neurological condition Archives – Page 9 of 18

In Chronic Illness

HAWMC Day 8: A Reflection of Me…

April 8, 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 upon given prompts.

Wednesday April 8th: Things Remembered

What is an item you have kept with you that reminds you of an important time in your life? Whether it was a good day, a stressful time, or a happy moment…why does this item remind you of that period of your life?

I have to admit, that I have an obsession over stationary.

Notebooks, journals and pens are examples of the type of stationary that I love to buy, and over the years, have acquired a lot of pretty and beautiful stationary. The blank pages are embellished with my thoughts, memories, experiences and important reminders.

These notebooks are not only a reminder of the good, bad and important times of my life but they tell a story. A story of a girl. A story of a girl struggling with unexplained symptoms, and doctors attempting and unable to find the answers. It charts my story from being undiagnosed to finally having the diagnosis of a neurological disorder. These pages not only charters the factual information from the time, but also contains my personal thoughts and feelings; the disappointments, frustrations, and the tears. But also the relief and hope.

Writing can be a cathatric experience... — Writing can be a cathartic experience…

These journals are not only important for posterity, but for someone living with a chronic illness they are incredibly useful in order to chart life with said illness. By keeping a journal, it makes it easy to look back into the past and track the changes, and any possible deterioration in the symptoms that I endure on a daily basis. Often when doctors ask us, about our experiences with our symptoms in the past, it can be difficult to remember, or in the stress of the appointment, we cannot find the words to describe what my pain feels like, or how does the dizziness make me feel for examples. However, by having written documentation of everything regarding my life and experiences I do not have to struggle to remember, or find the words as they are already written in front of me, in my own words about my own life.

Some of the lovely notebooks and journals that know all my innermost thoughts... — Some of the lovely notebooks and journals that know all my innermost thoughts…

The journals are not useful in recalling the past in regards to the symptoms associated with the neurological condition I have been diagnosed with, but they are also a wonderful opportunity to reflect on the accomplishments we have managed to achieve despite the limitations placed upon us as a result of living with a chronic illness. On the bad days, in which the symptoms are particularly debilitating, it can be so easy to wallow in misery and ruminate on the limitations and everything that chronic illness has taken from us, but it is on these days that we need reminding of everything we have achieved DESPITE chronic illness.

My journals mention all the accomplishments that I have managed since receiving the diagnosis of a neurological condition – going to places that I have not been able to go for many years, and staying out despite experiencing severe symptoms, going on a cruise to name but a few. And it is these accomplishments that I still have managed to achieve despite my condition and its symptoms getting worse. They are reminders that a great life can still be found even when experiencing difficulties which are out of our control. They are also a great motivation on those bad days, or when negative thoughts continue to plague our conscious thoughts.

These notebooks and journals are important items that I own, not only because they are mine, but also it represents everything about me – my story, my life and my own words.

In Chronic Illness

HAWMC Day 7: World Health Day

April 7, 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 upon given prompts.

Tuesday April 7th: World Health Day

April 7th is World Health Day – so let’s talk about daily nutrition and diet. After your diagnosis, did you alter your diet or health routine? If so, how so? How do you maintain a health regiment?

Water. Leonardo di Vinci, famously said that “Water is the driver of nature.” Drinking plenty of water and keeping well hydrated is vital for a healthy functioning brain and nervous system. Therefore, when living with a neurological disorder, hydration and proper nutrition are not only critical to sustaining health but can also prevent a progression of the condition, or worsening of symptoms.

After being diagnosed with a neurological therefore, I take steps to ensure that I drink enough water throughout the day and even downloaded an app for my phone to remind myself to drink a glass of water, as living with symptoms such as fatigue, and brain fog, it can be really easy to forget! And nowadays, water is generally the main beverage that I choose to drink. I have never been one to drink hot drinks, such as tea or coffee, although I do enjoy the occasional hot chocolate for a treat! But knowing all of the benefits of water for not just the brain, but the whole body I am happy drinking it, knowing I am doing something good for my health.

Doctors estimate that we need to drink around 8 glasses of water a day

Since my diagnosis, however, I would not say I have taken huge alterations to my diet or daily health regiment. I have been aware more of my diet and the importance of maintaining a healthy weight, especially as the weakness in my legs, and the other symptoms have made it difficult to regularly take part in cardiovascular exercise. I am now therefore more aware of what I eat, and if we are having a take-away or eating out, then I will choose a dish that is healthy and not overloaded with salt or fat. Recently, I have been opting to eat dishes with chicken, or seafood, especially king prawns, which not only have plenty of protein but are also low in fat.

