The A Word: Lockdown – Week 5

Hands up who’s watched slow TV?  It’s a term used for a genre of “marathon” television coverage of an ordinary event in its complete length. It has grown massively in popularity in its native Norway, and, apparently, it’s likened to taking a chill pill! We recently watched a 2-hour documentary following a shepherd’s journey from summit to valley as he led his sheep off Scafell Pike, reflecting on life caring for his flock in this rugged landscape and he was definitely a man of few words! This level of chilling out is a new concept for me.

Last week, the UK Lockdown was extended by another three weeks and despite quarantine becoming our new normal I couldn’t help reminiscing about our life before Covid World.

Jamie is still making our bread which is amazing, and we are branching out to cakes too. I can now dance my way through Bella Ciao and our daily workouts and walks are enjoyable. BUT I’m missing our family; FaceTime, Zoom and Houseparty are great but they are not the same as physical contact, especially with close family. Jamie and I obviously look better in real life than on the iPhone camera as our grandson asked his Mum if we were born during the war!

I’m also missing our friends, nights at the pub, football, cricket, Cornwall, my hairdresser (😊) and eating out. We have cooked our own food for the last 5 weeks which is an all-time record in the Mead household. Before our work came to a virtual standstill, I spent a lot of my day talking to people. Sometimes, these days,  I’ll start a sentence, and I don’t even know where it’s going. I just hope I find it somewhere along the way.

The weather has been amazing recently and it’s helped to reduce the effects my Raynaud’s. As readers of my blog will know, through sharing my story I want to raise awareness of autoimmune diseases and their effect on daily life. As well as ankylosing spondylitis I suffer with a number of other diseases linked to autoimmune and Raynaud’s is one of them. Raynaud’s is a blood vessel disorder whereby our natural response to cold is exaggerated. The tiny blood vessels go into spasm, narrowing and reducing the blood flow to the affected areas. This response is seen most often in the fingers and toes. But it also can occur in the ears, cheeks, and nose. Basically, during an attack, my fingers and toes look like they have died so I’m pleased it hasn’t reached by nose (yet!”).

Primary Raynaud’s is relatively common and happens without any other illness behind it. The symptoms are often mild.

However, the Secondary Raynaud’s (Raynaud’s syndrome, Raynaud’s phenomenon) happens as a result of another illness which is often an autoimmune disease or a disease affecting the body’s connective tissues. It’s less common, but it’s more likely to cause serious health problems. This can include things like nasty skin sores and gangrene and happens when cells and tissue in our extremities die from a lack of blood and I’m not particularly keen on seeing that.

My Raynaud’s has definitely got worse over the years and I do look forward to Spring and Summer when I suffer a lot less.

People like myself and others much worse off are missing our regular hospital appointments as departments have been reallocated to the front line. It’s more the reassurance my rheumatologist offers that I miss, rather than the blood tests or scans, but we all need to pull together during this time and I still I despair at some of the things see online.

I think it’s OK to be concerned as no one’s immune; everyone’s susceptible. But there are still so many people who want to exploit these anxious days by fanning fears, assessing blame and shamelessly critiquing government officials substituting their own self-centred agendas for a national togetherness that is so needed right now.

I understand politics and I absolutely get the importance of the role of the Opposition to question and scrutinise the work of the Government. But this is not the opposition, this negativity is fuelled by our journalists with their unscrupulous reporting who give bait to the angry people and trolls on social media. The purpose of journalism is to provide people with the information they need to make the best possible decisions about their lives, their communities, their societies, and their governments. I see glimpses of this from the better journalists, but surely providing false information to support their own political opinion is not helpful when it’s so important our country comes together to fight Coronavirus. I did notice that YouTube has banned any coronavirus related content that contradicts the World Health Organisation advice so good on them.

Working in sales taught me you can’t win alone. I was responsible for leading a team competing to win a £25M 3-year deal with one of the largest global banks in the world. Whilst it was theoretically my responsibility, the whole company pulled together in our effort to win. Our finance department was involved on the pricing, marketing generated the lead in the first instance, pre-sales engineers designed the solution and when we got preferred vendor status, legal worked tirelessly on negotiating a contract.

Collaborative selling isn’t a new concept. Behind the scenes, salespeople have always relied on others to help win deals. If a company doesn’t have their teams working collaboratively, they will lose out, simple as that.

The same collaboration applies to everyday life. Winners have one thing in common, a collective group of people who are pulling in the same direction to achieve their goal. This doesn’t mean criticism is banned, far from it, we learn from receiving constructive criticism, but we don’t learn by receiving unhelpful, disruptive, repetitive, negative waffle!

Hopefully, together, we will win against this awful virus. We can come out the other side with a greater appreciation of the importance of our shared unity. Huge sacrifices are being made all over the country from the NHS workers and social care staff working tirelessly on the frontline, to the key workers keeping the country running and those whose routines and normal lives have been put on hold as we all heed the necessary advice to stay at home, protect the NHS and save lives.

