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Medical Definition of Flare: 1. an exacerbation of a chronic disease. Often referred to as a flare-up, a flare occurs when symptoms of a disease that has been present for a time suddenly worsen. A flare is a transient worsening of a disease or condition that eventually subsides or lessens.

One of the most frustrating and stressful aspects of living with a chronic illness is the unpredictability. The never knowing how you are going to feel or any given day.  Never knowing if today is going to be the day when symptoms are going to worsen suddenly.

[Tweet ” Concerning chronic illness, a flare occurs when its symptoms suddenly worsen.”]

We can become hyper-vigilant, analysing every pain or unusual sensation as a potential precursor for an oncoming flare.  It can feel powerless; we control the tiniest aspects of our health we can such as pacing ourselves, ensuring we get enough sleep and maintaining a good diet. But still, we find ourselves in the midst of a flare.

And when we are in the midst of a flare, there is still worry and uncertainty.  Just as we are in the dark as when a flare will occur, it’s also not known how long it will last.  The increased disability, isolation, loneliness, and guilt only add to the stress.  And the longer the flare, the greater these stresses impact us.  However, these stresses can not only be consequences of the flare, but they also have the potential to prolong it.

Living with chronic illness and pain is much like riding a rollercoaster!

Living with a chronic illness and experiencing a flare is very much like riding a tumultuous rollercoaster.  A rollercoaster with many ups and downs, twists and turns, but not knowing when they are going to occur.

[Tweet “Experiencing a flare is like riding a roller coaster – lots of ups and downs and twists and turns!”]

In my last post, ‘Becoming Lost During a Flare: Revisiting Acceptance‘ I discussed the effect that my latest flare has had on not only my physical health but also the impact it has on my emotional health.  The anxiety and loss of confidence that has resulted from the physical and psychological losses that have occurred during this particular flare.  The symptoms have become a thief, stealing little things which are essential to me and help me function within the world around me.

Given that the experience of a flare is negative, how can we survive while going through one?

How To Survive a Flare

Surrender

It’s interesting that this word has such negative connotations.  For many, surrendering means giving up.  The reality is that it means letting go.  Before, acceptance when a flare would occur, I could feel myself tensing, trying to fight against it, to make it go away. Doing so, however, actually had the oppositive effect.  Instead, the flare would fight back, becoming stronger.  By surrendering, we choose to accept the reality as it is in the moment.  And when we accept the reality, we are more likely to take the steps needed to take care of ourselves appropriately.

[Tweet “When we accept the reality, we are more likely to take steps needed to take care of ourselves.”]

Photo by Katii Bishop from Pexels

‘This Too Shall Pass’

As stated in the definition at the top of the post, a flare indicates as a transient worsening.  Transient of course meaning fleeting or short-term.  It will eventually subside.  No matter how many lows there are on our roller coaster, we will ultimately find the highs again.  And we must remind ourselves that during the darkest times; to hold onto hope.

[Tweet “It’s important to remember that flares are fleeting and will eventually subside.”]

Don’t Blame Yourself

When we are experiencing a flare, there is a tendency to look back on what we have done which could have triggered it. To blame ourselves for our current predicament and think that we could have avoided it had we done x, y or z. The reality is, however, that it is not our fault.  Our bodies and symptoms are highly unpredictable with its own rules and agendas; flares are often unavoidable and going to occur whatever we choose to do.  Feeling guilty is not productive and is not going to make you feel better.

[Tweet “Feeling guilt is not productive; symptoms are highly unpredictable with its own rules.”]

And on those occasions that the flare was a result of our actions, we can use it as an opportunity for growth.  To learn from our mistake and to resolve to do better in the future.  Blame and recriminations are not going to help you feel better.  What will help is to return to those self-care behaviours (such as resting) that will ease the burden of suffering worsening symptoms cause.

