Chronic Illness Archives – Page 8 of 89

In Chronic Illness

34 Things I’ve Learnt in 34 Years

March 15, 2020 1 Comment

So, today is the 15th March. Today also marks the thirty-fourth years since I was born. Happy Birthday to me!

Much of my life, I have experienced the symptoms of a neurological disorder. A disorder that has since become a large part of my life. Yes, much of these symptoms were subtle, seemingly benign, quirks brushed off as nothing out of the ordinary.

The strange, trembling sensation in my legs, I’ve experienced for as long as I can remember, and so which I thought was natural, and something everyone experiences. The crippling pain attributed to growing pains (ironic as I’m only 4″11 and so growth isn’t something that has happened much in my life!).

But even as life with chronic illness and it’s accompanying symptoms has gone on for so long, I never imagined it would become a such a massive part of my life, as it has. The neurological condition, FND the diagnosis which eventually came after so many years has taken so much from me. But it has also taught me so many lessons. And so as I enter my 34th year on this earth, I thought I would share 34 lessons that living with a neurological condition has taught me.

"As I enter my 34th year on this earth, I thought I would share 34 lessons that living with a neurological condition has taught me." Share on X

34 Lessons That Illness Has Taught Me In 34 Years

1. You can never know what a person is going through

Living with a neurological condition that is invisible makes you appreciate that not everything is as it initially appears. When an illness is hidden, and the symptoms that are very real to us, but cannot be discerned by others, we can begin to feel judged for looking healthy and normal. Very often, people assume that there is nothing wrong with us because we “don’t look sick.”

"Living with an invisible condition has taught me to look beyond what we see and recognise that every person is fighting their own personal, invisible battles." Share on X

So, living with an invisible condition has taught me to look beyond what we see and recognise that every person is fighting their own personal, invisible battles. It has taught me more about compassion and empathy with others than anything else I have gone through.

2. The people you can count on and who values you

There is nothing like living with a life-long health condition to make you realise who you can count on and the people who truly value you. When living with a chronic illness, you often find that many people will walk out of your life or begin to ghost you. Living with FND has therefore weeded out those people who didn’t value me, and who will stick by me no matter what, through thick and thin. I now know who I can rely on, and who sees me beyond that of a person living with a chronic illness. And more importantly, who are the people worth having in my life.

3. You know your body better than anyone else, including doctors!

As someone who has lived with symptoms for many years, and subsequently has them dismissed by medical professionals, living with FND has taught me that I know myself and my body better than anyone else. For many years, doctors attributed my symptoms to anxiety and depression. Deep down, I knew that there was something more going on but began doubting myself with the repeated dismissals. So, when the diagnosis came, I felt nothing but relief and validation. It also helped me realise to have more faith and confidence in my concerns regarding my health and body.

4. There are always lessons to be learned even after living with illness for so long

I assumed that after a time, it would become easier to deal with a chronic illness. I believed that after a time, I would learn all the lessons that there is about living with chronic illness, and there would be nothing more to learn. But, I’ve since learned that living with a health condition is a continual learning curve. Some days are better than others. There are days you can cope, and others you don’t. And times, where your preferred coping techniques work and times where they don’t. And as more symptoms crop up, and more diagnoses appear, there is always much to learn.

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

5. You are not alone

For so many years, especially when the illness left me permanently alone and isolated, I felt like I was the only one who felt the way I did. It often felt that I was the only one to experience these symptoms. But social media helped me to realise that I am not alone and helped me to connect me with so many others going through the same or similar experiences.

"But social media helped me to realise that I am not alone and helped me to connect me with so many others going through the same or similar experiences." Share on X

6. You are stronger than you think

Through living with a neurological disorder, and the many limitations it presents, it has taught me that I can cope with more than I ever thought I could. It has taught me more about resilience and perseverance than anything else.

7. The bad times will eventually pass

It too shall pass. Yes, living with a chronic, incurable illness is much like riding a rollercoaster, with infinite ups and downs. But it has taught me that despite the difficulties of the downs, they eventually pass.

8. Gratitude is so important

There is always something to be grateful for, even on the bad days. On the worst of days, when the pain seems too much to bear, there is light to be found. And a moment which to be grateful for, and a small win against the darkness of illness.

Allowing a small moment for gratitude and positivity with the The Happiest Gratitude Journal from The Itty Bitty Book Co: https://ittybittybookco.com/products/the-happiest-gratitude-journal

9. Don’t compare your journey with anyone else’s

Comparison is truly the thief of joy. Yes, many things living with FND stops me from doing or stopped me from achieving certain milestones. But comparing myself to other people, or what I see on social media is not helpful, or makes me feel any better. Chronic illness has taught me that we are all on different journeys, and that is OK.

10. You can’t always control what happens to you, only how you respond to it

Yes, living with a chronic illness and how it affects life is not always in our control, but we can choose to wallow in the misery of the situation or find the positives and make the most of our life with a long-term health condition.

11. The importance of flexibility and going with the flow

When living with a chronic illness, it is hard to be spontaneous. But it can also be hard to make plans when you are unable to know how you are going to feel on any particular day. So you learn to be accommodating to your body, and what it needs.

