Wired and Tired!

“It wasn’t like that in my day” was my Nan’s favourite saying.  I used to laugh at her stories of the “olden days”, but it’s crazy how time flies, and now I find myself saying the same thing.

In the “olden days”, Dr Hunter visited our house with his leather case and stethoscope when I had measles. A very different scenario to my most recent exchange with my doctor, which went something like this.

Dear Matt, please can I have some prednisolone? I’ve got a flare-up of my AS. Many thanks, Andrea

Hey Andrea, pred ready to collect.  Let’s catch up in 10 days to see how it’s going.

I didn’t need Matt to visit me at home with his leather case and stethoscope (not to be misinterpreted 😊), nor did I need to see him during his surgery, so our email exchange was a very efficient use of our time.  I’m also pleased to report that I’m nearly finished with these annoying little tablets, of which I’m taking 6 a day and hoping that I can finally get some sleep when I’m done.  I’m completely wired on them, and those of you who know me will appreciate I’m hyperactive without steroids, so you can only imagine my current state of activity.  My Fitbit reported yesterday that I’d done 14 out of 14 active hours, which is bloody ridiculous when you think about it.  “Wired and Tired” is apt to describe my current demeanour.

Moving on, I’ve been questioning how I make decisions and conclude about anything and everything.  

Why? I hear you ask.

I’m keen to move with the times and not get stuck in the past and constantly moan about change. I want to embrace change and not use “bias” in any debate or discussion with our grandchildren; I don’t want to be critical of their era, and I’d love them to value my opinion, but you have to earn the right to that and be understanding of their generation.

However, “bias” is something that can definitely hold you back.  It’s worse than bias because it’s generally “unconscious or cognitive bias”. After all, we’re unaware we’re using it. I follow a guy on Twitter who reminded me of my sales training.  He said, “To be successful in business, you need to study psychology, cognitive bias and body language,” I understand why.

I tend to make decisions quickly, which can be beneficial, and, as the “experts” point out, it’s often better than procrastinating.  However, my problem is that I allocate equal amounts of time (i.e., very little) to big and small decisions.  My brain naturally tends to take shortcuts to not be overwhelmed by too much information.  Evaluating evidence requires a lot of mental energy, and my brain says, “Uh oh”, let’s not go there.  My unconscious mind is much more efficient; it uses my beliefs from my cultural environment and personal experiences to make immediate decisions.  In other words, I use my “unconscious bias” to make big decisions!  How scary is that? The problem is that sometimes, these shortcuts can result in wrong decisions, especially when rational, logical thinking is required. 

I’m lucky; I can get away with it most of the time because my husband, Jamie, does all the hard work for me.  If we have a big decision, Jamie has tons of mental energy and does all the extensive research required for us.  This means I’m presented with expert facts that I wouldn’t have found out myself, and we’ve mostly made good decisions between us.

So, when I realised I’m an avid user of unconscious bias, I put a few bullet points together to remind myself of these behaviours.

  • Only paying attention to news stories that confirm my opinion
  • Learning a little about a topic and then assuming I know all there is to know
  • Relying too heavily on the first piece of information I learn and discount everything else
  • Placing greater value on information that comes to my mind more quickly

And then, I decided on some actions:

  • Be aware when I’m using unconscious bias
  • Be more curious; curiosity should help me to pause long enough to ask questions
  • Strive for a growth mindset; rather than covering up mistakes, learn from them. I’m quite good at this, but mostly because of my career.  Learning from mistakes is beneficial in all aspects of life.
  • And finally, the most important:- Embrace the opposite.  Try to understand an issue from both sides.  This is difficult but incredibly valuable.  It’s especially helpful in improving critical thinking, enabling us to see the world more easily.

Empathy is, without doubt, the medicine the world needs right now as it seems to be running on steroids, a bit like me – Wired and Tired.

Where’s Doctor Matt when you need him?

Until next time…

The A Word: A tale of two halves

Hello everyone, and welcome to my blog. It’s a tale of two halves, the past and the future.  I was intrigued to know the number of times I’d been asked the question I’m going to answer in this blog, so I counted and can officially confirm it’s 74. Over the last 6 months, 74 people have written to ask if we’ve retired. I’m not surprised, as I’m sure it’s apparent that I swan around a lot.  I haven’t responded until now as I was unsure what to say, but yes, it’s official: at the ripe old age of 60, Jamie and I have retired (well, sort of!)

We’ve got loads of plans, so watch this space. Our biggest desire is to travel, and we’ve a long list of places we want to see and countries we want to visit.  We want to spend time travelling around Europe and specifically taking on some challenging walks in the Alps and Pyrenees. I’ve started to write, and whether I’ll become a published author, who knows, but I want to try. Jamie and I will continue to take on consulting assignments in the charity and private sectors in an advisory and coaching capacity, but only part-time. We’ve also got 3 grandchildren, so life will continue to be very busy.  Getting old doesn’t seem too bad and certainly has its advantages (unless, of course, you’re a banana).

I started working weekends at 14 and full-time at 17. Apart from a brief time out when I had my beautiful daughter, I’ve worked full-time all my life. I was lucky enough and worked hard enough to enjoy a successful career, and since the late 1990s, my jobs have been stressful, working long hours and incredibly rewarding. I’ve contributed to a private pension since my younger days, as has Jamie; we’ve sacrificed fast cars, expensive jewellery and material stuff in favour of putting money away for our future, and our plan was always to retire while we’re still fit enough to take on the challenges we’ve always talked about.

