Living-with-autoimmune

The A Word : 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 60^th year; I never thought I’d make it but here I am. 😊

Every month I get loads of questions, not just about my life with AS, but all sorts of stuff. I do try and answer as many as possible but my response is often brief. I’ve picked out the top five from 2021 and added a bit 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 a third of the way 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 suffered with little voices in my head telling me how rubbish I am. They’ve regularly appeared throughout my career, especially when I’ve taken on more responsibility or if someone has been unkind with their words. They’ve been more vocal recently and whilst I do 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, actually 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 when they’re partying in your loft at night when you’re trying to sleep they stop being cute. Anyway, there’s a very nice chap called Shane who came to our house to have a word with them. I’d never had a pest control van in the driveway before but it’s quite common round here. Shane managed to find out where the mice entered our loft from 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 lots of 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 we have in London!

How much exercise do you do a day and how much do your weigh?

This was the most asked question last year. My optimal weight is 55kg (8.6 stones) but it does fluctuate. I currently weigh 56kg but I’m on a mission to lose that over the next couple of weeks. I’m incredibly strict about not letting my weight get out of control as it would be really damaging for my AS. That said, I’m a firm believer in the 80/20 rule and I never deny myself treats. 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 that I average about 12k per day walking. 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 its 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 complement or not 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 I thought my face looked a bit plastic. I only had a small amount too.

In my opinion there are three key ingredients to good skin care – retinol, glycolic acid and hyaluronic acid. I use all three. Hyaluronic acid helps in hydrating your skin, glycolic acid exfoliates dead skin cells and Retinoids reduce fine lines and wrinkles by increasing the production of collagen.

Skin care is important to me and I’ve become pretty knowledgeable over the years. 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 on a daily basis?

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 I was diagnosed with AS I ended up in A&E in the most severe pain imaginable. Those of you 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 and 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 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 apply a positive mindset to do everything in my power to stay in control. Oh and yes, I take more pills! We’re all responsible for our own happiness and I’m not into feeling sorry myself. 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 its those closest to us who 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

The A Word: Judge and Jury

This months 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's 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 sport 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 you view?
I asked my man
The same as you
A bloody scam

We sat and laughed
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

I'd heard on the street
A bet she did make
That the world would stop
That Psychic's no fake!

With my tenner too!!

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 and expecially those who live with chronic pain.  For me, the winter months are much more difficult as the level of pain increases with the damp and cold.  There are many folk who put up with much more pain that 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, wishing you a Merry Christmas and a fabulous New Year.  Don’t make any new year resolutions, they’re a waste of time, especially DRY JANUARY!

The A Word: Gotcha!

I want to start this weeks blog by saying a big thank you. My last blog, FFS, was the 2^nd top read on 8^th October. Now I appreciate that’s only 1 day in the whole month of 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 a 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 arrived at the conclusion that other than eating, drinking and Netflix, it’s a bit dull.

Now let me tell you about what happens when you get the Covid “Gotcha” prize as its been an interesting process to go through. 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 we 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 to the South of France. Imagine it, the day before you’re about to leave and 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 a bit 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, and here’s the thing, test and trace are really 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, it seems to me that you will get the Covid 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 either. They like to check in regularly for a natter. Your Covid 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’m supposed to 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 don’t know 😊.

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 in about 10% of people never comes back 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 a tad selfish to me not to have the vaccine.

I’m the world’s worst at not wanting weird foreign stuff in my body (with the exception of 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 on a daily basis.

Hope you don’t get the Covid Gotcha prize, its rubbish and remember dinosaurs didn’t wash hands and they’re extinct.

Until next time xxxxx

The A Word: FFS

There are three things that really 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 on-line. In fact, I can’t remember the last time I bought an item of clothing or anything else for that matter 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 have 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 well and 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. Its 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! Its 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 South-West 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.

Lots of 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 whole experience even 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’s 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 its not the same. I’m not alone, most people, in my situation are in the same boat. I’ve a number of 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 a number of 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 sore 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 a bit 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 at all, as I haven’t heard from my Rheumatologist since. That’ll teach me 😊

Until next time xxxx

The A Word: 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 a good deal of 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 weren’t going to 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 took the decision 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 of time 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 though. 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 a number of 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 itself 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 and 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 on-line 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 who caught Covid whist 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 to me. 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 smart phone 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 very 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 in a positive direction.

