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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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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…

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HAWMC 2013 Day 8: When you hear hoofbeats; think Okapi and not horses!!

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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:

If your health condition (or the health condition of a loved one) was an animal, what would it be?  Is it a real animal or make-believe? 

If my health condition were an animal , I would compare it to the Okapi.  A real animal that is closely related to the giraffe, and which resides in the Ituri Rainforest, in the northeast region of the Democratic Republic of the Congo.  It is thought that there are only 10 to 20 thousand still living in the wild, and therefore the sight of one is rather rare since they are close to being endangered.

The Okapi
The Okapi

I have chosen the Okapi as a metaphorical representation of my condition, as like the Okapi, my condition is also rather unique and rare.

Often, with doctors when they hear symptoms, they often “think horses, not zebras.”  Perhaps this is the reason for many misdiagnoses, and waiting, often for years for the correct diagnosis when dealing with rare or unusual conditions.  Doctors assume the symptoms are the result of a more common illness or disorder; such as when people assume hoofbeats are caused by horses, and not zebras.  Therefore, when considering an animal as a representation of my condition, it has to be one which is rare and unusual, and one in which others are not likely to consider.

Furthermore, as a result of my condition, the symptoms that I experience, such as the dizziness and vertigo, can also be found in many different conditions as well as my own.  The Okapi, is very often said to reminisce with another animal also – the markings that it has, bares similar similarities to that of the zebra, and therefore often mistaken to related to it, although the Okapi is said to be closely related to the giraffe.

What would I name the animal?  For this I would have to go for ‘Bambi’ – yes, I know Bambi is famously a deer, but with the weakness in my legs, and the problems with the balance, I do look like Bambi a lot of the time.  Imagine in the film when Bambi is trying to get up and walk – that is very much like me when my legs are weak; often unable to support me, and so legs collapsing just like Bambi’s is a regular occurrence for me!

My own ‘Okapi’ then would be extremely clumsy and off-balance to represent the weakness in my limbs; and would sleep for hours on end because of extreme fatigue.  However, the ‘Okapi’ would also show strength and stubbornness as like with everyone battling chronic illness both of these traits are needed to get through each and every day.

So, next time you hear hoofbeats, think of the Okapi and not horses!

If your condition was an animal, what animal would you choose?  Have fun with it; and let me know!  Comment below!

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HAWMC 2013 Day 7: Say What?

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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:

Say WHAT?  What’s the most ridiculous thing you’ve heard about health or your condition?  Where did you hear it and what did you think? 

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I once heard, a few years ago, by a doctor, that the dizziness I was experiencing was simply in my imagination and couldn’t possibly be experiencing it as I was far too young!  Yes, dizziness is often discussed in relation as a symptoms often experienced later in life and sometimes referred to as “just another part of getting older.”

However, although dizziness is often seen in older adults, many of us, from experience, know that it can occur at any age, and can be as a result of a number of different factors.  Dizziness can be as a result of a head injury, degenerative diseases and other physical ailments.  And as I have read countless of times, during research, symptoms of dizziness are not normal at any age and are a sign that something is wrong, and therefore should be investigated.

Obviously been told this, and especially, someone in a position of power, like a doctor, and given that I was very young was distressing.  Distressing to think that although the dizziness was severe and affecting me so badly, that no-one believed me.  Telling me instead that it was all in my head also meant that the dizziness I was experiencing was not being investigated by doctors, and therefore further delayed me getting the correct diagnosis.

Obviously any symptoms that someone is experiencing which is out of the ordinary should be thoroughly investigated until all avenues have been exhausted, for peace of mind if anything.

What if the doctors that I visited took my dizziness more seriously?  Perhaps then I would have gotten a diagnosis more quickly.  Would it have made a difference in terms of treatment?  Would the dizziness be less severe if I had interventions sooner?  That I cannot answer but it would have meant that I wouldn’t have gone through so many years of believing that the dizziness was all in my head.

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