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In Chronic Illness

2017: A Year for Grace

January 6, 2017 No Comments

2017 is, many would argue is finally upon us.

It is the time for new calendars, new diaries, and for many the promise of a fresh start as if January 1st provides a clean slate, erasing all of our past mistakes and bad habits. As if the turn of a date on a calendar assures us that we will become entirely new and improved people.

It is also the year when lots of people make ambitious and unrealistic new year’s resolutions which will inevitably be broken before the beginning of February.

For those of us living with chronic illness, however, making new such resolutions can be especially difficult as, well, our lives are completely unpredictable. We wake each day not knowing how we are going to feel that day, or what we will be physically able or unable to do. One day we can be living a seemingly normal life, running around doing chores whereas we can be in the midst of a flare the next, the only thoughts being how to survive getting through the day.

Some days we are able to live whereas others are about just existing.

scrabble-resolutions — It’s the time for making new promises to ourselves to make us better. What are your resolutions for 2017?

With this mind, therefore, how can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? We may have all the intention in the world to keep such resolutions but when living with chronic illness we are often not in control of our own bodies and instead are governed by the constant symptoms we endure. Are we setting ourselves for failure by making such unrealistic expectations? Could it also affect our already fragile confidence if we do indeed fail in these unrealistic expectations for the new year?

A new recent trend advises forgetting to make New Year’s Resolutions and to instead focus on just one word that sums up who you want to be or how you wish to live your life. The word, if given full commitment can not only shape our year but also the person we become. The word chosen is said to be a compass which can be used to direct our decisions and guides ultimately how we live day-to-day.
My word last year was HOPE. Although many people would describe me as a positive person, I often felt that hope was out of reach because of the effects that living with a neurological condition was having on my life. I wanted my life to be about hope; focusing on the positives instead of dwelling on life with chronic illness. To be able to appreciate and embrace the small joys of life and celebrate the achievements, however small.

This year my chosen word is GRACE. Life with a neurological condition for me personally continues to be challenging and difficult. Every day, the symptoms associated with my condition affect my daily existence dictating what I am or not able to do. And that can be frustrating and burdensome.

According to its many definitions, grace is about being at ease with the world, even when life is arduous such as living with a life-altering medical condition. To live with gratitude; being thankful for what I do have in my life, and being aware of the blessings that even challenging times provide.

Grace, for me personally, is also about kindness – showing kindness not only to others but also to yourself. For those living with chronic illness, we are not always guilty of showing ourselves kindness instead harbouring feelings of regret and repentance of things we are not able to do or for cancelling plans whilst we are in the midst of a flare. Often we harbour feelings of resentment towards our conditions, wishing them away and yearning to be ‘normal.’

But what if grace was also the acceptance that life is not always about trying to be a round peg attempting to fit inside the square hole. What if grace is instead about finding our unique and individual strengths whatever our circumstances and despite the personal limitations that each of us is living with and developing those as best we can.

Grace is finding purpose in our lives; doing what we love and loving what we do.

And that is my wish for 2017.

What would be your one word?

In Chronic Illness

Meet and Greet: 12/31/16

January 1, 2017 No Comments

A great opportunity to connect with other bloggers, writing about a wide range of different topics and expand your reading repertoire!

In Chronic Illness

The Unchanging Existence of Life with Chronic Illness

December 27, 2016 No Comments

“But everybody’s changing and I don’t feel the same”

– Keane

Well, Christmas has now been and gone. The presents have been enthusiastically ripped opened. We’ve overindulged ourselves with turkey and all the other delicious trimmings that adorn our plates (as well as all the chocolates that someone has inevitably bought you!). Sick of turkey yet anyone?

Now as we enter the last week of 2016 however, it is a time to reflect on the year that has passed and the journey that we’ve been on during the last 12 months. Change is an inevitability of our human existence, as Meredith Grey once said: “it is literally the only constant in science.”

However, when living with a chronic illness or long-term health condition, we can often feel stuck; that our lives have become stagnant. Every year when reflecting on the year that has passed we often come to the stark realisation that although change is apparently inevitable, our lives with chronic illness has not, and are living with the same illness and its symptoms that we were the year before. It seems that everything changes apart from life with chronic illness.

[Tweet “It seems that everything changes apart from life with chronic illness.”]

At the beginning of the year, for instance, the severity of the trembling in the legs was intense, affecting my mobility and my day-to-day quality of life. This year, it feels that nothing has changed much in regards to life with a neurological condition. Chronic illness it seems does not understand time, keeping us firmly in its tight grasp and not allowing us to move, change and grow like other people our own age.

15621741_10157907485590534_567984880086716641_n — Again this year because of illness, much of my time has been spent in the four walls of our family home – often needing to spend it lying down in cwtched up with one of my blankets

Today I am surrounded by the same four walls that I spend the majority of my time in, and just like this time last year I find myself alone and isolated from the outside world. It seems that although people may change when living with a long-term health condition however very often our circumstances do not. It feels although we are stuck, encased in quicksand, unable to get out.

