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Sometimes we need to throw out the rule book…

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These past couple of days, I have been experiencing the severe trembling sensations in my legs.  Well, I have these sensations all of the time, of course, however the trembling has been somewhat more severe recently.  It is not just these sensations which I have found to be particularly troublesome of late; the fatigue, and the pain associated with the spastic paraparesis have also been bothersome.  At times, living with all these symptoms as well as the constant dizziness has been increasingly difficult and miserable.  Everyone reading this who also experiences chronic illness, will know that when experiencing a relapse, or a bad flare regarding our symptoms, you need to balance the amount of physical activity whether it be exercising, going out or doing chores around the house, with resting your body and taking a break from activity that may exacerbate symptoms.

And I have been doing this; I have listened to my body and took a break from attending the gym, as the trembling in the legs on the day I usually visit was particularly bad.  I even had to cut short my day out with my carer as I felt too unwell and tired to go anywhere else, on that particular day.  However, I have also found that whilst I was balancing the amount of physical activity I was doing and resting; the symptoms were still not improving.  So, when Thursday arrived, and as I hadn’t been out for a few days, and felt miserable as a result, I decided to thrown the rule book out of the window and enjoy the day without worrying about symptoms or maintaining that balance of physical activity with resting.  Of course, on the day I needed to take my wheelchair because of the severity of the trembling in the legs, but was determined that despite all this I was going to enjoy the glorious weather and spend the day away from my bed and the same four walls that I had been cooped up in for several days.

I am so glad that I went out despite not feeling my best and whilst battling severe symptoms.

I had a really enjoyable day out; the weather was gloriously warm and it felt so lovely to be out of the house and feeling the warm sunshine on my skin.  The symptoms, and especially the trembling in my legs were still so bothersome that I was unable to go to the gym, so we decided that instead we would spend the day visiting a little town near to where I live called Cowbridge. I had previously only been there once, and not for very long so thought it would make a change to visit somewhere relatively new and going into little shops and boutiques that I had never experienced before.  I even managed to treat myself to a gorgeous ring that I had seen online by one of my favourite jewellery designers Annie Haak, but had been unsure of purchasing as I was worried that it would not fit my very small fingers!  However, whilst browsing the shop windows in Cowbridge, we came across a little jewellery store that stocked these very same rings!  And after trying on the ring and found that it did fit my fingers, I bought it.  I am so pleased with my purchase and is a lovely reminder of our day out and triumphing over my symptoms.

The gorgeous Annie Haak adjustable ring that I bought for myself
The gorgeous Annie Haak adjustable ring that I bought for myself

“When we are experiencing more bad days then good, we need to make the most of those good days” (Click to Tweet)

The day was not just spent shopping; part of the day was spent relaxing in this pretty and scenic gardens that my carer came across on a previous visit to Cowbridge.  It was so nice just to sit and relax amongst the beautiful and colourful flowers.  It also created the perfect time to take some photographs to commemorate this splendid day out that I enjoyed so much.  In my experience of living with chronic illness, is that when we are experiencing more bad days than good, we therefore need to really make the most of those good days.  Living with a chronic illness, it is so wonderful to make lovely memories that we can look back on during the bad days and reflect upon.

The past couple of days after this day out has been very bad; the trembling in the legs were once again very severe, more so than before, and left unable to fully function.  Do I regret the day out now?  No, absolutely not.  As I said before, living a life with illness, where you experience more bad days than good, we therefore have to take full advantage of the days which are good.  Although it was not a particularly good day health-wise on this day, I felt that I could physically do more than previous days and so took full advantage.  I may be suffering after, however but I still have those lovely, positive memories to look back on and a gorgeous ring to admire.

So, although rest is vital and important when living a life with chronic illness, sometimes however it is just as important to sometimes throw the rule book out of the window and go and make memories to cherish and look back on when illness prevents us from doing anything else.  Let’s go out and live our lives, and take full advantage of the rare good days and make glorious memories in the process…

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Back to the ‘spoonie’ lifestyle…

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Not long after returning from the cruise; in fact it was four days after returning I had to attend an appointment at my local hospital for an MRI scan.  Although, as many of you will know from reading my last post, the holiday was difficult for me, however a positive of the trip was a break from the monotonous lifestyle of a spoonie, such as the endless days stuck inside the house and the endless numbers of hospital appointments and doctor’s appointments.

