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 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.
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 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.
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.
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.”]
Leaving Olden
Some famous Norwegian trolls!
A photograph of Olden and its river
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
The quaint old town of Olden
Look more trolls!
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! “]
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.
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.
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
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.”
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…
For a couple of days this week, imagine my surprise that I awoke to no trembling or even pain in my lower limbs. None of the severe shakiness that makes me feel that I am balancing on jelly. No sign of the often debilitating pain that feels as if my legs are being squeezed in a vice, and which makes me wish that I could tear my legs off and discard them as many young children do with their dolls.
For these couple of days, my immediate thoughts after waking and realising that neither of these disabling symptoms had returned were “So that’s what normal feels like!” I had forgotten how it felt not to experience disabling pain and trembling in the legs. They had become such a part of my life, that without it, it felt almost strange (although was welcome if it was only for a couple of days!
Actually woke this morning with no #trembling in the legs and immediately thought ‘So that’s what normal feels like!’ #ChronicLife
However that it is not to say I have always experienced these particular troublesome symptoms or to this degree as I haven’t, although I had struggled with them for so long now I am unable to recall when they first started. That’s the thing with living with a chronic illness; the unusual and disabling symptoms soon become the norm and part of our daily lives. Life with chronic illness slowly become our new normal.
[Tweet “That’s the thing with chronic illness; the abnormal slowly becomes our new normal.”]
A lot of people have experienced some moment in their lives when it feels that their lives have been divided into a before and after, whether it be through a bereavement, injury, illness or some other life event. A moment in their lives where they have to adapt to a new normal, the lives which they once knew becomes a chapter in someone else’s story.
Image: Google
Perhaps what is most difficult when living with a chronic illness is that we intermittently experience a glimpse into our lives before illness struck and its onset of debilitating symptoms. Times when our symptoms are mild, or even nonexistent and reminding us of our old normal.
[Tweet “The times when our symptoms are mild, we are briefly reminded what our normal looked like.”]
However, this preview of our ‘before illness’ soon ends and again we’re back to our new reality of pain, fatigue and the other symptoms that make up our conditions. It’s we have a brief glimpse into an old, familiar room before a door being slammed shut before we had a chance to step inside and familiarise ourselves with our past surroundings. A preview of an old life that although can be seen it is out of our grasp.
When given a chance to experience aspects of our past life, however, what is most surprising is that it no longer feels normal, it feels odd as if that life no longer belongs to us. When living with chronic illness, the abnormal soon becomes the norm and without us even realising, we forget about our old normal. When experiencing our old normal, therefore, it feels unnatural and strange, as if that life no longer fits.
The new normal just becomes normal; erasing our past life and who we once were paving the way for life with a long-term condition and who we are now.
During my absence of blogging, I have once again been indulging in my love of books and burying myself in the pages of the books that have been on my to-read list for some time. Prior to this, reading had been somewhat problematic due to the severe dizziness and visual disturbances, that I have been experiencing, and for a while it seemed that my love of reading was another thing that my illness had taken away from me.
However, although the dizziness is still bad and still experiencing visual disturbances, they have eased enough for me to start reading again. One book that I have recently read was the excellent and highly emotional read, ‘The Memory Book’ by Rowan Coleman.
The gorgeous cover of a wonderful and moving book
The book tells the story of Claire, a beautiful, intelligent and vibrant forty-something. Mother to two wonderful children, Caitlin aged 20 and Esther aged 3, and married to Greg, the man of her dreams. Claire, however, is also living early onset Alzheimer’s Disease, and after watching her own father overcome to the disease, Claire is all too aware that life for her and her family will never be the same.
Greg, her husband then buys her a beautiful notebook, which becomes ‘The Memory Book’ in which Claire and other members of her immediate family to record their own personal memories of the life that they had together, as well as mementos that have had significant meaning in their lives. The book is not only for Claire to use as a memory aid but also for the entire family to cherish and remember the life that they all shared together.
The story made me think of my own life with chronic illness. Living with a variety of symptoms such as pain, fatigue, dizziness as well as the problems with my legs, all associated with the neurological condition I live with, I have no need for a book to help me remember my life with my condition. However, often when we are struggling because of not only the physical effects of illness on our bodies but also the psychological effects on our minds, we are often however in need of positive reminders of life outside our bodies and outside the walls that chronic illness creates.
So, how about creating our own gorgeous notebooks, but instead of filling them with memories of our lives. we create pages of everything that help us to remain positive, mementos of happy times and everything else that makes us happy and fills our lives with joy!
Example of a beautiful memory book on Pinterest
Such items could include favourite uplifting and positive quotes and affirmations that bring comfort during difficult periods of your life. Postcards, photographs and other mementos from holidays of a lifetime. Letters and cards from friends and family including words of love and encouragement. Lyrics from your favourite song. Objects and pictures which evoke positivity and happiness or are reminders of achievements that have been gained despite illness; reminders that we are more than our illness.
Anything and everything that will help keep your spirits up during difficult periods in your life, such as during bad flares or relapses due to chronic illness.
Much research has shown the positive effects that writing and keeping a gratitude journal can have on our health, and in my opinion, a memory book like the one I have described is a natural extension of that. A personal beautiful, hand-crafted positive memory book to look through when living with chronic illness feels like too much to handle, I think will help us bounce back from negative emotions and strengthen our happy memories.
The finished positivity book is not the only benefit, but the ability to become creative to produce something meaningful can also be therapeutic when living with the effects of chronic illness as it allows an outlet for all of our thoughts and feelings regarding life with chronic illness and the new limitations that it has placed in our lives.
I have been wanting to create my very own scrapbook for a while, to fill with all the beautiful quotes and affirmations that I have found during my days out with my carer, as well as the ones sent to me by other spoonies and after reading ‘The Memory Book’ it has inspired me to start my very own (positive) memory book!
Now I just need to buy all the materials I may need…
If you were to create your very own positive memory book, what items and mementos would you include? Have any ideas I could use for my own book, then shoot me a message as unfortunately I am not very artistic or creative so would like to make it as easy as possible! And for all you book-worms out there, then I would really recommend ‘The Memory Book’ by Rowan Coleman, it’s a wonderful read…
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.
