pacing Archives

Sheryl, as well as sharing her own stories about living with a chronic illness, is a great support to other bloggers and writers. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. I’ve decided to take part in this month’s Link Up Party, using the prompts to help others gain insight into travelling when living with a neurological disorder.

Travel and visiting new destinations is one of the great joys of life.

Whether it be for a few days or several weeks, travel allows us to escape our lives, allowing the pursuit that of which is important to us. Or the freedom to seek out activities that we have always wanted to try but never found time to accomplish.

Living with a neurological condition, however, can make travel exceptionally difficult. Living with constant and unrelenting symptoms, especially those which can be unpredictable, can often force you into a bubble; a little prison where we’re happiest in the safe and familiar surroundings of home. Home is secure, like a security blanket. Although the symptoms are incredibly unpleasant, it is easier to endure behind the closed doors of our homes. It’s safe, but it’s not living, is it?

"Our symptoms are often easier to endure when at home amongst the comfort and familiarity of home." Share on X

If we are to endure the persistent and tenacious symptoms everywhere, then why not do so amidst the unknown and breathtaking scenery of foreign lands.

We are sick, and thus can be ill anywhere, so why not travel?

If I am to be sick, then I can be sick anywhere.

That’s why I decided to step outside the comfort zone of my familiar surroundings. I chose to live. To live with the symptoms of this neurological condition instead of merely enduring them.

We have found cruising the most accessible and enjoyable way of travelling while in the company of a neurological disorder. And so a love of cruising began.

[Tweet “I have found the cruising offers the most accessible and enjoyable way of travelling.”]

cruise ship anthem of the seas docked — Anthem of the Seas

That is not to say, that it has become any straightforward, however. There is always some anxiety and trepidation before embarking on our travels. The fear of the unknown; the unknown of when we will experience a severe flare in our symptoms. The uncertainty of whether we will manage to leave our hotel room. The fear that pain and other symptoms will dictate our travels just as it does every day while at home.

Currently, I have been experiencing a severe chronic pain flare. So intense, that I have found myself crippled on the floor of my bathroom, retching with the intensity of it. So the worry of travelling while amid such crippling pain began.

Lesson Learnt When Travelling: My Strength and Resilience Despite Illness

However, I realised that to defeat this recent attack of chronic pain and the accompanying anxiety; I need to look back and remember the previous times I have been on a cruise. And need reminding of the coping techniques that helped me endure chronic pain, and the other problematic symptoms while being in uncertain and unfamiliar surroundings.

This year marks my fourth cruise. By looking back to my past adventures at sea, I can identify what helped manage and control my symptoms before so that I can put these same arrangements in place. Already, this has involved an appointment with my GP for a prescription for strong painkillers to manage the chronic pain while away from home and motion sickness tablets. Not only do they help ease nausea caused by sea-sickness, but they can also help reduce the severity of the dizziness and attacks of vertigo that I frequently experience. And with chronic pain comes painsomnia and so I have bought lavender and chamomile pillow spray to help me sleep.

"By reminding myself of the strategies that helped manage my symptoms, I can put these in place again."] Share on X

feather down lavender and chamomile pillow spray — Lavender is one of my favourite essential oils to help me sleep when I’m experiencing the dreaded painsomnia

Lesson Learnt When Travelling: The Power of Pacing!

When living with a chronic illness, one of the critical techniques in our self-management toolbox is pacing. Chronic illness affects our energy levels, and thus we only have limited battery life. By learning how to space out activities, we can learn to stay within the limits of what our bodies can handle without exacerbating our symptoms. Or before running out of battery life altogether.

Pacing, therefore, is an essential coping technique when on holiday. And away from our daily routines and behaviours, especially as many holiday activities may deplete our already exhausted battery levels. Jennifer, from The Health Sessions, recommends for every active-day we follow this with one day of rest. Doing so allows our bodies to recover between energy-consuming activities. When on a cruise, however, pacing can be awkward as we are not in control of the itinerary. It is crucial that we are mindful of our limitations and not to exceed them, spoiling the remainder of our relaxing time away.

"For every active day follow this with one day of rest to help manage our energy." Share on X

battery life low mobile phone — With fatigue being a common symptom of chronic illness, it means that we only have limited battery life and one which gets depleted quickly if we don’t pace ourselves

Lesson Learnt When Travelling: The Need For Surrendering to Symptoms

As much as pacing can help manage our symptoms, however, we are more than likely will still experience flares. If so, we need more than ever to surrender and take care of ourselves. Yes, even if it does mean missing out on specific events and activities that our holidays may have on offer. I know from experience that this can be difficult, and we tend to criticise ourselves for missing out. Instead, we should be congratulating ourselves for even managing to get away from the security of home. And for not letting chronic illness make a prisoner of our own lives.

Travelling with chronic illness can sometimes mean surrendering to it; finding ways to make whatever we’d like to do on holiday manageable for ourselves and our weak bodies.

"It is important to find ways to make whatever we like to do on holiday manageable for ourselves."] Share on X

Lesson Learnt When Travelling: To Go With The Flow

Travelling with chronic illness also means learning to go with the flow.