Over the past couple of years, I have also developed Irritable Bowel Syndrome, which can result in agonising stomach cramps, bloating, and diarrhea. As a result of this new diagnosis, I now have to be careful what I eat, especially for any potential trigger foods. For example, dairy products can often be a trigger for an IBS flare, in particular cream and to have ensure that I ask for any desserts or my order of a hot chocolate not to be topped off with the whipped cream. Luckily, in terms of the IBS, I have found a great friend in peppermint tea, as if a bad flare of the symptoms occur, after a mug or tea of the tea, I often find that the symptoms such as the stomach cramps eases off. Yay for peppermint tea!

Would recommend for anyone with IBS to keep some peppermint tea handy in case of a flare

Exercise, as previously mentioned is often very difficult when living with a chronic illness, due to debilitating symptoms, such as pain, fatigue and weakness inhibits us to be able to do so. However, last year I joined, what is known as a feel-good factory. It is different from a conventional gym, as the equipment there consists of toning tables rather than giving a cardiovascular workout. These toning tables are designed to rebuild muscle strength, tone, improve posture, increase circulation and mobility, just some of the examples of the benefits of the equipment. And as the equipment consists of chairs and beds, I am not at risk of falls due to legs giving way. Although I may not have seen improvements in the muscle strength and tone in my legs, it may be that without regularly working out at the feel-good factory, the weakness may be even worse.

FeelGood Factory in Llantrisant - photograph from their Facebook page — FeelGood Factory in Llantrisant – photograph from their Facebook page

All these steps, may not have had any effect on the symptoms caused by my neurological condition, which is evident by the recent worsening of my symptoms, however by taking small steps in maintaining a healthy regiment such as drinking plenty of water, and eating a healthy low-fat diet I can not only have control over aspects of my health that I can control but also helps to avoid even more health problems often caused by an unhealthy lifestyle.

In Chronic Illness

HAWMC Day 5: No such thing as a small accomplishment when living with chronic illness…

April 5, 2015 No Comments

531000_10150773237874254_36556179253_11327993_607059728_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 April 5th: Breaking News The top story of today is…YOU. Share with your readers your proudest accomplishments in the last 5 years. Don’t be shy, tell us everything!

It often feels that chronic illness robs us of our lives. As a result of the debilitating symptoms we constantly live with, the majority of our time is very often spent inside the safety and comfort of our homes. Sometimes much of our time is even spent stuck in bed. It very often feels that chronic illness is controlling us rather than the other way around. And because of these feelings of inadequacy and grieving over the life we have lost takes place in our conscious thoughts. I know from personal experience, that very often we feel that because of our time spent living with illness, we have not accomplished anything special, especially when witnessing the many accomplishments and big life events of our friends and family on social media. We forget to celebrate the small victories and accomplishments that we achieve without us ever realising it; sure, they may be inconsequential to an outsider, but fellow spoonies and our close friends and family will know how big these triumphs are, especially as it shows our strength at not letting our chronic illness win and dictate our lives. So, as the prompt asks, I am going to share with you all some of the small victories and accomplishments that I have achieved during the last five years:

Going on a cruise – This is probably the biggest accomplishment that I have achieved. A lot of people are afraid of the unknown, but as fellow spoonies will relate, this fear can become worse when living with a chronic illness. So, going on a holiday, and especially a holiday that we have never been on before can provoke worry. What will it be like? How am I going to feel during the cruise? What if I become ill? A lot of questions are raised when going on holiday and a lot needs to be thought of when living with a long-term health condition. But despite the worry and the severity of my condition at the time, I still went on the fortnight cruise and had a wonderful time
The magnificent ‘Adventure of the Seas’
Going to Bath – I am a fan of Jane Austen, so it has been of one my dreams for sometime to go and visit the Bath, a city in which she lived for several years and influenced several of her novels. And last week, I made it there. At the time I was disappointed as the trip to the museum was the only visit I accomplished during the time, Mum and I spent there. The rest of the trip was spent lying on the bed in the hotel as I was too unwell to do anything else. But looking at it positively however, the trip was still an accomplishment as not only had I visited a new city that I had never been before, but I also visited someplace I wanted to go for sometime.
Going to the Cinema – Due to the dizziness, going to places such as the cinema is very difficult for me, as it’s not only due to the extensive sensory overload which can make the dizziness worse and cause vertigo but due to the neurological condition, I am unable to cope with buildings which have high ceilings. However, despite this when the film, Les Miserables came out I really wanted to go and see it as it’s one of my favourite musicals. My carer took me to a smaller cinema, but it was still quite the ordeal and really had to battle against the dizziness and nausea. Somewhere, despite all of this however, I managed to stay and watch the entire film and so therefore this was quite the accomplishment.
Started shopping at Next – Due to the problems with large buildings being able to go and shop in stores located in local retail parks is also extremely difficult, and as a result mostly use online shopping to buy clothes from my favourite store, Next. However, before my cruise last year, I wanted new clothes to take with me. So, once again I pushed myself to go in there, it was not easy and often had to leave the store and go back and sit in the car because of the severe trembling in my legs but the determination I had gave me the strength to try and try again. Now, I regularly visit the store, even if it’s just to look around, and can even push myself to spend more time in there then I previously could.
It’s more satisfying shopping in-store than relying on the internet
Visiting new places – A lot of spoonies, I am sure can relate to the difficulty and worry of going somewhere we have never been before. We spoonies often love the familiar. Going to towns or cities which we know well is far easier when living with a chronic illness as we know where certain facilities are such as the toilet for example. For me, suffering with severely weak legs and dizziness I often need to sit down somewhere quiet, and therefore when shopping in familiar surroundings I know where there are suitable places to take a rest. When going to new places, however, we do not know any of these types of information, so visiting someplace new can cause worry and anxiety but during the past year or so I have managed to push myself to visit new places, which I have throughly enjoyed and although there have been problems such as legs giving way when I have not found any places to recuperate when symptoms flare, I am glad I have given myself the opportunity to experience new places and now have new places I love shopping!

