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A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness

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Bravery: the quality or state of having or showing mental or moral strength to face danger, fear or difficulty.  The quality or state of being brave

It is not uncommon for others to remark on my bravery in the face of FND.  And in defiance of the many symptoms that accompany life with a neurological disorder.

Those closest to me throw words like brave, resilient and strong to describe me.

For me, however, it comes as a shock.

I look in the mirror and am unable to find bravery, or strength in the reflection staring back at me.  A reflection whereby I am only able to recognise fear and anxiety etched beneath the surface of my face.  I ask myself, can it be true?  Could I be brave, despite not feeling it or failing to recognise it in my reflection?

Reminiscing on my last few blog posts and retrospecting on the difficulties I’ve faced has only made me question other people’s perception of my apparent bravery. During a flare, I feel anything but brave or strong.  My sole purpose was to survive the day amidst the debilitating symptoms. Why is it that others see courage and strength within me, while I am unable to see it in myself?

"During a flare, I feel anything but brave or strong. Why is it that others see courage and strength within me, while I am unable to see it in myself?" Share on X
We are all told that strength and bravery are essential traits – but what does it mean to be brave? How does it look to be brave? Photo by Heather Schwartz on Unsplash

I came to realise that I have yet to recognise bravery within myself because I regularly feel an overriding sense of fear and anxiety.  So intense that it seemingly obliterates the ability to identify with the concept of courage or resilience.  Fear and anxiety, however, feel all too familiar, a supposedly permanent byproduct to life with a neurological disorder.  Another symptom that we have to learn to grapple with alongside numerous others.

"Fear and anxiety, feel all too familiar, a supposedly permanent byproduct to life with illness. Another symptom that we have to learn to grapple with alongside numerous others." Share on X
Anxiety another symptom of life with a chronic illness
Anxiety is often an additional and unwelcome symptom of life with a chronic illness

I have had to become familiar with all kinds of fear and worries while living with a neurological disorder.

Fear and Anxieties That Accompany Chronic Illness

"I fear the disorder and its unpredictability, always on edge, waiting with bated breath for symptoms to present themselves again." Share on X

One such example is the fear of the disorder and the way it takes over my entire life.  I fear the unpredictability of the symptoms; always on edge, waiting with bated breath for symptoms to present themselves again.  There are days when I feel relatively well, days where my mobility is OK and getting around is somewhat easy.  Other days, however, I am debilitated by pain and other symptoms associated with FND.

Hindered further by fear and anxieties; fear of the impermanence that illness has on every facet of my life.  Fear of the permanence of the condition and the huge question mark it leaves in its wake.  Fearsome and anxious thoughts wrangle for attention, shining a flashlight on everything that I cannot control.

"Fear and anxious thoughts fight for attention, shining a flashlight on everything I can't control." Share on X

When symptoms do begin their torment of my body and life, so begins a fear of what it means.  There is a worry whether these symptoms are the beginning of a severe flare.  Or worse, the start of a deterioration in the disorder with which we live.  We fear how long these symptoms will last and what our future will look like if they continue.  There is fear over potential treatments that we may need as a result, which causes further anxieties such as possible side effects. 

Many fears and anxieties accompany life with a neurological disorder.
Photo by Katii Bishop from Pexels

All of these are fears of the unknown. The many question marks that exist when diagnosed with a chronic illness.  And as these fears and anxieties intensify, so does the tight knot in my stomach, making me feel nauseous.  These intense waves of fear and anxiety only cause further exacerbations with the ongoing symptoms.  And as the symptoms intensify, so does the stress, creating a never-ending cycle, one which is difficult to break.

"There is a fear of the unknown when living with chronic illness." Share on X

The Lies They Tell

There are numerous scenarios where these anxieties can take hold, affecting my ability to function outside my limited comfort zone.  Many situations that trigger fear and anxiety, symptoms holding me hostage as worries over becoming severely unwell, or suffering a fall become prominent in my mind.  Even in places which are deeply familiar, where the layouts of shops or certain facilities are ingrained in my memory also becoming fearful due to the unknown of what is going to happen, catastrophising to the worse case scenarios.  Going to new and unfamiliar places, however, can invoke even worse anxiety due to all of the unknowns, and not knowing what to do or the best place to go if the worst happens.  As a result, we tend to confine ourselves inside of our comfort zones, limiting ourselves and markedly shrinking our world.