"It can be hard to make plans when you are unable to know how you are going to feel on any particular day. So you learn to be accommodating to your body, and what it needs." Share on X

12. Acceptance is challenging to find, and even more so to keep

Acceptance is crucial in learning to live well and successfully with a chronic illness. But time and time again, and especially during the darkest times, I find myself feeling frustrated, angry and disheartened. I become overwhelmed with the worry and uncertainty of the future.

14. FOMO is not only a feeling but a way of life

When living with a chronic illness, FOMO becomes not a feeling but a way of life. Living with a long-term health condition, you learn that you will continually miss out on events and social gatherings.

15. But you learn ways to live with it, and finding ways around your new limitations

But it also helps you learn to live life on your terms, and in harmony with your illness. After the symptoms of FND deteriorated and was left unable to cope with large buildings, I thought travel was something I would no longer be able to do. But now I have found a love of cruising. A way of travelling in a way my condition allows and is agreeable with, at least somewhat!

16. There is no shame in asking for help

As much as we all like to be as independent as possible, living with a chronic illness often reminds you that there are times when you are not. And when such conditions are invisible, it is not always apparent that such help is needed. So, we need to be willing to let go of our pride and stubbornness and ask for assistance when symptoms become debilitating. As time goes on, you learn that it is OK to ask for help and require it, at times. Illness, or not we all need help and assistance at times.

17. The importance of self-care

Living with persistent and debilitating symptoms has taught me the importance of listening to your body, and giving it what it needs. Self-care is vital for everyone, but especially for those living with a chronic illness. It is also something that goes beyond luxurious spa days, for expensive pampering sessions. Just as necessary is nourishing your body with nutrients, getting enough sleep, or using a favourite moisturiser.

18. How to be patient

When you become a patient, you truly learn the virtue of patience. When living with a chronic illness, you learn to be still and to wait because we often have no other choice. We learn to wait for a diagnosis. We learn to wait for the severe and debilitating symptoms to dissipate. It can be challenging and frustrating, but it truly teaches the meaning of patience.

"When living with a chronic illness, you learn to be still and to wait because we often have no other choice." Share on X

19. You begin to distrust your body and develop FOGO (fear of going out)

One of the biggest lessons I had learned and the most significant thing to have to adjust to is no longer being able to trust your body. Symptoms often appear without warning, and so you begin to fear them and avoid going out or seeing others. Why? Because you no longer know if you will suddenly becoming unwell, left unable to function, and as a result, will become stuck somewhere away from that which helps comfort you or be alone with them.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

20. Doctors don’t know everything

There is nothing like being undiagnosed, desperately searching for what is wrong with you to make you realise that doctors are not infallible. They don’t know everything, and sadly you become only too aware on how often they can be dismissive of patients when they don’t know what is wrong.

21. The importance of pacing

Living with chronic illness and chronic pain means that you have to be aware of your limits, and pace accordingly. This could mean getting up earlier with enough time to be organised, and taking time so not to overexert yourself. Or leaving the house earlier than usual in case you are unable to walk as quickly as the previous day.

22. The importance of celebrating the small achievements

There is no doubt that chronic illness takes a lot. We begin to focus on what it has stolen, and what we can longer do, often feeling like a failure and becoming frustrated as a result. It is, therefore, important to celebrate what we can still do and be proud of the accomplishments that we do manage despite the limitations of chronic illness.

23. You begin to feel lonely and isolated

Living with a chronic illness means that you become trapped and imprisoned inside a body that no longer feels like your own, and which no longer works the way it should. The severity of the symptoms also means a significant amount of time is spent in your home, very often, alone and you come isolated and feeling lonelier than you have ever felt before.

24. Your disorder does not define you

It is a big lesson that I often have trouble accepting. It can be so easier to succumb to the illness and begin to feel that it is all you are; that it defines you and your life. But a diagnosis is not another personality trait used to describe you, nor does it overpower the good qualities or those qualities which defined you previously. Illness is a part of us and our story but not one that defines it.

"A diagnosis is not another personality trait used to describe you, nor does it overpower the good qualities or those qualities which defined you previously. Illness is a part of us and our story but not one that defines it." Share on X

25. The value of the internet and social media

Living with limitations, especially those that make you spend a large amount of time at home, and alone you begin to utilise the internet and social media to connect with others and help keep you entertained. The online world, I have learnt is a beautiful space for learning, sharing, and communicating. There are also brilliant communities for those living with chronic illness to both give and receive support.

26. Netflix, Amazon Prime, and all other TVOD platforms will become your best friend

When living with chronic pain, distraction will become the biggest weapon in your arsenal against this enemy. But there is often not much to do other than lie down and endure such symptoms. Netflix et al. will become the best form of distraction, with some of the shows bringing some welcome relief.

27. Shame and guilt is another unexpected side effect of living with a chronic illness

We often begin to feel shame and guilt for everything we can no longer do, and for not doing our share. Shame and guilt are also perceived for needing to cancel plans, and for needing constant help. And shame permeates at the thought that the illness has gone on for so long. Shame just for being ill.

