained expression.  Wheat pack behind my head to provide relief

It feels like someone has clasped their giant hands around my skull and is slowly tightening their grip whilst at the same everything inside is pushing out trying to escape. As you can see from the picture I am trying to find some relief in a heated wheat pack applied to the back of my head, what you don’t see is me alternating it around the front across my sinuses. It’s take your breath away pain but other than a subjective interpretation of what you can see in my eyes, would you know?

It may help if I could tell you exactly why it is happening but my best guess is the little viral monsters continuing their rampage of mayhem and destruction, or rampant antibodies gone mad looking for viral monsters and inadvertently causing mayhem and destruction, or both. 

The end result though is the same. What would be, if you could see it, scorched earth – damaged cells, connective tissue, muscles, joints, inflammatory processes gone wild, that bring about among other things, chronic, excruciating pain. After such a regular and relentless onslaught there is not much left that has not been touched by this disease from which to build back up again.

It does, for me, build back, eventually, and I have gone through this enough times to know this pain passes and the volume dies down and I can put the wheat pack away. Until, what I have also been through enough times to know, the next time.


31st October: Peri, meta writing and salad vegetables

The start of another week, and another Monday morning where I had great hopes of being out of bed before lunchtime scuppered by the continuing onslaught of worsening M.E. symptoms. Plus period. Plus peri-menopausal period.

That’s a far as I got with today’s mini-roll before abandoning four different attempts to carry on. In previous writing I called this being “word-shy”, as if the words I write decide they don’t like being so exposed so they scurry off into the darkness again. It’s incredibly frustrating as I end up writing about not writing which all gets a bit too meta.

It’s not like there isn’t stuff to write about – Suellen, for instance, who is about to make a statement in the House of Commons. Unlikely it’s her resignation but I can hope. Can’t see it being long though, our new new PM’s logo, sorry, brand, sorry, personal and professional integrity is at stake, so it might be time to start comparing her tenure to that of a perishable salad vegetable.

Other than that, I just abandoned another paragraph that may or may not have attempted to offer salad vegetable alternatives to government ministers, so I am giving up for the day and will take another pass tomorrow.

Hopefully, a brighter day on many levels.


October 28th: NOT a dormouse in Wonderland

I had to take a trip in the car today. I normally love car journeys (in the front at least) as I get to leave the house, see so much of the natural world and feel a sense of freedom and movement. Unfortunately, during downturns or extended PEM they are less fun as I have to support my neck and stay perfectly still as well as resist to urge to throw up at any turn, stop or bump. It took me a while to figure out this was inflammation which had exacerbated an instability in my neck, a gift of worsening symptoms post-vaccine.

It does make me laugh that people think M.E. is “just fatigue” or “being tired” as if we shuffle around like the dormouse in Wonderland eyeing up teapots and tree-stumps for cosy naps. There are moments for sure when sleeping is the only option but a lot of the time it is the opposite that is occurring – being wide awake desperately wanting to sleep and not being able to lift your limbs as someone filled them with lead when you weren’t looking, for instance.

It sounds better though doesn’t it? Makes it easy to persuade people that we don’t need any help, just a good night’s sleep or, as one doctor told me, a couple of paracetamol and a nice holiday. I do ask myself regularly what is it about people with M.E. speaking out about the obviously biomedical nature of their condition that is so threatening to established figures in both medicine and social care? How have we ended up with such a political condition?

And why is so damn hard to get people to see the reality of our experience? Even at recently as this year someone asked me if I had that “Yuppie flu.” Why are we constantly both accidentally and even at times deliberately misrepresented? Is the gradual wasting away of body and mind just not sensational enough for the 24 hour news cycle?

I have no ideas nor sarcastic quips just questions today I’m afraid. So what do you think, reader of these daft little mini-rolls? Are we missing something when we tell our story, or is it the fact we are missing from every day life which means our story is just not being told? Or, as if often the way, is it a bit or a lot of both?

October 27th: M.E. Paradox

Strategic rest (where I can gently move about, read, watch TV) has moved today into what I call radical rest (staying still, limited distraction and sensory input), as yesterday I felt I was going backwards fast. One thing I wanted to do with these mini-roll blog posts was show as many sides of living with M.E. as possible and keep writing through it all when I could. I want to show the impact it has on my daily life and the changes in tone or language you might see as a result.

I really don’t know how half the stuff I say and write can tumble out of the same brain that half an hour ago struggled to count and differentiate a whole four types of supplements – all different colours and shapes. I am sure it’s something to do with where the neuroinflammation is located but it is often hard to explain to someone who doesn’t see the inner workings, or what it felt like to me when everything was working well. For anyone that can remember, my analogy is that my brain goes from the processing power of a regular modern PC to that of a 1980s ZX Spectrum. (Link here for anyone under 45.)

