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

The Dilemma

A dilemma is described as a situation in which a difficult choice has to be made between two or more alternatives, especially ones that are equally undesirable.   

This blog is about a dilemma between my mind and my body which is the worst kind for me – what I think versus what I feel. I don’t like competing against my mind as it can be unpredictable and, often illogical, but on this occasion, I had no choice.

We are all faced with difficult dilemma’s during our lifetime, some involving work, some more personal or even a moral dilemma.  I remember studying the well-known moral dilemma at school where there are 10 spaces on the lifeboat but 11 passengers on the sinking ship.  A decision must be made as to who will stay behind.

I find non personal situations much easier to deal with, although I don’t have the right answer for the lifeboat dilemma.   I had a very memorable dilemma when I was working in financial technology sales.  I had travelled from a previous meeting in Luxembourg to Frankfurt; my boss was joining me from London, so we had agreed to meet at the Bank’s offices. We also had a consultant joining us from our German office who was going to run the software demonstration and talk about the technical aspects.  I had already qualified the opportunity through previous meetings, so this was our big chance to prove our capabilities.  My client had invited key members of his IT team too.

On arrival at Frankfurt airport, I had a voice message from my boss saying he had returned home from Heathrow as he was feeling unwell.  I was confident I could run the meeting with my German colleague supporting me, so I wasn’t too concerned.   I arrived at the Bank’s Frankfurt office in good time, and 10 minutes before the start time, I called my German colleague as he hadn’t arrived.  He explained that he was waiting for me at the bank’s technology department which was outside the City and about an hour’s drive away.  Our meeting was due to start in 10 minutes, what to do?  More on that later.

My personal dilemma involved an injury after a fall.   Almost a year to the day, Jamie and I were travelling to Cornwall and had stopped for coffee at Exeter services.  On the way in, I didn’t see the curb and fell flat to the ground.  My left arm took the brunt of the fall, and whilst I was covered in mud with bleeding knees,  I was otherwise unhurt.  I knew immediately something was badly wrong with my arm.  The pain was intense, and I couldn’t move it. I cleaned myself up in the toilets and returned for coffee to decide what to do.   Jamie is a trained Sports Therapist and his studies covered anatomy and physiology.  Between us, with me describing my symptoms, we concluded that my arm probably wasn’t broken but I had either torn or ruptured the tendon to one or more of the muscles in my shoulder (rotator cuff)

We carried on to Cornwall and, luckily, I had all my drugs with me.  Thankfully my good friend Dr Google was also in Cornwall and advised me that injuries such as mine were helped with prescription anti-inflammatories; what a stroke of luck, I had the world’s biggest supply.  If my arm wasn’t broken, A&E couldn’t do much apart from x-ray, prescribe me drugs I already had and refer me to a specialist, so I decided not to go.  As readers of my blog will know, A&E is not my favourite place.

My pain levels were high during that week and, with Jamie’s help, I started on some very basic rehabilitation movements.  I had a Rheumatologist appointment scheduled on our return so I knew I could ask my consultant to refer me for a scan.

Jamie had been correct, during the scan it transpired I had completely ruptured the tendon detatching my supraspinatus muscle from the bone. This is the muscle that elevates the arm and moves it away from the body.  The supraspinatus muscle is the most important muscle of the rotator cuff.  Surgery to repair it often involves re-attaching the tendon to the head of the upper arm bone.  When surgery is combined with a good rehabilitation effort, rotator cuff surgery does allow people to regain much of the lost comfort and function in shoulders.

Now the dilemma!

After rotator cuff repair surgery, you need to plan on being less functional than usual for twelve or more weeks after the procedure. WHAT!  Now I am someone who is always active, probably worryingly so!  I find it difficult to sit down and relax and when I first bought my Fitbit, I wasn’t surprised to learn that I was active for 13 out of 13 hours per day, meaning more than 250 steps in any one hour.  This year my average steps are around 15,500!

Apparently, the shoulder cannot be used with the elbow away from the side for 3 months after repair. Lifting, pushing, pulling and many activities of daily life place stress on the rotator cuff causing tension on the repair risking failure of the surgery.  Driving, shopping and performing usual work or chores are not recommended. Plans for necessary assistance need to be made before surgery. Oh joy, I knew I would be the worst patient imaginable.