28. Being ill can affect body image

It is hard to love or feel positive about a body that seemingly no longer listens to my signals. One that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules.

29. We begin to hide behind a mask to protect from judgements and feel ‘normal’

We women, living with a chronic illness, often will use make-up to construct a mask we can hide behind. A facade to allow us to blend in with everyone else and appear normal and healthy. It can help us to increase self-confidence and make us feel better about ourselves.

View this post on Instagram

A post shared by Rhiann Johns (@serenebutterfly)

30. We are not warriors, we are just trying to get through each day

Often people like to paint us as fighters, or ‘warriors.’ But the truth is, we often don’t feel like warriors. During the darkest and most difficult times with chronic illness, we are merely enduring and trying to get through it. We are not warriors; we are just a person living with a chronic illness.

"During the darkest and most difficult times with chronic illness, we are merely enduring and trying to get through it. We are not warriors; we are just a person living with a chronic illness." Share on X

31. The spoonie community is full of compassion and support

I and so many others have had the privilege through the internet and social media to have met so many wonderful, caring fellow spoonies.

32. There can be joy found in the smallest of things

Despite the many dark and challenging times when living with chronic illness and chronic pain, there are still many moments of joy and happiness to be found. Even in the smallest and simplest things; such as an unexpected phone call from a friend, or enjoying eating a favourite chocolate bar.

33. Sometimes there are no answers

One thing that you learn from having a chronic illness is that you won’t always get a satisfactory explanation for why certain things happen. There are many people, unfortunately, who never get a definitive diagnosis, or what has caused the disorder in which they live. It is frustrating, but sometimes things simply are.

"There are many people, unfortunately, who never get a definitive diagnosis, or what has caused the disorder in which they live. It is frustrating, but sometimes things simply are." Share on X

34. Positivity and hope are not always the answer they appear to be

When living with a chronic illness, people often tell us to stay positive and maintain hope. Easier said than done when constantly experiencing severe and debilitating symptoms, right? Having faith usually only ends up with broken and ruined dreams, as often what we wish never materialises. Hope dashed when once again we wake up in pain. When the flame of hope extinguishes time and time again, our dreams begin to dwindle, becoming hopelessness, sometimes even into despair. Sometimes, accepting the reality is the easiest path and which doesn’t end in endless disappointment.

"When living with a chronic illness, people often tell us to stay positive and maintain hope. Easier said than done when constantly experiencing severe and debilitating symptoms, right?" Share on X

In Chronic Illness

The Reality of Living Through A Flare

March 10, 2020 4 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This March, as I am living through a debilitating and challenging flare, I am going to write about the reality of living through one.

Holidays! How we love and look forward to them! The ability to escape our everyday lives; the capability to evade the monotony and mundane aspects of our lives. A welcome break from our lives, especially those aspects that we don’t like or have trouble accepting.

When living with a chronic illness, oh how we wish we could escape our bodies; a wish that we could break away from the crippling and disabling symptoms that affect every facet of our lives. And never is this more true, when amid a cruel and torturous flare.

The capacity to run away and leave behind our weak, frail and pain-riddled bodies would be something that we would welcome in a heartbeat. But, this is merely a fantasy; something that could only happen in the imagination behind books or films.

During A Flare There Is Only Staying and Enduring

The reality is that we are trapped; imprisoned with no such ability to escape or run away. Our bodies become prison cells shackling us inside its dark and murky walls, unable to move far, and although flares come and go, it still feels like a life sentence us, an innocent victim, as the realisation that these flares will reoccur time and time again.

There is no break or respite when living with a cruel and relentless flare. No, there is only staying; trapped inside the prison cell that is our body and only able to lie and endure the harrowing effects of our symptoms.

"There is no respite when living with a cruel and relentless flare. No, there is only staying; trapped inside the prison cell that is our body and only able to lie and endure the harrowing effects of our symptoms." Share on X

There is a lot of staying when living through a horrible and debilitating flare. Yes, much time becomes spent living inside a body that often no longer feels like our own, one that has been taking over by illness and its accompanying symptoms. But during a flare, there is a lot of staying inside our homes, our sanctuaries, places that we deem safe even when illness and its symptoms invade them.

curled up in a foetal position because of pain — Yes, much time becomes spent living inside a body that often no longer feels like our own, one that has been taking over by illness and its accompanying symptoms.

Pain and illness have a habit of making our lives shrink as for days, weeks, and sometimes even months, we are unable to venture far from our homes if at all. As such, do not have the opportunity to see other people apart from those we live with, leaving us feeling isolated.

How we wish during a flare that the exacerbating symptoms would leave. Still, they prove to be stubborn, refusing to go, staying in our lives for the foreseeable future at least.

During A Flare, There Is No Doing

During a flare, there is no doing. No, there is only suffering and enduring severe and continuous symptoms. The pain, fatigue, and other persistent and tenacious symptoms leave us in bed, unable to function or participate in everyday life. And as such, resting, waiting for the symptoms to subside and the flare to pass becomes the new norm.

