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In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’.  In the book, she introduced the now famous ‘Five Stages of Grief’.  Her theory suggested that there are five stages of adjustment after a loss, which are:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

The theory described the five stages of grief concerning the mourning of a loved one.  However, these five stages have also been used to describe many areas that involve a loss.

These five stages of grief can also apply to a diagnosis of a chronic illness or the onset of a progressive disability.  Mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis. And for the activities that we once enjoyed but which may be prevented by the symptoms of the chronic illness or disability.

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The 5 Stages of Grief
The 5 Stages of Grief

An example of these stages in action can be as follows:

Denial 

We immediately are in denial of the new situation and cannot accept that it is true.  Regarding chronic illness, we may question the doctor and ask whether he is confident that the diagnosis is correct.  A request may be made for further investigations as we cannot accept the diagnosis as fact.  We may also not be open to new medications or treatments suggested as that would mean the condition is real.

Anger

Like many others, anger is a normal feeling when living with chronic illness.  We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. We are often angry at people around us who are still able to do all the things that we are no longer able to do.  Anger is one of the five stages that those living with chronic illness reverts to, especially when symptoms are particularly severe.

[Tweet “Anger is a stage those living with chronic illness reverts to, especially when symptoms are severe.”]

Bargaining 

Although anger stays for a while, we eventually progress to the third stage which is bargaining.  Often, when living with a chronic illness, we become lost in a world of “What if” and “If Only” statements.  We want to return to the life we had before illness, so we attempt to bargain with our bodies.

We promise that we will take all our medications correctly, and keep to a healthy diet in exchange for the condition to disappear.  A promise is made to do anything in exchange for a cure and to be able to return to a normal life.

[Tweet “When living with a chronic illness we become lost in a world of “What If” and “If Only” statements.”]

Depression 

As times passes; we slowly realise that bargaining isn’t working.  As there is no sign of a cure or a return to our old life we begin to lose hope.  Often, we slide into a depression.  The depression isn’t a sign of a mental illness however but a response to the loss of our previous life.  We turn inward and withdraw from life, and get stuck in a fog of sadness, despair and hopelessness.

[Tweet “As there is no sign of a cure or a return to our old life we can slide into depression.”]

Acceptance 

The move into acceptance is a slow and gradual process.  To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.

However, this is not a single process.  These five stages of grief are linear and one in which we often regress to previous steps.  The need to work through them all over again, especially at times when the condition gets worse.  As we worsen we return to the first stage of denial and we need to work through all the stages just like we did after the initial diagnosis.  As our health deteriorates, we are essentially mourning the loss of another piece of ourselves.

[Tweet “Acceptance is about finally recognising and acknowledging the permanence of chronic illness.”]

The importance of acceptance can be brilliantly summed up by a famous quote by Joseph Campbell:

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This post is about acceptance – to acknowledge the changes in our situation and declining health.  It is not about being completely fine or deliriously happy about the illness or disability.  Acceptance is about finally recognising and acknowledging the permanence and reality of life after diagnosis.

To learn to readjust to our new reality we need to embrace the life we have now.   Acceptance is not about giving up.

[Tweet “Acceptance is not about giving up but to learn to readjust to our new reality.”]

I thought about the ‘Five Stages of Grief’ recently after a day out with my carer.  As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.

Last week, my carer commented on how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more.  A reason for this is because I am in the wheelchair, I am not always on edge that my legs will give way, or on the days when the weakness is severe, I am not waiting for my legs to collapse.

However, as I also live with constant dizziness and regular bouts of vertigo and as a result of the continual movement while in the wheelchair, it was challenging for me to use it.  So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?

accepting the need of a wheelchair when living with a chronic illness
Accepting the need for the wheelchair has made going out so much easier and more enjoyable

One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair.  Perhaps, I have finally moved through these five stages and now accepted my new reality.  Before, I became worried not only about the wheelchair’s effect on my vestibular system but also with the judgements of other people.  That however no longer is a concern of mine and happy to be in the wheelchair.

Perhaps, it is much easier to live with a new situation when we have reached acceptance.  We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon our lives.

[Tweet “It is easier to live life despite the limitations of living with a chronic illness when we have reached acceptance.”]

 

Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair
Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

Today’s prompt is all about giving thanks for what we are grateful for; or what we are excited about or inspired by.  Thought I would cover all three!!