Due to my ankylosing spondylitis, in my mind, if I don’t exercise, I get sore, my pain levels increase, and my body seizes up and I can’t stand up straight.   Whilst some of this thought process is based on experience and some based what I have read and been advised, without doubt, a large psychological element was factored in.   In my mind exercise increases my flexibility, improves my posture, which builds confidence and reduces self-consciousness about not being able to stand straight.   My sleep can also be a bit random, but if I am tired after exercise I sleep well.  When I don’t exercise, my stiffness and pain is significantly worse, which results in more pain at night too.  I also know exercise contributes to my overall wellbeing.

I did think seriously about the impact of not having surgery, however, my mind won!  I chose not to have the operation even though my arm was very sore with limited movement.  I decided to rehab the hell out of it and, if necessary, get other muscles to compensate and this is what I did. 

Three months later I met with a very good Consultant who I immediately liked as he had lots of Cornwall type leather and beaded bracelets around his wrist.  He thought my rehab efforts were excellent and I had gained significant movement, most probably with other muscles compensating for the ruptured supraspinatus as it won’t repair on its own.  My arm is still sore, but I push through the pain with every gym workout; I would never recommend this course of action to others, but it was the right decision for me.

With regard to my work dilemma, I called my client from their reception and he came down to meet me.  I explained the situation and we agreed to reschedule the meeting.  Clearly, I couldn’t add sufficient value on my own to warrant an hour of his technical team’s time. 😁.  It’s often easier to admit mistakes and apologise rather than to try and cover up.  My German colleague and I had met with this client twice previously and always at their IT office out of town.  I hadn’t advised him this meeting would be in the City.

I reflected on the definition of a dilemma and thought it to be very accurate. I did have a difficult choice between two alternatives both of which were equally undesirable. I chose the right one to satisfy my mind, whether it was the right decision for my body, only time will tell.

Autoimmune disease, simply put, results in your body attacking itself in some way. Next week my blog will cover another symptom of autoimmune which drives me crazy. 

Thank you for reading my story, until next time xxx

When the going gets tough

When the going gets tough, the tough get going, OR DO THEY?

In previous blogs I have spoken about experiencing 3 setbacks since my diagnosis for ankylosing spondylitis and my last blog covered the 1st of those.   I’ll now talk about the 2nd setback, which was, by far, the most serious.

They say setbacks are great ingredients for a story so off we go.

I was being monitored by my Rheumatologist using The Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) which is the gold standard for measuring and following disease activity.  The Index contains 10 questions related to activities of daily living, which are scored with a rating scale from 0 (no functional impairments) to 10 (maximal impairment).    Given my deteriorating scores it was decided to apply for funding for the biological drug, Humira.   The approximate annual cost of Humira in the UK is over £9,000 per patient based on 26 injections per year so I was very grateful for this opportunity.

There is no cure for ankylosing spondylitis and the medication I had been prescribed only helped to reduce the inflammation that causes pain and stiffness, they don’t stop the disease progressing.  The biologic medications suppress immune system activity, thereby decreasing ankylosing spondylitis disease activity and symptoms. In some people they slow the progression, treat peripheral joint pain and treat spinal pain.  This was great news for me and the prospect of swapping loads of pills for one injection every two weeks was superb.

You take Humira at home, using a syringe or a pen device that already contains the medication. You cannot take it by mouth, because the human digestive system would destroy the active ingredient.  I was a bit nervous about sticking a needle into my leg, but the benefits associated with injecting the drug significantly outweighed the psychological effort required to inject myself.

Dr Google had been on holiday for a while but I was sure he would return to point out the challenges ahead.  However, for now, I was excited about the prospect of living with reduced pain and a lower risk of having a knotted, twisted, gnarled spine that resembled a dead old tree, the vision I had created in my mind.

One of the warnings I was given by my Rheumatologist was that Humira does affect the immune system and can lower your ability to fight infections.  I was given a flu jab and was well aware that I was potentially exchanging one set of challenges for different ones, but I was happy with the risk I was taking.   I also had blood tests, the results of which were all OK, so I was starting this new medication from a good baseline.

I was delighted when my funding came through and my first batch of Humira injections were delivered to my door, a bit like Amazon prime.  My package arrived containing all sorts of interesting things; it included a separate bin for used injection pens and a patient alert card which tells people that you’re taking the drug in case of a medical emergency.  I thought that airport security was going to be a new experience from now on too.

