A Question of Kindness…

An author I admire, Vironika Tugaleva, asked a question of her followers a while ago – the seemingly simple ‘What is the difference between being nice & being kind?’ I fired off a quick tweet in reply & promptly forgot about it – the transience of twitter!

My response, which was very off the cuff, was this – ‘I think being nice comes from conscious thought, whereas being kind is unconscious & authentic.’

You may understand the moment of sheer (if irrational) panic when she tweeted me back today, saying ‘That’s an interesting distinction. Do you think we need both?’

For a few seconds my brain just fizzled! “Why did I say that, I’ve never really thought about it, what did I actually mean, arghhh!” It was roughly the adult equivalent of sticking your hand up in class at school then realising you’d forgotten the question 🙃

(This only lasted for an instant & I’m actually amused by my thinking. In some dim recess of my mind I’m still, like most of us, waiting for someone to stand up & shout “fraud!” whenever I put my thinking out for scrutiny. Do we ever lose that completely?).

Once I’d taken a breath & re-read my initial response, of course it made sense to me. I’d like to think at the grand but young age of 48 I’m consciously responsible for at least some of my thought process! So my response was thus:

“I’d say yes – for me I think being nice would be saying yes to giving someone a lift even while internally saying “damn that’s going out of my way”, while when being kind I would offer without any thought of inconvenience. Does that make sense?”

(Just realising that even then I’d ended on a plea for understanding, note to self, post with more confidence!)

For me I think both are equally important, especially in today’s hurly burly rush-rush world. I think when we’re on auto-pilot through the day it’s easy to forget to be kind. When you’re perhaps juggling the school run, breakfasts, & getting to work, & you’re already running behind the neighbour asking if you could drop her kids off too is an immediate irritant. It’s too easy to feel like saying ‘fgs can’t you see I’m busy’, & I think a societal expectation of nice or pleasant behavior kicks in & makes you say ‘yes of course, more the merrier’ instead of throwing your smoothie* at her children.

*please don’t try this at home!

On the other hand, when we’re able to slow down & breathe, when we’re living more mindfully, our internal priorities tend to be more aligned with our conscious behavior. And that’s when our innate kindness is to the fore, when we selflessly offer to help others without first weighing up costs to our time, our schedule or our own expectations of the day.

Because being kind is heartfelt & authentic behaviour, it makes us feel good too, because we’re sending a little seed of love & kindness out into the world where it can perhaps take root and grow. And that’s better for everyone.

Wishing you all a joyful week

Namaste 🙏💙

Vironika’s latest book, The Art of Talking to Yourself, is a beautiful read, it’s currently sitting beside my bed & although I’ve not yet finished it I’d highly recommend you treat yourself to a copy – it’s food for the soul.

Advertisements

My Autumn Soup…

I’ve been asked a number of times to share #spoonie friendly recipes. I’m pretty sure this is my first. But what a great one to start with!

For me there is nothing that says Autumn more than a gently spiced root vegetable soup. It’s comfort food, a cuddle in a bowl. It’s healthy & warming. And so incredibly easy to make! I’ll give rough guides to quantity, but I rarely weigh or measure anything, most of my cooking is about being creative, and using what I have in the fridge/pantry.

It’s also about ability on any given day, & using short cuts where possible. For example I can’t chop hard veg anymore, my hands won’t allow, so my basic food processor is an essential kitchen tool. I sometimes buy pre chopped veg & other prepped foods – it’s often the difference between me having a meal of some sort or eating toast!

(I will try to remember to do a follow up post about some fab kitchen shortcuts if you’re disabled &/or low on energy).