I can’t imagine we will have another challenge like this in my lifetime. I would love to look back and be proud of what we’ve achieved. Mistakes will be made, it’s inevitable, but I hope our journalists can be more respectful and truthful going forward. I also hope the people on social media who are vicious and nasty can reign in their attacks, so we are able to look back in our shared history and remember how we all stood together and faced this battle as one strong United Kingdom.

Until next time xxxx

The A Word: Lockdown – Week 4

This week I have received lots of questions from readers of my blog asking how I keep up my exercise regime during the lockdown.  Not only is exercise very important to me, it also helps to alleviate the pain of my autoimmune disease, Ankylosing Spondylitis.  I also believe that if I do suffer with Coronavirus I want to be as healthy as possibly 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 workouts per week, we walk every day from home.  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 on-line 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 that are backed up by their evidence.

For that reason, I have taken the advice from the Experts at the Centre for Perioperative Care (CPOC) who say that keeping healthy will help to reduce the risk of becoming severely ill with the virus.  Fortunately, it seems that most people who get the virus tend to be ill for about a week before improving, however, that’s when the more dangerous symptoms kick in for others.  It appears that the virus is able to migrate down into the depths of the respiratory track 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 as healthy, I’m quite 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 too keen of finding out.  So, I’ve bought myself a hair dye from Boots which will arrive around the 28th April, so I’ll reveal all after this necessary experiment has taken place!  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 got dressed up too 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 that takes place 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 a fair way for official bodies to assess where 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 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 and it’s something I have always stuck by.  So, spending time planning our present and our future seems like a much better idea to me.

Every goal and every dream must take the form of a plan. The old saying that you “get what you plan for” is so true. Your dream won’t just happen. You need to sit down, on a regular basis, and plan out 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.  I believe having a plan is even more important when you have an illness or an autoimmune disease as, often, the focus is always 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 on from that diagnosis my situation is still OK, even though the disease is active.

That said, my plan was to start taking the biological drugs to slow down its progression.  I suffered an allergic reaction to the drugs on the first attempt and, after waiting 2 years for a new biological, 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 make changes to our plan, its 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’re often faced with 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

The A Word: Lockdown – Week 3

I am writing this blog as we get nearer the end of the initial 3-week lockdown period which I’m certain will be extended.  It is likely the lockdown measures will have to stay in place until the Government have got the evidence that clearly shows we’ve moved beyond the peak. 

Whilst I’m sure most of the UK have abided by the lockdown rules, I can’t believe some of the idiotic behaviour of others.  I saw a picture yesterday of an overturned caravan on the M5 in Devon and the traffic jam behind the accident showed a queue of camper vans and cars piled high with bikes and surf boards, all heading to Devon and Cornwall for the Easter which is just crazy.  The police have now put roadblocks in place on the M5 and A303, the two main roads leading into the South West and I am sure other parts of the country such as the Lake District have had to do the same.

Some aspects of social media are driving me crazy too.  With my background in sales, I also have a good grasp of marketing, so I fully appreciate social media for all the good it brings.  In fact, my own blog is only getting coverage because of it.  Twitter has been my most successful platform, followed by LinkedIn and Instagram.   However, for all the good social media can do,  it’s a terrible breeding ground for vile abuse, especially Twitter.  

There is a good deal of information supporting the fact that Politics is ruining most social media platforms and on Twitter people hide behind their faceless profiles to throw out continuous abuse.  I believe we should be respectful of other people’s views and everyone has the right to their opinion.  Imagine if we were all the same, how boring would that be!  No matter what our political view, I was horrified at some of the vicious and completely “barking mad” comments I saw when Boris Johnson was taken to hospital and subsequently Intensive care.  All I can say is these people must lead a very sad life!  Don’t get me started on our journalists either or I’ll be ranting all day 😊.

For people with autoimmune disease it’s also a difficult time.  Understandably, rheumatology departments are closing as staff get redeployed.   The charity NAAS (The National Axial Spondyloarthritis Society) is working tirelessly to provide up to date advice in relation to the COVID-19/Coronavirus pandemic. Record numbers of people are now turning to NASS for support and their helpline and advice service is only possible thanks to donations. It is likely the demands on NASS (and other charities like them) will increase further, there are so many people are working hard behind the scenes to help all of us.

I love the Thursday night clapping for our NHS too.  Our road was a bit rubbish on the first Thursday, but we have got better and last night was our best ever led Jamie’s vuvuzela, a plastic horn typically used at football and cricket coupled with my pan and wooden spoon.  The scenes on Westminster bridge (which I saw on Twitter 😊), were also impressive.  Our family has relied on our NHS, me with my AS and my beautiful granddaughter who had open heart surgery when she was younger, so we have witnessed first-hand how lucky we are to have such a wonderful service.

