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HAWMC Day 9: Getting out of the Comfort Zone

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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 9th: Challenger 

Share with readers about a time you had to overcome a daunting challenge.   What words of encouragement would you share with others who find themselves facing similar difficulties?

The last daunting challenge that I had to face, and one of the biggest challenges that I’ve faced for a long time, was our holiday in May of last year.

The holiday was a fifteen-night cruise around the Mediterranean Sea, visiting ports including Cadiz, Barcelona, Livorno (Florence) and Civitavecchia (Rome).

Not only was the first time that I was to go on a cruise, but it was also the first holiday I would have been on, since the deterioration of my symptoms such as the dizziness and weakness in my legs.

The magnificent ‘Adventure of the Seas’

I mentioned in a recent post, about the anxiety provoked by going to new places or experiencing anything new can be for someone living with a chronic illness.  Not only do visiting or experiencing anything new raises a lot of ‘what if’ questions (What will I be like?  What if I become ill? for example) but as chronic health conditions often flare, we therefore do not know how our conditions are going to be around the time we are away.

Furthermore, as someone living with a chronic illness, familiarity is comforting.  Being surrounded by everything that is familiar is comforting; they hold special memories, and know familiar places like the back of our hands and if we become ill we know exit strategies or places easily accessible to recuperate until we feel better.

We may be missing out on incredible adventures and challenges if we don't push our comfort zones
We may be missing out on incredible adventures and challenges if we don’t push our comfort zones

Being out of our comfort zones, therefore is uncomfortable and scary.  The fear of the unknown is overwhelming.  And this is exactly how I felt for days leading up to the cruise, especially as I was also experiencing a bad time with my symptoms at the time.  There were times, I admit that I really didn’t want to go, but looking back, I was so glad that I did.  Here are some words of advice and encouragement that I would give for anyone in the same position:

  • Talk through your fears and worries with somebody else, preferably someone going with you on the holiday (or whatever situation you are in).  Our minds will very often catastrophise things, and these thoughts often become out of control when we bottle them up.  So, talk through the worries and anxieties with another person and then talk through coping strategies and action plans for various possible scenarios
  • Make an appointment with your GP and ask for some extra medication to see you through the holiday.  I was so glad that I did, as because I was experiencing a sudden deterioration in symptoms, the doctor prescribed me some extra medication for the worsening pain which really helped during the cruise and helped with sleep
  • Do not focus on what you cannot do, but enjoy and make the most of what you can and what you enjoy!  On the cruise, as I was feeling so bad for the majority of the time, I found that I was unable to do things that I was looking forward to such as getting off the ship and visiting places like Rome and Florence.  At the time, however, I spent so much time being upset and frustrated at not being able to do it, that I forgot to enjoy the little things that I was able to do, such as the relaxation and pampering in the solarium and using the wonderful facilities such as the jacuzzi, which really helped to ease some of the pain
  • Relax and enjoy!  Holidays are all about resting and relaxing (in my opinion), and everyone has different ideas on what this entails.  If this means, lying on sun loungers all day, or reading by the pool then do it!  Don’t compare your holiday experience with somebody else.  Make the most of what you are able to do.
  • Feel the fear and do it anyway!  If there is anything that I learnt during the daunting challenge last year, it was definitely to worry less and enjoy it more.  Going on holiday with a chronic illness is challenging, however, it is also very worth it.  It allows not only a break from the ‘spoonie’ routine of doctor and hospital appointments but also allows a welcome respite from the confines of the four walls of our homes where we spend a lot of our time.  So, just go and make wonderful and lasting memories to cherish for many years to come!
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HAWMC Day 8: A Reflection of Me…

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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.

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HAWMC Day 7: World Health Day

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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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HAWMC Day 6: Actress, Humanitarian and Health Activist

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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.

Monday April 7th: Your Hero 

Everyone has someone they look up to – a person they go to for advice, an individual you admire or idolise.  It could be your partner, a family member, coworker, or someone famous.  Who are they and what makes them awesome in your eyes?