So…. My Autumn Soup

  • 4 parsnips
  • 5 carrots
  • 1 onion
  • 4 pieces frozen spinach
  • 1 tsp garlic
  • 1 tbsp olive oil
  • 1 tsp ground cumin
  • 1 tsp turmeric
  • 1 good pinch of cinnamon
  • 1 good pinch of black pepper
  • 1.5 pints hot chicken stock (veg is fine too)
  • 1/3 cup of split red lentils
  • 1/4 to 1/2 pint of skimmed milk
  1. Use the food processor to chop or slice veg, (except spinach) it doesn’t matter which, we’ll be blending at the end
  2. Warm the oil in a large saucepan, stir & gently fry off veg & onions for a few minutes. Add in the spices, stir through well then add in the hot stock, and the frozen spinach (it defrosts in the pan).
  3. Bring to a simmering boil, throw in the lentils, stir then cover & reduce heat. Simmer gently for approx 25 minutes. Stir in the milk then remove from heat.
  4. Allow to cool, then use food processor to blitz to a thick soup. That’s it. All done! Easy right?

Today this has made me five portions, at approx 147 kcals each. It freezes beautifully, meaning on low energy days I can have homemade soup in a few minutes using the microwave, and that’s a definite win.

Changing it up

Any combo of root veg &/or squash works brilliantly, I don’t think I’ve ever had one fail me and I’ve been cooking variations of this soup for years.

I love lentils, & they’re a great source of protein, fibre & potassium. If you don’t like them I promise you won’t know they’re there, but for me they add a lovely thickness to the soup. If you really don’t like them you could add a couple of potatoes instead, they thicken well too.

Spices are fun to play with, I love the North African flavour of cumin, turmeric & cinnamon. It just adds a little kick without being ‘hot’. But you could easily swap for ground ginger, smoked paprika or chilli, don’t be afraid to experiment a little.

I like to keep this pretty healthy hence the skimmed milk, you could use full fat or even cream & croutons if you’re feeling decadent!

This easily changes to vegan by changing the stock to veg & leaving out the milk. I’ve heard coconut milk is a nice addition but I’ve not tried it yet.

Comments welcome as always, let me know if you try making this 😊

Butler Wanted…

Wouldn’t this just be fabulous? Simply the fetching & carrying would be a total blessing! I’ve gone with

  • Coffee because, well, coffee
  • Great food because my appetite is horrendous & cooking takes too many spoons (pun intended 😊)
  • Secretarial skills – oh to just dictate blog ideas at random hours, this would be a real treat, I might even get that novel done!
  • Who doesn’t want a psychic provider of heating pads & ice packs?!
  • Massage because, well, massage
  • Invisibility, on demand obviously, so I keep my sense of space

So what do you think I’ve missed? I’m sure there is loads more a spoonie butler could do, let me know what your top skills in a butler would be?

Namaste 🙏💙

Somewhere to Retreat…

Hi there, apologies it’s been so long, between one thing & another I’ve struggled to find find the motivation to blog recently, mostly energy & concentration levels low due to ME, plus RA hitting my hips – you know the drill. But…. I wanted to post something about my most favourite place to be (apart from my sofa), & a tweet certainly wasn’t going to cover it. I suddenly realised I had something I wanted to say, so back to my blog at last!

Where to start? The short version is that my lovely friend Ian (pictured below), the owner of my local bar – The Retreat– celebrated 30 years in business this weekend, which is frankly amazing in today’s economy, & mostly down to the fact that they’ve consistently provided us with excellent food & drink, amazing staff & service & so much fun. Exactly what you want from your local, which coincidentally is 250 years old this year! 😊

I turned eighteen in 1988 which was the year The Retreat opened, and yes, I’ve been using it fairly regularly ever since! I’m still slightly stunned thirty years have actually gone by & I’m not completely sure where they went! I’m still only 27, right? 😁

Anyways… Why I am writing this here? Because particularly since I became chronically ill this place has been a literal as well as metaphorical lifeline for me, and it’s a massively important part of my support network, I’d go stir crazy without it.

It’s somewhere I try & visit two or three times a week depending on how I’m feeling. It’s somewhere that as a lone female & a disabled person I feel completely safe. Better than that, I feel loved. I get table service & have my own personal cappuccino mug 😍

Most of my friend network is based from here, The Retreat has always attracted a wonderfully eclectic crowd of people as regulars & long may this continue. Ian also employs some truly fabulous staff & I love them all dearly, they’re family.

Whether I drop in early lunchtime or later afternoon there is never not someone I can chat to. Sometimes after two or three days in bed you just need human contact, and this place is it for me, it always lifts me.