The paradox is for people with M.E., especially if you are trying to raise awareness, is that the person you see or read is the one that does have a bit of energy and cognitive power to articulate sentences and structure arguments. This often means you do not get to see what price they pay for that or what preparation that have gone through to get their message to you. It can be like English becomes a foreign language and the brain has to work harder to find the right words and put them in the right order, and even then something about that may seem off. But none of this is seen or is masked by words on a page or careful preparation and rest before and after what is observable. So maybe the audience sees this and thinks: well, it can’t be that bad.

And many doctors, sadly, who chose only to see a sliver of the surface. This made way for some “eminent” psychologists to jump on our condition as a mental health issue, ignore data – like the presence of PEM (Post-exertional malaise) – that didn’t suit their own bias (oh the irony) and adjust their studies to fit. More on that here if you want to explore the very real impact of that further.

So here we are still, trying to raise awareness, trying to work out what is happening with the wiring in our brains (amongst many other symptoms), trying to be heard and seen in a way that shows the stark reality of our lives. And, hopefully, finding ways to get people to see past their own bias to realise that things are not always what they seem.

That, in our case, their eyes actually do deceive.

***

New to the world of people with M.E. and want to know more? A whole bunch of useful links here

Know about M.E and want to be an ally? Learn about how we have to manage time and energy and how you can help here.


October 26th: PEM and the Continuity Contradictory Cabinet

I am not a very good political commentator (using that term very loosely) since I refuse to watch or listen to PMQs in the House of Commons each Wednesday. Today, I had even more of a good reason as delayed PEM has hit from both weekend exertion and a sustained adrenaline surge, and I feel that I have the constitution of the newly-(re)formed Cabinet – poisonous, wobbly, weak, fundamentally dysfunctional, and could collapse at any moment due to relentless in-fighting.

I also feel increasingly dizzy and sick. Some of this from PEM but mainly from our new new PM emphasising the importance of professionalism, compassion and integrity, and actions speaking louder than words, before immediately acting to restore a Minister found to have breached the Ministerial code who has the emotional sensitivity of a cactus.

Such massive cognitive dissonance that it made me wonder whether he was actually telling the truth after all, and by saying actions speak louder than words he meant he was going to tell us any old tosh and do whatever he wanted. You know, behave like a Tory.

So sadly it looks like the same old same old, for my M.E. symptoms and this new/continuity/retread/fear-to-tread/right-wing/wing-nut Government. But unlike M.E. there does happen to be something that could potentially be a cure:

Call a General Election Now.


October 25th: Good News Bad News (and Oh God No, News)

Another day of strategic rest so I am watching the news as the existing Cabinet members tumble out of those cosy front benches to relative obscurity of three benches back. Bar one, (*cough Hunt), maybe two, (*cough Shapps), I suspect.

It’s going to be a good news bad news day for left-leaning folk like me – JRM and his embossed post-it notes being booted out is the best news for me so far – as I just know the universe will demand some kind of equally supervillain/ malignant entity to cast its shadow over the government in return. Expecting that role will be gleefully filled by Suellen, back to claim the title of Head Ghoul to do or dream up something additionally vile.

(Sorry, not sorry. Couldn’t resist a Halloween-themed pun)

As for our new, new PM, I found I was able to listen to his speech without wanting to throw something at the telly (and without wanting the energy and strength to actually throw something at the telly) so that’s an improvement on a week ago. That might change if he starts spouting divisive culture war crap, advises poor people how to be better at being poor or decides the best way out of this is to cut social benefits to the already exposed bone. You, know, behave like a Tory.

Until then, I’ll keep watching; praying the universe won’t exact such as heavy a price of supervillainy, and will settle for Steve Baker’s goatee instead.


24th October: Candyfloss and Jellytots

In the most unsurprising turn of events since PEM followed exertion, our Penny dropped out leaving our Rishi as last Tory standing.

(I had a joke about impatiently waiting with nothing to do and nowhere to be which for people with M.E. is known as strategic resting, but that’s gone since now we know. Not that that changes planned lack of plans one bit.)

What an absolutely farce. The lack of contrition and humility takes my breath away, that the Tory party have dragged the already freaked out public through this “Will he? Won’t he?” game. They must think we are all dosed up on Saturday night light entertainment, with its overly dramatic hype and host’s interminable breathy pauses before they announce which poor [insert random celebrity here] is going home tonight. Only difference is, in most cases, the general public at least gets a say on who stays or goes.

Not in this though, it’s been candyfloss and jellytots for intoxicated journalists and a few deluded politicians, and another week of NON-ACTION for the rest of us on things we desperately need help for. What is happening with the Energy Price Guarantee now? Is it two years again? Six months? Off the table? Are we paying more tax? Less? Will some state schools still be able to open next year? Will we be able to afford our homes? And what of disabled people and those who cannot or are unable to do paid work? Do they even get to ask such questions..?

