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Chronic Illness

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Ice crystals Hey Everyone I hope that everyone is well and so far is experiencing a great 2013!  For those living in the UK, as I am you may be aware that the country has been affected by snow and icy conditions; schools have closed here in Wales because of widespread icy conditions therefore making driving hazardous. I know for many, snow brings joy and happiness – the picturesque scenes that it creates as well enjoying snowball fights and so on.  However, for many people; those in similar circumstances such as myself, it can create anxiety, even leaving some housebound during these weather conditions.  For example, this morning I had an appointment at the dentist; however, I was unable to attend because where I live was extremely icy because of the ice that developed overnight.  Myself, as well as my parents were concerned due to my impaired mobility and balance problems that I was at a high risk of a fall…I am very fortunate that despite the numerous and often severe falls that I have experienced, I have not broken any bones, so we did not want to risk anything that may potentially break this record!! The Winter can be a difficult time for anyone with a neurological condition like mine; especially as the very cold weather can make the spasticity in my legs worse than usual.  As well, as heightening the nerve pain. So, what are some of the ways in which those like me with neurological conditions can cope with the icy and winter conditions?  Here are some tips that I have found from magazines and the internet:

  • Keep warm!  Extra layers such as thermal underwear can keep the heat in, and stop symptoms such as nerve pain from getting worse because of the very cold weather.  And don’t forget to keep hands and feet warm with thick socks and gloves as well as a warm winter coat, hat and a scarf when out and about. 
  • If the nerve pain is confined to a particular region in your body, then make sure that region is well protected from the cold as the cold can heighten the amount of pain experienced
  • Hot water bottles and heat pads can be extremely useful for extra warmth – or perhaps, use an extra thick blanket, or invest in a ‘slanket’ which is a blanket with sleeves and even some has a pocket for your feet!  Great for keeping warm when watching TV on those very cold nights!
  • Keep your home warm – the ideal temperature for your home during the winter month is between 18ºC and 21ºC.  And the bedroom at night should be kept above 18ºC
  • Stay active as it increases the circulation and generate heat
  • If nerve pain is much worse during the winter months than perhaps it would be a good idea to speak to your doctor for extra medication to help during these months
  • If it isn’t necessary than it may be an idea to stay indoors especially if you experience problems with balance in order to prevent falls
  • If you do have to go out for any reason than make sure you wear appropriate footwear; for example flat footwear with rubber soles provides better traction on the snow and ice than leather soled footwear or high-heeled shoes
  • Where possible make sure that you use handrails
  • Take small steps in order to keep your centre of balance and walk slowly
  • Avoid carrying heavy shopping bags, especially on steps

For more information:

How do you cope during the Winter months; and particularly when there is snow and icy conditions?  Are there any other advice you can give to cope during these hazardous weather conditions?

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The above appeared on my Facebook timeline the other day, which in turn got me thinking about when I am asked how I am feeling by others during my everyday life.

The question “How are you?”, is one in which is particularly hard for us who are chronically unwell.  How on earth do we answer in a few short words?  How can we answer, when we ourselves are often confused over our own feelings.

And then there’s the whole range of symptoms that we have to live with on a daily basis – tiredness, aches and pains, headaches, nausea, dizziness and the list goes on and on….

Plus, many of the symptoms, that I and other spoonies out there, the severity of the symptoms often varies from day-to-day; often changing moment to moment, and so describing exactly how we are feeling may take  some explaining!  And many people, are then afraid of the awkward silences that may follow the answer, when we decide to divulge the truth of how we are; friends not knowing what to say or how to respond to the realities of being chronically unwell.  Then there are other people, who like to offer their advice; often advice which is well-meaning and is offered with the best intentions, but only come off as being condescending and patronising, such as “You need to get out more, it’s probably just stress, and staying in, probably isn’t helping your condition”, there are many more examples – too many to mention here!

Perhaps we should come up with a new greeting for those living with a chronic illness, perhaps something like “You look well, I hope you are as well as to be expected…”

Any thoughts….

 

New year 2013

Hello to you all, I hope your Christmas and New Year went well, and you all managed to enjoy yourselves.  Now 2013 is upon us, I thought it would be a good idea to take a look at last year…

Well, firstly 2012 saw the deterioration in my condition and the symptoms which affect me: the dizziness became much more intense as well as becoming constant.  As well as this, the weakness in my legs became worse, and thus saw me needing to start using a wheelchair, as the weakness left me with an inability to stand for shorter periods of time.