The first injection is carried out under supervision at the hospital.  They don’t do it for you, just guide you through the process.  It all happened seamlessly, it was easier than I imagined,  and I was off on the road to a new, pain free lifestyle.

When I got home,  Dr Google was waiting for me and pointed out a number of risks associated with Humira which I needed to be aware of.  In addition to a reduced ability to fight infection the list was relatively long, and I studied it in detail just in case!  The one that really stood out was the necessity to get emergency medical help if you have signs of an allergic reaction, particularly hives, difficulty breathing or swelling of your face, lips, tongue, or throat.  It didn’t sound very nice, so this point was duly noted and stored in the drugs compartment of my brain.

So, here’s where the setback starts.  I noticed a rash around the injection site on my leg.  Dr Google and I quickly assessed that some people do indeed get a rash around the injection site but, at this stage, no need to worry.  The next day the rash had spread, but only to the rest of my leg so I still carried on as normal.  On Sunday morning my rash was in full party mode, it had taken over my whole body including my chest, neck, face and tongue. 

A&E is an interesting place to visit a Sunday morning; you can still smell Saturday night’s alcohol.  Given that I was taking Humira, the staff at A&E needed to speak to a Consultant to agree what to do with me.

Sunday was also a cricket day for Jamie.  I love cricket; my uncle played at a reasonably high level and as a child I enjoyed the peace and tranquillity associated with watching this wonderful game and this feeling had never left me.  As the wife of a cricketer, there are 3 things you learn very quickly

  1. Never walk behind the bowler’s arm during an “over”
  2. Don’t say “never mind, it’s only a game” when a batsman is “out” and walking off the field
  3. Never pull out on the morning of a game and let your team mates down

Taking the latter point into consideration, I was keen to get cracking and find a resolution to my dilemma.  Jamie is my rock in these situations; I always joke that I go around creating the catastrophes and Jamie is always there to make everything OK again.  Anyway, the consultant was contacted, and it was agreed that because of my “severe flare-up” steroids would be given, intravenously (injected into a vein) to achieve the quickest response.   Fortunately, I was at A&E as this only takes place in hospital.  Once the injection was done, you can then leave and start on a course of oral steroids.

The nurse explained that I might have a burning or tingling sensation around my bottom during this steroid injection into my vein.  It usually goes away once the injection finishes and it is normally given slowly to try and prevent this.  Well, if you have ever had intravenous steroid, you won’t want it again, I assure you!  I reckon my nurse injected it like a supersonic rocket; A&E certainly knew I was there.

So, there I was, leaving the hospital with my hopes dashed and back on more pills than I started on at the beginning of my journey.   The true definition of a setback is an interruption in progress and how long this interruption would remain, I didn’t know.

I concluded that not only had my mind rejected the drugs previously but now my body was rejecting them too. 

Thank you for reading my story.  My next blog will cover my 3rd setback and, yes, I can confirm that when the going gets tough, the tough do get going!

Until next time xxx

The Brain Fog

Due to intense brain fog, all my thoughts have been grounded until further notice!

A meme that resonated at the time and made me smile.

Following a period of significant neuropathic pain, I had succumbed to taking the drugs that had been prescribed for me, including Diazepam (Valium) and Tramadol.  Day 1 of my 5-day prescription was all about reflection as I contemplated the irony of my situation.  My unwillingness to take medication to improve my pain was in stark contrast to my acceptance of alcohol 🍷 💊💊

Having spent most of the 90’s and 2000’s working in the City I had learnt the art of drinking very well.  Initially, I sold trading and risk management software which meant I was right in the heart of the banking world.  I loved my job and I had the pleasure of working for and with some wonderful, super intelligent people.  I had disliked school, but I learnt so much during those City days.  I will be forever grateful to the people who believed in me and invested their time helping me to develop my skills and achieve my ambitions.

The City has changed now but in the 90’s the drinking culture was thought to strengthen professional relationships.  I remember days when myself and colleagues left the office for a client lunch meeting which continued throughout the afternoon and ended up with me catching the last train home.   Whilst I was compos mentis, counting alcohol units had not been on our meeting agenda.    We didn’t have mobile phones until the mid to late 90’s and we certainly didn’t have access to email.  We had no idea what was going on outside of our get together; we talked, we listened, we laughed all without the distraction of our email, Instagram, Twitter or Facebook.  There were no photos of our get together either which was probably just as well!