Change and not knowing what to expect can be difficult when living with a chronic illness because it’s the not knowing what to expect that makes it much harder to anticipate, plan and manage our symptoms. Therefore, perhaps not making concrete plans may be of some use when on holiday and instead take part in the activities and events on offer when we know we can enjoy them.

"Not knowing what to expect makes it harder to anticipate, plan and manage our symptoms." Share on X

Travelling Helps To Improve Ourselves

It may sound that travelling while living with a neurological disorder is more trouble than it’s worth. In my mind, however, and despite all of the problems, it isn’t. Travelling offers the opportunity for us to improve ourselves. Whenever we venture outside our comfort zones and visit places we’ve never been before our world expands and our eyes open to new possibilities like never before. Travel, especially when living with a life-long condition allows for us to learn things about ourselves, our needs and capabilities that we may never have known otherwise.

In my four years of cruising, I have learned that the more I do so, it also improves my aptitude of being away from home, despite how uncomfortable it can make me.

Chronic illness can rob us of many things, but we should not let it rob us the enjoyment and excitement of new adventures.

"Chronic illness should not rob us of the enjoyment and excitement of new adventures." Share on X

Link Up Party with A Chronic Voice: Lessons Learnt When Travelling

Well, this is my first post for well over a month. I apologise for my long absence and lack of writing, but unfortunately, once again I have been battling rough seas as a result of the symptoms associated with my neurological condition.

Take my legs, for example, the trembling in my legs at times have felt so violent that everyday activities such as standing and walking have been particularly difficult.

Crippling fatigue has left me unable to function, and constantly finding myself falling asleep throughout the days but still finding myself with no energy no matter how much sleep that I had gotten!

Whilst experiencing these bad days, however, it made me realise the importance of pacing. Those of us living with chronic illness often report experiencing an increase in the severity of symptoms such as pain, fatigue, dizziness and cognitive difficulties after physical activity, and in particular when these activities have resulted in overexertion. Doctors have named this phenomenon ‘post-exertional malaise’ and although is often reported in relation to myalgic encephalomyelitis (ME, or CFS) many spoonies living with a variety of different chronic conditions also report experiencing post-exertional malaise.

Preventing post-exertional malaise therefore largely depends on limiting activity to a level that will not exacerbate symptoms.

Pacing oneself is not always easy our limits do not have clear, unchanging boundaries, in other words, we may find we are able to tolerate certain activities on some days but not on others. Despite this, however, pacing is often regarded as the most appropriate self-management strategy that helps us remain as active as possible whilst avoiding overexertion.

On bad days, therefore we need to limit our energy expenditure to the energy we have available.

Sounds easy right?

But in reality, it is far from easy, as is often difficult to know the amount of energy we actually have to spare, and especially difficult when living with a condition in which the severity of symptoms fluctuate, like mine. Despite this, however, the importance of pacing and not overexerting oneself to avoid a relapse of symptoms is a lesson that I have been learning the hard way.

Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren't for our chronic conditions — Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren’t for our chronic conditions

Take, for instance, a trip to a retail park that I took with my carer. A retail park with a plethora of shops to peruse at length. This particular retail park is quite large and due to the severity of the dizziness of late, it was a difficult trip to undertake but I was determined to push through the uncomfortable feelings and enjoy a day away from the prison that my house had become due to my condition.

Regular readers of my blog will know that when the dizziness is particularly bad as it has been of late, being in my wheelchair is extremely difficult for me and can often make it worse. As a result, I abandoned the wheelchair and used my two very wobbly legs to make my way around the shops.

The trip was actually a huge success, as after a difficult start due to unrelenting symptoms but despite this and due to my sheer stubbornness and determination I managed to walk around the entire complex.

Retail Park just like the one I managed to visit - take that brain stem lesion! — Retail Park just like the one I managed to visit – take that brain stem lesion!

For me, it was a huge achievement, and although I was proud and enjoyed the day immensely, the days that followed were extremely difficult due to the severe symptoms that arrived days after the shopping trip. Intense pain, severe trembling in the legs, dizziness and unrelenting fatigue arrived in full force just hours after arriving back at home. And why? I had exceeded my energy limit and overexerted my body’s limit. I had failed to listen to my body and did not use the wheelchair when I probably should have. And this is not the only example of times when I have failed to listen to my body which resulted in the increase of my symptoms.

Living with chronic illness is often like surfing. When living with chronic illness, we often find that severe and unrelenting symptoms including pain, dizziness, and fatigue can knock us from being able to successfully live life, much in the same way large and violent waves swipe surfers from their surfboards into the deep waters below.

To live a successful life despite chronic illness, therefore, we must learn to ride the waves of life, learning to use self-management strategies to balance our lives against our conditions, and not let ourselves be overwhelmed by the waves that are our symptoms.

[Tweet “To live a successful life despite chronic illness, we must learn to ride the waves of life.”]

A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life — A new bracelet to remind me to ride the waves of chronic illness and to not let it stop me from living my life

So let us all learn to ride the waves of chronic illness and live our lives despite the barriers that it can create.

To not be overwhelmed by our difficult circumstances and create a life that although may be different from the one we envisioned, be meaningful and joyful.

To not be defined by our condition but rather be defined by the successes that we achieve despite it.