february linkup 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.

As it’s February and generally considered the month of love, I thought I would use this month’s prompts to discern ways we can find beauty and love life despite the significant cost that chronic illness has on our existence.

Adjusting

Adjusting: Verb. Alter or move (something) slightly to achieve the desired fit, appearance or result

The first step to rebuilding life in the wake of a life-changing diagnosis is acceptance. Only by accepting the diagnosis can we then move forward and build a happy and content life despite the unwelcome changes that accompany chronic illness.

"Being diagnosed with a chronic illness is akin to being given new puzzle pieces that we have to learn to fit into our personal jigsaw." Share on X

After acceptance, we can then make adjustments to make room for chronic illness into our new life. Being given a diagnosis of a long-term health condition is akin to be handed new jigsaw pieces. These new jigsaw pieces don’t initially fit the canvas that makes up our lives. Therefore, adjustments are required to install these pieces into our life puzzle.

Being diagnosed with a chronic illness is like being handed new puzzle pieces that we have to attempt to fit in with our life.

Life with a chronic illness requires constant adjustments. Adjusting to a never-ending list of symptoms as new ones develop. Adjusting to new medications and the awful side-effects that accompany them. And adjusting to the new and ever-worsening version of ourselves.

"Life with a chronic illness requires constant adjustments. Adjusting to symptoms, new medications and the awful side-effects that accompany them. And adjusting to a new version of ourselves." Share on X

Adjusting to a new identity, the expectations for ourselves all in order to find a new normal.

Hoping

Hoping: Verb. Want something to happen or be the case

When first diagnosed with a chronic illness, we hope that it will go away. That one day we will wake from a deep sleep, and everything will go back to what it once was.

When we realise and accept that this is merely a pipe dream. And after we had made necessary adjustments to find a place for our new diagnosis, hope evolves into something else.

Although we know a cure is never going to materialise, that we will never get better we never stop hoping nevertheless. We hope that there will be improvements, a hope that life will get better regardless of the permanency of illness.

"Without a promise of a cure, we don't stop hoping nevertheless. Every morning, new hope is born. Hope that medication will suddenly alleviate our suffering. Hope that today, our symptoms will not hinder our plans." Share on X

hope spelt out in wooden scrabble tiles — Every morning, new hope is born

Every morning, new hope is born. Hope that today will be the day when the medicine prescribed will suddenly work wonders and alleviate suffering. A hope that although the symptoms are a constant comrade, that their presence will not hinder our plans.

Sometimes it may seem that hope is a wasted endeavour; wishful thinking that may have little chance of becoming a reality. Hope however is much more powerful that we often realise. It allows us to see a light when surrounded by darkness; the light informing us of better days ahead. Most importantly, hope is the thread that allows us to hold on and survive the worst of days.

"Hope allows us to see the light despite being surrounded by darkness; it informs us that better days are ahead, allowing us to be able to survive the worst of days." Share on X

Surviving

Surviving: Adjective. Continuing to exist; remaining intact

When first being diagnosed with a chronic illness and confronted with symptoms, it is tempting to push through and continue as if they don’t exist.

"Pushing through the symptoms of chronic illness can often do more harm than good. Sometimes we need to allow ourselves a 'day of survival.'" Share on X

Often, however, to do so does more harm than good and only serves to prolong the flare. What we need is to allow ourselves a ‘day of survival.’ To let ourselves succumb to the debilitating and unpleasant symptoms and to allow ourselves a day of rest for self-care and recuperation.

a hot cup of tea and a pen resting on top of a journal resting atop a duvet — On the worst days often the kindest we can do for ourselves is to allow us a day of survival for much needed rest and recuperation

A day of recuperation will not be the same for everyone and depends on the preferences of the individual and what the symptoms will allow us to do. But it may include a Netflix binge-watching session, or gaining comfort from a favourite book. Or even the luxury of a warm bath or shower has the power for a moment of indulgence.

It can be a difficult transition to make, especially if we are used to living a busy and hectic life. But when living with a chronic illness, there are days when we are surviving instead of living. Days when we are moving forward at a snail’s pace. But we also learn that this OK,. Allowing ourselves to slow down we are best able to appreciate and be grateful for the positive things in our life, for those that chronic illness cannot touch.