"The pain, fatigue, and other persistent and tenacious symptoms leave us in bed, unable to function or participate in everyday life. And as such waiting for the flare to pass becomes the new norm." Share on X

In my years of living with a chronic illness, the only doing during a flare is finding new ways to do things without exacerbating the already debilitating symptoms. We do what we can, but it can often feel like it is not enough. And as such, we no longer feel productive, or someone who is doing. We think, therefore, that we are a burden.

black and white photo of woman staring out of a window — During a flare, we must learn new and inventive ways to do things without exacerbating the already severe symptoms.

During a flare, it certainly feels that the days and weeks filled with nothing or at least the bare minimum. No, during an exacerbation, our days are not filled with doing; the days and weeks become concerned with coping and surviving.

"No, during an exacerbation, our days are not filled with doing; the days and weeks become concerned with coping and surviving." Share on X

Not Being, Just Existing

Even when living with the constant and persistent presence of chronic illness, we still manage to carve ourselves an identity outside of it. We know who we are, and can define ourselves beyond that of someone living with a long-term health condition.

When amid a severe and debilitating flare it can feel that we are barely being, only existing. Photo by **Bianca Salgado** from **Pexels**

But when living through an endless, paralysing flare, we no longer feel like ourselves. Our life, our whole being becomes revolved around the current, paralysing exacerbation and the symptoms that accompany it. Our being becoming limited by the severe, debilitating symptoms, and left unable to the things that everyone else often takes for granted.

"When living through an endless, paralysing flare, we no longer feel like ourselves. Our life, our whole being becomes revolved around the current, paralysing exacerbation and the symptoms that accompany it." Share on X

…But Starting Towards Targeting Goals

But it can become tiresome, living our lives with such restricting limitations. And as such, we begin to push our limits somewhat to stave boredom and see more than the four walls of our prison; a prison constructed by chronic illness and particularly the repeated flares.

"But it can become tiresome, living our lives with such restricting limitations. And as such, we begin to push our limits somewhat to stave boredom and see more than the four walls of our prison." Share on X

In my experience, confidence can take a real battering when a severe and impairing flare. During these times, I am unsure and apprehensive when doing something or going somewhere, which before came readily and with no hesitation. But during a flare, or for some time after it, I become anxious as I am afraid that doing so will trigger another onslaught of unpleasant symptoms.

woman wearing distressed denim jeans sitting down inside room — When living with chronic illness and burdened by a flare, we can lose some of our confidence and become unsure and apprehensive about our everyday life. Photo by Imani Clovis on Unsplash

And so, I set myself small, little targets to achieve certain things. Particularly, visiting such places that I have found to trigger symptoms such as dizziness or those places where I’ve experienced falls. When I meet these targets, I reward myself, although the real reward is the increased confidence it gives me.

The Knowledge of Future Flares Weighing Heavily On My Mind

Experiencing and living through a flare, is incredibly unpleasant; it severely limits our lives and the choices available to us. So, it weighs heavily on my mind that this current flare will not be the last. The weight of the knowledge that this condition is my life now, and seeing future impending downturns is burdensome. Such insight can be frightening and discouraging; we want normality and freedom from the confines of pain and illness.

I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to. But I also know that I will survive because I have done before and able to again.

"Experiencing and living through a flare, is incredibly unpleasant; it severely limits our lives and the choices available to us. So, it weighs heavily on my mind that this current flare will not be the last." Share on X

It is further discouraging with the knowledge that such downturns are becoming more frequent and severe. Such awareness is bothersome and frightening. However, when weighing all the evidence from previous exacerbations in symptoms and functioning, I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to. But I also know that I will survive because I have done before and able to again.

"I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to. But I also know that I will survive because I have done before and able to again." Share on X

March Link-Up Party with A Chronic Voice

In Chronic Illness

Am I A Warrior? No, I Am Just Enduring

February 27, 2020 4 Comments

On reflection, I’ve come to realise how much I’m always fighting. And no, I’m not fighting in a war. But I am fighting for my life; fighting for some semblance of normality.

A warrior. A person described as an experienced and skilled fighter.

Warrior, a short word that divides many within the chronic illness community. One which many resonate with, the recognition of the constant fight and struggle of living endless symptoms of a never-ending illness. For others, they try and distance themselves from the phrase, one which does not resonate with them as the disease has become a part of them, and to fight it, would be to battle themselves.

Those living with chronic conditions such as I, we are often referred to as ‘warrior’. But am I a warrior? No, sometimes it doesn’t feel like it. At times it feels like I am merely enduring.

In the post ‘Embracing The Warrior Inside’, I discussed the term ‘warrior’ and how I began to resonate with it, in my own life of living with a neurological disorder. It became a word I related to, as I came to realise the fight I conquer every day. And despite the insurmountable odds that the disabling symptoms put in my way.

It can be easy to feel like a #warrior during moments of stability and relative wellness. But when we are flaring and feeling worse than ever, as I am finding out, then we feel anything but a warrior. We can feel weak, useless and a burden #spoonie #chronicillness #chroniclife https://t.co/6ljRHMQ2sN
— Rhiann Johns (@serenebutterfly) February 18, 2020

However, I have come to appreciate that it can be easy to feel like a warrior when we are experiencing moments of stability and relative wellness. Of course, the symptoms of chronic illness never disappears, but when they aren’t as disabling and feel like we can conquer anything despite them, we can feel like a warrior. We can feel like a victor.