I guess we’ll find out on the next episode of Undemocratically Elected Tory Prime Ministers. Coming – to a stressed-out and despairing electorate – soon.


21st October: The Swear Room and the Swamp Thing

Wired and tired today. I am utterly devoid of physical energy and yet a cocktail of hormones is coursing through my body which means no part of me can rest. A horrible M.E. symptom (not that any of them are in any way nice) that often but not always afflicts me pre-PEM and brings along acute insomnia to the party.

Whilst they are in there getting hammered and smashing up the place, worsening cognitive dysfunction decided to gatecrash. If you could only see how many times I have had to consult online dictionaries for definitions and synonyms today. I do attempt to find what I want to say but that often involves going into the equivalent of a pitch-black room in my brain and just reaching for the nearest word(ish) that is at the top of a messy pile of what was once neatly filed and meticulously labelled books in cases. “Doorthing” for example, is a window. It does the trick.

Luckily, I still have a room in there which is intact and full of words that are useful to describe events leading up to and including today. My swear room. Words like arseh*le, motherf*cker and, my personal favourite, w*nkbag, are interchangeable so less effort is needed to find the exact word, as well as apposite for describing the re-emergence of the tw*tf*ckturd himself – our very own tousled-haired, lollopy lad and “Deep State” Swamp Thing: – yeah, no I am not even going to use his name.

I have a very personal reason to turn the air blue too with the invocation of our ex-ex PM. There was his inability to see desperate human vulnerability over opportunism, his refusal to lock down when we needed to, and bringing out a vaccine quickly in order to be say Britain was the “first” (which he branded Oxford ie British until it had problems then it suddenly it was Astra Zeneca again) that meant my health went from fairly shit at times to utterly trashed at all times. Then, there was the opening up of the country and letting the virus rip on Freedumb day, One and Two. This meant people like me, and countless others, had to choose between self-imposed isolation or days lost to the gnawing anxiety of being around people who no longer gave a flying f*ck, joining those at Number 10 having parties, under his watch, who already didn’t give a flying f*ck.

So, yes, swear-words seem immune to the ravages of neuro-inflammation, and also act as a necessary form of pain relief. Stephen Fry would agree. They are likely necessary over the next week if our resident blondebaby gives or gets the nod. Perhaps we will know by Monday and I can close the swear room and attempt to tidy up the other stacks in the more polite and articulate rooms in my brain.

Until then though, what breath is in my lungs will not be held.

See you then.


20th October: Dear oh General Election Now, Dear

If you are in the UK right now, unless you are an iceberg lettuce, you can be forgiven for not being able concentrate or, in my case, write. Especially, write anything sarcastic or satirical as everything possible would be immediately eclipsed by satire personified itself, otherwise known as the Tory Party.

Dear oh dear. Not only the best King Charles meme so far but now obviously the successor to Keep Calm and Carry On that we will all have on our t-shirts, mugs and commemorative tea-towels. Maybe they will combine it with coronation merch next year?

Personally I would prefer General Election Now as this unruling party is as broken and toxic as my mitochondria, and also like my mitochondria, there is no f*cking cure. Only full-on replacement will work. Only transformation at the cellular level will be anywhere near any good (not me, the Tories… well maybe also me)

So, where we go from here I really can’t predict, and I really don’t want to either. I’ll leave that to the journalists and pundits currently bouncing off the four corners of the screen like Tigger on a sugar rush.

As for me, probably like the rest of the country, I need a strong cup of (decaff) tea and to go back to bed, which for any international readers, is British for having a total meltdown.


19th October: That abominable staircase

If you have read a few of these and wondering what I get out of writing these, then settle in. For these mini-rolls at least, it’s a long one.

I have always had some interest in politics. I didn’t study it, I even didn’t vote in one election (one of a few regrets) and for vast swathes of my life politics was something that happened in the background. Then, the Tories got in in 2010 and Lib Dem made their fateful deal. Since then my interest (or more likely exasperation) has been building slowly, apart from the rocket boosts of Brexit, Tr*mp, J*hnson, and now our favourite Thatcher impersonator – who took 3rd prize for her costume at the recent Comic-Con – Truss. (1st prize went to a head of lettuce)

M.E. sadly, also had a similar, and just as terrifying, boost last year when I rocketed from mild to severe case over six months. I was mainly bed-bound and had only a tiny amount of usable time where I could be something other than horizontal and perfectly still. Thankfully, I have improved a little and have settled into the orbit of Moderate M.E. but mostly closer to Severe than Mild.

