Living-with-autoimmune

The A Word: It was one hell of a ride!

Hi everyone, this month’s blog is about “experiences”. The definition of which can be described as “an event or occurrence which leaves an impression”. The experience I’m going to chat about today definitely left an impression, but what kind of an impression I’m about to share. Apparently it’s better to spend money on experiences than on material stuff as it makes you happier. I had to question whether the £2.00 I spent on this particular experience made me happier than if I’d bought a bar of chocolate, but here we go.

As readers of my blog know, Jamie and I are currently walking the entire length of the Cornish coastal path. It’s nearly 300 miles in total and we’re attempting to finish it this Summer. We’ve 5 more sections to walk but they’re the most difficult and logistically challenging from where we’re based in St Agnes. Last week we completed one of them – from Polruan to Polperro. It’s an 8-mile stretch which sounds relatively easy but the total ascent was over 610m which is also the height considered necessary to be called a mountain as opposed to a hill. So, in short, we walked 8 miles up a mountain.

This particular segment was also challenging to plan. We often do a circular walk or even a return but because this walk was classified as strenuous and it was hot, we decided to park in a National Trust car park in the middle of the two destinations. We would then walk the 4 miles to Polperro making sure we arrived in time to get the bus to Polruan. There are only two buses a day so it was vital we didn’t miss it. Once off the bus at Polruan we would complete the remaining 4 miles back to our car park thereby completing the whole section.

So, what’s the problem I hear you say. Well, the day started off wonderfully, the coastal views were magnificent and with the sun shining brightly, the water was a stunning turquoise. The 4 miles to Polperro were exquisite, albeit with lots of large climbs. We arrived in Polperro surprised to see the bus appearing round the corner right on time and this is where the fun starts. Those of you who read my blog about our Satnav know I don’t like small roads. If you want to drive to any of the beauty spots in Cornwall, small roads are a necessity so I was gradually getting used to them. That is, until the day of our walk when I was so traumatised its set me back years. The first thing I noticed when I boarded the bus was a seat belt. Now, whilst I don’t take the bus regularly, I’ve travelled on them enough to say I’ve never seen a seat belt until now. I also observed I was the only one who fastened mine. It’s also fair to say that the narrow roads are supposedly two-way and whilst the Yorkshireman driving our bus didn’t say “brace yourself, its going to be a hell of a ride” I did think it might have been appropriate to provide some warning.

We set off on the 8-mile journey with not an “A” road in sight, in fact I’d be surprised if we made it on to a “B” road. For me, I kind of expect a road to be tarmacked, but I can only describe the first part of the journey as a track with grass in the middle. It didn’t stop the Yorkshireman from hurtling along without a care in the world, despite the potholes and blind bends and zero knowledge of what could be lurking around the next corner. I asked Jamie a couple of times to wear his seatbelt much to his amusement. We weren’t wearing masks either as these appear to be obsolete on this particular route in Cornwall but I did think my mask might have been useful to throw up in.

Eventually about halfway through, around the 4-mile marker someone rang the “request to stop” button. Now, imagine this, we’re in the middle of nowhere, not a shop, pub or house in sight and the Cornish lady who’d been chatting away merrily to the Yorkshireman wanted to get off. Everyone remaining on the bus looked around and I’m pretty confident, that, like me, there was nothing that resembled a dwelling within view and we could see an exceptionally long way! The only thing I did notice was one of those little signs indicating that the road was going to get narrower ahead. WTF I thought privately to myself.

On the entire 8-mile expedition we only passed 3 other vehicles hurtling towards us in the opposite direction. I’m not kidding when I tell you it was a bloody miracle we didn’t crash. Unbelievably there were two places on that 8-mile trip that were wide enough to paint a white line in the middle of the road. Well, when I say wide enough, it still wasn’t my idea of a road. We met a “smallish” removal lorry in one of those places and a DPD van in the other. The third vehicle we met was a car. The Yorkshireman driving our bus wasn’t impressed with the car driver and called him an incompetent “so an so” who didn’t know the width of his own bloody car. At this point we were nuzzled closely into the hedge while the poor chap driving the black Mazda was in shock at meeting a bus, being driven at 60 mph by an irate Yorkshireman on a track in the back of beyond. To my amazement, we arrived at our destination at the scheduled time. Really? This was the norm! I’d been convinced we’d be at least 10 minutes early.

