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When living with a chronic illness, any chronic illness there are of course many symptoms that we are forced to live with as a consequence.  Both physical and psychological effects of living with a long-term health condition such as the neurological condition that I live with everyday.  Perhaps one of the most significant and common psychological repercussions of living with a chronic illness, which is not always discussed is loneliness.

Loneliness is often discussed in relation to the elderly.  It is often seen as a consequence of getting older.  However, loneliness is a feeling that can strike at any age and whatever the personal circumstances of the individual concerned.  In my personal experience, through personal experience and with engaging with those within the chronic illness and the ‘spoonie’ community, loneliness can also be very much evident when living with chronic illness.  Not only is loneliness is felt in terms of living with a chronic illness itself, in the feeling that no else understands what it is like with living with such an illness. However, loneliness can also manifest itself in the physical sense – the lack of company.  One often consequence of being diagnosed with a chronic illness, is that friends can disappear from our lives.  Many cannot handle seeing a friend being in pain, or cannot understand when plans are often cancelled due to the onset of debilitating symptoms.  Living with chronic illness can often result in many hours spent alone in our homes.  Hours spent lying in bed or on a comfortable sofa.  Hours spent binge-watching boxsets, often because a lack of other options and to fill the deafening silence that surrounds us.

Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness
Holidays are a time where loneliness and isolation feels more evident when living with chronic illness

Being alone is something that I routinely have to deal with as my parents are often working and have few friends living nearby that have the time to visit and keep me company on those days in which my symptoms are particularly bad.  It was on New Year’s Eve and New Year’s Day this year however, the feeling of loneliness and isolation was particularly evident.  Like previous years, I celebrated the start of New Year alone, whilst my parents were sleeping upstairs (both were unfortunately started work early the next day) and as I had no contact with anybody and no-one had bothered to phone or text me to wish me a Happy New Year the feelings of loneliness were exacerbated. I felt jealous whilst watching the live New Year celebrations on television and seeing those people who were friends and family for the night meant for celebration, whilst I was sat on my own.  The first day of a brand new year also started on my own in an empty house with only a dog whose only interest was sleeping.  As cards drove onto our street and emptied with the arrival of visitors to other houses in my street, I  felt even more alone and felt incredibly low.

It’s frustrating living with a neurological condition like mine.  Due to the symptoms which are particularly debilitating such as the dizziness and weakness in the legs (which are unpredictable and it’s not known when they may give way), I am not able to get out of the house alone.  Therefore, as a result it makes it even more difficult to be able to go out and make new friends.  It’s as if my neurological condition has torn down bridges between myself and the life that I want to lead, and instead has built a wall around me, trapping and confining me.

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It is of course, easy to make online friends or even penpals which I have been trying as a way to quench my thirst for human interaction and companionship.  These are great substitutes and an easy way to make new friends, but I still crave face-to-face interaction with someone around my own age over a cup of hot chocolate.  Isn’t that we all want in life?  Plenty of friends that we can count on during the good and bad times in our lives?  How to achieve that when living with an illness that prevents you from leaving the house unaided is still a huge question that remains.

Although that I hope to gain new friends during the coming year, and hoping that I will have people to celebrate the start of 2016 with…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The prompt reads as given:

“These are a few of my favourite things”…It may not be brown paper packages wrapped up in string or warm woollen mittens, but what are some of the things you love?  What couldn’t you live without?

I have a lot of things in my life which I love – my friends, family and my pet dog Honey are at the top of that list but as I have written about them numerous times already, I have decided to concentrate on the things that I love which provide me with comfort on the bad days and helps me to stay positive.

So what is in my own personal ‘Comfort Box‘?

First of all is a pair of comfortable pyjamas.  I have a pair in which the bottoms are chequered and a simple pain black top.  It is great to have a comfortable pair of clothing to keep near the bed, as whenever I am stuck in bed due to my condition I still am able to change into something clean as an alternative to staying in the pair of pyjamas that you have had on all night!  It is also convenient for those days in which you have no energy to be able to pick out an outfit and are planning to stay at home anyway.  The pyjamas that I have kept for those many bad days, look more like lounge wear than conventional pyjamas so is less embarrassing if the postman knocks on the door to sign for a parcel!

Another favourite of mine to keep next to my bed is definitely my iPad.  When stuck in bed, it can be extremely monotonous and dull.  Therefore, I love my iPad as it keeps me entertained with a variety of different apps to use to suit my mood.  For instance, there is the Kindle app for when I fancy to lose myself in a book, or even Netflix when spoons are nonexistent that all I have the energy for is to watch a television programme or film that requires little thought involved to enjoy, or sometimes watching videos of cute and adorable dogs on YouTube to cheer myself up when stormy clouds appear, blocking all sunshine and positivity in my life.  I am even able to stream the many number of films and television programmes that I own from iTunes which can keep me entertained for hours.  Then there a number of games that I have downloaded to the tablet computer; a great distraction from pain and dizziness that seems to plague my life so much.  In my opinion, tablet computers are a must-have gadget for spoonies – it is easy and light to carry and can easily be used in bed, and the features that are available on tablets such as the iPad mean that you never have to be bored whilst stuck in bed again!

