resilience Archives

At the beginning of 2018, reflecting on 2017 and the year that I wanted to live, I chose resilience as my Word of the Year.

Choosing a word, or theme for the year ahead is much less rigid than making New Year’s Resolutions. Resolutions are difficult when living with a chronic illness as they are so unpredictable. Symptoms can flare at any time. Even with extreme effort, resolutions are hard to keep, especially when we are too sick or in too much pain to leave the house.

Resolutions are hard to stick to when living with a chronic illness as we are often sick or in too much pain to leave the house. Share on X

When living with a chronic illness, it can be hard to celebrate the New Year as we can often feel that nothing in our life changes; only the knowledge that we will still be sick

Having a theme word for the year ahead, however, gives a sense of direction for plans you wish to achieve. The flexibility to adjust them when symptoms deteriorate, and you are no longer in the position to accomplish your goals. We are less likely to feel like a ‘failure’ when we are no longer able to pursue our given resolution. Instead, we are still able to aspire to our chosen word of the year, but doing so from a different direction.

Having a Word of the Year instead allows you the flexibility to adjust our goals when symptoms deteriorate and are no longer in the position to accomplish them. Share on X

What is resilience?

The definition of resilience is:

the capacity to recover quickly from difficulties; toughness

There is no question that those living with chronic illness and chronic pain face more adversity than most. As soon as we think we are starting to feel better than a debilitating flare knocks us back down. Leaving us unable to get back up again.

Resilience is a necessary skill to possess when living with a chronic illness as it allows us to overcome stumbling blocks instead of allowing them to defeat us. Share on X

It’s a quality that allows people to rise from the ashes. And the strength to overcome stumbling blocks instead of allowing failure or obstacles to defeat them. Resiliency is, therefore, an essential skill to possess when living with chronic illness and chronic pain.

Resilience Quote from Jamais Cascio | Brain Lesion and Me

When dealing with setbacks, or when the symptoms become spectacularly debilitating I retreat. No longer able to locate resilience on the map of coping strategies for living well with chronic illness. No longer able to fight, but to choose to flee, and wanting to isolate and avoid so no one can witness the pain and misery hiding in the darkness.

If there were a map for coping strategies for living well with chronic illness, resilience would be the most crtitical location. Share on X

I wanted 2018, therefore, to be the year when I learned to cultivate resilience. The way we choose to perceive our lives and the pressures that come along with it determines how we handle them. To help change my perception of my situation, I, therefore, need to adapt to how I see my disorder and how it affects me – allowing the ability to change the things that are within my control and get past setbacks without giving in to hopelessness and frustration.

I wanted to work on resilience so I would have a better handle on changing things within my control, and getting past setbacks without giving in to hopelessness and frustration. Share on X

How Have I Helped to Cultivate Resilience In My Life

Acceptance

The first step to building a happier and more successful life despite chronic illness is always acceptance. To accept this new, scary and often frustrating reality, and move forward from there. Even when moving forward feels like crawling, ever so slowly. Even when progress feels elusive, and success feels ever so far out of reach. Acceptance only then makes it easier to care for yourself, preempting your body’s needs and finding solutions.

Self-Compassion

It’s easy when we are feeling ill, and aware of all the jobs that are left unchecked on our to-do list, to feel disheartened. It’s easy to feel shame and guilt. And feel like a failure. We often think that if we only tried harder, we could have achieved it. When we are feeling at our lowest, it’s easier to remember our failures.

What we need, however, is to acknowledge and appreciate our achievements. And the accomplishments do not have to be big, even the small and everyday achievements should be celebrated. After all, when hindered by incapacitating symptoms, every success was hard-earned.

We need to acknowledge and appreciate every achievement as due to the incapacitating symptoms that afflict us; every success was hard-earned. Share on X

Living with a debilitating illness is emotionally and mentally demanding. There are times when we feel we can no longer endure such pain and hardship. Times when we think we cannot survive. It’s during these times when we need self-compassion. To acknowledge these feelings, but to recognise, we have felt this way before.

To be resilient, we must accept our long track record of dealing and surviving pain and illness. Only then can we recognise those coping strategies that have helped us in the past and implement them during future flares.

To be resilient, we need to accept our long record of dealing and surviving pain and illness. To recognise that we had felt this way before and remembered that we survived. Share on X

Remember To Be Grateful

Have you ever noticed how our brains tend to remember negative things more than positive ones? Our brains are hardwired to do so, as it served an evolutionary advantage to help us survive dangerous situations.

Unfortunately, this is now a maladaptive response, as many of the adverse circumstances we face are not life or death. To be resilient, we need to train our brain to focus on the good things we have, the experiences and people we have that make us happy and content. It can help us gain some perspective when our symptoms at their worst, and we think we won’t ever feel better.

