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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 month, I will be discussing the need to rest and the guilt that comes with needing to do so.

Balancing The Need to Rest And The Guilt For Needing To Do So

When living with a chronic illness, we do so in an attempt to balance our own set of balancing scales. And every day, we are faced with choices; choices that will inevitably tip the balance in favour of either ourselves or to the chronic illness itself. Every decision, every activity, every chore, and errand is strategically planned in the endeavor to stave off a flare. And to keep the scales tipped in our favour.

"When living with a chronic illness, we do so in an attempt to balance our own set of scales. Every day, we are faced with choices; choices that will tip the balance in favour of either ourselves or to the chronic illness itself." Share on X

Participating in self-care, and adopting strategic pacing techniques plays an essential part in ensuring the scales remain balanced. The problem, however, that although chronic illness plays a significant role in our lives, it is not the only part. Life does not stop or pause when during a flare; life goes on, and still, we have responsibilities that we need to satiate.

When living with chronic illness we often need to balance the need to rest with the guilt of needing to do so

Justifying Taking The Time For Rest

As such, it can be difficult justifying taking time to rest when there is so much that needs our time and attention. How can we justify the time for rest and recuperation when chores and errands require attention?

Often we feel that the severity of pain and the never-ending presence of other symptoms are enough justification for slowing down. For lounging around and taking it easy while attempting to wrangle and maintain control over seemingly uncontrollable symptoms. But as these quiet and sedentary days stretch on, as well as the current flare, a surge of guilt begins to rise.

"As the quiet and sedentary days stretch on, as well as the current flare, a surge of guilt begins to rise when needing to rest and take things easy." Share on X

Although taking the time for recuperation against the backdrop of a flare is essential to our health and well-being, the overwhelming guilt and recriminations still make it difficult to justify the need to ourselves when there are so many demands for our time and attention.

"The overwhelming guilt and recriminations still make it difficult to justify the need to ourselves when there are so many demands for our time and attention." Share on X

The Starting Symptoms Which Precede A Flare

There is a tendency to push through to complete errands regardless when symptoms start to become out of control. To stubbornly ignore the start of an oncoming flare and do more than our body can handle. But, doing so, however, only worsens these ‘starting‘ symptoms and thus exacerbates the approaching flare.

We should begin starting, to see these increased symptoms as warning signs. And to start to listen to what our body is telling us. To attend and rest or participate in self-care activities when we are in need to do so.

"We should begin starting to see these increased symptoms as warning signs. And to start to listen to what our body is telling us." Share on X

Illness And Pain: A Brutal Teacher

But how do we learn the subtle signals our bodies are telling us? Experience. As C.S. Lewis once wrote, “Experience: that most brutal of teachers. But you learn, my God do you learn.” And there is no more a brutal teacher than pain and illness.

Experience: that brutal of teachers. But you learn, my God do you learn.

As much as experiencing a flare is horrendous, each one can teach us about living with chronic illness. The experience of each flare enables us to analyse the symptoms and sensations that precede an attack allows us to learn when we need to stop and rest. And as such, when resting when needed, we can learn to lessen the impact of future exacerbations.

"The experience of each flare enables us to analyse the symptoms and sensations that precede an attack allows us to learn when we need to stop and rest." Share on X

It is not only the analysis of the signs and symptoms preceding an upcoming flare that can be useful. It can also be helpful analysing those behaviours and actions that help minimise the destructive impact they cause. For instance, having a relaxing, warm bath may help alleviate pain. Or watching a favourite film or TV show can help distract from the extremely bothersome symptoms that plague everyday life.

Analysing Pain and Symptoms And Concluding On How To Deal

Whatever it may be, by analysing the results of self-care behaviours, we can then determine what and what does not help when we are in a flare. Concluding, everything which does and does not help in reducing pain or the impact of other symptoms makes coping with such intense and debilitating flares more manageable. Furthermore, interpreting the signs and symptoms that precede a flare, we can use these to know when to rest in the future. It may not help stop a worsening, however, but doing so could help minimise the impact it would otherwise have had.

curled up in a foetal position because of pain
"Interpreting the signs and symptoms that precede a flare, we can use these to know when to rest in the future." Share on X

Experience and the ongoing analysis of the accompanying symptoms of chronic illness can also help us conclude when something is not right. After living with constant illness for so long, we become somewhat intimate with our body, and know when something more is going on and need medical intervention.

Planning On Moving Forward; Planning For Future Flares

And when we know that which helps us cope, both physically and emotional we can plan for the next flare. Planning enables us to prepare suitable contingency plans for when in need of rest and recuperation for our physical and emotional well-being. And it also allows the opportunity for planning a flare kit. A flare kit is one in which contains the essentials that help calm and please. Comforting items that help you to cope during a time of suffering.

