Living-with-autoimmune

The A Word: Eat, Sleep, Relax, Repeat

“Eventually all the pieces fall into place. Until then laugh at the confusion, live for the moment and know that everything happens a reason”.

The first stage of our house move is complete, our “stuff” is in storage and we’re in Cornwall. It was very tiring, and I didn’t sleep particularly well for the days beforehand, so I was ready for a rest when we arrived at the cottage. They do say moving home is the 3^rd most taxing life event and I completely agree.

The stressful nature of this move has been somewhat exacerbated for me as I had lived in the house for longer than I had lived anywhere else. For the first 17 years of my life I lived in 7 different homes. From 17 to 36 I lived in 8 and these last 20 years have been my most stable (only 2 changes) and I have really enjoyed the constancy.

We’ve had an offer accepted on a property in Hampshire, closer to our families and with a mainline station to London. If all goes well, we anticipate being able to complete the second stage of our move in August so for the time being we will enjoy our time in the beautiful South West.

I do need to make a determined effort to relax as I’m rubbish at it. My Fitbit normally reports 13 out of 13 active hours per day which I know is crazy. I need to allocate more time to “limin”, a Caribbean word I love which means to hang out or to idly pass time. I first heard the word when we went on our honeymoon to St Lucia.

It’s a long story – we were due to go to Antigua, but the resort over-booked and we were asked to switch resorts to St Lucia. In return for the inconvenience, the holiday company upgraded our room to a beach front suite with a concierge service. The concierge service was completed wasted on Jamie and I as we’re so low maintenance. Our bar was stocked up every day and, as neither Jamie nor I drink spirits we gave them away to the locals we met on the beach. One chap, Daniel, used to come and sit with us daily sharing his wonderful stories of life growing up in Caribbean. We returned the favour by giving Daniel our rum and whatever else took his fancy from our bar which was then restocked in time for Daniel’s stories the following day. I loved listening to his tales of life in St Lucia and the word “limin” has stayed with ever since. I can never understand why people don’t interact more with locals on holiday, we’ve learnt so much about the places we visit which you will never learn from a tour operator.

The other gripe I have is the way people speak to restaurant or bar staff which I notice more when we’re away on holiday. Growing up I’ve had many waitress and bar jobs and most people are OK, but there’s always a few who talk down to you. I’ve always disliked any form of snobbery and I’m not a big fan of social class. The classic formulation of social class in Britain is to see us being divided into three classes: working, middle and upper class.

Simply put, working class is normally defined as those in manual work, often having lower levels of educational achievement. Middle class is generally categorised as individuals having higher levels of educational achievement. Typical jobs include everything from doctors and lawyers to people working in cerical roles. Upper class is described as being the social group that has the highest status in society, especially the aristocracy.

To me, everyone is the same no matter what their social class, colour, religion or wealth. I was born into and brought up in a working-class environment in the North West UK. My entrance into the world and the first 6 weeks of my life is a story for another day. I often feel more comfortable with people from my working-class upbringing however nowadays I can pretty much hold my own in any environment. During my career I did face some snobbery because of my lack of University education which was mostly from other women. I allowed it to worry me and it definitely affected my confidence. It would always come at a time when I had been particularly successful or taken on a new, more senior role. I could never understand it as I’ve always strived to help and support other women in my working life. That said, some of my best working relationships have also been with women and I can’t speak highly enough about some of the female colleagues I have had the pleasure to work with over the years.

So with that emotional brain dump done, the reason for writing my weekly blog is to raise awareness of autoimmune disease and this week I am asking for help. I’ve had Sinusitis, an inflammation of the lining of the nasal cavity and sinuses since February, yes! 5 months. I should have taken antibiotics (which I have done for previous bouts) but I am taking so much medication at the moment that I haven’t bothered.

Seasonal allergies or an upper respiratory tract infection can cause sinusitis and symptoms include headache, nasal obstruction, decreased sense of smell, facial pain, ear pain, toothache and fever, most of which I have. There are some autoimmine diseases that are associated with Sinusitis, but not any of the ones I have. If any of my readers have any information on their experience of chronic sinusitis I would love to hear your story, especially if you have any tips as it drives me mad. I’m hopeful that being in Cornwall and breathing in fresh air will help.

Finally, for this week, I can’t believe its July. I do hope it treats us better than March, April May and June. I’ve always love July; it’s the warmest month in the Northern Hemisphere on average, similar to January in the Southern Hemisphere. Sometimes the hot, long days of July are called the “dog days of summer” and it’s often called the Hay month when the grass dries out due to a lack of rain and can be made into hay. July’s birthstone, the ruby, is associated with contentment, love and passion, something I don’t see a lot of on my Twitter feed 😊

Until next time, stay safe and #stayalert…

The A Word: Living in a Material World

With a great hat comes great responsibility

This is my last blog from our current home; I’ll be sad to leave but I don’t get too emotional over these things and I’m ready to move on to the next phase of our life. Last week I said our house purchase had fallen through so our furniture is going into storage and we are heading off to Cornwall for the Summer. Our business is completely portable as all our applications are in the “cloud” and we’re currently interviewing via Zoom so all is good. I’ve also stopped worrying about my haircut, it doesn’t seem important in the overall scheme of things 😊.

This move has certainly made me think about “material possessions”. We’re living in a highly materialistic society and, to some extent, lockdown has taught us that the best things in life are generally not “things”.

During my lifetime, our society has grown more materialistic. Social media is partly responsible and there’s a lot of emphasis on the brand of clothes you wear or what car you’re driving. Some people look at others who live in luxury and think that they are living a happier life than theirs. This is the impression that society embeds in our heads and leads to many of us spending our time trying to earn more money rather than achieving happiness. In addition, our society doesn’t help as its constantly bombarding us to buy more because we live in a society that only functions if people continue to spend.