I am grateful for…

  • Firstly, I would say that I am grateful for the good days that I do have.  The good days seem to be rare these days, but I am grateful for when they do come around.  Having some many bad days, and feeling unwell, fatigued and weak; as if though if everything is an effort; so when good days present themselves, boy are you grateful!!  Having a little more energy to do chores, legs being stronger, and not as dizzy is a real blessing; and means that I can accomplish more and manage to have a little bit of fun!!
  • My new wheelchair: I am giving thanks to this new mobility aid, as it will enable me to be able to get out of the house a lot more, and more importantly it will enable me to stay out for longer.  Before I acquired the wheelchair, I was only able to go out for short periods of time due to the severe weakness in my legs, and especially as they give way if I am on my feet for very long.  Therefore, much of my time was spent in the house, much of the time alone.  Now I have the wheelchair however, I can go out for full day trips taking in shopping, or local tourist attractions.  Looking forward to it!
  • My family and my dog!: They have to be the biggest thing that I am grateful for – whenever I am unwell or feeling down, they are always there to pick me up and comfort me.  If I need something or need to go somewhere then they my parents will pick what I need up when they are out, or take me to appointments or wherever I need or want to go. They are all simply the best!

I am inspired by:

  • Other bloggers: I love to read other bloggers and health activists blogs.  Every one that I read are truly inspiring and shows a lot of strength and courage to spread awareness of their particular condition, as well as talking and discussing the painful or unpleasant symptoms that each of us face.  It would be so easy to just simply hide away and curl up in the duvet when chronically sick, but all health bloggers and health activists want to make people more aware and to understand their particular health condition (or the condition their loved one is faced with) and to provide support to those who are also living with the same condition – truly an altruistic act!
  • Reading – I absolutely adore reading – especially as my mobility problems have become worse and cannot move around as easily, so is truly blissful to be able to snuggle up with a great book.  Love those books that are able to transform you to different worlds, or experience other cultures – sometimes it’s as if you are taking a holiday without leaving your home!
  • Nature: I love how beautiful nature can be – the bright bold colours of flowers such as sunflowers or peony daisies, the different patterns and colours on butterflies.  Research has also found that flowers can actually reduce depression! Now if that isn’t a great reason to buy some flowers for a sick friend, I don’t know what is!

I am excited by:

  • I absolutely adore the writer Jodi Picoult and actually own every one of her 19 books, so one thing that I am definitely excited about is the release of her latest novel, usually released in March or April every year.  I always pre-order the latest release, and look forward for when the book gets delivered to me so I can start to devour it!
  • I get excited sitting down and relaxing in front of my favourite television programmes – it feels like an event, and particularly love the American TV dramas such as CSI, Grey’s Anatomy and Bones.
  • Volunteering – I enjoy and get excited by going down to volunteer at a local mental health resource centre every week, and feels really worthwhile giving a few hours of my time to help others

A few of my favourite things!…

What are the 3 things that you are thankful for, or inspired by or those things that get you excited?

Hello readers!

I know, I know I have been slacking lately in my writing recently but have been relatively busy and having stuff to deal with!

Firstly, I went away for a few days whilst my parents enjoyed a mini-break in Prague (lucky things!),  A friend of mine, kindly offered to let me stay with her, and I had a great time – it was lovely to have a break from the house, also known as ‘my prison’ and basically have a change of scenery.  The day my parents went away, was all a bit of a rush as in the morning I had an appointment at my local GP’s office for a wheelchair.  Now I am all measured up for my own wheelchair which I am hoping will give me more independence and will enable me to go out for longer periods of time.

And after, I came back from my break the hunt began for a personal assistant for myself.  An employee whom I can hire via a grant given by the local council.  With this I can employ a person to support me and take me on trips into the community and so on.

And yesterday I had two interviews with the applicants whom applied for the position – both were excellent and were extremely nice, as well as experience caring for others.  And now I have chosen one with whom I felt more rapport.  And soon I will be going out more, and really looking forward to start swimming regularly at my local swimming pool, hoping that it will help with the spasticity in my legs and ease the severe discomfort.

Oh, and I nearly forgot to mention that I have been nominated for a 2012 WEGO Health Activist Award!!  I have been nominated in the ‘Miss/Mr Congeniality Award’ which is awarded ‘to someone who always has a kind word, a positive note, and a virtual hug’!!

So, whoever it was who nominated me thank you so much!!

P.S.: And for all my readers I have recently set up a Facebook Page!!  If you click on the ‘like’ button on the Facebook widget, which can be found on the right hand side of the page and you can get updates on everything happening with the blog or myself concerning my illness straight to your Facebook timeline!!  So click ‘like’ today so you don’t miss out on the latest news!!

 

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…

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