"Planning enables us to prepare suitable contingency plans for when in need of rest and recuperation for our physical and emotional well-being." Share on X

After experiencing numerous flares over the years, I have learned the importance of planning rest. And planning for the next eventual flare. Because the only certainty when living with a chronic illness is that there will be another.

"I have learned the importance of planning rest and planning for the next eventual flare. Because the only certainty when living with a chronic illness is that there will be another." Share on X

And we must also learn to let go of the guilt when in need of resting. Chores and errands can always wait, but looking after our health and well-being should always be our priority.

Alternative Cover for Balancing The Scales Between Guilt and Rest

These past couple of days, I have been experiencing the severe trembling sensations in my legs.  Well, I have these sensations all of the time, of course, however the trembling has been somewhat more severe recently.  It is not just these sensations which I have found to be particularly troublesome of late; the fatigue, and the pain associated with the spastic paraparesis have also been bothersome.  At times, living with all these symptoms as well as the constant dizziness has been increasingly difficult and miserable.  Everyone reading this who also experiences chronic illness, will know that when experiencing a relapse, or a bad flare regarding our symptoms, you need to balance the amount of physical activity whether it be exercising, going out or doing chores around the house, with resting your body and taking a break from activity that may exacerbate symptoms.

And I have been doing this; I have listened to my body and took a break from attending the gym, as the trembling in the legs on the day I usually visit was particularly bad.  I even had to cut short my day out with my carer as I felt too unwell and tired to go anywhere else, on that particular day.  However, I have also found that whilst I was balancing the amount of physical activity I was doing and resting; the symptoms were still not improving.  So, when Thursday arrived, and as I hadn’t been out for a few days, and felt miserable as a result, I decided to thrown the rule book out of the window and enjoy the day without worrying about symptoms or maintaining that balance of physical activity with resting.  Of course, on the day I needed to take my wheelchair because of the severity of the trembling in the legs, but was determined that despite all this I was going to enjoy the glorious weather and spend the day away from my bed and the same four walls that I had been cooped up in for several days.

I am so glad that I went out despite not feeling my best and whilst battling severe symptoms.

I had a really enjoyable day out; the weather was gloriously warm and it felt so lovely to be out of the house and feeling the warm sunshine on my skin.  The symptoms, and especially the trembling in my legs were still so bothersome that I was unable to go to the gym, so we decided that instead we would spend the day visiting a little town near to where I live called Cowbridge. I had previously only been there once, and not for very long so thought it would make a change to visit somewhere relatively new and going into little shops and boutiques that I had never experienced before.  I even managed to treat myself to a gorgeous ring that I had seen online by one of my favourite jewellery designers Annie Haak, but had been unsure of purchasing as I was worried that it would not fit my very small fingers!  However, whilst browsing the shop windows in Cowbridge, we came across a little jewellery store that stocked these very same rings!  And after trying on the ring and found that it did fit my fingers, I bought it.  I am so pleased with my purchase and is a lovely reminder of our day out and triumphing over my symptoms.

The gorgeous Annie Haak adjustable ring that I bought for myself
The gorgeous Annie Haak adjustable ring that I bought for myself

“When we are experiencing more bad days then good, we need to make the most of those good days” (Click to Tweet)

The day was not just spent shopping; part of the day was spent relaxing in this pretty and scenic gardens that my carer came across on a previous visit to Cowbridge.  It was so nice just to sit and relax amongst the beautiful and colourful flowers.  It also created the perfect time to take some photographs to commemorate this splendid day out that I enjoyed so much.  In my experience of living with chronic illness, is that when we are experiencing more bad days than good, we therefore need to really make the most of those good days.  Living with a chronic illness, it is so wonderful to make lovely memories that we can look back on during the bad days and reflect upon.

The past couple of days after this day out has been very bad; the trembling in the legs were once again very severe, more so than before, and left unable to fully function.  Do I regret the day out now?  No, absolutely not.  As I said before, living a life with illness, where you experience more bad days than good, we therefore have to take full advantage of the days which are good.  Although it was not a particularly good day health-wise on this day, I felt that I could physically do more than previous days and so took full advantage.  I may be suffering after, however but I still have those lovely, positive memories to look back on and a gorgeous ring to admire.

So, although rest is vital and important when living a life with chronic illness, sometimes however it is just as important to sometimes throw the rule book out of the window and go and make memories to cherish and look back on when illness prevents us from doing anything else.  Let’s go out and live our lives, and take full advantage of the rare good days and make glorious memories in the process…

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