Jamie and I have adapted well to the lockdown. To limit our exposure, we only shop every 2 weeks and, yes, it is a major planning exercise working out all our meals.  Jamie does the supermarket shop for which I am very grateful.  Although, interestingly, women are generally less susceptible to infectious diseases than men but are more often prone to autoimmune diseases. This higher prevalence is partly attributable to the X chromosome, which has many genes relating to the immune system. It is advantageous for women to have two X chromosomes.

But there is a flip side to this super-strong immune response: it can turn on us. When the immune system creates antibodies that attack the body’s own tissue, it results in an autoimmune disease. Among people with autoimmune diseases 80% are women, however, strangely this is different with Ankylosing Spondylitis as more men are affected than women.  

Taking this into account, while infection rates may be equal, recent data suggests death rates for COVID-19 are hitting men harder at 2.8% compared to 1.7% of women who are infected. It’s a pattern that has persisted. SARS, MERS, and even the flu pandemic of 1918 saw disproportionate death rates among men.

It’s an interesting metaphor to me; during the peak of my career in the City, I was lucky enough to work with some wonderful women who I’m still in touch with today. In the early 2000’s there was a lot of focus on increasing diversity and, particularly, the number of women in senior positions.

It is a well known fact among us women that we have a tendency to attack ourselves with the feeling that we’re not good enough, or we’re going to be “found out” that we’re frauds. It’s a phenomenon that is sometimes referred to as a silent career killer.  I certainly felt like this at times and, whilst I loved working with other women, my workplace was mostly male dominated.  I remember being part of a presentation team to a well-known Japanese bank where, out of the 16 attendees, I was the only woman!  This is continuing to change and improve all the time.   In our current business, Jamie and I place financial technology and technology sales and marketing people into technology companies and about 40% of our placements are women so we are making great progress.

Supporting women in business has also been a real passion of mine. Over the last 10 years there has been increased evidence showing that women directors can help companies gain competitive advantage and increase profits, and that companies that have women on their boards outperform those that do not.  I was also involved in a large project for a major technology company to report back on how they could retain and increase the number of women in their employment.  I found the research for this project fascinating and I loved contributing to it.

On that “Girl Power” note, thank you for reading and sharing my blog.  Enjoy your time at home, keep safe and keep clapping.

Until next time  xxxx

The A Word: Lockdown – Week 2

The biggest thing to happen this week was changing the clocks.  For Jamie and I, the changing of the clocks tends to symbolise the start of warmer weather, longer evenings and the beginning of the cricket season but, right now, time has little meaning.  Each day is mostly a repeat of the one that preceded it, Groundhog Day, a continuous loop of FaceTime and Houseparty sessions.  At least the clocks jumping forward an hour takes us (artificially) one hour closer to the end of lockdown.

Interestingly, this may be our last time for the clocks going forward.  Last March, the European Parliament voted to scrap the twice-a-year change from either March or October 2021. At this point, member states will have to choose whether to remain on permanent summertime or permanent wintertime.

Given that we are leaving the EU, we’ll be able to keep using daylight saving time if we want, although it would cause problems for Ireland, as Northern Ireland and the Republic of Ireland could end up with a time difference of an hour.  From what I read, it’s  likely that if the EU went for the change, then we would follow suit.

Looking at my summertime Outlook calendar reminds me of our normal existence.  Its full of all the activities that fill our life.  The Easter weekend is usually an exciting time for football as the promotion/relegation battles hot up. There are two games over Easter and, Jamie and I often take in both, home and away.  The home game is always a full house with a cracking atmosphere.  This year we are still debating where to go travelling for Easter, the living room or the new Capital of our house, the kitchen.

I write my weekly blog to raise awareness for autoimmune disease following my diagnosis for ankylosing spondylitis 6 years ago.  I try not to moan too much about my level of pain, but it has been higher than normal this week and I have upped my medication to help to alleviate the discomfort.

Unlike ordinary back pain, ankylosing spondylitis (AS) is not caused by physical trauma to the spine. It’s caused by inflammation in the bones of the spine.  Typical back pain often feels better after rest AS is the opposite. Pain is usually worse upon waking and gradually eases throughout the day.  While exercise may make ordinary back pain worse, AS symptoms actually feel better after exercise.  I am doing well with our limited gym at home and we do leave the house for one walk a day so I can only assume my inflammation markers are up.

On a more positive note there are many things that make me smile in our new world.  I was amused at my excitement the Headingly Ashes test match from last Summer was being aired again this weekend even though I know the result which is just weird!  I am also enjoying learning new things.  I have always been a hopeless dancer due to my lack of coordination, so I am doing an online dance class for beginners.  I’m also enjoying playing around with TikTok!  Jamie is producing a daily emoji quiz for our friends and family which is getting very competitive and we are starting to find time to read which is a bonus.  I am left with the blue sky on my jigsaw which, given that every remaining piece is exactly the same colour, its proving challenging! 😊.

I also like to participate in some of the online videos provided by the SAS TV guys like Ant Middleton, Jason Fox and Mark Billingham.  Jamie and I can now do Mark Billingham’s challenging core workout.  I love the positive attitude of these guys too.  When I did my sales training, we were always reminded that our attitude can make such a difference to the way we approach each day.

