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HAWMC Day 14: Trying to take on the world…

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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 on given prompts.

Tuesday 14th April: “I feel best when…” 

Write about moments when you feel like you can take on the world.  Where, when and how often does this happen?

Again this is an extremely difficult prompt for me to answer.  For some time now, too long to remember when it started, but the symptoms have become much more severe and debilitating.  As well as the deterioration in the severity of the symptoms, the symptoms themselves over the years has become constant.

It now seems that I never get a respite from the symptoms such as the dizziness, trembling in the legs and pain.  Not all the symptoms, however, are constant, for instance, certain triggers provoke visual disturbances, and although these symptoms are not consistent, they still occur more than they used to.

Therefore, as I never get a break from living with the symptoms, every day can often feel like a struggle and can feel that I never feel my best and able to take on the world.

This is especially the case when going out after a restless night’s sleep due to pain, which has been the case for a few months.  Furthermore, as the trembling and dizziness are so bad, it is a struggle to be able to get out of the house, never mind finding the stamina to take on the world.

Living with symptoms which are constant can make it difficult to be able to take on the world
Living with symptoms which are constant can make it difficult to be able to take on the world

Although, I do find that when I am feeling at my worst due to the pain and trembling in my legs as well as the dizziness and I somehow find enough strength and determination to achieve something that I have struggled to do, such as going to a place that is difficult for me (e.g. retail stores which have high ceilings or a lot of fluorescent lights).

When I do, I suppose it is the closest I can feel to being able to take on the world; I experience a surge of confidence when I have been able to battle through the debilitating symptoms to achieve a goal.  I cannot remember when the last time it happened, but I can remember feeling so happy and proud of myself after managing to stay in a local Next store despite struggling to cope with severely trembling legs and horrendous dizziness.

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The symptoms were so severe that during the entire trip, I felt like I needed to get out of the store and go home.  However, despite how bad I felt, I fought through the symptoms and managed to stay in there, even long enough to queue and buy an item of clothing.  For me, at this time it was an immense achievement as there were many times when I was unable to go to the store due to my symptoms.

I also notice that when I can push through the symptoms and able to accomplish a goal, I am also able to do more and go to other places too.

Perhaps it is the little achievements that we as spoonies manage to carry out despite living with debilitating and continuous symptoms that can make us feel like we can take on the world.

 

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In Chronic Illness

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.

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In Chronic Illness

To dream of the future…

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As most of you know, each Wednesday, I attend a group called ‘Life 4 Living Pontypridd.’  The group is a social one, which promotes positivity and friendship among its members.   The focus of the group is to promote people’s strengths and enjoy life despite one’s own personal circumstances.  One such way, to promote a positive outlook, we have been asked to devise a ‘Bucket List’ – a wish-list that one would like to achieve before they ‘kick the bucket’, or in other words die!

 

 

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It is thought that the phrase derives from the Middle Ages, when execution by hanging, consisted of a noose being tied around the neck whole standing on an overturned bucket.  When the said bucket was kicked away, the victim would hang until dead, hence the phrase “kicking the bucket”.  The term has recently been popularised, by a film starring Morgan Freeman and Jack Nicholson, of the same name, about two terminally ill men meeting at a hospital, and devises a wish-list of to-do’s before dying, which they attempt to complete together on a road trip.

 

 

The film 'The Bucket List' has popularised the idea of creating such lists of things to do before you die!
The film ‘The Bucket List’ has popularised the idea of creating such lists of things to do before you die!

 

 

Initially, the idea of a such a list sounds morbid and depressing; seems to be planning the end of your life, instead of living life whilst we still have it.  It suggests a “check-off the boxes” approach to life; sitting round waiting to die.   However, isn’t the phrase more to do with living than dying?  Wouldn’t completing items on such a list make life more meaningful and memorable.  Those memories, are not only positive and meaningful for the terminally ill person, but will also live on after they have gone, by those left behind who were also part of the experience.

