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 November I am using the prompts to discuss the before and afters of life with a chronic illness.
Life is messy. It comes with many responsibilities and obligations, and as we become older, these only increase. One such responsibility and one that often is accompanied by stress and worry involve financial responsibilities that characterise adult life.
Becoming an adult, although exciting; the thrilling prospect of freedom also coincides with the realisation of the financial burden of everyday life. The daily life of being an adult. The sudden understanding of everything that needs paying for when a responsible adult.
The Debt Incurred By Fun and Spontaneity
When becoming an adult with a chronic illness, there is an added financial burden — a sudden and new responsibility for paying for all the paraphernalia that accompanies life with a long-term condition. When living with a chronic illness, medications need paying as well as aids to make life easier when symptoms become out of control, and so on.
But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken. Often there is an apparent reason for the sudden flare in symptoms or a decline in energy levels. Sometimes, there is no apparent reason at all, and are left speculating the reason for the unexpected presence of symptoms.
"But the continuing paraphernalia of life with a long-term health condition is not the only things that need paying. There is also a hefty payback for every expansion of effort and energy undertaken." Share on XThere is now no room to be spontaneous and reckless with our time. Doing so doing can provoke and anger the symptoms that are always present. As much as we take delight in going out, there is, unfortunately, a payback of the effort and energy that the given fun had required.
Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back. The payback of every moment of fun and spontaneity is a debilitating increase in the symptoms that accompany such conditions.
"Life with a chronic illness is like being indebted to a loan shark; one that has interest rates so high that there is no possible way we can pay it back." Share on XPlunging Into The Unknown Possibilities of The Future
We often like plunging into the unknown possibilities that the future offers. We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread. Those events and fun outings that we would once look forward to now induces fear due to the uncertainty that surrounds life with a chronic condition.
"We look forward to taking a leap and diving into new adventures. When living with a chronic illness, however, the future now arouses feelings of anxiety and dread." Share on XWe are unable to pencil in the dates when it would be most convenient for symptoms to appear; they do so with no concern or care for the plans made in advance. Instead, arrangements are made with no knowledge of how we are going to feel on the day in question. Or the state our bodies are going to be in on the day in question. Plans that should induce joy and excitement now only prompts thoughts of ‘what if.’
We look ahead, and instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering.
"Instead of seeing the unknown possibilities that the future holds, we can only see the pain and suffering that illness inflicts. It can be quite a burden when the only certainty of the future is one of pain and suffering." Share on X“No, you may not go to the ball!”
Ah, remember the blissful and carefree days before the existence of illness and its numerous symptoms? The many invitations that we’d receive to ask for our attendance to social gatherings hosted by friends or family. The opportunity to escape the monotony of a night at home; the promise that we will go to the ball.
Now, the future and the continued presence of chronic illness, the doors to such balls are firmly closed to us. Usually, we begin to be overlooked, no longer invited to parties because illness has forced us to cancel on numerous occasions in the past. Or, sometimes people believe that we will not be physically well to attend. Our fairy godmother no longer in existence, and no longer able to go to such festivities.
Invitations that now arrive in this new present and continued future take the form of letters for doctors and hospital appointments. Those living with a chronic illness will know the difficulties of going out when plagued with disabling symptoms. At times, it can become so bad that the only time we do go out is to such appointments.
"The future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out." Share on XThe future, which once gleaned with endless possibilities of nights out, is now blighted by illness. And the future replaced with attending countless hospital appointments in place of nights out.
Organising Life Around The Changes That Illness Brings
The past, once full of spontaneity and life led on impulse becomes no more with the arrival of a chronic illness. The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations caused by this permanent new companion.
"The future, driven by pain and illness, now needs our lives organising around the changes that it brings. Our days, once lived on a whim, becomes carefully organised, attentive to the limitations of chronic illness." Share on XLife now and in the future, are unable to cope with days crammed full of activity due to such limitations chronic illness inevitably brings. So we must reevaluate what is most important to us, and what we can do to organise our days into something manageable.
To create a ‘new normal’ out of the broken and destructive pieces of our old lives.
Our calendars once crammed full with future parties, and all the invitations that asked for our attendance now erased. In its place, a carefully organised calendar detailing the many doctor and hospital appointments that accompany this new chronic life.
None of Us Knows What The Future Holds
Oh, the future which in the past seemed so bright and exciting. The endless possibilities that it once promised now seemingly lost forever. Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it.
"Although none of us knows what the future holds, those living with a chronic illness knows that it is one filled with pain, tears, exhaustion and the many other things that accompany it." Share on XStill, there are a million questions and uncertainties that the future holds out in its hands. Even living with the certainty of illness, there are still endless possibilities to explore if only we find the courage to do so.
Yes, the possibilities might be sparse and limited due to the many limitations that lie in the wake of illness, but they do exist. And for that provides a glimmer of hope and promise.
The Before and Afters of Life With Chronic Illness
When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness. It is up to us to make the most of the unchangeable situation.
"When diagnosed with a chronic illness, life is split by the before and after. Life now defined by the before and afters of life with a chronic illness." Share on X
6 Comments
I have a similar-looking calendar. An excellent post, Rhiann. Painful to read when it’s so relatable. The before/after is quite heartbreaking. xx
Thank you so much as ever, Caz! Yes, the before and afters of life with a chronic illness is incredibly heartbreaking. Just another horrible reminder of what could have been, adding to the grief of the reality of this new existence.
xx
Brilliant post Rhiann. I find being overlooked and forgotten to be invited to events one of the things that still get to me even though I would rarely be able to attend. It stings to feel forgotten. But you’re also right in saying we need to muster courage to keep going. Lovely written piece thanks for sharing this month xx
Thank you so much for you lovely comment Niamh! Yes, being overlooked and forgotten is incredibly difficult, and something that still really upsets me despite it happening so many times over the years! It’s even happened with members of my ‘family’ which I have found even more upsetting. I think I often find it difficult as it’s another reminder of how much I’m stuck in the house and a potential night out and away from home just adds to the grief of living with this condition. I am just so sorry that this has happened to you too, it makes me so mad when it happens to lovely people! ?♀️
Ahh the fun of speculating over new/increased/ sporadic symptoms…I hear ya fellow adult!
Thank you so much Naomi!