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HAWMC Day 27: To those who have hurt me, teased me and abandoned me…

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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 on given prompts.

Monday 27th April: Bye, bye, bye… 

Living with an illness, you are more likely to face people who don’t understand your daily struggles.  Sometimes, those people can be inconsiderate and hurtful.  Have you ever wanted to tell them how you really feel, but didn’t feel like you were able to?  Now is your chance! Write an open letter to the people who have hurt you.  What would you say to them?  What lessons would you like them to learn?

This is a tough post for me to write.  There have been plenty in my life over the years who have failed to understand the daily struggles of living with constant dizziness.  And as a result of failing to understand my struggles, and the neurological condition that I live with, many friends have failed to stick around in my life, and have lost many friends it seems as a result of chronic illness.  It seems that you really do find out who your true friends are when you are in need of friends the most.

Many people have hurt me and dented my self-confidence.  The hurt that I have felt as a result of hurtful words or abandonment, has made it difficult for me to be able to trust people.  I am now protective of my heart, who I let in my life and who to trust.

And all because of inconsiderate, intolerant and unsympathetic people. Writing can be a cathatric experience...
To those who have hurt me, teased me and abandoned me,

Words cannot describe how much you have hurt me.  

Words cannot express how low your cruel words and actions have made me feel.  

Do you have any idea that your words and actions can have such a lasting impact on a person?  

Do you even care? 

What if it happened to your son or daughter?  What would you think, or say to those who have hurt your children?  

Would you look back on the way you have treated me and feel remorse and shame?  Or have you forgotten about your hurtful and cruel behaviour?  

I often wonder if you have, as I wish I could. 

All of the name-calling, abandonment, and ostracisation have had a lasting impact on my life, and my self-esteem.  

The names that you used to call me, still stays with me, ‘freak’ is one such example.  

We were only kids back then, and suppose because of this I am able to forgive you.  Back then, nobody, not even myself, my parents or the doctors knew what was wrong with me. I was just experiencing vague symptoms; symptoms that made me different from everybody else.  Symptoms that made it easy to be picked on.  If we were all aware of the neurological condition that made me so different from you and everyone else, would it have made a difference?  Would have you shown me compassion and tolerance instead of the cruelty and intolerance? 

Dealing with the name-calling and bullying was bad enough, but what hurt even more than that was being ostracised and left out.  To have friends turn on me and abandoning me.  I wonder what is wrong with me for people to walk out of my life; for people to walk away and never contact again.  Like I never even existed.  Am I really such a horrible person to be with for you never to speak to me again?  Does it have to do with me as a person?  Or is it because you cannot handle my neurological condition? 

I know that I am unlike most of your other friends.  I know my condition prevents me from being able to go out at night clubbing or go on spontaneous trips.  I have difficulties in places such as the cinema, or shopping malls which makes outings very difficult for me.  But is that really a reason to end a friendship?  To just walk away and never talk to me again?  I like to think I am a good friend; with those dear friends, I have made online I try and be the best friend that I can be and be there for them when they need me.  Giving how many friends that have just up and left in my life, I have doubts.   At this moment I am writing this whilst watching One Tree Hill, and watching the strong and lasting friendships develop onscreen makes me jealous of these.  What is so wrong with me, that I have never had friendships like those?  What is wrong with me that no-one has wanted to be my friend for very long? 

Although these experiences have had a lasting impact upon my life and can be attributed to my lack of confidence and self-esteem, I do not want to hold on to bitterness or hatred towards the people, like you that made me feel so worthless.  I forgive you.  Yes, I have decided to forgive you because I want to be the bigger person.   I hope that since we last met, you have learned compassion and tolerance towards those people who are different to you such as those living with chronic illness and disabilities.  

I hope that when you have children you teach them to be kind, compassionate and thoughtful towards those who are different.  

Teach them to stand up for those who cannot stand up for themselves. 

From 

Rhiann

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Are neurological conditions in fiction ‘Left Neglected’?

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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:

Book report…What’s your favourite book and how can you tie it to your health or life?

For someone who is an avid reader, it is very difficult to choose one favourite book!  I am regularly discovering new authors who has written amazing and enjoyable reads that are both thought-provoking and compelling.  However, what does link many of my favourite authors and their books are the lack of characters who I am able to relate to in relation to life with a neurological condition.

Previously, I have written a post regarding the lack of credible and authentic portrayals of neurological conditions and other chronic illnesses within television.  Unfortunately, the same could be said regarding fiction, as there is a lack of novels featuring accurate representations of life with a neurological condition, or even chronic illnesses.  Perhaps, a reason for this is people want to read books for escapism, instead of reading a book about the often gritty realism of what it is to live with a long-term health condition, or perhaps it is the preference for a story that encompasses the hope of recovery and which depicts triumph over adversity.

