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The things that make me different are the things that make me…

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This post is genuinely personal and difficult to write, but as I think it will resonate with many others who are forced to live with illness every day, it is, therefore, an important one to write.

There are many times that I dislike myself and am ashamed of who I have become.  If I could be anyone else, I would gladly choose anyone else’s life to live rather than my own.

A lot of that is down to the neurological condition that I live with; everything that life with chronic illness has given me, I believe however that it has taken much more away.

The symptoms that I endure and the impact that it has on my life has stripped away friendships, my independence and ability to provide for myself through meaningful employment that was my aspiration after graduating university and before the deterioration of my condition.  The dreams that I had and the direction that I wanted my life to take was snatched from me and was instead forced to reevaluate everything and take a different path.

[Tweet “Chronic illness has given me so much. However, it has taken much more away.”]

I am sure that I am not the only person living with a chronic illness to feel or have felt this way.

To look at others, measuring ourselves against them and ending up feeling somewhat superfluous in comparison.  When I think of my family and seeing myself through their eyes, I often believe that I must be somewhat of a disappointment to them.

After all, I have not achieved anything substantial during my life thus far. Instead, my life consists of being stuck inside the same four walls or attending one hospital appointment after another.

These thoughts are not consistent and perhaps are worse during the darkest of days.

However, I came across the most beautifully compassionate and profound quote written by A.A Milne and famously said by his most famous creation, Winnie-the-Pooh.

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Perhaps chronic illness is the most significant part of ourselves that make us different but then without it then we wouldn’t be who we have become.

[Tweet “Without chronic illness then maybe we wouldn’t be who we have become. “]

Living with a neurological condition and its symptoms, for many years before being diagnosed, it has shaped who I have become as a person as a result.  If not for living with a neurological condition, I may have become an entirely different person, but then it would not necessarily mean they would be a better person. I like to think of myself as a compassionate and caring person; someone who is there for others and perhaps this part of what defines me as a person is as a result of the experiences of living with this neurological condition.

We often think of chronic illness as being the defining feature of the negative aspects of our personality and lives in general – the loss of independence, loss of self-confidence and so on but perhaps living with a chronic illness may also be the influence for the positive aspects which what defines us.

If it weren’t for chronic illness, I would never have been such an avid user of social media or the author of a blog for example and as a result, would never have found my close friends that I have made since sharing my experiences of living with a neurological condition.

Furthermore, I may not have such a close relationship with my parents if it had not been for the condition that has affected them as much as myself.

The difficulties faced when living with a chronic illness or neurological disorder are extremely difficult, and as a result of living with these for many years, we develop strength and resilience that was not there before the onset of symptoms and may not have developed if not for chronic illness.

The people closest to me can see beyond the neurological condition that I see as being such a big part of my life, and see my value despite the effects of chronic illness, and which I may not recognise in myself.

They recognise the things that make me different from everyone else and yet still love me because it’s those differences that make me and despite me being ashamed of that which makes me different from others.

A.A Milne should be celebrated for not only his profound words and insights of life but also for making those who may feel different from everyone else be proud of those differences and allow themselves to celebrate their individuality.

[Tweet “It’s those differences that make me, despite being ashamed of that which makes me different.”]

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A Spoonie Norwegian Adventure

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At the end of May came the time that my parents and I have been looking forward to – our annual cruise.  And this year, I have been particularly excited as this year we booked a cruise around the beautiful scenery of the Norwegian Fjords.

As the symptoms associated with my neurological condition had worsened somewhat over the past few months, it did incite some anxiety.  However, after the successful trip to Hay-On-Wye the week before our departure did lessen this somewhat; in fact, I almost felt like Stella after getting her groove back!

The excitement for the trip returned, and the Queen hit ‘Don’t Stop Me Now’ became my new anthem as I had an unfathomable determination that nothing was going to stop me from enjoying this much-anticipated cruise, not even pesky symptoms such as trembling legs.

Time to be monkeying around! (one of our amazing towel animals during our stay created by our lovely state room attendant
Time to be monkeying around! (one of our fantastic towel animals during our stay created by our lovely state-room attendant

Of course, as much as a holiday is a brief escape from the realities of our everyday life, and our enduring physical surroundings, there is no break however when living with a long-term health condition however and all of its accompanying symptoms.

[Tweet “As much as a holiday is a brief escape from our lives, there is no break from chronic illness.”]