"It can be easy to feel like a warrior when we are experiencing moments of stability and relative wellness. We can feel like we can conquer anything despite chronic illness; we can feel like a warrior. We can feel like a victor." Share on X

But even when our physical health is at it’s worse, if our emotional health remains unscathed, the warrior mentality remains intact. Even during these hard times, there is still a piece of mind that this too shall pass. A place in which self-blame and judgement do not exist, despite the tenacious essence of such symptoms.

Those Times When The Warrior Title Doesn’t Fit

But what about those times when we are amid a severe and debilitating flare? The times when everything feels like an impossible struggle; or those times when despair and hopelessness accompany the persistent and disabling symptoms? And the times in which our customary emotional resilience for coping with the demands of chronic illness has seemingly disappeared?

Well, inevitably these are the times when the ‘warrior’ hat we usually don, no longer fits. This hat no longer fits when the constant struggle of living with a chronic illness becomes too much to bear. The times when the symptoms become exceptionally crippling that, we can scarcely cope; drowning in the pain and misery that such symptoms cause. And finding ourselves unable to keep our heads above the water as the storms persist.

"The warrior hat no longer fits when the constant struggle of living with a chronic illness becomes too much to bear. The times when the symptoms become exceptionally crippling that, we can scarcely cope." Share on X

When in the middle of a severe and debilitating flare, it can feel like we are drowning, and unable to keep our head above water.

A surge of grief begins to dominate our very existence as the losses increase as a consequence of the continued damage to our functionality. The “I can’t” that we once denied slowly becomes our truth, as everything, even living, becomes a challenging battle. The inability to do those things that once came so naturally takes up so much room in our minds, that it can feel like we are less than or have very little to offer to the world.

"The "I can't" that we once denied slowly becomes our truth, as everything, even living, becomes a challenging battle." Share on X

And So No, We No Longer Feel Like a Warrior

And so, we no longer feel like a warrior. The feelings that conjure when being a warrior such as bravery and positivity is replaced with feelings of weakness, being useless and a burden to others. When amid a severe and debilitating flare, the warrior inside of us has disappeared, we are unable to fight. And as we are unable to resist, we can only lie and endure the pain and agony of such a flare. And our days become consumed by the disruption, and our lives become preoccupied with existing rather than living.

"When amid a severe and debilitating flare, the warrior inside of us has disappeared, we are unable to fight. And as we are unable to resist, we can only lie and endure the pain and agony of such a flare." Share on X

But still, we paint a smile and pretend that we are okay. And yet, we don the hat of a warrior, despite that it no longer fits. Often, there is an added pressure from outside forces such as the media, that being a warrior, and fighting the illness as if it’s a mortal enemy is the only acceptable way to be ill. And the only sufficient way to cope with living with a chronic disease.

"Often, there is an added pressure from outside forces such as the media, that being a warrior, and fighting the illness as if it's a mortal enemy is the only acceptable way to be ill." Share on X

The Metaphors Used To Describe Illness

In the media, there is a saturation of the use of metaphors such as ‘warrior’, ‘fight’, ‘war’ and ‘battle’ when describing life with chronic conditions, and those living with them. And yes, sometimes, they can be powerful.

But, often the use of such descriptions can add a lot of pressure for those living with a chronic illness. And when amid an extremely severe and debilitating flare; unable to fight, or enter into a war or battle, there is the suggestion that we have somehow lost, or failed. That if we’d just ‘fought’ harder, we would be better or at least be able to cope with the current flare. Furthermore, there is an implication that the blame lies solely at the feet of the sick person.

The media often uses phrases such as ‘fighting’, ‘battle’, and ‘war’ when discussing illness and those living with such afflictions.

"When amid an extremely severe and debilitating flare; unable to fight, there is the suggestion that we have somehow lost, or failed. There is an implication that the blame lies solely at the feet of the sick person." Share on X

For those of us living with such afflictions, the use of such metaphors can make us feel weak and powerless. Particularly so, when in the middle of a powerful and relentless flare that we cannot fight or shake off. The hatred and animosity for our sick and frail bodies deepen as it becomes an enemy that must be defeated. And setting us up for a life-long battle against ourselves; one in which it is impossible as the life-long condition is just as much of a part of ourselves as anything else.

I Don’t Feel Like A Warrior

At this moment in time, no, I don’t feel like a warrior. I am struggling; barely surviving and just existing. The flare in the symptoms which accompany FND are at their worst, and in all honesty, I have never felt so bad. Words that I am sure I have used repeatedly during my journey of living with a chronic illness. But still, words, that at this moment in time are one hundred per cent accurate.

"At this moment in time, no, I don't feel like a warrior. I am struggling; barely surviving and just existing." Share on X

I have spent so much time recently in floods of tears as a result of the excruciating pain sweeping throughout my body. The trembling in the legs, dizziness and vertigo becoming more frequent and intense that there is nowhere I feel safe. And as there is nowhere, I feel safe and secure from the symptoms that are making my life hell, the anxiety that is often much a part of living with chronic illness than the forementioned symptoms has also started wreaking havoc.