Because of meds it’s very rare I have alcohol these days, I haven’t drunk “properly” for over three years, but I’m still made totally welcome for my coffees or soft drinks. My wonderful GP is well aware I use the place & often checks in with me on appointments that I’m still getting out at least a couple of times a week – we both know how important that is for my mental health, it’s way too easy to become isolated when disabled.

Any good pub or bar is always a community hub, & The Retreat certainly fills that role beautifully, whether you need help with the crossword or to find a plumber this is definitely the place to be.

So, I absolutely wanted to be present as much as possible this weekend, and I managed both Saturday & Sunday afternoons. Evenings are unfortunately a bit beyond me. But I’ve spent time with some of my favourite people in my favourite place, & that’s what was important to me.

Have I come home and crashed? Horribly. Everything hurts, I’ve barely moved since I got home this afternoon & I’ll probably trade at least a few days for these two afternoons in a row. And you know what? It’s worth every bloody spoon I’ve used, pain included.

Because sometimes life has to be about more than illness & pacing & doctors & tests & meds. Friendships & love are so important, I treasure them & the joy they bring me.

I’ve said before this is my equivalent of the TV bar Cheers, “where everybody knows your name”. So I guess what I really want to say is not only Congratulations Ian, or “I bloody love this bar”, but mostly Thank you, for being my respite, my social life, my Retreat.

Always trust your gut…

I’ve tweeted & shared quite a bit about my recent hospital cock up experience, but as it’s ongoing & probably relevant to a number of us living #chroniclife I decided to try and lay the whole saga out in one. Here goes!

Brief history – I started having back pain about two months after my RA diagnosis, having never had an issue before – so to those who think RA doesn’t affect the spine I say nonsense – I’ve heard too much anecdotal evidence that says otherwise. Plus my original orthopaedic consultant said “of course it can”.

Investigations showed one herniated disc, another dessicated. I was told this was the probable (!) cause of the mechanical pain but nothing much can be done. Despite the fact that this back pain is the main reason I can’t walk without crutches, or on some days at all. To be fair we have tried Facet Joint injections and a Caudal Epidural without success – I’m annoyingly resistant to steroid treatment.

Anyways about two years ago the sciatica started. It has never let up. Obviously it waxes & wanes but that literal pain in the butt, along with pins & needles and numbness in the foot is a constant companion in everything I do, particularly standing or sitting. It started getting bad enough last year that my GP referred me into the musculoskeletal assessment team, who referred me to my current consultant.

After meeting in March we decided to go ahead with an L5/S1 Nerve Block – essentially injecting local anaesthetic plus corticosteroids into the sciatic nerve root in my spine. We discussed at the time my slightly higher risk of complications including paralysis because of my anticoagulant therapy. I liked him a lot because he was frank and open and simply told it how it was – a rare trait in consultants in my experience.

Prior to receiving the actual appointment I had a telephone pre-assessment call from the hospital. I quite clearly remember her saying during that call that “you’ll need to stop your Rivaroxiban for two days prior, the consultant has noted five days but that’s not necessary”. So, as told, I stopped my med two days prior.

The process is that everyone on that day’s list arrives at 7.30am and waits. This is an added nuisance as you cannot drive yourself, necessitating calling in favours from friends. But I arrive on time, and wait with everyone else (while becoming slightly paranoid about people sniffing & coughing their germs around).

I get called through by a nurse into a cubicle for pre-op checks, blood pressure, sats etc. She’s very busy and has to leave for a while, and while waiting I can clearly hear other patients being asked about any previous history of DVT’s. I get sent back to the waiting room, then brought back to another cubicle to see my surgeon, let him scribble on my back and sign consent.

At this point I change into the ever glamorous hospital gown and wait. Niggling in the back of my mind is that no one has checked on my anticoagulant meds or asked me about DVT history, it just doesn’t feel right. So when the anaesthetist comes to take me down to surgery I ask if she could please check that all was OK with me stopping my med two days before?

I am so glad I did – always trust your gut!!

