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.
How does the old saying adage go? What a difference a year makes. And, my recent experiences can only substantiate this.
Regular readers of the blog will remember that last year, I experienced my very first cruise and that unfortunately, it did not go as well as my parents and I had hoped.
The symptoms associated with this neurological condition were consistently present and remarkably severe that it affected my enjoyment of the holiday and also left me unable to disembark the ship and see the beautiful places that I was so looking forward to visiting.
Fast forward a year (okay more like a year and a half), and I am back from yet another cruise! Why go on a cruise when the first one did not go well, I hear you ask.
Well, the large part of the reason why I decided to go another cruise, is that I refuse to let the neurological condition that I live with have any more control over my life than it already has. I came across, a perfect quote that sums this up brilliantly; this quote says “Life begins at the end of your comfort zone.”
And it is true, if we only stayed within the confines of our comfort zones then we would never know what we can be capable of, or what we can achieve when given a chance.
[Tweet “If we only stayed inside our comfort zone we would never learn what we are capable of.”]
The symptoms that are as a result of the brain stem lesion already makes life difficult, for example, visiting certain types of places such as those with high ceilings and fluorescent lighting are very challenging for me as they increase the severity of symptoms such as dizziness and vertigo.
As a result, I do not wish for my condition to stop me from doing anything else that I want to do, including taking trips abroad.
Flying and therefore requiring to spend hours waiting in an airport would not be compatible with my symptoms so consequently, a cruise offers an alternative for me to be still able to travel. Furthermore, the rational side of me also realised that although I found the first cruise particularly difficult, it does not necessarily mean that I would have the same experience on future cruises.
Back last year, just a few months after arriving back from the Mediterranean, my parents and I booked a second cruise with Royal Caribbean on their brand new ship Anthem of the Seas travelling this time around the Canary Islands (as well as stops in Spain and Portugal). And I am so glad that I did!
This cruise went much better than the last one and even managed to get off the ship twice, leading to spending a few hours perusing the streets of Tenerife and Madeira.
The process of disembarking the ship and then having to find our way to wherever we wanted to visit was not easy especially giving the severity of the symptoms, but I still managed to push through and achieve something I did not think I could do. To some, getting off at only two stops may not seem like much, but fellow spoonies would appreciate the enormity of this feat, especially when battling constant and unrelenting symptoms.
Anthem of the Seas is a fantastic and beautiful ship, and Royal Caribbean has seriously gone hi-tech. Before embarking on the cruise, we bought an internet package, and was impressed with the speed of the bandwidth, enabling me to stream movies and television programmes on my iPad occupying my time when fatigue set in (which was a lot!.
The WOW factor did not stop there, however; all over the ship, there was amazing artwork to marvel at, often feeling like Alice landing in Wonderland. What I love about Royal Caribbean, is the thought that has gone into the design of their ships; all public areas are fully accessible and have automatic doors making it easy for those in wheelchairs to be able to navigate their way around the boat unaided.
The food was also stunning and particularly loved having a wide variety of choice of where to have dinner. We sampled the delights of the majority of the complimentary restaurants onboard but spent most nights dining in the American Icon Grill. One night, however, we chose to pay extra and ate at Jamie’s Italian where the food was delicious and the staff attentive and friendly.
The highlight of the cruise for me, being a fan of Queen was seeing We Will Rock You, which was incredible and rivaled any West End show. My Mum and I also paid extra to use the facilities in the spa, which included an aromatherapy steam room and sauna, as well as the use of hotbeds which not only did I find incredibly relaxing but also really helped ease the often excruciating pain in my legs.
Beautiful sunset
Strange though isn’t it? Last year, I was unable to get off the ship and generally found the whole cruise experience extremely difficult.
A year on, however, and despite my symptoms not improving in that time I found this holiday much more comfortable, even managing to push the boundaries of my comfort zone.
Why is this? Perhaps the reason is that during the past since the first cruise I have managed to push myself further, expanding the perimeter of the small world that my neurological condition has forced me inside. Examples include conquering going to the cinema, a pastime that I used to love but is now extremely difficult for me as a result of my severe and unrelenting symptoms and as a result started to avoid. By pushing myself to go to places and placing myself into situations that increase the severity of my symptoms, and achieving staying in them, reinforces the belief that I am stronger than my condition and can get through stressful situations.
