Chronic Illness Archives – Page 87 of 89

In Chronic Illness

Invisible and Chronic Illnesses – The Spoon Theory

March 25, 2012 No Comments

After the last post regarding invisible and chronic illnesses, I wanted to share with you all ‘The Spoon Theory’.

The theory was developed by a woman named Christine Miserando, a sufferer of Lupus who whilst at dinner with a friend was asked what it was like living with the chronic condition. The friend, whom was a good one, and knew the medical aspects of the condition, and had seen Christine on her good and bad days. But despite, all that she was unable to understand exactly what it was like to live with a chonic illness day in and day out.

Obviously, it can be very difficult to explain to someone who does not endure the daily pain, fatigue and the endless other problems that people suffering from a chronic illness has to endure. However, surrounded by an endless amount of cutlery, Christine picked up a pile of spoons, which she used to represent the limited amount of energy she has to complete tasks throughout the day.

Breaking down each task into different individual parts, Christine took away a spoon for every task completed, thereby demonstrating to her friend and now others through the ‘Spoon Theory’, that being able to carry out tasks that a healthy person may take for granted as being incredibly easy to carry out and not using any energy, can in fact be incredibly difficult for a person with a chronic illness. And also demonstrated how living with a chronic illness requires having to prioritise tasks that need to be done in order of importance, as I and many others with a chronic condition are not able to carry out every task that may need to be carried out on a particular day due to limited energy.

To read the full story behind the ‘Spoon Theory‘ you can find it here at Christine’s online community for people living with invisible illnesses at butyoudontlooksick.com

So, what do you guys think about the spoon theory? Is it a great way to demonstrate what it is like to live with a chronic illness? What are some of the things that your condition prevents you from being able to do?

Feel free to leave your comments as always…

In Chronic Illness

The Debate of Invisible Illnesses….

March 20, 2012 No Comments

I had an interesting conversation the other day regarding my diagnoses and the problems associated with ‘invisible illnesses’. I remember the days before I received the definitive diagnosis and going from doctor to doctor, desperately trying to find an answer…and reading the body language and expressions, of doctors and of people I knew who clearly thought I was making up my symptoms and the problem instead “was all in my head.”

I am sure many of you reading this out there can relate to that, and unfortunately it is often the case that as soon as you are labelled by doctors as being a ‘hypochondriac’ or the problem caused by a psychiatric problem, it is extremely difficult to get them to take you seriously or even to look beyond that train of thought. I know it is often the case for people living ‘Chronic Fatigue Syndrome’ (ME) to find a doctor willing to listen and to take their problems seriously, especially as there is still a lot of debate whether the condition even exists which must be so frustrating.

That is the problem with today’s society – just because a person does not look sick then they cannot possibly be ‘sick’ – whatever happened to the proverb “just because you cannot see something, it doesn’t mean it’s not there”.

Then we came to the discussion about whether my illness can be still considered invisible – considering, that when I am out and about I use a crutch and hanging onto one of my parents to stop me from falling. Recently, I took a taxi, the driver of which I have not seen for some time, and he asked me what I had done to my leg. Even, with the crutch, people may assume I may have hurt my leg in some way, and may not be permanent. And even when I do use my crutch, I do get the occasional stares, as if they are questioning why I need to use one. As my legs are very stiff at times, it obviously makes walking difficult and often walk with some limp, or often will stumble or fall due to many different reasons – weakness in the legs, dizziness and my problems with balance.

Therefore, can be illness can still be described as being ‘invisible’ taking into account the crutch, and the other problems that I experience?

Please feel free to comment below on the post and any comments, share your experiences and what you feel about regarding ‘invisible illnesses’….

In Chronic Illness

I’m taking part in this year’s Health Activist Writer’s Month Challenge!

March 14, 2012 No Comments

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health.

I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around.

Looking forward to writing with you!

In Chronic Illness

It’s Brain Awareness Week!!

March 13, 2012 No Comments

Hey Everyone

Just found out myself that this week (12-18th March 2012) is ‘Brain Awareness Week’, an initiative to increase public awareness of the progress and benefits of brain research. For people, like myself who are living with some type of neurological condition, are aware of the different parts of the brain and the function for which they are responsible for, and what can go wrong as a consequence of injury or disease to that particular part of the brain.

For example in my case, the part of the brain stem that has been injured is responsible for co-ordination and balance leading to dizziness and vertigo, as well as suffering falls, and there is some sort of degeneration in the upper motor neurons in the brain leading to the spasticity and weakness of certain muscles.

If you are not familiar with the brain and the different functions, the ‘Brain and Spine Foundation’ a UK based charity has some excellent resources about the brain and brain injury.

http://www.brainandspine.org.uk/whats_new/news/my_brain_and_me.html

And to find out more about ‘Brain Awareness Week’, you can find out more at the Dana Foundation Website:

http://www.dana.org/brainweek/

There may be even events near you, I know there are events from the Cardiff University near to me, with some excellent programmes about the Brain and Neuroscience – would love to attend but given my current state, it is just not an option but never say never, maybe next year!!

In Chronic Illness

Exercising: When it is it too much? And Upcoming Celebration

March 11, 2012 No Comments

Hey Everyone

So, have been really good lately, and have gone on the new AeroPilates Machine nearly everyday – the minor day missed because I have been too unwell or have had other things going on so didn’t manage to ‘fit’ it in during my day.

It has mostly been going well, think have gotten to grips with most of the exercises which were difficult to start off with – and boy, can you feel it working!! However, I have found myself feeling extremely tired afterwards and with my legs feeling extremely weak, sometimes not even been able to get back up straight away afterwards. During a particular exercise, you are required to put your legs in these straps and to raise the legs 90° in the air, on doing this however I am finding that my legs jerks and shakes, similar to what happens when the doctors are checking my reflexes, it used to just happen with my left leg as it seems to be weaker but has just started happening with my right leg too, and have started seening it happening with my arms when doing some of the arm exercises.

Does this mean that my legs are starting to become weaker and my arms are beginning to become weak also?? Just great!! Now my Mum is telling me constantly not to overdo it on the AeroPilates but whilst I am on there I don’t feel particularly tired, so how am I supposed to tell when enough is enough?? To demonstrate how the AeroPilates machine works here is a video from YouTube with some of the exercises that can be done on the machine:

On a happier note, this week I will be celebrating my 26th Birthday – and whilst it is supposed to be a lovely celebration surrounded by friends, going out perhaps to a local nightclub or bar, I however will find myself alone for some of the day whilst Mum and Dad are at work. Having this kind of ‘disability’ I am finding it a struggle to find someway of celebrating, given my condition and how it affects me especially considering how it often leaves me feeling fatigued, extremely dizzy and with legs so weak I am unable to walk or stand for very long. I have however been invited to a local Resource Centre where I volunteer to celebrate my day – although it will mean having to get a taxi from my house to the centre and back again.

Yet, another disadvantage of having such a disability – having to really think things through before going somewhere and planning the journey and all that comes with it instead of being able to just go out and do.