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, but it always reaches “top reads” on the blogging site so you’re really helping to raise awareness of these awful autoimmune diseases that many people tolerate daily.

Until next time, lots of love xxxx

The A Word: Sink or Swim?

Sorry I’ve been missing for a while life’s been busy. This month’s blog is a tale of two halves and I’ve called it sink or swim for reasons that will become obvious. Writing it has brought back memories that have been hidden away for decades.

When I was 7 years old, I nearly drowned. I can’t remember much about the event itself other than I was pulled out of the local river by a friend’s older brother, having been under water for too long. I was unresponsive for a while, received some form of CPR, brought back most of the river water I’d swallowed and went to hospital to be checked over. The tiny piece of memory I have of my drowning episode is stepping off a stone on which I was standing, thereby taking me out of my depth. The rest is what I learnt afterwards.

It wasn’t just this trauma that contributed to my fear of water, but the aftermath. Somewhat understandably, growing up, I was never ever allowed near water again without the presence of an adult so I just didn’t go. I had some swimming lessons in the local pool, but my fear of open water increased the older I got. I’ve swum in the sea when abroad on holiday, but never go out of my depth and to be honest, I just prat around rather than swim. I do swim in pools, but, its not something I enjoy. I don’t go on boats and I haven’t swum in the sea in England since that fateful day; that is until this week.

As everyone knows, I write my blog to raise awareness of autoimmune disease and over the course of the last 18 months some very kind readers have sent me lots of information about the benefits of cold-water swimming for sufferers of autoimmune disease. Research suggests that if I can adapt to cold water through repeated immersions, it may reduce my body’s inflammatory response. This makes complete sense to me but trying it out was a different matter.

In general sea temperatures in Cornwall range from around 7°C during a cold winter up to 18°C in the warmer summers. For those reading my blog outside of the UK, Cornwall is South-West England and does tend to be 1 or 2 degrees warmer than other coastal areas further North. To put this into perspective yesterday’s sea temperature where we are in Cornwall was nearing 17 degrees (16.7). Compare this to the Mediterranean, Malaga for instance , where its currently 22 – 24 degrees or Naples in Italy where it is around 26 degrees.

So, 4 days ago, my sea swimming adventure started. I had no wet suit, just a bloody holiday bikini as I don’t own a swimsuit and, boy, was it cold! I immersed my feet until they were so numb, I couldn’t feel them. Then I managed to cover my legs until I couldn’t feel them either. I’d listened to all the RNLI advice about the dangers of cold-water swimming if you’re not used it. I knew I had to enter the water slowly to get over the peak cold shock response and to be able to control my breathing before starting to swim. I didn’t want to bail out. It was really hot outside, and this was my best chance so, mind over matter, off I went, swimming and swimming and swimming until I was exhausted, and it was absolutely amazing. I read afterwards cold-water swimming activates endorphins, the chemical the brain produces to make us feel good and it certainly made me feel good. I was so pleased with myself too for putting my fear to one side and just getting on with it. Jamie and I have swum every day since and we’re now considering investing in wetsuits so we can continue sea swimming when the air temperature is not so warm.

Has it improved my AS? My honest answer is I don’t really know. Its probably too early to assess and it will need to be a regular activity to make any real difference. I think this completely unrelated, but last night I did have one of my “nerve stabbing headaches”. I’m lucky enough not to suffer these regularly but when I do, they’re terrible. It’s called occipital neuralgia and it’s when the occipital nerves, the nerves that run through the scalp, are inflamed. This causes headaches that feel like severe piercing or shock-like pain in the upper neck, back of the head or behind the ears. I can’t even brush my hair as it’s so bad. I also get this down the side of my face. I have an ongoing prescription for my neuralgia so I’m able to sort it relatively quicky, but the medication makes me really drowsy and muzzy which I hate so I don’t use it much. I succumbed last night and can still feel the effects of the tablets today but whoever was stabbing at my head has thankfully stopped.

Moving on, work has picked up and we’ve closed some business for the first time since the pandemic began. I’ve written 6 chapters of my book and I’m thankful I’ve given myself a year to complete. Jamie and I still have about 20% of the coastal path to walk which we need to do quickly so it doesn’t delay my writing but latterly it’s been too hot. Yoga is progressing well, my flexibility has improved massively. Our grandchildren stayed and I now seem to be following every footballer on the planet on Instagram! And Jamie and I are really enjoying ordering a pint at the bar since Covid restrictions have been removed.

