HAWMC Day 4: The unpredictability of a predictable life…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Saturday 4th April: Creature of Habit 

What good habits (health or otherwise) do you have?  Do you have a routine that you follow every morning?  Are there any bad habits you wish you could break?

As someone living with a chronic illness, my obvious morning routine consists of making sure that I take my daily medication to help manage the symptoms caused by my neurological condition.

Routine is something which is defined as ‘a sequence of actions regularly followed’.  Therefore, a routine follows a predictable pattern.  The only thing predictable about living with a chronic illness, however, is the unpredictable nature of our daily lives.

As a result, being able to maintain a regular routine is extremely difficult as we never know how we are going to feel from one day to the next.  We do not know whether our bodies are going to cooperate on that particular day.  In relation to my own experiences of living with a chronic illness, due to spastic paraparesis, my legs are weak and often there are days that I am unable to get out of bed due to the severity of the weakness.  When these days occur, therefore any routine and habits that I do follow become impractical.

It is not only the physical symptoms that make it difficult to successfully follow a daily routine but other symptoms such as pain, insomnia and fatigue are also obstacles in the ability to maintain a regular routine.  Due to fluctuating pain levels, I often find it difficult to sleep.  As a result, my sleep patterns become disordered and out of kilter; finding myself waking early in the morning one day and sleeping in late the next.  And fatigue is the biggest hurdle in my opinion as very often you feel too exhausted to be able to do anything besides lying down and watching television!

In terms of wishing if there were any bad habits, I would like to break, I suppose I would choose to checking my phone less!  I do check it often, as it often feels that it is my biggest connection to others (through social media) and the world outside my house.

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!

NHBPM Day Two: The Annoyance of Living With a Neurological Condition!

What I have chosen to write about doesn’t really constitute as being ‘weird’ but more of a ‘nuisance.’  What is the nuisance aspect of my health condition?

It would have to be the unpredictable nature of the condition – never knowing when I am next going to become unwell; when the vertigo is going to come on.  One minute I can be feeling quite good (due to the constant dizziness I never feel one hundred per cent) and then BAM out of nowhere it comes on and catches me by surprise.   Life with a neurological condition like mine is really like living on a rollercoaster!

Similarly, with the weakness in my legs, and the problems I experience with them giving way can also be unpredictable and will do so suddenly out of the blue.  On occasions I have gone out, browsing the stores in my local town and then all of a sudden I am on the floor as my legs have collapsed from under me.

As you can imagine this can be a nightmare, especially when making plans with others especially in advance as I can never know how I am going to feel on that particular day; or whether I will become unwell at the event or night out.   And my legs also makes it very difficult to make plans or even to go out as I have no idea when the next time they are going to give way, and as I am often unable to get up after a fall it can make it very awkward and embarrassing if I do suffer one when out, which means that I am only able to go out for short periods of time when I do to decrease the risks of any collapses as standing for too long or over exertion can be a trigger of these attacks.

And there is the suspicion of other people as the randomness of how one minute I feel fine, and the next I am absolutely giddy for no apparent reason confuses them.  It’s easy to assume that the person is faking or exaggerating the symptoms when they seemingly appear out of nowhere; but this isn’t the case, believe me I would much rather feel absolutely normal in my daily life and set out to achieve everything; to live a normal and exciting life – to able to travel, hold down a full-time job, or simply by going out with friends to parties or nightclubs.  However, my conditions stops me from doing these things; and sometimes it’s just a struggle to get up out of bed every morning and to complete the little chores that need to be completed.  I would much rather be living my life rather than by simply existing within it.

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…