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One book that I recently read and thoroughly enjoyed, however, did portray one character’s battle with a neurological condition. The condition portrayed in the book, was not in any way similar to that of my own condition but I did relate to the character’s frustration and certain parts of her journey depicted in the story.  The book is by a fantastic author named Lisa Genova.  Lisa herself has a PhD in Neuroscience and could be argued the reason why Lisa is able to intertwine realistic and accurate portrayals of neurological conditions, with not just accurate information regarding the condition itself but also the emotional toll that it can have on both the patient and caregivers.  The book that I particularly enjoyed of hers is ‘Left Neglected‘ a story of a high-powered career woman Sarah Nickerson who is left with a brain injury after a car accident.  The injury is to the right hemisphere of her brain, which as a result leaves her with a ‘left neglect’ or ‘hemispatial neglect’, in which the brain forgets and ignores information on the left side of her body, and also the left side of her entire world.  For example, after the accident, when her husband is stood by the left side of her, as her brain is unable to interpret or process the information Sarah is unable to see him; Sarah is also unable to feel anything on the left side of her body and therefore has to undergo physiotherapy in the attempt to learn how to walk  and generally recover from the traumatic brain injury.

Obviously, there  are many differences between the neurological condition that I live with and that of the character in the novel.  For instance, the condition in which I live with is not a result of a traumatic brain injury, and in addition mine is one in which is life-long and no chance of recovery, where as in the novel through hard-work, determination and the aid of physiotherapy, recovery can be a possibility.  The symptoms of the conditions are also extremely different – in the novel, the character Sarah has to learn and re-teach her brain to acknowledge the left side of the world and her body.  In my everyday life, however I have to contend with constant dizziness, vertigo, trembling and weakness in legs as well as battling fatigue and nausea.

However, as much as there are extreme differences between my situation and that of the main protagonist in the novel, I did find myself relating to the book and that of the experiences of Sarah.  As a high-powered career woman, Sarah was not the type of person to sit around, and therefore the novel excellently explore the frustration of suddenly being unable to do the simplest task for yourself.  On the days where the severity of the weakness and trembling in the leg leaves me unable to get out of bed and so I feel the same frustrations of not just being stuck where I am and unable to do anything for myself, but also the frustration of not being able to do the things you love.  Furthermore, I could really relate to the frustrations of the lack of progress in physiotherapy and the temptation to push yourself before you and your body are ready, leaving to a great many accidents which I have also experienced during my time in physiotherapy and whilst at home.  Very often, when our bodies are at our weakest we adopt a “win” attitude.  By which I mean, we attempt to defy the weaknesses and challenges of our conditions and attempt to ‘run before we can walk’.  And by reading the book, it seems that both myself and Sarah have learnt that instead of trying to ‘win’ and suffering setbacks in the process, such as suffering falls and other accidents, we should instead accept the limitations that our conditions poses and adjust our lives accordingly.

The one thing that I loved and really took away from the book is how that despite limitations and various disabilities does not mean the end of doing what we love; that we can find different ways of doing things or taking part in activities which we never thought possible.  In the book, for example Sarah goes on a vacation with her family and before the accident she loved snowboarding on the slopes where they stay.  It’s at this point that she imagines that she will never be able to snowboard again, however after visiting a shop designed for those with disabilities she found that she may not be able to do like she did before the accident but there are ways in which she can still participate.  It’s this lesson that I have learnt for myself, and one which I am constantly learning as I am finding new ways of adjusting to the challenges that my condition presents.

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Recent 5 Challenges and Small Victories

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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:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going

Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition.  I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.

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Challenges 

  1. The first challenge that has been rather large in my life recently is definitely fatigue.  The fatigue recently has been constant and unrelenting.  Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel.  After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep.  It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
  2. My legs have also been challenging for me as late.  If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them.  The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body.  I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
  3. The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair.  Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer.  Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out.  More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
  4. I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to.  It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation!  It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence.  It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
  5. Feeling reliant on other people most of the time.  It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you.  I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own.  It’s very frustrating!

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Victories

  1. I have mentioned this in a recent post entitled -‘I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there!  This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used.  My carer and I have been trying for a long time for me to even set foot in there.  It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time.  I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
  2. This actually links in with a challenge listed above regarding the use of a wheelchair.  Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair.  The dizziness was severe, and so I was nervous about using it.  But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around.  I felt in control whilst using the wheelchair for the first time in a while.  This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
  3. I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently.  It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
  4. One thing that really keeps me going are the networks that I have created thanks to social media.  The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling.  I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
  5. My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness.  A lot of people have contacted me regarding my board, and have even created one for themselves!  I love that I have inspired others and help make someone stay positive through their own illness or troubles.