The symptoms have become out of control, and its strength unconquerable. And as such, I am unable to fight or go into battle against these unforgiving forces. I am only able to endure the agonising pain and the unrelenting assault of the other symptoms that accompanies FND.

So, no, I am not a warrior. I am just a woman living with a life-long neurological condition trying to get through each day. Days where I can dodge the boulders that FND continually throws at me. And other days where I am getting crushed by them.

"So, no, I am not a warrior. I am just a woman living with a life-long neurological condition trying to get through each day." Share on X

No, I am not always a warrior. There are days where I’m unable to fight the symptoms that affect me so significantly. But when the flare passes, which they eventually do, I hope that I can fight for a better life for myself and make it a good story.

In Chronic Illness

5 Ways To Find Self-Love When Chronically Ill

February 13, 2020 5 Comments

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. For February 2020, I will use the prompts to discuss five ways in which we can use to find self-love when chronically ill.

After what felt like an incredibly long month, we finally find ourselves in February. February, a month that many regards as the ‘Month of Love’ as we look towards preparations for St. Valentine’s Day. A holiday that, for many, is exclusive for couples, as they those arrange to celebrate the person they love.

Sadly, however, we rarely take the time to celebrate ourselves. Often, we never take time to love ourselves; spending more time being hard on ourselves, or running ourselves down. Many even find it difficult to love themselves at all.

"We rarely take the time to celebrate ourselves. Often, we never take time to love ourselves; spending more time being hard on ourselves, or running ourselves down. Many even find it difficult to love themselves at all." Share on X

The most important relationship will always be the one you have with yourself, which is why self-love is so important especially when living with the demands of chronic illness.

It can be hard to feel self-love when in a constant battle with your body

It can be especially challenging to find love ourselves, for example, when living with chronic illness. Why is this?

Because when living with a chronic illness, self-esteem becomes heavily impacted. When constantly sick and in pain, we too are confronted with the many negative changes that our body undergoes. As a result, it can foster a deep hatred of our bodies. We find ourselves constantly exhausted when always on edge, waiting for the next imminent hurdle or setback.

"When constantly sick and in pain, we too are confronted with the many negative changes that our body undergoes. As a result, it can foster a deep hatred of our bodies, and ourselves." Share on X

We also find ourselves unable to do many of the things we used to do. And forced to rely on others for help with often the simplest of things. So, we start to feel shame and guilt for succumbing to illness. And so not only do we not love ourselves, but it can also lead to feelings of self-hatred.

RuPaul once famously said, “If you can’t love yourself, how in the hell you gonna love somebody else.” Such profound words, but also begs the question of how we can love our life if we are unable to love ourselves first?

The above quote also begs the question on how we can love our life, especially one including a chronic illness if we are unable to love yourselves first?

So how can we start to work on self-love when living with the constant effects of chronic pain. Plus the many other symptoms that accompany life with chronic illness?

"How can we start to work on self-love when living with the constant effects of chronic pain. Plus the many other symptoms that accompany life with chronic illness?" Share on X

Way to Find Self Love When Chronically Ill: Don’t Go Looking To Comparing Yourself To Others

With the rise of social media, it is easier than ever to compare yourself to that of others. We are often our own worst enemy, as we pick ourselves apart, weighing ourselves and our achievements against others. As a consequence, we often feel that we fail to measure up to everyone else.

For those of us living with chronic illness, we are particularly susceptible to feeling low as well as feelings that we are ‘less than’ as we compare ourselves to others. As we look to our healthy peers, we think that we have failed to achieve as much as them. Or feelings of jealousy as we see them living without the limitations or obstacles that we continue to face every day.

"For those of us living with chronic illness, we are particularly susceptible to feeling low as well as feelings that we are 'less than' as we compare ourselves to others." Share on X

But, they don’t live with the limitations that we do, so comparing ourselves against them is futile, leading to feelings of self-hatred and blame. Instead we need to learn to celebrate and embrace our lives, imperfections and all. There is only going to be one you, and that is always going to be enough and deserves celebrating!

Way to Find Self-Love When Chronically Ill: Playing The Gratitude Card

When living with a chronic illness, and with a body that is continuously hurting, it can be too easy to focus on everything that is wrong with our bodies. It becomes easy to see our bodies as a prison cell, with no escape, trapped inside hell.

It can seem, especially when blighted with unrelenting symptoms that things are constantly going wrong. And as consequence we fail to see or appreciate when things are going right.

If you struggle with gratitude, a journal to note down things that have gone right or for that which make you feel good despite constant pain and sickness can be a useful exercise. Photo by Freshh Connection on Unsplash.

It can be a useful exercise, therefore, to practice gratitude by keeping a journal for when things go right — or writing down the things that make you feel good despite chronic illness. It can also help reframe our criticism with our bodies with gratitude for its hard work in fighting illness.

"When practising gratitude, the act of self-love becomes second nature. It helps us to see the blessings around us, including ourselves." Share on X

When practising gratitude, the act of self-love becomes second nature. It helps us to see the blessings around us, including ourselves. And the thoughts we hold become less focused on criticism and self-doubt to love, kindness and acceptance towards ourselves despite the unrelenting force of chronic illness and its symptoms.

