HAWMC Day 20: Going back on the waves…

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 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 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 of 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!

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 from 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 everyday 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 is 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 before 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!

Cruising and Disability – a perfect match? (Part 1)

Our holiday had started the day before we got on board ‘Adventure of the Seas.’  To avoid the stress of travelling and rushing to get to the port on time, my parents and I drove to Southampton on Wednesday and stayed overnight in a Premier Inn close to Southampton Port.  I will admit that the anxiety levels were high, and did work myself up about going on the holiday.  However, the anxiety was not about the cruise itself, but rather about the reaction of my neurological condition and the symptoms while being on a ship with the constant motion that it brings.  This anxiety was particularly evident before the cruise, the symptoms that I experience have deteriorated with the trembling in the legs increasing in severity, as well as the dizziness becoming much more powerful.  Furthermore, a couple of days before the start of the holiday I experienced a total loss of vision.  Regular readers of the blog will know that I suffered this particular a few months ago. However, I have not experienced these attacks for some time so as you can imagine it was very disconcerting for them to occur right before going away.

Therefore, due to these circumstances, I was very hesitant about going at all, but my parents and a great friend reassured me that I would be fine, reminding me of all the positives of going such as time away from the house where I spend the majority of my days.  Admittedly, the condition is horrible at home, and therefore it would feel the same on holiday as it would at home anyway so may as well take advantage of the change of scenery.  But as many spoonies will you relate, when you are so unwell, and symptoms are severe it’s a real comfort being in familiar surroundings with items which bring comfort on the dark days.  Therefore, that was one of the worries I had – that being in unfamiliar surroundings and away from all of my items that bring me comfort, I would not be able to cope.

The magnificent ‘Adventure of the Seas’

But instead of taking flight away from my fear, I instead I fought against it and on the morning of Thursday 8th May, along with my parents we made our way to Southampton Port and got our holiday started.  It is this part of the holiday that I understand why many disabled travellers prefer cruises to air travel.  The boarding process was easy and relatively quick!  We dropped off our luggage with the porters and parked the car in the long-stay disabled car park, and then carried our hand luggage to the arrivals lounge.  In the arrivals lounge, there was a separate booking area for those people like myself, with disabilities. A desk to check passports as well as for having a photograph taken for your sail pass.  The sail pass is a credit card sized pass which acts as a form of identification throughout the cruise as well as an onboard payment method linked to a credit card.  We then made the short distance along the gangway and then onto the ‘Adventure of the Seas’ for the start of our holiday.  We were on board for approximately 1.30 pm, several hours to explore before the ship was due to set sail for the Mediterranean.

My copy of the sail pass card; the card is used for purchases made onboard as well as used to book on and off the ship thereby acting in a similar way to a passport

Without the hassle of waiting around an airport for hours ready to board, a cruise holiday begins as you step onto the ship.  However, it can take a number of hours to be reunited with the luggage that you left with the porters. Therefore it is advisable to take a piece of carry-on luggage with you containing essential items such as any medications, and perhaps a change of clothes for the evening and a swimsuit so you can take advantage of the facilities straight away.  As we arrived at our stateroom, I was very pleased.

As I was going to be using the wheelchair for the most of the holiday, we booked an accessible stateroom.  Our first choice was a cabin with a balcony, however as all those staterooms were fully booked we settled instead for an inside cabin overlooking the Royal Promenade; a long, open, level area which is home to a series of shops and bars and even offers entertainment on some nights.  So, it might have been for the best as, where our stateroom was situated meant that I had a great view of the parades, and so had the choice of watching them from bed if I wasn’t well enough to attend them on those nights.  Our stateroom was on the seventh deck, and a short walk to the ship’s library – perfect for a bookworm like me!  Advice that I would give if considering a cruise, is to book early to ensure that you can get the type of stateroom that you desire, especially true if wanting a balcony room as they are often the most sought after.  The wheelchair accessible stateroom like ours is 1.5 times bigger than the traditional sized staterooms, with widened doors, a wet room, and a raised toilet.   The only downside for being a disabled passenger is that to ensure an accessible cabin for your trip (they are only a small number available)  you need to book early, and as a result, often miss out on special deals and offers.