Whilst I don’t spend excessively, I do like nice clothes. I’m fortunate that I’ve weighed around 56 kilos since my early 20’s so clothes I bought years ago still fit and I do look after them. There’s also an argument that wanting more in life is a good way to motivate ourselves. I’ve worked hard since I was 18 often long hours in stressful roles as has my husband Jamie and it’s helped us to achieve a lifestyle that we are very content with. That said, there are always compromises and I do feel I could have been a better “Mum” if I hadn’t worked so hard. Finding a happy middle ground so you can have nice things but not too many seems like a good plan to me.

The opposite of materialism is minimalism, and this also sounds attractive 😊. This is someone who prioritises living with less to achieve freedom. Freedom can be defined in lots of ways, financial freedom, freedom from “stuff,” even freedom from a place. When you have a house full of new clothes or all the newest gadgets its more difficult to up stakes and start travelling. Stuff often weighs you down, psychologically, and geographically. If we can stop buying and stop holding onto all that stuff, think of the benefits to be had! Perhaps we have succeeded in life when all we really want is only what we really need.

Moving on, Jamie and I have saved so much money and eaten a healthier diet by not being able to eat out or go to the pub and I wanted to talk about the benefits of a healthy diet when living with autoimmune disease. I’m a great believer in cooking and eating good food as it has a very positive impact on our overall wellbeing.

One thing most people in the autoimmunity field agree on is that there’s a lack of evidence-based information about dietary treatments for autoimmune diseases. The best suggestions are that we follow a good diet and exercise regime to attain general health.

I’ve spoken previously about new evidence supporting the Microbiome and Autoimmunity and this is something I’m continuing to investigate. I’ve also talked about the importance of Vitamin D which I now take. The nutritional management of autoimmune disease usually emphasises foods to boost the immune system which I make sure I include. Autoimmune diseases are painful and disruptive to everyday life. At their core, they have one thing in common: an out-of-control immune response, linked with systemic inflammation and the right diet can help ease pain. In general, I avoid sugar and focus on fruits, vegetables, healthy fats, fish and organic meat.

My stepdaughter Ellie is a fabulous example of what a good diet can achieve. Ellie has IBS and Fibromyalgia and I also suspect an undiagnosed autoimmune disease, possibly Lupus. Over the years, Ellie has had to cut out many food groups as they made her feel so ill. It has taken her a long time to find the right food combinations to suit her and she now eats a pescatarian and low fodmap diet. I cannot emphasise enough how well Ellie looks and feels; it has made such a difference to every aspect of her life. She has started an Instagram account (ellie_sw15) diarising her journey to a healthier and fitter lifestyle, including all the recipes and photos of the wonderful food she makes. Following Ellie’s experience, I’ve seen first-hand how a good nutritional diet can make such a difference to the way we feel both physically and mentally.

Talking of healthy food, I want to end this week’s blog chatting about fish and chips. Freshly cooked, piping hot fish and chips, smothered in salt and vinegar, wrapped in newspaper, and eaten outdoors by the sea is just perfect.

The potato is thought to have been brought to England from the New World in the 17th century by Sir Walter Raleigh although it’s believed that the French invented the fried potato chip. Both Lancashire and London claim to being the first to invent this famous meal – chips were a cheap, staple food of the industrial north whilst fried fish was introduced in London’s East End.

So are fish and chips any good for us, nutritionally? Fish and chips are a valuable source of protein, fibre, iron, and vitamins, providing a third of the recommended daily allowance of vitamins for men and nearly half for women. Apparently, there are now around 8,500 fish and chip shops across the UK, that’s 8 for every 1 McDonald’s, making fish and chips the Brits favourite take-away.

This time next week I’ll be eating my fish and chips by the sea from the best fish and chip shop in the UK and I can’t wait. I also can’t wait to go to the pub on 4^th July and Jamie and I will be first in the queue 😊. I know, such style, fish and chips and a pint of lager and I’m a very happy girl. You can take girl out of the North but you can’t take the North out of the girl!

Cheers, Prost, Santé, Yamas, Cin cin, Salud

Until next week, stay safe and #StayAlert xxxx

The A Word: Self Promotion or Bragging?

How a hat makes you feel is what a hat is all about

Hats are my new “go to” accessory. Until recently I thought they were only worn at weddings and Ascot, but they are proving very useful due to my unplanned “bouffant” hairstyle. I was beyond excited when I bumped into my hairdresser in the high street last week; they are hopeful of a 4^th July opening and I’m on the waiting list. However, there’s a slight problem, we’re moving on the 2^nd and more on that stressful event later.

As our nation starts to return work it got me thinking about the subject of self-promotion, a topic we covered regularly during my sales training. Self-promotion is attempting to present yourself to others as an accomplished, capable, smart, and skilled person. It can be done through face-to-face conversation, on blogs or social media platforms, or even through our mannerisms, posture, speech, or dress.

Self-promotion is necessary for anyone running a business. It’s important when interviewing for a new job, especially when competing with say 20 other applicants or even when vying for promotion. In my current job, I interview people every day, some self-promote well and others don’t. If someone has great skills, I try to help them with their self-promotion techniques as some people just don’t feel comfortable with it. That said, it’s a fine balance as a boastful manner is unattractive and favourable impressions can also be accomplished by modesty or even self-denigration.

So, what’s the solution? How do you ensure your achievements and your unique selling points don’t get lost while avoiding annoying everyone with your bragging? During sales training we were reminded of F. Scott Fitzgerald’s quote:

“You don’t talk because you want to say something, you talk because you have something to say.”

People generally don’t value confidence and self-promotion unless it’s accompanied by competence. I follow a number of people on Instagram who do self-promotion well but its combined with competence and knowledge in their chosen field so, as a follower, you receive value.

Writing my blog to raise awareness of autoimmune disease has been a new venture for me and, to start with, I loved writing it, but felt uncomfortable promoting it even though sales and marketing has always been a part of my career. I’ve got better over time, mostly due all the nice comments I receive from people who enjoy reading it.

Research also concludes that gender has a strong influence in how much a person pushes themselves forward. In most cultures there tends to be a view that confidence and self-promotion are more desirable male characteristics, whilst modesty and group-affiliation are more feminine ones 😊.

