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!

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HAWMC Day 15: The Joy of Letters

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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.

Wednesday 15th April: Get Excited! 

What revs up your internal engine?  When you see, hear, feel this it gets you excited and ready to face what comes next.  Tell us what it is!

In my recent experiences with dealing with severe and debilitating symptoms due to chronic illness, it is often very difficult to get excited about anything.

In the mornings, experiencing severe symptoms such as dizziness, pain, nausea and trembling, it is often a struggle to get through the day with enthusiasm and joy.

Recently, however, I have joined several group through the internet, where you can meet and become pen pals with other people.  A couple of these groups are especially for those living chronic illnesses, or other long-term health conditions.

It is lovely receiving small gifts, or letters through the letterbox especially when they arrive unexpectedly.  Reading positive, inspiring and motivational words from others can be a real boost to start the day, especially on the days which are particularly bad.  These words are especially special and meaningful when they come from other people also living with chronic illness and therefore can understand the challenges and difficulties that I face living with a neurological condition.  Receiving cards and letters are much more personal than emails for example, and are lovely to keep and look back on when we really are in need of a lift or a reminder of everything good.

Something really special about receiving letters, don't you think?
Something really special about receiving letters, don’t you think?

Writing and keeping in contact with other people also allows me a connection to the outside world and as a way of making new and maintaining existing friendships, as the severity of the symptoms I live with keeps me in the house a lot of the time, and as I am unable to get out of the house unless I am accompanied by another person.

It is not just receiving cards and letters that evokes happiness.  It is also writing and sending cards and letters to others that brings me joy and happiness; the thought that the cards and words that I write will cheer up and help somebody else is also pretty exciting!

Writing and receiving letters is a real joy
Writing and receiving letters is a real joy

Get knocked down…but I get up again

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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:

Theme Song…Imagine your health focus or blog is getting its own theme song.  Think “Eye of the Tiger” for Rocky Balboa.  What would the lyrics be?  What type of music would it be played to?

 

This is a tough question…how do you find a theme song for a condition, which is for one unusual and rare, and secondly one in which you do not entirely understand yourself?

Then, I though that I would base my choice of theme song on the experience of living with my particular condition.  For example, the weakness in my leg; this is one of my main symptoms and one which causes the greatest burden in my life.  The burden that it places, is largely due to the severe weakness and trembling in the legs – for example, I am unable to stand for very long and are known for giving way on me without any warning and at the most inconvenient times.  This has led to many falls in public; as well as falls down the stairs and even whilst walking up the stairs!  These falls have been increasing in number recently, you can read a previous post entitled ‘Falling Down a Vortex‘ which describes my experience of my condition as it is currently, as well as describing a recent fall down the stairs I had in which my Kindle bared the brunt of the damage as it is beyond repair as a result.

The majority of the time after a fall, I am left unable to get straight back up because of the fatigue and weakness in my body, that the condition has left me with.  However, no matter how long it takes me to recover from a fall, I do eventually rise and get back up.  And so, that is the reason why I selected the one-hit wonder ‘Tubthumping (I Get Knocked Down) by Chumbawamba) as the theme song for my condition.  Perhaps not the entire song, mind you (especially as it is a song about drinking and getting drunk! Honestly my falls are because of a medical condition and not because I am inebriated), but just the following lyrics taken from the song:

I get knocked down
But I get up again
You’re never going to keep me down

 

These lyrics, in my opinion, reflects life with any chronic illness.  Chronic illness, forces us to be knocked down a lot of the time  by worsening symptoms, as well as being knocked down emotionally.  But just as the song suggests, we eventually get up again.  We are all  fighters.  We are all survivors.  And as fighters and survivors we never allow our illnesses beat us and keep us down for long.

The song is also extremely catchy, and just like any catchy song, it is one you cannot get out of your head – just like chronic illnesses.  We are unable to forget about it; and it is in our heads constantly, just like an upbeat unforgettable pop song!

Here is a video of the said song for you to enjoy!:

 

As a note, I would like the opportunity to publicly thank Amazon UK who after hearing about my accident and my broken Kindle, very kindly offered a replacement one free of charge!  It was so lovely of them and cannot thank them enough for their amazing generosity!

Laughter…best remedy for life with 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.

The first prompt reads as given:

Laughter is the best medicine…In honour of April Fool’s Day, is there something that always makes you laugh? A memory, favourite joke?

