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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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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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Keep Calm…and Stay Positive

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As most of you know, that due to the unknown cause of my neurological condition is starting to get me down.  It is frustrating and disheartening when the doctors are unable to give you the answers that you so desperately crave.  It is simple – being undiagnosed is dejecting and can causes psychological symptoms such as depression.  All we crave is a diagnosis – a name for the cause of all that we go through on a daily basis.  A name that confirms that we are not crazy or that the symptoms are all in our head.

Due to the weakness in my legs as well as the severe dizziness and fatigue that I experience due to my undiagnosed condition, I am often unable to get out of my bed and so confined to my bed for days at a time.  Staring at the same four walls of my bedroom; a place where I spend a lot of my time anyway is not a positive experience.  It is often a painful reminder of my predicament; a predicament that I am an undiagnosed chronically ill patient.  Being confined to my bed, leads to feeling of loneliness and isolation – how many times when experiencing severe symptoms have thought you were the only person to be going through this experience?  Is that a yes I hear?  Me too.

However, Voltaire once stated “I have chosen to be happy because it is good for my health”.  A truly inspirational quote, and one that is supported by research – there is a lot of evidence that suggests that being positive makes you feel less stressed; has a positive influence on your immune system and has a huge influence on your overall well-being.

But how can we still remain positive when living with a chronic illness, which has such a negative influence on all areas of our lives?

Well, for me I have started to assemble a ‘positivity board’.  A board with cards, postcards, or letters that are both positive and in turn makes me feel more positive and happy despite being bed-bound or dealing with unpleasant.

The board is no way finished but at the moment includes a couple of cards that I found in a local art gallery that includes positive quotes, for example “Life is not measured by the number of breaths we take; but the number of moments that take our breath away” and my personal favourite “Life is not about waiting for the storm to pass but learning to dance in the rain.”  Also, on my board is a gorgeous card that was sent to me by a dear friend which has some really lovely words both outside and inside the card which I shall treasure and which brightened my day when I received it – a time when I really needed it.

I also found a couple of butterfly clips which I found in a local shop which I bought just to brighten the board and because of my love of butterflies.

Try making a board for yourself and fill it with all the things that make you happy or makes you feel a little more positive despite whatever circumstances that you often find it hard to cope with, or one which has a negative impact on your life.

Stay Calm…and make a positivity board!

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If you come across any cards that has any positive quotes or perhaps with a lovely picture of a butterfly or sunflower or anything else positive, let me know in the comments section and help fill my positivity board!

 

Thanks everyone! xx

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In Chronic Illness

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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My Inspiration…

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Over at WEGO Health this month is ‘Health Activist Inspiration Month’.  The purpose of this month is to celebrate what drives health activists to empower themselves and others as well as the inspiration behind what makes them carry on the important work.  As part of the celebrations, I have decided to share the inspiration behind the blog and what inspires me personally.

My inspiration comes from the loneliness and isolation that I felt after my diagnosis of a long-standing brain stem lesion and spastic paraparesis.  Like most other people, I turned to the internet – searching various search engines for any information about the condition, and organisations or blogs where I could connect with others exhibiting the same condition.  Imagine my disappointment when I found that there was no such information or support networks out there, adding to the loneliness and isolation I already felt after a long battle with trying to get diagnosed, as well as how different I felt from others my age due to the symptoms I was experiencing.

After inspiration from a close friend and fellow blogger, I decided to start my own blog and so it was born in January 2012 so that no one else who may in the future be diagnosed with the same condition will go through what I did – feeling as if they were the only one going through this and that no one else understands what it is like!!

I have now begun supporting the ‘Invisible Illness Awareness Week Project’ and the inspiration behind supporting the cause as my neurological condition qualifies as an invisible illness – by looking at me you would never though that there was anything wrong.  But that isn’t the case as my days are filled with constant dizziness, frequent attacks of vertigo and visual disturbances, as well as the stiffness and weakness in the lower extremities.  Many people underestimate the effects of invisible illness or dismiss them entirely, claiming that the person is lazy or “that it’s all in their head” and so on.

It is due to these common misconceptions that inspired me to write about my life and journey with this condition – as many doctors for years blamed my symptoms on anxiety.  In want to be able to express the truth about invisible illnesses as well as dispelling those myths that many people hold.

And now I find that although non-one else I have ‘met’ has the same condition or disability that I have, nevertheless I have come across many other patients and bloggers out there that I have been able to connect with and gain understanding and friendship.  And the inspiration that keeps me going?  Receiving messages of support during a bad day can mean the world…

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