The answer was a big fat no. It should have been five days not two. This would have been picked up if the lovely but very busy nurse hadn’t missed the DVT question off the checklist. The booking office should never have contradicted the consultants instructions. Comedy of errors indeed.

Within minutes I had nurses apologies, booking office apologies, anaesthetist apologies. I think they were all worried I was going to be angry or upset or both. What I actually did was stick in my headphones & listen to a short meditation from the fabulous Calm app – my initial anger response drifted away and I found my peace. So much better for me, as well as others. Anger is simply not helpful.

My consultant came back to explain exactly why he couldn’t go ahead – two days would be fine for, say, a knee operation – if I bled it would be from the wound. But had I bled from the point of the injection into my spinal column there would be nowhere for the blood to go, a pressure bubble of blood would press on the nerves and I could have been paralysed from the waist down by the next morning. Obviously not ideal! He was not a happy bunny, and he thanked me for having raised the question.

So, he arranged a new appt with me there and then for two weeks later, and duly cancelled, I went home.

On the following Friday he rang to ask if I’d heard anything from the booking team, I said no. He advised me again five days off my med, and explained that although this was a nuisance for me personally it had highlighted some issues with pre-assessment checks for patients on anticoagulant therapy so it had been a good exercise for the hospital as new procedures were being clarified across departments. I almost felt important 😉

This morning (Monday) he called again, wanting to check on my DVT history to decide if interim therapy such as fragmin would be needed, and told me that the anaesthetist would call me later to advise. I kinda guessed by 5pm I wasn’t going to hear from them – annoying.

However at half six this evening he rang me, apologising that no one had called me back, explaining he was calling himself as he hated it when that happened. He’d been in discussions with the haematology dept and they had decided no interim therapy was needed, so keep not taking the meds & he’d see me on Friday morning.

If I didn’t already like & trust this doc I would now. He’s obviously got his patients best interest at the core of what he does and that speaks volumes to me about him as a surgeon. I have absolutely no hesitation about placing myself in his surgical hands on Friday, despite the earlier errors by others, because he has been honest and professional with me throughout.

And you know what? The cancellation was a pain, but if it means both myself and future patients will be safer then it was absolutely worth it! Sometimes stuff happens for a reason 🙏

Update – 8th June

I’m sitting post surgery on the ward, all done. F*ck me that hurt, don’t let anyone tell you otherwise! But – they’re confident it went well, so I’m waiting to be assessed for discharge in about half an hour depending on the feeling being back fully in my leg, which currently feels kind of heavy & a little unresponsive – I’ve been assured this is perfectly normal!

Now it’s just fingers metaphorically crossed that this actually works and stops the sciatica. Review in six weeks. 💙

The Gift of Being Present

There’s a campaign which raises awareness for ME (Myalgic Encephalomyelitis) called #millionsmissing. There will be events around the country next week on May 12th, with many sending in shoes which are laid out in public areas to represent those who are unable to attend. Others will post online, anything we can to raise the public (and sadly medical) awareness of just how devasting ME is. Details can be found at:

http://millionsmissing.meaction.net/

In essence there are millions of us across the world who feel we are missing from our lives. Many are bed bound, some for years. I often thank the stars my ME isn’t quite that severe, although there are many days I’m unable to walk around or get dressed, let alone leave the house. I’ve made a pact with myself that I will try to see other humans twice a week, even if just for coffee and a short natter, because I spend so many hours at home, alone.

I’m a natural introvert who has always enjoyed my own company, even as a child, so thankfully I don’t often feel the loneliness of many. But it is incredibly hard to maintain friendships when even a phone conversation can be exhausting, and sometimes the thought of replying to a message feels about as doable as climbing mountains. So I keep my pact with myself as best as I can, and will do for as long as I can, we all need human contact and shared laughter is a beautiful medicine of it’s own.

Over the past few years I’ve missed weddings, birthdays, lunches, and have completely lost my once active social life in the evenings. It’s difficult sometimes when you know your social group is all together having fun and you are yet again laying down quietly to conserve the precious little energy you have.