But now that I am back home, I am also back to living the life of a spoonie.

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The neurological patient’s most dreaded test…

 

And the first step on the ladder back to the life of a ‘sick chick’ was the MRI exam.  A test that has been nine months in the waiting! Yes, a nine month wait for such a procedure is what you can expect from the NHS in Wales!  And even more surprisingly was the fact that the scan was scheduled for 7.45 at night!

The MRI experience is strange and alien no matter how many times you’ve experienced one… (Click to Tweet)

An MRI scan that many of those of you living with neurological conditions are subjected to regularly.  And it’s an experience that is strange and alien no matter the number of times you have had one done.

The machine itself is big, extremely loud, and rather claustrophobic.  So, it’s no surprise that it can invoke a lot of anxiety in many people.

I have to admit when I experienced my first MRI, I was petrified and anxious, however with like many experiences in life the anticipation turned out to be much worse than the experience itself.  In fact, I rather enjoyed it; feeling cocooned whilst in this strange cylindrical scanner and practicing visualisation techniques as a distraction technique from the noise and my anxiety.  For me, I would much prefer the MRI scan and being enclosed than the CT scan which is more open – I may be in the minority there, but it’s true at least for me.

As, the appointment last Tuesday was not my first MRI scan I was therefore slightly more relaxed beforehand but there were still some butterflies in my stomach as although the procedure is not invasive it can still be very unpleasant due to the noise and confinement in the machine for a considerable length of time (this scan of my brain and entire spinal cord took approximately 1 hour).

As there was no receptionist on the desk on arrival we had to phone through to the MRI suite to inform them of our arrival, and then after a nearly 30 minute wait, I was ready for the scan…

The technician helped to lie down on the table and placed my head in a brace to limit movement whilst the scan took place, and gave me an alarm to hold onto that I could squeeze in case of an emergency.  And of course was given some earplugs to place in my ears to limit my exposure to the loud noises that the machine can produce when scanning the parts of the body under investigation.  When under stress or during periods of boredom (yes, having an MRI can be very boring indeed!) I love to listen to music and I know many people  have reported that they had the option to listen to music during their scan, but unfortunately I have never been offered this option.

After settled in the machine, the technician left the MRI suite and situated herself on the other side of the glass window where she was controlling and monitoring the MRI.  And then it started…

I knew beforehand that this scan would take longer than the last which I found daunting as during my previous MRI I found it extremely difficult to stay still for the entirety of the scan.  I found it true of this scan too, and in fact I was so aware of my body and trying not to move that I was in some considerable pain afterwards. After the scan I also had a headache due to the noise that was produced during the scan – the noise a combination of extremely loud knocking and banging as well as the occasional ringing sounds.

Now, it is just the waiting game until I once again have to visit the neurologist and find out the results of the scan and the other tests that I have been subjected to during the past few months…

Would love to hear all of your MRI experiences?  Good or bad?  What techniques do use to get yourself through the experience?  What techniques can we use to make the experience more ‘fun’ whilst the scan is in progress?

Please get in touch by commenting in the comment box below…

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A Personal Experience of Cruising with a Neurological Condition

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As mentioned in my previous post, I concluded that in my opinion cruises are a perfect option for those with disabilities due to the excellent accessibility of cruise ships by large companies such as Royal Caribbean and the excellent care that the staff provides for those passengers with a disability.  It is also preferable to using air travel because of the lack of waiting around for hours in a large airport.  However, as the first post was a general overview of cruising with a disability, I wanted to write another post, writing about my own experiences of going on a cruise with a neurological condition.

[Tweet “Royal Caribbean does an excellent job in looking after those passengers with disabilities.”]

As regular readers will know, one of the main symptoms that I experience as a result of the brain stem lesion is dizziness and problems with my balance.  As a result, I was hesitant about going on a cruise because of the severity of these issues that have increasingly become worse recently.  In fact, a few days before leaving for the holiday, I was in floods of tears stating that I couldn’t face going on the cruise because of how sick I have been feeling.  Furthermore, the attacks of losing my vision also came back the days before the start of the holiday, and as a result, I just thought that I wanted, or even needed to stay at home to be among the familiar surroundings and those items that give me comfort.  I was frightened of these episodes occurring when in unfamiliar surroundings and somewhere where I do not know the layout.  I was eventually talked round into going obviously and had to go anyway as it was too late to cancel without losing a substantial amount of money.