Now, the condition with which I live, is obviously is not terminal, and more than likely be around for many more years to come.  In this case, the phrase ‘Bucket List’ is misleading.  How many of you, have such wish-lists?  Would your imminent death, really the main motivational factor in creating one?  The majority of people, I am sure would say no.  Perhaps, it is important, however, for people with chronic illnesses to create such lists in order to accomplish personal ambitions, before the illness prevents them from doing so.  Perhaps, by creating such lists, would provide those with chronic illness with experiences that they can look forward to, whilst they are dealing with horrible, debilitating symptoms, and through treatments that can feel worse than the condition itself.  Whilst studying Psychology at University, I learnt about the importance of goal-setting.  Such goals can motivate us to accomplish items on such wish-lists; and furthermore the most motivating goals are those which are hard and specific, although it does need to be coupled with steps to achieving said goal, but writing a ‘bucket-list’ is the critical first-step.

One of the things, that is on my personal ‘bucket list’ is to someday visit Italy, and I am pleased to say, that my parents and I have booked a cruise for next year and one of the countries we will be visiting is Italy!!  Of course, there is much trepidation on my part surrounding the trip, especially giving the deterioration in my symptoms.  However, it has also given me something to look forward to in the future; even on the days where I have been confined to my bed due to uncooperative legs, it has given me something to smile about and aim for.  It has given me something to think about other than illness, and hospital appointments.

It has really put a pep in my step!

 

 

 

What would you add to your Bucket List?
What would you add to your Bucket List?

 

 

What are your thoughts regarding ‘bucket-lists’?  Are you for or against?  What would you put on your bucket-list?  As ever, I would love to hear your thoughts, so feel free to comment below!

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NHBPM Day Twenty-Eight: The Ever Changing Goal Posts…

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Welcome to the penultimate post of this November’s month-long challenge, thanks to WEGO Health’s ‘National Health Blog Post Month’.  Today, I have used a prompt from a few days ago instead of one of the prompt’s set out for today’s date.  The prompt asks us how have our goals as a patient/advocate evolved?

In my opinion this is a great question, and I believe that often these goals change when a definitive diagnosis is finally given – especially when we are talking about a diagnosis of a chronic illness.  Before, a diagnosis is given of a particular chronic illness there is often hope – hope of a diagnosis, hope of a miracle treatment and eventual cure, and then going back to enjoying life and achieving all those goals set out before illness reared its ugly head.  Dreams of travelling, going to University for a career of your choice, eventually leaving home and getting a place of your own, and so on.

However, then the diagnosis is finally given – and then you find yourself with this chronic illness – one in which there is no treatment, or even cure.  An illness, which is embedded so deep within the body, that it is never going away.  Then the goals will inevitably change – some may have to be scrapped entirely, others the goals posts may have to shift slightly to be able to achieve the dream.

This is what happened in my life.  I once had lots of goals – some I thankfully, have managed to achieve such as finishing University.  Others, however I have not such as gaining a job and starting on the career ladder.  After University, when all of those pressures that were on me all stopped, the deterioration in my health started to show itself – the dizziness became more severe, lasted longer and so on.  By then, I was hoping to be able to start with some driving lessons, so I would be able to get myself a car, and then find that dream job that I had been wanting.  With the severity of the dizziness, however, this was just  not possible.

And so the goals shifted.  From wanting to achieve a start to a career and using the degree which I worked hard for, this changed to getting through each and every doctor and hospital appointment; with every test and procedure I wanted to get myself closer to that diagnosis, treatment and cure.

Then came the eventual diagnosis eventually came in July 2010 – a long-standing brain stem lesion and spastic paraparesis.  Finding out that there was little they could for me other than trying various medications to keep the symptoms under control.  No real treatment, and definitely no cure.  Inevitably, my goals had to shift dramatically, especially when the symptoms deteriorated further, and when my legs began to give way after standing for shorter periods of time. They went from being to find an eventual treatment and cure to just getting through each and every day; to search for the most suited medications for myself so I can live as near as normal life as possible.

And so there are my goals for today – just to get through each day as best as I can; to live a happy and as normal life as best I can; to make the group that I am secretary of the best it can be.  Sure, I have other goals such as wanting to visit Italy, to meet my favourite author, but these goals might have to be on the back burner at least for now….

As always, would love to hear your thoughts and views, or messages of any kind!  Are you a patient?  Have your goals changed, and if so, how?

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