 Remind Yourself of Your Accomplishments

While in the midst of a flare, we are unable to achieve very much.  Regardless of the size of our to-do list, we are unable to gather the strength or motivation to complete the tasks.  As a result, it can lead us to feel unproductive, as if we are failing ourselves and those around us.  We never, however, celebrate and reward ourselves for which we can do, especially in the face of adversity and limitations.  So, ditch the to-do list and instead make a list of the things you have done despite chronic pain and other debilitating symptoms!  And reward yourself – enjoy your favourite snack or put on a feel-good film.

[Tweet “During a flare, ditch the to-do lists and congratulate yourself on what you have achieved.”]

Create a Self-Care Box

As we never know when a flare will occur, or even how long it will last.  Preparing a Self-Care Box is something you can create beforehand to help you during times of extreme worsening of symptoms. By being proactive and making a plan before its onset, we remove the challenge and stress of coming up with a sufficient self-management plan, which can be difficult when we are in the midst of one.

[Tweet “A Self-Care Box should contain things which make you laugh, to help calm you, and ease suffering.”]

A self-care box should contain various items that comfort and please you; things that nourish your soul and help you cope during times of stress and suffering.  It could include an MP3 player full of songs that help relax and makes you happy.  It could also contain meditation and relaxation exercises which are excellent at reducing stress.  Other items might include magazines and books, inspirational quotes and affirmations, a journal for when you feel well enough to write.  I always add my favourite pair of comfortable pyjamas.  Things to make you laugh, things to make you calm, and ease your suffering. These are all ideas on what to include, but a self-care box should be personal to the individual.

Find Distractions

We all need a break from the chronic pain and other debilitating symptoms. However, when experiencing a flare this can be easier said than done.  As much as you can do, find a break and solace from crippling symptoms through distraction.  Read a gripping book. Watch a mindless TV show or an utterly magical film.  Read articles online about a subject that fascinates you.  A distraction, of course, will not take the pain away entirely but by taking attention away from it, but it might make it easier to manage.  It can also help prevent catastrophising thoughts that can exacerbate symptoms.

[Tweet “Distractions can help prevent catastrophising thoughts which can exacerbate symptoms.”]

Connecting with others also experiencing chronic illness and chronic pain can make experiencing flares easier to deal with

Seek Support From Your Tribe

Attempting to endure chronic illness on your own can be isolating, leading to anxiety and depression.  It can also worsen the already debilitating symptoms, prolonging the duration of the flare.  Reaching out to others for support and encouragement when pain levels rise and symptoms intensify.  Just talking about how you are feeling, and confiding the extent to which you are suffering to those who understand and can help calm the ferocity out of a flare.  Even better is talking to those who also experience chronic illness and pain, and who can prove to be an excellent wealth of information for coping with pain and other symptoms.  Join a support group or community for those living with chronic illness and pain, and be there for others when they are in need of support.

[Tweet “Reaching out to others who understand can help calm the ferocity out of a flare.”]

Those are only seven tips on how to survive a flare, but what are some of your favourite ways to cope when they suddenly occur?  Feel free to add your advice to other warriors below…

nhbpm_daycount-26

Welcome to the twenty-sixth day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Top 3 Tuesdays: List three questions you have for other patients.

As I have yet to meet another patient with the same condition as myself, I have decided to ask questions that could be answered by any patient with any chronic illness.  This prompt could provide excellent dialogue between myself and readers of the blog, so please comment if you have any answers to the questions that I will ask during the course of this blog post.

How do you make being bed-ridden more fun?
How do you make being bed-ridden more fun?

How do you make spending time in bed fun?

As I am writing this post; I am doing it from my bed.  Today, my legs have decided not to work and so I am forced to being stuck in bed; unable to walk or even stand.   I hate being stuck in bed; I find it dull and tiresome as there is only so much one can do from bed.  I am fortunate to have my own television set in my bedroom, which thanks to my parents has access to satellite television, as well as my iPad in which I can watch films from my own collection or through those shown on Sky or through Netflix.  However there is only so much reading and watching television a girl can do before becoming bored.  Therefore, one question that I wish to ask other patients is: How do you make spending time in your sick-bed fun and tolerable?

How you stay calm before attending hospital appointments?
How you stay calm before attending hospital appointments?

How do you cope with hospital appointments and make attending more bearable?

