Living-with-autoimmune

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

Delightfully Diffifult

The A Word: “London Calling”

The A Word: Faking It

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

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

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

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

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

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

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

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

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

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

Until next time, keep safe and try Yoga xxxx

The A Word: When fairytales go wrong!

After a three-month break, I’m back writing my blog to help raise awareness of autoimmune disease and I’ve an update on my Ankylosing Spondylitis which I’ll talk about shortly. I also want to say a big thank you for all the wonderful messages, you’ve inspired me to continue to write.

Since July I’ve taken up yoga which I’ve been meaning to do for ages and I’m loving it. I can’t do classes due to the lockdown, but my daughter sent me a link to an online class and it’s amazing. I didn’t think online would work for me, but I’ve really surprised myself and I’m hoping it will help with my AS too. In addition to my normal working week, I’ve started to write my book and still do a daily workout so I’m reducing my blog to one a month to make sure I keep up with everything and don’t bore the pants of everyone.

So, here we go, let’s start with a rant about this bonkers world we find ourselves in. Not only are we intent on eliminating history, but my favourite Christmas song, Fairytale of New York, will no longer to be played in its original form. The wonderful lyrics have been the focus of much debate in recent years, as they include so called “derogatory” terms for gender and sexuality.

For goodness sake, it’s a dark song about two poor, probably doomed Irish immigrants in New York; they are drunkenly arguing, and the lyrics reflect that. It’s a masterpiece! It’s not about snow or sleigh rides or mistletoe or miracles, but lost youth and ruined dreams. A song in which Christmas is the problem. It’s also a great reminder of the lovely Kirsty McColl who sadly died in December 2000 in a tragic accident Mexico. I always find myself singing along loudly, especially to the bit below, where I inevitability jumble up all the words in a very loud, tuneless rendition 😊….

You were handsome
You were pretty
Queen of New York City
When the band finished playing
They howled out for more
Sinatra was swinging
All the drunks they were singing
We kissed on a corner
Then danced through the night

The boys of the NYPD choir
Were singing Galway Bay
And the bells were ringing out
For Christmas day

You’re a bum
You’re a punk
You’re an old slut on junk
Lying there almost dead on a drip in that bed
You scumbag, you maggot
You cheap lousy faggot
Happy Christmas your arse
I pray God it’s our last

Leading into the subject Christmas we’re so hoping to have our family together. There are 11 of us now and it will be our new grandson’s first Christmas where he will meet his cousins. I’m certainly hopeful life will start to return to some sort of normality in 2021 given the good news about the progress of the vaccinations. We’ve already booked our trip to South of France in July and I can’t wait to board that EasyJet flight 😊… I never thought I would miss an airline so much!

Another subject making the headlines this week is one I feel very strongly about – bullying. Bullying in the workplace has come to our attention as the Home Secretary, Priti Patel had to issue an apology as a recent report found that her behaviour towards staff did break the ministerial code. I dislike politics (especially at the moment), so I don’t want to make this a political blog, but I do think bullying needs to be addressed as it comes in lots of different forms.

Even now in 2020, it still remains taboo for women to speak out about woman-on-woman bullying at work. The Workplace Bullying Institute found women bully other women up to 80% of the time which I think is totally unacceptable. Women have fought and continue to fight for a seat at the table and to be seen as an equal to their male counterparts; we should be supporting each other big time not bringing our female colleagues down.

During my career I’ve mostly worked in male dominated environments and I’ve certainly had some spats 😊. Most of the women I’ve had the pleasure of working with have been kind, inspirational and, like me, often lacking in confidence. However, on the flip side, I’ve also felt more intimated by other women. For me it often came as a snide remark after a success. Perhaps I’d won a deal or been asked to take on more responsibility and, of course, it always had the desired effect – me losing my confidence! Personally, I think it’s so important that we make a conscious effort to be kind and thoughtful, but I do appreciate it’s not always easy.

Finally, this week I wanted to share an update on my AS. Working with my Rheumatologist we’re investigating some new symptoms that have materialised over the last few months. I’ve developed a tremor in both my hands along with some really odd muscle spasms in my fingers and nerve pains in my arms (and no, I haven’t started drinking copious amounts of spirits 😊). I had an MRI scan of the Cervical spine and whilst the Ankylosing Spondylitis is continuing to cause damage, there was no impingement to explain the nerve pain. There’s lots of simple explanations for these new visitors and I’m resisting the temptation to visit my good friend Dr Google for a self-diagnosis. I suspect it may take a while to get the answers as we go through a process of elimination and I just need to be patient and go with the flow. I’ll keep everyone updated throughout my journey.

My finale this week is a suggested change for the lyrics for Fairytale of New York. Not only is it funny, it also removes offence but maintains an 80’s kind of vibe!

You scumbag you maggot, you’ve taped over Taggert!

Bye for now and thank you for reading and sharing my story xx