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Being A Prisoner To Chronic Illness
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Being a Prisoner to Chronic Illness

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Being A Prisoner to Illness

Loneliness. Isolation. Solitude.  Three words that I would describe life with a neurological disorder. Excluding words, of course, associated with the symptoms that accompany said condition. You become a prisoner to chronic illness; a prisoner in your own body.

Not fitting in

"Loneliness. Isolation. Solitude.  Three words that I would describe life with chronic illness." Share on X

Having experienced symptoms from a young age, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others think of me as odd and different. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years.

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Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends, but just like the seasons, they have come and gone. So-called friends bullied or ostracised me. They were unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.

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The Limiting of Symptoms

It’s difficult living with a neurological condition that affects your perception of the world. Some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.

It seems that if you decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go on trips to the cinema or go shopping with friends, but symptoms of our health condition, unfortunately, limit us.

Feeling pushed out and neglected because of symptoms of chronic illness

We want to feel included, invited to events even if we aren’t always able to attend. Our anthem song has slowly become ‘All By Myself,’ and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.

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I feel limited by my condition. The dizziness is so disabling that it leaves me disorientated and confused. Trembling in the legs so severe that I have no idea when they are going to give away and unable to go out without somebody with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.

Prisoner to Chronic Illness

Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.

"Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life." Share on X

During our first cruise, due to the severity of symptoms, much of the holiday was spent inside the cabin. Unable to even get out once off the ship to enjoy the surroundings that the beautiful countries had to offer.

And as much as I wanted to persist and visit the places our holiday had to offer.  As much as I would like to get out of my ‘prison’ and participate fully in life, it is incredibly difficult.  It feels as though I am being held hostage by the myriad of symptoms that accompany chronic illness.

At other times, it is not being held hostage by symptoms that keep me prisoner but rather the lack of opportunity.

Others may assume that I am forced to decline invitations due to ill health, or otherwise forgotten. But whatever the reason I’m once again excluded, ostracised. Even in the darkest times, experiencing the extreme depths of loneliness and isolation, I crave the company of others. The companionship of others who I don’t live with and already regularly see!

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Finding Companionship Amongst Solitude

Amidst the constant solitude, we are forced to find companionship amongst books. Whenever I reread ‘Little Women,’ it is like saying hello again to an old friend. Failing that, on some of our worst days, then it is our favourite TV shows that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.

You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded. Little by little, it chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations. After being stuck inside the house for so long, it seems that we have forgotten how to converse.

"Netflix is a welcome distraction from the silence and solitude that surround us." Share on X
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The vast community that exists of fellow warriors, helps with the isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through can bring welcome light into the darkness. At last making, you feel less alone in the world.

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It is these relationships which help loosen the shackles. And which can help release you from the prison that living with a chronic illness has built.

"Social media helps with the loneliness and isolation that chronic illness can bring." Share on X

Who else can relate? What do you do to get out of your personal ‘prison’?

I am so sorry if you can relate, and that loneliness and isolation is a regular part of your life. But remember that you are not alone. Feel free to comment below, or connect with me on social media (links at the top of the page).

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Struggling with Storms but hoping for a Rainbow…

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Well, today marks the start of a brand new start month.

The start of something new – whether it be a new day, month or year.

It is like a fresh, white piece of paper, in which the past and everything that has come before forgotten, and instead, we are allowed to start afresh.

To start our story anew.

It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).

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And this is most important when living with a long-term health condition.  To live with illness every day is most difficult, and perhaps one of the most challenging aspects of living with a chronic an excellent is the unpredictability of it and the unknown of what each new day will bring.

Even with every little sign of illness such as a headache, for example, brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since my last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope,’ I, however, have been living with the storm clouds above my head.

Just before the beginning of 2015, I had the hope that this will be a really good year.  Don’t get me wrong; I do not have the irrational belief that I would miraculously improve during the coming year.  As I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would not experience another decline in the severity of my symptoms.

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It would seem that this particular thread of hope has unravelled.

In fact, these past few weeks has been the hardest weeks that I have experienced concerning my illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.

The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs have also been very relentless; my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is one option, however, due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even more nauseous.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the foreseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle, these feelings have unfortunately only increased.

Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my tight circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  It has often only increased the feelings of depression.  Often thoughts of whether I’m liked within my circle friends usually follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, maybe even considering the social network Meet Up.

Or setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds but still, have hope for the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

RainbowShower

 

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The sound of illness is often silence…

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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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Escaping the monotony and boredom of chronic illness…

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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.

Today’s prompt reads as follows:

Health Activist Choice Day 2!…Write about whatever you like

This past weekend saw the annual celebration of Easter.  And it was also a long Bank Holiday Weekend.  A lot of people revel in these long Bank Holiday weekends – it often means a long weekend off from work, and time spent with family.  Many people even go away on these Bank Holiday weekends, perhaps visiting family or going on day trips with family and friends such as the beach if the weather permits.  However, both my parents usually work on Bank Holidays, and therefore, this Bank Holiday I will once again be home alone.  Friends and other members of the family all have their own lives and plans for such weekend and so don’t like to impose; or often I am in too much pain, or the weakness and trembling in the legs is so bad that I am unable to go out anyway.

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

It can be so difficult when living with a chronic illness feeling isolated from the world.  In addition, it hurts when you see or hear other people’s plans or stories for Bank Holiday weekends and you are once again stuck inside the house because of chronic illness.  It is not only miserable to be stuck inside during the Spring and Summer Bank Holidays when the weather is beautiful and warm, but it is also incredibly miserable as there is never anything on television.  The usual choices on television are films which you have already seen several times, repeats of old episodes of various television programmes and trashy reality shows.

It is on days like these that the blues can set in especially if symptoms are severe and persistent.  So, the only thing to do is to make your own fun!  But what some ideas of what you can do on such days when symptoms are bad and you need to make your own fun because of one reason or another?  Here are some ideas that you can do on such days when energy levels are low but you also want some fun:

  • Movie Marathon: Think of your favourite actor or actress.  Who is it?  Sandra Bullock?  Tom Cruise?  Julia Roberts?  Whoever it may be, consider having a movie marathon of all the films that they have starred in!  Perhaps you haven’t got a favourite actor or actress; in this case you can watch films from your favourite movie genre.  For example, I love romantic comedies – they are fun, girlie and more often than not have a sweet, happy ending.  Perfect on days when you may be feeling blue.  So, get the DVD player ready, grab the popcorn and settle down on the sofa for some feel-good  entertainment
  • Pamper Yourself and give yourself some Love!: In my opinion, there is no better tonic when feeling low then to give yourself some well-deserved pampering!  Especially when it has been a tough time dealing with chronic illness, and you have begun feeling blue.  Have a lovely warm bubble bath using your favourite bath scent – for relaxing try lavender for example.  Or paint your nails a wild and bright colour.  I usually paint my nails a bright and colourful colour whenever I am feeling low; for some reason it cheers me up and puts a smile on my face no matter how bad I am feeling.  I have had several bad falls recently so I also like to give my poor, bruised legs a pampering my applying soft and comforting body lotion.  If you have some friends around for a night-in, you can even give yourselves facial masks whilst watching some films together – double the feel-good fun!
  • Take a Virtual Tour of a Museum: I know a lot of people love to visit a museum on Bank Holidays with their family or friends.  I love history myself and I love visiting museums to learn of a different period of history.  However, as energy is very often low due to chronic illness then walking around a crowded museum may be too much to handle.  The solution?  Take a virtual tour of a museum that you may have never been before.  There are plenty of choices around; for example the British Museum offers a range of different virtual tours on a variety of different topics in history.  Or if you are more interested in art then the Louvre has virtual tours on their website.  Try searching ‘virtual tours’ and see what is available and find a virtual tour which suits your interests.
  • Get Creative!: In my experience of making cards, being creative whether it be making decopauge cards like myself, or painting, drawing or writing can be extremely cathartic and can also be good at distracting yourself from pain, boredom or feelings of depression that can often accompany being alone or unwell. So, whether you are an artist or a writer, try getting creative the next time you are bored, or suffering from severe symptoms.  It’s cheap, and something you can even do from your bed if needed.
  • Enjoy your garden: When you are unable to get out of the house and enjoy a Bank Holiday at the seaside, for example, it does not mean you have to stay indoors feeling miserable.  Try sitting out in your garden, enjoying the sunshine whilst reading a book or listening to your favourite music on an MP3 player.  If stuck in bed, however, there are meditation exercises that involves you imagining that you are in a beautiful garden, beach or in your favourite place.  Meditation or relaxation exercises are an effective tool against chronic pain, depression and anxiety.  In my opinion, practicing such techniques are well-worth the time when living with chronic health problems.
  • Learn something new: This was suggested by someone I know via social media.  I had no idea that the internet allows you the opportunity to enrol in free online courses! I think this is such a brilliant thing for anyone struggling with chronic illness or disability; as often because of our conditions we are unable to get out of the house.  Many individuals with chronic health problems also do not work and as a result do not have the funds to access courses that charge and are often very expensive, however, there are a number of websites online that allow you to enrol on courses which are completely free!  So, if as a result of your chronic illness you are stuck in the house a lot of the time on your own and find that you become bored, then this is a perfect opportunity to learn something you have always wanted to take up but have been unable to because of the lack of money or because you are unable to leave the house due to illness. It may also be a great opportunity to distract yourself from pain, fatigue and other symptoms that affect your life.
  • Read a book: This is usually the first activity that I go to when alone, bored and feeling unwell.  Its cheap and does not require a lot of energy and thanks to my Kindle I have a number of books I have access too within easy reach.  In my experience, when you are engrossed in a book that interests you, then time quickly passes.