Whilst I lived to tell this tale I did feel like a cat on its 8^th life when another crazy thing happened that day. After we’d completed the remainder of our walk and relaxed into the car for our journey home, we only went and met the ONE remaining bus of the day hurtling towards us in the opposite direction. Fortunately, Jamie does know the size of our car and we were able to nudge past by tucking in the wing mirrors, without too much squealing from the passenger seat.

Movng on, walking really does help with my AS. I write my blog to help raise awareness of autoimmune disease and it regularly makes the top 5 read on my blog site so I do get a lot of traction. I also get loads of questions about why walking helps so much. Those who live with AS mostly have joint deformities, fused joints like my sacroiliacs and further fusing of the spine, so fear of getting hurt does discourage people from exercising. However, walking is mostly minimal impact so helps to maintain joint motion and function. For me it also helps ease pain and improve my posture. It tackles muscle imbalances and helps with my breathing. It definitely improves my quality of life with the added bonus of keeping my weight down so a winner all round really.

Before I sign off I want to quickly mention trolls as they are becoming more commonplace. People can be so horrible on social media and I’ve often said they must lead incredibly sad lives to be so angry all of the time. LinkedIn has become the same, people are so rude to each other even though it’s supposed to be a professional platform. This is why I found this Ricky Gevais quote funny..

“A troll is someone who wants you to feel, for a few seconds, as miserable as they do for their entire existence”.

I know I harp on about it but why can’t people disagree politely? Why is someone wrong because they have a different opinion to you? We don’t need to share the same opinions as others but we do need to be respectful. You don’t have to disrespect and insult others to hold your own ground. If you do, it shows how shaky your own position is..

On that note, fill your life with experiences, pay 2 quid and take the bus 😊

Have an amazing day, until next time xxxxx

The A Word: 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.

I remember in the “olden days” Dr Hunter visiting 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.

Now, I certainly didn’t need Matt to visit me at home with his leather case and stethoscope (not to be misinterpreted 😊) and nor did I need to visit him in his surgery so our email exchange was a very efficient use of both our time. I’m also pleased to report that I’m nearly finished 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 a very apt description of my current demeanour.

Moving on, I’ve been questioning how I make decisions and how I come to conclusions about anything and everything really.

Why? I hear you ask.

Well, I’m keen to move with the times and not be one of those people who gets stuck in the past and who constantly moans 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 actually worse than bias because it’s generally “unconscious or cognitive bias” because 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” and I totally get 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 both big and small decisions. My brain has a natural tendency to take shortcuts in order not to be overwhelmed by too much information. Evaluating evidence requires a great deal 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 my 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.

Now, 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 to make, Jamie has tons of mental energy and does all the extensive research required for both of us. This means that I’m presented with expert facts that I wouldn’t have found out myself and between us we’ve mostly made good decisions.

So, when I realised I’m an avid user of unconscious bias I put a few bullet points to 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 growth mindset; rather than covering up mistakes, learn by them. I’m quite good at this one, 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 to enable us to see the world with more empathy.

Empathy is, without doubt, the medicine that 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 of what to say but yes, its 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 make it to being a published author, who knows, but I want to try. Jamie and I will also continue to take on consulting assignments, both in the charity and private sectors in an advisory and coaching capacity but only on a part time basis. 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 1990’s my jobs have been stressful, working long hours, but also 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’m going to share with you? Well, it’s quite simple really – “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 too.

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 20’s I moved to London and started working in the city, learning about capitalism, the complete opposite to 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 does make you seem like your intolerant of anyone’s else’s beliefs.

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

One of the biggest reasons a company fails is down to a leader who is intolerant of other people’s views and opinions. A CEO who surrounds himself with yes-people will ruin their own career as well as damaging the company. “Yes” people will always tell them what they want to hear and 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 into 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 having to compromise on our own 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 simply requires us to recognise that others are entitled to look at the world differently and that when they share their views with us, they can expect a fair hearing. 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 so bloody 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 its more thermals and jumpers for me next year. On the plus side, at least there’s no mosquitoes, 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.. xxxx

The A Word: Mind your Language!

We’re just back from visiting my parents in Cumbria. As an only child, I wanted my parents to move closer when their health started to deteriorate but they wanted to stay put, which I understand but I’m now into my 32^nd year of travelling up and down the UK motorway network for the 780 miles round trip.