The ship itself is beautiful and decadent, and what makes these holidays great is that there are no inaccessible places for those in wheelchairs.  There are plenty of lifts onboard, although they are extremely busy during peak times such as before shows, or prior dinner so if you are cruising with a disability I would recommend arriving at places such as the theatres and the dining room earlier to avoid the crowds of people using the elevators.   If wanting to watch a film in the Screening Room for instance in your wheelchair, then you really need to arrive in plenty of time before the start of the film as disappointingly there is only one wheelchair seat available and so plenty of disabled passengers are often left disappointed when unable to watch a movie.  The ship is spacious and is easy to navigate around the ships as there is plenty of room for both abled passengers and those in wheelchairs to navigate the public areas; the hallways are even wide enough to allow a wheelchair and a person to walk past each other.  Although there were plenty of passengers onboard, it often didn’t feel very crowded, however, which perhaps speaks to the size of the ship.

I would like to thank all of the staff on ‘Adventure of the Seas’ as the majority of the staff were extremely helpful, and spoilt us during our stay onboard.  Our room attendant, Roseanna was extraordinarily lovely, and always stopped to say hello and made us feel special, such as always remembering our names which for the number of people she must look after cannot be easy!  As I spent a lot of time in the cabin, I often saw her as she came into our cabin to make up my bed and every time she asked me how I was feeling and if there was anything I needed, and also had a special nickname for me – Rihanna!

And the food onboard was incredible – the meals were delicious with a variety of choice and most incredibly offering gluten-free or lactose-free varieties on some of the dishes, so those with food intolerances are well taken care of on board.  It was such a pleasure to enjoy a starter, main and dessert every night; a decadence that I am most certainly not familiar.  Starters such as Crab Cake, Spinach Dip and Chilled Pina Colada Soup were among my favourites.  My favourites among the main courses I enjoyed on board was the Asparagus, Peas, Scallops and Crab Spaghetti Pasta and the Ravioli Mare Monte (cheese filled pasta in a crab and mushroom sauce).   The desserts most surprisingly were not my favourite dishes during my time on the cruise but did particularly enjoy the Orange and Almond Cake and the low-fat Peach Melba.

All in all, I felt that being in a wheelchair and going on a cruise was a perfect fit – no hassles in airports with the endless waiting around, and  cruise ships are fully accessible with helpful and attentive staff, I would say it is so easy for a person in a wheelchair to enjoy a holiday in style.

I thought that I would write a little introduction and overview of what is like to go on a cruise with a disability.  In the next post, I will speak about the trip from a personal viewpoint and how I felt on the trip as not only with someone with a disability but also as someone with a neurological condition living with symptoms such as dizziness and issues with balance, etc.  Is there any information that I might have missed out on which may be useful to know, or just would like to know more about?  If so, please leave a comment in the section below…

(Soon to be) Leaving on a cruise ship…

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 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

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.

HAWMC 2013 Day 26: A pain-free pass…oh what a joy that would be!

 

 

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 is as follows:

What’s a day that you wish you could have used a pain-free pass (either in the future or the past)?  How would being pain or worry-free impact that day? 

It is ironic that I should be writing this post on a day when the pain I experience is bad.  Oh, how I wish that I could use a ‘pain-free’ pass for today, although perhaps I would prefer to save the pass for another time; perhaps a time in which a pain-free time would be beneficial.  The group I attend ‘Life 4 Living’ encourages us to write a bucket list – all those little things that we would love to achieve before we die.  Recently, we have had a couple of deaths within the group; which has reminded us how short and previous life can be, and as a result I would love to use a pain-free pass to be able to complete something from my own personal bucket list…

Recently, as some of you may remember from a recent post entitled ‘To Go or Not to Go‘ my parents and I are looking into possibly going on a cruise next year.  It has been my dream to visit Italy for sometime, but because of my health, certain ways of travelling are unsuitable for me, such as flying or travelling by bus for example.  Therefore, going on a cruise is the last option for me to achieve my dream of visiting Italy.

One advantage for sufferers of chronic illness of going on a cruise, which you are unable to get with other holidays, for example, is the times that you become unwell or pain becomes unbearable is that you can go straight back to your cabin with very little hassle.