Acknowledging my liking of alcohol, Dr Google still seemed to favour pointing out the dangers of my concoction of drugs.   The google search revealed that taking Diazepam with Tramadol can cause dangerous effects. These can include severe drowsiness, slowed breathing, COMA, and DEATH.  I found the “coma” and “death” warnings the most disturbing.  It also went on to say that if your doctor prescribes Diazepam with Tramadol, they will monitor you closely and I wasn’t seeing much monitoring going on. 

The main observation I had on day 1 was an improvement in my pain level.  I also felt a bit different, I can’t really explain why, perhaps more relaxed and carefree.   There’s a good deal of research to suggest that “people are not addicted to alcohol or drugs, they are addicted to escaping reality” and this makes complete sense to me as the drugs were allowing me to escape from the reality of my pain.

I also concluded that my brain wasn’t as sharp.  I’m sure my analysis of myself was a bit OTT but I was attempting to carry on working and I noticed I made more mistakes in both written and verbal communication.   I haven’t had many sick days in my career, I tend to rock up whatever as work has always been a good distraction, especially when you have an overactive mind like mine.

Getting back to the subject of alcohol, I knew you shouldn’t drink while taking Diazepam but the advisory for Tramadol is much more serious.  My prescription came with an alcohol warning and Dr Google also informed me that drinking alcohol while taking Tramadol increases the risk that you will experience serious, life-threatening side effects.  Now, whilst I like a glass of wine, perhaps not as much now as in my City days, I reasoned that on this occasion, the risk was too great.

Day 2 was interesting.  My husband Jamie had organised a fund-raising dinner for the cricket club. A guest speaker had also been arranged.  This person was well known and involved in the England cricket set-up; he was arriving at our house before the dinner for cup of tea and a chat with Jamie about format of the evening ahead.   

By now I had developed a shakiness and my hands trembled quite noticeably.   I was taking so many drugs at different times of the day that Jamie had written it down for me including all timings and doses.  I set alarms on my phone so I remembered to take them.

I don’t think our guest noticed anything untoward as I mostly kept out of the way.  The only error I made was to leave my long list of drugs on the table and I had to discreetly remove it.  Had I sat where our guest was sat, I would have been able to read every word!  I didn’t carry the cups of tea either as that would have added further evidence to my drug habit.

I don’t remember much about the dinner itself even though no alcohol passed my lips.  In fact, I remembered much more from my alcohol fuelled afternoons and evenings in the City which was somewhat worrying.  My friend commented that instead of turning my head to talk to people, I turned my whole body which looked a bit strange, but I put that down to the pain in my neck and back.  Other than that, the dinner passed without incident.

On Day 3 we drove to Cornwall, we thought some walking and fresh air might help. I’m not a great passenger as I also drive from my passenger seat!  My memory of this journey was reclining my front seat and watching the world go by without making any comment whatsoever on other road users.

It was the weekend and I was looking forward to some down time.  Jamie and I love Cornwall and stay in the same village on the North Coast every time.  We also frequent a bar/restaurant, which is notorious for fun, drink fuelled evenings so visiting this bar and not drinking alcohol was going to be a challenge. 

As I sat with my elderflower water, I recalled a very funny evening on our previous visit.  Solo artists and bands perform regularly in the bar and on this particular night a fairly well-known artist was booked.  He is even more well-known now due a recent appearance on BBC question time and his subsequent Twitter interaction about “woke”.  Anyway, during his performance (and, in fact, leading up to his performance) everyone had consumed so many shots no one could remember the words, not even the artist himself and it culminated in a mass sing-along with his backing musician leading the way. Needless to say, his car was still parked on the roundabout outside the bar at 11am the next morning.

Days 4 and 5 passed in a bit of a haze and the term “brain fog” was a good way to describe my state of mind.

Scientists believe there may be a link between chronic inflammation and the cognitive impairment that people refer to as brain fog.  There is evidence to suggest that with ankylosing spondylitis, when immune flares release these things called cytokines, they send signals in the brain that get in the way of its normal functioning which can feel like “brain fog”.  I haven’t experienced this with the disease itself, but I certainly felt my brain wasn’t functioning well under the influence of my drugs.

