HAWMC Day 30: Through Illness You Find Out Who Your True Friends Are…

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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 given prompts.

Thursday 30th April: I wish I would have known… 

There’s a reason why we have the saying, “Hindsight is 20/20”.  What do you wish you had known at the beginning of your patient journey that would have made it easier and less scary?

Those of you that have been following my blog posts for #HAWMC (Health Activists’ Writing Month Challenge) will know the struggles I faced during my life prior to chronic illness (well, in my case it was not really prior illness just that I was unaware of the condition) with the name-calling and isolation that I experienced at school.  The excruciating loneliness and struggling with feeling so different from my peers.

After being diagnosed with the neurological condition, however, did nothing to help those feeling of loneliness and isolation.  In some ways, these feelings seemed to multiply.  And as the condition deteriorated and facing difficulties with mobility and going out, the friends I had made since school seemed to vanish and was once again facing hours of being alone, stuck inside the same four walls.  The isolation and loneliness were deafening, and all I wanted was strong and unwavering friendships to silence them.

Facing an uncertain future, with a permanent neurological condition and a life-time of symptoms as a result, felt incredibly lonely in itself, but was further exacerbated by a lack of support system outside of my family.

Therefore, the one wish that I would have known at the beginning of my patient journey is the wonderful support system and the chronic illness community that exists online and the presence of the many wonderful people who blog and help raise awareness of chronic conditions on social media.

I wish I had known about the ‘Spoon Theory‘ a wonderful theory coined by fellow Health Activist Christine Miserandino; a thread which unites everyone living with a chronic illness regardless of the diagnosis, and whether it be a physical or mental condition.  It’s a theory which encompasses everyone with a chronic illness, and has grown into a large and beautiful community.

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Proud to be part of the ‘spoonie’ community!

 

I really wish that I utilised social media, in particular Twitter sooner, as the support from fellow ‘spoonies’ has been and continues to be overwhelming.  I have received many lovely messages from people I have never met on those many bad days; just little messages to serve as a reminder that I am not alone. I do not walk alone on the journey of living with chronic illness.

I have made some special and life-long friendships with women I have met through social media and through this blog and other projects.   In many ways these friendships are stronger and more meaningful than any other friendships I’ve ever had before, despite never having met in person.  It is true that friends are like stars; the distance between two people does not diminish the strength of the friendship.  The test of a true friendship, is whether they are there for you when you need them, and with the friends I have made online, I found that they are, and are true friends.  Something I have never found in friends I have made close to home.

Through living with illness, you really find out who your true friends are
Through living with illness, you really find out who your true friends are

I found myself listening to a song Gavin DeGraw entitled ‘Fire’ and there was a line in the song that I felt really summed up the experience of being a part of the ‘spoonie’ community:

Oh ever since the dawn of mankind

Yes, life with chronic illness is difficult, unrelenting and painful.  But it’s easier to carry on living when you are part of a community of other people who are sadly also living with the effects, supporting and commiserating each other through the difficult times and celebrating the triumphs.  It is a comfort in the knowledge that there are people who understand what it is that I am going through and the difficulties that I face as a result of living with a neurological condition.  This is clear from emails and messages I have received as a result of writing this blog; they thank me for sharing the post and writing words that they cannot express themselves.

Our bodies may be weak; some perhaps are even failing but standing together, we are stronger.

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HAWMC Day 28: H.E.A.L.T.H

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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 given prompts.

Tuesday 28th April: H.E.A.L.T.H 

Use ‘health’ as an acronym and come up with words that represent your Health Activist journey.

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H is for HOPE

As I have written in earlier posts, hope is a vital ingredient for life with a chronic illness.  Hope acts as a survival mechanism for when we are at our lowest ebb.  It is what motivates us to overcome the obstacles blocking our path, to push forward and carry on living.  Hope is the line between creating and maintaining a happy and meaningful life despite chronic illness or being consumed by the negativity that illness can create.  Hope allows us to have something look forward to when it seems our future looks bleak.

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E is for EDUCATING

The aspect I love is the reciprocal nature of being a ‘health activist’.  As much as my blog and my writing as well as my presence on social media helps to educate and inform others of neurological conditions such as the brain stem lesion I live with or the impact of chronic illness in general, I also enjoy learning of other chronic conditions and the impact that these creates in the lives of the individuals living with them.  I have learnt so much about other chronic illnesses from reading various blogs that I love reading and by getting to know others on social media; in fact, I have even been known to diagnose patients on certain medical dramas from what I have learnt from other bloggers and health activists!