A Poem that always stuck with me from my training was written by Charles Swindoll (an American Pastor)

“The longer I live, the more I realize the impact of attitude on life.  Attitude, to me, is more important than facts.  It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think, say or do.  It is more important than appearance, giftedness or skill.  It will make or break a company… a home.  The remarkable thing is we have a choice every day regarding the attitude we embrace for that day.  We cannot change our past… we cannot change the fact that people will act in a certain way.  We cannot change the inevitable.  The only thing we can do is play the one string we have, and that is our attitude…

And so, it is with you… we are in charge of our Attitudes”

Like me, everyone will have bad days during the lockdown and whilst we cannot change what is happening in our Country, we can change our attitude towards it.  Research shows that our general mood levels and well-being are partially determined by factors such as genetics and upbringing, but roughly 40 percent of our happiness is within our control. 

For me, and others like me, pain levels play a big part in how I feel but I guess that comes under genetics.  Social isolation can have a profound effect on people’s mental health too, so I appreciate it’s not always easy to choose the right attitude.  However, if the lockdown is teaching us anything, it’s to focus on enjoying what we have, not on what we don’t have. It’s motivating to want more in our career, relationships, bank account, etc., but thinking about what we already have, and expressing gratitude for it, definitely makes us a lot happier.

The biggest irritation though is the way people exploit our lockdown situation.  Like many other things, the price of a jigsaw puzzle has rocketed.  I bought two puzzles for me and one for my granddaughter at around £7.00 each 3 weeks ago.   I looked the other day to purchase another one and they are over £30.00 each and I will never pay that.  Yeast is also impossible to purchase at a reasonable price so Jamie will start to grow our own!

I suspect our lockdown and social distancing will go on longer than the 3 weeks initially announced by the Government.  As quoted by Oscar Wilde –  “what seems to us as bitter trials are often blessings in disguise”, I do hope so.

Take care everyone, until next time xx

The A Word: Lockdown – Week 1

Having spent my life as a working Mum I always looked forward to weekends.  As my life moved on, I continued to work full time and Friday was always very welcome.  Now, as our work has temporarily dried up, every day is the same and Friday has become irrelevant.

I started to write my blog at the beginning of this year to raise awareness of autoimmune disease following my diagnosis for ankylosing spondylitis but my condition pails into insignificance in our new world.

A lot of people with autoimmune disease are often confined to home with symptoms such as fatigue or flare ups of their disease.  My biggest challenge isn’t necessarily being confined to home it’s making sure I can get enough exercise. I have always tackled my AS, physically and mentally, through exercise, both in the gym and walking/hiking.  I knew the lockdown was coming and Jamie and I had stopped going to the gym 2 weeks before so it was important to me that I set up a regime that I could do whilst abiding by the new rules we are under.

Over the years we have collected various weights and a couple of gym mats, so we have set up a limited gym in our house.  It allows me to do core (mostly using my own body weight), and a workout for arms and legs.  I have also been sent some great on-line classes for which I am very grateful.  For cardio, Jamie and I are leaving our house for one walk a day. 

Adjusting to the “new normal”, remaining at home and practising social distancing is challenging and everyone will have their own story.  The great indoors” is something we are all learning to appreciate more. This sudden change to life can feel overwhelming but we are trying to use this period to our advantage, learning new skills.  I have been amazed at how much information is available on-line.  Famed museums like the British Museum are offering online experiences, allowing viewers to learn about the exhibits in the museums at home.   Google’s Arts and Culture section allows us to explore some of the wonders of the world online, including the Taj Mahal, the Eiffel Tower, Sydney Opera House and many more.  Virtual quiz nights are very popular and virtual pub nights seem to be taking off at a rapid pace.

On the downside, lots of people will suffer great hardship over the course of the next few months or however long COVID-19 will impact our lives and it makes me sad to think about just how difficult some people’s life may become.

Our two biggest challenges are keeping my elderly parents safe and sourcing food!

In my last blog I mentioned that my parents live 350 miles away and I have done their weekly online shop for the last 3 years.  A week on and it’s still impossible to get any delivery slots and when I call Tesco’s, after following their automated instructions, I get cut off every time.  We have also signed up with Sainsbury’s and Asda to no avail. I do have a delivery slot booked for 1 April and will try and order more than usual to keep their stocks up.  Whilst we have a good network in their village, shopping is a challenge for everyone and I am working through all the options to try and get a resolution.

Secondly, and more amusing, I have NEVER planned ahead for food!  Commuting and working in London, our food was mostly bought as an after thought on the way home, a take-away or two was included in the weekly menu, along with at least one meal out.  Our diet has improved over the last 10 years, but weekly shops have never been our thing!   So, planning 2 weeks of meals in advance, and not just dinner, but breakfast and lunch is a major exercise.  That combined with actually finding the food is taking up a lot of time.   I was pleased to learn that the off licence had become one of the shops allowed to stay open as I appear to have progressed from bottles to boxes of rose!

