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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 20th April: Travel Time 

If you could travel anywhere in the world, where would you go and why?  Maybe you’ve already traveled to an exciting place and want to go back.  We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!

“Don’t float through life, make waves…”
– unknown

Travelling has never been an activity that I have particularly enjoyed.

I am very much a home-bird; never happier when I am at home surrounded by the comfort of the familiar.  Packing for holidays has also been something that I have found stressful, with my parents constantly barking at me to get everything I am taking with me ready, and then asking if there is anything that I have forgotten!

As my condition has steadily worsened over the years, holidays, as a result, has not been a priority and therefore have stayed with family whilst my parents have gone on holidays including a trip to Canada, and their first cruise to celebrate their thirtieth wedding anniversary.

The debilitating symptoms and love of the familiar are not the only reasons why travelling is just not my bag.  Living with a long-term condition in which the symptoms fluctuate, and as a result makes life very unpredictable.  Life with a chronic illness is often extremely unpredictable, never knowing how we are going to feel from one day to the next, and never knowing when symptoms are suddenly going to appear.  And it’s this unpredictability therefore that makes travelling particularly difficult and daunting also.  As my condition, and particularly the dizziness and vertigo worsens in buildings with high ceilings, such as airports, for example, flying abroad is also very problematic and therefore has prevented me from being able to travel.  Because of this it just seemed easier not to travel and instead enjoy the sights on one’s doorstep as an alternative to travelling long distances.

However, two years ago and after experiencing difficult times as a result of the neurological condition I live with, my parents decided that we were all in need of a relaxing holiday and away from the stresses of illness, hospital appointments as well as those experiences in everyday life.  And somehow, they talked me around to going on a Mediterranean cruise visiting France, Italy, Spain, and Portugal.

This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extroadinary beauty of my surroundings
This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extraordinary beauty of my surroundings

All my research assured me that this type of holiday was ideal for those with disabilities or chronic illnesses; not only is cruising extremely relaxing but also has the benefit of having your cabin close by for when symptoms appear out of the blue and suddenly being taken ill.  Cruise ships are also fully accessible if a wheelchair is needed, and unlike air travel, there are no long waits or delays at airports, so much less stressful than flying to holiday destinations!

Regular readers of the blog will know about the trip which I wrote about in a past post.  The cruise was difficult for me due to a sudden deterioration of my symptoms which occurred a couple of months before the start of the holiday. As a result, I was unable to get off the ship at the different ports and go on the excursions.  Most of the holiday was either spent in the cabin reading or sleeping, or in the solarium relaxing, in the attempts to ease the excruciating pain in my legs.

Despite this, however, this year I am once again going on another cruise, even going on the brand new Royal Caribbean cruise ship, Anthem of the Seas!

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A lot of you, are probably wondering why I would choose another holiday after my first experience last year.  Well, yes, the holiday did not go as plan and was left unable to do many things that I was looking forward to before leaving due to severe and debilitating symptoms, but that did not mean the experience itself was awful.  We needed a holiday to relax, unwind and switch off from the stresses of everyday life, which despite the pain and other debilitating symptoms affecting the holiday, I still managed.  The cruise was not an awful experience, and there were plenty of moments that I thoroughly enjoyed (such as dressing up) during the trip.

Furthermore, I thoroughly believe that we cannot let one bad experience put us off from trying again.  Just because I experienced a relapse in the debilitating symptoms last year before and during the cruise, does not mean that the same thing will happen this time.  This cruise will be my second, and therefore will be easier, as I am more aware of what the experience will entail and am able to put actions plans into place for when symptoms arise or when I am suddenly taken unwell.

In addition, the last holiday also helped me realise the need for a break from seeing the same four walls every day and the same routines we live out; the cruise was a welcome break from constantly being stuck in the house, or held up in my bedroom due to severe symptoms.

It was an opportunity to see new sights and experience things that I could never encounter at home.

Photos from Royal Caribbean Blog

This time around, however, we will be cruising around the Canary Islands and visiting ports in Spain and Portugal also.  It again will be a welcome respite from the stresses of living with a neurological condition, and endless medical appointments, as well as the opportunity to absorb plenty of vitamin D with its many health benefits.

With the first cruise on the new ship being imminent, and therefore being inundated with photographs of the beautiful decor and the many new activities to experience onboard via social media, I am beginning to get very excited about our cruise in September.   I am determined to forget about the disappointments caused by the previous cruise, and even more determined to enjoy and soak up as many new experiences as possible this year.