So those are some of my tips to pass the time; distract yourself from boredom, pain and other severe symptoms.  What other things that you can come up with to entertain yourself when alone in the house or just when you are too unwell to go out?  As ever I would love to hear your suggestions and thoughts so please feel free to add any comments below…

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NHBPM Day One: Why I Love the World Wide Web!

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Think back fifteen years, its 1997 and the internet was still in its early infancy and was just starting to take off.  Being chronically ill or housebound must have been really lonely and isolating – being stuck indoors with only daytime television for company…

Fifteen years on however, the internet is just another part of our everyday life, a lifeline for ‘spoonies’ everywhere; it’s a connection to the outside world, a place where we can meet and talk to others.  The internet is an invention that has meant that the chronically ill and housebound need no more have those feelings of loneliness and isolation.

We need no more rely on others to go shopping for us – it can all be done with a few clicks of the mouse, which can then be delivered to our front door.  Even those who are chronically ill and are able to go out but are easily fatigued can access online shopping and save their spoons for other chores that need to be done.

Another advantage is the explosion of social media – sites such as Facebook, Twitter, Pinterest and others are a fantastic opportunity to connect with others, or stay in contact with friends and family if you do not get the chance to see them regularly.  It’s a lifeline for those nights plagued with insomnia, unable to sleep, and unlikely to be able to due to the severity of the symptoms, before it would mean sitting alone with a mug of hot chocolate in front of the television, but since the invention of social media you can always find someone online to talk and vent your frustration with.  It has become so easy to find new friends with sites such as Facebook, and since starting this blog and taking advantage of social media; I have met and made contact with a lot of fantastic and beautiful people, each battling with different illnesses but meanwhile writing and spreading awareness for their particular cause.   I have also come to love sites such as Pinterest, which allows the opportunity to ‘pin’ those images that you love to pin boards – I often use this tool for saving certain crafts that I love the look of and would love the opportunity to try them for myself – also giving me something to keep myself occupied during those times when I am alone in the house and looking for something to do

And online health communities are definitely an advantage for those of us battling chronic illness – it provides somewhere to connect with others with the same condition, or perhaps neurological conditions in general, as an example.  Connecting with others on particular online health communities can also mean for the newly diagnosed they can find information and tips for living well with the illness from experts – other patients!  Certain health communities such as ‘Patients Like Me’ even offer the option to track your particular health condition by filling out questionnaires on how you are feeling and by detailing the severity of the symptoms being experienced.  This obviously offers many advantages, one of which is being able to easily spot any deterioration in symptoms experienced, and noting any progression in the condition, especially if it is one that is degenerative.

There are so many wonderful reasons why I love the internet, social media and online health communities – these tools for everyday life has simply transformed the lives of so many, making life more enjoyable and less isolating!

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