Struggling with Storms but hoping for a Rainbow…

Well, today marks the start of a brand new start month.  The start of something new Рwhether 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 is 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).


And this is most important when living with a long-term health condition.  To live with illness everyday is most difficult; and perhaps one of the most difficult aspects of living with a chronic illness, 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 by 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 be cured during the coming year, but 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 experience a decline in the severity of my symptoms.


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 in relation to my chronic 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 has also been very severe, that as 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 obviously one option, however due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even worse.

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 forseeable 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 close circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  This has often only increased the feelings of depression.  Often thoughts of whether I am liked within my circle friends often 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, perhaps even considering the social network Meet Up and 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 still have hope of the appearance of a bright and beautiful rainbow in the hopefully not so distant future…



The sound of illness is often silence…

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.


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…

Escaping the monotony and boredom of chronic illness…


Welcome to the Health Activist Writer‚Äôs Month Challenge brought together by WEGO Health ‚Äď a social network for all health activists. ¬†Again, I am participating in the annual Writer‚Äôs 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…

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

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 ‚Äď 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 ‚Äėspoonies‚Äô everywhere; it‚Äôs 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 ‚Äď 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 ‚Äď 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‚Äôs 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 ‚Äėpin‚Äô those images that you love to pin boards ‚Äď 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 ‚Äď 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 ‚Äď 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 ‚Äď other patients!¬† Certain health communities such as ‚ÄėPatients Like Me‚Äô 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 ‚Äď these tools for everyday life has simply transformed the lives of so many, making life more enjoyable and less isolating!

My Inspiration…

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 Рsearching 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 Рas 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…

WEGO Health Advocating for Another Carnival: Once Upon a Time…

Welcome again to another WEGO Health Advocating for Another Carnival, it’s the fifth day and the prompt is as follows:

It’s storytelling day! Write a story about yourself, your community as though you are a children’s book author. ¬†Be sure to include a beginning, middle, and end. ¬†Extra points for illustrations!¬†

I love this prompt! It’s really different and am sure it is a style of writing us health activists haven’t tried before. ¬†It seems to be a lot harder than it sounds but here it goes…

Once upon a time in a large kingdom called Wales there lived a young princess named Rhiann.  Rhiann was a very lonely princess, nobody understood her as she had an invisible illness meaning she was unwell but nobody could see what was wrong.  This was due to a problem with her brain, a problem no-one else in the kingdom suffered from.

As no other person could see why the princess was so unwell, many of the servants and commoners were suspicious of her assuming that she was inventing the illness to gain attention.  This made the princess so very lonely, and isolated, her only friend being her trusted dog named Honey.

One day, along with Honey, Rhiann went for a walk in the forest where she came upon a little cottage. ¬†The curiosity got the better of the young princess and she stepped inside, “Hello?” she cried out. ¬†Then a mysterious looking witch came into the light “Yes, princess?” she replied. ¬†“Hello, my name’s Rhiann and I just happened to come across the cottage, I’m awfully lonely and was hoping to find a friend.”

The old witch stared at her in wonder, “Yes, my dear Princess, I have heard all about your troubles, and I have something here which will solve all of your problems”. ¬†The old woman gave her a mysterious looking box, which looked very much like a large book. Rhiann opened this book, and instead found a screen with a board with keys, one featuring each letter of the alphabet, as well as numbers and other symbols.

“Thank you so much” the princess cried out, running out of the cottage, Honey behind her, determined to get back to the castle as soon as possible to try out the mysterious object. ¬†As she arrived, Rhiann headed straight to her chambers, settling the mysterious object on her bed. ¬†After studying it for several minutes, the princess found an on button – and she was soon transported to other worlds on the screen. ¬†This thing she was given, according to a note that was attached to this object by the witch, was called a laptop, in which she was able to explore the ‘internet’ – a portal which could take the princess wherever she wanted to go. ¬†The witch also gave instructions on how to use the internet as well as giving her addresses in which she could go on to make friends.

The princess desperately typed and typed these addresses on the laptop and whoosh, she found everything she could wish for.  She found a place were there were a lot of different people with a variety of different medical conditions.  She chatted for hours and hours with these people, talking about a lot of different things.  And she found that these strangers, accepted her for exactly who she was with no judgement.

And as the months and years passed all of these new people became her good friends and the princess was never lonely again.


