Category

Chronic Illness

Category
In Chronic Illness

Please, don’t judge me…

No Comments

nhbpm_daycount-06

 

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…

by
Keep Reading
In Chronic Illness

Encountering Problems in Healthcare

No Comments

nhbpm_daycount-05

Welcome to the fifth 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:

Election day! Votes are in – you won!  If you got elected as President (or Prime Minister, for those living in the UK!), what are the three changes you would make to healthcare?

In the UK, in my opinion we are very fortunate to be provided with a National Health Service; free medical care for every person living in the UK.  There are many positive aspects with the NHS such as the many dedicated staff that work in hospitals and GP surgeries.  However, the NHS is not without its flaws and although I have received many positive experiences using NHS services, I have also sadly experienced negative experiences and seen first-hand how changes could improve the NHS.

imgres-1

An example, of how frustrating being a patient in the NHS is the unfortunate waiting times for appointments.  The waiting time just to make an appointment with a GP is extraordinary – at my surgery, it is not unusual to wait approximately two weeks to have a non-urgent (or regular) appointment with the doctor.  For hospital consultations it can be approximately a 3 month waiting list.  For a patient living with a chronic illness, like myself it can be a very long wait as we struggle with a flare of the symptoms we live with.  There are approximately 15 million people in the UK suffering with a long-term health condition alone, and after talking on Twitter with other patients, there are many people who have to wait more than a couple of days for a GP appointment.  If the flare is very bad, however, many are then forced to attend Accident and Emergency to get help after failing to get an appointment with their GP.  This obviously increases the NHS load within A and E departments; increasing waiting times and so on.  Therefore, I propose having clinics within GP surgeries and smaller hospitals specifically for those suffering with long-term and chronic health conditions to enable them to get help and advice before their symptoms become so bad that they are forced to attending Accident and Emergency, therefore cutting the number of people attending there and reducing the number of those taking up inpatient beds in hospitals.

images-1

I would also propose making it easier for patients to get in contact with their GP and consultants.  As a patient I am very often frustrated when I cannot contact a doctor to ask a question or get test results.  Messages are taken and supposedly passed on but it can take a long time for them to get back in touch with me.  So, I would make use of technology within the NHS – for example, allowing patients easy access to contact with their consultants via email.  Also, it wold be great to use Skype for non-urgent appointments in all surgeries across the UK.  Technology is quickly becoming a major feature within all aspects of everyday life so why not implement new technologies such as Skype, tablet computers within healthcare?

images-2

The third change I would make within the healthcare system is the proposal to the end of the ‘postcode lottery’ that exists within the NHS.  The ‘postcode lottery’ refers to the difference in healthcare and treatment depending on where you live in the UK.  In my opinion, this is entirely unfair, imagine that you could receive life-saving treatment or medication if only you lived somewhere else!  The purpose of the National Health Service is to provide a consistent and professional service to each and every person living in the UK, and the ‘postcode lottery’ undermines this very fact.

Those are my proposed changes to the healthcare system in the UK.  If you could make changes within the healthcare system where you live, what would you change?

Loved to hear your thought; feel free to comment below!

by
Keep Reading
In Chronic Illness

Illness Forces You to Grow Up Fast and Ditch those Training Wheels

No Comments

nhbpm_daycount-04

 

Welcome to the fourth post in 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 upon given prompts provided by WEGO Health.

Today’s prompt reads:

Training Wheels.  Write about a time your health condition forced you to grow up and take the training wheels off (so to speak)

As a person who has lived with a chronic health condition since childhood; I know exactly how  living with a chronic illness forces you to grow up far quickly than we are ready.   Instead of playing out with friends, it can force you being stuck inside feeling unwell, or in my case dizzy beyond belief.  Fun parties and sleepovers are replaced by endless doctors and hospital appointments in the quest of searching for a diagnosis to explain the symptoms that are unusual in childhood.  However, there are positives to living with illness from such a young age – for example, you become much more compassionate towards others , less judgemental and more understanding of people with other illnesses and disabilities.

Tests, injections and medicines become a way of life and eventually the training wheels are forced to come off and we are forced to grow up.

 

images

 

After living with illness for so long it is hard to pinpoint one situation that my personal training wheels were forced off.  In fact it is not just one situation that forces you to grow up, but it is a continuous process.  Illness forces you to acknowledge your limitations and to accept your life as it now is.  That is often the way you can move forward with your life and grow up and throw those training wheels out once and for all.

An example of this, was my stubbornness and reluctance to use my wheelchair; not only because I was ashamed or worried about what others would think of me using the wheelchair but also because I know how bad the dizziness can still be even when sitting down.  But after a lot of falls suffered when out, I finally had to accept and realise that the weakness in my legs would not get any better and that there was now a great need for me to start using the chair on a much more regular basis.  After I accepted this I grew up some more and started using the wheelchair, threw those training wheels off and started enjoying trips out in the wheelchair more than I ever thought I could!

