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In Chronic Illness

HAWMC Day 19: Defeating Stress

April 19, 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.

Sunday 19th April: Stress Awareness Month

What’s the best way you deal with stress? How do you like to let loose to escape common stressors? Share with us your favourite ways to shake off the stress

Stress is defined as “the physical, mental or emotional factor that causes bodily or mental tension”.

Stresses can be external (from the environment, psychological, or social situations) or internal (illness, or from a medical procedure for example). When these stresses are triggered, it initiates a complex reaction of our neurologic and endocrinologic systems also known as the ‘fight or flight’ response, in other words, our body prepares us to either fight the cause of our stress or run away from it.

no-stress

Everyone is susceptible to stress and is something that everyone will experience many times during the course of a lifetime. It can be caused by anxiety over exams, financial problems, family arguments to name but a few examples.

Chronic Illness Cat understands that stress levels can increase when living with a chronic illness

Furthermore, everyone is susceptible to the effects of stress. However, living with a long-term health condition makes you particularly vulnerable. In addition, to challenges that are normally faced, chronic illness can provide new stressors, including:

pain or discomfort from symptoms
managing the condition and coping with the treatments
adjusting to the new limitations that are caused by the condition
feelings of frustration loneliness and isolation

There are several strategies that they suggest to increase the quality of life for those living with chronic conditions and to minimise the challenges that go with living with a long-term illness, such as:

Self-Management: Making positive conscious decisions to help ease the symptoms experienced and to improve quality of life. These include the choice of eating nutritious foods, getting plenty of sleep and exercise, all of which can help improve mobility and ease symptoms as well improving mood and lessening the effects of stress
Developing adaptability: By accepting your condition and the limitations that arise as a result can allow you to take control of the condition as well as allowing you to develop coping strategies that work for you. And by doing so also allows you to better manage any new challenges as they arise
Understanding the condition: It’s always helpful to learn everything about symptoms and treatment options. It’s also helpful to observe your body and learn any triggers that exacerbate the symptoms as well as those which ease the symptoms as they will not be the same for every patient. Use a journal to record the insights that may help you manage the symptoms.
Managing emotions: Experiment with different strategies to manage stress and other negative emotions. Find the strategies that work well for you can incorporate these into your daily, or weekly routines.

What has worked for me? These are some of the strategies that I have found particularly helpful, and not only for stress management but distracting me from symptoms such as chronic pain:

Listening to music: When I am stressed or experiencing excruciating pain then I like to press play on a playlist of my favourite songs and listen to them whilst lying down on my bed with my eyes closed and focusing on the positive, inspiring and uplifting lyrics
Breathing and relaxation exercises: As someone who experiences anxiety as part of my condition, or when I am experiencing insomnia I find breathing and other relaxation techniques very useful to help. It is important to regularly practice these types of techniques, as they are much like muscles which need to be worked on to be effective. And after practicing these techniques I usually feel so relaxed that sleep comes very naturally!
Colouring-in: A new technique that I have discovered, yes, it’s no surprise children are so relaxed as colouring books really help with switching off the brain and helping us to unwind from the stresses in our lives. Although, I have been using it as a distraction technique to manage the pain I have been experiencing, which is helping and is an activity I am very much enjoying!
Puzzle Books: These are another great distraction technique from stress, anxiety, and pain. The concentration needed to complete them is a welcome break from worrying about the little stresses in life, or about the troubling symptoms. My recent favourite puzzle has been the codebreaker – what is yours?
Painting Nails: If am feeling low or particularly unwell, painting my nails with a bright, bold colour always cheers me up, and as someone who suffers from shaky hands I also need a lot of concentration to do a good job and in doing so any pain or stress that I may be experiencing is forgotten!

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In Chronic Illness

HAWMC Day 18: Here Comes the Summer!

April 18, 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.

Saturday 18th April: Summer is Coming

What are the 3 things you look forward to the most in summer? Whether it’s the travel, the weather, family cookouts, or another activity, share with your readers why you’re excited for the summer!

It’s fast approaching the end of April, and as we enter into May we are ever nearing the start of Summer.

Hopefully, like last year we will be immersed in months of glorious sunshine and warm temperatures.

Summer is the probably the favourite season for most people if asked. Living in the UK, and experiencing long and miserable winters, the summer, therefore, provides a welcome respite from the grey clouds and rain.

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With grey clouds overhead everything can look bleak and depressing. In the summer, however, the same scene can look beautiful cast in dazzling sunshine and bright blue skies. Also, if you ever notice being out and about during the winter, everyone seems in a rush; dashing in shops and buildings to escape the rain. The same people during the summer, however, are much less hasty during their walks, taking their time whilst enjoying the feel of the warm sunshine on their skin.

Furthermore, in my personal experience, and depending on whether the temperatures do not get too high, I find that the chronic pain that I experience as a result of spastic paraparesis eases slightly during the summer months compared to the excruciating pain that the very cold temperatures during the long winter months cause. Taking part in activities such as swimming also helps relieve any pain and discomfort that I do feel, and there is no better time of year to do said activity than the summer.

Look at that view basked in beautiful sunshine and blue skies filling the sky. Bet it wouldn't look half as beautiful when there are grey skies! — Look at that view basked in beautiful sunshine and blue skies filling the sky. Bet it wouldn’t look half as beautiful when there are grey skies!

A few months ago, I wrote a blog post about the reasons to love winter. Not an easy article to write, and often felt that I was taking the reasons for hating the season and putting a positive spin on them.

I have the opposite problem with writing this post about summer; there are so many reasons for looking forward to summer, that choosing only three is extremely difficult!

Here are my reasons for loving summer:

Summer Fashion: Although I love my winter wardrobe as mentioned in my post on the reasons to love the season, with the chunky knits and thick, comfortable leggings, I prefer the summer fashion with all the bright colours such as orange, yellow and pink, all of which to me represents happiness. I also adore wearing maxi dresses and white trousers, all fashions that look lovely and fresh during the summer months! Recently, going shopping and noticing the new looks for summer, with the bright colours everywhere in the shop looked cheerful. And the swimwear collections, reminding us that holidays are also looming
Good Times: The choice of activities during the winter months can be quite limited in part due to the changeable British weather. However, if you are a person who likes to be busy and active, you are certainly spoilt for choice during the summer, as there is so much to do. Summer fêtes, open-air theatre productions, outdoor concerts and music festivals to name but a few. Tourists besiege the popular destinations, making the summer feel like one long party. With so much to do and the fact it’s light early in the morning, and the days are long, we get to see much more of our friends and families, enjoying barbecues, picnics, playing games and gossiping until late. Making memories that will last forever.
Nature: There are lovely natural sights to behold during the summer months. Beautiful, bright butterflies fluttering around. Dazzling, exquisite flowers in full bloom. The smell of freshly cut grass. The sound of birds chirping. Everything feels alive and exuberant during summer!

There must be something special about summer, I mean even a snowman wants to experience it!

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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