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A is for AWARENESS

An important part of living with a long-term health condition is self-management.  Therefore, to be able to implement a self-management programme it is important to be aware of every aspect of your particular chronic condition.  We need to be aware of potential triggers that can induce symptoms, so we can stay away from them as much as possible and not exacerbate the condition.  It is important to also be aware of anything that eases symptoms for when they do occur.  It is about making positive conscious decisions to help ease symptoms as much as possible and to improve quality of life.

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L is for LISTENING

It is so important to listen to our bodies.  Your body knows what it is capable of, and so we need to be listen to them, especially if your condition is one which tends to fluctuate.  In order to be as well as possible we need to be aware of any changes in symptoms and act accordingly.  An example, and one which I have done a lot lately, after listening more to my body, is taking a rest when needed.

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T is for TWITTER

I have come to absolutely love Twitter and use it a lot to communicate and connect with other health advocates, bloggers and spoonies in general.  As well as using it as a tool to promote my blog and the writing I do as a result, but I have also built a lovely support network with others who or have had experiences with chronic illness.  It is a great tool to use as a way of sustaining a role in health activism, by tweeting information, links and sharing other blogs regarding the condition being represented.

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H is for Hobbies

Living with a chronic illness, it seems can often take over our entire lives.  It really does, everyday symptoms dictate to us how our day is going, what we can and cannot do, and so on. It can make us feel that sometimes we have no control over our own lives.  It is important therefore to have a life outside of illness.   One way to do that is to find hobbies and interests away from illness.   It is great to have hobbies as away of distracting oneself from debilitating symptoms and helps alleviate the effect of them on our lives.  Don’t let what you can can’t do interfere from doing what you can do!

I’ll be there for you…cos you’re there for me too…

tumblr_lr8hwvvEai1qmupweo1_500 Throughout my teenage years, I was a massive fan of the television show ‘Friends’.  Not only was the show incredibly funny but I also loved the relationships between the six main characters – their strong bond of friendship and how they were constantly there for each other.  However, although the show was entirely fictitious, I also found myself feeling envious of the close friendship as; unfortunately, I had none of my own after my so-called friends abandoned when symptoms, especially the dizziness started interfering with my everyday life.  There is nothing like a diagnosis of a neurological condition, or any other chronic illness to show who your real friends are. After leaving university and entering adulthood, the problems regarding friendships have not improved.  Many friends that I have made, unfortunately no longer in contact with me; despite my attempts to do so.  This is something that has hurt me deeply over the years, especially as I thought of them as close friends.  I am not sure the reasons behind the now lack of contact – the reason may lie in their own prejudices towards my conditions, or perhaps they failed to understand the reasons behind my inability to go out to places that I find uncomfortable and can precipitate an attack of vertigo.  Whatever the reason, however, it hurts deeply and has often led to a decrease in self-esteem and self-confidence as a result. In my last blog post, I write how many of my symptoms have recently worsened and furthermore how I have struggled both physically and emotionally because of the sudden deterioration.  What has also made it harder is the loneliness and isolation that I have felt when in the house during this period.  It is during these times that I wished that I had friends living close by that could pop by for lunch or to take me out to distract me from my severe symptoms and make me feel that I am less alone in my struggles with living with this condition.

Although I may have a distinct lack of friends living nearby, I have however made a lot of friends online that although the distance between us is significant, they should not be excluded from this discussion into friendships and chronic illness.  These friendships that I have developed online through the blog and social media have come to mean so much, as they too also experience chronic illness or other long-term chronic conditions and therefore understand exactly what it is like to live with them and thus gives support like no other.

Furthermore, by using tags and hashtags on social media such as the term ‘spoonie’ (a person who is living with a chronic illness or chronic pain) is not only fantastic at connecting with others going through similar experiences but also makes us feel that we are part of a community.  A fact that is important as due to our conditions we often feel excluded in other areas of life.

Tweet: The term ‘spoonie’…makes us feel that we are part of a community… http://ctt.ec/XB4rF+ via @serenebutterfly

And it is thanks to these online friendships that I now feel that I have people outside my family that actually care about me.  It has also led to the feeling that I am worthy of such friendships (as I have been burned by many people in the past, I often felt that there was something wrong with me, or was not worthy of friendships).