My dad has Alzheimer’s. He was diagnosed over 10 years ago and its an incredibly disressing disease. If there is a positive to come out of it its that Dad doesn’t have a filter anymore. I sometimes don’t have a filter either but at least Dad has an excuse. I’ve got used to the fact that I lost the Dad I’d grown up with many years ago but he’s still extremely funny, especially without the filter. Dad loves photographs; not recent ones as he hasn’t a clue who he’s looking at as Alzheimer’s affects the short-term memory; but all the old photos still bring a smile to his face. When we arrived on this recent visit, there was a new photo on the mantelpiece, one that neither Jamie nor I recognised. It was a photo of a football team, probably from around the 1930’s. Picking up the photo and sharing it with Dad I said, “who’s this photo of Dad”. Looking very carefully at each of the twelve faces Dad eventually said, “I haven’t a clue, probably all the fancy men your Mum sees behind my back”! We all had a right giggle and thankfully Mum was out on the room. Its so important to laugh with Dad and not at him and, like with all my family, I’m incredibly defensive of him.

It’s the same when we take my parents out for dinner. It’s recommended you carry a small card explaining you’re with someone who has Alzheimer’s. This can be passed discretely to a staff member when you arrive but Mum doesn’t like to use it. This means we all end up holding our breath in case of any inappropriate comments. Dad’s also started to speak German to the bar staff in a funny Basil Fawlty type voice but as he only knows three words it does become a little repetitive. He also does a bit of shoplifting now and again so trips to the Co-Op are interesting. It’s mostly booze, chocolate or pepperoni pizza he’s interested in so he still gets his priorities right.

Jamie’s Dad suffered with Alzheimer’s as well. Fred is no longer with us but we shared some giggles with him too. He read the same chapter of Ian Botham’s autobiography 100’s of times and hid in the back garden shed when everyone was frantically looking for him. Eventually he had to go into a home and one of the nursing staff found his escape kit behind the toilet. It consisted of some string, a very sharp razor blade, money, a penknife and many other useful gadgets you would use for your getaway. We didn’t know Fred had a good left hand either until he decked one of the other male residents who was annoying him; Fred, like my dad, definitely didn’t have a filter either.

On a more serious note, its an incredibly distressing disease, perhaps more so for close relatives, especially the spouse. It’s the charity that Jamie and I always support and my daughter ran the London marathon for the Alzheimer’s society too. Medical advances are being made; experts are cautiously hopeful about developing Alzheimer’s treatments that can stop or significantly delay its progression. A growing understanding of how the disease disrupts the brain has led to potential Alzheimer’s treatments that short-circuit basic disease processes. Here’s hoping..

On a less serious note, the bloody mice came back. We were full of hope as they hadn’t materialised for nearly 2 weeks after Shane’s visit but our hope was short-lived. On the night they returned, they were incredibly loud! I’d no idea that mice could make so much racket. Shane came back and parked his large car complete with the pest control logo on the front drive. He dug a large trench in the muddy soil next to the white wall of our house, hopefully it will clean off. He found their home buried deep beneath the soil. Shane explained that mice burrows are often expertly camouflaged to keep predators out and their little underground houses feature multiple rooms to allow them to store food and nest comfortably. It spurred Jamie and I on to do the landscaping that had been waiting until the warmer weather arrived. We’ve moved about two tonnes of soil; laid weed membrane and we’re now waiting for our delivery of hardcore and pebbles to complete the project. Try getting out of that Mr Mouse!

Finally, this month I’m happy to report that after the little hitch following my FFS flippancy, me and my Rheumatologist are back on track, albeit by telephone. I’m wondering what stage Covid will need to get to before I meet him face to face again. I do see other people at the hospital when I go for my bloods and MRI scans but not my Rheumatologist, he still prefers chatting to me on my mobile; perhaps we’ll progress to FaceTime soon.

I don’t know about you but I’m finished with Covid, its gone onto my FFS list. I’ve had three jabs, a dose of Covid and now they tell me I can still get Omicron. In 2024, we’ll have had Foxtrot, Hotel, India and Juliet and we probably heading towards Romeo. You can just imagine the conversation

“Have you had Romeo or Juliet yet?”

“No, not yet, but I’ve had Viktor and Zulu”

On that note, I’d better go before I get into any more trouble,

Until next time..xxxxx

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