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Chronic Illness

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I was reading the Weekly Writing Challenge over at WordPress ‘The Daily Post’ and I loved the idea of writing a recipe to describe someone and thought maybe I could use this prompt to write a recipe to describe the life of a chronically ill patient!  So here it goes:

 

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Recipe for a Chronically Ill Person

Main Dish:

4 cups of pain

2 tablespoons of dizziness

3 cups of fatigue

1 teaspoon of depression

2 afternoon naps

8 oz. of determination and strength

Pinch of wobbly legs

2 oz of awesomeness

1 comfortable bed

All the spoons you can find!!

 

 

To Garnish (optional): 

1 wheelchair

6 falls

1 awesome carer

1 pet to comfort you during times of sadness and misery

 

Instructions:

Mix all the ingredients well in a very large bowl with a wooden spoon.  Stir well.  When everything is combined; pour into a dish and place in the fridge overnight.  If desired, add the garnish and serve!

 

 

 

 

So, if you were to write a recipe for a chronically ill person, what ingredients would you suggest for it?  Let me know your thoughts and comment below!

 

Sorry that I haven’t posted anything in a while, but with the increase in severity of my symptoms, particularly the fatigue which has been ravaging my body and attempting to survive during the heat wave (the Summer months, specifically the very warm weather can be particularly difficult for people with neurological conditions – for more information visit the Brain and Spine Foundation’s website).

The hot weather (and a slight case of anaemia) have wreaked havoc on my symptoms; they have increased in number as well as being more severe.  At night, it has been particularly bad due to the humidity, leaving me unable to sleep.  This cycle of being too warm and not sleeping, leads to an increase in the fatigue.  But like many neurological conditions, symptoms don’t come on alone.  Just like the supermarket offers, if you get one symptom then you also get 4 symptoms for free!  So, as well as the fatigue, there is also the intense dizziness and vertigo, nerve pain causing severe tingling, and also the weakness in the legs, resulting in an increase in falls as they collapse from underneath me.

 

 

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Again, as have happened before, the weakness in my legs is becoming more severe, and both myself and my carer (or personal assistant) have noticed an increase in stumbles and collapses as we have ventured out.  For example.we were shopping at a local clothing store, and after paying for my goods at the till, my legs suddenly collapsed, and I landed in a heap on the floor of the store!  Cue a red face!  The staff at the store, however were fantastic and provided us with a stool for me to sit on whilst I regained the strength I needed to be able to stand back up and continue walking.  Another collapse then happened at the swimming pool, after a session in the pool itself, my legs suddenly collapsed, and was left unable to stand for a while after, and needed help from both my carer and the lifeguard on duty – the centre provided me with a moveable chair to help me get to the shower and changing rooms.

 

 

Falls - downstairs, upstairs, they all happen to me!
Falls – downstairs, upstairs, they all happen to me!

 

 

However, all these falls has made me revisit the idea of the wheelchair.  Is this a sign from my body that I should now use the wheelchair?  For me this is not an easy decision to come to, as although the wheelchair would be very beneficial for me due to the weakness in my legs, and would obviously lessen the likelihood of any injuries from falls, it however isn’t so good for the dizziness that I experience, as the motion from being in the chair makes me even more dizzy and nauseous.  It’s a catch-22 situation!  Although, on the same day as the fall at the swimming pool, as we visited a garden centre for a light refreshment afterwards, we did borrow a wheelchair and although I was extremely dizzy whilst sitting and being pushed around in it, I did manage to stay in there for the entire time we were at the centre.  At least there is some progress, right?

 

 

Iced lemonade - perfect for the hot Summer weather!
Iced lemonade – perfect for the hot Summer weather!

 

 

I have tried everything to keep cool – using a fan, light clothing, drinking more fluids during the day, eating ice lollies, and so on, but still I am struggling through this heat wave and the symptoms are still not subsiding.  I have even need to wear a  hat indoors to try and block everything out in order to combat the dizziness.  Uggh!  And if the weather reports are to be believed, then it looks like The Style Council were right, it is going to be a ‘long hot summer’…

 

Welcome to the fifth and final installment in the ‘A to Z of Chronic Illness’ series of posts.  A series of posts to use the letters of the alphabets and find words to describe what it is like to live with a chronic illness.  Today is the last post which covers the letters U through to Z.

