What is Normal?

Normality is a paved road; it’s 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 social distancing challenging as I would have dished out hugs and kisses galore in our old world, 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 drove to our behaviour during lockdown, some of which I hope will stick around.

My blog readers 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 enjoying the fresh air, even during school holidays.  However, the lockdown seems to have changed people’s behaviour.  I smile to see families walking, cycling, and swimming in the rivers like I did growing up.  I’ve seen families taking picnics together, exercising together and living a much healthier, lower-cost lifestyle.   The amazing weather has certainly helped, but I hope 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, and working from home has improved work/life balance.  Whilst I like the idea of a better work/life balance, I discussed the disadvantages of working from home full-time in a previous blog.  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 gone, and no one is sure when or if it will return.

Companies use video conferencing facilities such as Zoom or BlueJeans, which works well.  I’ve been on several Zoom calls myself, 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.  This is great news for the environment, especially as today is World Environment Day 2020, but is technology a viable replacement for face-to-face meetings?  Is the human connection important enough for business trips to resume?

According to the 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 is still less effective.  I think the business trip will win 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 must be considered in light of our new way of working.

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 and a full day of client meetings were a tough gig.  However, seeing many European cities and experiencing life outside the UK was rewarding.   

On a rare overnight trip to Frankfurt, I arrived late in the evening in preparation for an 8 a.m. meeting the following morning.  I usually took room service, but I 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 and asked where I was headed.  Dressed in my smart business suit and high heels, I advised him I was leaving 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.  It’s still painful, and my gym workouts have focused on “core strength” this week.

Core exercises train your pelvis, lower back, hips, and abdomen muscles.  This improves balance and stability; 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, 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 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.  I rarely 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; 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, background, or 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 of this great man.

Until next time, stay safe and #StayAlert.

Easing Lockdown

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 sales performance and 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 dress up to boost confidence.  Currently, in COVID, I try to intersperse the comfort days with clothes to boost energy and mood levels, which fluctuate during these difficult times. 

I write my blog to raise awareness of autoimmune diseases and emphasise how we can help ourselves live our best lives.  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 from autoimmune disease must deal with chronic pain, chronic fatigue, and many other side effects daily.  To add to the chaos, there’s the additional stress problem, 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, 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, adopting this way of life takes a lot of time and effort.  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 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 many 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 concludes that people with ankylosing spondylitis or other chronic inflammatory diseases have lower Vitamin D levels than the normal population.  I suspect my avoidance of the sun exacerbates my deficiency, too.  Don’t get me wrong, I love the sun, but 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 wear a cap or hat and sunglasses when walking to protect my face.  I have taken this approach since my late 30s when I saw first-hand the damage the sun can do to your skin.  I am also aware of the risk of 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. The amount of Vitamin D 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 into the winter months, you would need a bit more than if you were heading into the summer months if you like to spend time in the sun.

Before my next blood test, I will investigate Vitamin D supplements to see if they make a difference to my Vitamin D levels.  I’ll also keep my readers informed of any improvements in my well-being.  I understand that supplements should be taken with a meal containing 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.

Finally, the new government message #StayAlert resonated with me as the “alert” message was a big part of my sales training.   It was good to 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.  Being at least two moves ahead of the client and the competition was important to win business.  By being alert and quick to notice any unusual circumstances or changes in our client’s 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 to banks requires 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 on the racetrack and our everyday lives.

We should consider the outcome of every move we make and every step we take.

Until next time, keep safe and keep alert xxx

Lockdown

This week, I have received many questions from my blog readers asking how I keep up my exercise regime during the lockdown.  Not only is exercise very important to me, but it also helps to alleviate the pain of my autoimmune disease, Ankylosing Spondylitis.  I also believe that if I suffer from Coronavirus, I want to be as healthy as possible to fight it. 

So, the answer is that I do five 40-minute workouts per week in our “homemade” gym.  There are some great fitness instructors online helping us to come up with innovative ways to use our own body weight in our workouts.  Our home gym workout now extends to using everything around us, including our stairs, chairs and garden steps.  In addition to these five weekly workouts, we walk from home daily.  We’ve found some beautiful circular walks in our local area, and last week, I averaged around 18,000 steps per day. 