But…!! Today I wasn’t missing. Today I made it to a friends annual wedding anniversary barbecue (first time in three years I’ve been able to go) and it was so, so lovely. The sun was even out which is miraculous for a British May Bank Holiday! I managed to find myself a seat in a corner in the shade, I treated myself to a rare alcoholic drink and enjoyed a heavenly Mojito, surrounded by friends, dancing children, chatter and laughter.

I left when things were still in full swing but that’s okay, I know even on better days not to push too much and it was starting to get a little louder which I struggle with (background noise can be draining).

So I’m home now, windows open, sun shining, listening to the birds tweeting on a quiet Sunday evening. And I’m incredibly grateful for today, for these few hours of sunshine and laughter with people I love.

As always, Namaste 🙏💙

Mandala Metaphor…

We all know what Mandalas are, right? Those pretty round pictures that come in mindfulness coloring books? They have a number of interesting historical meanings, they are said to be a visual metaphor for the innate order and beauty of the universe, as well as metaphors for political, psychological and social statements. Buddhists, who patiently create them in coloured sand tend to use them as a metaphor for transformation and enlightenment.

It’s the transformation and enlightenment aspect that has grabbed me today, though not in that particular order. It’s fascinating to me that this little enlightenment has come through the form of the mandala, which has made me reflect on transformation. Sometimes the universe sends what we need 🕉️

Below is the link to a video that was shared today by the lovely Lene – please do follow her @TheSeatedView , you won’t regret it! It starts at 7m32s so you can see the exact segment we were viewing, which very beautifully shows hand exercises in the form of mandala shapes – clever and easy on the eye.

However… I watched, then went back, paused, watched again and all I could think was ‘are they really bending their hands that far?’. Yep, I can confirm they are, I’ve viewed it verrry closely. And what hit me was that they hadn’t searched the country for four models with “super-hand” abilities, this was how other people’s hands move. All the time, without them even thinking about it.

I tried. And my hands can’t do these movements, and trying hurt. I’ll be honest, I welled up for a moment. The enlightenment here is that I’ve simply failed to consciously notice over the past couple of years just how bad my hands have become. So in a way it was like a sudden… revelation. Almost a shock. Weird huh?!

I think a lot of that is down to the very gradual nature of the transformation (you knew I’d get there!). Had I gone to bed last night with my hands of three years ago, and woken up with my hands of today I’d have been screaming for doctors to fix me. Over three years I’ve slowly made adaptions, changed the way I do some things, stopped doing others, used tools to support etc.

A mish mash of coping methods that has added up to my odd ignorance of just how bad they’ve become. It’s mostly that the RA damage to my tendons and enthesitis have massively restricted my movement, leading over time to loss of hand agility and strength. So I wanted to review exactly what coping methods I use… And to share the extent of how much RA has changed a myriad of small daily tasks to raise awareness. They might even help you, bonus 🙂

  • Changing the bed – my cleaner does it, I can’t even put a quilt cover on or stretch on a fitted sheet
  • I have no grip strength – earlier I needed to open a flat plastic tray of bacon, I made the mistake of trying to grip the corner & pull the plastic film up – rookie error, that finger thumb grip kills me. Its like opening a yoghurt pot or a carton of milk, teeth or knives are needed
  • Kettle – I no longer can use one. I have a Breville One Cup, and when I fill it with water I have to use a plastic jug half filled and use both hands to hold it to pour
  • Tin opener – can only use electric one, the other was binned long ago
  • Jars etc – I have an amazing rubber square from my OT which will grip much better than I can, but occasionally I can’t even open with that & I give in or grab a neighbour
  • Cooking – am slowly giving it up, I last peeled & chopped veg a few weeks ago, then sat down & ordered some pre prepped food & some ready meals. Of course I also can’t move hot saucepans, another reason to keep it simple & safe
  • Cleaning – getting a small stubborn stain out of the carpet recently lost me the use of my wrist & elbow completely for three days – from now on my lovely cleaner’s job if needed
  • Sewing – not that I do loads, but machine only, small movements for hand sewing & even pinning hems really hurts
  • Reading – my biggest love but damn, holding a book is hard. Moving more & more over to my kindle app on my tablet
  • Dressing, washing, doing my hair… the only way I can can dry my hair is to drop my head down and use my knee to support my arm holding the hair dryer. It’s complicated 🙄😅
  • Writing by hand for longer than about three seconds… 🤣

I’m sure there are other people things that will occur the minute I publish this, but frankly I’d bore myself, you get the picture. Yeah, so my hands, pretty crap and mostly painful. So I definitely won’t be doing the Mandala hand workout anytime soon.