Our daily routine has also changed; Jamie makes our daily bread (excuse the religious pun) and, after the home gym workout, our walk, jigsaw assembly, YouTube guitar lessons, FaceTime with family and grandchildren, preparing and cooking (3 meals), and an episode of Peaky Blinders, I’m exhausted and ready for bed!   I was really worried about how our grandchildren would cope and day 1 wasn’t great.  However, by the time we got to day 4 things had improved and we have found some great apps to chat and play games.  My granddaughter and I were playing games at 8am on Wednesday morning until she was called for schoolwork!   At 10am, whilst Dad was on a conference call and Mum at the shops, we were entertaining the children from 40 miles away, how good is that!  They can also chat to their friends through these apps and are continuing to learn new ways to communicate.  That said, it’s very difficult for parents with children of all ages.  My daughter posted a meme that made me smile – “quarantine drinking, every time you hear “Mum”! take a DRINK. Just kidding, don’t do that, you’ll die”

I am also continuing to monitor the concerns about the use of non-steroidal anti-inflammatory medications (NSAIDs) in relation to COVID-19, following recent concerns by the French authorities and social media reports that they could be dangerous.  In the absence of conclusive evidence, the Committee of Human Medicines and NICE have been asked to review the evidence and report their findings.  For now, the advice is still the same.  Those people with confirmed or suspected COVID-19 are to use paracetamol in preference to NSAIDs. Those currently on NSAIDs for other medical reasons (like me) should not stop them.  

Keep safe everyone and thank you for continuing to read and share my blog to raise awareness of autoimmune disease.

Until next time xxxx

The challenges are many

My daughter shared a quote this week that really resonated with me – “what a bloody year this week has been”, and it certainly has, things are changing very quickly day by day.  I also had a conversation with my Mum that, on reflecton, sounds unbelievable.

Mum: “what have you been up to today”

Me: “actually Mum, I’ve spent the day trying to shop for food”

Readers of my blog will know that after years of waiting, I was finally due to start my biological medication this week to help improve the symptoms of my Ankylosing Spondylitis.  I had gone through the decision-making process and I’d decided it was the right thing to do to improve the quality of my life, even though my last attempt at biologicals had gone badly wrong.

However, following the speed at which COVID-19 is spreading and the realisation that our daily life will look very different over coming months I have cancelled my prescription.  I don’t wish to burden the healthcare system with a potential allergic reaction or increase my risk of complications if I contract the virus.  If I do contract the virus, I would have to stop taking the biological anyway so delaying the start makes complete sense now.  These drugs will lower the ability of my immune system to fight infections and self-isolating now would also be necessary.  It was a difficult decision, but the right one.  I can now remove biologicals from my worry compartment and focus on more important things, our family.

I’ve also had to digest new information about my current medication.  The Royal Pharmaceutical Society (RPS) issued a statement on 17 March 2020, in response to recent news and social media reports related to the use of non-steroidal anti-inflammatory (NSAIDs) drugs and COVID-19. These include Ibuprofen and one of the drugs I take, Naproxen. 

Currently, there is not enough information on Naproxen and COVID-19 to advise people to stop using it.   There is no published scientific evidence that NSAIDS (which includes Ibuprofen) increases the risk of catching COVID-19 or make the illness worse. In addition, there is also no conclusive evidence that taking NSAIDS is harmful for other respiratory infections.  That said, current advice is that if I get COVID-19 symptoms I should stop taking Naproxen and use Paracetamol instead.

There is so much to take in on a daily basis and I need to be careful I only read accurate facts and limit my daily use of social media.  I have found myself refreshing the BBC news web site far too often.  I also look at the Worldometer statistics which shows the number of new cases every day in every country.  I have limited myself to reviewing this twice daily as I was on the site up to 7 or 8 times which is crazy.  I had become a world expert in quoting new cases by country which I had to stop doing for my own wellbeing.

Whilst acknowledging that everyone has their struggles in life and some people are dealt better cards than others, generally, we’ve had to play the best game we can with the cards we’re dealt.  However, we’ve still had the freedom to do pretty much what we want, when we want.  It is difficult to comprehend how much this will change over the months ahead. 

As a family we are trying to think and plan ahead, using the technology available to us.  In addition to what the schools are doing, we want to set up Skype sessions with our grandchildren and family. Using FaceTime and Skype will help us all to feel closer to each other.  Communication and kindness will be key to helping us all get through the challenges we are going to experience.

I also have elderly parents, 87 and 91.  They weren’t keen on moving closer to us for reasons I understand, so trying to keep them safe when we live 350 miles away is another challenge.  I have a good support network in their home village for which I am very grateful. I did have a rant on Facebook about people “panic buying” though.  One of my parent’s lifelines is the weekly on-line shop I do; currently I can’t book delivery slots as they are all taken in advance, so I need to get my act together and be better at planning ahead.

