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…

In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’. In the book, she introduced the now famous ‘Five Stages of Grief’. Her theory suggested that there are five stages of adjustment after a loss, which are:

Denial
Anger
Bargaining
Depression
Acceptance

The theory described the five stages of grief concerning the mourning of a loved one. However, these five stages have also been used to describe many areas that involve a loss.

These five stages of grief can also apply to a diagnosis of a chronic illness or the onset of a progressive disability. Mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis. And for the activities that we once enjoyed but which may be prevented by the symptoms of the chronic illness or disability.

[Tweet “The 5 Stages of Grief can be applicable when diagnosed with a chronic illness…”]

An example of these stages in action can be as follows:

Denial

We immediately are in denial of the new situation and cannot accept that it is true. Regarding chronic illness, we may question the doctor and ask whether he is confident that the diagnosis is correct. A request may be made for further investigations as we cannot accept the diagnosis as fact. We may also not be open to new medications or treatments suggested as that would mean the condition is real.

Anger

Like many others, anger is a normal feeling when living with chronic illness. We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. We are often angry at people around us who are still able to do all the things that we are no longer able to do. Anger is one of the five stages that those living with chronic illness reverts to, especially when symptoms are particularly severe.

[Tweet “Anger is a stage those living with chronic illness reverts to, especially when symptoms are severe.”]

Bargaining

Although anger stays for a while, we eventually progress to the third stage which is bargaining. Often, when living with a chronic illness, we become lost in a world of “What if” and “If Only” statements. We want to return to the life we had before illness, so we attempt to bargain with our bodies.

We promise that we will take all our medications correctly, and keep to a healthy diet in exchange for the condition to disappear. A promise is made to do anything in exchange for a cure and to be able to return to a normal life.

[Tweet “When living with a chronic illness we become lost in a world of “What If” and “If Only” statements.”]

Depression

As times passes; we slowly realise that bargaining isn’t working. As there is no sign of a cure or a return to our old life we begin to lose hope. Often, we slide into a depression. The depression isn’t a sign of a mental illness however but a response to the loss of our previous life. We turn inward and withdraw from life, and get stuck in a fog of sadness, despair and hopelessness.

[Tweet “As there is no sign of a cure or a return to our old life we can slide into depression.”]

Acceptance

The move into acceptance is a slow and gradual process. To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.

However, this is not a single process. These five stages of grief are linear and one in which we often regress to previous steps. The need to work through them all over again, especially at times when the condition gets worse. As we worsen we return to the first stage of denial and we need to work through all the stages just like we did after the initial diagnosis. As our health deteriorates, we are essentially mourning the loss of another piece of ourselves.

[Tweet “Acceptance is about finally recognising and acknowledging the permanence of chronic illness.”]

The importance of acceptance can be brilliantly summed up by a famous quote by Joseph Campbell:

This post is about acceptance – to acknowledge the changes in our situation and declining health. It is not about being completely fine or deliriously happy about the illness or disability. Acceptance is about finally recognising and acknowledging the permanence and reality of life after diagnosis.

To learn to readjust to our new reality we need to embrace the life we have now. Acceptance is not about giving up.

[Tweet “Acceptance is not about giving up but to learn to readjust to our new reality.”]

I thought about the ‘Five Stages of Grief’ recently after a day out with my carer. As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.

Last week, my carer commented on how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more. A reason for this is because I am in the wheelchair, I am not always on edge that my legs will give way, or on the days when the weakness is severe, I am not waiting for my legs to collapse.

However, as I also live with constant dizziness and regular bouts of vertigo and as a result of the continual movement while in the wheelchair, it was challenging for me to use it. So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?

accepting the need of a wheelchair when living with a chronic illness — Accepting the need for the wheelchair has made going out so much easier and more enjoyable

One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair. Perhaps, I have finally moved through these five stages and now accepted my new reality. Before, I became worried not only about the wheelchair’s effect on my vestibular system but also with the judgements of other people. That however no longer is a concern of mine and happy to be in the wheelchair.

Perhaps, it is much easier to live with a new situation when we have reached acceptance. We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon our lives.

[Tweet “It is easier to live life despite the limitations of living with a chronic illness when we have reached acceptance.”]