As Illness Becomes Permanent the Person We Once Were Fades Into Oblivion
Anyone living with a chronic illness is all too aware of the constant impact that comes from the day to day persistence of symptoms such as chronic pain, and fatigue can have, as we watch the person we once were fade into oblivion. Symptoms that first started as mild, seemingly benign, suddenly become invariable. Their presence, not a result of a brief illness but a permanent and life-changing condition. Over time, these symptoms take over our body and mind. The purest pleasures that we once so enjoyed suddenly becomes unattainable. Once something like going on holiday was pleasurable and now invoked anxieties when travelling.
Perhaps it was different for me. The neurological condition that I eventually diagnosed with is as a result of a problem that arose during my birth. As such has left its permanent scar on my life since. Although the symptoms were at first insignificant have become progressively worse since. As such, I have never been an adventurous or outdoor person. Sports, for example, has never been my thing, proving myself to be more of a clumsy and uncoordinated person. Growing up, and struggling to fit in with others, I was quite happy to stay at home, tucked away in my bedroom to read or watch a favourite film.
Preferring the Safety of the Familiar
Even when I ventured on my own to attend university away from home, I eventually returned after several weeks. I found myself unable to cope away from the comfort and safety of familiar surroundings while navigating mysterious and unexplainable symptoms. Although never a strong passion of mine, I always enjoyed travelling. Whether it be visiting other parts of the UK or soaking up different cultures abroad.
However, as time passed, these symptoms grew in intensity. The culmination of which was preventing me from living life. Anxiety, pain, fatigue, and vertigo were taking over my every day, slowing becoming my new normal. Endless trips to see consultants and specialists proved fruitless. Until the diagnosis of a neurological disorder. A burden that I must now carry with me wherever I go.
Were my days of travelling finished?
When the symptoms began to deteriorate, I thought the days of travelling was over. Feeling the constant effects of such debilitating symptoms, it seemed safer to stay within the comfort zone that my illness has enforced. Afraid that like my illness, this limiting comfort zone is permanent. My world had become limited, whereas the symptoms became more pronounced and took a more significant part of my life.
"Feeling the constant effects of such debilitating symptoms, it seemed safer to stay within the comfort zone that my illness has enforced. Afraid that like my illness, this limiting comfort zone is permanent. " Share on X
Life Begins at the End of Our Comfort Zones
But there came a time when I wanted to see more of the world. Thanks to funding from our local authority, I was able to employ a carer to take me out for a few hours a week. As I began to visit new places and learned to push through the effects of such debilitating symptoms, my confidence increased. It was only then I decided to go on holiday for the first time in I can’t remember how long. Due to the severity of the dizziness, vertigo and perceptual difficulties that come along with them, we decided to try a cruise to avoid the long waiting in an airport terminal.
Lessons Learned From Cruising
Last month, I returned from my fourth cruise. And ever since, I’ve come to reflect on my experiences of travelling while living with a long-term health condition. Before the trip, I had been experiencing increasing neuropathic pain in the legs. The excruciating pain often had me sobbing with the intensity of the torment it inflicts. Pain so severe it even made me physically sick as a result. It, unfortunately, continued throughout the cruise. The pain forced me to submit to the painkillers, prescribed to me in case of such debilitating pain. It, however, only added to nausea I was already experiencing due to the motion of the ship.
Where we are is irrelevant; pain is pain. It will be there no matter where we are
But it made me realise, that location is irrelevant.
Pain is pain.
Symptoms are symptoms.
"Where we are is irrelevant. Pain is pain. Symptoms are symptoms. They will be there no matter where we are." Share on XThey are going to occur no matter where we are. Being crippled, writhing in pain, crouched over the toilet at home is no different from being debilitated by pain in the cabin of a cruise ship. Yes, it’s easier to manage and plan for symptoms when in the security of familiar surroundings but can be achieved even when on the move. It just requires careful planning, packing essential items that will help manage symptoms when they do occur.
"Yes, it's easier to manage and plan for symptoms when in the security of familiar surroundings but can be achieved even when travelling. It just requires careful planning." Share on XAs this realisation became reaffirmed after each trip I took, it became easier to depart on further cruises. As flares occurred before a trip, however, inevitable doubts crept in. Doubts which questioned whether I could cope with travel while enduring such severe symptoms. But as the holiday was already fully paid for, as Queen once sang “The Show Must Go On.”
Over time, I have evaluated the limits that the neurological disorder and its symptoms have on my life and adapted my travel as needed.
"Over time, I have evaluated the limits that the neurological disorder and its symptoms have on my life and adapted my travel as needed." Share on XFor the Love of Cruising
I know that places with high ceilings trigger severe episodes of vertigo, hence why cruising has become so appealing. The trembling of my legs and the lack of warning before they give way means that I am unable to walk far. As such I have particularly enjoyed the Norwegian Fjords as many of these ports are within the towns themselves and they tend to be easy to navigate by yourself. Also, cruise companies offer some lovely excursions and all itineraries details the total length of the tour and how much activity (like walking) there is so that you can choose one best suited to you and your particular needs.
"For successful travel, we need to evaluate our limits and adapt our plans accordingly." Share on X
As chronic pain is a constant companion of mine, before our cruise, we’d booked a trip to the incredible Blue Lagoon in Iceland. The warm mineral water helps melt away pain and stiffness. And it worked! The whole time we were in the beautiful blue water, my pain levels markedly decreased. We booked a couple of other trips in several of the other ports on the itinerary. All under four hours and had minimal walking involved but still allowed me to appreciate the fantastic sights that Norway and Iceland offers.
The Anxiety of Being Outside Our Comfort Zone
Before a trip, of course, the monster that is anxiety rears its ugly head. I begin to question whether I am strong enough to cope with constant and debilitating symptoms while travelling. However, I have survived and at times even thrived even while away from the safe and familiar. Although there were difficult times, I got through them. I even became stronger and resilient as a result. I since, have been able to reassure myself with the mantra “You can do this. You’ve been through worse, and got through things you thought you couldn’t but did.”
"Despite the difficult times, travelling has helped me become stronger and more resilient." Share on XYou become resilient when the intense swelling of the sea, constantly upsets your sense of balance, making it difficult to walk. And you become resilient when crippled with severe pain that feels as if it will never end. You’re resilient for enduring continuous and unrelenting symptoms and still getting up and enjoying all a holiday has to offer.
The Great Unpredictability of Illness is Much Like The Great Unpredictability of the Weather
This year, reminded me of the great unpredictability of the weather. Unfortunately, high winds prevented the ship from docking in two of the ports scheduled on our trip.
It told me that like the weather the symptoms of chronic illness is also unpredictable. But as it reminded me, unpredictability doesn’t have to ruin fun or enjoyment of plans; it just means finding ways around the restrictions like the weather or our symptoms.
As much as travelling can be stressful, and that anxiety will be a part of future travel plans, I pledge not to let that stop me. I believe that travel is something that has me happier, stronger and more resilient. Despite the limitations that the symptoms have on my life, I still want adventure in the great wide somewhere.
"Despite the limitations that the symptoms have on my life, I still want adventure in the great wide somewhere." Share on X