What have been your recent victories and accomplishments? Celebrate them all – even if they seem small and inconsequential! Being a spoonie, even getting out of bed and having a shower is an achievement, especially on a bad day!

In Chronic Illness

HAWMC Day 4: The unpredictability of a predictable life…

April 4, 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 4th April: Creature of Habit

What good habits (health or otherwise) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break?

As someone living with a chronic illness, my obvious morning routine consists of making sure that I take my daily medication to help manage the symptoms caused by my neurological condition.

Routine is something which is defined as ‘a sequence of actions regularly followed.’ Therefore, a routine follows a predictable pattern.

The only thing predictable about living with a chronic illness, however, is the unpredictable nature of our daily lives.

As a result, being able to maintain a routine is extremely difficult as we never know how we are going to feel from one day to the next. We do not know whether our bodies are going to cooperate on that particular day. About my own experiences of living with a chronic illness, due to spastic paraparesis, my legs are weak, and often there are days that I am unable to get out of bed due to the severity of the weakness. When these days occur, therefore any routine and habits that I do follow become impractical.

It is not only the physical symptoms that make it difficult to follow a daily routine successfully, but other symptoms such as pain, insomnia, and fatigue are also obstacles in the ability to maintain a routine. Due to fluctuating pain levels, I often find it difficult to sleep. As a result, my sleep patterns become disordered and out of kilter; finding myself waking early in the morning one day and sleeping in late the next. And fatigue is the most significant hurdle in my opinion as very often you feel too exhausted to be able to do anything besides lying down and watching television!

Regarding wishing, if there were any bad habits, I would like to break, I suppose I would choose to check my phone less! I do check it often, as it often feels that it is my most significant connection to others (through social media) and the world outside my house.

In Chronic Illness

HAWMC Day 2: There is more than one key to unlock happiness….

April 2, 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 upon given prompts.

Thursday April 2nd: Key to Happiness

What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude? Tell us what you think and why.

Happiness is simply defined as ‘the state of being happy’.

The definition itself may be universal but the meaning behind the word is different for every individual. Just like we all have different likes and interests, what makes us happy is different for all of us.

However, modern life has taught us that happiness is contingent upon our accomplishments, and not having any troubles to speak of. On this basis, therefore, a person such as me living with a chronic illness which causes a lot of troubles in my day-to-day life, should not be happy. This is cannot be further from the truth as many of the happiest people whom I have known over the years as had to endure some sort of hardship of some kind.

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“Happiness is a journey not a destination” is a fantastic example of the depiction of happiness in our modern lives; we are so focused on the end result which we think will bring us happiness, we forget however to appreciate the simple day-to-day pleasures. We are too busy rushing around to see the beauty of the world around us.

One of life's simple pleasures — One of life’s simple pleasures

Living with a chronic illness, at times can be exceptionally difficult due to wavering severity of symptoms and the rollercoaster of emotions it evokes. However, I also believe that living with a chronic illness can also allows us to stop within our daily lives and appreciate the simplest of pleasures such as the relief of a warm bubblebath or our favourite song playing on the radio. Chronic illness can cause us to enjoy and appreciate the journey rather than focusing on the destination as many do due to the demands of modern living.

Finding simple pleasures to enjoy and allowing them to bring happiness is just important key to happiness, but as often the door to happiness is often locked to us when we are struggling and experiencing difficult times, there is always more than one key to unlock the door and find happiness on the other side.

One other important key is remaining positive and embracing hope. Surrounding myself with positivity and the favourite inspirational quotes that adorn my bedroom helps to keep the light on during my darkest days and gives me hope for a brighter tomorrow. They are not a miracle cure for the down days that I often experience as a result of living with a neurological condition but they are a reminder that these feelings and the severity of the symptoms at that particular moment, are just that a fleeting moment in a much longer series of moments.

But more importantly, happiness cannot be bought or be given by materialistic objects but by those people we are surrounded by, who give us comfort and support when we are in need of it most and also by the little moments of pleasure that makes life worth living (despite living with a chronic illness).