Parking self-promotion for now, I want to talk about driving and the affect my ankylosing spondylitis has had on my ability to drive. As AS attacks the spine it causes pain and swelling between the vertebrae, as well as in the joints between the spine and pelvis. I also have pain in my mid-back and neck which often gets worse when I’m in one position for an extended period of time, including sitting in a car, or on an airplane. Even before my diagnosis my range of motion was often affected, making it difficult to check to the side and behind, affecting my driving.

If I’m in pain now, I tend to avoid driving long distances which is an inconvenience. I also had a car accident around the same time as my diagnosis. I was hit by a lorry who failed to see me overtaking him when he pulled out. Whilst I was uninjured, the car and the motorway crash barriers were written-off and I was very lucky. It knocked my confidence and I haven’t driven as much as I would like since those two events. This is something I intend to work on over the course of the next year as my driving skills have definitely deteriorated!

And so, to my finale, our house move! OMG, it’s so stressful. We’ve lived in our family house for 16 years and moving seemed like great idea until we started the process. I’ve read so many stories about how moving to a new house represents a transition in life and this move is certainly part of our life plan.

However, moving home is also about change and unfamiliarity and for many people (including me) it can cause stress and anxiety. I adore familiarity, routine, and order, they are my best friends. When you’re moving, you have none of these, hence the challenge!

We’re also downsizing, and Jamie and I have been working towards this move for over a year. Not only do we have the 16 years of our life in this house, we also have our previous 40 years packed away in cupboards too. This house has A LOT OF STORAGE. We’ve been quite ruthless assessing whether our “stuff” is still useful. If not, we reasoned that it still wouldn’t be useful packed away in a box in our new house, so it’s gone. We’ve exchanged contracts on our house and move out on 2^nd July, hence my distress at my hairdresser opening on 4^th!

To add to this distress, we’ve pulled out of our house purchase due to some complications with boundary lines.

As Joel Osteen said, the life in front of you is so much more important than the life behind you so fingers crossed for the next chapter

Until next time, keep safe. #StayAlert xxx

The A Word: Is Happiness Overrated?

2020 has certainly packed a punch so far and there are mixed opinions on how quickly we should return to normal. I can see both sides of the argument and protecting life should always take priority. Whilst the furlough scheme has protected some, many other people have suffered because of the Covid-19 Pandemic, so I’m in favour of the tentative approach to open up our Country.

Interestingly YouGov’s mood tracker picked up many changes in the nation’s emotional state during lockdown. In March, the nation’s mood was unaffected by the virus. Since that point, things have taken a turn for the worse.

The tracker was launched in July last year and the most common emotion in Britain was “happy”, with an average of 50%. In early March before lockdown 50% of Britons said this had been how they had felt. Since then, however, this figure has plummeted to just 26%. In fact, happiness is now only the sixth most commonly cited emotion, behind negative emotions such as stress, frustration and feeling scared and unsettled. Boredom was also up and feeling content was down.

It got me thinking about how much emphasis is placed on happiness which is generally defined as the experience of frequent positive thoughts, such as joy, elation, and delight. However, the pursuit of happiness can be expensive and time-consuming. Money can buy us temporary happiness but after depleting our funds, we always come back ‘down’ to our natural state.

Contentment is different to happiness. Contentment is generally defined as a longer lasting, but a deeper feeling of satisfaction and gratitude. Being content is a state, whereas happiness is a moment. A content person does not need to always be happy, as long as there aren’t too many unhappy moments.

If we’re content with ourselves, we’ll have more time and energy to live and experience life, in both its delightful and wonderful moments. It doesn’t mean we can’t have goals for a better or different lifestyle, but it’s important to find acceptance and contentment no matter what your situation. Even if you have nothing, you can enjoy a sunrise or sunset. During lockdown I’ve appreciated different things such as the birdsong on our walks, the beauty of our countryside, eating some of the wonderful bread and cakes baked by my husband and, except for some of my ungrateful days, I mostly felt content. In my opinion, feeling content is more important than feeling happy.

That said, one of the biggest influencing factors to feeling content is our health, both physical and mental. Living with autoimmune disease means you do have bad days but knowing what is wrong with you and being in control of your illness certainly helps. The problem with autoimmune disease is that it is often difficult to diagnose so you may be living with health issues but every time you visit a GP or hospital, there is no obvious reason for your distress which contributes to mental health too.

I lived with chronic pain and other unpleasant symptoms for 23 years until I finally received my diagnosis for ankylosing spondylitis. I first experienced Iritis, an extremely painful inflammation of the eye which is linked to AS in 1992, but wasn’t diagnosed until 2015, by which time my sacroiliac joints had already fused.

If you experience fatigue, aching muscles, numbness or tingling in hands and feet, skin rashes or chronic pain, its important to continue your pursuit to find an answer. There are other symptoms which are often dismissed such as trouble concentrating or low-grade fever. It’s never just one factor. Diagnosis can also be difficult because these symptoms can come from other common conditions.

There are over 80 autoimmune conditions that scientists know about all of which follow the same pattern when your immune system mistakenly attacks your own body. Normally, the immune system can tell the difference between foreign cells and your own cells. In an autoimmune disease, the immune system mistakes part of your body, like your joints or skin, as foreign. It releases proteins called autoantibodies that attack healthy cells, so diagnosis is really important.

Moving on, the term Force Majeure intrigued me when I was selling software and negotiating the contracts. Force Majeure is a common contractual clause which can free parties of liability in the event of specified circumstances beyond the control of the parties. I always wondered what would trigger it as it never came into play in any of the contracts I was involved in. It covers events such as earthquakes, hurricanes, terrorism, war, and depending on how a contract is worded, they also cover pandemics.

The Covid-19 pandemic and the social lockdowns in both the UK and internationally have seen a rapid increase in queries relating to force majeure including reports of refused refunds from holiday companies and airlines because of a force majeure clause? I guess it’s keeping the lawyers busy and I’ll will be interested to follow the outcome.

My finale this week is about Twitter as it has a reputation of being a very dark place where the ugliest voices are often the loudest. For me, Twitter is great as I get more click throughs to my blog from Twitter than from any other social media platform by a long way. I saw a funny quote during lockdown which resonated and pretty much summed Twitter up.