And it’s f*cking tough. People with M.E. are a resilient lot and we absolutely don’t want to be. We don’t want to have to wake up each day not knowing how bad our symptoms are going to be but knowing that whatever the outcome getting through the day is going to be a b*stard of a struggle: Our own personal Escher staircase – which in our case is also on fire and constantly getting steeper, with someone removing a few steps at random and whenever they feel like it so we lose our footing along the way. Some of us find each other on social media, we share how we feel, we write, we swear, we advocate, we make jokes, and there are some damn funny people on my socials, we research, we educate. We give each other hope, comfort each other when it gets too much, debate about politics, share gifs of animal hugs, come up with ideas (that take forever to manifest because, well, M.E.). Places like, but not only, Twitter become our office, our coffee shop, our pub, our school, our library, and for many of us, the ONLY way we can engage in life.

We keep each other going.

Because there are days, like I am having today, where I just want to stop. It just becomes too much and, staring up at that abominable staircase again and again and again and again, every day, all day…eventually that resilience unravels at lightening speed taking all vestiges of my mental health with it.

And then, somehow, from somewhere, when every thought of fighting and keeping going is lying there like a ratty, impossibly- tangled ball of wool, I find a tiny bit of something still inside.

So if you are wondering why I write these and why sarcasm and political satire, it’s this. Catharsis. A necessary coping mechanism of banter and laughs, shared with my pwME friends, so that the staircase does not defeat me today.

And hopefully sharing my life, politics and social angst will help open some ears and hearts to what is happening to millions of people worldwide with Long Covid, as well as those with existing M.E. who all too painfully knew what was likely to come.

Finally, whilst you may empathise or sympathise with this struggle, it is nothing compared to someone with Severe and Very Severe M.E. You might not get a chance to open your ears and hearts to their story as they are too bloody sick and disabled to use a phone or tablet, their body too depleted to even communicate what it is they want you to hear if they can process those thoughts at all. All they have is Living Death, no staircase, no coping mechanisms, just a wasting form that science continues to abandon.

Now, that is too much.


18th October: Millions missing – from life and from funding

Banner from ME Action. Text reads "Our common thread can change the story. 2022 #Millions Missing. Beneath is long string of red thread. Background is a library bookshelf with books missing
Credit: ME Action UK

A smaller bite of this bitesize mini-roll today as I’ve used most of my usable time on virtually attending the ME Action UK Demo at Parliament Square who are demanding that MILLIONS MISSING from funding be allocated to biomedical research for people with M.E and Long Covid.

I am in awe of those who used their precious energy to organise this, especially Denise Spreag of ME Action UK, as well as those who participated and shared their time and their heart-breaking stories. Also Decode ME and Doug Kell for their perseverance in researching causes of M.E., despite minimal support from government and other institutional funds. With such deep gratitude, thank you.

Finally, given the absolute chaos and ceaseless noise in government right now, I want to thank Lord Bethell and Fleur Anderson MP for their vocal support at the demo and in both chambers of Parliament. Looking forward to how your support plays out, as it looks like we will have to fight so much harder to be seen and heard.

Please make sure we are voiceless and invisible no longer.


17th October: Re-reversals of (mis)fortune

I decided to wait to compete in the daily bed to sofa marathon until the latest Chancellor/Ken Doll had made his interim statement on the-interim-part-year-through-almost-but-not-quite-and-definitely-no-longer-mini budget.

U-turns were re-reversed, I think. I can’t quite keep up and, whilst it is true cognitive dysfunction is often an evident feature of M.E., in this case, even the newest and shiniest of brain cells may have struggled to follow their logic, so I’m giving myself a pass. I will say trying to make sense of it is more exertion that I can spare, or would ever want to spare. So, if you came here for astute political analysis (and why wouldn’t you given my vast experience in the subject) I’m afraid you will be as disappointed as a certain ex-PM believing this entirely avoidable debacle might be his route back to power.

I wonder if he now thinks he is no longer the worst PM? Has Liz eclipsed his galactic level of self-interest and opportunism with her galactic level of self-interest and, um, opportunism? There are murmurings of a new alliterative three word slogan being tested in the ether. Bring back…you can guess the rest. (And no, not going to dignify that with a link.)

I would like to say that isn’t going to happen but really who TF knows anymore. I would hope there is enough sense and abject horror left in some of our politicians to make sure he doesn’t sidle back behind the despatch box. But, then I thought, after a global and deadly virus left a vast amount of people disabled and chronically sick with Long Covid, doctors* would finally listen to people with M.E…


*In case that was too subtle, many doctors still don’t. There are a few that do, and some that are doing incredible work to push for biomedical research and treatment. But even the good one I managed to find last year couldn’t escape the institutionalised view of M.E. still deeply held by many powerful people with many letters after their name and awards in their cabinet. There is so much more work to do from a bunch of people living with an energy-limiting condition for whom “more work” might as well be asking them to run to the moon. To actually cut through we need help. Your help.

14th October: Love letters and slow growth

Well. The inspiration for this mini-roll, the mini-budget, has just got a little bit more mini today, as our chancellor suffered the same fate as the pound immediately after his “fiscal event”. He resigned/ was asked to step aside depending of which of their letters you believe. The good news is that they are still besties. Nice that destroying the UK economy together brought them closer as friends.