I was pleased when my 5 days came to an end and I was unscathed and, contrary to Dr Google, I was still alive.  I came off the Diazepam and remained on Tramadol for a further 2 weeks by which time all my neuropathic pain and muscle spasms had gone and I felt normal again.  I never want to experience pain like that ever again, but I now know how to manage it and I have a process in place for any reoccurrence.  Getting back to the Nurse at the A&E, she was absolutely correct, when you live with an autoimmune disease, pain management is a crucial part of the learning process and getting it right will make a difference to your quality of life.

This had been the 1st setback since my diagnosis and my next blog will cover the 2nd, which is, by far the most serious.

Thank you for reading and sharing my story.   Don’t forget to take the (prescribed) drugs, they do work!

Until next time x

The Drugs Don’t Work

The drugs don’t work; They just make you worse

Nicely put by The Verve and featured on their third album, Urban Hymns.

I explained exactly this to the Nurse as I sat in A&E in early September 2016, but she didn’t agree.

“Of course they work, you need to learn to manage pain otherwise you will be back here every week” she replied rather sternly!

So, with my fight against Ankylosing Spondylitis underway my next mission was to learn to manage pain, and I had got off to a very bad start.

In my last blog I eluded to the fact that I have suffered 3 setbacks since my diagnosis and this is my story about the first one of those.

I had been plodding along, taking the pills I had been prescribed during my initial consultation, and I was also being assessed for the new biological medication.  I was hopeful for the future, especially if these new drugs slowed down the progress of the disease.

We had been on holiday in France where I had spent the best part of a week lying on a sunbed.  I had done little or no exercise with the exception of an “afternoon stroll” along the beach for an ice cream.  As Jamie and I run our own business, even though it was August, a quiet month for us, we still had some work to do and, sitting on my sunbed with my laptop, was not good for my posture, especially my neck.

My pain levels increased significantly during the latter part of the holiday and continued to get worse on our return home.  Sitting at my desk in the office was impossible. 

With Ankylosing Spondylitis, the pain is mainly inflammatory in the back as well as inflammation pain in the pelvis, neck, intestine, eyes, heels, and various larger joints.   However, a different type of pain, called neuropathic pain can occur in about a third of AS suffers when the nervous system is damaged or affected by disease.

I am quite good at managing the AS pain and have got used to it over the years, especially in my back, hips and neck, but this was very different, I was in agony.  If you’ve ever had an abscess on your tooth, think about how bad the nerve pain was before you visited the dentist and increase it tenfold.  It was so bad I would sit on the floor and cry.

The other problem I had was muscle spasms which is also common in AS.  According to The National Ankylosing Spondylitis Society (NAAS) the pain associated with these spasms can be sharp and intense, and people who experience them explain that they feel as if their muscles are moving beyond their control and I felt mine were in overdrive.

I also thought alot about the definition of pain during this period.  Why do some people have a higher pain threshold than others?  I don’t think I’m a wimp, and whilst I don’t like the drill at the dentist, I’ve always thought of myself as pretty tough.  I was in an car accident in 2013 on my least favourite motorway, the M25.  I was wiped out by a lorry and the car was a right off.  I was perfectly OK (apart from being a bit stiff the next day) but the nice policeman commented that he didn’t see many people as calm as I was after such an incident (he was probably just being kind).  I even managed to blag a lift back to Leatherhead in the tow truck with the damaged car on the back 😊.

Anyway, I diverse, I just wanted to demonstrate that I am generally not a wimp and cope well with difficult situations.

As a great believer in self-help I continued my research into pain.  I learnt that the word “pain” comes from the Latin “poena” meaning a fine, a penalty so I was certainly paying a gigantic fine for some misdemeanour earlier in life.  I visited my good friend Dr Google who found the British Pain Society web site which was interesting.  I thought that if I understood pain better, I could learn to deal with it more efficiently. 

I discovered that pain signals use the spinal cord and specialised nerve fibres to travel to our brain. This involves our whole body. It’s more than just a network of wires. These fibres also work to process the pain signals. All together they work like a very powerful computer and sometimes this computer can go wrong.

The messages get confused and the brain cannot understand the signals properly. It can lead to chronic or persistent pain, which can be very hard to repair; there was no reboot button and I felt my own computer system had completely blown up.

The other interesting fact I gleaned was that our feelings have an effect on our pain. If we feel angry, depressed or anxious, our pain will be worse, and I was bloody furious 😠

The opposite is also true. If we are feeling positive and happy, our pain can seem to be less. We are able to cope much better.

