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The one important component to survive a life with an invisible illness…

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Imagine you are a marathon runner, struggling at the half-way mark. You are fatigued, suffering from muscle cramps and out of breath. However, you are determined to complete the marathon and cross the finish line.

So, what spurs you onto the finish the marathon despite the pain and fatigue?  I can imagine that one thought that would help is to know that the end is in sight and awareness that the pain and fatigue will eventually end.

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Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure

Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?

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In my opinion, one crucial component of surviving life with a chronic illness is hope.

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Hope that despite living with debilitating and life-altering symptoms, that we can still lead a ‘normal’ and happy life.

Hope that the symptoms will eventually ease.  Hope that one day there may be even a cure.

For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced; many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.

The hope that everything will be OK.

Hope is essential for every person, but perhaps it is more necessary for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of pain, hurt and depression that living with an illness can cause.

Hope motivates us to push forward and to keep thriving through even the difficult times.  In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day.  Maintaining hope during hardships can make it slightly less difficult to bear.

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Before the diagnosis of a chronic illness, we have hope for the future and the plans we create because the possibilities that are ahead of us are endless.  However, after a diagnosis of a chronic illness, there is suddenly a huge question mark over our futures and the possibilities we envisioned for ourselves.

The future is uncertain.  Due to the uncertainty of the future, our faith waivers.  How do we maintain hope when the life we had known has suddenly changed?  How do we continue to hope when we experience more bad days than good?

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The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.

Ergo, we can choose to be negative and resentful towards our situation. Or we can choose hope and positivity.

I often used to focus on all the ways that my neurological condition limited my life.

Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.

This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.

Now, I try and focus on everything that I am still able to do, and especially those that give me joy and happiness.

It instills me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.

Anyone reading this who is is living with a chronic illness, know that you still have something to offer and have lots that you are still able to do despite there being things that you can no longer to do.

Illness is hard; there is no doubt about it.  From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.

But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.

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Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue.

These little delights do not have to be expensive or grandiose but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album.  Whatever works for you.

Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.

To conclude, hope is just one of the components to be able to survive life with chronic illness.

Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.

Allowing illness to consume our lives, and focusing on the limitations that it places upon us can, therefore, lead us to lose our identity to our conditions.

As the spiritual teacher Eckhart Tolle said: “As long as you make an identity for yourself out of pain, you cannot be free of it.”

By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.

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Holding on and letting go…

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Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.

At other times, however, symptoms are out of control; life feels as if you are on a battlefield –  your condition and its symptoms are at war with your brain and the rest of your body.

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During recent times, my experience living with a neurological condition has been the latter – with symptoms becoming out of control, and everything being a struggle.

I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once.  The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time.  And not forgetting the severe trembling and pain in the legs, oh and not ignoring the terrible fatigue; hampered by episodes of insomnia.

Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.

So, how do we cope when our conditions are out of control?   How do we deal when we feel at war with your own body?

I have learned that often we need to hold on.  Hold on until it passes.

As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.

I choose to hold on to hope – the hope that it will pass.

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Choose Hope! My lovely badge from the wonderful Itty Bitty Book Company

But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.

To let go of everything that we cannot change.

As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done.  I admit that I find it difficult at times, and find myself getting upset with what I cannot do or find challenging as a result of the neurological condition.  However, I try my best to keep the negative thoughts to a minimum and attempt to see the silver lining in the particular situation (e.g., not being able to get out of bed).  I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.

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There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life.  I do have control, however, on how I choose to deal with the condition.  It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes.  Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.

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So, to help me cope with living with a neurological condition, I both hold on and let go!  I hold onto the positives and let go of everything which I cannot control.  How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?

 

 

 

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Summer’s Here!…And worsening of some symptoms??

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Hello, Everyone!

I hope you are doing well and are AWAP (as well as possible!) and I hope that everyone has been able to enjoy the great weather we’ve had (granted, for those of us in the UK, it’s only been a week or so!). Anyway, although it has been delightful to see bright blue skies and the feeling of warm sunshine on my skin, the hot weather and particularly the humidity at night has been playing havoc with the symptoms which I experience.