So, what was the most important thing I learned during my career that I will share with you?  Well, it’s quite simple – “just because someone’s opinion is different to yours, it doesn’t make them wrong”. Is that it? I hear you say! Well, let me share why that’s so important and why it can help you in all aspects of life, not just work but family and relationships.

I was born into a working-class family and brought up in one of the staunchest labour constituencies in the country. Socialism bordering on communism ruled.  You could not mention Maggie Thatcher (and still can’t) without being lynched, and that’s no exaggeration. In my late 20s, I moved to London and started working in the city, learning about capitalism, the complete opposite of what I was familiar with. I saw both sides of the argument.

I realised very quickly that to be successful, you have to appreciate that it’s OK for people to have different opinions.  It’s also OK for you to accept that because otherwise, it makes you seem intolerant of anyone else’s beliefs.

Making an extremist statement about something someone else likes doesn’t make you right. Instead, it makes you seem controlling and unwilling to listen to anyone else, and that’s not a good look.

One of the biggest reasons a company fails is a leader who is intolerant of other people’s views and opinions. A CEO who surrounds himself with yes-people will ruin their career and damage the company. “Yes”, people will always tell them what they want to hear, not what they should know. During my years in the city, I ran a large sales team. We were responsible for 100 million dollars of business each year, selling software to financial services organisations. We were successful because we worked as a team. We all had different views and opinions, but collectively, we would come to the right conclusion, often compromising our beliefs to secure the best outcome.

It’s even more important to be tolerant of other people’s opinions in our ever-changing world. Brexit and Covid have been incredibly divisive, fuelled by social media.  I know families and friends who’ve fallen out; how ridiculous. Remember, respecting others’ opinions doesn’t mean being untrue to our own. It requires us to recognise that others are entitled to look at the world differently and can expect a fair hearing when they share their views with us. Tolerance is not a sign of weakness. It’s a sign of strength.

This tolerance stood me in good stead, and I’ve left my working life behind with no enemies (well, maybe one 😊).

Finally, as I write my blog to raise awareness of autoimmune disease, I wanted to let you all know how pleased I am to see the back of winter. I suffer more pain in the cold, damp months, and my Raynaud’s has been far worse this winter. My nose, fingers and toes are affected, and I’m always cold. I don’t know about you, but our gas has gone up by about 30%, and now that we’re retired, we’re more watchful of our pennies, so it’s more thermals and jumpers for me next year. On the plus side, there are no mosquitoes or pesky things.

I’d like to end with a quote that rings true with the weather we’ve had recently. I love spring, and these few words from Charles Dickins summed it up.

“It was one of those March days when the sun shines hot, and the wind blows cold: when it is summer in the light, and winter in the shade.”

Until next time.. xx

Damn, I’m getting old!

Jamie’s photography always makes me look better than in real life 😂

Happy New Year, everyone, wow! 2022 is my 60th year; I never thought I’d make it, but here I am. 😊

Every month, I get many questions, not just about my life with AS, but all sorts of stuff. I try to answer as many as possible, but my response is often brief.  I’ve picked out the top five from 2021 and added more substance, so here we go.

How’s the book going?

I’ve had this question a lot recently, and to be honest, I’m finding it really difficult. I’ve just finished Chapter 10 (out of 32), so I’m not even halfway through.  I had hoped to be around the halfway mark by now, but over the last few weeks, I’ve had a bit of a confidence crisis, believing it’s not good enough and that I’m wasting my time.

I don’t know about you, but I’ve always heard little voices telling me how rubbish I am. They’ve regularly appeared throughout my career, especially when I’ve taken on more responsibility, or someone has been unkind with their words. They’ve been more vocal recently, and whilst I tell them to bugger off, they’re a bit stubborn – sometimes they listen, sometimes they don’t. Anyway, I had a good word with them over the Xmas break, and I’ve started writing again, so watch this space.

Do you live in Cornwall now?

No, not full time. Jamie and I have been holidaying in St Agnes on the North coast of Cornwall since the late 90’s. It was always our dream to spend more time there. We sold our house in Surrey and split the proceeds between our place here in Hampshire and a cottage in the village of St Agnes. We spend half our time here and the rest in Cornwall. We didn’t want to move lock, stock and barrel as our children and grandchildren are close by, and our love of football means we can still get to the home games easily.

Hampshire’s beautiful; we love it, but I don’t think we realised how different living in the country would be.  Everyone wears tweed and funny hats with feathers. We regularly hear shooting, and the local deer visit our garden daily to munch on our plants; they particularly like tulips. I’d never seen a Partridge before moving here. I thought they lived in pear trees, but apparently not; we see them in fields. Pheasants are ten a penny, moles dig up the grass, and we had mice!

Now I don’t mind mice OUTSIDE! But they stop being cute when they’re partying in your loft at night when you’re trying to sleep. Anyway, a very nice chap called Shane came to our house to have a word with them. I’d never had a pest control van in the driveway, but it’s common around here. Shane discovered where the mice entered our loft and blocked their little route. Apparently, they don’t live in our loft full time; they just visit at night; what for, who knows, but that’s the country for you. Shane also had many stories about rats, which I tried to shut my ears to, but unfortunately, I’m now fully briefed on the size of the rat problem in London!

How much exercise do you do daily, and how much do you weigh?

This was the most asked question last year. My optimal weight is 55kg (8.6 stones) but fluctuates.  I weigh 56kg, but I’m on a mission to lose that over the next few weeks.  I’m incredibly strict about not letting my weight get out of control, as it would damage my AS. That said, I firmly believe in the 80/20 rule and never deny myself threats. Jamie and I mostly eat healthy food cooked from scratch with lots of fruit and veg, but I also love a takeaway.

