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Lesson Learned! Don’t walk down the stairs with trembling legs…

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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 prompts given.

Today’s prompt reads as follows:

Lesson Learned…What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make the same mistake again

There are many lessons that you learn when diagnosed with a chronic illness, such as acceptance is not about giving up and you are not defined by your diagnosis.  But it is not these big life lessons that you learn whilst living with a chronic illness but you learn everyday on how to live with your specific condition.  For example, I have learnt that in order to cope better with the dizziness that is a good idea to wear a hat, with a fisherman’s hat being the preferable choice, as it blocks out more visual stimuli than other styles.  I have also learned to tell when I need to use the wheelchair, or when I need to take a nap.  However, one lesson that I should have learnt a long time ago is one which I learned the hard way…

The style of hat that is most effective in lessening the severity of the dizziness
The style of hat that is most effective in lessening the severity of the dizziness

The lesson happened one night in late February, Mum and Dad had gone out to see a concert and so I was left home alone.  On that day, I remember it was one of my bad days, with the dizziness and the trembling in my legs particularly bad, and so before they left my Mum had done the washing-up as I was unable to stand for long.  And so they left me in front of the television with a packet of sweets; as my legs was so bad, I probably should have known just to stay lying on the sofa and find a film to watch.

But instead, I thought it was a good idea to walk upstairs to grab my Kindle as there was nothing to watch on the television and walk downstairs.  However, instead of walking down the stairs, I fell down them as I had suddenly lost all sensation in my legs (probably should not have wished for the trembling to stop!).  Fortunately, I was fine – a little shook up, but I hadn’t broken anything.  Well, I hadn’t broken any part of my body, but the Kindle that I was bringing downstairs?  That was indeed broken – the screen had cracked and so became completely unreadable.

The casualty from my tumble down the stairs...
The casualty from my tumble-down the stairs…

 

As an avid reader, this really upset me as it was one of my gadgets that I regularly use, and as I was saving towards the holiday I could not afford to replace it.

The story does have a happy ending however; after it happened I talked about the incident on social media, I think partly as I was on my own and still shook up about what happened and it was my way of having company, or at least some version of it.  A few days after it happened I was sent an email from an employee at Amazon UK who had heard about my fall via social media and the company was offering me a replacement Kindle free of charge!  It was an amazing act of generosity that I will never forget and I am now a happy owner of a new Kindle and reading books on it to my hearts’ content!

But a lesson that I learnt from the incident is when the weakness and trembling is as bad as it was that night, then to stay sitting or lying exactly where I am and not to exert my legs in doing more they can handle.  An important lesson but one which I learned the hard way! (And you will be happy to know that I no longer walk down the stairs holding my Kindle!)

A special thank you to Amazon too!!

What are some of the lessons you have learned during your life with chronic illness?  Are there any that you learned the hard way?  As ever would love to hear your thoughts and comments on the blog post, or the blog generally.  Please feel free to leave your comments below…

 

 

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Don’t judge others for you do not know their story…

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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….

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HAWMC Day 17: Learned the Hard Way…

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Welcome again to another day, and another post for the 30 Days, 30 Posts Challenge for WEGO Health Activist Writer’s Month Challenge – and some of these posts have certainly been a challenge!!  I hope you have all enjoyed reading the entries so far, and today’s prompt is another one which really requires a certain degree of reflection:

Learned the hard way…What’s a lesson you learned the hard way? Write about it for 15 minutes today.

There are a great many lessons that someone with a chronic health condition can learn through the journey of being unwell.  However, the one I have chosen was inspired by a quote I found on my Pinterest page, and says the following:

There are so many times where I have sat and wondered what my life would be like if I didn’t have the long-standing brain stem lesion and spastic paraparesis.  Where I would be in life, and what I would be doing with it? Would I even be living in my own place, away from my parents?  So many times, have I dreamt of the life that I so desperately wanted – a good job, my own car and house, good friends to share good times with and so on.  And also been many times where I have wanted to be anyone else but myself.

However, as the quote says, dreaming about a life that we don’t have, very often stops us from living a life that is out there waiting for us to grab it with both hands…

Very recently, myself and my parents have referred myself to Social Services.  To find out what help there may be to help me live a fuller life – maybe help to get me out of the house more instead of being stuck indoors the majority of the time, to gain a more independent and active social life.

And as I have found out, it looks like I am eligible for help.  For instance, there is a scheme called ‘Direct Payments’ where a person is given a grant from the local government in order to employ a personal assistant.  On personal circumstances, and the needs of the person themselves, these personal assistants may be for someone to come in to the house and clean, or in order to pursue social activities in the wider community – trips to the local cinema or theatres, using the services of the local leisure centres and so on.

In addition, I may be eligible for an assessment by Occupational Therapists for mobility aids and adaptations to help me around the house and in order to prevent accidents and falls. It may be that I could have a wheelchair to help get outside of the house more, and to prevent falls outside and without the worry of my legs giving way.  A wheelchair may be a fantastic idea, as it would give me the opportunity to visit more places, and to visit them for longer as I’m finding that whenever I am going out, it is only for short periods of time due to the weakness in my legs and the fact that I am unable to stand (and therefore walk) for long periods of time.

There are also schemes which take disabled or people are otherwise unable to get out of the house on day trips to places outside of the local community as a means to getting to know others and to help starve the loneliness that they may otherwise face.

Therefore, if my days weren’t spent dreaming of a life other than the one that I have, it may be that I may have looked and found help sooner.  I may have thought about the possibility of gaining help from Social Services before it was suggested to us my somebody else if I weren’t wishing away my condition or dreaming about being anybody else other than myself.

If I hadn’t done that I may be living a different kind of life that was waiting for me and just within my grasp – met all different kind of people, made new friends and contacts, and seen different places that I may otherwise not have seen, instead of being stuck inside with no company to speak of…

This is the lesson that I have recently learnt, and learnt the hard way…

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