Homes can become like a security blanket
Our homes and places which are deeply familiar to us can become like a security blanket; somewhere where we feel safe despite the symptoms that are tormenting us.

The fears and anxieties tell us that we are not strong enough and that we are unable to cope with whatever our illness throws at us.  Our minds lead us to believe that these fears and anxieties are more significant than they are.

"Our fears lie to us, making us believe that we are not strong or brave in the face of illness." Share on X

However, they lie.

Our minds make us think that we are to blame for our illness, to make us feel shame towards ourselves for being weak.  I can understand now that this is wrong; illness is something that happens to us, not because of something we’ve done or an inherent character flaw.

"Illness is something that happens to us, not because of an inherent character flaw." Share on X

Anxiety as a Familiar Companion

Fear and anxiety have both been a long companion of mine, has become much a symptom of Functional Neurological Disorder (FND) as pain or trembling in the legs.  They feel familiar and have needed help to try and overcome its effect on my life, especially the impact they have on my experience with a chronic illness.  Many courses, such as one in Acceptance and Commitment Therapy (ACT) have taught me to change how I react to fear and anxiety.  Lessons on how to explore these deep-seated fears and what I can learn from them.

"Fear and anxiety I have become much a symptom of illness, as much as pain or dizziness." Share on X

It is essential to acknowledge the fear and anxiety and to become intimate with them.  By doing so, I can now recognise the physical manifestation, the thoughts that accompany them and finally how I respond. Through mindfulness, I have been able to learn so much about my fears and anxieties, and more importantly the knowledge that I do not have to relinquish all control over to them.  It reminded me of a famous quote by Mark Twain; “Courage is resistance to fear, mastery of fear, not absence of fear.”

Courage is resistance to fear, mastery of fear, not absence of fear

We are all prone to fear and anxiety in our lives, but what make us brave is feeling those feelings and moving forward regardless.  Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us.

"Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us." Share on X

This week, my Mum and I headed to London to visit the Harry Potter Studio Tour.  As a big fan of both the books and subsequent films, it has been somewhere I have wanted to visit for some time.  However, recently, a lot of my symptoms have worsened, experiencing what has been a severe flare.  And as the trip came closer, anxious thoughts began racing through my mind.  My mind began to deceive me into believing that I was not strong enough to be able to cope with the impending trip.  My mind led me to think that my symptoms and illness is stronger than me.  It even tried to convince me; it would be better if I would cancel the trip and not go.

"My mind often leads to believe that my symptoms and illness are stronger than me." Share on X

However, I refused to give in and yield to the demands of either the symptoms I live with or the ensuing anxiety, figuratively sticking two fingers at the intrusive thoughts entering my conscious thoughts.  I went regardless and yes, at times during the tour, it proved difficult because of pain, trembling and vertigo.  But I did it and enjoyed myself regardless.  There have been many instances where I have not been able to go to certain places or do something due to the severity of the symptoms.  Have I ever given up?  No, I may not go on that day but I dust myself off from the disappointment and my recriminations, and I try again tomorrow (or when the symptoms are less severe).

Courage doesn't always roar..I will try again tomorrow

So perhaps, I am braver than I believe myself to be and validation to myself that I am stronger than my illness.

"We are braver than we lead ourselves to be and are stronger than our conditions." Share on X
A Dose of Anxiety: An Extra Ingredient In The Recipe For Chronic Illness
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Mindful Realisations

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Recently, I finished a six-week Mindfulness Course.  I

I was referred to the course by a healthcare professional to help with the anxiety that I have lived with for many years and is a consequence of living with a long-term neurological condition.

Everyday Mindfulness, describes it as:

Mindfulness helps to change the way you think and feel about your experiences, especially stressful situations.  It involves paying attention to your thoughts and feelings in order to become more aware of them, less enmeshed in them, and better able to manage them.