This is a tough question.  I am surrounded by a lot of amazing and inspirational people, many of whom I look up to and admire – my Mum, my friends Aisha, Anya, Hayley, Claire for examples.  It was hard to choose between these fantastic people, and so instead I have opted to discuss a well-known celebrity whom I both respect and admire.

Angelina Jolie.  A woman who has many facets to her personal identity – a wife, mother, woman, actress, UN ambassador, and now health activist.

Angelina Jolie should not only be admired and respected for her incredible acting career, not only playing iconic characters such as Lara Croft and Maleficient, but also won many accolades for her performances in films such as Girl Interrupted, Changeling and Gia.

Angelina Jolie in one of her most famous roles, Maleficient
Angelina Jolie in one of her most famous roles, Maleficient

However, it is her work off-screen why she has become a woman many have become to respect and admire.  Her extensive work as a humanitarian, and US Ambassador has taken her to many countries around the world, witnessing the devastating effects of conflicts and natural disasters.  She has met many people who have been affected by such events, such as refugees who had been displaced due to conflicts in counties including Sierra Leone, Tanzania, Cambodia, Syria and Iraq.  Her work has also seen her meeting and helping those who have been personally affected by natural disasters, including earthquake victims in Haiti.  And her recent work, and visits to places such as the Congo with MP William Hague helped raise awareness about the use of rape as a weapon in conflicts which included a passionate and inspiring speech at the 2013 G8 Summit in London.

Angelina Jolie, the UN Ambassador
Angelina Jolie, the UN Ambassador

Her work however has not just included helping highlight the effects of events such as war and natural disasters, but the selfless and inspiring woman has even set up and financed many charitable organisations including the Maddox Jolie-Pitt Foundation which is dedicated to community development and environmental conservation in Cambodia, where her eldest son was born and whom inspired the charity.  She has also helped fund projects which helps to fund education for those children affected by man-made or natural disasters, and those organisations committed to providing legal aid for immigrant children living in the United States.

However, it is  recent events in Angelina’s private life which have really helped win the affections of many around the world.  In 2013, Angelina Jolie revealed to the world that she had undergone a double mastectomy due to an extensive family history of both breast and ovarian cancer and having learnt that she had the BRCA1 gene mutation that dramatically increases a person’s chance of developing cancer.  In an essay for the NY Times, Jolie wrote candidly about her decision to undergo the double mastectomy and hinted at a future operation to remove her ovaries (which she underwent earlier this year).

Not only was she incredibly brave about openly discussing her decisions for undertaking such radical measures to prevent her risk of developing breast and ovarian cancer but in doing so has helped, and will help many women going through the same reality that she was.  In the piece for NY Times, Jolie encourages women to take control over their health issues, whatever they may be, and to seek advice, learn about their options and make the decision that is right for the individual.

In her piece, she writes ‘knowledge is power’.  And it is this principle that is popular among many health activists and those  working within the self-management field.  Self-management enables and encourages patients living with a long-term health condition to take a pro-active role in managing their own health and well-being.  It is an area within the healthcare field which puts the control back into the hands of the patient.

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It may however be a field in which not many patients are aware of; many report not knowing where to seek out information regarding their own health and well-being and as a result may still look to their healthcare professionals to give out information and advise them on the right course of treatment for them.

By speaking out so openly and honestly and encouraging everyone to be proactive and take charge of their own health, then it is perhaps more likely for it to happen, as history suggests.  For example, after Jade Goody spoke out after her cervical cancer was diagnosed as terminal, the number of women opting for a cervical smear, which detects it, increased dramatically.

For Angelina Jolie to use her celebrity status for good and a positive influence for many makes her a true heroine in my eyes.

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

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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:

  1. 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'
    The magnificent ‘Adventure of the Seas’
  2. 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.
  3. 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.BCCY6Z7CcAA0Q7e
  4. 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
    It’s more satisfying shopping in-store than relying on the internet
  5. 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!

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