Looking at my stats for the last 2 years, my Fitbit tells me I average about 12k walking per day. I also do weights 3-4 times a week, core once a week and Yoga 4-5 times a week, so I’m very active. I’ve got a big appetite and eat three meals a day so I need to be active to maintain my weight.  I never diet, I don’t cut out any food groups, and whilst I don’t eat a lot of red meat, it’s still part of my diet.

Do you have Botox?

Ha ha, I always get asked this, even in the pub, and I never know whether it’s a compliment, as I think people look a bit weird with too much Botox, especially when they get older. I love the meme…

“Remember when the plastic surgeon was a taboo subject? Now you mention Botox, and no one raises an eyebrow”.

I did try it about 5 years ago; it was expensive, and I didn’t like it. I couldn’t frown and thought my face looked a bit plastic. I only had a small amount, too.

There are three key ingredients to good skin care – retinol, glycolic acid and hyaluronic acid. I use all three. Hyaluronic acid helps hydrate your skin, glycolic acid exfoliates dead skin cells, and Retinoids reduce fine lines and wrinkles by increasing collagen production.

Skin care is important to me, and I’ve become pretty knowledgeable. When I was young, we didn’t have the same career options as people do today. I just bumbled along and ended up in technology Sales. Whilst I loved my city career, I wouldn’t have chosen it. I think I’d have been a beautician or something similar.

How do you manage pain daily?

The last question and the most important. If I’m honest, with great difficulty sometimes. I had a flair-up before Xmas and had to increase my medication, which I hate. It’s subsided now, thank goodness.

A year after being diagnosed with AS, I ended up in A&E in the most severe pain imaginable. Those who know me will appreciate how desperate I was as I NEVER go to A&E, even when I ruptured the tendons in my arm. The result of this visit was a week on drugs, feeling completely spaced out. The combination included Diazepam, Tramadol and Amitriptyline; I’ve never had to take any of those drugs since.

The A&E nurse explained (“sternly”) that if I wanted to live my best life, I had to be able to deal with “flare-ups”, and that meant increasing my pills instantly rather than “putting up with the pain” and ending up in the state I’d been on arrival in her department.

So, to answer the question, pain management is vital. Self-help is critical. I continue to exercise as much as possible, which is difficult when you’re in a lot of pain.  I have to use all my willpower and positive mindset to do everything I can to stay in control. Oh, and yes, I take more pills!  We’re all responsible for our happiness, and I’m not into feeling sorry.  I certainly don’t want to make everyone around me miserable.  I’m not saying I’m an angel, and Jamie might chuckle when he reads this paragraph, as those closest to us have the most to put up with 😊.

Thank you for reading and sharing my blog. I wish you a happy and healthy 2022, and here’s hoping it’s AMAZING.

xxxxxx

Don’t Judge!

St Agnes Hotel
This month's blog has taken on a slightly different format.  I’ve written a little ode, which I hope you enjoy.  It does have a point, which I'll get to later. 

The Fake Psychic

Three years ago
At a village fair
A Psychic called out
Hey, you “beware.”

Me? I said
Why what’s in store
Sit down, she said
I’ll tell you more

An hour passed
A tenner I paid
What a story
She conveyed

I left her tent
Not a minute too soon
OH MY GOD
What a loon!

I found my man
To tell my tale
I wanted to share
All the detail

Jamie, I said
The psychic is a fruit
I have to say
I’ve had a real hoot

A virus will come
And the world will stop
From China, she said
A bat in a shop

From bat to human
The virus will form
And spread really quickly
With no time to warn

It’ll have a name.
After a Mexican beer
And it’s going to be
Very severe

The pubs will close
The shops will shut
All sports will cease
And no haircut	

The Psychic said
We’d be locked at home
Like being in jail
We can only phone

All travel will stop.
All borders secure
She was totally convinced
There’d be no cure

A jab we’ll have
To help a bit
And then a second
For another hit

And after two
We’ll have another
And we’ll still get the virus
It’s a real mother…

We’ll work from home.
No office banter
No Christmas party
No secret Santa

The schools will close.
Kids learn on-line
While parents drink
Gallons of wine

We’ll count the cases
Every day
And run a spreadsheet
With a numbers display

And when we think
It’s all in hand
It’ll come right back
Under a different brand

What’s your view?
I asked my man.
The same as you
A bloody scam

We sat and laughe
And laughed some more
This story was funnier
Than we’d heard before

But who's laughing now?
Three years on
"Corona" is here
She wasn't wrong

Most of us would have judged this fictional Psychic as a bit of a loon, especially given her ridiculous story. But, if we’d believed it, we could’ve cashed in; I reckon the bookies would have given us at least 100/1 on a story like that 3 years ago 😊
Moving on from the funny side, I’ve been judged on decisions I've made in the past, and it’s taught me a very valuable lesson – never judge anyone. You may think you understand, but you never truly know the whole story.
It’s easy to judge people, especially those who live with chronic pain.  For me, the winter months are much more difficult as the pain level increases with the damp and cold.  Many folks put up with much more pain than I do, too, and when people are unhappy and depressed due to their health condition, they are often judged for being moody. Depression often comes along with a chronic illness and can also be caused by medications. People need help and support with this, not judgement.