Befriending

Befriending: Verb. Act as or become a friend to (someone), especially when they are in need of help or support

To find beauty and love life again despite the darkness and ugliness that chronic illness unveils it can be useful to befriend our condition. It’s never going to become your best friend, and you will find yourself in many arguments with it, but is going to be something that we will have constant interactions with every day for the rest of our lives. To live a more successful and gratifying life despite chronic illness, we need to better understand it better.

hands making a love heart sign in front of a sunset — We need to learn to befriend our conditions and ourselves for a life living in harmony despite a chronic illness

As such, it’s essential to build an amicable relationship with our illness and our body. To set boundaries, so that we do not make foolish mistakes and trigger or make worse the symptoms that accompany our new permanent ‘friend.’

"Befriending chronic illness allows us to be able to set boundaries and not make mistakes which could trigger our make worse the symptoms that accompany our new 'friend.'" Share on X

In order to live well and in harmony with a chronic illness, therefore, we need to learn our limits, and to know what we can and cannot handle before symptoms makes their presence known.

abstract picture of love spelt out in block letters

And to know and understand what a ‘bad day’ and a ‘good day looks and feels like for us. If we are in the midst of a bad day for example, and we are aware of that, we can, therefore, take steps to better look after ourselves and prevent it from getting even worse.

By learning to befriend and make peace with this new companion in life, also makes it easier to understand and accept the limitations they bring. By understanding and knowing what is happening and why I’m better equipped in handling the emotional fallout.

It is essential for our well-being that we listen to our bodies and that to what it is trying to tell us and act accordingly. Becoming friends with illness is not a cure, however, but doing so will make life with it much more manageable. And allowing us to spend less energy so we can use it on more enjoyable pursuits.

Also, we also need to learn to befriend ourselves in the wake of a diagnosis. To allow us to get to know the new person that the diagnosis forces us to become, and the one who is different to whom we were before. We are of course the same person we were before, but the changes and challenges chronic illness presents we feel different. Befriending the new us allows us to treat ourselves with compassion and love.

"In the wake of a diagnosis, we also need to befriend this new us that chronic illness forces us to become, and different to whom we were before." Share on X

Awakening

Awakening: Noun. An act or moment of becoming suddenly aware of something

After first being diagnosed with a chronic illness, we have a new awakening to the knowledge that life will never be the same. To awaken an understanding of this new diagnosis and how we can feel as well as possible in this ‘new’ body.

"A sudden diagnosis awakens the knowledge that life will never be the same. And by doing so, we need to understand this diagnosis and how to feel well in this 'new' body." Share on X

i am grateful ceramic plaque in the shape of a love heart — Allowing ourselves to feel gratitude awakens positivity

Living with a chronic illness is undoubtedly difficult. There are often many more downs than up. Despite this, however, life with a chronic illness awakens the capability to practice gratitude.

The bad days, which are plenty when living with a chronic illness makes us appreciate those rare days even more. Practicing gratitude and becoming consciously aware of everything we are thankful. Gratitude reintroduces light into our life where chronic illness had previously trapped us in the dark.

"Living with the many limitations that accompany chronic illness, however, awakens a new appreciation and gratitude for the rare good days that we do get to experience." Share on X

And practicing gratitude helps to change a negative mindset into a positive one, allowing us to see and appreciate the beauty in life. Becoming more positive has an apparent beneficial effect on our mental health, and allowing for developing more appropriate coping strategies.

These are just some ways to find beauty and joy in life with chronic illness. How do you see beauty beyond a life with chronic illness? Feel free to share your ideas in the comments.

February Link-Up Party With A Chronic Illness

After a long hiatus from blogging, I am starting to feel normal again, or as normal as I can possibly feel and to help acclimatise myself with blogging again, I once more am taking part in the February Linkup Party with Sheryl from ‘A Chronic Voice.’