What about any tips that I could offer for travelling with a chronic illness?  There are plenty that I could offer after my experiences last year but here are some of my top tips:

  • Let the travel company know of your medical condition and any help that you may need.  When booking a cruise, or booking a hotel room, book a wheelchair accessible cabin/room, if a wheelchair is required for the holiday (it may be best to hire one if you do not own your own especially if symptoms such as fatigue is a problem).
  •  Carry all your medications and other necessary items with you in your carry-on luggage.  When cruising, your luggage is taken from you after arriving at the port and you do not see them again until you are in your cabin.  However, with a lot of passengers, onboard delays can occur so any important items are best to pack in your carry-on luggage.  Also, include items such as swimsuits too so you can make full use of the amenities as soon as you are onboard.
  • Expect the best but prepare for the worse.  Chances are, you may not be able to participate in all the activities and trips during the holiday.  So, as a result, prepare for some quality time by yourself in the cabin or hotel room.  Bring books, audio books, MP3 player or anything else you can do to keep yourself entertained whilst resting.  Wi-fi may not be available so perhaps try downloading some movies before you leave in preparation
  • Don’t overdo things.  It can be so easy to get carried away on holiday, and push your limits to keep up with everyone else, but don’t forget to listen to your body and take a break if you need to, because if you don’t you may pay for it later
  • Prepare yourself mentally for leaving and accept your limitations. Experience has taught me that you need to know your limitations and accept them before you leave, as chances are, you will not be able to do everything that you want during the trip and it’s best to accept this before you go and instead of worrying or getting upset by it, instead make the most of everything that you can do and enjoy them
  • Have a great time!

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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:

Travel Time…If you could travel to anywhere in the world, where would you go?  Why?  We also know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!

This particular prompt is a very interesting one for me, as in just over two weeks I myself will be going on holiday!  Yes, I am due to go on the first holiday I have had for a number of years.  The prospect is both very exciting and nerve-wracking.  This is the first holiday since my diagnosis of my neurological condition, and in addition is the first time I will be travelling since my symptoms have become worse, such as the mobility problems I live with as well as the worsening of the dizziness and vertigo.

My parents and I are going on a cruise with Royal Caribbean, sailing on one of their magnificent ships ‘Adventure of the Seas’ departing on May 8th.  The cruise is to travel around the Mediterranean visiting places such as Cadiz, Barcelona, Nice, Livorno and Rome.  I am particularly looking forward to visiting the places in Italy, as it is a country that I have wanted to visit.  I love Italian food, and think the language sounds beautiful.  It is a place full of history, a subject that I am interested in, and the architecture of its building are spectacular.

The beautiful cruise ship that I am about to depart on for my adventure around the Mediterreanean
The beautiful cruise ship that I am about to depart on for my adventure around the Mediterranean

I will admit that after I was diagnosed with the neurological condition, and since the symptoms that I constantly live with worsened I thought that I would never get to visit the sights in Italy that I had wanted to visit since I was young.  For example, I am unable to fly as due to my dizziness I would not be able to handle being in airports for a considerable amount of time because of their considerable size and high ceilings.  There are several local bus companies that do offer trips to Italy, however since the pain in my legs has worsened during the past couple of years, we ruled that option because of the likelihood that being in a bus for a long time without being able to stretch my legs would worsen the pain in them considerably.  So, the only option left was to go on a cruise.  At first, I was very skeptical as I was certainly worried that the dizziness would worsen due to the movement of the ship.  However, as both my parents have been on a cruise before, and eased by concerns and anxieties about cruising as well as listing off a large number of benefits of going on a cruise versus other types of holiday.  And by agreeing then I would be able to choose a cruise that would allow me to fulfil my dreams of visiting a place I had wanted to for so long.