At the other end of the scale, when people are smiling and trying to stay positive like I do, it’s sometimes suggested that there’s nothing wrong with them. “They obviously don’t have pain if they can smile”.  In St Agnes here in Cornwall, there’s a saying made famous by an Aggie legend, and it continues to be used throughout the village every day– IT’S NICE TO BE NICE (and it really is).

Until next time, I wish you a Merry Christmas and a fabulous New Year.  Don’t make any New Year resolutions; they waste time, especially DRY JANUARY!

Gotcha!

#covid free!

I want to start this week’s blog by saying a big thank you. My last blog was the 2nd top read on 8th October.  Now, I appreciate that it’s only 1 day in October, but I’ll take that anyway 😊.

I know I’m a bit late again this month, and where have I been, you may well ask. Well, absolutely bloody nowhere, to be honest; we’re in COVID-induced isolation, and our normal daily lifestyle is called “quarantine”. I’ve read the 31 things to do at home in self-quarantine and concluded that other than eating, drinking and Netflix, it’s a bit dull.

Now let me tell you what happens when you get the COVID “Gotcha” prize, as it’s been an interesting process.  Jaimie tested positive during our weekly antigen test, and then me.  We’ve always taken a test every Monday, mainly because we live a normal life and feel it’s the right thing to do in line with Government guidelines.  There’s only been one Monday that I didn’t want to take a test, and that was just before we were leaving for our summer holiday in the South of France. Imagine it: the day before you’re about to go, you get the COVID Gotcha prize. Anyway, I forced myself to do the right thing, and fortunately, it was negative, just like every other Monday until now.

It’s weird when both lines come up on the antigen test; it’s like, “Bloody hell, I’ve got COVID”.  Having tested positive on the home kit, we booked our PCR tests, and it’s at that point that the COVID “process” kicks in.  You receive your skull and cross bone text message informing you you’re result is positive, followed by a barrage of other text messages from doctors, test and trace and loads of other helpful advice. Now, whilst it’s a bit overwhelming, this is a good thing; I’ve never felt so loved by so many people 😊.

But here’s the thing: test and trace are on the ball. They send you a link so you can fill in all the places you’ve visited, which in our case was very long. We’d had our grandchildren to stay, visited other family and had family visit us, been to football, been out for dinner in Wimbledon, went to crazy golf and ordinary golf, shopped at Sainsbury’s, had our eyes tested at the opticians, spent Friday night in the pub and went out for a Sunday Roast.  It took a lot of filling in, I can tell you.

So, where did we catch it? Impossible to tell. If you want to live a normal life like Jamie and I do, you will get the COVID-19 Gotcha prize at some point. We’re both double vaccinated; one of us had the AZ and the other Pfizer, and my booster was booked but had to be cancelled, and I now can’t have it within 30 days.

Test and trace also call you,  8.30am on a Sunday morning to be precise.  Where did they think we’d be on our way back from the local Saturday night rave! In fairness, they’re only doing their job, and the Sunday morning wake-up call wasn’t their only call. They like to check in regularly for a natter.  Your COVID-19 vaccination passport also gets confiscated! Now, I thought that was a bit harsh.  I’m not that stupid that I would travel, but I guess some people are, that’s why they do it. I’ll get it back in 14 days, so watch this space, and I’ll keep you informed.  I did download mine after Jamie’s was confiscated, as I knew what to expect, although why I did this, I can’t tell 😊.

Did we feel ill? Well, yes, certainly for the first few days.  Headache, night fevers, shivers, sore throat; it felt like flu.  More worrying are the neurological symptoms. Jamie has lost his sense of smell, and I’m so hoping it comes back. I’ve read that, on average, it takes about 28 days to return, but about 10% of people never return, which is concerning. I wouldn’t have wanted COVID before my vaccination, and whilst I would never lecture anyone on what they should or shouldn’t do, it seems selfish not to have the vaccine.

I’m the world’s worst at not wanting weird foreign stuff in my body (except Sauvignon Blanc, of course), and when I was diagnosed with AS, the worst part of the diagnosis was the thought of taking medication for the rest of my life, I hated it, and it took a long time to accept. So, I do have some understanding of the argument against the vaccine, but it’s got to be done.  We’re doing it for other people more than ourselves. I’ve learnt that you shed much less virus if you’ve been vaccinated, therefore doing your bit to keep it at bay.

Because I also write my blog to raise awareness of autoimmune disease, a lot of the symptoms I have are similar to my bad days with AS. Now, I appreciate my COVID symptoms are less severe because I’d had the vaccine, but it really brought it home to me how bad autoimmune disease is and how much we all have to put up with daily.

Hope you don’t get the COVID Gotcha prize; it’s rubbish, and remember, dinosaurs didn’t wash their hands and are extinct.

Until next time xx

FFS

FFS!

Three things bug me and make me mutter the famous three words, FFS, under my breath –  the courier company Hermes, the Waze Sat Nav we use and the way Rheumatologists measure and monitor disease activity in people with AS.

Let’s start with Hermes.  I mostly shop online.  In fact, I can’t remember the last time I bought an item of clothing or anything else from a shop other than Sainsbury’s.  I’m fortunate to be a bog-standard size, so most clothes I order fit.  I’ve no problem with DPD; Yodel has improved somewhat. I know the Amazon man by name, but Hermes, OMG, they are terrible.

During the COVID months, Hermes came up with the idea that they would photograph your parcel in your doorway as proof it had been delivered, so no signing was needed.  This is all good if it’s your bloody doorway; it mostly isn’t.  You then spend the rest of the day checking all your neighbours’ front doors to find the red one in your photo and locate your parcel.