[Tweet “By going beyond our comfort zones shows us that we are stronger than our illness has us believe.”]
Or perhaps I have reached a new, deeper stage of acceptance.
Accepted the reality of the diagnosis of a long-term neurological condition – that is not to say that I have given up and surrendered to the disorder but rather let myself go of the suffering that came from continuously fighting against the symptoms and the hold that they had over my life. I have accepted that I will always have difficulty with certain situations and the majority of things will not be easy for me, but what I can control is my reaction to them, and by doing so I can learn to be in control of my symptoms instead of them controlling me.
[Tweet “Acceptance has helped me learn to be in control of my symptoms instead of them controlling me.”]
Believe. Love, Live, Dream, Inspire – some positive words advice from Royal Caribbean
In the end, I had to accept the reality of the symptoms; accept the long-term presence of them in my life. And by doing so, I no longer fought the presence of the symptoms but acknowledged their present existence at that moment. I have freed myself from the prison of fighting against the symptoms, and avoiding certain places and situations has placed me in.
By accepting the reality of life with a long-term condition surprisingly made it easier to cope with the symptoms and all of the ups and downs as a result of living with a chronic illness. I was able to find little coping strategies that helped minimise the effect of the symptoms and help me stay in control of the symptoms rather than the symptoms controlling my life.
Of course, there are days when it feels that the symptoms still have control over my life but by accepting the reality of life with chronic illness, getting through the bad days is easier than before.
Above all, going on holiday on the cruise of a lifetime has made me realise that being diagnosed with a chronic illness, or disability does not spell the end of our lives or even our dreams.
Yes, perhaps the route to which we can reach our goals and dreams may have to change, but we can still reach that final destination. Chronic illness should not mean the end our dreams; we can still follow them if we took a leap of faith.
[Tweet “We can still achieve our dreams and ambitions if only we took a leap of faith.”]
It is this realisation that I came to while on holiday – if I took the easy option and decided not to go on the cruise then I would never realise the strength and control that I can have over FND and its symptoms. And if it weren’t for that, then I would never have the opportunity to visit a country that I have wanted to for so long – Norway!
Yes, we have booked yet another cruise for next year to the beautiful and amazing country that is Norway. And this trip I can look forward to with excitement and positivity instead of anxiety and trepidation.
So all of you reading this – don’t give up on your dreams, believe me, you can still achieve them despite the challenges in your way.
Around two weeks, I made pre-arranged plans with my personal assistant to go to the cinema.
On the morning of the day of the arranged trip, I found that the symptoms that plague my everyday life were dialled up to the maximum volume on my personal symptom-o-metre.
On these days, I would usually cancel such plans and make the decision to go somewhere safe and familiar – surroundings where I feel comfortable no matter how bad I am feeling, and which are just as comforting as my own home.
Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!
On this day, however, I made the decision to make the journey to the retail park, which our regular cinema is attached, and see how the day was going to pan out. I made the decision, not to make plans, but instead, if I made it to the cinema than great, however even if I wasn’t well enough to attend, I still had a lovely day away from home, browsing stores and boutiques and indulging myself with a special lunch.
The cinema, as expected did not happen thanks to the unrelenting symptoms that were severely afflicting me, particularly the trembling in my legs that did not allow me to walk around the entire retail complex.
At first, I was thoroughly disappointed in myself and the condition with which I live for wrecking my plans in the overly critical way that I often am in regards to myself.
Although at the time I felt that I lost the battle to my neurological condition, I have come to realise however that this is not the case. I may not have made it to the cinema, but I did still manage to push through the severe and unrelenting symptoms that I was experiencing and go to a place that can often make me feel uncomfortable due to the size of the place which can often worsen the dizziness that is part of my chronic illness package.
Perhaps by winning certain battles in our lives with chronic illness, we can find ways around certain problems to win the battle another time
Chronic illness often wins many battles in our lives; however, it does not win all of the battles. There are many battles that we win; many times we prize the triumph away from the hands of chronic illness and are victorious over defeat.
Think about the last very bad day you had due to chronic illness…
Did you still manage to get out of bed?