So, those are my recent challenges and small victories!  To read about what I had written previously then please go to ‘HAWMC Day 27: 5 Challenges and 5 Small Victories…‘

What about your own challenges and victories – have they changed over time as your condition has changed?  Would love to hear your thoughts and suggestions.  Please feel free to post your comments below…

 

 

 

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HAWMC Day 27: 5 Challenges and 5 Small Victories…

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Welcome Everyone to another edition of ‘My Brain Lesion and Me’.  A new post for a new day of the WEGO Health Activist Writer’s Month Challenge, in which I have been writing a new post every day throughout the month of April.  Today’s prompt reads the following:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going.

My 5 Challenges:

  1. The fact that the condition is invisible, unable to see the suffering that I go through or when everyone presumes that I am healthy because I look ‘normal’.  Especially when going to see doctors and consultants, sitting there and having to justify why you have taking up an appointment to see them as you look fine and healthy.  Having some doctors not believing the symptoms that I am experiencing are real, and using the “it’s all in your head” excuse when they can’t find an explanation for the symptoms
  2. Not being able to make plans – It’s very hard living with a condition which fluctuates between ‘not  feeling too bad’ and able to function on some level and ‘feeling absolutely terrible’ and being hold up in bed, feeling as sick as a dog! And as I am unaware of how I am going to feel on a particular day or not knowing when symptoms are going to arise, it makes it so difficult being able to make definitive plans on going anywhere.  Am unable to book those tickets to see a concert that I want as I do not know how I will feel on that day, and so on.  And as you cancel plans on going out with friends, they soon stop calling and asking, and then are left with feelings of loneliness and isolation, even as if your friends are ostracising you, as if your condition is somehow contagious.
  3. Not being able to leave the house unaccompanied due to the risk of injury or the onset of an attack of vertigo.  This is particularly hard, especially as friends have come and gone in my life, which only really leaves my parents taking me to places where I may want to go or need to go.  And of course they both need to work, leaving me the majority of the time being stuck in the house alone, lonely and depressed without company.
  4. The weakness and unpredictable nature of my legs – As I have previously mentioned due to the spastic paraparesis, my legs are incredible weak and tend to collapse from under me with no warning, and also means that I am unable to stand for very long.  This means that if I am going out anywhere, it can really only be for only a short period of time, or if I am going out for a while for any reason, I need to take regular breaks to sit down in case of a fall and to prevent an injury occurring.
  5. Being reliant and a ‘burden’ on other people.  I would love to be much more independent and being able to do much more things for myself.  There are so many ambitions and little things that I have wanted to achieve such as passing my driving test, which I am unable to do because of the condition.
My 5 Small Victories:
  1. The friends that I have made on Social Networks such as Facebook and other support groups.  These amazing people have really kept me going through the dark and painful times in my life.  I live for the meetings on Skype, where we discuss our conditions and how we are feeling, picking those up when they are down and celebrating our achievements.  They have become like a second family to me, and are all amazing and special people. It’s also amazing to have people there who can relate and know what I am going through and reminds me that I am not alone.
  2. Being able to achieve little goals such as doing some chores around the house for my Mum, or doing a little bit of cooking for myself, is at times a major achievement for me as I often feel so unwell, and often having to battle through especially when I have the tremors in my legs, making it so difficult to stand.  And is also a great reminder that even though I do have a disability that I still have skills and other things that I can offer.
  3. Going somewhere new without any problems is sometimes a major victory for me, especially as I often feel anxious about going somewhere new, not knowing what it’s going to be like there, as particular features such as high ceilings, or particular lights can set off an episode of vertigo.  It also creates anxiety as even if it hasn’t any features which I find triggers vertigo, I still am unable to determine how I am going to feel once I’m there, or if my legs are going to collapse from under me leading to a fall, which can be very embarrassing in public places with everybody looking.
  4. Completing voluntary work every week is a small victory that I can say that I have achieved.  Even if I feel relatively unwell, or am having troubles with my legs I still am able to push through to go to the Resource Centre, where my voluntary placement is based.  It provides myself with the opportunity to leave the house for a few hours every week, being able to talk to new people, and being able to make themselves feel good about themselves or helping them in some small way is fantastic and again is a great reminder that I still have things I am able to offer.  It can also be a great way to forget about your own troubles for a while, and to focus on others can be very uplifting.
  5. My major accomplishment that I have achieved has to be completing my degree in Psychology.  Having the problems that I do, made it so much harder to achieve – but I still managed it.  Just goes to show that even with a chronic condition as myself doesn’t have to stop you from achieving something that you want from life – I’m unable to drive or even learning to drive but gaining a degree is something that I CAN achieve!!
This has been a great prompt – and has been a great way of thinking differently about my condition and the ways in which it affects me.  The Small Victories section and was great at being able to think positively and ways in which we with health condition such as myself can still contribute in the community at large.  Thank you WEGO Health!
Again would love to hear from you all regarding your thoughts.  What are your Challenges and Small Victories in life?
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