I have always thought of myself as an optimist; I tend to be hopeful and confident about the future or the success of something.  That said, in our current situation, I think it is better to a realist, like my husband.  Jamie accepts a situation as it is and is prepared to deal with it accordingly.  Changing my naturally optimistic nature to accept everything that is going on at the moment is very difficult.  My worry compartments are all mixed up and I often feel anxious and nervous about the future.  There will be a large number of people like Jamie and I who are only a few years from retirement and who have carefully saved and planned for this time in our lives only to see the bottom fall out of our pot of gold.

Like many others, we are also concerned about our business.  Jamie and I have managed to run our small search and recruitment business for the last 12 years and before the start COVID-19, 2020 was looking OK.  Most things we were working on have, understandably, been placed on hold so a difficult year ahead from that perspective too.

To top it all we have sold our house!  It’s always been our plan to downsize to help fund our retirement.  We accepted an offer right at the beginning of the COVID-19 virus, before any of us knew the full implications.  Whilst we have a shortlist of 2 or 3 houses that are suitable for us to buy, we have no idea whether our sale will work its way through so watch this space 😊.

There was a recent article in “New Scientist” that pointed out many people seem to be dealing with the recent coronavirus outbreak in one of two ways: by panicking or shrugging. There is a great degree of uncertainty around how bad the COVID-19 pandemic will get, which means it’s easy to over or underreact and make the wrong choices. By understanding the psychology behind what is going on, they ask the question whether it is possible to find the elusive middle ground of worry.  I do hope so and I’m currently working on understanding the psychology which, if I learn anything useful, I will share in my next blog.

Keep safe and listen to the advice.  Thank you for reading and sharing my blog. 

Until next time  xx

Unwelcome Visitors

A friend of mine used to tell me about an unwelcome visitor to her home who gave her more grief than joy. We would chat about her anxiety in the lead up to their arrival and she could hardly wait for their departure.  I now use this as a metaphor for describing my autoimmune visitors, my 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 percent of women vs. 2.7 percent 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.  Alas, 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.   I am also nervous about suffering another allergic reaction after my last episode with Humira.   However, I am also grateful for the opportunity to take these drugs as they can be life changing and I am really excited about the prospect of 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 a number of 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 of 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 pretty full, and the retirement plan is on hold for a while.

With regard to Coronavirus, when I read the self-isolation criteria, it makes 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 😊.

The reason I mention all this is because one of my unwelcome visitors arrives when I am more stressed than usual. Purpura which is  also called blood spots or skin hemorrhages, refers to purple-coloured spots which 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.   It is thought that I get it because of my low platelet levels which can also  cause bruising and bleeding.

This particularly unwelcome guest mostly arrives in Spring and Summer!!  If it was a more thoughtful visitor, it would arrive in Autumn and Winter when I cover my arms.  But NOT Purpura, here’s the sun, look who’s arrived – “hello Purpura, what a surprise to see you”.    I would share a picture, but of course, I don’t have it at the moment as I am sill 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 are living in challenging, unsettling times and a lot of people will have much bigger dilemma’s that 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

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 isn’t going to change the course of our life (unless we down more than our recommended units 😊).  So, it makes a lot of sense to me that big, higher-risk decisions can be stressful, like the one I am contemplating at the moment. 

I don’t generally shy away from making decisions and during the course of my career I have 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 by my mistakes.  There’s a lot of research to suggest that wise decision makers can be more successful in life, but I think people who don’t procrastinate and who make relatively quick, informed decisions are the most successful, even if their road to success is a bit bumpy.   Sometimes you can overthink and lose an opportunity.

So, here 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 am not someone who would normally worry about media hype and a stock market crash, but I have had to put my “sensible” hat on for this decision and consider the implications more carefully. 

My disease is currently active, and readers of my blog 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 biological 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 that either.

I am nervous about the prospect of another allergic reaction and don’t particularly relish the thought of visiting A&E again, but 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 the way our immune system works and whilst it will help to control my inflammatory disease it will affect my natural ability to fight off an infection. 

I also suffer with 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. 

In order to understand Coronavirus better, I decided that reading most of the 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 it I got really ill before I could enjoy it.

That said, after careful consideration, I have made a decision 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 actually don’t feel too upset about it or, indeed, 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 a number of 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 its not all doom and gloom.

In terms of the Coronavirus, I am fascinated about the panic buying of toilet rolls in Australia.  Here in the UK it appears that chicken is very important in our fight against Coronavirus; Sainsbury’s have been out of stock for days.  The shelves are also completely decimated of pizza dough and pasta.  There was no Nurofen and you can’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 xxxx

The Hunger Games

Question of the day!  Why are there never any positive side effects on the leaflet you get with drugs?  Wouldn’t it be great to see “taking this drug may cause superior intelligence” or “taking steroids allows you to eat loads of cake”….I wish 😊

I’ve been prescribed steroids on a number of occasions during the last 5 years as they are used as a short-term treatment for flare-ups of my Ankylosing Spondylitis.  I’ve had steroid injections directly into my muscles.  I’ve also had them intravenously into the vein when I had an allergic reaction to the biological drugs.  I’ve been on steroid tablets (prednisolone) and had steroid drops for Iritis, the inflammation in my eye.   All my treatments have been very effective at improving my pain and stiffness, but they can have terrible side-effects if you use them for long periods. 