Way to Find Self-Love When Chronically Ill: Joining A New Club & Engaging With A Hobby or Interest

When living with persistent and debilitating symptoms, and never feeling well, it can be easy to succumb to the illness and begin to see that it is all we are. It is often all too easy to start to see the diagnosis as the sole defining factor of our identity.

But as we do so, confronted with the increasing number of losses, self-hatred and lack of purpose also grow. By taking up a new hobby, or engaging with previous hobbies and interests, it may help increase our self-confidence. They give us an identity outside that of chronic illness and gives us a new sense of purpose.

"By taking up a new hobby, or engaging with previous hobbies and interests, it may help increase our self-confidence. They give us an identity outside that of chronic illness and gives us a new sense of purpose." Share on X

It allows us the opportunity not to have our illness at the top of our minds, and to feel like everyone else. It gives us the gift of feeling like our peers. And it also allows us the fortuity to connect with like-minded individuals; the ability to connect with others. When spending so much time at home, often alone due to illness, it is easy to become isolated. But being with others and taking part in an activity, you all have an interest in helping foster a sense of belonging.

Joining a group or taking up a hobby allows us to make connections with other like-minded people, which also helps us to make us feel better about ourselves. Photo by Perry Grone on Unsplash.

Also, when developing a hobby, especially during hardships, it can help increase self-confidence by giving you a sense of accomplishment every time we progress on that hobby. And that new sense of achievement gives us something new to feel good about ourselves. It also reminds us of the abilities that we do still have, especially when it feels that chronic illness only takes away.

"Also, when developing a hobby, especially during hardships, it can help increase self-confidence by giving you a sense of accomplishment every time we progress, giving us something new to feel good about ourselves." Share on X

Way to Find Self-Love When Chronically Ill: Invigorating Body and Soul With Simple Acts of Self-Care

In recent times ‘self-care’ has become a fashionable buzzword conjuring images of luxurious spa days, or a shopping spree for example. Although such activities can be fun and rewarding, for those of us living with chronic illness are ones which we don’t have the energy or financial means to enjoy.

Self-care doesn’t have to include luxurious spa days; it can be as simple as taking a bath, or listening to our bodies and giving it what it needs. Photo by **Luis Ruiz** from **Pexels**.

But simple acts of self-care can be as rewarding. Actions such as taking a bath or shower, followed by using a favourite lotion. Or ensuring that we are drinking enough water during the day and nourishing our body with healthy and nutritious foods.

"Self-care is taking the time to listen to our bodies, and giving it what it needs at that moment. Doing what you can for your body to make yourself feel better." Share on X

Self-care is taking the time to listen to our bodies, and giving it what it needs at that moment. Doing what you can for your body to make yourself feel better. And doing so helps to restore the balance in your relationship with your body.

Way to Find Self-Love When Chronically Ill: Ditching Self-Blame

When living with a chronic illness, there is a strong temptation to self-blame. For those of us struggling with pain and sickness, it can feel the suffering is punishment for something we’ve done wrong or retribution for a deep character flaw. Or when illness flares, we may blame ourselves for the situation, as penance for overdoing it or not taking better care of ourselves.

"An essential path towards self-love is in learning to accept ourselves and our conditions. It also means yielding self-compassion when we are left unable to do anything and celebrating those times we can." Share on X

To combat falling into the spiral of self-blame is to replace it with self-love. An essential path towards self-love is in learning to accept ourselves and our conditions despite wishing things were different. It also means yielding self-compassion when we are left unable to do anything and celebrating those times we can.

After all, there is no benefit to self-blame and only leads to a hefty emotional tax to thinking this way.

So, how do you find your way towards self-love when living with a chronic illness?

In Chronic Illness

Identity Crisis: Am I Defined By Chronic Illness?

February 1, 2020 1 Comment

The Identity Crisis: Am I Defined By Chronic Illness?

Often chronic illness sneaks into your life, like a thief in the night. It takes everything that once defined us; stealing our identity and imagined futures. For those, like me who have suffered from symptoms associated with illness for most of their life, it is hard not to think of the person I might have been if FND had not become a permanent and prominent part of my life.

When living with a chronic illness; continually feeling the effects of can often makes us wonder “Who am I?”

When living with a chronic illness, we are often told not to let it define us. Advice that may seem constructive and wise, but which often feels that it woefully disregards our experiences of living with a chronic condition.

The Truth Is That Sometimes Chronic Illness Does Define You

Why? Because the truth is, that if living with a chronic illness, then it might define you, becoming an important part of your identity. How can it not when such relentless and disabling symptoms often prevent you from living a ‘normal’ life. Illness and all of its accompanying baggage is not just a small detail of our life story. It becomes a crucial aspect of life.

"The truth is, that if living with a chronic illness, then it might define you. How can it not when such relentless and disabling symptoms often prevent you from living a 'normal' life." Share on X

It seems that illness is nevermore a defining, part of our lives when the symptoms are at their worst. When severe and disabling symptoms surrenders you bedbound, and which everything feels like a monumental struggle. It is during these times when everything that defined us, such as the activities we enjoyed, or the hobbies that meant so much are forgotten and discarded as debilitating symptoms leave us unable to achieve, well anything.