Throughout the course, we learnt about the principles of mindfulness; specifically the triad of awareness, acceptance and non-judgement that the technique is based upon.  Mindfulness teaches us to be focused and aware of the present moment, to acknowledge and accept our feelings without judgement or battling against them, to be better able to embrace them and ultimately let them go.

As the course was facilitated by Mental Health Services, the sessions were focused on the technique being used for anxiety and depression; our negative thoughts were described as being like trains, and when suffering from anxiety we enter the train letting those negative thoughts circumvent our brain.  Mindfulness, however, teaches us to stay on the platform, but allow the trains to pass without getting on.  Such a brilliant and simple metaphor to explain what mindfulness is and its function.

Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them
Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them

As the course progressed, I began to realise that the technique could not only be used for anxiety management but also help with the stress that living with a long-term health condition can have, and as I read further to even help manage chronic pain, which something I have been struggling with for some time now.  This is supported by much research which has shown that patients with chronic conditions reported feeling calmer, better equipped to deal with illness during times of stress and reported higher levels of well-being after incorporating mindfulness into their daily routine.

[Tweet “Acceptance, in essence, means acknowledging that of what we have no control of”]

After starting the mindfulness and relating it to my life with a neurological condition, I came to realise how little I have actually accepted my illness.  When we are mindful, we give our full attention to whatever is happening in the present, and without changing the narrative and judgement of our thoughts and feelings. Acceptance, in essence, means acknowledging that of what we have no control of; accepting life as it is at this exact moment.

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While in the midst of excruciating and debilitating symptoms, however, it is difficult not to judge – ourselves, for our perceived weakness or our failing bodies which cause these symptoms, to begin with.  Nor do we as patients sit there without attempting to change our current experience – we try medications, heat/ice packs, warm baths,  anything to try and ease the symptoms that are consistently bothering us.

Often I feel at war with my body when my symptoms are severe; I curse, hating my weak legs and the other symptoms giving me grief, wishing that at that time I was someone else, had someone else’s body. I worry about the implications of living with a long-term health condition, such as worrying about the future and as a result, my head becomes permeated with worst case scenarios.  So perhaps I hadn’t reached acceptance as I thought.

Mindfulness in many ways somewhat resembles autumn (or fall).  It is said that autumn is a beautiful reminder what a relief it is to let things go that we no longer need, or does not serve us any purpose.  As trees shed their dead leaves during the season; mindfulness allows us to let go of any negative thoughts which don’t help us and only allows us to get stuck in the depths of despair and hopelessness.

[Tweet “Mindfulness allows us to let go of any negative thoughts which don’t help us… “]

Mindfulness instead teaches us to focus on the present; accept our illness and the way its symptoms make us feel allowing these thoughts and feelings to fall into the background enabling us to focus on the positives.  For example, instead of focusing on the pain in my legs, I allow myself to enjoy the feel of the sun on my face or savour the taste of hot chocolate (my favourite Autumn/Winter indulgence!).

Mindfulness is much like autumn reminding us of the benefits of letting go

I am beginning to incorporate mindfulness during my daily routine, alongside the usual practices such as taking medications and journaling.   It is not, unfortunately, a cure for the symptoms associated with my neurological condition, they still exist, but it is a coping strategy for times when everything feels out of my control (which is a lot!).  There are days when I find it difficult, but like anything, it can take practice to perfect the technique.

[Tweet “Mindfulness is a useful coping strategy for times when everything feels out of my control.”]

Mindfulness I have realised can be a mechanism to help find the light, during the darkest of days.

Useful Reading about Mindfulness and specifically its use to help chronic pain and chronic illness: 

  • Living Well With Pain and Illness: Using mindfulness to free yourself from suffering by Vidyamala Burch
  • How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
  • Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch

 

 

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Self-Care & Happy Distractions

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Living with a long-term health condition is hard.  Every day seems the same with juggling the ordinary daily tasks of life with the many symptoms and other effects that chronic illness imposes on our body.  There are so many demands on our bodies, which is why self-care is so critical to our overall well-being.