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.

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U is for…

UNPREDICTABLE

Yes, an excellent word to describe what living with a chronic illness is like.  It is certainly very unpredictable to live with a chronic illness.  You never know when symptoms are going to kick in; what days you are going to be unwell.  One minute, you can be feeling well, and the next minute, the symptoms hit you, and it’s like being in the crutches of the particular health condition in which you live.  No days are the same; one day, one symptom such as the dizziness can be bothering you, and the next day it can disappear, only to be replaced by another symptom.  In addition, many chronic illnesses are also unpredictable, as often the course and progression of the health condition is unknown and unpredictable – it is not known what symptoms the patient will or will not develop; how quickly the condition will progress; or even, how severe the condition will affect the patient.  Everything about living with a chronic illness is unpredictable.

 

 

 

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V is for…

VERTIGO

Another hard letter to find a word that describes life with chronic illness.  Vertigo may not be a word that fits in with most chronic illnesses, but it certainly is an accurate word that describes my life with chronic illness. Vertigo is a subtype of the more common symptom of dizziness in which people inappropriately experience the perception of motion; such as a spinning sensation.  It is extremely unpleasant, and very difficult to live with, especially on a daily basis.  Vertigo is also associated with nausea and vomiting, as well as problems with balance; often resulting in difficulties with standing or walking.

 

 

 

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W is for…

WEAKNESS

There were a few possibilities for W; such as walking or war, but I thought I would choose weakness instead.  Due to chronic illness, most patients often feel feeling very weak, as their bodies are crippling under the effects of the symptoms that their health condition can cause.  Patients often feel so weak that everything is extremely difficult; taking up all of our energy until we have run out of ‘spoons’ (see ‘Spoonie’ for an explanation).  Certain part of our bodies may also show weakness, for example, I suffer with what is known as ‘spastic paraparesis’, which is severe stiffness and weakness of the legs.  It is because of this weakness that I am unable to stand for more than ten minutes, as they often give way with no warning.  Weakness can be seen as a loss of strength and control of movement in the arms, legs or whatever part of the body that is affected by the chronic illness.

 

 

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X is for…

XEROSTOMIA

This letter was a massive challenge!  Especially as there are a limited number of words that start with the letter ‘x’ to begin with!  Xerostomia is the medical term for a dry mouth.  And how does this word tie in with chromic illness, you ask?  Well, a dry mouth can be a symptom of systemic diseases such as Sjogren’s syndrome, systemic lupus erythematosus, scleroderma to name but a few.  However, a dry mouth can also be a side effect of a number of different medications.  It is certainly a side effect that I have to deal with, and has resulted in me always carrying some minutes of chewing gum to help combat this

 

 

 

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Y is for

YO-YO

Just as I have mentioned previously that chronic illness is extremely unpredictable, it is also a lot like a yo-yo.  There are many ups and downs whilst living with chronic illness; there are good days and bad days; there are days where you feel well and those where you feel extremely unwell.  The ups and downs, of course, do not only apply to the physical aspects of illness, but can also describe the psychological side of illness.  There are days that I am sure everyone feels depressed, and wallowing in misery because of the effects that the illness is impacting on their lives.  But there are also the days that are good emotionally, where we feel positive, and that we could take on the world!

 

 

 

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Z is for…

ZEBRA

I really could not think of any other word for the letter ‘z’!  Consider this famous quote:

“When you hear hoofbeats, think horses not zebras” –
Dr Theodore Woodward

Now zebra is used as the medical slang, and symbol for rare diseases.  Often when a patient becomes unwell and are going through tests to search of a diagnosis, doctors will always consider the more common medical conditions, and rarely think outside the box for an uncommon cause, as of course like horses the majority of chronic illnesses are often commonplace.  However, not all patients will arrive at a simple, commonplace diagnosis, like my diagnosis some are rare and unusual, such as hearing hoofbeats and finding a zebra behind you!

 

THE END!

 

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.

 

 

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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.

 

 

 

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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.

 

 

 

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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.

 

 

 

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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.

 

 

 

 

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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.

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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.

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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.

 

 

 

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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.

 

 

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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.

 

 

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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.

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