Category

Chronic Illness

Category

405097_10150737750419254_36556179253_11203190_1028463521_n

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.

Thursday 16th April: Life Goal

What’s one thing that your 10-year-old self thought you would do?  Can you still do it?  How would you approach it to make it happen?

Me at ten years old really seems like a lifetime ago; more than the nineteen years that have passed since.

In all honesty, I cannot remember anything that I thought I would do as an adult.  By that age, the dizziness that now is constant in my life had started.  At ten, the dizziness was not constant but was experiencing episodes of severe dizziness and vertigo.  These episodes were becoming very frequent, and as a result, it felt like most of my time was spent waiting for the next attack.

As at the age of 10, I was not really aware of what was happening in regards to my health and the reasons for the dizziness; but experiencing frightening symptoms at a young age can be anxiety provoking.  It makes you aware of the present, constantly on edge for the next attack. As a result of waiting and worrying for the next attack of the dizziness, I was therefore not thinking or making plans for the future.  I was too preoccupied with the present and the symptoms that were afflicting my life.

Life often has a way of making us to look at the past, present and future
Life often has a way of making us look at the past, present and future

Although, as a child who has always been studious, I suppose that I have always had the wish to further my education and attend university.  At that age, like many children at that age, my career aspirations were constantly changing; from wanting to become a teacher at one point to wanting to become a nurse during another.  Even if I do not make any more of my past aspirations a reality, at least I have made that university plan a reality, gaining a degree in Psychology.   Attending university and getting that degree whilst living with a neurological condition, and battling against the dizziness, fatigue, and pain was not easy and had to have a lot of help (such as a buddy to take me to lectures) from family as well as the university staff to make it happen.

Fast forward to me at twenty-nine and I suppose I still tend to focus on the present (and occasionally on the past) and not on the future.  It can be scary and worrisome to make plans for the future when living with a chronic illness, as we have no control or even an idea as to what our health will be like in months or years to come.  Experience from having to cancel plans with friends as a result of chronic illness, warns us of the perils of making short-term plans, so making more long-term plans is even more difficult.

The-Challenge-Of-Living-In-The-Present-Momentjpg

 

Over the past several years, the symptoms caused by my neurological condition, have become increasingly worse, so looking ahead to the future is a frightening prospect at the thought that in the years to come, my condition will be even worse than it is, therefore, perhaps when living with a chronic illness it is best to live in the present and appreciate all the little happy moments that happen in the here and now.

Today's a gift. That's why it's

 

375768_10150737749969254_36556179253_11203186_1882626767_n

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.

Wednesday 15th April: Get Excited! 

What revs up your internal engine?  When you see, hear, feel this it gets you excited and ready to face what comes next.  Tell us what it is!

In my recent experiences with dealing with severe and debilitating symptoms due to chronic illness, it is often very difficult to get excited about anything.

In the mornings, experiencing severe symptoms such as dizziness, pain, nausea and trembling, it is often a struggle to get through the day with enthusiasm and joy.

Recently, however, I have joined several groups through the internet, where you can meet and become pen pals with other people.  A couple of these groups are especially for those living chronic illnesses, or other long-term health conditions.

It is lovely receiving small gifts, or letters through the letterbox especially when they arrive unexpectedly.  Reading positive, inspiring and motivational words from others can be a real boost to start the day, especially on the days which are particularly bad.  These words are especially special and meaningful when they come from other people also living with chronic illness and therefore can understand the challenges and difficulties that I face living with a neurological condition.

Receiving cards and letters are much more personal than emails for example and are lovely to keep and look back on when we really are in need of a lift or a reminder of everything good.

Something really special about receiving letters, don't you think?
Something really special about receiving letters, don’t you think?

Writing and keeping in contact with other people also allows me a connection to the outside world and as a way of making new and maintaining existing friendships, as the severity of the symptoms I live with keeps me in the house a lot of the time, and as I am unable to get out of the house unless I am accompanied by another person.

It is not just receiving cards and letters that evokes happiness.  It is also writing and sending cards and letters to others that brings me joy and happiness; the thought that the cards and words that I write will cheer up and help somebody else is also pretty exciting!

Writing and receiving letters is a real joy
Writing and receiving letters is a real joy

hawmc_2012_dayprompt-14

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.

Tuesday 14th April: “I feel best when…” 

Write about moments when you feel like you can take on the world.  Where, when and how often does this happen?

Again this is an extremely difficult prompt for me to answer.  For some time now, too long to remember when it started, but the symptoms have become much more severe and debilitating.  As well as the deterioration in the severity of the symptoms, the symptoms themselves over the years has become constant.

It now seems that I never get a respite from the symptoms such as the dizziness, trembling in the legs and pain.  Not all the symptoms, however, are constant, for instance, certain triggers provoke visual disturbances, and although these symptoms are not consistent, they still occur more than they used to.

Therefore, as I never get a break from living with the symptoms, every day can often feel like a struggle and can feel that I never feel my best and able to take on the world.

This is especially the case when going out after a restless night’s sleep due to pain, which has been the case for a few months.  Furthermore, as the trembling and dizziness are so bad, it is a struggle to be able to get out of the house, never mind finding the stamina to take on the world.