There were many times during the cruise that I was overwhelmed by the painful sensations flowing throughout my legs, as well as fatigue dragging me under into its grasps.  As a result, I ended up crashing in our cabin after dinner; curled up in bed in comfortable pyjamas and binge-watching a comforting television programme via Netflix.

And one of the many reasons why I love to cruise is that sleep is much more straightforward to come by then when I’m at home, consumed by chronic pain, with the gentle (sometimes not so gentle) rocking of the ship.

Our cabin on Navigator of the Seas
The view from our room!

At first, there was the inevitable FOMO (fear of missing out) on all the evening entertainment on offer (as well as the embarrassment of knowing that there were young children out longer than myself!).  I  could push through the fatigue, pain and other symptoms to stay on and party through the night.   Then, however, I inevitably will end up missing out on more by being too unwell enough to venture off the ship and explore the beauty of Norway for myself (although granted I was able to enjoy some of the stunning scenery from our cabin with its panoramic ocean view).

[Tweet “I could push through to party throughout the night… but then I would miss out the next day.”]

Also bearing in mind, however, that one of the significant benefits of cruising, especially with Royal Caribbean is that some of its entertainment can be enjoyed from the comfort of your cabin through its broadcasting channel on the TV.  So, I wasn’t always even missing out on the fun, and best of all I could do it in the comfort of my PJ’s!

Every spoonie’s dream!

I did manage to take in one show during our week long-stay on Navigator of the Seas; the ice-show with fantastic ice dancers, which I thoroughly enjoyed.  The flashing of the strobe lights did trigger some episodes of vertigo, however, but with the new mindfulness and meditation exercises I have been practicing, I was able to keep the anxiety under control and not react, i.e., panic when these symptoms arose.

I have written about the benefits of cruising when living with a chronic illness or disability previously so I won’t repeat the points that I have already made.  What I will say however is that Norway is hands down the best cruise destination that I have experienced.  Not only does it offer the most amazingly beautiful scenery but found the style of living in this spectacular country to be incredibly relaxing.

We are so used to observe people rushing around here in the UK, busy and in a hurry to get to somewhere, so it was refreshing to be in a country which appears to be much more laid-back and where life runs at a slower pace.  As someone with a body that is continually weakened and tired by constant and incessant symptoms; always trying to keep up with the fast pace of the world around me, I welcomed and embraced this different lifestyle to our own.

In my opinion, I also believe that the Norwegian Fjord itinerary is the ideal choice for those considering their first cruise, or those travelling with a disability.  As many of the ports are within the centre of the city or town, therefore, when disembarking the ship, you are to explore the area at your leisure as all the local amenities are within easy walking distance.

[Tweet “A Norwegian Cruise is ideal, as the local amenities are within easy walking distance. “]

For me, I found this much less stressful than some of the other places we have visited on other cruises, especially those which require a shuttle bus to transport you from the port, which demanded some waiting around in large and claustrophobic crowds.

Bergen, the first port of call we visited, did require shuttle bus transport from the port. However, the minibus for those with wheelchairs was ready waiting for us as we departed the ship which took the stress out. As fatigue descended upon all of us and we were ready to wave goodbye to Bergen, the minibus was again primed and waiting for us right where it dropped us off.

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Bergen on a grey and damp day

The second port of call, Olden which greeted us straight away with its majestic and beautiful views is often a favourite for those who love to hike, but as someone with mobility problems, I am unable to pursue such adventurous pursuits.  I was not to miss out, however, as a little land-train greeted us from the parking area where the ship was moored, which took us around one side of its lake before travelling down the other and back to the ship.  A must for anyone who wishes to take in the beauty of Olden but has mobility difficulties or is in a wheelchair.

[Tweet “The land-train…a must for anyone wanting to see the beauty of Olden but has mobility difficulties.”]

Unfortunately, when we arrived at the third port of call, I was too unwell to be able to venture off the ship to explore the cosmopolitan town of Alesund.  But instead of dwelling on that what I could not do, I instead focused on everything that I had achieved during the holiday despite the wobbly legs and other symptoms that I was continuously fighting.  Thankfully, the day of rest was exactly what the doctor ordered, and I found myself fit enough to go off the ship and enjoy the wondrous city of Stavanger.

[Tweet “I chose to focus on everything I achieved despite chronic illness instead on what I couldn’t do.”]

Mum and I enjoyed the time to walk around this fantastic city and take in some of the more familiar shops such as H and M, Zara as well as observing the all-too-familiar sights of McDonald’s and Starbucks!

