chronic illness Archives – Page 28 of 61

In Chronic Illness

HAWMC Day 17: A Slogan of Hope…

April 17, 2015 No Comments

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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.

Friday 17th April: Health Tagline

Give yourself, or your patient experience a tagline. Grab attention with your slogan. Make sure it’s catchy!

To come up with a tagline to encapsulate the patient experience or life with chronic illness is extremely onerous. There are many facets to life with a long-term health condition; some good and some bad. How on earth could we summarise everything that we have to face every day in just one sentence?

If we could turn back the clock and given some medical literature about our condition, what would we want the tagline of the pamphlet to be?

I know after, I was given a diagnosis of a long-standing brain stem lesion, my thoughts were consumed on the long-term aspect of the condition. My thoughts were preoccupied with knowing that my life will never be normal again and that no amount of medications will eliminate the symptoms caused by the neurological condition.

Therefore, I would want to read a slogan that could alleviate the fears of being diagnosed with a long-term condition, as well as providing hope that although life will be forever changed, and certain aspects of our lives might be lost, there are still plenty to look forward to and experiences that we can still take part in, and so on. My slogan would envision hope and positivity despite the unclear outlook for the future. Also, as my neurological condition is rare, and therefore any support for a condition like mine is non-existent, I wanted a slogan that is inclusive; a slogan that encompasses everyone living with a chronic illness, regardless of the diagnosis.

A friend was recently struggling herself due to her own diagnosis, and wanting to do something nice for her, during her time of need, I sent a card and letter. In the letter, I wrote “Rainbows and sunshine can still be found even in the darkest of times“, and so I would choose this as my slogan. I know the tagline does not specifically relate to me, or my patient experience, but it does cover something that we all need at times – and that is hope. Hope for a better tomorrow.

A Slogan of Hope for anyone living with a chronic illness

In Chronic Illness

HAWMC Day 16: A Focus on the Present…

April 16, 2015 No Comments

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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.

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.

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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

In Chronic Illness

HAWMC Day 15: The Joy of Letters

April 15, 2015 No Comments

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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.

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

In Chronic Illness

HAWMC Day 14: Trying to take on the world…

April 14, 2015 No Comments

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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.

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

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.

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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.

In Chronic Illness

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

April 13, 2015 No Comments

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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

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!

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.