Welcome to the fourth part of the ‘A to Z of chronic illness’ series of posts.  Today I will be continuing the series from the letter P through to T  and using the letters to find words that describe what it is like to live with a chronic illness.

If you have any suggestions, or comments on the words that you would use to describe chronic illness, then please feel free to leave a message below.

P is for…

PAINSOMNIA

Although this is strictly not a real world, it is one that is a popular hashtag on Twitter by those suffering from chronic pain, often as a result of chronic illness.  As you probably can determine from the word, it is used to describe insomnia as a result of being in severe pain.  It is a word that a lot of patients experiencing chronic illness can relate to; and one that I often experience.  Many nights I lie awake in bed, because of pain; unable to sleep, which often lasts the entire night, so painsomnia is an excellent word to describe this experience.

Q is for…

QUESTIONS

Living with chronic illness can result in a lot of questions.  Questions to ask doctors such as ‘What are my options in terms of treatments?’, ‘Are there any side effects of the treatment?’ and so on.  Then there are questions that we often ask ourselves after a diagnosis, such as ‘What am I going to do now?’, ‘What if I’m left unable to work, what will I do?’.  Living with chronic illness is not easy, and often patients need to make plans for the future, and make contingency plans in case of different scenarios that could happen as a result of the health condition.

R is for…

RELAPSE

Many people may not realise but living with a chronic illness is not filled with all bad days of pain, sickness and so on, but very often patients can experience periods of good health where they gain relief from their symptoms.  However, relapses can occur, where there is a sudden episode of severe symptoms.  Relapses can last for approximately 24 hours before it subsides, but more commonly relapses can last for longer; sometimes even weeks or months.

S is for…

SPOONIE

I don’t think there can be any other word for the letter ‘S’ than spoonie!  Coined by Christine Miserandino, ‘spoonie’ is a word that describes a person living with a chronic illness or living with chronic pain.  It is a very popular hashtag on Twitter amongst persons living with chronic illness. It is a word that bonds everyone with a chronic illness regardless of the diagnosis; it’s a word that bonds so we no longer feel alone and isolated.  It’s as if the word is now an official club or group in which we feel that we belong; somewhere where we are no longer negatively judged by others; where everyone understands.

T is for…

TRIGGERS

Earlier in this series, I talked about relapses, in which occurs when there is an episode, or reoccurrence of symptoms.  Often, relapses can just occur ‘out of the blue’ however often, replaces can be as a result of a trigger.  Triggers can include things such as an infection, sun exposure, and stress.  Often it is a good idea for patients of chronic illness, to keep a record of possible triggers that may have resulted in a recent relapse, so that they have a reference for the future of what to avoid.  Triggers are not only something that can bring on a relapse, but the condition itself can be triggered by a variety of different factors.

It’s the third part of my series of posts on the A to Z of chronic illness.  Today I will be using the letters K through to O to find words that describe what life is like living with a chronic illness…

Again, your input is always welcome to please feel free to comment on whether you enjoyed the post, and what words or phrases you would come up with.

K is for…

KEEP CALM AND CARRY ON

Everyone knows these posters that were produced during the beginning of the Second World War to increase the morale of the population in the event of a wartime disasters such as mass bombings.  Now the posters have become commercialised and can be found on a variety of different merchandise as well as different versions of the ‘Keep Calm…’ slogan.  However, I feel that this slogan applies well to advice that could be given to newly diagnosed patients, as well as a reminder for all patients to remain positive and to keep going when things are bad.  It is all too easy when symptoms are bad, and we are feeling down to give up, and curl up on the bed, and give up, but it is important, both physically and mentally to carry on regardless in the best way we can.

L is for…

LONELINESS

Life with chronic illness can be incredibly lonely.  Often we are confined to our homes, or even our beds, sometimes on our own.  Even if we are with other people, it can still very lonely and isolating as they may not understand what it is like to live with the illness.  We often feel shut out from the world; pushing us into obscurity as we often are unable to function like everyone else, for example, illness may prevent them from working, going out with friends, going on holiday, and in some cases even leaving the house.  Living with chronic illness, is like living inside our own little bubble; we are able to see everything that is going on around us, but cannot join in, instead being confined in our own little world.  Without the support of others within the chronic illness community via social media then our lives would be very isolated indeed.

M is for…

MOODS

Living constantly with illness, can certainly take its toll on your moods.  You can feel frustration from being unable to go out, or unable to do the basic tasks.  It can also lead to depression from feeling unwell most of the time.  Due to the frustration and other emotions that you may go through can also lead to anger – the anger can be directed inward with the patient blaming themselves for having the illness.  You may feel jealousy or envy of others; seeing them go out on nights out whilst we are stuck in the house, with only our symptoms for company – feeling envy for them doing all the things that we wish we could do but our condition is preventing us from doing so.  Living with a chronic illness does not only affect us physically but can also affect us psychologically.

N is for…

NEUROLOGICAL

This is one word that applies not to all chronic illnesses, but is one that applies to my life and condition.  I have a long-standing brain stem lesion, and is one that is neurological in nature.  There are many other chronic illnesses of course, that is neurological – multiple sclerosis, chiari malformation, myalgic encephalomyelitis (ME), and many more.  Causes of other conditions, however may not be neurological in nature but can cause neurological type symptoms such as dizziness, spasms, poor concentration or memory, headaches, pain and so on.

O is for…

ONLINE SUPPORT

Online support groups; whether this is found on websites related to the particular health condition, on forums or even on social media sites such as Twitter and Facebook can be not lonely a lifeline for those suffering with chronic illness but can also be incredibly helpful to discuss issues relating to the health condition, on treatments and management of symptoms with others who have first hand experience of the condition.  It can also be useful for those who may be housebound due to their conditions and therefore cannot attend local support groups in their area.   It can ease the feelings of loneliness and isolation that can come with living with a chronic illness.  It can also provide hope; whilst we are first diagnosed with a chronic condition, patients often feel that they no longer will have a normal life, however support groups can show patients that not everyday are going to be, and people still lead active and productive lives despite the illness.

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….