However, if I were to use a pain-free pass, it would be on day when the cruise ship is docked in Italy itself, especially in Rome and Florence.  Why?  If I were pain-free I would go exploring and go sight-seeing within these beautiful cities without any pain and also the worry that pain will suddenly appear, spoiling the enjoyment of the day and making precious and exciting memories.   I could go and visit the Sistine Chapel; the Colosseum and the Trevi Fountain as well all the other beautiful scenery and architecture within the beautiful city of Rome.  Of course, a day out to a new city is complete with some retail therapy!  And the chance to soak up a different culture; to experience authentic Italian food and ice-cream – and all for myself instead of hearing about others’ experiences of travelling or reading about it in books or seeing the sights on television.  What a dream it would be!

How amazing would that be?  A pain-free day; and a day free of any worries!  A day in which I could spend it exactly how I wanted without the worries that chronic illness often presents in our lives.  A chance to enjoy just a special day with family during a once-in-a-lifetime holiday without my condition getting in the way or spoiling it as often happens during my daily life.  Now, we have to try and make it happen!  Fingers crossed….

What would your ‘pain-free’ pass day look like?  Share your thoughts below and comment!  Always love to hear from readers…

To Go or Not To Go…

Many of us living with chronic illnesses know that often it can rob us of our dreams and aspirations – often assuming that what we used to dream of achieving is no longer within our grasp.  However, this is often not the truth – what may be out of our grasp is the most conventional route of achieving a particular dream; but often when living with a chronic illness, we need to find another route to be able to achieve our dream.

A dream of mine has always been to visit the beautiful country of Italy.  In fact it is on my ‘Bucket List’ that we have complied at my social group which I attend. However, due to my problems with dizziness and vertigo, particularly affected by high ceilings  flying there would not be a good option for me as the majority of airports are very large and have high ceilings – using this transport option would mean that I would be extremely unwell even before getting to the desired destination!

 

Airports – large and high. My idea of a nightmare!

 

Another option would be travelling by a coach; which is one option in which my Mother and I were considering.  However, this was quickly dismissed after a recent trip to the cinema in which I was left in bad pain within my legs due to the cramped conditions, and therefore thought that travelling via coach for many hours would most likely result in severe pain.

Coaches don’t offer a lot of leg room – and for me would leave me in pain

 

Therefore, the only option left to me is a cruise.  My parents went on one a couple of years ago and loved it – really could not recommend it enough.  Although it is only really my last option left to be able to visit Italy; there are however a lot to think about.  Such as the constant dizziness and balance problems.  Would going on a cruise possibly increase the severity of the dizziness, vertigo and balance issues.  People with vestibular disorders often have super sensitive balance – and although cruises have stabilisers and ‘healthy’ people report not feeling the motion of the cruise ship; a person with a vestibular however may feel the motion and be affected because of it.  On the other hand, my balance and dizziness are a result of a neurological disorder and therefore it is interesting to consider whether I would be affected by a cruise in the same way a person with a vestibular disorder would.

A Cruise – good or bad thing with a condition like mine?

 

There are a lot of advantages of cruising for a person with a chronic illness; which really do appeal to me:

• Cruise liners and the companies running them are very happy to accommodate for those with disabilities and chronic illnesses – if you tell them in advance what you need then they will happy to accommodate your specific requirements.  Or if they cannot themselves they will signpost you to places where you will be able to rent certain mobility aids, etc 
• If like me, you are unable to determine when you will become unwell; symptoms appear with no warning then on a cruise you can simply head back to the cabin to have rest or a nap.  If you were on a conventional holiday and out on an excursion you would not be able to do so
• With mobility problems like myself; cruise ships have plenty of elevators that you can use, and if you suddenly get tired, there are plenty of lounges, bars, restaurants or seats that you can plop yourself down on to take a break
• When the cruise liner has reached a particular destination and has docked, if you are not up to go sight-seeing then you do not have to – you can just stay on the ship and relax!
• Plenty to do and lots going on!  I personally like to be entertained and if I am up to it like lots to do – and cruises offer that.  Amenities often include theatres, cinema, spas, swimming pools, ice rinks, and lots more!

I am yet undecided whether I will eventually go on a cruise; there are many factors to consider, and my health being the biggest factor to consider.  Would a cruise be a good fit for a condition like mine?  One thing though, I would love something to really look forward to and be excited about – my future currently offers me more hospital appointments and the same old routine!