This demonstrated to me that pain is never “just in the mind” or “just in the body” – it is a complex mix involving our whole being and how our brain interprets the signals. This mix can change from one day to the next.

So, with all my research done, the current drugs not working and in terrible pain, I ended up at A&E with the nice nurse who told me off.   I thought that by going to A&E I could FastTrack an appointment with my Rheumatologist.  After seeing the nurse, I met with the consultant who prescribed Tramadol and Diazepam coupled with Amitriptyline.  This would address the nerve pain and muscle spasms and get me back to some sort of normality.

On leaving A&E I think my first words were “well I’m not taking those”!   

I did have some knowledge of these drugs.  Diazepam was first marketed as Valium, part of the benzodiazepine family that typically produces a calming effect.

Mother needs something today to calm her down,” goes the 1966 Rolling Stones hit “Mother’s Little Helper.” “And though she’s not really ill, there’s a little yellow pill.”

I had grown up with some exposure to the damage drugs like Valium can do.  As early as 1964, medical experts were sounding alarms about Valium’s addictive potential. What really triggered the ensuing backlash was the idea that middle-class, mainstream women were Valium’s best customers. A 1975 Vogue story, “Danger ahead! Valium—The Pill You Love Can Turn on You,” warned that the drug could result in a “far worse addiction than heroin”, which has proven to be true.

However, amongst other things, Diazepam does treat muscle spasms, inflammation and nerve disorders so I understood why it had been prescribed.

I didn’t know much about Tramadol, so my friend Dr Google stepped in to help me to understand how bad it was.  Being an opioid painkiller Tramadol is also highly addictive.  In 2014, it was classified as an illegal Class C drug; that means that on prescription it is legal, but taken illegally it is Class C.   However, there is talk of it being reclassified as a Class A drug.

I quite liked the 3rd drug on my prescription, Amitriptyline.  It’s an older drug, generally non addictive, which was previously used as an antidepressant but today is widely used to treat chronic neuropathic pain (pain due to nerve damage).  I had taken it before when I had neuralgia in my face.  However, that was 1 pill per day and my new prescription was 4 per day.  Along with all the other drugs, I had completely lost count of the number of pills I had been prescribed that were going to poison my body.

Following the A&E visit, I lasted 2 days with my stubborn hat on.  My pain levels were sky high and I realised that not only was I damaging myself but my family too.  They were worried about me and I was making it worse for them as well as for myself.  They were too kind to say so, but relieved when I came to my senses. 

So there it is, my 5-day journey into drug induced oblivion had started and my brain was like the Bermuda triangle, information went in never to be seen again.

My next blog will cover those 5 days in more detail and how, for someone like me who hated pills, coped with the effects.

Thank you for reading my story, if you take anything from this blog, please remember the doctor is always right and don’t be stubborn 😊

Until next time x

The Turning Point

Life is 10% what happens to you and 90% how you react to it;  I saw this phrase years ago and try to live by it.  With this in mind my ankylosing spondylitis journey started to take a more positive path.

The diagnosis in January 2015 and subsequent Dr Google investigations had raised a number of questions so I organised a second rheumatology consultation to seek answers.   Carefully chosen, this Consultant was heavily involved in the Faculty of Sport and Exercise Medicine which plays a critical role in improving health through physical activity.  I was optimistic about this meeting and I wanted to understand the implications of my diagnosis, the liklihood the disease would progress and how quickly.

The first sign of Ankylosing Spondylitis is found in the sacroiliac joints, the two joints that connect the spine with the pelvis.  During my initial diagnosis, I found out that mine were already fused.  While a normal sacroiliac joint has a minimal range of motion, sacroiliac joint fusion causes pain as well as difficulty with bending forward, backward, and side-to-side, all of which I experience. 

The inflammation then moves to the spine and can eventually lead to a total fusion culminating in severe disability.  During my Consultation it was agreed that I still had good flexibility, and, as only a small number of people with AS suffer from a total fusion of the spine, my Consultant thought it was unlikely I would be severely disabled.

That said, more recent MRI scans, show evidence of the disease spreading in my spine. Ankylosing spondylitis affects mainly the fibrous tissue junctions where ligaments and tendons attach to bone, called entheses and these are currently showing signs of inflammation, hopefully at tortoise pace.