I’m sceptical about most things I read online these days.  I don’t believe anything written in our newspapers as journalists put whatever spin on a subject to fit their political agenda.  But if you stick to journals (like The New Scientist) and regulated bodies, their information will be more accurate.  This is because they need to be peer-reviewed. This means that other academics have read them before publication and checked that they are making claims backed up by their evidence.

Therefore, I have taken the advice from the Centre for Perioperative Care (CPOC) experts, who say that keeping healthy will help reduce the risk of becoming severely ill with the virus.  Fortunately, most people who get the virus are sick for about a week before improving. However, that’s when the more dangerous symptoms kick in for others.  It appears that the virus can migrate down into the depths of the respiratory tract, and when the virus reaches the lungs, pneumonia begins, and I want to be as strong as possible in case that happens.

In addition to keeping healthy, I’m keen to keep up my beauty regime!  I’m fairly low maintenance as I’m mostly a DIY girl.  I’ve never visited beauty salons, I don’t have sunbed sessions or spray tans, I don’t have hair extensions or false lashes, and I do my own eyebrows, nails and waxing; however, DIY is not something I do for my hair.  I have always budgeted to visit the hairdressers every 6 weeks.  I have no idea what my real hair colour is, and I’m not keen to find out.  So, I’ve bought myself a hair dye from Boots, which will arrive around the 28th of April, so I’ll reveal it all after this necessary experiment!  If you notice that my social media account has gone quiet, it will be apparent something has gone very badly wrong!  Jamie has also offered to cut my hair, and we’ll be watching some “YouTube” videos first!

Our virtual social life also picked up a bit this week.  We had a great FaceTime call with our friends over a bottle of wine last Saturday night.  We all dressed as if we were going out, and I enjoyed both the dressing up and the chat.  Another friend organised a Zoom quiz (6 teams), which was good fun, and so lovely to see everyone.

In Covid World, the other regular daily event is to watch the briefing from the Government.  One of the journalists asked what we might have done differently as a country knowing what we know now, and it got me thinking about hindsight. 

There is probably an event in our lives every week when with the benefit of hindsight – the wisdom that comes from viewing actions after seeing the consequences – we think we shouldn’t have done that or should have done it this way instead.

But when it comes to life-changing situations like the Coronavirus pandemic, is 20:20 vision after the event fair for official bodies to assess where the fault lies?   Will that process of re-examination go too far? Or is it the only way we learn lessons for the future?

I don’t have the answer, and the question is too big to think about without breaking it down into manageable pieces.   I guess we all reflect on the things we could have done differently.  However, I also realise that if we spend too much of our life regretting our past, our biggest regret will be that we didn’t focus our time and energy on changing the present and the unwritten future.

During my sales training, I was taught that if you don’t have a plan, you won’t achieve your dreams, which I have always stuck by.  So, spending time planning our present and future seems like a much better idea.

Every goal and every dream must take the form of a plan. The old saying “get what you plan for” is so true. Your dream won’t just happen. You must sit down regularly and plan your strategy for achieving the dream. Think through all of the details. Break the whole plan down into small, workable parts. Then, set a time frame for accomplishing each task on your “dream plan.”  These plans don’t need to be complex; wanting to live a healthy, happy life with family and friends is a wonderful ambition.  However, being fit and healthy takes a lot of hard work, and it also means making big changes to daily life.  A plan is even more important when you have an illness or an autoimmune disease, as the focus is often on the disease itself.

The plan is also iterative.  Jamie and I had our remaining work years, and our retirement plan worked out.  When I was diagnosed with ankylosing spondylitis, I thought my retirement might look very different, especially if the disease progressed and my mobility was affected.  Six years after that diagnosis, my situation is still OK, even though the disease is active.

I planned to start taking biological drugs to slow its progression.  I suffered an allergic reaction to the drugs on the first attempt and, after waiting 2 years for a new natural, Coronavirus has intervened.  I was due to start taking them a few weeks ago, and I chose not to as I didn’t want to weaken my immune system, thereby changing our plan again.

Even when we have to change our plan, it’s not the end of the world.  Embracing change is no fun, especially when you look forward to achieving those dreams.  But often, something like Coronavirus comes along, and it changes everything.  Change happens to us all—it’s simply a part of life. And while some change is undeniably good, we often face disruptions that certainly don’t feel welcome at the time.