It is surprising that these online relationships can develop into such strong and meaningful friendships.  For many of us living with long-term health conditions, or conditions which prevent us, or makes it difficult for us from getting out into the community we know that it is these friendships that are so important to us and makes life living with illness a little easier.

In my experiences, I have often found that the friends whom I have met online actually keep in contact with me, or even cares more about me than the people who are in my real-life existence. images A favourite saying of mine is “Friends are like stars.  You don’t always see them, but you always know that they’re there…” and it is certainly true regarding my fellow chronically ill friends.  Just because I don’t see them, it does not make the friendship any the less relevant or real – what is important, however, is that they continually are there for me during my struggles and even through the good; and also that they show concern and support when I need it.

Tweet: Friends are like stars. You don’t always see them, but you know they are always there http://ctt.ec/HUlcN+ via @serenebutterfly

So, what if it comes through a computer screen instead of face-to-face interaction, isn’t the fact that we have made a connection with another person the most important point? But perhaps there are ways which I can develop these friendships further – maybe by swapping phone numbers with friends I have made online. Or start using Skype as a means of keeping in contact with people may be a start in gaining support when I am in need, and to also give support for when I am required to support someone else in need?

So, I am interested – what are your experiences of friendships and life with chronic illness?  Have you still managed to maintain friendships with those in your real-life existence? Or do you rely on friendships that have developed through online communication?  Love to hear your thoughts and comments on this subject so please don’t hesitate by getting in touch by commenting below or even getting in contact via social media (links can be found by clicking the icons at the top of the page).

Writing for my health…and my life

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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:

Why I write…Tell us why you write about your health.  How long have you been writing?  What impact has it made on your life?  Write for 15-20 minutes without stopping.

Why do I love to write about my health and my life with it?  Well, for starters I would like to think that writing is something that I am good at; when living with a health condition, particularly one which is rare and unusual it is therefore only natural to want to raise awareness of the particular condition with which you have been diagnosed.  For some people, raising awareness may involve organising events, or even speaking in public regarding their life and their condition.  However, as I am an introvert and extremely shy, I therefore do not feel comfortable with public speaking and feel much more comfortable in expressing my thoughts and feeling on paper rather than speaking them out loud.  Writing allows me to process my thoughts and feelings regarding my life and the condition that is a large part of it – writing is a very cathartic experience by writing down all my thoughts and feelings, especially the bad.  Writing enables you to process your emotions, letting you to let off steam and providing a safe emotional release from the pain and anguish that often accompanies life with a chronic illness.

Another reason why I decided to start the blog and utilise social media as a part of documenting my journey with living with a neurological condition was to connect with others.  For such a long time, I felt so lonely and felt as if I was the only person in the world experiencing what I was going through and therefore, I reached out to the health community in a bid to gain support that I could be provided with by the medical community.  Friendship and knowledge from others experiencing chronic illness like myself was also something that I wanted to find through the health community as my world had gotten smaller, and as I am unable to get on my own, it is therefore difficult to meet others in real-life.   Furthermore, I also thought that keeping a blog, would occupy my time and give me a project that would help with the boredom and monotony that comes with living with an illness and being stuck in the house for long periods as a result.

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But, also I thought it would writing about my experiences with a chronic illness and disability, I could help and do my little bit to educate people on the issues that me and others in a similar situation face.  For example, that not all disabilities are visible.  I have heard  great many stories of people with ‘invisible’ conditions having abuse thrown at them, for example when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces.  This particular anecdote is extremely common amongst those with invisible disabilities, and have even experienced this myself, which I have written about in a past blog post (see ‘Becoming Visible in an Invisible World…’)

 

A fantastic benefit of using social media as a means of communicating about chronic illness
A fantastic benefit of using social media as a means of communicating about chronic illness

Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence of alcohol after he was unable to walk in a straight line when asked to perform a sobriety test.  Therefore, it is important for those, like me suffering from a  chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’  it however does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see.  This reminds me of the many  times when I have gone such as to the doctor’s for an appointment, where I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and looked perfectly healthy.

To conclude, writing and blogging about chronic illness provides an excellent means for an emotional release of the emotions that accompany life with a chronic illness, to connect with others who are living in a similar situation and to educate others’ on the issues that we often face because of chronic illness and disability.