Yes, their automated text service works.

“Your parcel will be delivered today between 2.17pm and 3.17pm.”

You plan your day around this useful information to ensure you’re home, but your parcel doesn’t arrive within its time slot.   It’s useless trying to call them as you get a “bot” giving you the same information as is on the parcel tracking app.  At about 6pm, you receive another message to say, “We tried to deliver your parcel, but you weren’t home”.  YES, I BLOODY WELL WAS, WE’RE IN LOCKDOWN, and then you go through the whole rigmarole again the next day. 

I’m also amazed at how dishevelled the parcel is when it arrives. What the hell do they do with them?  I ordered a pair of shoes from Next. After 3 failed delivery attempts on 3 consecutive days, all of which I was home, Hermes informed me they had lost my package!  The Next store reimbursed me, and the following day, it turned up, photographed on MY doorstep in the most bashed-up box I’d ever seen.  Remarkably, the shoes had survived and ended up being free!!

Moving on, why the Sat Nav, I hear you ask.  Waze works. It’s a great app, and as we split our time between Hampshire and Cornwall, we use it a lot!  It’s brilliant around London and the Home Counties, but in Cornwall, it’s debatable.  Jamie and I travel around Cornwall a good deal as we’re trying to complete the Cornish section of the southwest coastal path, as it plays a part in the book I’m writing.  Most of the 8 or 9 sections we have left are the furthest away from our cottage in St Agnes, and you’d be amazed at how innovative the Sat Nav gets at finding “the best route”.  Best for who, a car or a tractor?”.

I don’t like “little” roads, but our Sat Nav absolutely loves them.  Jamie does, too, so I’m outnumbered.  The A30 is the main road through Cornwall, but in the Summer, it’s a nightmare, so alternative routes need to be found, and our Sat Nav thinks it’s a genius at this.

Many roads are barely a car width wide even though they’re two-way.  You have to be able to reverse, sometimes for long distances, to find somewhere where you can squeeze past the Horse Box or Camper van coming the other way!  In the Summer, you often have something behind you, too, so the reversing gets more complex.  This is after the stand-off of who’s going to reverse first.  As I regularly explain to Jamie and our Sat Nav, how is this quicker than negotiating the traffic on the A30! The Cornish (and Jamie) also know the width of their cars, but you’d be surprised at how many people (including me) don’t, which makes the whole experience even more traumatic.  To make matters worse, our car has sensors which beep if something gets within a foot of bodywork, including the hedge, so you have that to contend with, too!  Beep, beep, beep, bloody beep, FFS, there’s a tractor approaching.

Sometimes, my heart sinks even further.  “Turn right” instructs the Sat Nav, and once you’ve committed, there’s no turning back.  The road is actually green; yes, grass is growing in the middle. There are no passing places, and 2 miles on, you meet Hermes coming the other way!

Finally, my last FFS.  Like many people, I haven’t seen my consultant face to face since before Covid.  We have chats on the phone, but it’s not the same.  I’m not alone; most people in my situation are in the same boat.  I’ve several ongoing issues which are being investigated, but I do feel like I’ve been left to my own devices; hopefully, that will improve over time.

With Ankylosing Spondylitis, a scale is used to measure the pain and disease activity called the Bath Indices.  It’s quite complex, but basically, it consists of several questions, and, as the patient, you provide a number between 1 and 10 (1 being no pain or restriction in movement and 10 being the maximum pain and discomfort).  I’ve never understood how this can help.  Surely, everyone copes with and feels pain differently.  Me giving a score of 5 might be a 7 for someone else or a 3.  Anyway, during our last telephone consultation, the time came.

Mrs Mead, can you tell me on a scale of 1-10 and then the questions start.  I was obviously feeling flippant, and the FFS words came to mind.

Me: “1, 2, 1, 3, 2, 1, 1,1,1, 2”

Perhaps I inadvertently gave the impression that I was in no pain, as I haven’t heard from my Rheumatologist since.  That’ll teach me 😊

Until next time xx

Mind Games

It’s been 2 months since my last blog, and I have lots to share.  I love to travel, and both Jamie and I have been very fortunate as our work has taken us to many beautiful places over the years.  I was mostly focused on Europe, and Jamie was more transatlantic, spending much time in the US.  We’ve always planned to travel more, and there are so many countries we want to see before we’re too old to enjoy them 😊 but, as everyone knows, Covid has put pay to most of our plans in the short term.  However, we decided we wouldn’t let it beat us this year, and we would venture out of the UK to France.  EasyJet had cancelled our flights (carried over from last year), so we decided to drive. 

As you all know, I write my blog to raise awareness of autoimmune disease, and this was a big decision for me as sitting down for long periods really aggravates AS.  It can also cause significant nerve pain, so we planned our trip to make it as comfortable for me as possible.

Leaving the UK on the Eurotunnel was the easy bit, and the journey through France was beautiful.  The scenery was amazing, and as most of the roads we used were toll roads, they were quiet and easy to drive; Paris was a bit hairy.  Door to door, we’d calculated the journey at around 850 miles, so we’d booked an overnight stay at the halfway mark.  I was stiff and sore when we arrived, even though we’d stopped several times.  I’d also increased my medication in anticipation of the journey and made sure I did my stretches.  The next morning, I felt OK.

The second leg of our journey to the South of France was stunning.  We drove through the Massif Central region, peaking at over 1000 metres through mountains and plateaus.  It was definitely one of the highlights.  The holiday was superb, meeting friends we hadn’t seen for two years, spending days at the beach club and nights in lively bars and restaurants.