We are all capable of changing, but often, we are unwilling to acknowledge the need to do so.  Among those who do, often, we don’t do what is necessary to make it happen. 

Keep safe, start on a plan to achieve your dreams and embrace change.

Captain Tom Moore is my new hero until next time, xxx

Unwelcome Visitors

A friend used to tell me about an unwelcome relative who visited her at home and gave her more grief than joy. We would chat about her anxiety before their arrival, and she could hardly wait for their departure.  I now use this metaphor to describe my autoimmune visitors, unwelcome guests who seem to drop by uninvited and unannounced.  These include Raynaud’s phenomenon, ulcerative colitis, allergic rhinitis and the one I dislike the most, purpura, which is my worst nightmare.

As with all autoimmune diseases, having one means it is more common to suffer with others.  There are more than 80 different autoimmune diseases, and according to a study carried out in 2014, women get autoimmune diseases at a rate of about 2 to 1 compared to men — 6.4 per cent of women vs 2.7 per cent of men.

In this latest blog, I was going to talk about the effect these visitors have on me, but, as of yesterday, that changed as I have an “update”, so I’ll talk about that instead and then cover only one of my visitors in a bit more detail.

Last week, I spoke about being nervous about starting my new biological drug.  My baseline blood tests had gone walkabout, so I had hoped there might be a convenient delay.  They have been found, and my new biological drugs are arriving on Wednesday.  I will be under the care of HaH (Healthcare at Home), and my first injection will take place on Monday, 23rd March, under the supervision of a nurse.

To say I’m nervous is an understatement, as these drugs will lower my immunity and increase my risk of contracting Coronavirus.  After my last episode with Humira, I am also nervous about suffering another allergic reaction.   However, I am also grateful for the opportunity to take these drugs, as they can be life-changing. I am excited about living without the challenges I tolerate today.

I appreciate everyone handles worry and stress in different ways.  Because I have an overactive mind, I have learnt to manage my worries to reduce my stress in a way that works for me.  I have several compartments that I allocate “worries to” – a family compartment, work, health, finances and miscellaneous and each worry gets parked in its appropriate compartment until I can deal with it 😊. 

Last year’s “work” compartment was overflowing; we had some bad luck, which affected one of our largest clients, and, whilst it was outside our control, I still don’t like letting people down.  Currently, my “health” and “family” compartments are up to maximum capacity as we wait to see the impact of Coronavirus.  The stock market has also taken a nosedive, so the finance compartment is full, and the retirement plan is on hold for a while.

When I read the self-isolation criteria about the Coronavirus, it made me realise that people with autoimmune disease live with some of these symptoms every day, such as fatigue, muscle aches and a lack of energy.   That, combined with my rhinitis and asthmatic cough, I need to be careful about getting the balance right between self-isolating for the rest of the year and only when I need to 😊.

I mention all this because one of my unwelcome visitors arrives when I am more stressed than usual. Purpura, also called blood spots or skin haemorrhages, refers to purple-coloured spots that generally appear on my arms.

Purpura occurs when small blood vessels burst, causing blood to pool under the skin, and I get these lovely purple patches on my skin that range in size from small dots to large areas that cover my lower arm.  I am thought to have it because of my low platelet levels, which can cause bruising and bleeding.

This particularly unwelcome guest mostly arrives in Spring and Summer!!  It would come in Autumn and Winter when I covered my arms if it was a more thoughtful visitor.  But NOT Purpura, here’s the sun, look who’s come – “Hello Purpura, what a surprise to see you”.    I would share a picture, but I don’t have it now as I am still in jumpers.  As soon as it warms up, Purpura will turn up, and I will share some pics of this delightful addition to my Spring and Summer wardrobe.

On a more serious note, we live in challenging, unsettling times, and many people will have much bigger dilemmas than mine. 

Keep safe, everyone; make wise decisions and don’t buy too much toilet roll as we are down to our last 4 rolls, and I can’t find it anywhere.

Until next time, wish me luck xx.

The Big Decision

Hello, and welcome to my blog. This month, I’m going to chat about decisions.

