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Chronic Illness

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As most of you know, each Wednesday, I attend a group called ‘Life 4 Living Pontypridd.’  The group is a social one, which promotes positivity and friendship among its members.   The focus of the group is to promote people’s strengths and enjoy life despite one’s own personal circumstances.  One such way, to promote a positive outlook, we have been asked to devise a ‘Bucket List’ – a wish-list that one would like to achieve before they ‘kick the bucket’, or in other words die!

 

 

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It is thought that the phrase derives from the Middle Ages, when execution by hanging, consisted of a noose being tied around the neck whole standing on an overturned bucket.  When the said bucket was kicked away, the victim would hang until dead, hence the phrase “kicking the bucket”.  The term has recently been popularised, by a film starring Morgan Freeman and Jack Nicholson, of the same name, about two terminally ill men meeting at a hospital, and devises a wish-list of to-do’s before dying, which they attempt to complete together on a road trip.

 

 

The film 'The Bucket List' has popularised the idea of creating such lists of things to do before you die!
The film ‘The Bucket List’ has popularised the idea of creating such lists of things to do before you die!

 

 

Initially, the idea of a such a list sounds morbid and depressing; seems to be planning the end of your life, instead of living life whilst we still have it.  It suggests a “check-off the boxes” approach to life; sitting round waiting to die.   However, isn’t the phrase more to do with living than dying?  Wouldn’t completing items on such a list make life more meaningful and memorable.  Those memories, are not only positive and meaningful for the terminally ill person, but will also live on after they have gone, by those left behind who were also part of the experience.

Now, the condition with which I live, is obviously is not terminal, and more than likely be around for many more years to come.  In this case, the phrase ‘Bucket List’ is misleading.  How many of you, have such wish-lists?  Would your imminent death, really the main motivational factor in creating one?  The majority of people, I am sure would say no.  Perhaps, it is important, however, for people with chronic illnesses to create such lists in order to accomplish personal ambitions, before the illness prevents them from doing so.  Perhaps, by creating such lists, would provide those with chronic illness with experiences that they can look forward to, whilst they are dealing with horrible, debilitating symptoms, and through treatments that can feel worse than the condition itself.  Whilst studying Psychology at University, I learnt about the importance of goal-setting.  Such goals can motivate us to accomplish items on such wish-lists; and furthermore the most motivating goals are those which are hard and specific, although it does need to be coupled with steps to achieving said goal, but writing a ‘bucket-list’ is the critical first-step.

One of the things, that is on my personal ‘bucket list’ is to someday visit Italy, and I am pleased to say, that my parents and I have booked a cruise for next year and one of the countries we will be visiting is Italy!!  Of course, there is much trepidation on my part surrounding the trip, especially giving the deterioration in my symptoms.  However, it has also given me something to look forward to in the future; even on the days where I have been confined to my bed due to uncooperative legs, it has given me something to smile about and aim for.  It has given me something to think about other than illness, and hospital appointments.

It has really put a pep in my step!

 

 

 

What would you add to your Bucket List?
What would you add to your Bucket List?

 

 

What are your thoughts regarding ‘bucket-lists’?  Are you for or against?  What would you put on your bucket-list?  As ever, I would love to hear your thoughts, so feel free to comment below!

Well, have finally received my appointment to see a neurological consultant – all set for August 20th!!  After a long 28 weeks the appointment has come through, and all set for another hospital appointment.

 

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Hospital appointment finally!

 

It’s funny though isn’t it when symptoms associated with your chronic illness, such as pain, dizziness, headaches, and so on are getting worse; becoming so troublesome that there is nothing to do but to visit the doctor, and get the referral to see a consultant.  Meanwhile, the symptoms are still becoming worse, and you are hoping for that hospital appointment to come through because of the suffering; which by now is probably not only starting to affect your physical health but also your mental health, such as increased anxiety (for example, worrying about your symptoms) and depression

 

Then, that envelope finally drops on the door mat – for a second, there is a feeling of relief; a relief that the wait is almost over, and that you may finally get answers regarding the deterioration of symptoms.  However, that sense of relief is overtaken by one of dread, and anxiety.  Dread because of the unknown – you are unsure of what the appointment will entail, not knowing what the examination will entail.  Then there is the anxiety about what information will be gathered from the appointment and examination, and the final results.  What will the tests find?  Is it bad?  Will my condition get worse in time?  Those are some of the questions that you will inevitably ponder before a hospital appointment.

 

The sinking feeling in the stomach as that letter arrives with the hospital's logo!!
The sinking feeling in the stomach as that letter arrives with the hospital’s logo!!

 

 

Then there is all the preparation prior to the appointment, such as compiling a list of questions that you want to ask the consultant.  Completing a form with some pre-appointment questions that the consultant sent to fill out.  Filling out a journal regarding the symptoms such as frequency, length and so on.

But for now I just have to wait for that important date with some relief and a little trepidation…

 

 

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!

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