april link-up party Archives

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. It would be remiss of me not to use this month to discuss the ongoing Coronavirus pandemic through the eyes of someone living with a chronic illness— a topic that is affecting everybody, and not just those living with long-term health conditions.

Just like with any start of a brand new year, 2020 promised hope and endless possibilities. However, little did we imagine that instead, it would bring a worldwide pandemic and irrevocably change the way we live our lives.

Sign reading 'World: The World Is Temporarily Closed' — Who could have imagined at the start of 2020, much of the world would become closed due to a pandemic? Photo by Edwin Hooper on Unsplash

At the time of writing this blog post, much of the world is in lockdown. The UK government even extending ours by at least another three weeks. Our movements have become severely restricted. Our lives and our worlds becoming increasingly smaller. Who knew that life could change so dramatically in the blink of an eye?

Strange Time For Many But For The Few, It Feels Like Returning to Normal

Well, those living with chronic illness are all too familiar that life can change so dramatically, so quickly. Illness, an evil and malevolent force, often enters the lives of its victims, so abruptly and with no warning, It leaves behind chaos and destruction, and as such, life will never be the same.

Those living with chronic illness are all too familiar that life can change so dramatically, so quickly. Everyone is experiencing many of the grief and feelings those with chronic illness goes through after diagnosis.

"Illness, an evil and malevolent force, often enters the lives of its victims, so abruptly and with no warning, It leaves behind chaos and destruction, and as such, life will never be the same." Share on X

Currently, for many, these times seem strange and peculiar. But for those living with chronic illness, it often feels like a returning to normal. For us, our lives and our worlds already feel small, so small that it often feels claustrophobic. The isolation endured by many at this moment in time is often the norm for those living with chronic illness.

"For us, our lives and our worlds already feel small, so small that it often feels claustrophobic. The isolation being endured by many is often the norms for those of us who live with chronic illness." Share on X

The world is experiencing a loss of freedom; unable to move freely. And a loss of the freedom to plan. Collectively we are all experiencing grief, anxiety and overwhelming uncertainty. All of which are hallmarks of what it is to live with a chronic illness.

Window covered with bars — When living with chronic illness our homes can often feel like a prison; a place where we are confined with debilitating symptoms. During the lockdown, everyone is experiencing the feeling of being imprisoned. Photo by Denny Müller on Unsplash

Everyone is currently experiencing confinement within the same four walls day in and day out, with little reprieve to the outside world. A scenario which is all too familiar for those living with chronic illness as persistent, debilitating symptoms often imprison us behind those same four walls. And where nights and days blur together. Once, it was due to severe, and disabling symptoms, and now due to COVID-19.

"Everyone is currently experiencing confinement within the same four walls day in and day out, with little reprieve to the outside world. A scenario which is all too familiar for those living with chronic illness." Share on X

It seems that everyone is experiencing a small slice of what it is to live with our truth.

Distancing From Thoughts of The Future

Of course, discussions have begun regarding the future, and how and when the current lockdown will end. And although all of us wish to reclaim life as we know it, and return to normality, there is also an element of anxiety, especially for those living with chronic illness.

Our lives with chronic illness have become impacted in ways that are yet to be determined. The lockdown has meant the cancellation or postponement of essential medical appointments. Those living with chronic illness now have no access to therapies that help ease the disabling symptoms or which help reduce the number of debilitating flares. So, currently, there is a real fear of an uncontrollable flare or a real setback to progress that we had previously made.

"Our lives with chronic illness have become currently impacted in ways that are yet to be determined. There is a real fear of an uncontrollable flare or a real setback to progress that we had previously made. Share on X

Before, the lockdown, because of increased falls and deterioration in other symptoms, I lost confidence in going out. Now, with the inability to go out, and regaining that lost confidence, I fear that it will make the situation worse. I fear that my confidence will take a further hit, making going out even harder.

The Pandemic and Subsequent Lockdown Is Stressing Everybody

Living with chronic illness, or not everybody’s lives and futures are entirely uncertain. And with all this uncertainty, it is reasonable for all of us to be feeling stressed and anxious.

There is much uncertainty regarding the future, and how and when the lockdown will be lifted, and allowing us to return to normality. As such, many are fearful and stressed. Photo by Tonik on Unsplash.

