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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
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
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.

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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.

Today’s prompt reads as follows:

Why I write…Tell us why you write about your health.  How long have you been writing?  What impact has it made on your life?  Write for 15-20 minutes without stopping.

Why do I love to write about my health and my life with it?  Well, for starters I would like to think that writing is something that I am good at; when living with a health condition, particularly one which is rare and unusual it is therefore only natural to want to raise awareness of the particular condition with which you have been diagnosed.  For some people, raising awareness may involve organising events, or even speaking in public regarding their life and their condition.  However, as I am an introvert and extremely shy, I therefore do not feel comfortable with public speaking and feel much more comfortable in expressing my thoughts and feeling on paper rather than speaking them out loud.  Writing allows me to process my thoughts and feelings regarding my life and the condition that is a large part of it – writing is a very cathartic experience by writing down all my thoughts and feelings, especially the bad.  Writing enables you to process your emotions, letting you to let off steam and providing a safe emotional release from the pain and anguish that often accompanies life with a chronic illness.

Another reason why I decided to start the blog and utilise social media as a part of documenting my journey with living with a neurological condition was to connect with others.  For such a long time, I felt so lonely and felt as if I was the only person in the world experiencing what I was going through and therefore, I reached out to the health community in a bid to gain support that I could be provided with by the medical community.  Friendship and knowledge from others experiencing chronic illness like myself was also something that I wanted to find through the health community as my world had gotten smaller, and as I am unable to get on my own, it is therefore difficult to meet others in real-life.   Furthermore, I also thought that keeping a blog, would occupy my time and give me a project that would help with the boredom and monotony that comes with living with an illness and being stuck in the house for long periods as a result.

writing

But, also I thought it would writing about my experiences with a chronic illness and disability, I could help and do my little bit to educate people on the issues that me and others in a similar situation face.  For example, that not all disabilities are visible.  I have heard  great many stories of people with ‘invisible’ conditions having abuse thrown at them, for example when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces.  This particular anecdote is extremely common amongst those with invisible disabilities, and have even experienced this myself, which I have written about in a past blog post (see ‘Becoming Visible in an Invisible World…’)

 

A fantastic benefit of using social media as a means of communicating about chronic illness
A fantastic benefit of using social media as a means of communicating about chronic illness

Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence of alcohol after he was unable to walk in a straight line when asked to perform a sobriety test.  Therefore, it is important for those, like me suffering from a  chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’  it however does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see.  This reminds me of the many  times when I have gone such as to the doctor’s for an appointment, where I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and looked perfectly healthy.

To conclude, writing and blogging about chronic illness provides an excellent means for an emotional release of the emotions that accompany life with a chronic illness, to connect with others who are living in a similar situation and to educate others’ on the issues that we often face because of chronic illness and disability.

Hello Everyone, me again!  Time for Day 7 of WEGO Health Activist Writer’s Month Challenge.  Today it is up to the Health Activist to choose what to write about.  So, I have decided to have a look at the bonus prompts that were given to us at the start of the challenge:

In a perfect world…Wrote about one thing you wish you could change.  It can be in your own life or the world at large.

So, I though I would choose ‘world peace’ but though that would be too obvious!

As my blog is about my daily struggles with my condition…I would obviously choose to change so that I would not have to endure the daily symptoms or the struggles that I have to face.

It would certainly make my life so much easier, I would be able to have so much more independence and would not be a burden on my parents or family.

I remember when I was younger, approximately 15 or 16 I was so excited and looking forward for the time when I would be able to start driving lessons.  I would imagine how exciting to would be to pass my driving test and then having my own car – being able to take myself off and going where I wanted, anytime I wanted.

In addition, after finishing my psychology degree, I originally wanted to work within the mental health sector, perhaps as a support worker for those suffering with psychological disorders.  However, in recent years emphasis has been placed on community care and away from hospitals.  Therefore, this means that the majority of jobs in the field require employees to visit people at home, and so is now a job that requires being able to drive or at least the ability to use public transportation.

However, due to the condition that I have – and the constant dizziness, as well as the unpredictability of the vertigo and visual disturbances that I experience, it means that I am not allowed to drive as it would be too dangerous for me to do so…and due to the spastic paraparesis, the weakness in my legs, and due to the fact that they very often give way with no warning and I am unable to stand for very long, would make it near impossible for me to be able to use public transportation and walk long distances to visit people in their homes.

Not having this condition, would also make it much easier to be able to make friends – and keep the ones I have made.  This condition, and the dizziness that I have endured for so many years, have made it so difficult to make and keep friends.  At school, I was often ostracised from my peers as many often thought I was strange.  And even at university when I did make friends, they have not stayed in contact, although I do not know the reason why, it more than likely is due to my condition due to the fact that the dizziness makes it very difficult for me to go out to places, such as large shopping centres or to nightclubs due to the way that they make me feel and how they can bring on episodes of vertigo.  Unfortunately, these places are incredibly popular with my age group and where most people my age want to go when going out with friends.

I have tried to make contact with those who I were closest to at university but none have made contact… So, it seems at the moment I lead a very lonely existence, sure I have my parents, but would be nice to be able to spend time with other people, or even people my own age.

It also incredibly difficult leading a normal life with the spastic paraparesis…especially as I am unable to stand for very long – no more than around 10 minutes,  This obviously causes a problem when thinking about going shopping, hence the reason why I still live at home, as Mum and Dad are able to do the majority of chores such as food shopping, and the like.  And if I do go out then I have to take regular breaks, such as going for a drink so am able to sit down – making it an expensive trip out!!

Also, causes a problem with being able to perform chores effectively – I have to regular breaks and sit downs when I have chores to do, making it take twice as long to do.

Therefore, I would choose to change the dizziness and spastic paraparesis so I would be able to live a normal and more to the point a life that I would want to live….

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