For example, Monday I had the opportunity to sit in the beautiful gardens at the Centre for which I volunteer, and after only a short time the dizziness and vertigo which I experience daily were incredibly intense, leading to visual disturbances and incredible nausea as well as deep aches and pains in my legs.

And last night was one of the worst nights I have experienced for a while.

It was so warm and humid in my bedroom, and unfortunately for me, I also had a guest in my room – my dog Honey! And believe me, this didn’t help the situation!

Due to the humidity, it was incredibly difficult for me to get to sleep anyway, especially with the cramping and deep pains in my legs, but somehow I did manage to drop off sometime during the night.

Honey looking angelic keeping cool – complete opposite of her antics last night!

But alas, was awoken around 2.30 by the dog, crying and heavily panting – seems I wasn’t the only one that is having trouble with the heat, and hampered by my bedroom which always seems to get very warm.  And after that was unable to fall back asleep due to the severe stiffness and pain in the legs as well as the violent dizziness and so spent the early hours of keeping myself occupied by listening to music and watching episodes of ‘Grey’s Anatomy’ and ‘Once Upon a Time.’

But a question that might you be thinking is why does the heat affect those with neurological conditions so much?

Well, the reason for this is in many neurological conditions the nerves are damaged or the neural pathways which slows the ability of the nerves to function and send messages to the appropriate part of the body.  Heat can further slow down nerve impulse in affected areas such as legs in my case. And this is the reason for increased symptoms during the hot weather.

 

Image: She Radiance.  A Magazine by Ayushveda 

So to ward off increased symptoms and those of heat intolerance it is vital that those with neurological conditions such as in my case, or those with MS, keep cool during these warm Summer nights.

And what steps can we take to ensure that we do not relapse or our symptoms become worse or find ourselves unable to sleep because of them?

 

Suggestions for keeping cool and being able to sleep comfortably on a hot night: 

  • If safe to do so leave a window open in your bedroom to increase the air circulation in the room.  Multiple windows facing different directions to admit breezes is even better.
  • Set up a fan – if you are worried about the noise emitted by fans, consider buying a large fan or even a ceiling fan which tends to move air with less speed and noise
  • If you are unable to open a window, consider using a fan and ice to mimic air conditioning if it is unavailable.  Buy a commercial bag of ice and empty it into a shallow container (to contain the water as the ice melts).  Place the bowl of ice directly in front of the fan (between the fan and you), level with the top of the bed
  • Keep your neck cool! It works the same way as keeping your feet cool.  Try using a cooling pack that works for you, or place a damp towel on your neck
  • Consider using the ‘Egyptian Method’: wet a sheet or bath towel that is large enough to cover you with cool or cold water, and wring it or run it through the spin cycle on a washing machine until the sheet is quite damp but not dripping wet.  Or you can use a spray bottle of water to spray the top sheet until it is damp but not soaking.  Place the dry towel or sheet underneath your body and use the wet sheet as your blanket.  The wet blanket will help keep you cool.
  • During an extreme heat wave take a light t-shirt and wet it, wring it and then wear it.  Evaporation from the shirt will help to keep you cool enough to sleep for a few hours
  • Take a pair of cotton socks and rinse them in cold water, wring them until they are damp and put them on.  The cooling of the feet lowers the overall temperature of your skin and body
  • Chill your pillowcases: put your sheets, blankets, and pillowcases into freezer bags and place it in the freezer all day.  Doing so can help you fall asleep faster, further reducing your exposure to the uncomfortable heat
  • Sleep in a ‘spread eagle’ position, so heat doesn’t gather around you
The ‘Spread Eagle’ Position
  • If it is a terrible night for you, sleep downstairs – warm air rises, so it tends to be cooler downstairs
  • Take a cold shower or bath before bed, or if this is not an option splash some cool water on your head and feet – this will help you keep cool for longer allowing you to fall asleep faster

 

These are some of the examples of keeping cool during those unbearable hot summer nights.  Have you got any other tips?  Please leave a comment with any other suggestions!

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