Now for the hitch!  As anyone who has braved a trip out of the UK this year knows, you have to take a negative Covid test before you return home.  I knew this when we booked the holiday and we’d also taken out insurance to cover the costs if we needed to stay longer.  But when my holiday is finished, I want to go home.  I want to get back into the gym, back to yoga, and back to my routine. I want to mend my body from the inactivity and reduce my medication.  I want to do all these things for my mind as well as for the pain in my body.  I didn’t want to stay in France!

I was so nervous when we went to take the test that Jamie had to fill in my online form as my hands were shaking so much.  I was conscious we’d been out every night and was only mildly comforted by the vaccine passport used in France to get into all venues.  We also had friends who’d been double vaccinated and caught Covid whilst away, so I’d completely underestimated the chances that this test could be positive.

The result came through 30 minutes later as negative, which was a big relief.  You then have the hassle of filling out the passenger locator form and attaching all the stuff for UK customs.  I’m not sure you could go away without a smartphone, and the hassle continues when you get home, as you have to do a PCR test on or before Day 2.  We’re waiting for the results as I write.  If it’s positive, we’ll have to isolate.

Over the years, especially when I’m away and out of my daily routine, I completely understand the benefits of exercise for improving mental health.  I’m so proud of my daughter, who volunteers for a charity called Sport in Mind.  They are the UK’s leading mental health sports charity and deliver physical activity (sport, walking, dance and movement, gardening and exercise sessions) projects in partnership with our amazing NHS.  They work tirelessly to aid recovery, promote mental wellbeing, improve physical health, combat social isolation and empower people to move their lives forward positively.

If you do struggle with your mind due to constant pain like I do, I can’t emphasise enough the benefits of physical exercise.  I appreciate a lot of people with AS are less mobile than me, and there are so many other horrible autoimmune diseases that make exercise difficult.  But please persevere, as it will help, especially if you can get to the stage where it’s a part of your everyday life.

Finally, I want to say a big thank you to everyone who reads my blog.  I know it’s a bit intermittent these days. Still, it always reaches “top reads” on the blogging site, so you’re helping raise awareness of these awful autoimmune diseases that many people tolerate daily.

Until next time, lots of love xx

Define Normal Please

Just call me The Cow Whisperer

Firstly, this month, I’d like to say a big thank you to everyone who reads and shares my blog.  For the last two months, I’ve found myself in the UK’s top 5% of “viewed blogs”, so a great achievement, especially as I’m continuing to raise awareness of autoimmune diseases.

Since last month’s blog, I feel like some normality is returning.  I’ve received my 2nd jab, complete with the complementary headache and aching arm.  I’ve been to the dentist, spent time with our grandchildren, watched Jamie play 2 games of cricket, spent time with friends, had my hair cut, been to the pub, had a rheumatology appointment, and watched all episodes of Line of Duty with the other 12 million Brits.  I won’t ruin it if you haven’t watched it, but I was a tad disappointed with the big reveal of “H”, and, whilst I’m moaning, what is going on with this arctic weather?  I love the British people, though; we’re all outside in the freezing cold or pouring rain, drinking beer, eating cold food and thoroughly enjoying ourselves.  In fact, on the morning the pubs opened their gardens, it was snowing!  Anyway, we might have to get used to it as it seems pretty clear to me it will be bloody difficult to go to the Med 😊. 

This month, I’ve decided to go on about a subject that has helped me enormously in my career and personal life: emotional intelligence.  Personally, I often think that having a high EQ is just as important as a high IQ, which, in my case, is just as well. 

As my career involved selling technology solutions into the Financial services sector, the type of organisations I worked for often used psychometric analysis as a way of finding their required profile.  I’ve done many tests over the years, and whilst they’ve shown up some of my weirdest and most wonderful traits, I’ve generally produced results showing that I’m the lucky owner of a high EQ.

So, what is emotional intelligence?  Simply put, Emotional Intelligence is the ability to understand, use, and manage your own emotions in positive ways to communicate effectively, empathise with others, overcome challenges and defuse conflict. 

According to Daniel Goleman, an American psychologist who helped to popularise emotional intelligence, there are five key elements to it.  Jamie and I also use these five key elements as a way of identifying really good sales and sales management candidates in our executive search business. I’ve also written several white papers on this subject, which I’m happy to share. The five elements are:-

  • Self-awareness.
  • Self-regulation.
  • Motivation.
  • Empathy.
  • Social skills.

But what do they mean?

Self-awareness is the ability to recognise your emotions and understand the potential impact of your behaviour on others.   Self-regulation is not only identifying emotions but managing them as well. It’s like a social insurance policy that can prevent you from getting yourself into difficult situations rather than necessitating damage control after you explode and attempt to pick up the pieces!  I’m not saying I’ve never exploded, but I am aware I’m exploding (if you get my meaning 😊)

Motivation is easier to spot. Motivated people thrive when pushing themselves to do something they didn’t think they could do, like running a marathon. Think of entrepreneurs launching a business. A founder will dedicate all of their free time to pursuing a dream that may never materialise, yet they are propelled in their endeavour by a sense of passion and belief in what they are doing.  I’ve had the pleasure to work with several serial entrepreneurs, and they’re such inspirational people.

In my opinion, the 4th trait, Empathy, is the most important. It is about having the ability to identify and understand how another person is feeling and imagine yourself in that person’s situation. Empathetic people make an effort to make someone feel better. They are open to viewpoints beyond their own and avoid making judgments. 

