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HAWMC Day 13: In Need of a Dose of Self-Confidence

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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 13th April: Perfect Comeback

Tell us about a time when you felt marginalised or stigmatised by someone because of your health condition.  Maybe at the time you didn’t speak up, or maybe you did – what did you say or what you have said to take back control and let them know that they were out of line?

It is an extremely difficult prompt for me to answer.

I guess that I am lucky that I have never been in any situations where I have felt marginalised or stigmatised because of my health condition.  One reason, for this, maybe is because the disorder which I live with is neurological, and therefore invisible.

By just looking at me, you could never know about the battle I always live with regarding my health and mobility.

Sure, I use a crutch when I am out of the house, but even when I am out with the mobility aid, I have not encountered any negative comments from other people.  Some ask questions about the reasons behind it, often assuming that the crutch is temporary due to an injury to my leg.  A situation which does not warrant confronting them about being out of line, I am sure you will agree.   Others comment on the look of my crutch, loving the orange colour of my stick.

A bright and funky crutch can be a real talking point
A bright and funky crutch can be a real talking point

The only examples of when I may have been stigmatised are times when I have been in my wheelchair, and when in shops, for example, people have started talking to my carer instead of myself, assuming that I was unable to speak for myself.  Looking on social media, and reading other blogs by fellow spoonies, unfortunately, this assumption is widespread with many reporting that they have felt people have spoken to them as if they are stupid when in a wheelchair.  Why this is, I cannot say, but perhaps many are misinformed about disabilities and failing to distinguish between physical and intellectual disabilities.  These anecdotes suggest that many people are wrongly assuming that those in wheelchairs due to physical limitations or conditions also have an intellectual disability.

Being in a wheelchair can be lonely and isolating enough without people assuming that we are also stupid!
Being in a wheelchair can be lonely and isolating enough without people assuming that we are also stupid!

In this situation, I could have said something to educate them on the facts.  I could have informed them that there was no need to talk to somebody else besides myself, as someone holding a degree in Psychology, I am perfectly capable of speaking for myself.  However, I didn’t.  Why is that?

Well, as somebody who was bullied at school, I lack self-confidence and as a result, find it difficult to speak up for myself.  Even all these years since, assertiveness is a skill that I struggle putting into practice.  Whenever someone says a snide comment, I am unable to think of a good comeback remark to the person, and if I did, I am too timid to say it to them.  Even when in need of complaining about bad service or product, I am much more confident and adept at putting my thoughts in writing.  I am somewhat of an introvert, being more comfortable with reflecting on social interactions rather than being comfortable in participating in them.

So, during those situations when a person has wrongly assumed that I am stupid or unable to talk for myself, honestly I am not sure of the appropriate response or how I would respond if the situation arose again.  But, perhaps maybe this prompt has made me aware of the need for assertiveness training and a dose of self-confidence.

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There are a few of my favourite things…

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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.

The prompt reads as given:

“These are a few of my favourite things”…It may not be brown paper packages wrapped up in string or warm woollen mittens, but what are some of the things you love?  What couldn’t you live without?

I have a lot of things in my life which I love – my friends, family and my pet dog Honey are at the top of that list but as I have written about them numerous times already, I have decided to concentrate on the things that I love which provide me with comfort on the bad days and helps me to stay positive.

So what is in my own personal ‘Comfort Box‘?

First of all is a pair of comfortable pyjamas.  I have a pair in which the bottoms are chequered and a simple pain black top.  It is great to have a comfortable pair of clothing to keep near the bed, as whenever I am stuck in bed due to my condition I still am able to change into something clean as an alternative to staying in the pair of pyjamas that you have had on all night!  It is also convenient for those days in which you have no energy to be able to pick out an outfit and are planning to stay at home anyway.  The pyjamas that I have kept for those many bad days, look more like lounge wear than conventional pyjamas so is less embarrassing if the postman knocks on the door to sign for a parcel!

Another favourite of mine to keep next to my bed is definitely my iPad.  When stuck in bed, it can be extremely monotonous and dull.  Therefore, I love my iPad as it keeps me entertained with a variety of different apps to use to suit my mood.  For instance, there is the Kindle app for when I fancy to lose myself in a book, or even Netflix when spoons are nonexistent that all I have the energy for is to watch a television programme or film that requires little thought involved to enjoy, or sometimes watching videos of cute and adorable dogs on YouTube to cheer myself up when stormy clouds appear, blocking all sunshine and positivity in my life.  I am even able to stream the many number of films and television programmes that I own from iTunes which can keep me entertained for hours.  Then there a number of games that I have downloaded to the tablet computer; a great distraction from pain and dizziness that seems to plague my life so much.  In my opinion, tablet computers are a must-have gadget for spoonies – it is easy and light to carry and can easily be used in bed, and the features that are available on tablets such as the iPad mean that you never have to be bored whilst stuck in bed again!