I so wish that I could write telling you, I had a fantastic time.  I wanted so much to be well enough to enjoy the whole cruising experience as well as visiting new places such as Rome and Florence.  However, unfortunately, I found the majority of the holiday feeling very unwell.  The dizziness and vertigo were severe for the entire trip and had not settled since returning, so I am hoping it is not yet another deterioration in my condition.  A lot of people who I know that have been on cruises assured me that these ships are so large that you cannot feel them moving at all (apart from the times when the sea is rough!), however, my experience was far different.  Even when the cruise ship was docked at the ports, I still felt the ship moving; for the entire holiday, my world was awash with constant motion.

Perhaps due to the neurological condition and the problems with balance, as a result, I am hypersensitive to any movement.  Furthermore, as a consequence of the increased problems with my balance while onboard, the number of falls that I experienced increased as a result and therefore had to rely on my wheelchair for most of the cruise.  However, having said this for me, a cruise was preferable as if my severe symptoms suddenly presented themselves then I would not be too far from the cabin where I would be able to lie down and recuperate until the symptoms dissipated and I felt well enough to rejoin the fun onboard again.

[Tweet “I was awash with constant motion on the cruise as a result of my hypersensitivity to movement.”]

I didn't manage to get off the ship during the cruise but didn't miss out on the amazing sights that were on offer from the ship itself. This is an amazingly beautiful picture of Nice
I didn’t manage to get off the ship during the cruise but didn’t miss out on the amazing sights that were on offer from the ship itself. A beautiful shot of Nice

The symptoms, however, did not dissipate or I recovered enough to enjoy the experience fully, and therefore, unfortunately, was unable to leave the ship and visit the various destinations that the ship docked.  The symptoms were just too severe for me to feel well and strong enough to get off which is such a disappointment for myself as I so wanted to visit these places and those in Italy in particular.  Instead, I had to make the most out of what I could do, which was not much because of the severity of the symptoms and due to the weakness in my legs.  Instead, I stayed in the cabin and slept due to the fatigue or spent the time reading.  It might sound as if I didn’t accomplish much. However, I did manage to read a rather impressive six books during the 15-night cruise, some of which I have wanted to read for a long time but hadn’t found the time.

[Tweet “I couldn’t do much due to the severity of my symptoms so I had to make the most of what I could do.”]

A positive therefore is that the holiday gave me time to rediscover a love of reading and losing myself in stories that for a short period took my mind off the dizziness, trembling, weakness, fatigue, and pain.  And talking about pain, I spent a lot of time using the Solarium and enjoying the facilities including the warm Jacuzzi, sauna and steam room.  I found that spending time in the jacuzzi was excellent to relax and unwind from the stresses and worries of my condition as well as helping to ease the pain that I experience in my legs.  In addition to using the jacuzzi, my mother also splashed out for us to have a massage at the onboard spa Adventure of the Seas, which again was incredibly enjoyable as well as being extremely relaxing.  The masseuse noticed the stiffness in my legs, as well as my cold toes, which is a sign of poor circulation so, was even recommended on some oils which we could use at home to ease the pain and increase the circulation in my legs.  It was very pricey but was worth every penny.  My highlight of the holiday!

My sanctuary onboard Adventure of the Seas
My sanctuary onboard Adventure of the Seas

Even going down for dinner was difficult for me – the lighting, the varying ceiling heights, and the loud noises all seemed to bother me.  It made me feel very dizzy and setting off episodes of vertigo, and although I felt silly for wearing it, I needed the security of my hat with me, the majority of the time to block out the stimuli which were making my symptoms worse.  I was unable to attend the shows because of the strobe lighting and flashing lights used during the performances, as they too are a trigger for the episodes of vertigo that I regularly experience.

However, I did attend an ice show which used such effects, and was very unwell afterward, with the inability to even get dressed the very next day.  People did stare and felt very self-conscious, but I remembered a great quote by Dr. Seuss “Those who mind don’t matter, and those who matter don’t mind.”  A lot of people who we met during the cruise were lovely and very understanding such as Gemma and Stan, a granddaughter and granddad who sat at our table at dinner.  Both were lovely, and we enjoyed their company during the cruise.