 

The old adage “Laughter is the best medicine…” may not be original and slightly banal; but after living with chronic illness for many years now, it is one that is undoubtedly true.  On bad days, when you are feeling awful, and it seems as if there are storm clouds directly above your head, finding something that makes you laughs, just brightens the day and lifts the spirits.

My dog Honey makes me laugh constantly on the bad days; she is such a little character.  Take the other day; whilst preparing the Sunday dinner, a few loose potatoes dropped onto the floor, and like the dog she is, Honey immediately picked one up from the floor, and as she is so stubborn would not leave go!!  This led to Honey having the potato in her mouth for approximately 15 minutes, just wandering around and not wanting to let go!  Here is a picture of her with the said potato:

 

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After finally prising the potato from her mouth; Honey came back in with yet another potato in her mouth – clearly, we missed a potato on the floor, which did not go unnoticed by the dog!

It is these little antics, and the small things that she does everyday such as giving me kisses, or licking my feet that never fails in making me smile and laugh on even the worse days with my chronic condition.  And it is these smiles and laughs which makes life worth living, even when the symptoms are so severe that it feels as if you cannot survive another day with them.  So, on the bad days, even medicine cannot make one feel better, but laughter and finding things which make one smile really helps brighten the day despite living another day with chronic illness.

Chronic Illness and its awkward situations can be embarrassing but they can also make us grow…

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Welcome to the sixteenth 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:

Well, that was embarrassing…  What’s the most awkward situation your health condition ever put you in?  (Don’t be bashful, we’re all friends here).  Maybe you can look back on it now and laugh, but it wasn’t so funny then

I suppose, one of the benefits of living with an invisible health condition is that when you are out of the home and walking amongst the healthy, others are not aware that you have a chronic illness and you are able to bask in the pretence that you are just like everyone else.  I used to be able to do just that; walk around as if I was perfectly healthy, ignoring the dizziness, pain and weakness that was reminding me that I wasn’t like everyone else.

However, after the condition started to worsen, the awkward phase of my neurological condition began to present itself – frequent fall in public.  Yes, it happened in shops, at home, at houses of friends and family as well as the centre where I used to volunteer – my legs would suddenly give way which resulted in my entire body collapsing to the floor.  I found this extremely embarrassing , especially at the times when I was unable to get up straight after the fall because of the weakness in the legs.  Looking back I do not think it was just the situation that I found awkward and embarrassing, which I did especially given my age and partly because at that time I didn’t know what was wrong with my body.  No, it was also the attention that it caused from others who were around, the stares and the fuss that these falls caused; it was especially embarrassing when it happened in shops and being helped by elderly people who were much older and obviously fitter than myself!

Of course, this happened, not just the one time but happened extremely frequently for several years.  Then, once it happened right in the middle of a popular clothes store in town when I was out with my carer, and because of the weakness in not just my legs but throughout my entire body, I was unable to get back up for approximately ten minutes and so had to be helped by several members of staff and my carer to a stool that they had lent me.  The shop at the time was quite busy and there were several members of staff, so as it happened in front of so many people was very embarrassing especially given the stares and people asking me if I was alright and if there was anything they could do (don’t get me wrong I find that to be very kind and thoughtful but still it doesn’t make any less embarrassing!).

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Looking back at this particular incident however, I now realise that it was an important part in accepting the deterioration in my mobility and overall condition and finally accepted the need for the wheelchair.  Perhaps, it is an incident that was awkward but one which was enlightening and shone the light on an aspect of my life that was changing but could do something to help me adapt to the new situation.  It also shows that awkward and embarrassing situations, although can be upsetting and distressing, they can prove to be situations that cause us to learn and grow…

Has your health condition caused you to have an embarrassing incident?  Would love to hear your comments and thoughts as ever!  Please leave any comments below!…

The Evolution of a Patient

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Welcome to the thirteenth day of the National Health Blog Post Month Challenge.  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:

Evolution: Write about how being a patient or caregiver has changed you.  How have your goals changed?  Have your values changed?

Patience; as a patient I have developed far more patience than I had before being a chronically ill patient.  In my opinion, patience is definitely a quality you need when becoming patient, especially when waiting often weeks or even months for hospital appointments, and for test results, and everything else that being a patient entails.  Although it is extremely frustrating having to wait so long for appointments and test results, I also think that having contact with other patients whether it is in real-life or via social media, can make this easier to bare as it makes you realise that you are not alone and able to support one another on the journey through being a chronically ill patient.