I’ve heard people say that when you’re on steroids you can be so tetchy that you start to get on your own nerves as well as everyone around you 😊.  They do make me feel stronger and I can lift heavier weights at the gym but there’s a big difference between the performance enhancing Anabolic steroids and the Corticosteroids which I take.

Anabolic steroids are performance enhancing and have a profound effect on building muscle mass and strength. Athletes or gym users who use anabolic steroids still benefit from their effects long after they stop using them. For this reason, they are prohibited, during competition and in the off-season, by all athletes who are subject to anti-doping rules.  They also have serious side effects and can be dangerous if used incorrectly.

Corticosteroids (which I take) help relieve the pain and swelling of Ankylosing Spondylitis in the short term. However, long-term effects of corticosteroids are not good.  They include a higher risk of osteoporosis, thinning skin and increased risk of infections which is why they are not prescribed too often.  They are also commonly associated with a Moon face, a medical sign in which the face develops a rounded appearance and whilst I love the moon, I don’t really fancy having my face resemble it.

Dr Google is always involved when I’m prescribed steroids as our research concluded that they also help you pile on the kilos.  We found out they affect your metabolism and how your body deposits fat. This can increase your appetite, leading to weight gain, and in particular lead to extra deposits of fat in your abdomen.  Whilst I love the pain relief I get whilst taking steroids, I don’t enjoy the games my mind and body play with each other about how much cake I can eat and still fit into my jeans.

Before diagnosis my life was often blighted by severe neck and back pain and illnesses that I struggled to understand.  Looking back now, I’m sure they were “flare-ups” of my undiagnosed Ankylosing Spondylitis and I would have greatly benefited from my current medication regime, especially the steroids.  I had one particularly memorable experience, the timing of which  couldn’t have been worse as I was away from home.

I was booked on a very early flight from Gatwick to Barcelona for my work sales kick off meeting.  As Head of Sales I had a big part to play in the presentations and break-out sessions, so I knew I had to be there.  I’d been feeling unwell the day before and when my alarm went off at 4am I felt terrible.  I didn’t believe it was flu as I had no temperature or sore throat.  Every muscle in my body was sore and felt like it was seizing up.  I found it difficult to walk and I couldn’t move my neck.  I was taking Nurofen to help ease the pain, but I only just managed to get myself to Gatwick and on my flight.

When I arrived in Barcelona and checked in to my hotel, I knew I was going to struggle to get through the 2 days ahead.   We started day 1 at lunch time and finished at 9pm.  In typical Spanish style, dinner was booked for 10pm and, bearing in mind I had been up since 4am I was feeling awful.  Not only was I ill, but the organisers of our sales kick off had decided it would be  great idea for us to be seated at tables with our colleagues from other parts of the world for dinner which, under normal circumstances I would enjoy.

As I looked for my name card, I realised I wasn’t sat with any of my UK colleagues who would have understood my lack of conversation and helped me to get through.  I was on a table with a mixture of my French, German, Italian, Spanish and Greek colleagues.  I have always felt somewhat embarrassed at my lack of any language skills in these situations as our European friends can speak perfect English.  However, with the Nurofen and wine going down well, I managed to limp along until midnight before making my excuses and heading off for a few hours sleep before the next day’s sessions.

I just about made it through to the end of the event with no idea what was wrong with me.  Its only since my diagnosis that these periods in my life have started to make sense.  On average it takes 7 years for a diagnosis of Ankylosing Spondylitis and, in my case, over 20 years and these sudden, strange attacks of acute pain were always puzzling and often very worrying.

As readers of my blog will know, it’s been a mental struggle for me to deal with the copious amounts of medication I have been prescribed, including the steroids.  However, they have helped me enormously and recalling those periods of pain before my diagnosis, I am very grateful I can deal with ups and downs through taking the prescribed drugs, despite their side effects. That said, following a recent appointment with my Rheumatologist I am very excited and encouraged about the next phase of my treatment which I will talk about in my next blog.

Since I started to share my experience of autoimmune disease, I have received many messages from all over the world about how my blog has resonated with their own situations and it always brings a tear to my eye.   Thank you so much for reading and sharing my story,  it’s important to me to continue to raise awareness and improve the timeframe for diagnosis of all autoimmune disease.

Until next time xxxx

The Invisable Enemy

“Vision is the art of seeing what is invisible to others”……Jonathan Swift…   

As well as being an “invisible” illness itself, autoimmune disease also brings with it many unwelcome invisible visitors.