The beautiful city of Rome which I will soon be experiencing
The beautiful city of Rome which I will soon be experiencing

After mulling it over, I agreed and took the plunge by booking the cruise we are to depart on in a couple of weeks.  The countdown now is most certainly on and I am busily preparing for the cruise and purchasing new clothes and bits and pieces that I need to take with me such as sunglasses, hats and other holiday necessities.  Another necessity that I have to take is my wheelchair; due to the neurological condition I am unable to walk far and therefore will need it to use on excursions and around the ship so I will be able to enjoy everything I want to experience.  Granted, I never dreamt that if I ever got to visit Italy I would do so in a wheelchair but sometimes dreams do not turn out the way that we expected.  I have decided to pack some items that are my personal necessity items such as my iPad – before leaving I will download some films that I will be able to watch on the days where I may be feeling very unwell and am stuck in our cabin due to the severity of my symptoms.  This may not happen, of course, but I thought I would prepare for the possibility that it could happen.  I am planning to watch a film or two on the journey to Southampton in order to distract myself from the pain and trembling in my legs that has worsened recently and may also worsen whilst travelling in the car due to the lack of leg room.  A notebook of course is another item that I will be taking with me; an item that will be very useful in taking notes for the blog post that I will be writing when I return home.  And of course, no holiday would be complete without a camera to document the experience of travelling to new places for posterity.  For this, I am planning to take as many photographs as possible with my smartphone, and then I am planning to build a scrapbook of my cruise experience as something to look back on when I am having a bad day due to chronic illness.

This particular prompt also asks for tips for others regarding travelling with a chronic illness.  However, as I have mentioned at the beginning of this post, I have not travelled since being diagnosed with a neurological condition, or not taken a holiday since the symptoms associated with my condition has worsened.  Therefore, I would like to make this particular post interactive and ask my readers (aka YOU!) for their tips regarding travelling whilst living with a chronic illness?  What are some of the items I should be packing in my luggage?  What are some of your coping techniques when your symptoms flare whilst travelling?  Any tips that you can offer would be much appreciated and would love to hear others’ experiences of cruising with a chronic illness or even better a neurological condition.  So, please leave any tips and suggestions in the comment section below:

I look forward to writing a post about my holiday of a lifetime and sharing my experiences and tips that I may have found whilst travelling with a neurological condition.

Welcome again readers. Today, is the 20th April…which means it’s the 20th Post of the WEGO Health Activist Writer’s Month Challenge.  And the prompt for today reads:

Miracle Cure…Write a news-style article on a miracle cure.  What’s the cure? How do you get the cure? Be sure to include a disclaimer!!!

Again, this prompt has been somewhat of a challenge for me – as my condition is due to a lesion in my brain stem, there is obviously no treatment, nevermind any cure that can be offered to reverse the damage that has already been done.  However, have managed to come up with a miracle cure for one of the many symptoms that I constantly battle with on a daily basis – spasticity…

SPASTICITY, NO MORE!! NEW DRUG IS FOUND TO RELIEVE THE SYMPTOMS OF SPASTICITY

Written by Rhiann Johns

Spasticity is defined as an “involuntary muscle stiffness, characterised by increased muscle tone and exaggerated reflexes”.  As a result, patients exhibiting spasticity report that the affected muscles feel stiff, heavy and difficult to move, and is often found in neurological conditions such as multiple sclerosis (MS), Parkinson’s Disease, Huntington’s Disease and Cerebral Palsy.  Spasticity although the effects can be mild to severe, can interfere with normal functioning, causing difficulty in walking as well as leaving sufferers in severe pain and discomfort.

However, a new drug called Tiptrimax, which is administered by an injection in the affected muscles have found to be highly effective in treating spasticity, with many sufferers reporting their spasticity being greatly reduced after several weeks of taking the drug. One patient reported “I have noticed a significant reduction in the number of spasms that I experience, as well as the amount of pain the spasticity often leaves me in.  My legs seem to be much lighter now, and walking and other movements in my legs seem much easier.  I feel I will now be able to enjoy a more fulfilled life thanks to Tiptrimax!”  This drug is certainly a miracle for me.  I cannot wait to be able to take long walks with my dogs and exercise like I used to before MS came into my life.”

The UK drug regulators NICE (National Institute for Health and Clinical Excellence) have now fully approved the drug and will be available to all patients exhibiting spasticity by September.  It is said the drug can only be administered by a nurse or other healthcare practitioner once a week into the affected muscle areas.  The long-term effects of taking the drug are unknown but there have been no reports of any lasting or significant side effects.

***DISCLAIMER:  THE ABOVE ARTICLE IS ENTIRELY UNTRUE AND ONLY WRITTEN FOR THE 30 DAYS, 30 POSTS CHALLENGE FOR WEGO HEALTH HAWMC.  THE DRUG MENTIONED DOES NOT EXIST

So, that was my fictional miracle cure article for today’s prompt.  Hoped you enjoy and again please feel free to comment below…

Until Tomorrow…

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