To read more about the acceptance of needing a wheelchair, you can read a past blog post about just this topic: ‘Becoming Visible in an Invisible World‘

by
Keep Reading
In Chronic Illness

My condition sends me in a spin!

No Comments

nhbpm_daycount-03

 

Welcome again to the third post for the National Health Blog Post Month 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:

My Mascot! Give your condition, community or self a mascot.  Who is it?  What do they represent?  What is their battle cry?

To represent my condition in the form of a mascot, I have chosen to represent it using an inanimate object instead of a person or animal.   I have decided that the mascot for my condition will be a spinning top.

imgres

The world due to my condition is constantly moving ; and very regularly the dizziness becomes severe vertigo sending my whole world in a spin.  The room spins so fast, just like the spinning top.  A perfect representation of how my condition affects me everyday.

However, it is not only the dizziness and vertigo that affects; as regular readers of my blog would know that the condition also causes weakness in my legs which often results in my legs giving way from under me.   The spinning top also can represent this part of my condition as the spinning top falls after it stops spinning;  Falls, like those that happens to a spinning top after it stops spinning is a constant part of my life; my legs will suddenly collapse from under me, causing a fall to the floor!

Now, there is much more to my condition such as the fatigue that I constantly experience, or the visual disturbances but just like any mascot that I could have chosen could not have represented every facet of my life with this condition but I wanted something to represent the symptoms which  I consider to be the biggest challenges that I face daily due to the condition which I live with.

If you could represent your condition with a mascot, what would you choose?  Let me know your thoughts!  Feel free to comment below…

by
Keep Reading
In Chronic Illness

“I think I can” and “I know I can” – Life with Illness causes doubts and a battle to remain positive

No Comments

nhbpm_daycount-02

Welcome to the second day of the National Health Blog Post Month 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:

Little Engine Post: Write 3 lines that start with “I think I can…” and then write 3 lines that start with “I know I can…”

Living with a chronic illness is not a life choice but instead becomes a lifestyle; high heels and a little black dress is replaced with a comfortable pair of slippers and a pyjamas.  Not only does it become a lifestyle but also changes the way you not only see yourself but also the way you view the world.  It affects self-confidence, and once in areas of your life you were entirely confident in, now fills you with self-doubt.  So, sentences which started with “I can…” can sometimes turn into “I think I can…” or sadly sometimes “I can’t…”.

imgres-3

 

I think I can remain positive despite chronic illness.  Yes, this is still one thing that I know I can do yet.  Living with illness is like riding a rollercoaster; there are plenty of ups and downs.  One day you are able to remain upbeat and positive despite all the things that we have to live with but the next day that upbeat and positive attitude disintegrates into a puddle of depression and low self-worth.

I think I can cope with the dizziness.  But sadly the dizziness is starting to get the better of me and my coping strategies that once worked so well is now not doing its job and is making me miserable as well as leaving me in tears nearly everyday.  Everyday feels like an upbeat battle; feeling like a war instead of simply being able to enjoy the day and all the positive things that happen.

I think I can write a list of all the things I like about myself.  It sounds like an easy question, right?  However, during all the times I have been asked to do this exercise, I have had a lot of trouble to write the list of everything I like about myself;  however give me a list of all the things that I don’t like about myself and I can write quite the list!

But what about what I know I can do?

imgres-2

 

Well, I know that I can push myself with a successful outcome.  This week I found out exactly this.  I have missed several weeks of the weekly group that I attend because of illness and particularly the dizziness that I have been struggling with, however this week saw the annual Halloween Party and wanted to attend despite the severe dizziness.  On the day I really wasn’t feeling well and the dizziness was still very bad so really had to push myself; and I did and I managed to not only stay there but actually enjoy myself!  Even celebrating a win at Bingo as well!

I know I can use and stay in the wheelchair.  This used to be big problem for me because of the dizziness in which I live.  A concern of mine was that although I really need one due to the weakness and severe trembling in my legs I would never get used to it, and be able to stay in one for very long, despite the real need for it.  However, not only have I been using the wheelchair for sometime now but can also stay in the chair for some hours despite the dizziness.  I now am going to more places and able to stay out for longer.

I know I can rely and gain a lot of support from a wide network of friends.  Twitter has been a real lifeline for me, as I have met a lot of wonderful people and make a number of lifelong friendships along the way.  The support I receive from others when I am going through a bad time is truly overwhelming and I am thankful for each and every one of my new friends.

by
Keep Reading
Pin It