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Chronic Illness

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On Wednesday at the ‘Life 4 Living‘ group that I attend, we had a very interesting seminar on Diversity.  In the seminar we were split into two groups and given a laminated sheet with a picture of an island, and a deck of cards with pictures of a diverse group of people, with only their occupation listed on the cards.  We were then told that a ship carrying the people on the cards was in an accident, which resulted in the ship sinking and the people being stranded in the middle of the ocean.  Each group had a lifeboat – however, on the lifeboat there were only spaces for 10 people, and hence we had to decide who of those people to save and whom to leave in the water.

This was obviously very difficult as the only basis we had to make our decisions is what they looked like and their occupations.  During our discussions we decided to save a doctor and nurse, to treat those with medical injuries, a carpenter to help build shelter from the bad weather, and gardener’s to help grow crops and nutrients whilst being stuck on the deserted island.

However, we soon learnt that the doctor who we chose to rescue was in fact a doctor of music and not a medical doctor.  And the nurse, was a veterinarian and so would not be very useful in treating human patients!  And the people whom we rejected, for example, the biker as we thought he looked like he would cause trouble, would in fact be extremely useful in an emergency situation as he was a surgeon.

This exercise, however, taught us how we often make judgements based on very little information causing us to make snap decisions on the type of person we are busy scrutinising.  We are too busy scrutinising others; determining the type of person we believe them to be instead of seeking out the person’s story.

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Many of you spoonies reading this will surely understand this; particularly those with invisible illnesses as we are often victim of others’ judgements.  For example, once I went out, and forgot my crutch.  Due to the problems with my balance, I was all over the place, and as a result, a woman came up to me and accused me of being drunk.  I have heard many other stories, of spoonies whom have been victims of incorrect assumptions made by others – people who have been accused of misusing a disability badge, because there were no outward signs of illness or disability, and thus were labelled as being healthy, and in no need of using a disability parking bay.  There are endless examples of these types of anecdotes that have been shared by spoonies everywhere.  I am sure everyone reading can think of at least one example from their personal experience.  Please feel free to share your experiences in the comment section below.

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So, the game that we played at Life 4 Living, and through the experience of living with an invisible illness, has taught me to not make assumptions about people, without getting to know them first.  To not assume that a person has no wounds, or illness because there are no scars; no signs of illness or disability as not all wounds, illnesses or disabilities are visible, many are hidden as if keeping a secret from the outside world.  And as the quote above also tells us, we also shouldn’t judge so quickly or harshly as we may find ourselves walking in that person’s shoes.

Perhaps if we weren’t so quick to judge in the exercise at Life 4 Living then we may have chosen the people that would have been useful whilst being deserted on that island, instead of those we chose based on our preconceived ideas regarding their abilities and resources that they would bring.

 

This is a lesson that we all must learn….

What gets you through the tough times with illness?  What are you go-to things when going through a flare, or your symptoms have deteriorated?

As many of you already know; some of my symptoms such as the dizziness and trembling in the legs have become worse.  These symptoms have not just affected me physically, but also has affected me psychologically.  Especially, as I have missed opportunities such as going to Life 4 Living, and even the trips out with my personal assistant have been cut short as I have felt so bad.  This has then made me feel down; negatively affecting my mood, leaving me to feel even worse – and the cycle continues.

Yesterday, however, although I felt unwell and the dizziness was bad, a friend invited me out for a meal; encouraged me to get out of the house and promised to cheer me up. I actually spent the day in my pyjamas, curled up with a blanket, and watched television and films.  The dizziness was so intense that the last thing I wanted to do was to leave the house; leave my safe cocoon from the world.  But I am so glad I did, as I had a fantastic time!

We went to our regular place for a meal; a place which to me is safe and familiar.  And as we chatted about what was happening in our lives, and laughing over funny little anecdotes that we were sharing, my mind was taking off the dizziness, even though my world was still off-balance and moving.  And for the first time, I felt content and happy despite the dizziness, trembling in the legs and the pain.

Sure, I was tired after arriving home, but I felt happy, and had great memories of a night out with a fantastic friend.  Spending time with friends and having a good time seems to be a great distraction from daily life with chronic illness and something that I need to see me through the tough times when dealing with the daily symptoms that the condition causes.

I couldn’t do it every night, clearly, and when I can barely walk or stand then my favourite DVD’s and my iPad and television will have to be enough to see me through the tough days with chronic illness.

What do you need when you are suffering badly with particular symptoms?  Is there anything which distracts you from fatigue, pain or depression?  Please share by commenting below!

 

Time for a brand new post; I know I have not written a post in a while, and for that I apologise.  The truth is that for some time now I have been struggling with my condition, and in particular the dizziness which I live.  For whatever reason. the constant dizziness has become much more severe.  I do not know whether the severe dizziness that I have been experiencing is a relapse, as the severe dizziness has happened before, or whether the dizziness is simply getting worse.

 

My reality
My reality

 

I have not been able to talk to many people regarding the sudden deterioration in symptoms; I often find it hard to talk about – when I try I just end up crying and in bits afterwards.  Perhaps I find it more difficult to talk to others, such as my family and friends as I do not want to worry them.  On top of this also, is the deterioration with the trouble with my legs; both the weakness and trembling in them have become worse.  The severe trembling and dizziness, however has recently made it very difficult when out; at both the social groups that I attend as well as the days out with my personal assistant.  These symptoms are so troublesome that the places and activities that were so easy for me, has now become much more difficult.  Yesterday, I had difficulty in getting back to the car which was parked further away from the garden centre then we usually park – it was not that much further, but because of the severe trembling in the legs, I almost didn’t make back to the car in one piece.

The wheelchair that I have is obviously a solution when my legs become so severe that they hold me back from doing what I want; but alas the dizziness makes it difficult for me to be able to stay in the chair, as I feel so dizzy even when sitting down.  What am I to do?  A lot of you reading this, may think that I am weird and not able to understand this quandary, heck even I don’t understand it – but unfortunately this is my reality; one in which I face everyday.

Everyone I know keeps suggesting that I go back to the doctors. People constantly ask me to describe the condition and what I go through everyday with it.

But how am I expected to describe something which I do not understand myself?  Even the doctors are unable to understand my condition and its symptoms recently the doctor who has been dealing with my condition and has left the practice that I am registered with and so as a result have had to find a new doctor to deal with. Whenever I do go and see the doctor, however, and report in the deterioration and severity in my symptoms I am often met with puzzlement – which obviously doesn’t inspire much confidence!

Recently, my parents booked the cruise that we have been looking at for a while, and although I am excited and very much looking forward to the holiday, this sudden deterioration in symptoms does make me worry slightly about how I will feel next year.  Will the severe dizziness still afflict me?  Will the dizziness withstand a cruise?   Only going on the cruise will i be able to determine this.  But looking at the silver lining at least it will be an experience I will never forget, and it is these memories that are priceless…

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