“Twitter is a terrible platform, but, on the other hand it does provide 98% of my entertainment for the day” 😊

Until next time, stay safe, #StayAlert xxx

The A Word: What is Normal?

Normality is a paved road, its comfortable to walk but no flowers grow on it.

As we tentatively begin our return to normal it feels wonderful to me and this week has been much better than last, especially seeing our family. I found the social distancing challenging as, in our old world I would have dished out hugs and kisses galore, but we all managed and were thankful for being able to visit. I’ve also had a costa coffee, shopped for furniture, and booked a visit to RHS Wisley who have opened their gardens, so all is good.

However, the meme above made me think about the changes many of us made to our behaviour during lockdown, some of which I hope will stick around.

Readers of my blog will know that walking is a big part of my life as the exercise helps with my Ankylosing Spondylitis. Normally, whether walking in our home County of Surrey or other parts of the UK we see very few families out enjoying the fresh air, even in school holidays. However, the lockdown seems to have changed people’s behaviour. It makes me smile to see families out walking, cycling, and swimming in the rivers like I did growing up. I’ve seen families taking picnics together, exercising together and, overall, living a much healthier, lower cost lifestyle. The amazing weather has certainly helped but I’m so hoping this behaviour doesn’t change when the material world comes back to distract us.

I accept that people have had more time to appreciate the countryside, working from home has improved work/life balance. Whilst I like the idea of a better work/life balance, in a previous blog I discussed the disadvantages of working from home full time. This week I want to talk about business travel as I guess the closest you can get to a business trip now is taking your laptop from the home office to the kitchen. Business travel has completely ground to a halt, and no one is sure when or if it will be back.

Companies are using video conferencing facilities such as Zoom or BlueJeans and it works well. I’ve been on a number of Zoom calls myself, both personal and business and used this technology long before the lockdown started. Interestingly I’ve also learnt about video voicemail options like Loom, providing the expressiveness of video with the convenience of messaging. All of which is great news for the environment, especially as today is World Environment Day 2020, but is technology providing a viable replacement to face to face meetings? Is the human connection important enough for business trips to resume?

According to a Harvard Business Review, a face-to-face meeting is 34 times more successful than written communication which makes complete sense to me. Their research concluded that a video call comes closer, but it’s still not as effective. In my opinion, the business trip will win in the end because people still want human interaction, it’s a business style that I don’t think will change. That said, if Covid-19 has taught us anything, every decision we make needs to be considered in light of the new way of working available to us.

Personally, I’ve had some of my best adventures on business trips, many of my stories I’ll save for another day. I often travelled alone and, as I didn’t want to spend nights away from home I would try and keep my European trips to one day. I would take the earliest flight out of Gatwick with a late return. Early and late flights coupled with a full day of client meetings was a tough gig. However, seeing many European cities and experiencing life outside the UK was rewarding.

On a rare overnight trip to Frankfurt, I had arrived late in the evening in preparation for an 8am meeting the following morning. I would usually take room service, but fancied venturing out for dinner and armed with my book I set off from my hotel to find a nice restaurant. After walking for about 5 minutes, a police car pulled up alongside and asked where I was headed. Dressed in my smart business suit and high heels I advised him that I was off out for dinner. “Not that way” he kindly informed me smiling, you’re heading to Bahnhofsviertel, Frankfurt’s red–light district 😊. I’ve never been good at reading street maps!

Moving swiftly on, last week I said that my Ankylosing Spondylitis had been particularly bad. Its still painful now and this week my gym workouts have focused on “core strength”.

Core exercises train the muscles in your pelvis, lower back, hips, and abdomen. This leads to better balance and stability and most physical activities depend on stable core muscles. The extensive walking we do around the coastal paths and in the hills depends on having a strong core too thereby avoiding losing balance and falling. Our core muscles play a huge role in everyday activities, from getting out of bed to bending over but, most importantly, for me, they help with posture and keep me standing up straight.

Our core muscles are the base of support for our entire body. They completely surround and support the spine and pelvis and connect the upper body and lower body, effectively transferring forces from one to the other. Sometimes, like now, I hurt too much to do my full core workout and I have to limit specific areas of my regime, but I have other gentler exercises that take over when this is the case. I’m starting to feel better and my pain level is reducing; thank you so much for all the lovely messages I received last week after writing about my flare-up. Its rare for me to admit pain as I don’t handle sympathy well, but the messages were great 😊…

Lastly, I want to talk about the horrific death of George Floyd. Like me, many people will have struggled to watch the shocking video of his death. Racism is such a huge issue and too big a challenge to address by one individual person. However, we need action rather than words and collectively we can make a difference. If every parent and every grandparent took the advice of Nelson Mandela and applied it to their family, it would be a start.

“No one is born hating another person because of the colour of his skin, or his background, or his religion. People must learn to hate, and if they can learn to hate, they can be taught to love, for love comes more naturally to the human heart than its opposite.”

Nelson Mandela, Long Walk to Freedom

We must all take responsibility to educate our children and grandchildren by following the actions and words in this great man.

Until next time, stay safe and #StayAlert

The A Word: Easing Lockdown – Week 3

OK, this hasn’t been my best week but before I go into detail about why, I wanted to talk about “curiosity” and then all will become clear. We all know the saying “curiosity killed the cat” but personally, I don’t think curiosity is cat specific.

Curiosity is the desire to learn about anything and some people are naturally more curious than others. My husband, Jamie, loves to learn and is curious about everything. I, on the other hand am only curious about things that interest or excite me. I would like to be more curious as it certainly broadens your knowledge base, but I’m just not made that way. Some people have a lifelong interest in learning, simply for the sake of learning which I think is wonderful.

In my opinion, curiosity is vital in the workplace too, especially if you want to advance your career. Curious people ask great questions that start with “how,” “what,” “when,” “where” and “why,” They are always seeking new knowledge by engaging in conversations and broadening their network. When asked a question, they aren’t afraid to admit when they don’t have an answer. In my experience, they have the ability to shelve a sense of being right in favour of being open to the insights and opinions of others.