Self -care can take many forms.  Relaxing, participating in a favourite activity or hobby or just taking time out to enjoy a luxurious bubble bath are some ways which we can take time for ourselves to rest and unwind from the stresses of life with chronic illness.  And self-care is also important to help elevate your mood and provide a little light and happiness from the darkness that chronic illness can sometimes create. sunblock-skincare-healthy-skin-heart-161608.jpg
I’m writing about a special brand collaboration, which I thought would be beneficial for those like me, living with a chronic illness and finding that it has an adverse impact on their mental health, suffering from stress, anxiety or depression alongside their physical health problems.

The brand in question is called The Distraction Box, started by the lovely Rachael and Samantha.  I did a little Q and A with Rachael, one of the founders behind The Distraction Box about the inspiration behind the company and about self-care.
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  1. Hi Rachael, Why don’t you start by telling us a little bit about yourselves and your business The Distraction Box
    Distraction Box was founded by two female business women, Rachael and Sam.  Rachael was forced to leave her high-flying career in Marketing due to health challenges.  After major spinal surgery, serious complications and a subsequent diagnosis of a further two nasty chronic illnesses, Rachael’s life changed dramatically overnight.  Rachael has to work really hard on her health to participate in life – including her emotional health.  That’s where the business idea came from – passion and personal learnings.
    Sam is a Dr of Physiology who has a particular interest in the effects of stress on our physical health.  Sam has also had to live with depression since the age of 17 so also had to work hard on her emotional health. Both founders share a passion for emotional well-being so we thought we’d make a great team!We launched the business in October 2016 and position ourselves as a well-being subscription box for the mind.  We also have one-off boxes which are great for gifts for loved ones going through hard times.   Our subscription packages are available for those who want to invest in their emotional well-being on a regular basis.  We encourage people to invest in their emotional health and not just their physical health.  We have a monthly, 3 monthly and 6 monthly subscription packages and each can be cancelled at any time and very easily.
  2. Where did the inspiration for The Distraction Box come from?  It’s a great name!  How did you decide upon it?
    I used to be an athlete and had the belief that you could do anything in life, as long as you were prepared to work hard enough, and if your heart desired it.  Then, 6 years ago I had a major health challenge that changed my life.  In a nutshell, I suddenly had physical limitations that meant I had to change my life completely and found myself not being able to do ‘what I wanted when I wanted.’This affected my emotional well-being, and I was struggling to cope with grieving my old self, and the frustrations with my new life.  Thankfully I was offered counselling to help me with my emotions – and I found the courage to embrace it.  This was the start of my journey with coming to terms and accepting what life has thrown at me, and even changing my mindset to help.  During that journey, I joined a health group which focused around teaching people how to live with chronic illness.One of the tools I was taught was how to create distractions from physical pain and/or the emotions that come with living with an illness that affects your everyday.  I created my own Distraction Box filled with items that comforted me, helped ease physical symptoms, or simply cheered me up when I was struggling to remain positive.  I love creating my own Happy Distractions and felt that more of us should create them in our everyday lives.  We all face stress and pressure, but not enough of us take the time to ‘switch off’ or manage overwhelming emotions in a positive way.
  3. How do you decide on the products you select for the boxes?  What are your favourite products that have been inside your lovely boxes?
    Both of the founders spend a lot of time researching the right products that we feel would create happy distractions.  We can’t pick many favourites as we love them all (or they wouldn’t be in the box).  However, we love JustBe Botanicals, Re-Mind notepads and the slate heart of self-love which was featured in our February box.
  4. Self-care is a big deal within the chronic illness community.  What are your favourite ways to relax and unwind?
    I have too many ways! I can’t say a specific favourite, but I do love water.  I’d say visiting the pool – even if it’s for a float to take the edge off my pain, or to go for a swim and build strength, I love it.  I have regular hot baths too and have different bath bombs and oils depending on what mood I’m in.  I also meditate once a day if I can – I love finding out where my mind will take me that day!
  5. What do you hope to achieve with The Distraction Box? We hope to spread a little happiness across the UK and beyond, but with an important message; emotional well-being is just as important as physical health.  Working on the mind is a strength and not a weakness – we are so passionate about that.On a practical note, we are hoping the boxes will raise enough money to set up ‘talkitout’ which will change the way the UK view talking therapy.  Watch this space…

I was sent a box for myself to unveil and review for the blog.