The prompts for this month are:

Adapting
Practicing
Realising
Celebrating
Inviting

Here we go…

After years of living with a neurological condition and its constant fluctuations, you would think I would be used to it and had fully adapted to a new reality of living with debilitating symptoms. But, even after many setbacks, or ‘flares’ as we in the chronic illness community like to call them, our new reality of like with illness is one we never fully adapt to or accept.

I thought I had accepted and adapted to a new reality of a life of symptoms including dizziness, vertigo as well as managing to continually walk on trembling legs which you can never trust not to collapse from under you. But after spending many miserable weeks, with these permanent and unrelenting symptoms at its worst, I again came to the realisation that acceptance is not the end of the journey of coming to terms with a diagnosis of a long-term health condition. Instead, it is a destination that we have to revisit again and again, especially when dealing with dealing with our personal storms.

pexels-photo-461775 — Acceptance is a journey and not the destination.

In the meantime, I am exploring my toolbox of coping strategies that I’ve acquired over the years. Insights and advice gained from mental health professionals, friends and fellow ‘spoonie’ warriors, books and television programmes, all of which has helped me a great deal and helps to shelter me from the worst of the storms. I don’t know when the worst of these symptoms will pass, but until then I will do my best to find shelter until this particular storm dissipates.

In a weird twist of fate, just when I am experiencing a severe storm in regards to my health, I am enrolled in a course about Acceptance-Commitment Therapy. The aim of Acceptance-Commitment Therapy (ACT) is to help people accept what is out of their personal control and to commit to actions that improve and enriches their lives. Most of the course has been very much based on its theory, which has been very interesting but some of the course has been teaching us psychological skills to better deal with painful thoughts and feelings.

Through this, I have been practising meditation and mindfulness techniques to lessen the effects that pain and the negative thoughts have on my everyday life. It is not easy and requires much practice but I can start to see the benefits, and it had helped when the pain has been at it’s worst as well as keeping me calm when feeling stressed and overwhelmed.

pexels-photo-226718 — The ACT course and mindfulness has helped in allowing me to let go of the things that I cannot control and instead focus on what I am able to control

Since starting the course, and seeing the benefits that the course has had on my well-being, I began realising that I can still have fun, have enjoyment and contentment while in pain. Recently, Mum and I went to the theatre to watch Flashdance (an unexpected Christmas present!), but while there I was experiencing significant pain in my legs as well as a myriad of other symptoms including vertigo and visual disturbances. When they suddenly came on, I felt a wave of great disappointment that my rare night out was spoilt because of my neurological condition. But, after practising some of the techniques we have been learning during the course in ACT, I managed to divert my attention away from the nuisance symptoms and to what was going in front of me and the fantastic music and dancing.

And it worked! Because of the severity of the symptoms that seemingly appeared from nowhere, I felt that I wanted to leave and go home to the safety and security of more familiar surroundings. But, I didn’t and made it through the entire show and had a great time (despite the incident when my legs gave way when we were leaving!). It was then that I realised that chronic pain and fun doesn’t have to be irreconcilable.

It is little victories like the theatre trip which I am celebrating this month. It may seem small and trivial, but they are monumental considering the effect that symptoms of chronic illness have on our lives. Not cancelling on invitations, pushing through symptoms to get our normal chores done or just doing something we thought we never thought we could do are all worthy of celebration. I know just how difficult living this chronic life can be and how it affects your entire life and what you are and aren’t able to do, so celebrate your victories as I know how hard you’ve worked to achieve them.

pexels-photo-341858 — Let’s celebrate everything that we achieve especially as chronic illness gives us many obstacles stopping us from doing so…

To end, I think I would like to invite more opportunity into my life. Perhaps, by expanding my writing beyond the blog. Writing is something that I enjoy immensely and something that I am passionate about so I would love to be able to do more of, so if anyone has any suggestions or offers, please let me know! Loneliness and isolation is again something that I have been struggling so am inviting more opportunities to meet new people, and expanding my social circle. Of course, it is difficult when considering that I am unable to get out of the house on my own or even that I am not invited to attend social occasions by those that I do know. But hopefully, by participating in more courses like the ACT course, I am able to meet new people and widen my social circle and find my own tribe.