Last but not least is Social Skills, probably my weakest trait in the EQ assessment criteria.  Sometimes, I don’t feel like being sociable, enjoy quiet time, and I’m OK with my company, too.  However, it’s always been an important part of my job.  People with great social skills make others feel valued and understand the importance of sincere connections in business and personal interactions.  I’ve had some great nights out with clients, and hopefully, they still remember me 😊. 

There are many different opinions about whether EQ can be learned or whether it’s a natural part of your personality.  The jury is out for me, but if you want more info, don’t hesitate to drop me a note, as I’ve spent much time studying EQ behaviour.

Finally, this month, and in my quest to raise awareness of autoimmune disease, I want to talk about Raynaud’s disease.  When you suffer from Raynaud’s, you get used to looking like you are part Zombie. It affects your blood circulation. When you’re cold, anxious, or stressed, your fingers and toes change colour and look “dead”.  My nose is affected, too.  Without getting all medical, there are two types of Raynaud’s; one’s an autoimmune disease, and the other isn’t.  Mine is secondary Raynaud’s, the autoimmune version.  It’s certainly become more of a disability with touchscreen technology, and being outside the pub drinking cold beer doesn’t help!

Until next time, here’s to 17th May, when more “normal” stuff happens.

Lots of love xxx

Glass Half Empty?

Warrior III

This Warrior III pose is about balance and stability. I’m working my standing leg quite hard as I’m balancing all my weight on it.  Specifically, the pose also accesses all the muscles along my spine, holding the upper body long and straight and digging into my hamstrings in the extended leg.  It’s not perfect, but I’m getting there….

Uh-oh, I’m going to be a bit controversial this month!  I love people with opinions, even if they differ from mine; respectful debate is great.  What really bugs me is people who “sit on the fence”!  So here we go; I’m not sitting on the fence with this one 😊.

When I set off on my journey to share my story of living with an autoimmune disease, I set up an Instagram account separate from my own.  My plan was to post my blogs and reveal lots of information about my life with Ankylosing Spondylitis and the coping mechanisms I’ve learned over the years.  This new account was called “living_with_autoimmune”, and loads of people with autoimmune diseases connected to me and me to them.  However, after a few months, I hated it; it was the most depressing account ever!  Every day, I would trawl through everyone’s woes and self-pity, and after a while, I stopped even going to the account.  I would post my monthly blog and quickly revert back to my own cheerful account with all the lovely people I follow – family, photographers, foodies, health and fitness tips, yoga and fashion, all of which make me smile.

I don’t like self-pity, and the term generally applied to people with this trait is “Victim Mentality”. I think I’m sufficiently qualified to hold this opinion as I’ve lived with pain most of my adult life.  Some mornings, my AS is so bad I struggle to walk.  During one really bad flare, I had to take the most terrible concoction of drugs known to mankind; I was on a different planet from everyone else that week.  Only my immediate family knew the extent of my pain, and this led to my gripe with the “victim mentality”?

First of all, what is it?  “Victim Mentality” is someone who sees themselves as a victim to accrue sympathy and empathy. These people have a perpetual need to have their suffering acknowledged.  Other people or circumstances are always to blame.  Any effort to help them will fail, so there’s no point trying.  When bad things happen, they rarely take responsibility for them and blame the world?  It’s an acquired personality trait in which a person tends to recognise or consider themselves as a victim of the negative actions of others.

It’s not a formal medical term. In fact, most health professionals avoid it due to the stigma surrounding it, but it’s real, and it’s all over my autoimmune Instagram account.  In my opinion, if people don’t put any effort into helping themselves, living with an autoimmune disease will be a million times worse. 

There’s loads of research to suggest Victim Mentality is a problem in the workplace, too. It’s challenging for a manager, as often, their team member will react negatively to any attempts to change this behaviour or mindset.  They usually get defensive or act in a passive-aggressive way toward anyone who is just trying to help.   There’s lots of advice about how to deal with this kind of person, but I’m not great with the sympathy card; I tend to ignore this personality trait and move on.  So, now you get the picture as to why I’m closing down my autoimmune Instagram account.

Moving on, I thought I would continue on my controversial path and get everything on the table in one blog so I can return to my lovely self next month 😊.

Who else gets irritated by some “celebrities” and their predictable politics, the ones who sit within gated communities preaching to the rest of the working world about topics that will never truly affect them.  Social issues are like fashion trends to many people, worn in front of a camera lens to garner heaps of attention and praise. As to the social issues they adopt, sometimes they prove surprisingly ill-informed. But who cares about that when the real goal is publicity?

One of the social issues that doesn’t get enough attention is homelessness. I mentioned in my last blog I’d talk briefly about my time working for Crisis (the homeless charity).  Look, I’m no saint, but this experience did provide me with a real insight into the challenges faced by many people who find themselves living on the streets.  I haven’t done as much charity work as I would like. Hopefully, retirement will provide more opportunities, but the 3 years I worked for Crisis were eye-opening. 

I had no useful skills; for example, I couldn’t cut hair, treat someone’s feet, or assess them medically, so I was mostly in the kitchen serving food or going out on the minibus with hot soup to feed those who didn’t want to come to the shelter, or frisking guests at the door to make sure no drugs, alcohol or weapons were brought it.  I got quite good at helping them hide their treasure ready for when they left.

