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…

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 – 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!

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 – 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…

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.

THE END

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 – the 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 – vision 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’s 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 ‘super charge’ 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…

Fighting the Battle…

Hey Everyone

Haven’t posted in a while, for which I apologise for, but lately am finding things so tough as of late.

The symptoms that I experience with my condition – as I have mentioned before:

  • Dizziness
  • Stiffness and weakness in legs (Spastic Paraparesis)
  • Sporadic episodes of vertigo with visual disturbances such as double vision, tunnel vision

All these seem to worsening… for example, a couple of days this week my legs were so weak that I could barely stand, and as a consequence most of those days were spent in bed watching mind-numbing day-time television, or listening to audio books – I love reading but the visual disturbances were so bad that I really was unable to focus on a book, and after several recommendations from others in a similar position to mind, bought some audiobooks to pass the time when I am having bad times and unable to read.

My legs were trembling so bad, a feeling similar to when your legs feel like jelly when you are nervous, that I just was unable to stand for very long, so really was unable to do much at all and realised how much we all take for granted – going for a showers, making a drink or lunch for ourselves, and so on.  The dizziness was also very intense, as I have mentioned before the dizziness is constantly there, but the intensity of it changes from day-to-day, sometimes moment to moment.  The way it makes me feel is as if I am totally unbalanced, and unable to ground myself, and when standing I can literally feel myself swaying back and forth.  The episodes of vertigo, however differs in that they are episodic, and so come and go (although are becoming much more frequent) and with the vertigo comes the sensation of the world moving, for many it feels as if the room is spinning.  However, I would describe it as everything moving back and forth, and often includes tunnel vision.

As I was so bad my parents pushed me into making another appointment to see our local GP.. after some thought I have made one, although I just get this feeling that I am just wasting the time of the doctor, as it has already  been said that there is nothing that can be done, so it there much point in going?  Should I ask to see the neurological consultant again, even though they are unable to do anything for me?

And on top of all this – it’s also the emotional impact living with a chronic or life-long condition, the feeling of being alone, that no-one else understands what you are going through.  The isolation of being in a room by oneself, no-one to talk to…

Feelings of loneliness and isolation...

Through all of this, not being able to go by myself, in case of a fall or if the visual disturbances come on with no warning, leaving me unable to really focus on where I am (dangerous and could lead to an accident), it has left me very lonely and with no friends, apart from my online support network which is fantastic, but just wish that I could live a normal life, and do things with someone else such as shopping, or going for a cup of coffee, etc.

However this is the card I have been dealt, and maybe there is a reason why ‘this’ did happen to me., and am meant to do something with everything I have dealt with or have learnt from all of this… Now I just need to find the answer and what I am able to do with my life….

The role of support and health communities for people living with chronic and long-term conditions…

Hey Everyone

Sorry, I have not posted for a bit but I have been unwell as my Dad has kindly given me his cold – which has made me feel very unwell and extremely lethargic.

Today, I would like to discuss the role of support groups and other health communities out there for people, like myself who have chronic and long-term health conditions.  These online support groups and communities, for me, has been a god send – as I find myself feeling unwell all of the time, as well as having the dizziness 24/7 and 365 days a year and therefore unable to really leave the house on my own, a lot of my time is spent alone – leading to feelings of loneliness and isolation which can then lead to feelings of depression.

As a result a lot of my time is spent online where I am able to talk to others out there who, although might not have the exact same conditions as me, sometimes have similar symptoms or experiences as me.  Communities or ‘groups’ even exist on social media sites such as Facebook, where in fact I am a member of a several groups, some of which are for people living with chronic and disabling dizziness.  No one, so far whom I have met online, has the exact condition as me, however, this has not meant that I find them any the less useful, or not able to get support out of them – many of the people whom I have met have become great friends of mine, and can still relate to what I am going through in terms of the dizziness as they too are going through something similar.  One of the groups that I am a member of, even have Skype meetings, giving us the chance to actually talk to one another instead of constantly typing answers at each other!!

These sessions, are something which I look forward each month with great enthusiasm – it doesn’t just give me the chance to speak to others about what I am going through with the dizziness, and to gather information and support from these terrific women but also gives me the chance to have a laugh and a giggle with people other than my parents!  Don’t get me wrong, I love my parents dearly and they are a fantastic support, but it does get very isolating just speaking with them day in and day out.

I have also found another very useful too online – an online health community called PatientsLikeMe.  If you would like to know more after reading this then please find the link in the ‘Blogroll’ section.

Information regarding the community - how it works

PatientsLikeMe was founded in 2004, and provides patients with all kinds of conditions and is basically a health sharing website for people with a variety of conditions, hence ‘patients’.  Patients are able to enter data regarding their conditions – such as the condition itself, or even multiple conditions, symptoms associated with said condition or conditions and even the treatments that the patient has taken in the past as well as those treatments that are presently being taken.  In addition, every now and again, members are also asked to complete several questionnaires regarding their mood and quality of life as well as questions regarding symptoms experienced – by answering these simple questions members create helpful charts and timelines to enable users to watch the progression of their condition over time – using the site, members can also add their care team to their profile, to keep their doctors up to date with everything.  There is an even a tool called ‘instantme’ where in 140 characters or less are able to type in on how you feel that particular day – there are 5 options to choose from – ‘very good’, ‘good’, ‘neutral’. ‘bad’, or ‘very bad’ – and then all you have to type in is why you feel that way!  Simple!  Myself, I use the ‘instantme’ tool everyday, as I find it an invaluable tool to track the progression of my conditions and to see if there has been an improvement or deterioration in my symptoms.

Using the site you are also able to find patients just like you – well I haven’t, but that’s another story, but for conditions such as MS or Depression, there are many members with that particular condition, and can even search patients with the same symptoms as yourself, as well as searching for those with the same treatments, and even search for those within the same geographical location – or can even search for those using a combination of criteria.  And furthermore, using the tools such as the symptom or treatments reports you are able to learn and find out and see what others are experiencing – as well as being able to ask questions, share tips that you have picked up along the way and to support others using the forums – which they are many of as well as through a private messaging service.  Basically PatientsLikeMe is a great social media site, like Facebook for those with long-term health conditions!!  If anyone reading this has such a condition, I would more than recommend joining – even though I haven’t found anyone else with the same condition I am still finding it a very useful tool to track the progression of my health – and can even print out ‘doctors reports’ showing the severity of my symptoms and any information that I have entered to show them how I am doing.