Whilst it wasn’t a childhood ambition of mine to work in technology sales, I was passionate and excited about selling and therefore always eager to seek out new information to improve my skills. For me, being passionate about something helps me to be curious and I would analyse every deal (a win or a loss) to see what I could glean from it and I still do today. I loved talking to and listening to our subject matter experts and Consultants to understand more about the solutions I was selling. I would read books and attend training to learn about the financial markets and how they worked so I could be knowledgeable in front of my clients too. Somehow, I need to extend that curiosity into other areas that I am not so passionate about (yet!).

The reason for mentioning curiosity is that it occurred to me during lockdown that being curious is a superb trait to have. Some people have taken the opportunity to learn a new language, study a subject they knew nothing about, learnt to paint, taken up a new hobby or resurrected an old one. I, on the other hand, haven’t. I’ve managed to do some of the things I enjoy, like walking and exercise. However, because we are moving home, other things I take pleasure from such as gardening or house projects didn’t seem appropriate, especially spending money unnecessarily on our spring and summer planting. I did buy a few jigsaws and also taught myself some dance moves, but I haven’t achieved anything else. And that’s the clue to the reason I had a bad week.

My ankylosing spondylitis has been very painful in the last 10 days or so and I normally use a distraction technique to help me through pain and flareups. As I write my blog to raise awareness of autoimmune disease, I thought it might be helpful to discuss this subject in more detail. I am on a maximum dose of medication and my usual pain management strategy using “distraction” has been completely ineffective.

I have always used this strategy to redirect my mind off pain. Being able to distract my mind away from the pain by immersing myself in other things has been an invaluable self-management tool. Work has always been a great distraction but it’s very quiet at the moment. Our normal life is so full, I don’t have time to feel sorry for myself. Looking forward to and visiting family and grandchildren, going to football, meeting friends, being in the pub or out for dinner, cricket at the Oval, our beloved Cornwall, our travel, gardening and my photography have filled up our days.

When you’re living with chronic pain, every pain management strategy helps and sometimes you need it more than others. This week, I’ve had nothing to distract myself with, so thinking about my pain was top of my “to do” list and it wears you down. I was unable to read as my mind wasn’t in the right place and I also managed to smash up a jigsaw I was half-way through out of frustration of not being able to see anyone.

So that’s why I believe curiosity isn’t just for cats as it can help with every aspect of life. Curiosity can be the most powerful thing you own and one of the greatest cures for boredom.

On a happier note, the one thing that has helped me is music. I listen to music when working out in our homemade gym (loudly). A few years ago, Jamie downloaded an app called Shazam which will identify any song in seconds. Over the years and during our travels we’ve heard tracks we absolutely love, identified them using Shazam and Jamie compiled a long playlist of all our favourites which I’ve blasted out every day. Because the songs represent so many happy memories, they really lift my mood.

There are some tracks that stand out like when we were sitting in a beach cafe watching the surf in Yallingup, Western Australia listening to some superb chill out tracks. The late afternoon session in the beach club we go to in France always makes me smile, as do the Eurodance mixes by the French DJ’s in the late-night bars and, of course, the brilliant music played in our favourite place, the Taphouse in St Agnes, Cornwall. I love music and it helps me work up a great sweat too 😊.

If you want to keep your brain engaged, listening to or playing music is a wonderful tool. It provides a total brain workout. Research has shown that listening to music can reduce anxiety, blood pressure, and pain as well as improve sleep quality, mood, mental alertness, and memory.

One track that stood out during my workout this morning was “Five More Hours”, Chris Brown, Deorro and I sang out loudly when we got to the best bit.

This right here is my type of party
Five more hours, we’re just getting started

This will be us when COVID-19 has (hopefully) gone away, one big party that will last all through to Summer of 2021, mixed with a bit of work of course 😊.

Until next time, keep safe and #StayAlert

The A Word: Easing Lockdown – Week 2

The weather has been amazing this week in London and the South of England; I love the Spring and Summer so much. We’re in the 2^nd week of easing the lockdown and we’re definitely making progress as a Country. Jamie and I are very sociable people and our calendar is always full at this time of year so it will be nice to see some of it reappear, especially seeing our family. I’ll certainly miss our annual holiday to France with a group of our friends which was scheduled for July, but we’ll make up for it next year. On a positive note, Summer in England is wonderful so hopefully we can spend some time in Cornwall when its safe to do so.

One element of the lockdown that I find somewhat concerning is the number of companies who are contemplating allowing their employees to work from home permanently. I understand the pro’s for working from home, especially for people with a family where work/life balance is very important and those who feel their commuting years are done. However, we shouldn’t forget the importance of social interaction in the workplace. Spending 8 hours of your day with little to no human interaction surely must make you feel isolated? OK, so you can look at and speak to colleagues on your screen, but it’s not the same.

In the office you’re surrounded by people with different thought processes than you, different humour, and it’s easier to be innovative and come up with brilliant ideas! Through teamwork and bouncing ideas off colleagues I was undoubtedly more successful, possibly because their ideas were much better than mine but, aside from that, we had so much fun.

I have superb memories from my City life and still have a laugh when I go there now. I’ve met some wonderful people and have lots of stories to share with our grandchildren, perhaps for when they are a bit older 😊. By working full time from home, you’ll miss out on these friendships, which in the end make work life much more enjoyable! I commuted on the 7.09am from Leatherhead and returned mostly on the 6.24pm from London Waterloo, a regular 12-hour day, sometimes more. Whilst I wouldn’t advocate this as the “norm”, splitting time between home working and being in the office seems a much better solution to me.

I’ve no idea why young people starting out in their career without family commitments would want to be at home all day. I appreciate it’s not always fun in the workplace, but it teaches you some valuable life lessons which I don’t believe you’ll learn from talking to team members on a screen. Being able to communicate well and deal with confrontation are important skills which disappear with lack of social interaction. In the workplace you’re exposed to people outside your own comfort zone and I’ve had some right old “barneys” in my time 😊, all resolved over a glass of wine or two.