The Distraction Box for March was based on the theme ‘Hibernation to Happiness’ which was essentially all about stepping out of the hibernation period of winter and into the lighter, brighter days of spring. 

The box arrived after a long night of insomnia as a result of chronic pain, so just receiving the box was enough to cheer me up.  Upon opening the box, I was greeted with a little green parcel which contained all of the month’s goodies.

It was beautifully packaged and wrapped with care which made me appreciate receiving it even more.  It felt special like having received a special gift for Christmas or a birthday.  With the goodies was also a little booklet which outlined the theme for the month and a description of all the goodies contained in the month’s subscription box.

One of the first things that I noticed after opening the box was a gorgeous citrus scent from the Beefayre ‘Bee Happy’ Tea Lights that are scented with orange and jasmine essential oils.  It immediately lifted my mood and helped me to relax despite feeling uptight after a night dealing with pain.

One of my favourite ways to relax and unwind in the nights is to read or watch something on my iPad while I light a scented candle and so I really loved receiving these.  And they are natural which is a bonus!
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I have previously mentioned that the recent popular craze of adult colouring is also becoming a favourite form of self-care for me when I am feeling anxious or just need to distract my mind from the all-consuming symptoms.  So, I was ecstatic to receive a mini Mindful Colouring Pad with colouring pencils! They are sweet, and the best thing is that both the colouring pad and pencils are pocket sized – perfect for slipping into a coat pocket or handbag to take out on trips, such as hospital appointments so you can take a little time out from your thoughts or anxiety.
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Also, in the box was Birchall’s Green Tea and Peach Infusion Tea Bags and the BakedIn Gluten-Free Mug Brownie Mix, both ideal for those who are health conscious and want to look after their physical well-being as well as their emotional health.  I’m not gluten intolerant myself, but again the thought of Rachael and Sam for those who may have such intolerances really shows their understanding of such concerns within the chronic illness community.

I love writing handwritten letters to friends or other special people in my life.  And I also love to receive handwritten letters, in my opinion there is nothing better than to receive a thoughtful handwritten letter in the mail and which feel a lot more personal than an email or text message.  Which is one of the reasons why I participate in a project called Spoonie Post whereby every month you send a letter or card to a fellow chronic illness warrior to say hello or to cheer them up during difficult times.  In this month’s box was two cards with envelopes which I will be able to use for this project and brighten someone’s day!
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And finally, and probably my favourite item from this gorgeous and positive box was the Happy Mug (perfect to enjoy the green tea and peach in).  With simple colours, and finished with a rose gold detail it has a beautifully inspiring and positive quote that we should all aspire to every day.  I’m not a big hot drink fan, but I am sure that I will enjoy using this mug during times of self-care in the future.
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I loved this subscription box, and all the little goodies were perfect for taking the time to invest in my emotional well-being and for anyone else also living with the effects of a long-term health condition.  I know in the US and Canada various companies have subscription boxes specifically for those with chronic illnesses, but nothing similar here in the UK  (although The Distraction Box does ship worldwide).  However, I think The Distraction Box has this niche market in the bag and would definitely invest in a box in the future during a bad flare or maybe even buying it as a gift for someone going through a difficult time.

If you would like to try out a one-off Distraction Box or are willing to invest in your emotional well-being and sign up for a monthly subscription for a Distraction Box, then go and visit their website and use my code ‘brainlesionandme’ for a 10% off your first box/subscription and enjoy the benefits of their take on self-care for yourself.
And let us take a look at your enjoyment of your own Distraction Box by using the tag #HappyDistractions!

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Living With The Darkness

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All of us will have situations or places that we find difficult; situations that push us emotionally, revealing the depths of our strength and ability to cope with high-stress situations.

Add living with a chronic illness into the mix, and the number of situations or places that we find demanding increase exponentially.  The reasons for the difficulties these places or situations may vary, for some it may be the fear of the ‘unknown’ for example, or even they are a potential trigger for symptoms associated with the condition.  What are some of the places or situations that you find uncomfortable or challenging because of your chronic illness?