There was another U-turn too also, although our PM was at pains to ensure that we should remembered that as “acting decisively”. She must have been given one of those action words lists you get from from CV coaches when you are forced to learn how to write one. Or a Ladybird book, one of the two.

M.E. wise, I am still experiencing less growth than I would like and whilst not crashing I am not improving either. Although neither up nor down is not a bad result for someone with moderate M.E., or the new Chancellor Jeremy “Steady Eddie” Hunt, I suspect.

But this has been all too much excitement for me, and Sky News it seems which is the living embodiment of the word hyperbole, so more rest time calls.

Back Monday. Stay decisively acting and economically stable. Clearly.

K x

***

New to the world of people with M.E. and want to know more? A whole bunch of useful links here

Know about M.E and want to be an ally? Learn about how we have to manage time and energy and how you can help here.


13th October: Spitting for science and smiling assassins

I was tempted today to change the name of my mini (blog) roll to “The Invisible Woman, politics and social angst” as, yet again, I was delivered two more media pieces about Long Covid with no mention of M.E. I even wondered whether Twitter’s algorithm was so sophisticated that it had found a way to twist the knife, whilst also looking both supportive and innocent. “Who me? I am just trying to inform and edify you, dear lady.” Quite the smiling digital assassin. Hmm, maybe they’ve been taking tips from our one and only Michael Gove?

But paranoid flights of fancy aside, today I am focusing on something much more productive and hopeful, and that’s the Decode M.E. study. I love this quote from their website:

People with myalgic encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) are at the heart of the study, with a patient and a carer as co-investigators alongside the scientists and a steering group of people with the illness, carers and charities.

Patient-centred, science-based and goal-focussed, it is the largest study ever of people with M.E. (referred to here by the name, ME/CFS, agreed by consensus for the NICE guidelines on the condition, more on that in future posts no doubt). In my view, it is by far the most hopeful thing to happen to people with M.E. in terms of attempting to get to the root cause to then better explore appropriate treatments: Real science and real medicine for a very real disease.

DNA test kit from Decode ME. Open cardboard box, instructions leaflet, test tube, funnel and return plastic bag
Decode ME Test kit, just waiting for my spit!

As I have just had my lunch, I have to wait as bit before I can spit for science and send off my sample. (See pic above) So until then I may just venture back onto Twitter to see if the coast is clear. But I’ll be lucky if I can get in a tweet or two before the algorithm finds me and feeds me more about the medical mystery that is Long Covid. Or just as likely, since these social media algorithms are all in cahoots, shower me with memes of a certain (allegedly) duplicitous Tory MP…


12th October: Truth will out – invisible no longer.

I was planning on writing about the amazing Decode ME study today but that will have to wait, as I started my morning by reading an article in the Guardian about Long Covid which, you guessed it, failed to mention M.E. At all.

At some point you have to wonder whether this is intentional*: Decades of convincing the world that M.E. was a psychological condition, building successful careers on that premise, winning awards, accolades and government contracts based on questionable studies, dismissing endless pain and suffering because they taught and were taught it was not real. It’s a lot to roll back on. I guess “Oops, our bad” is probably not going to cut it, so the pretence will continue.

Ultimately as the saying goes: truth will out. No matter how much those who did play (and may still be playing) a part in dismissing the biomedical evidence mounting up for both M.E. and Long Covid, or whether they ‘fess up or not, I have to comfort myself that it’s just a matter of time before that truth wills itself out.

And yet, I am not going to hide away until it all comes to light though, nor am I going to stay quiet when article after article continues to erase hundreds of thousands of voices. I will no longer be the Invisible Woman in this long-running play. For them it may be career-changing, embarrassing, they may even lose money and face. But for us, and potentially many more with Long Covid, the stakes are so much higher. Too high.

***

*Before hares start running, I am not saying that the Guardian is deliberately ignoring M.E. but there are people and possibly institutions who are. Nor am I saying any and every medical profession or journalist is at fault. Eventually though gross ignorance becomes just as dangerous as wilful arrogance, so the defence of “we didn’t know” is no longer valid.


11th October: The Invisible woman and M.E.

Having M.E., and specifically M.E., is like being the Invisible woman from the 90s UK sketch comedy, The Fast Show.

Many women will recognise this experience – suggesting solutions to a problem which are ignored, and then repeated by a man, who is then immediately celebrated by a group of, usually, men for his brilliant idea.

People with M.E. will know what I am talking about because in this analogy whilst M.E. is the Invisible woman, Long Covid is the celebrated man. That is not to say people with Long Covid are in any way culpable; they are, sadly, just as much victims of circumstance as people with M.E. In this analogy, as the Invisible woman herself, it is the group receiving the suggested solution that are at fault. They are ignorant to the voice of the Invisible woman/person with M.E.; their narrow belief that only some people deserve their attention dictated by how they choose to see themselves.