Moving on, I write my blog to raise awareness of autoimmune diseases. I have Ankylosing Spondylitis, an inflammatory disease that causes the bones in my spine to fuse. This fusing makes the spine less flexible and can result in a hunched-forward posture, a good example would be the “hunchback of Notre dame”. If ribs are affected, it can be difficult to breathe deeply. It also affects some of my other joints too.

Living with AS is often challenging, but I do find the warmer weather helps. I’m not sure why as there’s no medical reason, but I guess the warmth increases blood flow which helps ease pain. When you’re living with chronic pain every day, exercise often seem impossible, but leading a sedentary lifestyle really aggravates my symptoms and this week I want to talk about the benefits of stretching.

When I was first diagnosed, some of my bones had already fused so high impact exercise was discouraged. Having AS means I’m at greater risk of having thinner bones (osteoporosis). During high impact exercise and contact sport you are at risk of hard knocks and blows that may also cause a bone to break. Also, with bone fusion in the spine I could also be at risk of breaking one of the bones in my vertebrae which I definitely don’t want to risk.

Low-impact activities are much easier on my joints so people with AS are encouraged to do walking, yoga, Pilates, weight training and swimming. I do add in cardio when at the gym, but only rowing or the cross trainer.

I find stretching helps me enormously. Before lockdown I’d forgotten how important stretching was. We would go to the gym 4 days a week so by the time I’d done legs, arms, core and cardio, I didn’t have a day left for stretching. However, with more time on my hands I have reintroduced it and it’s really making a difference.

Stretching is not just effective for my AS, but for other autoimmune conditions, such as arthritis and reactive arthritis. It definitely helps to reduce my lower back pain and if I’m struggling with my mobility, it really improves after stretching. It’s also a safe option for people who want to try physical activity but don’t know where to start. As well as easing pain stretching improves posture, tackles muscle imbalances, make it easier to breathe, and enhances overall quality of life so even if you don’t suffer with autoimmune disease its good practice.

Finally, I follow a wonderful account on Twitter – A.A Milne. For those who read my blog from afar, A. A Milne (Alan Alexander Milne ) was an English author who created a fictional teddy bear called Winnie-the-Pooh. The Pooh stories have been translated into many languages and I know they’re popular in America as Winnie-the-Pooh was mentioned in “Mad Men” a series we’re watching on Netflix.

A.A. Milne named the character Winnie-the-Pooh after a teddy bear owned by his son, Christopher Robin Milne, on whom the character Christopher Robin was based. Other characters in the book include Piglet, Eeyore, Kanga, Roo, and Tigger. This Twitter account celebrates words written or inspired by this great Author and every day it makes me smile, including this wonderful short extract below.

Piglet gave Pooh a nudge, and Pooh, who felt more and more that he was somewhere else, got up slowly and began to look for himself.

“Pooh,” said Piglet reproachfully, “haven’t you been listening?”

“I listened, but I had a small piece of fluff in my ear”.

I get lots of fluff in my ears these days, especially when listening to the media 😊.

Keep safe and #StayAlert, until next time xxxx

The A Word: Easing Lockdown – Week 1

The easing of lockdown has started but it hasn’t made any difference to our daily life, we still can’t see our family which is frustrating. Whilst I accept the strategy and understand why this is the case, it did make me smile when the gradual return to school was announced; the youngest children returning first who are notoriously good at not touching things they shouldn’t and maintaining personal space 😊.

Jamie and I continue to do our gym workouts and long walks and whilst we can now do unlimited exercise, I already feel like a fitness freak so doing more exercise isn’t on my agenda. I do, however, like to dress up once in a while; when you wear the same “comfort” clothes every day you adopt the characteristics of your clothes whereas putting on a dress or a different pair of jeans and a little makeup can make you feel more positive.

Dressing up is important to me from a work perspective too. I’ve always been a very nervous presenter but presenting to an audience has been a necessary part of my job. I gave internal company presentations on our performance in sales as well as external presentations to clients when we were bidding for business. I often felt ill beforehand and my legs would shake, so on those presentation days I would make an extra effort to “power” dress and I’m sure it helped me psychologically. I still present today although not as much and I still dress up as a means of boosting confidence. Currently, in Covid world, I try to intersperse the comfort days with clothes to boost energy and mood levels which certainly fluctuate during these difficult times.

I write my blog to raise awareness of autoimmune disease and I’ve placed a lot of emphasis on how we can help ourselves to live our best life. I get a lot of questions every week on this subject from readers who want to understand more about my self-help daily regime and I’m really pleased to hear that my blogs are helpful.

People like me who suffer with autoimmune disease must deal with chronic pain, chronic fatigue, and the many other side effects daily. To add to the chaos there’s the additional problem of stress which can induce flare ups making things worse. Autoimmune disease can complicate everything, even trying to motivate ourselves to eat well and exercise. There are many barriers to self-help too, including accessibility of exercise equipment, cost, and time so it’s often easier to talk about self-help than to put it into practice.

Last week we discussed the concept of “clean eating” but as I pointed out, it does take a huge amount of time and effort to adopt this way of life. This week I want to discuss the importance of Vitamin D which doesn’t have the same cost or time barriers.

Known as the sunshine vitamin, Vitamin D is produced by the body in response to our skin being exposed to sunlight. It’s one of the few nutrients we can’t get enough of from food. Our bodies are designed to make Vitamin D from sunlight, yet modern life has made that difficult. The result is a worldwide deficiency in Vitamin D, even in sunny locations.

As we know, Vitamin D is essential for strong bones and deficiency has traditionally been associated with rickets, a disease in which the bone tissue doesn’t properly mineralise, leading to soft bones and skeletal deformities. But increasingly researchers have been focusing on the consequences of Vitamin D deficiency in other areas and have found an alarming number of health issues outside of its role with rickets. These include skeletal diseases like osteoporosis, certain cancers, cardiovascular disease, autoimmune diseases, and psychological disorders.