Becoming Lost Within Chronic Illness Itself

These weeks and months of becoming disabled by such severe symptoms, it can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself. The loss of that which defines you, as well, you. And the loss of the ability to do those things which make you, you.

Silhouette of woman in dark — During the worst times when living with chronic illness, it can be easy to become lost within it and to begin to see that is all we are. Photo by Kevin Jesus Horacio on Unsplash.

"It can be easy to become lost within chronic illness itself and begin to see that it is all we are. And so becomes a wave of grief and loss. The loss of yourself. The loss of that which defines you, as well, you." Share on X

Often, you find yourself no longer being able to do things you once were able to do. Or no longer have the same opportunities as before illness crept it’s way into your life. Suddenly becoming ill, or the sudden deterioration of symptoms can often feel that the person we once were replaced by a weaker and frailer version of ourselves. We no longer feel like the same person we used to be. And so we begin to grieve for that old version of us.

The severity and intensity of illness and subsequently becoming incapacitated, life and we slowly become defined by what’s wrong.

When living with constant and relentless symptoms, it can often feel that life and ourselves become defined by what’s wrong. The quote is taken from the blog post ‘Chronic Illness: A Harbinger of Shame & Guilt‘

But Chronic Illness Should Not Be The Defining Factor of Your Life

That said, however, chronic illness should not become the defining factor of your identity. Chronic illness and all its baggage is not the only part of you and is not the most crucial part.

"Chronic illness should not become the defining factor of your identity. It is not the only part of you and is certainly not the most crucial part." Share on X

When diagnosed with a chronic illness, our old identity does not become suddenly erased, nor does a diagnosis become a replacement for our name. Nor does it have to be the first thing you broadcast when being introduced to people. I have since learned the importance of being able to talk about other things apart from your diagnosis. And being able to recognise your own identity beyond that of ‘patient.’

"I have since learned the importance of being able to talk about other things apart from your diagnosis. And being able to recognise your own identity beyond that of 'patient.'" Share on X

So Am I, Or Am I Not My Illness

So, am I, or am I not my illness? Maybe. Maybe not. Indeed, my ongoing struggles as a result of FND is a constant reminder that it is a massive piece of who I am. The continued severe and debilitating symptoms that affect every aspect of my life reminds me of its dominance; stressing that it and its symptoms are often stronger than I am.

I am not the same girl I was before I got sick. Or at least before the symptoms worsened and becoming a very significant part of my everyday life. Sure, I’m still mostly “me” but a different version of who I was before FND impeded my entire life.

"Sure, I'm still mostly "me" but a different version of who I was before FND impeded my entire life." Share on X

Certain qualities become amplified, priorities become reorganised. And how we see the world becomes viewed through a different set of lenses. But illness not only changes who we are as a person but also how we live. Every choice we now make defined by chronic disease and disability.

Redefining Yourself Through Illness and Disability

But although illness starts to define you, and the choices forced upon you with regards to your illness or disability, it is also through them that you can begin to redefine yourself.

We make the most of the times we are feeling relatively well by taking part in activities and interests that distracts us from the pain and other symptoms of chronic illness. Those that help give us an identity beyond that of a patient, or someone as being chronically ill.

Woman taking photograph — But illness and disability do not have to define us; it can be a stepping stone to help redefine us.

Being ill has also redefined the way I look at how I take advantage of what is out there in the world beyond my comfort zone. Due to my condition, and how it affects me, I have become limited to places in the world I can travel, and also the method of transport I can use. But I still go when I am able and have since found a love of cruising, which I may not have found if I was not sick and limited by FND.

How Illness Has Made Me, Me

I would argue that having to live with illness has made me much more emphatic and compassionate. That is not to say those who aren’t living with illness or disabilities cannot be those things, but I know what it feels like to experience struggles and adversities through my personal experiences of being sick.

The experiences I have accrued since living with the permanent effects of living with a neurological disorder has made me a stronger person. Being in constant pain, forced to continually adapt as it refuses to work the way I want it to have made me learn to fight in ways I would never have had if I weren’t ill. It has made me more determined to weather the painful and challenging moments to achieve what I want to do or go to places that make me feel uncomfortable due to unpleasant symptoms associated with FND.

"Being in constant pain, forced to continually adapt as it refuses to work the way I want it to have made me learn to fight in ways I would never have had if I weren't ill." Share on X

I am not my illness. But my illness is a part of me.

I have since concluded that I am not my illness. But my condition is a part of me. And a part of me that has shaped me into the person that stands before you today. Certainly, a life without FND and all the baggage that accompanies such a condition means I would have led a very different life without it.

I am never going to experience what it is to be a fully functioning, ‘normal’ human being. Still, the experiences gained from living with chronic illness has helped redefine me, and not always negatively.

It has helped make me, me.

"I am not my illness. But my illness is a part of me. The experiences gained from living with chronic illness has helped redefine me, and not always negatively. It has helped make me, me." Share on X