I have lost count of the reports by both medical professionals and journalists who use phrases like “puzzling“, “unusual”, “surprising” or “we don’t know” when talking about aspects of the post-viral condition known as Long Covid. Often these reports either fail to, or deliberately don’t, mention the similarities between Long Covid and M.E. When we come across these reports, people with M.E. on social media, like me, let out long sighs of exasperation. Then, there are the studies that helpfully present their “new” findings which is often very “old” news to the M.E. Community. Since the pandemic began, people with M.E. have been sounding the alarm for post-viral complications, let alone trying to be heard and seen for decades. But as our condition has been stigmatised due to psychologisation of physical symptoms and certain members of the medical community pushing exercise (GET)and CBT as the only way to “recover”, our voices have been diminished. Instead of a giving us a megaphone, the world pressed mute.

Sorry, this entry hasn’t been remotely funny but I think now and again these mini-blogs might need a serious tone. Because the excruciatingly painful reality for many is, ignorance and arrogance within the medical community has led to this global mass disabling event. The #Millionsmissing, already invisible enough, are only now just being noticed and even then not by the majority, as arrogance still pervades the medical establishment across the globe. And I remain convinced that this arrogance, along with those that amplify it, is the real leading cause of Long Covid.

So please, don’t let us be invisible, and don’t be part of that group who selectively see who and what they want to see. The message is both loud and clear: M.E. is, and has always been, a devastating, disabling, and very real biomedical condition.

***

New to the world of people with M.E. and want to know more? A whole bunch of useful links here

Know about M.E and want to be an ally? Learn about how we have to manage time and energy and how you can help here.


10th October: Brain blocks and appalling analogies

Now here’s a test. Can I be moderately funny, or at least land some poignant sarcasm, when overnight my brain was quietly emptied of most available words and my limbs were secretly encased in lead? Probably not, but on I go…

I call this particular rendition of M.E. “Tin Man”. Everything feels stiffer and more immobile than a Rees-Mogg media appearance, and things which should flow – blood, bioelectrical current, information, memory – are suddenly blocked. Come to think of it, JRM could probably relate to last minute blocks.

In related news, or as related as my brain will allow, I keep calling inflation, inflammation. Another misfiring in my brain as it scrabbles in the dark to find the right word but reluctantly settles for the first thing it can grab onto. I don’t think in this case it’s that far away from accurate, and I’m sure there may be many more analogies between living with M.E. and our current economy, and/or our absolute state of politics. It certainly feels just as parasitical, poisoned, with something enduringly venal that has infested the body, and people waking up finding they are stuck fast where they are, desperate to conserve energy.

So, that will have to do for today in terms of attempted wit and levity, as my brain, unlike the stupidly rich and several opportunistic energy companies, has realised it’s been taxed enough.

Back to resting now.


7th October: How social is this media exactly?

Today I have been learning about social media engagement or lack thereof. I discovered, through someone similarly exasperated, that certain social media platforms limit engagement if you add links to your post from an external source. In my case that means this blog. As if the fight to be seen and heard for people with M.E. wasn’t hard enough it appears I now have to expend additional energy of diminishing quantity on finding workarounds to get people to see that I am out here, bleating away.

Starting to wonder whether there is anything social left of this medium. Maybe Thatcher was right and if she was around today (as opposed to her cos-play version) she might remind me *lowers voice to a breathy baratone* “there is no such thing as social media, just individual tweets and there are threads…so it’s our duty to look after our own tweets first.” (Just given away which platform I am talking about there.)

I will keep going though. Most likely through bloody mindedness until I hit a PEM roadblock again, or something our “radical” “disruptive” government does renders me completely speechless. Odds on either one of those are pretty even. Possibly the latter more likely.

I am going to down my metaphorical pen for the weekend now, though. As enjoyable as these little nibbles of mini-roll are for me to write, finding the time and energy to write them every day is as likely as Penny and Liz doing “I Got You Babe” at the next Cabinet karaoke.

See you next week
K x

Before I go, if you are enjoying these mini-blog posts pleases like and comment below or on my socials: @KirstieSivaP on Twitter or my Facebook page. Would be nice to know I’m not just talking to myself. Share too if you think others might like it. Also happy to answer any questions about living with M.E. and what you can do to help. Equally if you are someone with M.E. or suspect you have M.E. or Long Covid, I am here to listen.


6th October: Weightlifting and (Anti) Growth, Growth, Growth.

Still a slight sore throat this morning and muscles are silly little weak things. There was a report briefed out to all the media last week on weightlifting being good for older people in terms of preventing early death. It made me laugh. Doing something like that feels worlds away for me, galaxies even, unless it includes weightlifting half-full cups of tea.