"Living with chronic illness, or not everybody's lives and futures are entirely uncertain. And with all this uncertainty, it is reasonable for all of us to be feeling stressed and anxious." Share on X

Although living with uncertainty isn’t new when living with chronic illness, it does not mean that the pandemic and lockdown is any more tolerable for us to manage. We’re adding the stress of living with the Coronavirus situation along with the burden of trying to control a chronic health condition.

Perhaps the Pandemic Will Lead to Better Understanding of The Difficulties Faced By Those Living With Chronic Illness

When diagnosed with chronic illness, there come waves of grief, sadness, anger, loss, fear, and uncertainty as we grapple with the changes that illness induces. And as the world is coming to terms with these changes, everyone is experiencing the same emotions. We are no longer alone in our grief.

The discomforts faced every day by those living with chronic illness, are being felt all around the world. Ordinarily, there are no feelings of solidarity, and being ‘in this together’ as there is now. At this moment in time, we are all attempting to navigate and cope with this reality.

"Ordinarily, there are no feelings of solidarity, and being 'in this together' as there is now. At this moment in time, we are all attempting to navigate and cope with this reality." Share on X

We can only hope that after the end of this pandemic, there will be more understanding and empathy regarding the difficulties faced for those living with chronic illness. So often, people comment on how nice it must be to spend so much time at home. Now, that they too are experiencing this phenomenon, perhaps they will realise how difficult it can be.

"We can only hope that after the end of this pandemic, there will be more understanding and empathy regarding the difficulties faced for those living with chronic illness." Share on X

Celebrating Not Missing Out

Like when going through any difficult time, I believe it is vital to see the silver lining. To cope, therefore, it is crucial to look for the positives in a challenging situation.

Those who are disabled or chronically ill are enjoying the accessibility that the internet provides by allowing to watch new film releases and exclusive concerts and gigs during this lockdown. Photo by **bongkarn thanyakij** from **Pexels**.

Throughout the lockdown, I find it a comfort that as everyone is in the same position, I am no longer missing out on anything. Because when living with a chronic illness, you tend to miss out a lot. Missed parties, celebrations, and lots of cancelled plans are the norm due to persistent, debilitating symptoms. But now, as the lockdown continues, we are all imposition with missing out.

"Throughout the lockdown, I find it a comfort that as everyone is in the same position, I am no longer missing out on anything. As the lockdown continues, we are all imposition with missing out." Share on X

In truth, this lockdown has allowed us to engage in our interests, in ways that hadn’t previously been available. As someone affected by severe and debilitating symptoms, I am unable to attend concerts and gigs. The cinema, with its high ceilings, is somewhere else that I find it challenging to visit. A deep shame, as a person who very much enjoys films. The lockdown, however, has allowed me to watch new releases from home, as cinemas remain closed. I have also enjoyed some of my favourite artists perform from their own homes, from the comfort of mine.

For me, one of the silver linings of the pandemic and the subsequent lockdown has how accessible the world has become. For those of us living with chronic illness and disability, we hope that it continues even after normality has resumed.

"One of the silver linings of the pandemic and the subsequent lockdown has how accessible the world has become. We hope that it continues even after normality has resumed." Share on X

What has been your experience of the lockdown and self-isolation? Leave your thoughts below

In Lockdown: A Returning to Normal For Some

April Link-Up Party with A Chronic Voice

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 April, and because for several weeks I have been experiencing a severe pain flare, I would use the prompts to write a letter to my pain.

To My Pain

Yes, I have addressed this letter to you, ‘my’ pain and not just pain. I know pain is felt by many. Perhaps if you were benign, harmless and temporary, I would have only addressed it to pain. But you’re not, you’re persistent and chronic, becoming a significant and permanent part in my life. You have become another part of me, so I think I can refer to you as ‘my pain.’ The pain I feel, the pain you make me feel, is personal to me; something that is felt by only me, remaining invisible and unknown to everyone else.

"Pain is deeply personal to the individual. We do not feel the same pains. It remains invisible and unknown to everyone around us." Share on X

Living with constant and debilitating pain is tiring…well more like exhausting!

What’s it like to live with you, you ask? Well, it’s tiring. Wait, it can be so much more than tiring. It’s exhausting. For weeks now, the excruciating and debilitating as it’s worst, there have been no breaks, no respite from the torment you have been inflicting on me and my life.