As well as the reassurance regarding my flexibility, we discussed the advances in medication.  I hated taking the tablets, I often forgot or just didn’t take them, so this was good news.    There are so many side-affects when you take steroids and anti-inflammatory drugs, so I was very interested to hear of alternative solutions.

My Rheumatologist explained that new injectable Biologic medications appear to slow the progression of the disease which the anti-inflammatories don’t do.  They are expensive, available on the NHS but require an assessment period.  This was good news and I left the consultation with a goal to explore these biological drugs further.  Little did I know that this was going to be a major setback which I will talk about in future blogs.

I also came out of that consultation convinced that self-help was going to play a huge part in managing this disease.  As well as researching biological drugs, the 3 areas I was going to focus on were:-

No 1 – Exercise

I wanted to do everything I could to maintain flexibility.  I was fortunate that I have always enjoyed exercise.  I was a half decent 800m runner and enjoyed the gym.  Whilst exercise is crucial for all of us, my consultant explained that gym exercise is an important way of maintaining strength and flexibility.   It improves joint movement, posture control, muscle length and strength, lung capacity, balance, and cardiovascular fitness so it was a “no brainer” for me.

In addition to the gym, Rheumatologists agree that walking can be one of the best ways to ease pain and stiffness.  I have noticed over the years that when I walk, the pain is significantly reduced.   If Jamie and I are on a walking week, my pain levels decrease on average by about 50% which is a huge amount when you live with pain every day.

 No 2 – Weight

Keeping weight off was also part of my self-help.  I’ve always been relatively careful about my weight but it’s even more important now.  Carrying excess weight puts added stress on joints, which can aggravate ankylosing spondylitis, another good reason to maintain my 56 kilos 😊.

I don’t believe in fad diets, in fact, I think some are dangerous.  I don’t cut out any food groups either. I’ve reduced my intake of red meat and I apply the 80/20, eat well 80% of time but I don’t deny myself a burger, pizza or chips!  My friends know how much I love the blueberry muffins in Costa coffee (and the coffee!!).  In fact, I often wonder whether coffee or wine would be the most difficult to give up!

There is so much info on-line about weight maintenance, but the things that work for me are:-

  • Eat out less. … I only need to have one takeaway and a meal out in a week to put on weight
  • Prepare all meals from scratch and use whole foods, protein, fibre, and “good” fat 🍔
  • Strength train, as part of a regular exercise routine. I use weights 4 x per week for 40 minutes each session
  • Never skip meals and always eat breakfast 🍓
  • Get enough sleep. My Fitbit tells me I sleep, on average, for 7 hours 29 minutes per night.  If I don’t get sufficient sleep, I’m hungry and eat more
  • Include cardio every day. My average steps for the last 12 months were 14,764 per day. 😮

 No 3 – Diet

According to the Arthritis Foundation, a diet rich in fruits, vegetables, whole grains, and omega-3 foods like fatty fish can help reduce inflammation.  If you work full time as I do, you need to be very organised to cook food from scratch and not rely on “ready meals”.   As “Count Dracula” reminded me in a recent televised adaptation, “you are what you eat” and I believe this to be true.  Your food choices affect everything, your overall health, the condition of your hair, your skin, the way you feel, the list is endless… 

I also drink at least 2.5 litres of water a day and try to cut out alcohol during the week (“try being the operative word!”).   Some weeks are more successful than others. 🍷🍷.   

I’ll cover more about my lifestyle in later blogs as I believe my strict regime is helping me live a better life.  Everyone has a choice and I can choose to wallow in self-pity or try to make things better through exercise, diet and weight management.   It’s sometimes difficult to motivate myself to exercise, especially on high pain days or during flare-ups.  BUT, and here’s the thing, it really does help, even on days when the side effects of AS kick in such as chronic fatigue, a topic that’s so big, it needs its own blog.

With my journey to self-help underway, my fight against Ankylosing Spondylitis had started.  I have since acquired 3 more autoimmune visitors, just for good measure – Purpura, Raynaud’s and Ulcerative Colitis and, as I eluded to earlier, there were some major hurdles along the way, one of which I will discuss in my next blog.

My body may be experiencing technical difficulties, but I live my life in constant re-boot mode.

Thank you for reading my story, until next time xx

Dr Google

Following my diagnosis and follow-up consultation, Dr Google became my focal point.

“Don’t confuse a Google search with your Consultant’s medical degree” a great sentiment and one I should have abided by.  However,  I didn’t, and Dr. Google became my worst enemy!