One such place for me (could also be classed as a situation too) is the cinema. Especially those large multiplex cinemas that have become so popular, and killing off the small, independent theatres that I prefer.  With its high ceilings, fluorescent lighting and the wide open spaces in their foyers are an enemy to the dizziness and vertigo that accompanies the neurological condition in which I live.

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The Multiplex Cinema – a great enemy of vertigo!

However, with the recent release of the Disney film ‘Beauty and the Beast’ and my intense desire to see it, as the original animated version is one of my all-time favourite films! Which meant that I would have to face the demon that has become the multiplex cinema.

The chain in question is Showcase Cinema, and although in the past I have managed visits to a cinema much further away from where we live, I had decided to try the nearer cinema as yes, it is much closer, but also is more convenient for my needs as a person with mobility problems.

Unlike the cinema, I had visited a few times over the past couple of years; the Showcase is flat and on one level, so no stairs required which are good news for my severely trembling legs.

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Beauty and the Beast. Photo from Disney

The excitement of seeing the film, especially after reading the many fantastic reviews that followed was mixed with trepidation at the knowledge that it would be challenging for the dizziness and vertigo as well as the difficulties that my brain has processing all the visual information.  A couple of times, our plans at going were sadly postponed due to the severity of the pain in legs; pain that left me crying for much of the night and early hours of the morning.

[Tweet “A saying that encapsulates living with chronic illness is “We plan and our bodies laugh.””]

Plans were made to go on a different day, and although the pain was not as severe as before, it was still pretty bad, as well as feeling off kilter.  But then I realised, that there would be no ‘perfect’ day to go and see the film without any accompanying symptoms.

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“People plan, and God laughs”, or the Spoonie equivalent is “We plan, and our bodies laugh!”

If I was going to wait for that one ‘perfect’ day then sadly I might be waiting an extremely long time, or if that perfect day would ever arrive.

As I have mentioned previously, the only predictable thing about living with a chronic illness is the inevitable unpredictability.  The unpredictability that makes scheduling plans so much harder as there is no way of predicting how you will be feeling or what your abilities will look like on any given day.  Then there is the anxiety that symptoms will present themselves when we are out, leaving us in pain and feeling sick when we are supposed to be enjoying ourselves.

[Tweet “The only predictable thing about living with a chronic illness is the inevitable unpredictability.”]

As a result, despite the pain, fatigue, and dizziness I made the decision to brave the cinema anyway.  The symptoms are constantly with me, so I figured that there would be no perfect, symptom-free day to go and face the cinema.  To not go, would be letting my condition win, and this neurological condition has taken enough for me, so why should I let it take away my love for films too?

Despite the positive mindset, I still felt nervous and unsure, but as I went through my handbag, making sure I had everything to take with me, I found a great quote from the Itty Bitty Book Company:
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I did it! I refused to let my condition rule my life, and despite whatever the dizziness and vertigo threw at me I persevered and managed to stay and watch the entire film (which was brilliant and visually beautiful).  It’s strange the strength we have to endure such symptoms and the ability to stay in those situations which are also our triggers juxtaposed with our feelings of weakness.  But one of the reasons why I wanted to share this was to remind everyone struggling with symptoms and living with chronic illness that we are stronger than our conditions.  Our perseverance and tenacity are bigger than our symptoms.  As the above quote reminds us, we can do this (whatever this proves to be).

Sitting there amongst the rest of the audience, I had moments however of feeling entirely alone.  Consumed by feelings of dizziness, and the effects of vertigo while everyone else, including those with me, made me feel alone and isolated, serving me a reminder of how different I am compared to everyone else as well as the tremendous impact that living with a neurological condition has on every facet of our lives.  But again, thanks to the power of social media I realised that I am not alone.  The situations and places that we find difficult and the symptoms they evoke may look different for each of us, but the emotions and feelings they invoke are the same.
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But from going, I also learned some lessons that may help me in future visits, for example, I may need to sit higher up in the movie auditorium as I found that to see the screen properly I had to tip my head back which can be a trigger for vertigo.  Therefore, by sitting further back, I will be in the direct eye line of the screen.  Coping strategies are also needed when facing situations that can trigger symptoms, so it is imperative to find what helps you no matter how silly it may seem to everyone else.

