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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.

[Tweet “We often need to accept the reality of our chronic illness and let go of things we cannot control.”]

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.

[Tweet “There are aspects of chronic illness that we cannot control, but we can control how we deal with it.”]

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?

 

 

 

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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