Go for a shower?
Do small chores around the house?
If yes, then congratulations, you triumphed over your illness.
It’s a small victory, but a victory nonetheless. We need to celebrate and appreciate these small accomplishments as just that – victories over our illnesses that already take so much from our lives, and accomplishing such feats can often feel that we are taking back some control that chronic illness can steal away.
That is partly the reason for choosing to go out when it would have been easier to stay within the confines of the four walls where I feel safe when the symptoms are it’s worse. I did not want my neurological condition to control my life and dictate how I spend my time. I want to enjoy life, and not feel that I merely surviving through life as a result of living with a neurological condition. I want to enjoy life and be happy instead of being stuck inside the same four walls with only my symptoms for company and hoping for better days ahead.
Furthermore, the triumphant day out also taught me that I am a lot stronger than I think I am; and that the symptoms do not have to have as much control as I often choose to give them. That I am able to take risks and go to places that I did not think I could, as Ophelia says Shakespeare’s, Hamlet:
we know what we are, but know not what we may be
We know what our lives are with chronic illness and as an extension who we are because of it. Perhaps we need to step out of the box that chronic illness imprisons us into to find out what our lives can be like, if and when we choose to take back control that illness removes from our lives. Who we can be when we refuse to let illness have the main spotlight in our lives.
Imagine walking down a busy street. Look at the faces of the people walking past you in the street. Every one of those people will currently, or at some point in their history has faced a battle. One of them may be living with a battle that I currently face; a battle of living with an invisible illness.
Invisible Battles, Known Only To Those Fighting Them
Some of these battles may be visible, detectable to others, eliciting empathy and compassion. Other conflicts, however, are invisible; concealed from everyone else, like a deeply hidden secret – a struggle known only by the person carrying the burden of the fight.
Be kind; for everyone you meet is fighting a hard battle.
I am one of those people who is fighting an unseen, invisible fight. If you were to see me, you would never know that I have a neurological condition — the only signs being when I am staggering along with my crutch. Or on the days where weak legs confine me to the use of a wheelchair, even then I am met with stares silently asking why I need such aids.
For Me It is Not An Invisible Illness, It Is My Life
The personal fight I face as a result of my neurological condition although may not be visible to others, for me, however, is very real. For me, it is not an invisible illness; it is my life. Every step is a struggle, with legs trembling so much that it feels as if they will buckle, although no one can see. For others, the world is still, unmoving.
The world in my experience, however, seems off-balance. As though everything is slightly tilted. At other times it seems as if there is constant motion. Every day I fight against fatigue and for the ability to do everything that everyone often takes for granted. Such as being able to go shopping, take a shower or cook a meal for the family.
“Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them.”
Every day is a battleground between myself and my body. Like with any battles in history, there are times I am forced to surrender. Such as those days when my legs are so weak. Or the dizziness so severe that I am unable to get out of bed. The days I am forced to surrender to my condition and stay confined to my bed. That’s the thing about living with a chronic illness; it is often a balancing act between surrendering to our symptoms and fighting against them.
It is not just the symptoms that we have to fight. We also have to fight against the judgements of other people regarding our long-term health conditions. At the start of our chronic illness journey, people greet our new circumstances with understanding and compassion, friends and family make allowances for our limitations. As time passes, however, the understanding and compassion dissipate, replaced with frustration. Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.
The grievance at the chores still left untouched as illness still will not allow me to attend to them. My parents, although supportive and understanding will sometimes feel embittered at finding certain chores untouched. Some days have to be waived for a day on the sofa due to debilitating and unrelenting symptoms. And they are unaware of this as to look at me, you only see a healthy woman.
To Live With An Invisible Illness Instead of Surviving
It may seem that the neurological condition takes a significant amount of space in my life; it, however, does not own or control me. Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life. There are certain things that I am unable to do because of this condition. Particular baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.
A profound quote from Tangled!
This unseen condition may fight for control for every facet of my personal life. Now, however, I have chosen to fight back. Although I have not won control for every area of my life, I have elected to manage aspects of my life that I do have control over. I have chosen to live side by side with my condition instead of merely enduring life with it.
I choose to live rather than simply survive.
‘Fight Song’ is a song that is on my self-care playlist
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…