Looking outside at the wider world we wish that we could be a part of it, instead of being confined to our homes.

woman-and-window-1528875 — Isolation seems to be another symptom of life with chronic illness

That is not to say that 2016 was all bad. There were times when the limitations and barriers that often exist became unnecessary and I enjoyed time away from the day-to-day existence of living with a neurological condition. There was, of course, the wonderfully relaxing and breath-taking cruise around the Norwegian Fjords. And several challenging but enjoyable days out with my carer including Hay-on-Wye and Hereford.

Welcome to Navigator of the Seas!

As enjoyable as they were, of course, nothing about my circumstances of living with a neurological condition had really changed. With every step, I could feel the trembling in my legs, fighting the terrible weakness that often causes my legs to give way and sending my body crashing to the ground. The excruciating pain that feels as though my legs are trapped in a vice-like grip. Attempting to ignore the dizziness and the accompanying double vision that threatens to knock me off-balance. Just as these symptoms have for the past 365 days (and even more).

[Tweet “These symptoms have been the same for the past 365 days (and even more).”]

Also, the lack of answers and knowledge regarding the symptoms that I am constantly living with is yet another aspect of life with a chronic illness that has not changed. Although an appointment to see a top neurology consultant in London has come through for April so hopefully, 2017 will become a year of gaining some much-needed knowledge and insight and learning exactly what I am up against.

clocks-1427753 — Time is constantly moving forward but living with a chronic illness we can often feel that we are stuck – as if our lives are on pause

But as we set to embark on a new year and wave goodbye to the last, reflecting on the events of the last 12 months, perhaps it is time to celebrate the small and seemingly insignificant achievements. Achievements that although may seem inconsequential, for those living with chronic illness, are in fact a huge milestone and a precipice to small changes that may go unnoticed even by us.

Perhaps I have been too focused on the big changes that never happen in my life to really see and appreciate the small changes that occur despite living with a chronic health problem. The increase in confidence despite the worsening symptoms, allowing me to venture further than I have before, for example.

I am hoping that 2017 will be the start of even more changes in my life, yes it will be nice if those changes were colossal ones, such as a lessening in the severity of my symptoms or even a definitive diagnosis for my symptoms, but even if this doesn’t occur then I hope that I can notice and appreciate the small positive changes that do occur.

What changes are you hoping for in 2017?

In Chronic Illness

I Blog Because…

August 6, 2016 No Comments

I was recently received a DM on my Twitter account from fellow blogger John Sennett asking me if I were interested in taking part in a campaign that he created called #iblogbecause, an initiative to spread positive messages around the blogging community. Here is his original post on the idea for the campaign to find out more and perhaps even to take part yourself. So here is my contribution on the reasons behind why I blog.
In my personal experience living with a neurological condition has in some ways stolen my voice and effectively trapping me amongst the same four walls in which I spend the majority of my time.

The pain and torment that the symptoms associated with my condition create in my life remain invisible to the rest of the world, of course, there are subtle signs of a life filled with pain and illness if one chooses to notice. But largely, the life I live with constant and relentless symptoms remain unseen, trapping me in a bubble that only I am aware of as the rest of the world walks on by.

And so I blog because it gives me a voice.

As someone who is somewhat of an introvert and not eloquent in the slightest when it comes to public speaking, I am unable to use my voice to raise awareness of issues and life with an invisible neurological condition. However, give me a pen and paper (or a computer and keyboard) and I am able to write as some people tell me quite eloquently and to use this to write what life is like with such a condition as well as issues that affect and are important to the chronic illness community. To have a voice and say in such matters despite symptoms keeping me from being able to leave the house.

Writing can be a cathatric experience... — Writing can be a cathartic experience…

I blog because it enables me from being able to meet others and making friends with such like-minded people and those experiencing similar realities to myself. I have read a lot of blogs from others also living with neurological conditions or other chronic illnesses and reading their experiences and thoughts has almost mirrored my own and reminded me that although we have different diagnoses and live in different parts of the countries or even living on different continents there are more that unites us than divides us. Blogging has allowed me to make friends and meet a wide range of different people, people who are there for me and able to lean on for advice and support perhaps even more than I had in my life before I started my blog and utilised social media as an extension of my writing. Through writing and this blog I am able to inspire others and in turn, inspire me.

I blog because it gives me a focus and an escape from being ill, despite that being the focus of the blog. Writing allows a cathartic release and escape from illness and pain. Writing, especially blog posts that are planned, rewritten and edited before being published in the blogging stratosphere takes my mind off being ill and from the symptoms that are making themselves known. Being able to write and have a focus beyond watching a film or a TV show, quietens the symptoms and allows me a creative outlet for everything that bothers me about living with a neurological condition.
I blog because it is something that I enjoy and above all, it gives me a purpose beyond that of living with chronic illness.

In Chronic Illness

A Spoonie Norwegian Adventure

June 20, 2016 4 Comments

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.

2016-06-01 12.55.02 — 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.”]

Loved the old-fashioned street lamps of the old town

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! “]