Finally, I couldn’t write a blog without talking about COVID! What a nightmare, every time I get optimistic about normal life returning, Covid packs another punch. We cancelled our French holiday last year and the owners of our apartment were kind enough to carry over our deposit to this year. Two weeks ago, we rebooked for the last two weeks in August. I was very excited until the announcement was made that quarantine will still apply to all passengers arriving from France, the only country on the amber list where we’re required to self-isolate for 10 days. EasyJet has already cancelled the flights we booked 10 days ago so if we do go, we’ll drive. Jamie and I driving to the South of France will create many memories, I’m sure!

Thank you for taking the time to read my blog, my takeaway this month is that whilst my swimming technique was pretty terrible, all I felt was relief. Overcoming fear feels so good. Perhaps I can try speed boats next.

Take care and bye for now xxxx

The A Word: It’s only 2 Miles!

I’m a bit late with my monthly bog; life is very busy. When I’m not working, I’m walking and when I’m not walking, I’m writing! My big news is that I’ve started my book, after a couple of months in the planning stage, I’ve begun to write, I’m up to Chapter 3 and really enjoying the experience.

Its not as easy as I’d originally thought. I’m hoping my book will be good enough to entice a Publisher, so it needs to be quite meaty. By that I mean I need to write between 3,000 and 5,000 words per chapter for about 30 chapters which isn’t easy. I’ve figured you need to know a lot about your chosen subject and be confident in your research to produce something appealing enough for people to want to read. As my fiction book features the Cornish coastal path, Jamie and I also need to have completed it – the whole 260 mile stretch from Bude on the North Coast around Lands End and The Lizard and up the South side to Plymouth. We’ve probably walked about 75% of it since we started last year so we need to get cracking and walk the missing pieces, one of which we did on Tuesday. It definitely brings a book alive when the author has experienced their subject matter.

We’re keeping a log (so we can get our completion certificate), and by far the largest segment missing for us is from Bude to Padstow, too much to tackle in one day so we’ve taken the advice of the coastal path walking guide and broken it down into manageable sections. So, on Tuesday we walked the section from Bude to Crackington Haven, what a day!! We left St Agnes at 7.45am to make sure we arrived in Crackington Haven in time to get the 9.23am bus to Bude. We’d parked up in Crackington Haven, so the car would be waiting for us on our return.

After a pleasant bus ride to Bude, complete with masks, the walk started off relatively easy on a grassy path along the back of the beaches to Widemouth Bay. Widemouth Bay was OK but very busy, and not one of my favourite Cornish beaches. I knew from our research on this section that this easy start should not mislead us into imagining the whole day will be like this. The Southwest Costal path notes had described it as challenging and strenuous! I could only remember one other section I would describe using those words.

The Path soon proved their description was right as it became rough and narrow in places and plunged into steep valleys, including Scrade which is one of the deepest and steepest valleys on the Cornwall section of the whole walk. One of the things I love the most about walking the coastal path is the wide, open views of the Atlantic from high cliff top paths where you’re always conscious of the force of the sea and winds. This walk didn’t disappoint. It was baking hot, I’d forgotten my hat, the sea was relatively calm for the North Coast, but it still looked wild and feral as we stood and stared out at the different shades of blue while catching our breath.

We were starting to get tired, and I was quietly relieved when we saw a coast path sign saying Crackington Haven 2 miles. Now, I’ve walked 2 miles on many occasions, but these 2 miles were endless. The person who put up that sign was definitely “having a bit of a chuckle”. Jamie made me laugh by likening the 2 miles to “a public flogging that goes on all day”. They were the most challenging 2 miles I’ve ever walked, and I’ve been up Scafell Pike and Great Gable, not on the same day I might add. At one point I seriously thought they’d moved Crackington Haven 10 miles down the coast and so did a group of 4 walkers I’d mentioned this to who we’d been following. We’d all stopped to take in the views AND catch our breath, and as one of their party was struggling a bit, Jamie and I went on ahead eating the refreshing mints they’d provided.

My legs were burning from all the “ups”. I was finding the “downs” harder still as you have to engage your core to stop you slipping and my toes felt bruised because my feet were pushing forward into my boots on the endless downward slopes. As the path rounded the 400-foot Pencarrow Point we could finally see Crackington Haven and our car! It’s a pretty village, with a relatively small surfing beach compared to some of the larger ones near St Agnes. It also has a gaggle of pretty cottages, two café’s, a shop, and a pub. It was a bit early for a pint, so we passed on the pub in favour of an ice-cream.