So, what do you think of my attempts at writing as if I were a children’s book author? ¬†I wrote this as if I were the main character – and the loneliness and isolation ‘the princess’ felt was the same feelings that I have had for many years, the feeling that you are not accepted. ¬†That was until, like the character in my story I became active on the internet, especially within the health community as since then I have had the pleasure of meeting a lot of people who have accepted me for exactly the person I am, and I am blessed to call them my friends. ¬†This is dedicated to all of them.

Unsure of the Path I’m On…

Hey Friends

Me again, for another post to my blog. ¬†Hope all of you are OK. ¬†I have to admit, lately I am struggling – feeling down, alone, sometimes I feel as if I have no friends or no-one that I can turn to – although absolutely no idea as to why I have been feeling like this…

May be down to the deterioration of my condition Рthe dizziness, which has been constant for some time now, seems to have become more intense, as well as the episodes of vertigo becoming much more frequent, and are often times are worse to deal with than the constant dizziness, especially when you take into account the visual disturbances Рvision becoming foggy or blurry and unable to focus on anything, sometimes not even being able to recognise what I am looking at.

As well as that, my legs seem to be gradually becoming worse too – experiencing many ‘drop attacks’ in which my legs suddenly give way from under me, with no warning. ¬†That is the one of the hardest things to deal with also – the unpredictability of it all – going out perhaps, not knowing whether my legs will collapse, and when you take into account that often I find myself often unable to get up after these ‘attacks’ making plans to go anywhere becomes very difficult.

Take one example: on a Monday, I volunteer for a local Mental Health charity, which I have done for a couple of years now. ¬†So, on my way, my Dad takes me to a local supermarket to go and buy some lunch, and last Monday was no exception. ¬†However, whilst ¬†buying my lunch, my legs gave way, and like on several occasions found difficulty in being able to get back on my feet again as my legs were so weak, and felt as if they were trembling a lot, so consequently¬†¬†my Dad had to take me back to the car and buy lunch for me. ¬†Legs never really recovered after that, so felt as if I wasn’t much use at the Centre, but often is nice just to get out of the house for a few hours.

Later on, had another appointment with the doctor. ¬†Basically, told him of all the difficulties I have been having, the seemingly progression and deterioration of the condition, etc. ¬†And once again was told “unfortunately, with conditions like these it isn’t much that we can do, and ¬†no drugs are going to help with the weakness…”, basically another way of saying “There isn’t anything we can do, you just have to live with it.” ¬†Mum even asked whether there was any possibility that I may need to use a wheelchair in the future, and the doctor just nodded his head in agreement, that may be my future… ¬†I was shocked and a little upset, as I honestly never really thought that I may need one, people have said that maybe I should, but never really thought that I may need to actually us one, more so for going out, as still need to use the muscles so they don’t atrophy. ¬†But if I need one, then so be it, as there are worse things in life, hey?

I have been often told that I need to exercise and make use of the muscles as often and as much as I can, however, as I am unable to stand for very long, it makes finding any forms of exercise that I am able to do very difficult, my legs and problems with balance and co-ordination, etc. My exercise bike has been increasingly difficult to use as often feel that I am going to fall off, and the Wii Fit that we have does not often recognise me during some of the games as when you are required to stand still, my body is swaying back and forth…

However, I have recently bought a machine that hopefully may increase the strength in legs (although isn’t ¬†guaranteed that it will work) and also keep me fit and in shape. ¬†It is called an Aeropilates Machine ¬†– ¬†a machine that incorporates pilates exercises with a resistance machine….

AeroPilates 4695 4 Corded Machine and Cardio Board
AeroPilates 4695 4 Corded Machine and Cardio Board

“Pilates was invented by Joseph Pilates in the 1920s as a way of incorporating a full body workout to build muscle and core strength. Over time pilates has come to be the preferred means of exercise for a wide range of people from athletes and dancers to those with common household injuries like injured backs. It‚Äôs benefits are wide-reaching and provide not only fitness and toning, but also help with injuries that you might have. An aero pilates machine apply the basic principles and effectively ‚Äėsuper charge‚Äô your workout so that you reap the rewards of pilates with an aerobic workout that aids with blood flow and muscle growth.”

Anyway, I’ll be off now, doing some exercises on my new AeroPilates machine – fingers crossed that I will see some benefits soon…