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In Chronic Illness

HAWMC Day 1: Health Time Capsule

April 1, 2012 No Comments

Well folks, April is finally here – the sun is shining and flowers are blooming, Spring is definitely in the air – and of course begins the Health Activist Writer’s Month Challenge courtesy of WEGO Health. A challenge in which I have to write a post for every day in April – being provided with prompts that I have to write about.

Today’s prompt says the following:

Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it.

Okay, so first thing, according to Wikipedia, a time capsule is defined as:

“…a historic cache of goods or information, usually intended as a method of communication with future people…”

Sounds easy, right? However, I have had some difficulty – as my condition is not common and seems to be rare, especially as I have come across very little information regarding it and have not found anyone else living with the same condition as me. Although I take several different medications, none of which really treat my condition or its symptoms, they merely ease the severity of the symptoms.

So, to start I have decided to place a letter intended for whoever happens to find the capsule – a letter introducing myself, about my life, hobbies, interests, and of course, about my condition – the medical jargon, the symptoms and how it affects me and my daily life. Perhaps, also including transcripts of my blog posts to gain extra insight into my condition. My journal would also be a great tool to learn more about me and my condition, one which fully dictates everything I go through day in and day out, as well as thoughts and feelings, pretty much everything about me!!

Also, have included two letters – a referral letter and the other the first appointment to see a hospital consultant. You may be wondering why, but I think it would be interesting as part of social history to compare the waiting lists from the past and the present. What would the people living 2112 think of our waiting times to see a consultant? Would they be shocked at how long they are? This is also of some interest for people living in the UK considering the recent discussions into the reforms of the NHS. Whether the reforms will make any difference to the length of waiting times remains to be seen.

I have also included a visual aid to represent one of the main symptoms that I experience – dizziness. And I have represented the dizziness by placing a spinning top into the time capsule.

Perhaps when the person who opens the time capsule will get dizzy when looking at the toy spin round and round. Maybe then they will be able to appreciate what it is like to live with it 24/7 like myself.

I have placed my degree certificate and transcripts in there – to show that even when living with an invisible and life long condition, it does not have to stop you from achieving something great.

My crutch is something else that is going in. A mobility aid that helps me in my daily life, as my legs are weak and have trouble with balance, it helps (or at least tries to!) maintain my balance and so I don’t fall!!

Another problematic symptom that I experience is due to the spastic paraparesis, causing stiffness, heaviness and tingling sensations in my legs, and of course weakness which often leads to my legs giving way on me. However, this is obviously a symptom which nobody can see, so it lead me to ask how I would represent this in my tine capsule? Then I remembered, a nickname that I was given a while ago – Bambi!! Yes, I have been given a nickname based on the Disney who at the beginning on the film is unable to stand on his legs, falling over as he tries to – not unlike me when my legs are weak and they collapse from under me. So I have placed a cute cuddly toy of Bambi to represent the spastic paraparesis.

And I have also included a butterfly – something that I love to represent me. Love the symbolism of them – that they are free beings, able to go here and there, something that I wish I could do. And of course, they start off as something else and transform into something beautiful. Perhaps, that is what happens when we become ill – that we transform into a better version of ourselves.

So, that is my time capsule!! I think that when someone in 2112 will open this, they will probably be very baffled!! Although, for many years I think I have baffled many doctors as getting a final diagnosis was quite a battle.

Where would I hide the time capsule? Well, it would probably hide it in the vast field near my house – it would be nice that somebody who in the future who’s living in the street where I am now would find it. Can’t imagine that it would end up in a museum or anything, but even if it’s just to educate someone about the complexities of the brain, and the problems associated with neurological conditions, and those conditions which cannot be seen.

Hope you have enjoyed the first post and would love to hear any responses and thoughts you may have, don’t hesitate to comment.

What would you place in your time capsule??

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!!