Given the walking still to do and the interference of work, I’ve allowed myself 12 months to finish my book so watch this space.

Finally, as I write, Joe Biden has arrived in Cornwall ahead of the G7 and the others are arriving today. I appreciate people have different opinions about the usefulness of this forum and perhaps it would’ve been easier via Zoom. Jamie asked me if I knew who the 7 countries were, I guessed 6 – UK, Germany, France, US , Japan, and Canada but I couldn’t get the 7th (sorry Italy). Apparently, Russia joined in 1998, creating the “G8”, but they were excluded in 2014 for their takeover of Crimea.

I’m pleased that China has never been a member, I’m still cross with them over Covid. Despite its large economy and having the world’s biggest population, its relatively low level of wealth per person means it’s not seen as an advanced economy in the way the G7 members are. India, South Korea, and Australia have been invited this year which is nice. We also bumped into Extinction Rebellion today when we went to Godrevy to spy on Carbis Bay. It’s probably the closest you can get to Carbis Bay. One of the things I noticed about their protest was they all still had Covid hair; come on guys, the hairdressers have been open for weeks now. It appears that the whole of the British Navy has turned up too. Cornwall certainly disappoint with the mist and fog 😊.

Finally, before I pop off, an update on the reason I write this blog, to raise awareness for autoimmune disease. My consultant and I (note the correct use of grammar) are still going through the alphabet of autoimmune disorders to establish the reason for all my new symptoms. It’s a full-scale operation with more blood tests last week and other stuff to follow, I’ll keep you updated.

Thank you for taking the time to read and share my blog. It regularly features in the top 5% now, I’ve no idea why!

Until next time xxx

The A Word: Define Normal Please

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 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 2^nd 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 in case you haven’t watched it, but I was a tad disappointed with the big reveal of “H”, and, whilst I’m having a moan, 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 cold beer, and 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 its going to be bloody difficult to go to the Med 😊.

This month, I’ve decided to rabbit on about a subject that has helped me enormously in my career and my 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 different tests over the years and whilst they’ve shown up some of my more weird and 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 a number of white papers on this subject too 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 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’ 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 run 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 endeavor by a sense of passion and belief in what they are doing. I’ve had the pleasure to work with a number of serial entrepreneurs and they’re such inspirational people.

In my opinion, the 4^th trait, Empathy, is the most important. It 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 are Social Skills; probably my weakest trait in the EQ assessment criteria. Sometimes I don’t feel like being sociable, I enjoy quiet time and I’m OK with my own 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 both 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 a lot of 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 your 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 touch screen technology and being outside the pub drinking cold beer doesn’t help!

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

Lots of love xxx

The A Word: Glass Half Empty?

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 for me, 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. Its not perfect but I’m getting there….

Uh-oh, I’m going to be a bit controversial this month! I love people who have opinions, even if they differ to 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 autoimmune disease, I set up an Instagram account, separate to 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 learnt over the years. This new account was called “living_with_autoimmune” and loads of people with autoimmune disease 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 up I had to take the most terrible concoction of drugs known to mankind; I was on a different planet to everyone else that week. Only my immediate family knew the extent of my pain and this leads on to my gripe with the “victim mentality”?

First of all, what is it? “Victim Mentality” is someone who sees themselves as a victim for the purpose of accruing 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 its real and its 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 workplace too. It’s challenging for a manager, as often, their team member will react negatively to any attempts to change this behavior or mindset. They often 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 Instragram account.

Moving on I thought I would continue on my controversial path and get everything on the table in one blog so I can go back 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 a lot of these people, to be 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 my many people who find themselves living on the streets. I haven’t done anywhere near as much charity work as I would like, hopefully retirement will provide more opportunity but the 3 years I worked for Crisis were a real eye opener.

I had no useful skills, for example I couldn’t cut hair, treat someone’s feet, 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 have released many stats over the years on why find people find themselves homeless and a high number suffer from ill mental health or drug/alcohol dependency. However, a lot of the people I met were driven to dependency through the rubbish things that had happened in their life. None of 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 just 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 a lot closer than it did at Christmas. We’ve seen our families (outside in the cold) and Jamie and I are waiting patiently for 12^th April so we can go to the pub for a pint. I look like Alice Cooper with my mop of multi coloured hair so 20^th April (haircut day) cannot come soon enough.

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