The People I Love to Follow…

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Welcome to the fifteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Favourite Fridays: Who are your favourite people to follow on social media?  (Twitter, Facebook, Instagram, etc.)

 

 

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The first person that I love to follow on Twitter is of course my best friend and surrogate sister @AishaJemima.  Aisha is a truly inspirational woman; who is determined to fight for all those suffering with chronic illness through her work establishing ‘Unseen Magazine’; a magazine coming soon for everyone living with or caring for someone with a chronic illness.  Although, fighting with a chronic illness herself, Aisha works very hard behind the scenes on the magazine, but more than that despite everything she has to contend with her tweets are always extremely positive and uplifting and as well as this she is always sends a lot of support to a great many number of fellow ‘spoonies’.

An example of the positive and uplifting tweets I have received from Aisha:

 

Another person on Twitter who I love to follow is another ‘spoonie’ friend of mine @anyadei.  Anya is a very compassionate and intelligent young woman who is extremely passionate about patient advocacy and self-management of long-term health conditions.  On social media such as Twitter Anya, always raises great and though-provoking questions regarding  topics relating to healthcare, self-management of long-term health conditions and patient issues; as well as tweeting links to a variety of different articles relating to issues she is clearly so passionate about.  And as well as all this and working in this particular field and battling several long-term health conditions herself, she still remains extremely supportive of myself and other spoonies on social media; with supportive tweets sent on days which are proving to be very bad.  It is tweets such as these which really make these bad days bearable.  Thank you xx

And finally…

An organisation that I am involved with and following on various forms of social media is @NeuroNula.  As someone who is living with a long-term neurological condition myself, I know how little support there is out there for neurological conditions.  And not just support but also information regarding other services and organisations that can provide services for patients with neurological conditions.  Therefore, that is why I love following Neuro Nula on social media as well as sharing or retweeting messages that they have posted – if it can help one person to feel like they are not alone in this journey of living with a neurological condition as I have done for so long then it is a job well done.  I really look forward to seeing the final website and meeting other people with neurological conditions and gaining new friends along the way!

NHBPM Day 1: “There’s always an app for that…”

 

 

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It’s November which means only one thing – it’s time again for the National Health Blog Post hosted by WEGO Health! And once again I am determined to take part and write a post everyday regarding my experiences with chronic illness.

As a member of the Chronically Ill community or a ‘spoonie’ as we are more commonly referred (see my post regarding spoonies and the spoon theory here) I need a number of different apps for a variety of different reasons – those apps to remind me to take my medications throughout the day; apps to help keep track of my personal health conditions such as the frequency and severity of the symptoms I am experiencing.  But I also have a number of apps that I use regularly that although not health-related, they do help me through bad times due to chronic illness such as Twitter and Facebook to help me keep in contact with all of the friends that I have met during my personal  journey with illness.  And there are some games that I play to keep me entertained whether it be in bed when I am too weak to get out of bed, or whether it be for the long waits at hospital waiting for my appointment to begin.  My personal favourites are ‘Candy Crush Saga’ and ‘Pet Rescue Saga’, and fun word games such as ‘4 Pics 1 Word’.  I also use Instagram to not only document in pictures life with my neurological condition but also to help document successes such as going somewhere new or simply as reminders for fun times to look back on when things are bad.

 

There's an app for that!
There’s an app for that!

 

However, those are the apps that I have on my smartphone, but now technology has developed, I also have apps on my tablet computer which I use when I am stuck in bed or when I am pottering around the house to distract myself from the horrible symptoms.  The apps that have made it on my tablet are more entertainment based for the reasons that I have given.  For example, I have ‘Netflix’ so that I can watch films or TV programmes from the comfort of bed; and especially convenient as it saves a trip out of bed to put a DVD on as my legs are sometimes too weak to be able to do just that.  As well as ‘Netflix’ there is also ‘Sky Go’ and catch-up services such as the ‘BBC iPlayer’ and ‘ITV Player’ to allow me to catch-up on programmes that I have missed.  I also have a jigsaw puzzle game that helps distract me from the pain, trembling and dizziness  which helps, and finally there is ‘Skype’ that I have just downloaded to my iPad that I intend to use to speak to my friends during times that I cannot get to my computer.