Crisis has released many stats over the years on why people find themselves homeless, and a high number suffer from ill mental health or drug/alcohol dependency.  However, many of the people I met were driven to dependency through the rubbish things that had happened in their lives.   None of the guests I had the pleasure to meet in the Shelter had a “victim mentality”; they took responsibility for their situation, and I never once heard anyone cast blame for their predicament; they were incredibly grateful for the help and advice they received.

The point of my story is that we all walk a very fine line in life; we all fall off that line now and again but manage to pick ourselves up and carry on.  Sometimes, though, the things that happen to us are too big to cope with, and when we fall off, try as we might, we can’t get back up.  You never know what’s going on in someone’s life, which is why it’s so important to be kind. 

Finally (thank goodness, I hear you say), our freedom feels much closer than it did at Christmas.  We’ve seen our families (outside in the cold), and Jamie and I are waiting patiently for 12th April so we can go to the pub for a pint.  I look like Alice Cooper with my mop of multi-coloured hair, so 20th April (haircut day) cannot come soon enough.

Take care, folks, thank you for reading and sharing my story xxx

Faking It

Supta Virasana

Here we are in our 3rd national lockdown, and I think it may be a while before it ends.  During the 1st lockdown (a very long time ago), I started online classes to teach myself to dance.  I’m still learning, and pleased to report that I’m looking forward to showing off my new skills.  I’ve recently progressed to rock and roll while blasting Elvis Presley’s Jailhouse Rock!  As well as working, I’m still doing my daily workouts, walking around 15,000 steps a day, and continuing to practice yoga.  I have to say that out of everything I do to help my Ankylosing Spondylitis, Yoga is by far the most enjoyable.

I write my blog to raise awareness of autoimmune diseases, and it’s a well-known fact that exercise can help with the challenges we encounter in everyday life.  If you’ve been struggling to get your exercise regime kick-started, I thought I’d share a really good piece of advice I picked up during my sales training that will help if you can’t get motivated.  It only takes 30 days of perseverance to create a new habit and, more importantly, 66 days for a new behaviour to become automatic.  There’s lots of research on this subject, but a good study published in 2009 by the European Journal of Social Psychology provides information to support this.

So, when I decided to practice Yoga, I started with a 30-day programme to learn the basics.  Wow, I’ve progressed so quickly and surprised myself at how much I’ve come to enjoy this daily ritual.  I do some relatively advanced sessions now, usually for about 40 minutes a day, and whilst I can’t do all the yoga poses yet, I see improvement every time I take to the mat.  I appreciate I’ve good reason for trying everything I can to keep well, but there are many benefits associated with Yoga. If you take anything from my blogs, I ask you to look at an online beginner’s yoga video on YouTube; it will change your life in only 30 days! 

Moving on, the main subject of this blog is “Faking It”.  You’re probably thinking, “OMG, what’s she going to say now?”!

During my early career, I often felt like a “fake”, and I’ve since learned it’s a common feeling.  Many skilled, accomplished executives fear that they’re not good enough—impostors who are bound to be found out. In many walks of life, some high achievers believe they are complete fakes. To the outside observer, they appear to be remarkably accomplished; often, they’re extremely successful leaders. Despite their achievements, however, these people sense that they are frauds. This neurotic imposture, as psychologists call it, is not a false humility. It is the flip side of giftedness and causes many talented, hardworking, and capable leaders—men and women who have achieved great things—to believe that they don’t deserve their success.

In my situation, not having a University degree probably contributed to feeling like a fake as I worked with some incredibly clever, talented people.  I often thought I only scraped by because of luck or by fooling others into believing in me.  I felt deeply insecure about my work and accomplishments, constantly anxious that I’d be exposed as a fraud.

This did get better, by the way 😊.  I started to keep a spreadsheet of the deals I’d closed to remind myself I was doing OK.   In the later stages of my career, just before Jamie and I founded our successful business, my confidence improved.  I remember driving across London in a chauffeur-driven car with the CEO of a very large, well-known American technology organisation.  They were buying the company I worked for and, as Head of Sales, I was taking him out to meet some of our clients (complete with his bodyguard!).  It only took one compliment from him on my relationship with one of our largest clients for me to think I wasn’t too bad after all!  So, if you’re a senior executive reading my blog, always take time to praise people for good work, as I can assure you it really makes a difference.

This “fake” feeling isn’t just the case in business as we all play roles on the stage of life, presenting a public image that sometimes differs from the private person we actually are.   The studies of the famous Canadian sociologist Erving Groffman are interesting as he provides a detailed account of this in his book “The Presentation of Self in Everyday Life.”   

Groffman argues that as humans come in contact with each other, they adopt and play roles to fulfill their goals, establishing the relationship between the actor and the audience. Using this metaphor, he explains that we strive to convince those around us of what we are trying to portray. Just like a good actor in a movie, the degree to which people believe we all play a role in our ultimate success. He explains that the “front stage” is where we perform or conform to what people expect, and the “backstage” is where we forget the script and behave without fearing disapproval.  An interesting concept and a good read for lockdown boredom 😊..

Finally, I want to finish on the current situation we find ourselves in here in the UK.  Like many of you, Jamie and I have such a full life, and I’m really missing normality; my attitude to lockdown is better on some days than on others!  I do appreciate we’re not “stuck” at home. We’re “safe” at home and, more importantly, helping to keep others safe.  I think it’s fair to say we must try to make the most of this time rather than just play a waiting game until things get easier and better.  Life will always be complicated.  We must learn to be happy right now. Otherwise, we’ll run out of time.  Easier said than done, but perhaps worth a try.

Until next time, keep safe and try Yoga xxxx.