But that doesn’t mean I can’t appreciate the very clever beauty of it. Namaste 🙏💜

https://www.pscp.tv/w/bZo90nR3LTcxMzA5MjM2NHwxTW54bmVhZXp2akpPRqjkRT1-GsBc73pklr4lZ3TaiR4bYZj_G6gv3S73Mew=?t=7m32s

Dear Newly Diagnosed…

You obviously feel in need of support.
I do remember that feeling – that you are really struggling with the whole idea of having RA – of becoming chronically ill.

So you’ve joined a support group, seen a few posts about surgeries and disability and people trying their third biologic, now you’ve gone from slightly concerned to terrified!

It’s important I think that newbies to #chroniclife are made aware that it tends to be those with more severe symptoms who gravitate towards support groups or twitter, and stick around. It’s important we acknowledge that around 40-60% of those diagnosed with RA and treated early will likely achieve controlled remission with medication. That’s actually pretty good odds. And those people often never feel the need to look for support groups online or to stay around if they do.

So our tribe tends to be those who’ve been a bit battered, often suffering with mental as well as physical issues that ergo cause emotional as well as physical pain. It means sometimes posts and tweets can seem dark or bleak, but it also means we have a fabulous empathy with each other and are able to give outpourings of love and support and prayers whenever they are needed – we’ve been there, and many of us have come out stronger for it.

And that’s a really important thing to know – we do come out the other side. My first year with RA was dreadful, I lost my job, I was made homeless. My depression spiralled. It was a dark time, perhaps not dissimilar to where you may find yourself now, and without my online tribe (not forgetting my wonderful IRL family & friends!) I’d have collapsed. These fabulous, generous strangers kept me putting one foot in front of the other when I couldn’t see the way forward. They held up a light.

It was hard and it was sad and it was painful, I won’t pretend otherwise. Antidepressants helped, my GP helped, psychotherapy helped, group therapy helped, and very gradually my feet found new, firmer ground. On balance now I can honestly say chronic illness has brought more good into my life than bad.

The worst happened and the sun still rose and set. That’s life changing right there. Survival. Some great therapy led me to mindfulness which lead me to meditation and gratitude. Despite being ridiculously ill and in constant pain I am genuinely happier with myself than I’ve ever been in my life.

RA was the brute force needed to make me stop & smell the coffee. I know it touched me for a reason. I live more spiritually and much more slowly, I treasure my friendships, I’m more sympathetic, more patient & more kind. I’m grateful for the smallest things, a warm bed, hot coffee, a good book. I’m no longer impressed by the material, but hearing a bird sing or watching the clouds move can and frequently does fill me with with joy. My path has been irreconcilably altered by RA and I’m the better for it.

Yes I still have dark days. I’m very ill, with RA, ME, Fibro & other conditions. So I have constant pain and take a lot of meds. I’m still on antidepressants and fully expect to be for life, they boost chemicals I need to be me and I’m more than fine with that. But my darker days are just that now – days. In the past they would have been weeks or months, my coping strategies developed and yours will too.

I wanted to share this with you not because you’ll do the same or feel the same – we all walk our own path through this life. But to hopefully reassure you a little that you absolutely will find your way. Chronic illness is not an end but a shift to a new beginning, an altered life does not have to be a lesser one.

My newcomer tips?