 

Although even attending dinner was difficult as positive is that during most of the holiday I still managed to go despite the severe symptoms I was experiencing and very much enjoyed dressing up for the formal nights.  Back inside the cabin, we were greeted with the fun and cute ‘towel animals’ created by our wonderful room attendant (who nicknamed me Rihanna during the holiday!).  They also helped put a much-needed smile on my face!!

To conclude, the cruise was a difficult holiday for me, with the deterioration and severity of my symptoms.  A cruise, however, does offer several benefits such as the easy and fast booking and check-in day on departure day, and the short distance to your cabin when chronic illness strike.  Although the cruise was difficult and felt very unwell for most of it, I am glad that I went; if I hadn’t, there would always be that ‘What if?’ question in the back of my mind.  Also, if my parents were to go on a cruise again, I would not feel as if I were being left out or jealous that they were going away and I wasn’t because I am aware of the effects that the constant motion of the ship has on my particular symptoms.  But as unwell as I was during the cruise, there were several highlights of the holiday and positives of my time away.  Would I do it again?  Probably not; perhaps the only way, would be if the doctors were able to cure the dizziness that I experience.  How likely that is I don’t know.

[Tweet “I’m glad that I went as if I hadn’t there would always be asking ‘What if?'”]

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

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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 happiness even 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.

[Tweet “A worry about travelling is that you will not be able to cope being in unfamiliar surroundings.”]

The magnificent 'Adventure of the Seas'
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.

[Tweet “The boarding process for going on a cruise is so easy and relatively quick!”]

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
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 some 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.

[Tweet “Take a piece of carry-on luggage with you with any important and necessary items.”]

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; an extended, 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 traditionally 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.

[Tweet “You need to book a cruise early to guarantee an accessible stateroom.”]

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 rushed 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 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 vessel as there is plenty of room for both abled passengers and those in wheelchairs to steer around 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.

[Tweet “It’s amazing that it never felt crowded on the ship despite a large number of passengers onboard.”]

I would like to thank all of the staff on ‘Adventure of the Seas’ as the majority of the team 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 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 would like to know more?  If so, please leave a comment in the section below.

[Tweet “I felt that being in a wheelchair and going on a cruise was a perfect fit.”]

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Back from cruising…but writing hasn’t stopped!

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Welcome to all readers new and old.

Sorry for the lack of content recently, but as some of you may remember I wrote a post as part of the WEGO Health HAWMC on how I was about to embark on a cruise; the first holiday that I have been on for some considerable time ( you can read the post here).  Anyway, yesterday I arrived back from that very cruise.  I would love to say that the experience was amazing and completely enjoyable, but unfortunately the neurological condition and the symptoms that go along with that, very much got in the way and made the holiday experience very difficult at times.  I will write a post all about my personal cruise experience in due course, but at the moment life is busy with unpacking and sorting through all of my many emails!

Anyway, just wanted to make you all aware that again I have contributed to the wonderful ‘The Pillow Fort Magazine’, which is a fun, positive and inspirational digital publication for young people suffering with chronic illness.  The premise of the magazine and the wonderful community that the editor Lizzy has established is to provide a safe, positive and fun sanctuary for those battling chronic illness to be uplifted, inspired and make the experience of living with illness a little more fun, or in the words on the website ‘make chronic illness suck less.’  Inside the magazine there are approximately 20 submissions including written articles and beautiful photography from a variety of young spoonies battling with different chronic conditions (of which I am one!).  Each page is beautifully designed as well as being unique.  It is a wonderful magazine, and one which is particularly uplifting on those bad days stuck in bed.  The articles are beautifully written and thought-provoking in the sense that it makes you look at living with chronic illness in a different way.  As an example there is a wonderful article on the similarities between various superheroes and those living with chronic illnesses.

Here is a sneaky peek at my pages in the magazine!:

Screen Shot 2014-05-23 at 15.45.15

 

To read more of my article in the new issue of the magazine and be generally uplifted and inspired by each and every contributor then you can go and get your own personal (digital) copy of the magazine here

And please get in touch and let me know what you think of my article or on the magazine in general! Feel free to leave any comments or suggestions in the comment section below…

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