In addition, being a patient has also changed me in regards to knowing when to listen to my body.  Often, my chronic illness leaves my body very fatigued, and when this occurs  I know that I need a nap.  The consequences of not listening to my body can result in overwhelming weakness throughout my entire body as well as severe dizziness and vertigo, which can then result in being bed bound for a length of time.

Before being a chronically ill patient, I perhaps held too much faith in doctors; often seeing them through rose-tinted glasses and thinking that they are able to fix all the ailments that are presented to them.  However, after being a chronically ill patient myself, I have sadly had first hand experience in learning that often doctors are not able to cure every ailment and illness; I had to learn to accept that endless consultants were unable to cure or even help me.  I had to evolve as a person with a long-term health condition, and instead of relying on doctors to help me with my condition, I had to learn to rely on myself and learned to adapt and introduce my own coping strategies to help me cope with my health condition and new situation.  For example, recently I have learnt that mints really help with reducing the nausea that I experience and therefore as a result I know to always ensure that I have a pack in my bad when I go out.  In addition, as the dizziness has been particularly bad recently, I have learnt that wearing a hat with a brim helps somewhat as it blocks out the visual stimuli that I find bothersome and can precipitate an attack of vertigo or worsen the dizziness that I already have.

In terms of goals, they have changed considerably since my diagnosis in 2010.  I had thankfully, already achieved a major goal of mine in completing my University education and gaining a degree in Psychology.  However, other goals such as travelling, moving out of home and getting my first job had to be put on hold whilst my illness was bad and we were still searching for a diagnosis.  Now, that we have that diagnosis, and especially since last week’s hospital appointment which all but confirmed the dizziness as being neurological and being a lack of treatment or cure; as well as my current state of health then I am not sure whether I will achieve any of those goals that I so dreamed of years ago.   Perhaps I will given in time, although the goal posts may have to change slightly.  For example, I always had dreams of travelling to Italy, with friends, and although this dream is set to come true next year when I go on my cruise, I am not attending with friends but instead with parents as with my condition I will need looking after if and when flares occur during the holiday.

I am sure that my values have changed also; living with a chronic illness, you realise what really is important in life, and all those little mundane things that once seemed really important, don’t seem to all that important anymore.  I would like to think living with a long-term health condition and disability has made me more caring towards others and as a result am less judgemental and more tolerant towards others.

Please, don’t judge me…

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Welcome to the sixth day of the National Health Blog 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 upon given prompts provided by WEGO Health.

Today’s prompt reads:

Say WHAT?! What’s the most ridiculous thing you’ve heard about your health condition?  Was there any context? What did you think at the time you heard it – and what do you think of it now?

 

This is a tough prompt relating to my health condition as because it is rare and few people really know about it, then as a result I don’t really hear ridiculous things regarding my illness.  So, I had to go back to the thinking board for this one.  Then I remember a comment I heard whilst out with my carer.  The incident happened a couple of weeks after I started using the wheelchair.  This one week we arrived in our local town and decided to go for a drink and so after my carer got the wheelchair out of the boot of the car and set it up, I then got out of the car to get in the chair.  To do this, I took a tentative and wobbly steps to the wheelchair, and when we were ready I wheeled myself to the local coffee shop.  After ordering, and whilst waiting for the order to be ready, I went to look for a table for us to sit at, and as my carer was still at the counter waiting for our drinks, I began to check my emails, when i heard a conversation between a middle-aged couple at the next table.  “Tsk, I saw her outside walking to the wheelchair; she obviously doesn’t need it!  She must be lazy!”

I was so shocked and upset that I didn’t say anything to the couple and instead focused on my phone, and then as my carer arrived with our drinks, put a smile on my face and started a conversation.  Afterwards, I was very angry – how dare they judge me!  How dare they judge a situation that they don’t know and obviously do not understand.  It saddens me that judgements regarding disability still hasn’t changed despite the so-called legacy of the Paralympics from last year.  I’m not saying however that these judgements are representative of the majority of people, but there are still a minority who assume that just because I am physically able to walk, means that I am not in need of a wheelchair.  I am sure they would think very differently, if they had seen me stumble around and legs giving way because of the weakness.  Yes, I can physically walk but doing so not only causes great discomfort and pain but am also on edge and waiting for them to give way, so using such an aid not only saves me from endless falls but also allows me to enjoy trips out without the worry of when they are next going to give way.

Have you heard something ridiculous about your health condition>  If so, what was it?  How did you feel or react?  Feel free to comment below…