My favourite part of the day was taking a wander up to the old town of Stavanger to appreciate the quaintness of its old cobblestones and the cities old homes. It was on this day that my stubborn streak regarding the use of the wheelchair, insisting that I didn’t need it and pushed through the pain.

Of course, by the end of the day, the pain was excruciating, and I was in need of a long soak in one of the whirlpools aboard the ship, which only seemed to ease the pain for a short time.  That would be a piece of advice for fellow cruisers – a mobility aid is there for a reason – to be used, so don’t become a martyr to the pain or other symptoms that may require you to use the chair.

By doing so, you will be able to do and enjoy much more than if you didn’t use it!

To conclude the adventure of exploring the gorgeousness of the Norwegian Fjords, I would have to affirm that this has to be one of my all-time favourite holiday destinations and that I am now a tiny little bit in love with Norway!

[Tweet “I am now a tiny little bit in love with Norway! “]

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Back in the driving seat…

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As I have been enervated by symptoms, almost leading to the feeling of being trapped in a prison surrounded by invisible tormentors.

However, I was not only trapped inside my own body; a metaphorical prison whilst enduring persistent and unrelenting symptoms but these were also keeping me inside my home due to their severity as well as the fear of the possibility suffering another fall in public.  It was as if the symptoms were acting as prison guards, keeping me imprisoned in my home and the same four walls in which I already spent the majority of my time, to begin with.  I longed for adventure, to experience activity and excitement, like the characters in the books that had become my constant companion as I convalesced in my bedroom.

Adventure. Spontaneity.  Two words that are not synonymous with life with a neurological condition.  Going on an adventure when living with any chronic illness requires planning with almost military precision, and is reliant on a number of factors such as how you are feeling on the day that has been set out for the planned adventure.

Personally, for me, big adventures are also dependent on whether or not my legs are being cooperative on the day, and if they are somewhat weak and the wheelchair is needed then it needs to be a mild dizzy day so the motion sickness does not present itself!  Spontaneity is near possible when living with a chronic illness!

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During a short reprieve from my condition and its accompanying symptoms, I made the decision to make a trip to Hay-on-Wye with my carer on a sunny afternoon in late May.  I say that it was a reprieve, but the symptoms were very much there but the severity of them was not as bad as it had been, so it did feel somewhat of a reprieve but at this point it felt that my condition and its symptoms had been very much in the driving seat dictating everything, from how I was feeling to what I could and could not do and I, was tired.   I was ready to finally take back control and be the one in the driving seat instead of being the passenger on my own ride.

Hay-On-Wye is a small market town located in Powys, West Wales is a place that I had been before, but have desperately wanting to return to since.  It’s most famous as being the town of books with an impressive number of bookshops adorning the streets of the quaint little town.  As a massive bookworm myself, this beautiful place is like a little piece of heaven for me, and I was really excited to make a return to this mecca of literature.

The many wonderful bookshops of Hay-on-Wye
The many wonderful bookshops of Hay-on-Wye

The day itself was beautiful with majestic blue skies with a warm gentle breeze.  It was a beautiful start, the only problem being my extremely trembling legs, as unfortunately the place being somewhat unsuitable for a wheelchair, meant that I had to rely on what felt like incredibly unreliable legs.  But even that wasn’t going to stop me as somehow despite how tough things have been, I finally found my sparkle again.  And despite wobbly legs, several near falls and major fatigue I had a great time in this wonderful little town.  I  was able to browse the many quaint and unique bookshops, treated myself to lunch and just sat down and soaked in the sights and a little vitamin D.  It was a great day; probably the best I’ve experienced for a long while.

Above all, I learned just how much control I allowed my condition to have on my life, yes, some of this was because I had no physical control over this such as the severe weakness and trembling in my legs.  However, I let myself believe that because of the severe symptoms I was not able to do anything at all.  I thought this was my reality, when in fact it was only my perception of the situation.  On the day I discovered determination and strength I never knew I possessed. It felt like pain had my legs trapped in its vice-like grip, but determined to seek out lots of books, I carried on.

Yes, my legs were weak and uncooperative, ready to give way in a blink of an eye, but there are plenty of ways to still an enjoy a day out.  The use of a wheelchair, for example, or by taking regular breaks as we did in Hay (and the perfect excuse to enjoy a hot chocolate!). We may not be able to enjoy a long day out, or a day out like we used to but with appropriate accommodations, we can still enjoy a day out somewhere special.  Are there any perceptions regarding your condition that you think to be a reality?