One thing I have learnt about living with a chronic illness is how important it is to have a relaxing place to recuperate.  These not only brighten my bedroom but also puts a smile on my face
One thing I have learnt about living with a chronic illness is how important it is to have a relaxing place to recuperate. These not only brighten my bedroom but also puts a smile on my face

Above my bed, I have just placed some butterfly LED lights, which is now another one of my favourite things.  As many of you know, I love butterflies and have many accessories and pieces of clothing which has butterflies all over them.  When I saw these in a local shop, I thought they would make a lovely addition to my butterfly themed sanctuary.  Not only do they brighten my room and provide light, for when I am awake with painsomnia (for explanation of term see my series of the ‘A to Z of Chronic Illness‘) but they just put a smile on my face when recuperating in my quiet, relaxing space at home.

Some of my favourite letters and cards :)
Some of my favourite letters and cards 🙂

I treasure all of the cards and mail that I have received from numerous friends.  Their beautiful words and lovely sentiments never fail to bring a smile to my face and cheer me up when feeling low.  These are perfect to read again and again, especially when suffering a relapse or flare in your condition.  Letters from friends, or relatives remind you that you are not alone and that there are people who care when it can often feel that you are alone.  One of my favourite letters is one I received from the extraordinary  young woman ,Jodi Ann Bickley, who after suffering from ill-health herself established ‘One Million Lovely Letters‘; a project in which she writes letters to those who need a lift, whether it be because of illness, a breakup or bereavement.  The letter is gorgeous; with beautiful meaningful words and complete with glitter and sparkle.  The letter means so much as it is a reminder that I am so much more than my condition, and how I am not alone in the fight against my condition.  It is a perfect antidote to a bad day due to my neurological condition.

Some goodies from 'The Itty Bitty Book Company'
Some goodies from ‘The Itty Bitty Book Company’

Another item that brings me comfort is the little items that I have bought from the wonderfully positive company ‘The Itty Bitty Book Company‘.  This small and ethical company promotes positivity through using inspirational and motivational quotes in little books, prints, cards and even badges.  The quotes are all ones which I love and find helpful during times of struggle; I often take them to hospital appointments to help give me strength and positivity.  The designs are also truly beautiful and the bright colours makes me instantly smile.

Positivity Board -full of hope and inspiration
Positivity Board –  full of hope and inspiration

Another favourite thing of mine, is actually something that I created and that is my positivity board.  It has everything that inspires me and keeps me positive despite chronic illness – letters from friends as well as cards that I have bought with inspirational and positive quotes on such as “Life isn’t about waiting for storm to pass but learning to dance in the rain” and “Everyone wants happiness, nobody wants pain, but if you want a rainbow you need a little rain”.  It is these quotes and the idea of the positivity board which really helps in keeping me inspired and positive despite all the trials and tribulations that comes with the symptoms associated with my neurological condition.  Recently, I have found some ceramic shapes that also has lovely and positive quotes on them and as I have not go much space in my bedroom to hang them, I have therefore decided to place them in my comfort box and get them out when I am having a rough day because of how I am feeling or stuck in bed due to the weakness in legs.  These items are a great reminder that no matter how life may be tough in the present, there are still many more good moments to come; they inspire and uplift me when life with chronic illness becomes too hard to bear.  They help me remain a positive person and that are why they are part of my favourite things and carefully placed in my comfort box.

Some inspirational quotes
Some inspirational quotes

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Welcome to the penultimate 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 read:

Toot that Horn!  Want to hear a secret?  You’re awesome!  (It’s actually not even really a secret).  This is going to be hard for you, O Modest One, but you gotta give yourself props today!  Wrote three things you love about yourself – things you’re great at – or just want to share.  Don’t you dare signpost or undercut those self-compliments!

Apparently I'm awesome?
Apparently I’m awesome?

I will admit, I have struggled so much with this prompt.  I am not one for, tooting my horn so to speak, and struggle with making lists of what I love about myself; or about what I am good at.  I even tweeted about this, as I was so stuck:

A great friend of mine, Anya replied to this:

The next day, whilst checking my email, I came across an email from Anya, who came up with a list of things that make me awesome.  In the email, she writes:

  1. You always support and think of others even during your own tough days
  2. You always tweet kind things
  3. You always rise even after falling
  4. And you rise consistently well!
  5. You are dancing beautifully despite the relentless rain and storm

 

 

What do I think makes me awesome, the question asks?  Here are some that I finally managed to come up with!

  1. I think that I am considerate towards others; for example, even when I am not feeling well, or even when my legs are weak I will still complete chores around the house to lessen the amount that my Mum has to do around the house.  I regularly do the washing-up, when my health allows, even when the trembling is bad so my Mum, who has worked all day, doesn’t have to do it.
  2. Keeping up with the blog and other social media is pretty awesome!  And on top of that I am involved with several project such as Life 4 Living, Neuro Nula and Unseen Magazine.  I like to keep busy, and advocate of==for other people with chronic health conditions as well as raising awareness for neurological conditions.  You could say that I am helpful?
  3. I still remain positive despite living with a chronic illness, which is pretty awesome as all of you will know living with any illness is hard and difficult, especially during the tough times.  I have even designed my own ‘Positivity Board’ with little notes and positive sayings to look at when I am in bed due to illness, and to generally cheer me up when times get tough.
My Awesome 'Positivity Board'
My Awesome ‘Positivity Board’

Those are the things that are awesome about me – through my own eyes and those of a close friend!  Are there other things that we have missed, that make me awesome?  If you have any then please comment below, and make my day as well as giving me something lovely to read and remind myself when I am struggling or just generally having a bad day…

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