"Living with chronic pain is always tiring; exhausting even. Pain allows for no breaks, no respite from its torment." Share on X

You, which has become a sharp, electric shock type of sensation throughout my spine and legs, and one which has prevented me from getting to sleep, or on other occasions waking me from sleep. Getting a decent amount of sleep has therefore been hard to come by. And it has only made these last few weeks even more tiring as a result.

The impact that you have on those you blight spreads far and wide. The heightened levels of pain you have caused me has also added anxiety in my life. At times, I have become so overwhelmed and incapacitated by you that I can find myself unable to function. Physically, it can cause my legs to buckle before giving on me unexpectedly, giving me little time to react. You can also cause brain fog; causing me to remember important information or losing words I am searching for amongst a cloud of thick fog. The added stress and anxiety has become tiring, this constant worry about when this sudden loss of being able to function will occur, even the fear of going out in case of such an attack.

curled up in a foetal position because of pain

It’s tiring having to deal with setbacks that you create; the impediments created by your overwhelming urge to show your continued dominance, causing yet another dreaded flare. The continued knocks to our self-confidence as we once again begin to question our abilities and what we are capable of on any given day.

"It's tiring having to deal with setbacks from chronic pain; the impediments created by its overwhelming urge to show its continued dominance, causing yet another dreaded flare." Share on X

Through difficult times comes the opportunity for educating

Through the exhaustion and tiredness that you create, however, is also the opportunity for educating ourselves about you and what methods we can implement to calm and lessen the effect that you have on my life.

It reminds me of the quote ‘A smooth sea never made a skilled sailor.’ Meaning that through the tough times that you cause, we can learn more about what helps and what doesn’t to come up with a more effective pain management plan for the future.

Time and time again I’m reminded that pain is uncontrollable. You like nothing more than to show your power and dominance, and where there is nothing I can do to quieten your reign of terror. To try and control you, would prove to be futile, and waste precious energy I don’t possess. The only thing I can do therefore is to learn ways to manage your existence.

"Time and time again I am reminded that chronic pain is uncontrollable. Liking to show it's power and dominance. We can only learn ways to manage its existence." Share on X

I have been educating myself on alternative methods to manage you and your unwelcome presence. I have been mainly looking into CBD oil and the positive effects it can have on you, on pain. And I have been learning that there is certainly a lot to educate me about concerning CBD oil!

At the receiving end of your wrath…

Until I take action however, I continue to be at the receiving end of your anger and wrath. Especially at night, when there are no distractions to be found to help ease the burden of pain. I’m forced to receive your attempts to enforce insomnia, as well as the debilitating pain.

And unfortunately sleep does not come, and when I awaken, I observe incredibly dark circles under my eyes. My reflection was expressing the lack of sleep that I received the night before. The need to rejoin the real world calls, I depend on concealer and blusher to disguise the physical effects that you bequeath.

"Living with chronic pain and it's invisibility we are often at the receiving end of judgements and suspicion; believing that we are faking being sick when in fact we are faking being well." Share on X

You are mostly invisible, but disguising the only physical evidence of your existence, I am at the receiving end of judgements and suspicion. When people cannot see something, they often deny its reality. In the case, of illness people assume that we must be fabricating our supposed illness; that because we look healthy than we must be so. What most people cannot comprehend that we are not faking being ill, but are instead faking being well.

I'm not faking being sick' I'm actually taking being well

As much as pain has taken it has also been giving…

I could write a long list of what chronic pain has taken from me, such as loss of independence as one example. However, pain has also been giving me little gifts that are important to remember and appreciate.

"As much as chronic pain has taken from me, it has also given me many gifts and taught me many valuable lessons." Share on X

Chronic pain has taught me some valuable lessons that make it easier to bare living with you every day. You have allowed me to learn things about myself that I may have never learned otherwise. Giving me the knowledge that I’m stronger than I ever thought; the training to be better prepared to face difficult situations as well as future flares. Pain has also given me patience. When experiencing a chronic pain flare, although exceptionally unpleasant, I know there will be an end. I need to wait it out, thus requiring patience.

"Pain has taught me patience. Something I've needed when experiencing a chronic pain flare; knowing there will be an end, I need to wait it out." Share on X

Quieting…

I am now calling on patience now as I wait on this current chronic pain flare to cease and subside. Oh, I know that you will inevitably return but right now I am waiting on you to quieting down the strength of the power you hold over my body. Waiting on the day to which your volume has quietened enough for me to be able to continue with my life without your constant influence.

Regards

Me, Rhiann.