Most of our day-to-day decisions are pretty low risk: what to have for breakfast, what to wear for work, whether to have a glass or a bottle of wine?  But even deciding on our wine consumption doesn’t change our lives (unless we are down more than our recommended units 😊).  So, it makes sense to me that big, higher-risk decisions can be stressful, like the one I am currently contemplating. 

I don’t generally shy away from making decisions, and during my career, I’ve had to make many, some very difficult.  I admit my decisions have not always been right, but at least I made them and “hopefully” learnt from my mistakes.  There’s a lot of research to suggest that wise decision-makers can be more successful in life. Still, I think people who don’t procrastinate and make relatively quick, informed decisions are the most successful, even if their road to success is bumpy.   Sometimes, you can overthink and lose an opportunity.

So, I am today faced with a big decision involving Coronavirus.  As you can imagine, my good friend Dr. Google is having a field day with this one and through this blog, I will explain my dilemma and bring you up to date on where I am now.

I do not normally worry about media hype and a stock market crash. Still, I have had to put my “sensible” hat on for this decision and consider the implications more carefully. 

My disease is currently active, and my blog readers will know that 2 years ago, after securing funding for a biological drug, I suffered an allergic reaction.  This was a huge setback for me as the natural drugs can slow down the progress of my ankylosing spondylitis.   However, my Rheumatologist has now secured funding for me to try a different biological, Secukinumab, which I can’t pronounce.

I am nervous about the prospect of another allergic reaction and don’t particularly relish the thought of visiting A&E again. Still, I’ve been assured the risk of this happening is very low, and it’s not my main concern.

A main side effect of taking biologic medications is that they suppress your immune system, and you put yourself at risk of infection.  Biologic medications change how our immune system works, and whilst it will help control my inflammatory disease, it will affect my natural ability to fight off an infection. 

I also suffer from asthma; people with AS are at a higher risk of developing it.  Ankylosing spondylitis can also cause pulmonary problems, which include lung disease and ventilatory impairment due to chest wall restriction.  So, taking all this into account, it’s not the lower immunity itself that’s my main concern; it’s more a combination of my pulmonary issues and what we know about Coronavirus causing respiratory tract infections. 

To understand Coronavirus better, I decided reading most media hype was pointless.  Jamie reads New Scientist, which has been a good source of information for us.  I have also taken advice from my Rheumatologist and NAAS (The National Ankylosing Spondylitis Society).  There appears to be a relatively high risk of developing serious complications in people with underlying conditions such as asthma.  That, coupled with my age and a lower immunity due to the biological, is somewhat concerning.  Having worked all my life and saved for retirement, I would be pretty miffed if I got really ill before I could enjoy it.

That said, after careful consideration, I’ve decided to start on the biological as soon as I receive it.  Living with chronic pain is challenging, and I don’t want to procrastinate and lose the funding.

However, after my week of contemplation, I received a phone call from the hospital a couple of days ago, and it looks likely there may be a delay in receiving my biological medication after all.   It appears my baseline blood tests may have got lost 😊.  Under normal circumstances, this would be frustrating, but I don’t feel too upset about it or the prospect of another round of blood tests.  I’d had enough blood taken to fill 20 little test tubes last time, and I can’t help wondering where they are.

On the plus side of the debate, there is evidence to suggest that people who are HLA-B27 positive (like me) demonstrate increased natural immunity toward several viral infections, such as HIV-1, hepatitis C and influenza, although whether this natural immunity carries over to coronavirus has not been studied so perhaps it’s not all doom and gloom.

Regarding the Coronavirus, I am fascinated by the panic buying of toilet rolls in Australia.  In the UK, chicken is very important in our fight against Coronavirus; Sainsbury’s has been out of stock for days.  The shelves are also completely decimated of pizza dough and pasta.  There was no Nurofen, and you couldn’t buy hand gel for love or money. 

So, is it all media hype and panic or will this be an event we will only see once in our lifetime?  Will I get my biological drug soon, and will the biological affect my ability to avoid Coronavirus?  Will I suffer another allergic reaction, and more importantly, will Jamie and I be able to go on our holiday to France in July?  

Only time will tell.

Keep safe, and thank you for reading my blog until next time xx.