One thing I have learnt about living with a chronic illness is how important it is to have a relaxing place to recuperate. These not only brighten my bedroom but also puts a smile on my face
One thing I have learnt about living with a chronic illness is how important it is to have a relaxing place to recuperate. These not only brighten my bedroom but also puts a smile on my face

Above my bed, I have just placed some butterfly LED lights, which is now another one of my favourite things.  As many of you know, I love butterflies and have many accessories and pieces of clothing which has butterflies all over them.  When I saw these in a local shop, I thought they would make a lovely addition to my butterfly themed sanctuary.  Not only do they brighten my room and provide light, for when I am awake with painsomnia (for explanation of term see my series of the ‘A to Z of Chronic Illness‘) but they just put a smile on my face when recuperating in my quiet, relaxing space at home.

Some of my favourite letters and cards :)
Some of my favourite letters and cards 🙂

I treasure all of the cards and mail that I have received from numerous friends.  Their beautiful words and lovely sentiments never fail to bring a smile to my face and cheer me up when feeling low.  These are perfect to read again and again, especially when suffering a relapse or flare in your condition.  Letters from friends, or relatives remind you that you are not alone and that there are people who care when it can often feel that you are alone.  One of my favourite letters is one I received from the extraordinary  young woman ,Jodi Ann Bickley, who after suffering from ill-health herself established ‘One Million Lovely Letters‘; a project in which she writes letters to those who need a lift, whether it be because of illness, a breakup or bereavement.  The letter is gorgeous; with beautiful meaningful words and complete with glitter and sparkle.  The letter means so much as it is a reminder that I am so much more than my condition, and how I am not alone in the fight against my condition.  It is a perfect antidote to a bad day due to my neurological condition.

Some goodies from 'The Itty Bitty Book Company'
Some goodies from ‘The Itty Bitty Book Company’

Another item that brings me comfort is the little items that I have bought from the wonderfully positive company ‘The Itty Bitty Book Company‘.  This small and ethical company promotes positivity through using inspirational and motivational quotes in little books, prints, cards and even badges.  The quotes are all ones which I love and find helpful during times of struggle; I often take them to hospital appointments to help give me strength and positivity.  The designs are also truly beautiful and the bright colours makes me instantly smile.

Positivity Board -full of hope and inspiration
Positivity Board –  full of hope and inspiration

Another favourite thing of mine, is actually something that I created and that is my positivity board.  It has everything that inspires me and keeps me positive despite chronic illness – letters from friends as well as cards that I have bought with inspirational and positive quotes on such as “Life isn’t about waiting for storm to pass but learning to dance in the rain” and “Everyone wants happiness, nobody wants pain, but if you want a rainbow you need a little rain”.  It is these quotes and the idea of the positivity board which really helps in keeping me inspired and positive despite all the trials and tribulations that comes with the symptoms associated with my neurological condition.  Recently, I have found some ceramic shapes that also has lovely and positive quotes on them and as I have not go much space in my bedroom to hang them, I have therefore decided to place them in my comfort box and get them out when I am having a rough day because of how I am feeling or stuck in bed due to the weakness in legs.  These items are a great reminder that no matter how life may be tough in the present, there are still many more good moments to come; they inspire and uplift me when life with chronic illness becomes too hard to bear.  They help me remain a positive person and that are why they are part of my favourite things and carefully placed in my comfort box.

Some inspirational quotes
Some inspirational quotes
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HAWMC Day 13: 10 Things I Couldn’t Live Without….

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Hello, again!!  Another day, and another post for the WEGO Health Activist Writer’s Month Challenge.  Ready?  Today’s prompt reads as follows:

10 things I couldn’t live without…Write a list of the 10 things you need (or love) most…

Another challenge that sounds so easy, but when sitting down and trying to complete it is actually quite difficult.  I presume that things such as food, water, air don’t have to be included as these are things that everyone needs to survive and live.  This challenge seems much more personal…things which I probably could live without, but things which make my life better…

So here’s my Top 10 Things I Love Most or Couldn’t Live Without (and in no particular order!):