As both my smartphone and tablet computer are Apple Products I use the Apple App Store to find the apps that I own.  But for those that are health-related such as ‘Pillboxie’ that I use to alert me to take my medications and the ‘Symple’ app to track the symptoms I experience it may also be useful to talk to other spoonies suffering from a similar conditions as yourself to find apps that they find useful.  And always try the free app first and then if the app is right for you and your needs then purchase the full version.

 

Links to Apps that I have found useful:

  • Symple:  An elegant symptom journal for your iPhone. Easy to use, and flexible enough to meet any set of symptoms, regardless of condition or disease
  • Pillboxie: Pillboxie is the easy way to remember your meds. Other med reminder apps are either too complicated or just downright boring. Pillboxie is easy because it lets you “visually” manage your meds. Scheduling a reminder is as easy as dropping a pill into a pillbox

 

Social Media and the chronic illness experience

This post is for the ‘Patients for a Moment Blog Carnival’ hosted by Leslie at ‘Getting Closer to Myself‘.

This month’s theme is Social Media and illness, with which there are two parts!  The first part is to describe our illness using just 140 characters; just as if we were using Twitter to do so.  This could just be one statement characterising the illness experience, or a series of statements of 140 characters.

The second part of the challenge asks us to describe how social media has personally impacted our illness experience.

So, how can I describe my condition just using 140 characters?  Well, this could be extremely challenging giving the complexity and the unrecognised nature of my illness.  But here it goes…

Neurological condition affecting the brainstem. The effects include constant dizziness, vertigo and spastic paraparesis affecting the legs

The first part is self-explanatory, obviously the illness that I live with is a result of a neurological condition, known as a long-standing brain-stem lesion.  The lesion is scarring of the brainstem, possibly as a result of a head injury of birth, although as it was diagnosed years later, the exact cause of the lesion is unknown.  The effects that I listed are the main symptoms that I experience as a result of the neurological condition.  As the statement suggests this include the constant dizziness (feeling as if my world is unbalanced), vertigo (as if the world around me is spinning).  The spastic paraparesis is another symptoms that is troublesome to my daily life.  It affects primarily the legs as suggested by the above statement.  It causes stiffness and weakness of the legs which makes it uncomfortable and at times very difficult to walk.  Often due to the weakness, it can cause my legs to suddenly give way from under me.  Recently, I have been battling severe trembling in the legs, a jelly-like feeling in my legs, which above all is extremely uncomfortable and leaves me unable to stand for long.  Of course, there are other symptoms that I experience such as nausea, neuropathic pain and fatigue.

Are you able to describe your condition in 140 characters?  Give it a try!

 

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To the second part, then!  How has social media impacted my illness experience?  For starters, the impact upon my illness experience is mainly positive.  Social media, not only allows patients to connect with others and share their stories and experiences, it also allows patients to raise awareness of their particular chronic illness, and share with others what it is like to live with illness every day, and everything that goes with it, for example, I often tweet via Twitter on how I am feeling, and attempt to write how the symptoms affect me and what it is like to live with them.  Not only is social media fantastic and advocating and raising awareness of illness, but it is great to connect with others, particularly when we are experiencing a flare or relapse, and gain support from other patients in similar circumstances.  It provides camaraderie for those experiencing chronic illness, like myself.

Think about when you are ill in bed, it often involves being stuck in bed, alone whilst everyone else is busy living their lives.  Asa  result, it often leaves you feel lonely and isolated, right?  Think if illness was a regular part of your life; being stuck in bed, lonely in your bedroom with no company was a regular part of your routine.  That feeling of loneliness and isolation is also a regular part of your life, however Twitter and other forms of social media, provides patients with chronic illness a perfect tonic, as it allows to converse with other people even when in bed via new technologies such as smartphones and tablets.

It provides entertainment and diversion from illness.   Often, when I am bed bound due to the extreme weakness in my legs, or due to severe dizziness, I am very grateful for the supportive messages that I receive on Twitter from other chronically ill patients and friends; they really brighten the day, and also reminds me that I am not alone on the journey through illness.  Social media provides real-life perspectives on illness, and besides the entertainment and social aspects, perhaps the most valuable features of such sites is it’s a place free from judgement and stimatisation that many experience in the real-world, as well as educating others about particular medical conditions in order to tackle the problem of stigma .