Don’t get me wrong, exercise is great. Am sure your socials are chock full with the many and various benefits. However, exercise for people with M.E. is the opposite of great. It is, in fact, the very worst thing we can do to our bodies when trying to recover. More on that here. And here too, if you have time. (Caution: these stories may shock you. GET stands for Graded Exercise Therapy.)

In between weightlifting cups of tea I have been able to finally water my poor plants. Have been contemplating pruning them in the style of Kwasi and Liz: I’ll start by removing all the leaves then I will rip out the roots, before crossing my fingers and hoping for growth, growth, growth. Will let you know how I get on.

But, not really, as I am off to see how to join the Anti-Growth Coalition. I hear they are recruiting pretty much anyone and everyone including a fair few of the Tory party, the IMF, Jamie Oliver and the RSPB. People with chronic illnesses will be a shoe-in.

Marxists, the lot of them.


5th October 2022: M.E. Medals and M People

Slight sore throat today and not much energy, so bed rest for me, for the morning at least. Have now showered, dressed, eaten and made it downstairs. Not so much Couch to 5k, but Bed to Sofa k, and for people with M.E., that takes just as much energy, but with the marked difference of no-one wanting a picture of your triumph or to award you a shiny medal after.

I managed to catch a little of “The Speech”, as much as I could muster, because the voice of our current, hopefully transient, PM is as warm and compassionate as a Southern railways train announcement. Anyway I much prefer this version. Likely to be more truthful too.

As someone who occasionally writes (other than this acerbic mini-blog) I am fond of words. When I write poetry I spend hours over getting one word right, reviewing synonyms and also indulging in my geeky passion of etymology. I also am fascinated by rhetoric. (That’s me and Rory Stewart apparently) So hearing words and phrases like “anti-growth coalition”, “enemies”, “normal” “peddle” followed closely by “meddle” it makes my hairs stand up. No joke inserted here as this kind of language terrifies me. Like I said in my first post, watch out for this. Weaponised words. Straight out of the populist playbook, only ever aimed to divide and appeal to those willing to vote and support the person wielding it.

Not sure what the playbook says about songs though. Truss chose a current of-the-moment track, “Moving On Up” by M People as her walk-on music. I reckon she still has a pristine copy of Now That’s What I Call Music Volume 27 from her Uni days, as a quick Google search shows it’s a whole one song away from D:Ream. Must have decided the East17’s “It’s Alright” wouldn’t wash with the heartland membership.

I am really hoping Labour counter with something from this century at least. New England by Kid Kapichi would get my vote. It has nice healthy mix of anger and sarcasm. Great work-out music to train for my next “olympic” event of putting the washing on.


Whilst you are here… (this is why I do this after all)

New to the world of people with M.E. and want to know more? A whole bunch of useful links here

Know about M.E and want to be an ally? Learn about how we have to manage time and energy and how you can help here.


4th October 2022: Time, Treatments and empathetic Tories

Still no obvious signs of PEM, so as long as I keep to a whisper I can say that I may be back to baseline. That is, back to twelve hours of rest in a day, excluding time asleep, to enjoy four hours of usable time. That’s 25% of the day to get stuff done. My tiny little window of opportunity.

Today is also the day of my regular craniosacral therapy* session. This was and still is one of the only effective treatment options I have found that help me manage my energy and aid recovery. I say help and aid because it is not a cure nor a quick fix. That doesn’t exist for people with M.E., and if you want to know why a cure doesn’t exist after decades of us calling for it then I recommend checking out this rather passionate post here.

Craniosacral therapy is strange though. I am not sure as to why it works but it does (again, for me, not saying for everyone). It’s like energetic chiropracty- the feeling of being stretched and reordered, which for my hypermobile bones is a welcome relief. I don’t know if this resonates with other hypermobile/M.E. people or not but a pain flare can feel like everything is being crushed together, like my body has too much skin in proportion to my bones. I used to hang from door-frames when I was younger or pull at my joints desperate to do something to stop the pain.

Speaking of stopping the pain, I read with equal parts amusement and suspicion that some Tory MPs, that is some previously culture-war baiting Tory MPs, are having some kind of empathy makeover in an attempt to distance themselves from the current government stance. Nothing more unnerving than seeing Steve Baker defend taking the knee, or Nadine Dorries re-emerge to call for a general election . A one-eighty turn or something else a-brewing?

Who knows. All just hullabaloo really.

***

*PS I want to emphasise that craniosacral therapy is a personal choice of treatment and helps me. It is a complementary therapy and not a substitute for medical care. I do not endorse it for everyone and/or specifically for M.E.


3rd October 2022: U-turns, dogs and dodgy dreams

Another rest day for me. This one is pre-emptive as managed to carry out a long-standing plan at the weekend with friends. Stayed within my four hours of usable time a day current limit so feeling hopeful PEM is kept at bay. So no last minute U-turns for me. This particular lady is not for turning, as she is never able to promise a particular direction in the first place.