My Parents – an obvious first choice, as they are the most amazing parents – supportive and caring.  They are both my rocks and have been with me through the good and bad times, and Dad without moaning, drives to appointments or wherever I need to go, or if I need to go to the shops for something, and when he’s not working will go out and buy me lunch which is a great help especially when my legs are feeling particularly weak so don’t have to worry about standing to make myself something to eat.  And Mum is super brilliant – helping me out whenever, phoning to check on me if they are both working and I’m alone in the house.  Mum is also the greatest person to talk to whenever I am feeling down or having a bad day, and we also have a great time together on the rare days we go out shopping together, or even staying in the house and watching a film.  No words can express my gratitude to them or how much I love them…
My Dog – my dog Honey, although crazy and unbelievably annoying at times (you should see her whenever people come over, particularly when they leave!!).  However, she is also the most sweetest, caring and loyal dog – if I’m on my own and have a fall she is there by my side straight away making sure that I’m OK.  Or, if I’m having a particularly bad day, and balance is bad and my legs are very weak she is constantly following me, and never wants to leave me out of her sights.  And if I’m bad, and lying in bed or if I’m on my computer, she will lie down beside my bed, or on the bed, or lie beside my computer chair.  Once I fell whilst on my own, and was unable to get up afterwards, and she lay down beside me the whole time, until Mum came home approximately 20 minutes later, soon as she came through the door Honey rushed to her to alert her that I needed help.  She is a super dog!!

Other family members – As with my parents, also couldn’t live without other members of my family, all of whom are also supportive and help whenever they can.  I have stayed with an Aunt and Uncle of mine when my parents have gone away on holiday, as couldn’t cope on my own for the duration that they would be away, and so they kindly took me in and looked after me in their absence…

My Crutch – My crutch is my main mobility aid which I am finding that I am becoming more reliant upon.  Whenever I am out of the house, I constantly make sure that I have my crutch with me as due to the dizziness and problems with my balance, I find that it is something that helps ground me.  And also due to the weakness in my legs, the crutch is incredibly useful to help keep me somewhat upright whenever my legs buckle or give way.  And it means that I can have somewhat more independence in the sense that I do not constantly have to hold onto somebody when out…

Online Friends and Community – The girls who I have met online are also something I can not live without now that I have met them.  It’s lovely to have finally found a group of amazing and special people, who I count upon during the good and bad times…who can understand what I am going through.  And it’s lovely that I am able to talk to them online via Skype and we can share our problems, or triumphs and have someone on the end of the computer to talk too when going through a horrible time of it, and know there is someone there who understands.  Love you guys and a special shout out to Marissa, Theresa, Lynda and Michele…

My Computer – Another love of mine and something that I couldn’t live without.  It enables me to buy things that I need such as new clothes, books or DVD’s, as I am not always able to get to the shops to buy these, especially long shopping trips due to the weakness in my legs and the inability to stand for very long.  As I found recently, when I have had the rare chance to get out, not all clothes shops even have benches or seats in their changing rooms, which I need to use, and as a result had a few falls whilst trying some clothes on – online shopping makes it so much easier in that I can order clothes and have them sent to me and can try them on at home.  Also enables me to Skype with friends who I have made online and who are very special to me, and other chores such as paying rent or researching and of course writing the blog!!…

My extensive DVD Boxset Collection – Yes, I have quite the Boxset Collection in my possession – CSI, Bones, Criminal Minds, Grey’s Anatomy, Private Practice and the rest.  But these are great at keeping me occupied during the times I am alone, stuck inside the house, or to give me escapism from my illness.  They also come in handy, on the ‘very bad days’ when my legs are so weak, and I am feeling very bad that I cannot get out of bed, and so they are excellent at keeping me occupied and entertained during those time…

Music – Yes, music is another passion of mine.  I love all different types – pop, rock, jazz, blues.  I listen to it when doing chores, or am stuck in bed, when I’m on the computer, to remember memories from the past or to create new ones. Music to make me happy or to wallow in when feeling sad.

Twitter and Facebook – I probably could live without these, but these are excellent resources for finding friends new and old, for keeping in touch with friends or family living near or far, or for generally keeping in touch with the latest news or gossip.  I use it a lot for the support group aspect – for making new friends who may be experiencing similar problems as me.  They are also fantastic for reaching out to different companies or for finding organisations which may be able to provide support or help. Also, a great tool for spreading the words of my blog and to let people know when there is a new post up…

Books – I could not live without my books…especially my Jodi Picoult novels as I adore all of her work and is a writer I really admire.  Love books which can provide escapism, to take you off and wonder different countries or worlds. Books which explore the past, present and future.  And especially, as with Jodi Picoult books, ones which make you think and question different moral and ethical questions.  If there are any avid readers out there, I would thoroughly recommend Jodi Picoult’s works!!  And there are an extensive number of books, to help you learn help you with particular problems or concerns.  Having a chronic and invisible illness can be so tough, knowing that there isn’t a cure out there or no treatments that can really help, so I have found a book called ‘Sick and Tired of Feeling Sick and Tired’…a books which provides hope and coping strategies for those like me suffering from an invisible chronic illness, and how to deal with the emotions and difficulties that come with living with them.  A book that has also been recommended to me is ‘How to Be Sick by Toni Bernhard.  All books mentioned can be found at Amazon.com (US), Amazon.ca (Canada) or Amazon.co.uk (UK).

So those are my Top 10 of things that I couldn’t live without, what are yours?

All comments welcome….

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