However, although last year, saw a deterioration in my symptoms there was still a lot to be thankful, including the following:

  • The creation of the blog; gaining a lot of new friends and contacts within the world of chronic illness 
  • Taking part in the wonderful 12-12-12 Project hosted by the wonderful Marissa over at abledis.com 
  • Having two articles published online; one for ‘Invisible Illness Week

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  • Joining the wonderful group ‘Life 4 Living’ in which I became the group’s secretary; giving me a sense of pride and purpose 
  • Can’t forget the two nominations I received for the blog as part of the WEGO Health Activist Awards!!  Thank you for whomever nominated me and the blog
  • Receiving help from Social Services to help me manage the condition, as well as being able to employ a personal assistant to help me get out of the house more!

I just wanted the opportunity to show people that although many of us, battle everyday with chronic illness, it does not mean that our lives need to be full of negativity and despair, but instead there are many positives that can be as a result of said illness.  I recently bought myself a gorgeous print from a local artist, which sums this up beautifully:

 

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The quote says: “Just when the caterpillar thought the world was over…it became a butterfly”

Happy New Year!!

I hope that the recent holidays was a happy and joyful time for you and all of your loved ones.  And that despite any health problems that you (or loved ones) experiences you were able to take part in all of the festivities and managed to enjoy yourself.  I spent the New Year, seeing it in by  myself as my parents were both working the next day, not the most fun, but I love to stay up and seeing the New Year in, wondering about the all the possibilities that the New Year has to offer, hoping it will be better than the last.  Also, hoping that it will be a healthier year for me and all of my loved ones.

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Anyway…

A few weeks ago, I was invited to an event on ‘Facebook’ to an exciting writing project by a friend which was set up by an organisation called the ‘Chronically Awesome Foundation’.  The project asks us to write a blog post on the following topic:

“What does being chronically awesome mean to you?”

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For me ‘chronically awesome’ is a phrase of celebration – not a celebration, of whatever may be wrong with us, but a celebration of who we are DESPITE our diagnosis.

There are a lot of patients out there who blog, writing about their particular health condition.  This may be for a variety of reasons; to have an outlet to vent for all of the things which make it difficult with living with a chronic illness, or it may be that they wish to make others more aware about the condition in which they live.  In any instances, it may be often difficult to separate the person from their condition.  However, as the term ‘chronically awesome’ may suggest that we are all more than our diagnosis – it is something that we live with instead of the condition being a part of us; ingrained within our personal identity.

But of course, everyone battling with a chronic illness is so much more than their illness – have great passions, talents that may not be known to others, are funny and brave and so on. And it is all these traits which make those with chronic health conditions “chronically awesome!”

And it’s all about remembering this when going through all the bad days which chronic illness often brings – and doing what you can with everything you have.  To not to dwell on all the negatives, but instead remember all the positives in life; those which cannot be tarnished by illness – and most of all to smile and bring positivity!  Think of chronic illness as a long drawn out war, there are times when chronic illness and all with what they bring in terms of symptoms may win certain battles (such as stopping us from doing things which we may want to on a given day) but by having a positive attitude, chronic illness will not win the overall war.

“Chronically awesome” is also all about doing all those little things which bring us joy or those activities which we miss doing due to ill-health, and those times when we are able to complete these activities which are often out of the question as we feel so bad, again makes us “chronically awesome.”  It’s all about living life to the fullest despite chronic illness – instead of simply existing with a chronic illness.

And this state of being ‘chronically awesome’ is not just meant for the individual but to me, is a collective effort from everyone suffering with a chronic illness.  We live through it all together – through it all; the insomnia, the pain, the dizziness and all of those appointments at the doctors’ office or hospital.  We complain and vent without the comparisons, and the “Whose illness is worse?” game.  We support one another during the bad times, and celebrate the triumphs when they occur.  So many times I have pondered many questions regarding my condition or about the symptoms I experience; and by the power of social media, there have been many people who have reached out and offered me advice, solutions or just their unwavering support.   The people whom I have met online I know are always there for me, and will often describe them as ‘my online family’.  We all understand one another, and are sometimes are the only people who truly understand exactly what it is like for me.  Everyone of my chronically ill are themselves ‘chronically awesome’!

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What does the term ‘chronically awesome’ mean to you?  Share your thoughts and perhaps links to what you have written for the writing challenge (if you have participated).

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