I know from my regular blood tests that my Vitamin D levels are too low, and research is concluding that people with ankylosing spondylitis or other chronic inflammatory diseases do have lower Vitamin D levels than the normal population. I suspect my avoidance of the sun exacerbates my deficiently too. Don’t get me wrong, I absolutely love the sun, but in order to protect my skin, I wear a factor 50 sun cream on my face every day (even on rainy days and in Winter). I don’t expose my skin to the sun during the high sun index hours of 10am to 4pm and even on holiday I love to sit on the beach but under the shade of my umbrella. I use an umbrella when sitting in the garden and I wear a cap or hat and sunglasses when out walking to protect my face. I have taken this approach since my late 30’s when I saw first-hand the damage the sun can do to your skin. I am also aware of the risk from skin cancer which is another good reason to protect our skin from UV radiation.

So, what can we do about this Vitamin D deficiency? Apparently only 20% of our vitamin D is meant to come from our diet with the remaining 80% provided by our skin from UV-B exposure to the sun. A simple blood test can determine Vitamin D levels and the amount of Vitamin D that is needed to correct any deficiency will depend on the severity of the deficiency and your individual medical conditions. The time of year will also impact your needs. For example, if you are on the low end of normal blood levels and heading in to the winter months you would need a bit more than if you were heading in to the summer months if you like to spend time out in the sun.

I’m definitely going to investigate Vitamin D supplements to see if they make a difference to my levels of Vitamin D before my next blood test. I’ll keep my readers informed of any improvements in my well-being too. My understanding is that supplements should be taken with a meal that contains fat. Studies have shown that when taken on an empty stomach versus with a meal containing fat, there was an average of 32% more vitamin D absorption in the fat-containing meal.

On a final note, the new government message #StayAlert resonated with me as the “alert” message was a big part of my sales training. It was good remind myself of the definitions of “alert”

Adjective – quick to notice any unusual and potentially dangerous, vigilant
Noun – the state of being watchful for possible danger.
Verb – warn (someone) of a danger or a problem.

Working in sales, we needed to be “alert” every day. In order to win business, it was important to be at least two moves ahead of the client and the competition. By being alert and quick to notice any unusual circumstances or changes in our clients buying behaviour we could identify challenges or problems and act upon them before they became “show-stoppers”. Selling complex software solutions worth millions of pounds into banks required you to think about every possible scenario and act on it before anyone else.

A good example of this is a racing car driver. They know that the fastest path through a tight turn is to begin the turn just a moment earlier than most people would think to do so. Those fractional advantages make all the difference both on the racetrack and in our everyday life.

Every move we make, every step we take, we should think about the outcome.

Until next time, keep safe and keep alert xxx

The A Word: Lockdown – Week 7

It’s sad that we’ve had to cancel the majority of the VE Day 75 community celebrations due to take place this weekend although it’s the correct decision so people can stay safe.

The VE Celebration organisers are encouraging us to take part in the ‘Nation’s Toast to the Heroes of WW2’ at 3pm this Friday 8th May, from the safety of our own homes. Dame Joan Collins will be leading the ‘Toast” from the balcony of her apartment in London. I certainly agree with Dame Joan when she said: “We must never forget the selflessness of all those who sacrificed so much to keep us free during WW II. It’s vital we continue to recognise the importance of not only the brave veterans who fought on the front lines but also the courageous women who put their lives in the line for this nation’s struggle.

Jamie and I will be raising our glasses at 3pm and we’ll also be joining in a moment of reflection and remembrance at 11am for a Two Minute Silence

We had planned to spend this Bank Holiday weekend in Cornwall celebrating with our Cornish friends. I don’t know about you, but I’m so missing our “normal life”, and I’ve definitely suffered from lockdown fatigue these last few days. I will be ready to hear the announcements about our gradual return to the “new normal”, a life which I image will be quite different from our previous normality.

On a positive note, I am certainly a little fitter than I was before lockdown. By doing our home workouts and walking 20,000 plus steps a day, I’ve lost 1.7 kilos and our diet has been incredibly healthy which leads me onto the subject of “clean eating”.

Readers of my blog will know that I suffer with 3 autoimmune diseases and I write my blog to help raise awareness of these debilitating conditions.

Most autoimmune diseases have very long-term effects on health, placing a large burden on the NHS. Current treatment aims to minimise symptoms but not cure them. It’s imperative that immunological research receives adequate investment in order to better understand these conditions so that we can open up new therapeutic strategies. Currently inflammatory and immune research only makes up a small proportion of publicly funded scientific research in the UK, but we are still making good progress.

Whilst genetic predisposition makes individuals more likely to develop certain autoimmune diseases, there is a lot of theory that the correct diet can reduce inflammation and other symptoms of autoimmune conditions. Because autoimmune disease causes the immune system to attack and damage healthy tissues or organs by mistake, anything that can help reduce this inflammation must be beneficial.

There seems to me to be two options, the first option I mostly abide by today and I’m studying the second option in order to digest what this would mean to my life.

The one I abide by is to eat a healthy diet to help reduce inflammation. I eat very little processed food, hardly any sugar, cook all our meals from scratch, I limit alcohol to the recommended units per week, I don’t drink spirits, I limit red meat, and I focus on eating copious amounts of fruits, vegetables, healthy fats and fish. This works well for my fitness, my weight, my mind, and my overall health.

However, the second option is a more extreme version of the first. An up-and-coming area of human health research focuses on the impact of balancing the gut microbiota. Disruption of the intestinal ecosystem has been linked with many diseases, including autoimmune disorders, thus information is starting to materialise to help us digest what this would mean to our diet.

I am in the process of reading a book by Dr Josh Axe called “Eat Dirt”. It’s quite complex but basically talks about our gut being the gateway to health. Our gut houses 80% of our immune system and without a healthy gut it is nearly impossible to have a healthy immune system. Whilst my current diet is good, it still includes alcohol, coffee, and many other add-ons which I didn’t even know were included in the processed foods category like salad dressing and mayonnaise. A lot of these components make cooking and eating out much easier. I also adopt an 80/20 rule to my diet and there are times when I enjoy “junk food” and more alcohol than recommended but under the second option that 20% of bad behaviour would have to go. Those who know me will smile as they’ll understand how difficult it would be for me to be “good” 100% of the time 😊.