Admittedly, I perhaps overdone things that day given the fatigue and amount of pain I experienced days after but even that cannot tarnish the memories and the experience of the day.  And above all, it felt brilliant to be back in the car, even if I’m not always in control…

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Diagnosis is not the end of the story…

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Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, a functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder, however, shows no signs of structural abnormalities but is rather a problem with how the brain functions.

It is a problem with how the brain is sending or receiving messages.

If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however, there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.

As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.

And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger to having been through it several times before.  I am not sure how I feel about this, initially, I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially skeptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences, however, I have learned that even after getting a label, diagnosis is not the end of the story…

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A New Chapter Begins…

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It’s been so long since my last post.  In the time during my absence, a notable change has occurred – the end of one decade of my life and the beginning of another one, yes, since my last post two months ago I have turned 30 years of age!  Of course, the occasion was somewhat low-key, opting for a spa break consisting of being pampered instead of a large party with family and friends which could only exacerbate new feelings of fatigue, and which flashing lights and loud music would be intolerant for the dizziness and vertigo that are already problematic.
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It’s funny that when on the precipice of such a milestone is the reflection, not just on the past thirty years of one’s life but a reflection on future plans and the possibilities that lie ahead for the next thirty years.  Then there is the barrage of questions that people pose on such occasions, such as “How do you feel?” or “What are your plans now?” It’s as if people view these birthday milestones, such as turning 30, 40, 50 as a beginning of a whole new chapter of our lives.  The past finished within the pages of previous chapters and we are reborn as whole new characters in the story of our lives with endless opportunities that await us in the big wide world.
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When living with a neurological condition, or other chronic illnesses, however, the view is very much different…for us, these milestones are not the precipice for change and unfortunately are not reborn with a new future and endless possibilities awaiting us.  Our bodies are still very much broken and the symptoms that tormented us during the previous chapters that are the story of our lives still very much exist.

Pain, fatigue, dizziness amidst the other symptoms that I live with was unaware and didn’t care that it was my thirtieth birthday and they still made their presence felt on a day that was mine.  And even since, my thirtieth birthday the promise of a new beginning and chapter has proved to be unfruitful, and the symptoms have been unrelenting as ever.

This has especially been true regarding the pain and trembling in both of my legs.  Recently, I read a book that described the pain as a universal human experience.  Whether the pain is a physical sensation or through emotional turmoil, pain is something that we will all experience during our lives.

And I totally agree, but although we are all united in the shared experience of pain, isn’t it funny that when we are in the midst of experiencing pain, it feels like an entirely lonely place? This was the case during our recent spa break, when I found myself, in the early hours of my birthday, in excruciating pain while sharing a twin room with my Mum who was sound asleep.

Preparing to start writing a new chapter
Preparing to start writing a new chapter

Trapped in a body where the pain is ravaging my legs, in unfamiliar surroundings and during the early hours of the morning where everything was still and silent,  felt completely alone as if I were the only person alive experiencing pain.  Of course, I am not and visiting social media sites such as Twitter and reading the posts from others emphasises the realisation that I am not alone in the fight against chronic pain and that there is an unwavering amount of support from those who understand and live with pain themselves.

It was not just the pain however that has made me feel lonely and isolated as of late, but also the severe trembling of the legs that has often rendered me unable to venture far from wherever I am at the time.  More time being spent lying on my bed reading or watching TV programmes or films on my iPad.  Even going out, more time is spent sitting in coffee shops enjoying the warm, luxurious taste of hot chocolate while talking with whomever I’m with or spending some time reading.  Anything but traipsing around shops as legs often feel like they are too weak to support my weight.  This has been particularly emphasised by the number of times my legs have collapsed from under me leading to some rather embarrassing falls in public.

The pain and trembling it seems has made my world smaller once again.  Perhaps that is why I have found myself reading more books in recent times, as the stories that I am reading is able to take my mind to new places when my body is limiting to the places that I can physically visit.

In our lives we find that a lot of chapters close and new ones begin, waiting to be written but certain elements within our personal journeys remain, such as living with a neurological condition, chronic illness or disability as an example.  However, that is not to say that they have to dictate our narrative, or that the narrative cannot change. It just means that we need to take over the reins of the journey and find ways to take back our control and new ways to cope with the obstacles that are in our way.  As the esteemed writer, Nora Ephron famously said: “Be the heroine of your life, not the victim.”
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And as I wave goodbye to my twenties and enter a new decade of my life, I hope to become the heroine of my own story, to look forward to the future and the new possibilities and opportunities that lie ahead…

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