Our friends have a dog – a cross collie-springer rescue dog that is extremely loving and sprightly. It triggered the semi-regular conversation my husband and I have about getting a dog. Then I remember the poor, parched calathea and tradescantia downstairs whose livelihoods depend on whether I can prioritise their survival (often the answer to that is no) and we abandon our plans yet again. No clever analogy to what our government is up to needed here but just in case I am being too subtle here is a link to the news I woke up to today.

Ah well. Nice while it lasted, well nice if you were part of the darkside that shorted the pound. For the rest of you, you can just go back to freezing until you find that higher paid dream job with disappearing workers rights where employers can pay you a little as they can get away with.

Sounds like just the kind of dream I have about a future living with M.E. in this version of Tory England – an Upside Down living nightmare.


1st October 2022: Energy prices, pacing and protests

Jaysus. I knew it was coming but nothing like the bracing shock of seeing our new energy tariffs in the flesh. Cancelled our direct debit with energy company as can’t seem to trust them to not decide for themselves what we should pay. Not sure why it’s ok for companies to whack up your direct debit without authorisation. We will pay on demand now thank you. Anyway, I’m sure nearly every customer is monitoring their energy consumption more closely than JRM monitoring civil servants deskspace in Whitehall.

In other energy news, M.E. energy that is, things seem to be heading back to my usual pacing routine as now approaching what has become my new baseline*. Usable time is around 4 hours a day when I can be anything close to active depending on the type of active that time becomes. There is an analogy there between fluctuating and unpredictable increases in unit price of energy and exertion needed for activities but my brain has put No entry sign so no point trying to work out that one. Am sure for some the calculations would be easy but, for me, and as now appears the UK Treasury, accuracy in maths is as likely as Liz Truss turning down a photo shoot.

Finally, solidarity to striking workers today and those protesting as part of the Enough is Enough campaign– protests in 50 towns and cities across the UK demanding our free (market) wheeling government do more to support people through the cost of living crisis. Will be there in spirit and doing what I can to amplify voices online.

K x

*For the uninitiated baseline is a term used by people with M.E. (pwME) to describe their usual state of health when at its most stable (if stability exists at all for them.) For me, it’s mostly housebound with the ability to do basic activities with occasional social event.


30th September 2022: PEM penalties and Hobson’s choice

Sister’s birthday. Happy birthday sis. PEM finally seems to be subsiding after miscalculating time and energy needed to engage with my just over one year old nephew last Sunday. PEM penalty issued was almost total energy depletion for four days, increased pain levels and stiffness in bones and muscles, profound muscle weakness and spasms, cognitive dysfunction, and recently added due to covid, breathlessness. Unfortunately, unlike VAR, penalties given were admittedly fair since I had “overdone” it.

But today is not back to what has become my usual pacing as I have to convert it a strategic rest day – tomorrow I am planning on having a plan to plan to do stuff again. So that’s a whole week of planned activity (based on my average of 4 hours a day) as shelved as the Health Inequalities White paper and as bitterly missed as the halcyon days of New Labour. (Don’t at me)

Outside of M.E. life I’m starting to fret about managing our money over the next two years before we have to remortgage – do we focus on trying to increase our savings? (what if there is a run on banks?) or do we overpay our mortgage whilst we can? (what if we end up in negative equity?) I feel like a Tory party member weighing up the Hobson’s choice between Truss and Sunak in the leadership consequence, sorry, contradiction, sorry, contest.

I am grateful to be able to have these decisions to make though thanks to our middleclassness. I understand our privilege and whilst it is a genuine worry for us it’s nothing compared to decisions people are having to make between heating their house and eating food. Great that we have a government that responds to that by focusing on cutting benefits to pay for giving the richest in the country a tax cut they didn’t ask for and many don’t even want.

On that note, I posted today on Twitter for people to watch out for a ramping up of the narrative of benefit scroungers and gotcha moments aimed at people on lower incomes and who have disabilities. It was a clear right-wing media strategy when austerity kicked in and immediately strapped on its jackboots to kick the crap out of the poor, and as they need no additional imagination, I’m pretty sure it will be again.

Watch out for words like “cheat”, “work-shy”, oh “anxious” probably will be weaponised and may be will see “yuppie flu” again in a 21st century form, maybe “covid-snowflakes”, “health hysterics” or even back to basics with “hypochondriacs”. In fact I’ll put money on a “Is hypochondria on the rise?” long read in the Sunday Times coming soon.

OK so longer than a Twitter thread. Maybe more like the mini-budget after all.

K x


New to the world of people with M.E. and want to know more? A whole bunch of useful links here

Know about M.E and want to be an ally? Learn about how we have to manage time and energy and how you can help here.

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