There is, however, another opinion that it’s all hype; that the many books, websites, and blogs offering advice on how to eat to prevent or treat autoimmune conditions is not based on solid scientific evidence. I don’t have the answer, but I guess if we don’t try new ways to help ourselves, we won’t find out if its beneficial or not. Watch this space, I’ll keep you updated on my decision.

On a final note I wanted to share a conversation between me and my grandson

Me: how do you tell the time?

Grandson: I look at the clock

Me: When I was your age my Mum used to phone a speaking clock to make sure the time on our clocks was accurate

Grandson: Nana, you’re crazy!

Despite few young people knowing it exists, apparently the speaking clock still gets more than 30 million calls a year. I had no idea that you could still call it but apparently you can by dialling 123 and it costs about 30p. I love sharing funny things from my childhood with our grandchildren just like my nana and grandad used to do with me.

Let’s raise our glasses to my Nan and Grandad’s generation and pay tribute to the many millions here in the UK and abroad that gave so much to ensure we all enjoy and share the freedom we have today.

Let’s also raise our glasses to those who are helping us fight a very different battle.

Until next time xx

The A Word: Lockdown – Week 6

This time last year Jamie and I were setting off for our trip to the US staying in New York, Chicago and Las Vegas. How circumstances have changed, I guess being in lockdown is a bit like being in Vegas, we’re losing money by the minute, alcohol is acceptable at any time of the day and no one knows what day or time it is!

My hair dye experiment has now taken place. At the beginning of quarantine, I saw a funny Tweet that read “in 8 weeks 88% of blondes will disappear from earth”. Well I am proud to report that I continue to be in the remaining 12%. I was somewhat nervous as, on my last attempt many years ago, my hair went orange and I had to put up with it until could afford to go to the hairdressers to have it corrected. My DIY efforts are not always successful either. I managed to shave off half my eyebrow 3 months ago whilst trying to eliminate the little hairs in between, clearly, I should have used my tweezers; it has only just grown back!

On a more serious note, with all the focus on coronavirus, it’s easy to forget that people are fighting other diseases. I recently read that autoimmune conditions are on the increase. Scientists know of over 80 and examples include type 1 diabetes, crohn’s disease, coeliac disease, multiple sclerosis (MS), psoriasis, ankylosing spondylitis and rheumatoid arthritis. I often hear people say they have arthritis, but it’s mostly osteoarthritis they suffer with. Osteoarthritis is caused by mechanical wear and tear on joints. Rheumatoid arthritis is an autoimmune disease in which the body’s own immune system attacks the body’s joints and is extremely painful.

It is estimated that over four million people in the UK are living with an autoimmune condition which is more than 6% of the population and for different autoimmune conditions, incidence is increasing at ranges between 3% and 9% year on year which is worrying. However, its actually worse than that as people affected often live with more than one autoimmune condition. This can lead to health needs that are far more complex and lives that are more challenging. I know this from my own experience as I have 3.

In general, autoimmune conditions are still poorly understood. In some cases, experts know that certain genes or being exposed to particular environmental factors can make some autoimmune conditions more likely. For example, people with ankylosing spondylitis carry a particular gene known as human leukocyte antigen B27 (HLA-B27) which, getting a positive test, was part of my diagnosis.

But that’s not the whole story – something is going wrong with the immune system and currently experts don’t know why. At present, autoimmune conditions cannot be cured. This means that for most people who develop one or more, “a lifetime” of daily management and potential health complications and pain lies ahead which I can certainly vouch for too.

There is also a significant increased risk of mental health challenges. NAAS, the National Axial Spondyloarthritis Society points out that when people are first diagnosed with AS they try to pretend it’s not there, to try and carry on with life as normal. This was certainly true in my case and whilst this can work for a while it has a habit of catching you out, like the time I ended up in A&E as I had no idea how to manage my pain during a flare up.

After time, with diagnosis and treatment it is possible to develop a positive approach to managing your condition which I am much better at now. I make sure I get extensive exercise, do my stretches and take my medication BUT, it’s also important to pay attention to how you manage life as a whole.

Studies show that depression is much more common among people with ankylosing spondylitis than in the general population, with about a third of patients experiencing depressive symptoms. I see this a lot on my Instagram. When I first started to write my blog, I set up an account which is separate from my personal account aimed at sharing my life with ankylosing spondylitis. I provide tips, diet and exercise plans that help to improve my life in the hope it may help others. Most of my connections are people with autoimmune disease and I have been saddened by the number of people who also suffer severe mental health challenges and struggle so much with their daily life in accute pain.

The relationship between physical and mental health is complex and interconnected, with each having a real and measurable influence on the other. Living in pain every day takes its toll. There is lots of research ongoing to understand the prevalence of mental health problems among people with non-psychiatric illnesses so that the best possible patient-oriented healthcare can be provided. Everyday medical professionals and researchers are learning more, and increased knowledge can only mean better help and support.

Finally, as readers of my blog will know our business, like many others, is slow but I can see light at the end of the tunnel. During my career in the City I mostly focused on selling technology into the financial services sector and I can see so much opportunity for technology companies after lockdown. The COVID-19 pandemic will have highlighted many faults in a company’s applications, architecture, data, cloud, infrastructure and network. Hopefully this will lead to more work for us when technology companies increase their sales and marketing teams to meet demand. When we started Mead Partners 12 years ago, we were able to take advantage of the new technology available at the time and all our applications are in the Cloud so we can access our whole business from anywhere in the world.

The pandemic has also taken its toll on consumers, as well as businesses, by changing the way people work, shop and spend their free time. Digital solutions, such as delivery applications, contactless payments and mobile banking, have become a go-to option for consumers in need of a way to efficiently manage their daily tasks, yet remain as safe as possible during the COVID-19 crisis.

COVID-19 might be testing all our resilience and its getting increasingly difficult not seeing our family. However, it’s also helping us to build new ways of working and allowing us to develop new and innovative technology solutions.

In a post-COVID-19 world, hopefully we can take some of the behaviours and lessons learned dealing with the virus and make our world a better place with technology leading the way!