Welcome to the second part of my A to Z of living with chronic illness.  Here are the buzzwords for chronic illness from F to J:

F is for…

FATIGUE

Yes, living with chronic illness is tiring.  Often, we have sleepless nights because of pain, or other symptoms which are bothering us whist we try, albeit unsuccessfully to sleep.  It is a complaint that is often reported by patients with chronic illness; suffering from a wide variety of different conditions, which can include fibromyalgia, ME, multiple sclerosis and many more.  Fatigue, however is so much more than feeling tired; the feeling that the majority people experience after a long day at work.  Fatigue associated with chronic illness, can in fact occur after very little activity (happens so often to me!).  Patients with chronic illness, such as myself report feeling just as tired when they wake up in the morning despite having a full night’s sleep.  And symptoms may become worse when fatigue occurs, such as balance problems, walking, or even concentration.  Limbs often feel very heavy as a result of fatigue.  A very common experience of many with chronic illness and so deserves its place in an A to Z of chronic illness, whatever the condition.

G is for…

GADGETS

This letter was tough!  I have decided to use ‘Gadgets’ for letter G in the A to Z of chronic illness, as let’s be honest, where would we be without our gadgets?  Our smartphones, tablets, and laptops provides a patient experiencing chronic illness provides us with a lifeline to the outside world.  From our beds (which we often are) we are able to log onto Facebook, Twitter and other social media sites, and participate in conversations with other people, despite being confined to our bedrooms.  In the nights, whist suffering from insomnia, it can provide us with much needed entertainment by allowing us to watch films or TV programmes thanks to online streaming media such as Netflix.  Thanks to technology and our gadgets we can live more productive lives than we would if they didn’t exist – we can do almost everything online – shop for clothes, food, and other amenities; watch films and TV programmes, gain social interactions with others, as well as being able to purchase music or even a book at the touch of a button.  It allows for escapism from our daily lives with illness and keeps us from being bored and miserable.

H is for…

HOSPITALS

Unfortunately, a life with chronic illness cannot be experienced without endless visits to hospitals. For some, it may seem like a second home, as stays in a hospital is necessary.  However, even for those like myself, who are fortunate that does not require a stay in hospital as an in-patient, it still means regular trips as an out-patient.  Appointments at hospitals are often needed throughout the journey of diagnosis, but even after diagnosis, appointments with a consultant may still be needed for discussion of the particular health condition. Patients with chronic illness may also need treatments such as infusion treatments, physiotherapy and so on which again requires regular hospital visits.

I is for…

INVISIBLE

I feel that this is an important word for the A to Z of chronic illness as not every condition that can be considered a chronic illness is visible to others.  It is said that approximately 96 per cent of people are living with a chronic medical conditions that show no outward signs of their illness, and hence are invisible.  There are many people living with disabling medical conditions such as rheumatoid arthritis, fibromyalgia or multiple sclerosis that you would never know have the condition.  Many stories are reported from people with chronic illnesses on blogs, or on Twitter who are abused by the public for using a disabled parking spot because they do not believe that are in need of such a place as they cannot see that they have an illness or disability that would require such a permit. You can read more about this subject on my past post ‘Don’t judge others for you do not know their story.’

J is for…

JARGON

Living with a chronic illness and spending a lot of time at the Doctors’ and hospital appointments, you will inevitably hear a lot of medical JARGON along the way.  In time, you will pick up a lot of the terminology that applies to your specific medical condition – it is like learning a new language.  Given time, you will speak fluent in this new language and use them in everyday conversations with other patients.

I have decided to start a new series of posts about living with a chronic illness by using the alphabet!  Would love for suggestions or your ideas of what words that you associate with illness; words that you would choose to represent a letter of the alphabet.  So here it goes…

A is for…

ADAPTATION

Yes, living with a chronic illness certainly requires adaptations in our daily life.  This is especially if the condition is one that has started later in life, rather than being born with it.  Those activities or chores that once was so easy for us are perhaps no longer suitable, or proves to be somewhat difficult for us to do, and therefore as a result we have to adapt and find a new way of doing those activities that provides enjoyment in our lives.  For example, completing chores such as washing-up, or ironing for example has become difficult for me because of the severe trembling in my legs; often leaving me unable to stand for long, and so I have to adapt the way in which I used to carry out these chores. Now, instead of standing to do these chores, I use a perching stool so that I am able to still do the chores, but just have to adapt the way in which I do them.

B is for…

BUT YOU DON’T LOOK SICK!

Yes, this is one statement that many of those living with chronic illness has heard; especially taking those conditions which are invisible.  People just find it hard to believe that if you don’t look sick, then the person must be faking their illness, or exaggerating over the effects that the illness has on their everyday life.  But as we all know, not all pain, wounds or even symptoms of illness can be seen.  Many remain hidden, keeping all of its secrets buried beneath the surface of our bodies.  That is why I support the National Invisible Illness Awareness Week, usually held every September as it’s an excellent opportunity to make others aware of invisible conditions and disabilities so that those living with such conditions or disabilities are no longer stigmatised.

C is for…

CHRONICALLY AWESOME

I love the concept of ‘chronically awesome’ as it’s all about taking illness out of our everyday thinking, and celebrating everything about ourselves that is awesome!  It’s about not letting our illnesses, or disabilities define who we are as individuals but instead celebrate the little things that we are good at – whatever that may be – writing, drawing, and so on.  Being ‘chronically’ awesome isn’t forgetting about illness, or the challenges that they pose, however, instead it is about making the most of our situations and to choose the little gifts that we find in our everyday life.  For example, if it hadn’t been for my condition, then I would not have started this blog, and therefore the opportunities to meet all the wonderful and caring people that I have.  It’s about being positive, and never giving up.  To learn more about being ‘Chronically Awesome’ then you can visit the Chronically Awesome Foundation website.

D is for…

DEALING WITH DISAPPOINTMENT

Inevitably. living with chronic illness, and the debilitating symptoms that they cause, can often leave us unable to go out with friends or family, and have to cancel plans.  This leads to disappointment on both sides – our friends as they were looking forward to seeing us and going out together, and also disappointment for us, the patient too, as it too often seems that living with illness stops us from living life to the full, and cancelling plans is something that if very often too necessary.  Check out a past post that I wrote on the subject after an unsuccessful trip to the cinema entitled ‘Learning to Live with Disappointment with Chronic Illness‘.

E is for…

E-PATIENT

An e-patient is a relatively new phenomenon but it is a term to describe a person who uses the internet to gather information about a particular medical condition, or someone who uses electronic communication tools – such as web forums, social media, etc  in coping with medical conditions.  It is also said that e-patients are empowered, engaged, equipped and enabled.  I am an e-patient, as I use the power of the internet to both gather information regarding my medical condition, and to also use it to help me cope with the condition itself, and gain support from others.  It used to be said that those who use the internet for health purposes were a hypochondriac, seeking out information to self-diagnose, however, there is new evidence to suggest that e-patients are better equipped with the skills to manage their own condition through the medical information they find online, as well as the support that can be gained online, and these patients are also more engaged with their own healthcare, providing better relationships with their physicians, which become more of an equal relationship in making healthcare decisions.

What terms would you use in an A to Z of living with chronic illness?  Send in your suggestions by commenting below!

Will post again very soon for F to J of living with chronic illness….