Living with symptoms which are constant can make it difficult to be able to take on the world
Living with symptoms which are constant can make it difficult to be able to take on the world

Although, I do find that when I am feeling at my worst due to the pain and trembling in my legs as well as the dizziness and I somehow find enough strength and determination to achieve something that I have struggled to do, such as going to a place that is difficult for me (e.g. retail stores which have high ceilings or a lot of fluorescent lights).

When I do, I suppose it is the closest I can feel to being able to take on the world; I experience a surge of confidence when I have been able to battle through the debilitating symptoms to achieve a goal.  I cannot remember when the last time it happened, but I can remember feeling so happy and proud of myself after managing to stay in a local Next store despite struggling to cope with severely trembling legs and horrendous dizziness.

34942308_Next_290666c

The symptoms were so severe that during the entire trip, I felt like I needed to get out of the store and go home.  However, despite how bad I felt, I fought through the symptoms and managed to stay in there, even long enough to queue and buy an item of clothing.  For me, at this time it was an immense achievement as there were many times when I was unable to go to the store due to my symptoms.

I also notice that when I can push through the symptoms and able to accomplish a goal, I am also able to do more and go to other places too.

Perhaps it is the little achievements that we as spoonies manage to carry out despite living with debilitating and continuous symptoms that can make us feel like we can take on the world.

 

398949_10150737747909254_36556179253_11203171_759279640_n

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.

408463_10150737747764254_36556179253_11203169_350344195_n

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 given prompts.

Sunday 12th April: Day of Rest

Kick your feet up!  What is your ideal day in?  When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself?

Self-care can be defined as the process of maintaining health and managing chronic illness through health promoting practices and self-management.  It could also be defined as coping strategies during relapses or flares of symptoms.  Self-management are behaviours that are performed in response to signs and symptoms of illness.

When living with a chronic illness, therefore it is important to embed self-care and self-management practices into one’s routine.  Perhaps one important aspect of self-care is having a day of rest on days in which symptoms are particularly bad, or even days following a relapse to allow the body rest and recuperation, and a chance to regain depleted energy levels.

images

Recently, the symptoms associated with my neurological condition such as pain, dizziness and the trembling and weakness in the legs have been debilitating; often finding they become worse days after trips out with my carer.  As a result, I have been in need of days of rest myself, so this post should come easy!

These are some of my top tips for activities to put into place on those bad days, or just for when you need to relax, recharge or recuperate from life with chronic illness:

  • Date with Netflix (other streaming service are available!) or DVD: When I am having a bad day, or in need of a quiet or relaxing day, then watching a film is one of my favourite ways to spend my time, especially for someone who is somewhat of a film buff.  In particularly I love romantic dramas or even a good romantic  comedy.  Nicholas Sparks adaptations, such as Safe Haven, The Best of Me and The Notebook are amongst my favourite films to watch when having a bad day.  Or, the need of a quiet and relaxing day is a perfect opportunity to discover new films to enjoy20150411_183711
  • Art Therapy: The pain that I experience in my legs has been really bad of late.  So bad that it is hard to concentrate or think about anything else.  A while back, however I remembered an article that I read that discussed the new craze and resurgence of colouring books for adults.  In the article it suggested that the art of colouring-in is very beneficial for relaxing and beating stress and anxiety.  Colouring allows a person to concentrate and escape from their thoughts and daily life in a similar way that mindfulness does.  At the same time, I seen advertising for a new magazine called Art Therapy, which has pages of different patterns and designs for users to colour-in, also including pages dedicated to insights  regarding to mindfulness and relaxation.  Basically the magazine allows for quality time with yourself.  I subscribed almost straight away and after receiving the first issue, I have been colouring during my days of rest and has found it has been a great technique to distract myself from the pain.  It’s also really fun!20150404_182614
  • Pampering!: Nothing like a bit of pampering to relax and give yourself some self-love.  If I am feeling down or had a bad week, then I love nothing better than to use one of my luxurious nail kits and paint my nails.  Whilst Mum and I were in Bath, and my pain was bad, she went into the local Lush store and bought me a Massage Bar which includes an oil which has been shown to increase serotonin levels in the brain.  A great way to give yourself a little pampering and lift your mood at the same time!20140920_165005
  • Create a happy and relaxing playlist: Music has been shown to have a positive effect on mood and well-being.  And I love music and have songs on my iPod that triggers a special memory or instantly makes me smile.  So, why not create a playlist of happy and uplifting songs to put on your MP3 player for when you need a pick me-up, or relaxing and chilled music for the times you need to unwind and recharge.
  • Create a Comfort Box: I have written about the concept of a comfort box in previous posts.  But simply, a comfort box is a box that you can fill with things that brings you comfort, joy and relaxation.  Ideas to put in a comfort box include craft kits, pictures of happy times, favourite books, films or television boxsets.  Other examples include scented candles, favourite snacks or even a journal.  The comfort box can even be placed under or near your bed so that it can even be of use when stuck in bed due to chronic illness.

    Inside view of Comfort Box
    Example of a Comfort Box
  • Spend time stroking your pet: Take time stroking a pet (if you have one) as research has found that doing so can lower your blood pressure, helps the body release a relaxation hormone, and even helps cut down levels of a stress hormone.  And it has beneficial effects for the animal too!
Pin It