  • Get enough rest.
  • Listen to your body, if it hurts, stop.
  • Build your pain toolkit – meds, gels, ice, heat, tens, marijuana, movies, whatever works for you.
  • Let go of worry about what others may think – it really doesn’t matter.
  • Look after you – baths, chocolate, candles, pamper yourself.
  • And always, always remember to be as kind to yourself as you would to others – we are way too hard on ourselves.
  • Practice #selfcare daily

Sending blessings, Namaste 🙏🕉️💙

Behind The Illness is Me…

Thanks to Emma, who is part of my twitter tribe and a fellow person with ME for tagging me in #behindtheillness – it’s a lovely reminder that all of us living #chroniclife are also very human! You can find her great blog at NotJustTired

So you can find below some interesting & totally not useful facts about me 😊

Four places I’ve lived:

1. Stroud, Gloucestershire (my actual & spiritual home).

2. Eastbourne, West Sussex

3. Clifford’s Mesne, Gloucestershire
4. Constantine Bay, Cornwall

Four places I’ve worked:

1. The Swan Inn – chef & barmaid extroidinnaire!
2. Stroud College – Lecturer in Floristry
3. JHP Training – teaching then management across the South West
4. Athena, Bournemouth – book retailer

Four favourite hobbies:

1. Reading
2. Knitting (very much a learner)
3. Writing – my blog, poetry & occasionally stories
4. Meditation

Four things I like to watch:

1. Criminal Minds

2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers

Four things I like to read:

1. Fantasy – swords & sorcery – Feist, Eddings, Hobbe, Douglass
2. Spiritual – Thich Naht Hanh, Ruby Wax, Russell Brand, John Kabat-Zinn
3. Thrillers – Koontz especially
4. Poetry – most recent discovery is the C14th Persian poet Hafiz – sheer beauty through words

Four places I have been:

1. Guardalavaca, Cuba
2. Marrakesh, Morocco
3. Vienna, Austria
4. Ghent, Belgium

Four things I love to eat:

1. Chocolate
2. Steak & roasted vegetables
3. Indian food
4. Lamb Tagine

Four favourite things to drink:

1. Coffee especially cappuccino!
2. Green Tea
3. Havana Club aged rum (very occasional treat)
4. Mango & Passionfruit Juice with soda and ice

Four places I want to visit:

1. Budapest
2. Iraq, Iran & Syria (ancient Persia, pictured below)
3. St Petersburg
4. Canadian Rockies

Four bloggers I’d like to tag:

1. The very lovely Wren at RheumablogWren
2. The wonderful disability advocate Shona at ShonaLouise
3. The fabulous & focused Sally at SallyJustME
4. The boldy tweeting and often amusing Elise at TheFragileBones

There are lots of other bloggers I’d love to tag, I’m just hoping I’m not duplicating the tag with my choices!

I initially thought this would be a quick five minutes, then started thinking, reminiscing….. It’s been good fun.

Namaste 💙

Please watch #Unrest

Some of you may know I have Myalgic Encephalomyelitis, or ME/CFS. Many of you will have no idea of what that actually means beyond “being tired” which is so far from the truth. For too long the medical profession & the media have treated ME/CFS as a joke, a mental illness, or fakery. It is none of the above, and the mindset is insulting to every single one of us.

It affects waking & sleeping. It affects cognitive thinking and speech, memory, writing and listening. It causes seizures and myoclonic jerks. Clumsiness. Bowel problems. Joint pain. Muscle pain. Exercise intolerance and PEM (Post Exertional Malaise) which can last for weeks or months. Flu like symptoms. It affects every minute of waking life every single day.

In the face of ignorance and incompetence from those with whom she sought help, Jen did what many of us do. She went online and found a tribe. Somewhere where we are heard, seen and understood. Where we are validated.

She then went much further, eventually creating and filming Unrest. This is her story, but it’s also our story. Thankfully I’ve never been as severe as Jen, I pray I never am.

But I have periods of days when I am invisible, when no-one sees me. I don’t get dressed or leave the house. When I wake from an 18 hour sleep then have a three hour nap. When holding a conversation is impossible. When simply sitting up is just too hard, let alone leaving the bed or sofa. I am too often one of the #millionsmissing

Please watch #Unrest – it’s now on Netflix. The link to the trailer is below. Yes it’s hard viewing. But it will open your eyes to the reality of the lives of millions with ME.