Chronic Illness can ruin plans and routines…

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Welcome to the eleventh day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Veteran’s Day: For all our veterans and family members, we celebrate this day because it marks the end of WWI, at the 11th hour on the 11th day of the 11th month.  Do you have a task you complete every day at the same time that helps with your chronic illness?  How long have you been doing this, how has it helped?

I cannot say that I complete a task every day, at the same time which helps with my chronic illness.  In my personal experience, no two days are exactly the same when living with a chronic illness.  In addition, life with a chronic illness can instantly change within a blink of an eye; one minute the symptoms are in the background, calm…and the next minute they are wreaking havoc amongst your body and impacting upon your life and your routines.  For example, very often the neurological condition that I live with causes such severe weakness in the legs and intense dizziness that I am unable to get out of bed, and even if I did have task that I complete every day at the same time, I could not very well leave my bed to complete the task.

 

Keeping to a routine can be very difficult when living with a chronic illness
Keeping to a routine can be very difficult when living with a chronic illness

 

Making plans, whilst living with a chronic illness can also prove be very difficult as because every day is so very different, we can never tell how we will feel on that particular day.  Do we dare to book tickets for a concert or play just in case we are unable to attend?  We are ruled by our bodies and as a result we are governed by our conditions and its symptoms; dizziness, pain, weakness or overwhelming fatigue may result in a person with a chronic illness to cancel plans, or cease our routines to rest and recuperate.

 

Cancelling plans can be as disappointing to us as it is for our friends and family...
Cancelling plans can be as disappointing to us as it is for our friends and family…

 

Recently, I have even been finding that the coping strategies that I do have in place regarding the dizziness, can work one day but as the intensity of the dizziness may be worse the next, these coping strategies are not proving to be effective.  So, to conclude, living with chronic illness can vary from day-to-day; and even from hour to hour or in certain cases from minute to minute, and although we all would like little tasks and routines to complete every day to make us feel better, our illnesses can prevent us from completing them, ruining all of our plans and routines.  Certainly, life with chronic illness is never the same from day-to-day….

 

At the end of this post, as it is Remembrance Day, I would like the opportunity to pay tribute to every member of the armed forces, past and present;  all of their hard work and sacrifices that they make in serving our country and allowing us the freedom that we are so fortunate to have today.  You are all heroes and we will remember all those from all the wars that were not so fortunate to return home to loved ones.  I certainly will be wearing my poppy with pride today…

 

Wearing my Poppy with pride today! #lestweforget
Wearing my Poppy with pride today! #lestweforget

 

As always would love to hear your thoughts and views!  Do you have any strict routines you adhere to when dealing with chronic illness?  Does it help?  Please leave comments below!

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An A to Z of chronic illness: Part 5

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!

Unsure of the Path I’m On…

Hey Friends

Me again, for another post to my blog.  Hope all of you are OK.  I have to admit, lately I am struggling – feeling down, alone, sometimes I feel as if I have no friends or no-one that I can turn to – although absolutely no idea as to why I have been feeling like this…

May be down to the deterioration of my condition – the dizziness, which has been constant for some time now, seems to have become more intense, as well as the episodes of vertigo becoming much more frequent, and are often times are worse to deal with than the constant dizziness, especially when you take into account the visual disturbances – vision becoming foggy or blurry and unable to focus on anything, sometimes not even being able to recognise what I am looking at.

As well as that, my legs seem to be gradually becoming worse too – experiencing many ‘drop attacks’ in which my legs suddenly give way from under me, with no warning.  That is the one of the hardest things to deal with also – the unpredictability of it all – going out perhaps, not knowing whether my legs will collapse, and when you take into account that often I find myself often unable to get up after these ‘attacks’ making plans to go anywhere becomes very difficult.

Take one example: on a Monday, I volunteer for a local Mental Health charity, which I have done for a couple of years now.  So, on my way, my Dad takes me to a local supermarket to go and buy some lunch, and last Monday was no exception.  However, whilst  buying my lunch, my legs gave way, and like on several occasions found difficulty in being able to get back on my feet again as my legs were so weak, and felt as if they were trembling a lot, so consequently  my Dad had to take me back to the car and buy lunch for me.  Legs never really recovered after that, so felt as if I wasn’t much use at the Centre, but often is nice just to get out of the house for a few hours.

Later on, had another appointment with the doctor.  Basically, told him of all the difficulties I have been having, the seemingly progression and deterioration of the condition, etc.  And once again was told “unfortunately, with conditions like these it isn’t much that we can do, and  no drugs are going to help with the weakness…”, basically another way of saying “There isn’t anything we can do, you just have to live with it.”  Mum even asked whether there was any possibility that I may need to use a wheelchair in the future, and the doctor just nodded his head in agreement, that may be my future…  I was shocked and a little upset, as I honestly never really thought that I may need one, people have said that maybe I should, but never really thought that I may need to actually us one, more so for going out, as still need to use the muscles so they don’t atrophy.  But if I need one, then so be it, as there are worse things in life, hey?

I have been often told that I need to exercise and make use of the muscles as often and as much as I can, however, as I am unable to stand for very long, it makes finding any forms of exercise that I am able to do very difficult, my legs and problems with balance and co-ordination, etc. My exercise bike has been increasingly difficult to use as often feel that I am going to fall off, and the Wii Fit that we have does not often recognise me during some of the games as when you are required to stand still, my body is swaying back and forth…

However, I have recently bought a machine that hopefully may increase the strength in legs (although isn’t  guaranteed that it will work) and also keep me fit and in shape.  It is called an Aeropilates Machine  –  a machine that incorporates pilates exercises with a resistance machine….

AeroPilates 4695 4 Corded Machine and Cardio Board
AeroPilates 4695 4 Corded Machine and Cardio Board

“Pilates was invented by Joseph Pilates in the 1920s as a way of incorporating a full body workout to build muscle and core strength. Over time pilates has come to be the preferred means of exercise for a wide range of people from athletes and dancers to those with common household injuries like injured backs. It’s benefits are wide-reaching and provide not only fitness and toning, but also help with injuries that you might have. An aero pilates machine apply the basic principles and effectively ‘super charge’ your workout so that you reap the rewards of pilates with an aerobic workout that aids with blood flow and muscle growth.”

Anyway, I’ll be off now, doing some exercises on my new AeroPilates machine – fingers crossed that I will see some benefits soon…