What are your thoughts?  Do you suffer with a chronic illness and like to travel?  What, in your opinion are the best types of holidays for those with chronic illness?  Any more advantages of a cruise?  Its disadvantages?

Please leave comments – would love to know your thoughts as ever!

NHBPM Day Sixteen: What would it be to travel with this condition?

A brand new day, and a brand new post for the WEGO Health ‘National Health Blog Post Month’.  Today is the 16th day of this month-long writing challenge; and once again I have chosen to write a post based upon one of the bonus prompts provided.

The topic I  have chosen as you may have guessed by the title is travel.  The prompt asks to write about what it is like to travel with your condition.

Admittedly, I haven’t actually been on holiday for around six or seven years (it’s actually been so long since I have been on holiday I cannot actually remember the year I last went on holiday!).  Instead, I have decided to write a post on some of the challenges, I would face if I were to go on holiday – and if anyone has any ideas on how to overcome these challenges, I would love to hear them, so get in touch via Twitter, Facebook or email, or add a comment to this post!

If I were to go on holiday, my dream holiday would definitely be Italy – I love the food, and it just looks like such beautiful scenery.  I have especially wanted to go and visit the country after watching the film ‘Letters to Juliet’ – especially, as the beginning of the film is set in Verona, which is the place within Italy I would most like to visit, as Romeo and Juliet happens to be my all-time favourite play, and so would love to visit the balcony etc!

Some of the scenery in Verona

So, what about some of the challenges I feel, I would face whilst travelling.  For starters, if I had to fly to go overseas somewhere, it would not in fact flying that would prevent me from doing so, but instead the airports themselves!  If you have been reading my posts, you would know, that I have problems with high ceilings, as they increase the severity of the dizziness, and also increase the incidence of the episodes of vertigo.  Obviously, most airports have high ceilings, so spending time in such a place for approximately 3 hours (not including delays!) would be incredibly difficult for me, and would certainly make me feel incredibly unwell – all before even leaving the UK!!

So, what are the other options – I know that local bus companies offer a holiday to Lake Garda, including a trip to Verona; or perhaps an option would be a cruise?  However, my fear there would be all the motion from the bus or cruise ship would also make me feel very unwell, and could potentially make the dizziness or vertigo even worse.  My balance is incredibly poor on dry land, so i can only imagine what it would be like on a ship!!  Then there’s the weakness in the legs, recently, I was invited to a meeting regarding the introduction of a Life 4 Living group elsewhere in the South Wales area, and was collected by a Social Worker who runs the group in Pontypridd.  I cannot remember how long we travelled for, but it must have been over an hour – and by the time we arrived at the venue, my legs were so weak, and incredibly stiff, and was in a lot of discomfort afterwards.  And this was only after an hour, goodness what I would experience after several hours travelling on a bus.

Another potential problem is the unpredictability of the condition; never knowing which days I am going to be well, or even how I will feel an hour from now.  It would be a shame to spend a lot on a holiday only for me to be laid up in bed for a day or two; it would feel like a wasted trip especially considering the costs involved with holidays.  Often, the symptoms are often exacerbated by fatigue and overexertion (too much walking for example), and very often on holidays, there is a lot of walking involved, whilst sightseeing and many people report feeling fatigued whilst on holiday or immediately after – so what would a holiday do to someone like myself living with a chronic illness.  I would certainly have to use a wheelchair that has been recently been given to me, although before I even think about going on holiday with it, I will really have to learn to be able to get used with using the wheelchair (at the moment I am having trouble adjusting to it – but will save that for another post!) in places that I am familiar to, before going somewhere unfamiliar.

I know a lot of people, often spend holidays lying on the beach or around the pool at the hotel they are staying in, but that has never really been me – I have always preferred to go out and soak up the atmosphere and culture of the place where I am staying.  I love to go and experience local museums, art galleries, or other tourist attractions – I would much prefer to be doing something rather than just lying around somewhere – even though it has become more increasingly difficult as the illness has progressed, becoming worse and its symptoms becoming more evident.

What are your experiences of travelling with a chronic illness?  Are there any tips that you could share that would make it easier for someone living with a chronic illness to travel and go on holiday?  Share your thoughts!