To be resilient, we need to train our brain to focus on the good things we have, the experiences and people we have that make us happy and content. Share on X

Hope is hard to find when living with chronic illness. We are often in situations where crippling symptoms physically and emotionally weaken us. But by brainstorming potential ways to improve the current situation and ways to feel better provides a little glimmer of hope; of an improved existence. I have found writing down times when I have persevered despite the limitations I live with reminds me that I am strong enough to pursue the things I may not think I can achieve.

We need support from a compassionate and supportive tribe when in the midst of chronic illness

Get Support From Our Tribe

Friends, family and those within our online support groups are important in providing emotional support during the difficult times. For resilience, it is essential to acknowledge that we often need help, comfort, and someone to give advice. Having someone to understand and support is vital to stave off isolation. This year I have found that having someone to confined in about my fears has helped to reassure and encourage me and quell the anxieties. It has helped me be more positive and resilient as a result.

Has my Year of Resilience worked?

At the end of 2017, and going into 2018, I became lost in my suffering, and the extreme pain I was experiencing. It felt that I had lost the ability to hope, and instead was left with a yearning to give up.

After a long year of reading many books on positive psychology and those on resiliency and working on the techniques above, I am feeling a lot more positive.

Engaging in positive thinking does help change your perspective – it doesn’t cure chronic illness, unfortunately, but it does make it easier to cope and bounce back from the dark days

Every year when a new year dawns, messages of “a new year, a new you” arrive in your inboxes. Chronic illness, however, plays by no such rules, they don’t disappear because the book has closed on the year. We often wish for a new year without the burden of our conditions, but this is merely a dream with no possibility of becoming a reality.

Although we are inundated with messages of 'a new year, a new year' when living with a chronic illness, however, this is a dream with no possibility of becoming a reality. Share on X

My year of building resiliency has taught me, however, that despite the limitations that befall us, life can still be good. It has shown me that we are stronger than we often give ourselves credit for, and there are still many more possibilities that await us. I still have bad days, of course, and days where I want to give up but by using the lessons I’ve learned, I know I can get better at bouncing back. Resiliency is much like a muscle, the more you work it, the stronger it grows.

What progress have you made with your 2018 Word of the Year?

Again, we have just bared witness as tour diaries turned the page over into a brand new year. And as such, we begin to reflect on the previous year and make plans for the next. With the best intentions, people make resolutions only to break them before the end of January.

When living with a chronic illness, however, life becomes unpredictable. Every day we wake up, never knowing how our bodies are going to behave that minute, hour or day. We never know how we are going to feel one minute to the next.

As a result, making resolutions to us seems to be futile. How can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? By doing so, are we setting ourselves up for possible failure by making unrealistic expectations?

Last year, therefore, instead of making such demands on my life, which due to my fragile body I may not be able to accomplish, I come up with a ‘theme’ for the year ahead. One word that reflects how I wish to live my life and be a reflection of the type of person I want to become. The chosen word is said to be a compass to help direct us to make smart decisions as well as a guide to the best way to live life day-to-day.

It is now my third year in choosing a word of the year. In 2016 my chosen word was hope, and my word for 2017 was grace.

I had been having a hard time, however, of choosing a word to help direct how I wanted me and my life to become. Inspiration came this morning when the weakness in the legs consumed me and was unable to get out of bed. It is unfortunately not an uncommon experience for me, and such ‘attacks’ have even known to last all day. The strength and function of my legs returned a couple of hours later and was able to get out of bed. Then Eureka, the word came to me – resilience.

Resilience is defined as “the capacity to recover quickly from difficulties.” It is a quality in which a person rather than letting failure or obstacles defeat them, they find a way to overcome such stumbling blocks and rise from the ashes. When living with a chronic illness, resilience is also about learning to recognise and accept that life with an illness is much like riding a rollercoaster, with many ups and downs. Secondly, it is about learning coping strategies to acquire the strength and ability to take the ride. Then, an action plan can be put in place to help ourselves better cope with the challenges caused by chronic illness.

Some say that resilience is a quality that I possess in great supply. These people see a person who despite everything a neurological condition throws at her, she still manages to get up and get on with life. But, then again I don’t have much choice.

But emotionally when dealing with setbacks and the upheaval of coping when the symptoms are at its worse, then I somewhat of a mess! The negativity and upset that it causes impacts on my internal dialogue, my behaviours and my self-worth, and leaves me feeling depleted and flat. So, resilience is my word for the year as I want to learn to be more conscious of how life with this neurological condition is impacting me and to decide how I want to react.

Emotionally, I want to be able to bounce back quickly after confronting such debilitating symptoms. To not dwell on the negative and instead more productive ways to cope when these do occur.

I am starting my journey to resilience by keeping a ‘joy jar.’

Every day it is going to be my mission to write something that gave me joy, or that something that I managed to accomplish despite the limitations that the neurological condition places on my everyday life. I can look back on these little notes of joy, positivity and encouragement on the awful days and allow myself to remember everything that I able to do instead of focusing on what I cannot or no longer able to do.