Why I found that inner strength to decide on going to the multiplex cinema, which only leaves me feeling dizzy and nauseous is also perhaps to a new level of acceptance that I have developed since being diagnosed with a neurological condition.

Acceptance which allows me to live alongside my condition and its accompanying symptoms instead of running away and avoiding those situations that trigger the onset of my symptoms.
Now that I faced that of what I was avoiding, I am determined to go again and again and recapture my love of cinema and film.  I am taking back control of my life, playing by my rules and not that of the neurological condition I live with, but which doesn’t have me.

[Tweet “Chronic Illness is something that I live with, but which doesn’t have me.”]

I hope that you too find the strength and courage to face something that you might have stopped doing.

I know you can do it!
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Back to the ‘spoonie’ lifestyle…

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Not long after returning from the cruise; in fact it was four days after returning I had to attend an appointment at my local hospital for an MRI scan.  Although, as many of you will know from reading my last post, the holiday was difficult for me, however a positive of the trip was a break from the monotonous lifestyle of a spoonie, such as the endless days stuck inside the house and the endless numbers of hospital appointments and doctor’s appointments.

But now that I am back home, I am also back to living the life of a spoonie.

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The neurological patient’s most dreaded test…

 

And the first step on the ladder back to the life of a ‘sick chick’ was the MRI exam.  A test that has been nine months in the waiting! Yes, a nine month wait for such a procedure is what you can expect from the NHS in Wales!  And even more surprisingly was the fact that the scan was scheduled for 7.45 at night!

The MRI experience is strange and alien no matter how many times you’ve experienced one… (Click to Tweet)

An MRI scan that many of those of you living with neurological conditions are subjected to regularly.  And it’s an experience that is strange and alien no matter the number of times you have had one done.

The machine itself is big, extremely loud, and rather claustrophobic.  So, it’s no surprise that it can invoke a lot of anxiety in many people.

I have to admit when I experienced my first MRI, I was petrified and anxious, however with like many experiences in life the anticipation turned out to be much worse than the experience itself.  In fact, I rather enjoyed it; feeling cocooned whilst in this strange cylindrical scanner and practicing visualisation techniques as a distraction technique from the noise and my anxiety.  For me, I would much prefer the MRI scan and being enclosed than the CT scan which is more open – I may be in the minority there, but it’s true at least for me.

As, the appointment last Tuesday was not my first MRI scan I was therefore slightly more relaxed beforehand but there were still some butterflies in my stomach as although the procedure is not invasive it can still be very unpleasant due to the noise and confinement in the machine for a considerable length of time (this scan of my brain and entire spinal cord took approximately 1 hour).

As there was no receptionist on the desk on arrival we had to phone through to the MRI suite to inform them of our arrival, and then after a nearly 30 minute wait, I was ready for the scan…

The technician helped to lie down on the table and placed my head in a brace to limit movement whilst the scan took place, and gave me an alarm to hold onto that I could squeeze in case of an emergency.  And of course was given some earplugs to place in my ears to limit my exposure to the loud noises that the machine can produce when scanning the parts of the body under investigation.  When under stress or during periods of boredom (yes, having an MRI can be very boring indeed!) I love to listen to music and I know many people  have reported that they had the option to listen to music during their scan, but unfortunately I have never been offered this option.

After settled in the machine, the technician left the MRI suite and situated herself on the other side of the glass window where she was controlling and monitoring the MRI.  And then it started…

I knew beforehand that this scan would take longer than the last which I found daunting as during my previous MRI I found it extremely difficult to stay still for the entirety of the scan.  I found it true of this scan too, and in fact I was so aware of my body and trying not to move that I was in some considerable pain afterwards. After the scan I also had a headache due to the noise that was produced during the scan – the noise a combination of extremely loud knocking and banging as well as the occasional ringing sounds.

Now, it is just the waiting game until I once again have to visit the neurologist and find out the results of the scan and the other tests that I have been subjected to during the past few months…

Would love to hear all of your MRI experiences?  Good or bad?  What techniques do use to get yourself through the experience?  What techniques can we use to make the experience more ‘fun’ whilst the scan is in progress?

Please get in touch by commenting in the comment box below…

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