Before my diagnosis, I had never thought about illness being “invisible”.  There are many conditions that fit this “invisible” umbrella including crohn’s disease, rheumatoid arthritis, multiple sclerosis, diabetes, fibromyalgia, and many others; mental illness also falls under this banner and many people living with chronic pain also struggle with depression and anxiety.  Living with an invisible illness often leads to judgement and criticism because others believe you look fine on the outside, and therefore must be ‘making up’ your suffering.

One of the worst “invisible” symptoms of autoimmune disease is fatigue.  It’s often described as a profound and debilitating tiredness but the main difference from just being tired is that it’s not fixable by sleep.  Attacks of fatigue can occur at any time of the day. You can experience it when you have just woken up or it may come on when you’re physically busy or concentrating a lot.

For me, fatigue happens without warning. It can last anywhere from an hour to the whole day and, in some cases, longer.  I am fortunate that I don’t suffer many attacks of fatigue, possibly one a month, or more if my inflammation markers are up.  

However, other people suffer much more and it’s important to me to try and explain the difference between being tired and experiencing autoimmune fatigue.  Since I started writing my blog most of the messages and questions I receive are about autoimmune fatigue and how I cope.   A lot of people face scepticism and are accused of being lazy or moody and in need of cheering up, calming down, or a host of other dismissive judgements when they suffer this level of fatigue.  It is life changing and one of the most common reasons people struggle to work and support themselves.

So, here’s my attempt to explain the difference.

In 2007 I was working as Head of Sales for a technology company I had joined in 2004.   I’d been hired by the CEO and his Board to run Sales and execute against a 3-year plan to grow and sell the business.   We achieved the plan and the company was sold in 2007.  During the due diligence phase (the investigation the purchasing company does before completing the contract) I was completely exhausted. 

I arrived at our London office for Day 1 of the due diligence straight off an overnight flight from America.  I was nervous about the meetings ahead and hadn’t slept.  As Head of Sales, a good deal of the scrutiny was focused on my area of responsibility and the meetings were very intense.  At the end of day one we went out for dinner and I arrived home at 1am having had no sleep the previous night.  My alarm was set for 5am the next morning and this routine went on for a further three days. 

At the end of this period I was physically and mentally drained.  I couldn’t think straight and all I wanted to do was sleep.   On the last night at dinner, I had the pleasure of sitting next to a chap who was very interested in model railways.  I loved my job in sales as I am interested in people and their hobbies and I enjoy learning about new things.  However, after 3 hours of polite conversation about model railways I knew I had reached my limit.  I needed either more alcohol (not advisable when with clients) or a very powerful energy drink to keep me smiling and neither option was appealing 😊.

When I returned home, sleep fixed my exhaustion.  The next morning was Saturday, I had slept for over 7 hours and felt absolutely fine.

Autoimmune fatigue is not fixable by sleep.

When inflammation is present, your body must use energy to counteract it. The release of cytokines during the process of inflammation can produce a sensation of fatigue which completely wipes you out.  It’s debilitating and stops you doing even the simplest tasks.  It feels like a mountain of weight has descended on you, not allowing you to move and taking away all your energy.  For me it includes emotional exhaustion, it makes me frustrated and anxious.  My body and limbs feel heavy and difficult to move and all my drive has drained away.  This fatigue isn’t the same as chronic fatigue syndrome, it’s a symptom related to autoimmune disease and you have to learn to manage it, otherwise it can destroy your life.

So how do I cope?

I use every ounce of willpower I can muster.  When it happens, I force myself to get up and move.  It takes tremendous focus to work my way through it.  I don’t like to give into it; in my weird and wonderful mind, if I give in, it will get the better of me and the invisible enemy will win.   Willpower is without doubt my magic ingredient.

I gave up smoking years ago and, as someone who really enjoyed a cigarette, it took a lot of failures and a lot of willpower, to finally quit.  As a smoker, I made a conscious decision to forfeit the enjoyment of a cigarette in order to experience improved health and avoid an increased risk of illness in the future.  This is what I do with autoimmune fatigue, I chose to fight it to live a better life.

Every day, we make decisions to resist impulses in the quest to be healthier and happier. Whether it’s turning down a second helping of chips, dragging yourself to the gym, forgoing another glass of wine our will is tested on a near-constant basis.

Exercising willpower to manage fatigue works for me.  Once I have made myself move, I then do something I enjoy thereby distracting myself from the feeling of doom.    In my opinion, willpower is a mental muscle that you can train. Those who can master it will have more control over living a happier and more and successful life.  There is a lot of research on the subject of willpower which I find fascinating as I am always looking for new techniques to improve my determination.

Everyone we meet is often fighting a battle we know nothing about, especially those who live every day with invisible enemies and chronic pain.  Some very apt words have been trending on social media following an Instagram post from someone I didn’t know, but felt immense sadness at her death – “in a world where you can be anything, be kind”

Thank you for reading and sharing my blog, until next time xxx