I know that no patient likes attending hospital appointments, but no matter how much I try, I am always so nervous before leaving the house to travel to the hospital.  When that letter first lands on my doorstop; the nerves begin it kick in, and the appointment is the only thing that is on my mind until the appointment day arrives.  The night before, I feel sick and anxious, with thoughts running through my mind about what will happen at the appointment; what the doctor might say and generally imaging all the worst case scenarios.  As a result my next question for other patients would be: How do you cope with endless hospital appointments? How do you relax before an appointment?  Are there any routines you have to make the day fun and tolerable?

How to keep calm and carry on with chronic illness...
How to keep calm and carry on with chronic illness…

How do you cope with living with a long-term health condition?

My my final question for patients with chronic illness, like myself would be related to how the cope when the illness becomes too much to handle.  Lately, the dizziness that I constantly live with anyway, has become even more severe.  In addition the pain, fatigue and weakness in my legs has also worsened.  As a result of struggling with this, the depression that often accompanies chronic illness has reappeared and I have been struggling to cope in dealing with everything.  So, my final question, would be: How do you continue to cope when your illness becomes too much to handle? How do you distract yourself from the pain, depression and other symptoms you experience?

There are my three questions for other chronically ill patients.  Do you have any other examples of questions to ask to other patients?  As ever would love to hear your thoughts, comments and suggestions! And don’t forget to comment below if you have any answers to the above questions.  Thank you xxx

Today I am participating in WordPress Daily Prompt Challenge.  I have never done so before, but after seeing today’s prompt, I decided to do so, as it fits in nicely with what my blog is all about – me living with my neurological condition.  The prompt is entitled ‘Take Care’ and asks the following:

When you’re unwell, do you allow others to take care of you, or do you prefer to soldier on alone? What does it take for you to ask for help?

 

 

This is a fantastic prompt for both me and spoonies everywhere, as living with illness is what we do on a daily basis; day in and day out we are unwell.  The prompt, perhaps was meant for those who are, for the majority of the time healthy – asking when in the instances they are ill, what do they like to do – but I am going to write the prompt from my perspective; as a spoonie living with an illness 24 hours a day, 365 days a year (366 days in the event of a leap year!).

Living with a chronic illness is very much like being in constant war with our bodies.  Sometimes, the illness wins the battle; leaving our bodies drained of all energy and will to carry on.  But with determination and very often needing the help of others we battle on, determined to winning the overall war.  Each individual though obviously has their own way of dealing with their illness, but whatever that coping strategy may be we have no choice but to solider on and get through it the best we can; we all need to live our lives the best way we can, whatever our individual circumstances may be.

Living with a neurological condition, when I am bad because of it, I have very little option but to rely on the help of others to see me through.  My balance and legs are bad much of the time; I am unable to stand for very long before they collapse from under m, leaving me a crumpled heap on the floor!  Sometimes, my legs are so weak that I am unable to get out of bed, and so am reliant on others to help me to the bathroom, or to bring me food and drink whilst I am confined to my bed.

Often, I am too stubborn to ask for help; preferring to soldier on regardless to how my body feels.  But, as I am lying on the floor, dizzy, legs too weak for me to be able to get back up, I am reigned to the fact that I am in need of help and call for help (if I am on my own, however, I need to press my lifeline for someone to come and rescue me from the floor).  Perhaps it is hard to ask for help because, the condition has progressed gradually, and a few years ago, I didn’t need this level of help in my daily life; I didn’t need someone to help me off the floor after a fall, or needed supporting when walking around the local shops. In my head, I am still abled and not disabled…

That is not to say that I don’t need my alone time – I do; I like sometimes to shut myself in my bedroom from my parents and the outside world.  To have some peace and quiet is all I crave when things become too much; often when I am feeling incredibly low because of the condition is bad.  I like to stick my headphones on and listen to music, watch a film on Netflix, or even read a book to take me away from the reality of illness and to escape to another world.

Perhaps the way of getting through illness, is not to soldier alone or even to ask constantly for help, but to find a healthy balance between the two…