Everything that was ever written about Ankylosing Spondylitis that had a negative connotation, I could recite.  The first 3 months were quite tough, coming to terms with a diagnosis for a condition you had never heard of and can’t even spell was difficult.    It doesn’t sound very trendy either, “Ankylosing Spondylitis”, it created a vision in my mind of twisted, knotted bones and made me think of a dead tree.

Dr Google convinced me I would suffer from every symptom associated with Ankylosing Spondylitis. The ones that worried me the most included:-

  • Iritis – I had already had Iritis 3 times so I was convinced I would end up blind and most certainly in my right eye
  • Damage and restricted movement of my muscles and bones as the disease progresses. With some people it can result in severe disability and very limited movement in the spine and “some people” was obviously me.
  • Chronic fatigue. Dr Google told me that this was caused by inflammatory markers called cytokines (whatever those are).  Apparently, they are circulating in my body and fatigue is one of the more common symptoms of AS. Tiredness may get worse because the body is using a lot of its energy to keep this inflammation at bay. The effect can leave you feeling drained of energy.  I was pretty drained already, so I envisaged this getting worse.
  • Heart problems – “some people” (definitely ME) are at an increased risk of developing heart related issues.
  • Osteoporosis is common in people with AS. As if my bones weren’t messed up already, Osteoporosis makes them less dense than normal. I guess my age was also a factor so I was bound to get that!
  • Intestinal tract diseases
  • Cauda Equina Syndrome (common in people who have AS) and can lead to paralysis and other severe issues. The condition usually requires emergency surgery; GREAT, look forward to that one!
  • Amyloidosis – caused by the build-up of a protein called amyloid in the organs, amyloidosis can cause symptoms such as weight loss, and tiredness. Well at least the weight loss will balance out the weight gain from the medication!
  • Nerve damage, such as tingling in the hands and feet
  • Raynaud’s phenonomen
  • Purpura (forget wearing sleeveless dresses) and more on Purpura in future blogs.
  • The list goes on………

Dr Google also turns up at night when you’re asleep to remind you about them just in case you’ve forgotten.  I have since been diagnosed with some of the above, but not nearly as bad as my imagination had led me to believe.

In addition to Dr Google, I also had problems at work.  At the time of diagnosis, my husband Jamie and I were 5 years into running our own business.  One of the reasons I had been referred to rheumatology was a deep pain in my lower back.  Sitting at my desk had become very painful but, as my job involved sitting for long periods of the day, it was becoming a challenge.  I had to rethink my entire office time to stop me constantly whinging about the pain.

Taking the prescribed medication was also difficult to accept.  I did learn quickly that the yellow tablets, Sulphasalazine, stained our light oak dining table when you spilled water over them.  Dr Google was also very helpful highlighting their side effects too, particularly the weight gain and hair loss.

Those 3 months were not great.  It was also winter; my least favourite season and I have since observed that my pain is worse during the colder months.  Often in the summer I am pain free for 2-3 months and I don’t get Raynaud’s which is also a bonus.

Eventually I concluded that “Dr Google” wasn’t doing me any favours and I needed to speak to a professional to source answers to the questions my “extensive” research had uncovered.  Before I move on, I want to point out that I am very proud of our NHS and I am extremely grateful for the care I receive today.  My Consultant Rheumatologist at the Royal Surrey Hospital is superb; however, they are time constrained which I completely understand so I decided to go for a one-off private consultation.   With a private appointment, I felt I could take my time and go through my questions slowly to make sure I understood the implications.

Jamie did all the research and found a superb match, a practising Consultant in Rheumatology who also worked at the Defence Medical Rehabilitation Centre, Headley Court, Epsom.   Amongst other things, he helped our Army personnel who had serious rheumatology challenges cope with army life. 

Exercise has always been a big deal to me as it helped with my pain.  The Rheumatologist Jamie found was also heavily involved with the Faculty of Sport and Exercise Medicine UK which has a critical role to play in improving the health of the nation through physical activity.   For me, the fact that The Faculty concentrated on setting the highest standards for Exercise Medicine, Musculoskeletal Medicine and all aspects of Sport Medicine was a big plus.   I was convinced that exercise, a strong mental attitude and a good diet were going to help me more than Dr Google and tablets, but I needed confirmation.

My next blog will cover the consultation and the start of my journey to self-help….