Spreading my wings…

As most of my regular already know, I love to write and although this very blog gives me an excellent opportunity to do so, I often wish that I could have an opportunity to write for a wider audience.

So, I am very pleased that this week, I have been published in two excellent publications.

Firstly, several weeks ago, I received an email from a journalist from PharmaTimes magazine, which is a very well-respected healthcare and pharmaceutical publication.  The magazine offers independent, authoritative and trustworthy content on key issues and topics that are of relevance for those working in the healthcare and pharmaceutical industry.  As part of the development of the magazine, they have began to interview one patient per month regarding their own views and issues that affect them as they navigate the healthcare system from the ‘other side.’  The email therefore was to ask me if I would be interested in taking part in an interview giving my own personal views on the healthcare and pharmaceutical industry.

I agreed as not only was it a great opportunity to discuss my views on a subject that affects much of my life as one piece of my identity – a patient.  It however was also an opportunity to help professionals gain an insight into the patient perspective and represent the patient population by doing so, especially as a patient living with a rare neurological condition.

The Patient File

In addition, I have again been published in yet another edition of the wonderful ‘The Pillow Fort’ Magazine.  For new readers, The Pillow Fort Magazine is an e-magazine for and written by young(ish) people affected by chronic illness.  Each issue has a different theme, and this particular issue was based around “Self-Care”.  This edition features many informative, interesting and relevant articles based around the concept of self-care from an ‘A to Z of Self-Care’, through to exercise for well-being and even delicious recipes for ‘self-care’ cocktails.

As a result I wrote an article based around self-care and holidays and how we can still take care ourselves even when away from our regular routines and everything that provides us with comfort.  This article was inspired by my recent cruise and how I participated in self-care when I felt at my worst and stuck on a moving ship.

 

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To check out this wonderfully positive and inspiring magazine and/or purchase this particular issue (or previous editions) then please do so by clicking my affiliated link below:

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I’ll be there for you…cos you’re there for me too…

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Throughout my teenage years, I was a massive fan of the television show ‘Friends’.  Not only was the show incredibly funny but I also loved the relationships between the six main characters – their strong bond of friendship and how they were constantly there for each other.  However, although the show was entirely fictitious, I also found myself feeling envious of the close friendship as unfortunately I had none of my own after my so-called friends abandoned when symptoms, especially the dizziness started interfering with my everyday life.  There is nothing like a diagnosis of a neurological condition, or any other chronic illness to show who your real friends are.

After leaving university and entering adulthood, the problems regarding friendships have not improved.  Many friends that I have made, unfortunately no longer in contact with me; despite my attempts to do so.  This is something that has hurt me deeply over the years, especially as I thought of them as close friends.  I am not sure the reasons behind the now lack of contact – the reason may lie in their own prejudices towards my conditions; or perhaps they failed to understand the reasons behind my inability to go out to certain places that I find uncomfortable and can precipitate an attack of vertigo.  Whatever the reason however, it hurts deeply and has often led to a decrease in self-esteem and self-confidence as a result.

In my last blog post I write how many of my symptoms have recently worsened and furthermore how I have struggled both physically and emotionally because of the sudden deterioration.  What has also made it harder is the loneliness and isolation that I have felt when in the house during this period.  It is during these times that I wished that I had friends living close-by that could pop-by for lunch or to take me out to distract me from my severe symptoms and make me feel that I am less alone in my struggles with living with this condition.

Although I may have a distinct lack of friends living in a close proximity, I have however made a lot of friends online that although the distance between us is large, they should not be excluded from this discussion into friendships and chronic illness.  These friendships that I have developed online through the blog and social media have come to mean so much, as they too also experience chronic illness or other long-term chronic conditions and therefore understand exactly what it is like to live with them and thus gives support like no other.  Furthermore, by using tags and hashtags on social media such as the term ‘spoonie’ (a person who is living with a chronic illness or chronic pain) is not only fantastic at connecting with others going through similar experiences but also makes us feel that we are part of a community, a fact that is important as due to our conditions we often feel excluded in other areas of our life.   And it is thanks to these online friendships that I now feel that I have people outside my family that actually care about me, and have also led to the feeling that I am worthy of such friendships (as I have been burned by many people in the past, I often felt that there was something wrong with me, or was not worthy of friendships).

It is surprising that these online relationships can develop into such strong and meaningful friendships, but for many of us living with long-term health conditions, or conditions which prevents us, or makes it difficult for us from getting out into the community we know that it is these friendships that are so important to us and makes life living with illness a little easier.  In my experiences, I have often found that the friends whom I have met online actually keep in contact with me, or even cares more about me then the people who are in my real-life existence.

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A favourite saying of mine is “Friends are like stars.  You don’t always see them, but you always know that they’re there…” and it is certainly true regarding my fellow chronically ill friends.  Just because I don’t see them, it does not make the friendship any the less important or real – what is important, however, is that they continually are there for me during my struggles and even through the good; and also that they show concern and support when I need it.  So, what if it comes through a computer screen instead of a face-to-face interaction, isn’t the fact that we have made a connection with another person the most important point?

But perhaps there are ways which I can develop these friendships further – perhaps swapping phone numbers with friends I have made online, or even start using Skype as a means in keeping in contact with people may be a start in gaining support when I am in need, and to also give support for when I am needed to support someone else in need?

 

So, I am interested – what are your experiences of friendships and life with chronic illness?  Have you still managed to maintain friendships with those in your real-life existence? Or do you rely on friendships that have developed through online communication?  Love to hear your thoughts and comments on this subject so please don’t hesitate by getting in touch by commenting below or even getting in contact via social media (links can be found by clicking the icons at the top of the page).

 

Life on autopilot…

I realise that I have been deathly quiet in regards to my writing recently but unfortunately I have been really struggling with well, everything.

I have been finding that the trembling in the legs is becoming increasingly worse.  Standing is becoming extremely uncomfortable and impossible to do for very long as I am feeling the severity of the tremors and the buckling of them whilst queueing or whilst completing the washing-up for example.  With regards to standing, it has been evoking anxiety as I am always afraid that they will suddenly give way, which has been happening to much embarrassment.  It was not until I was speaking to a person who has similar problems to myself, that using two crutches maybe more beneficial for myself than using just the one as it offers increased stability when standing and walking and reducing the risk of falls.  I loved the idea of being able to save myself from falls as because I have been experiencing so many of them my bruises have bruises!

The owner of the gym even kindly let me borrow a couple of the crutches that have been donated to the Feelgood Factory.  Unfortunately, after using them for a few days around the house and even once whilst out with my carer, I have decided that this option is not for me as not only have I found using two incredibly awkward and uncomfortable, they have also proved to be inconvenient.  For example, whilst in the house on my own, I was unable to carry my lunch from the kitchen to the living room as I had no free hands to spare!  It has also been found to be inconvenient when out shopping as I am left unable to pick items from the shelves or racks and therefore offers me less independent than using the one crutch as I am reliant on other people to do my shopping for me.  In addition, because of the dizziness I have always found that holding onto someone for support, such as linking arms gives me comfort and confidence when out and about and so using two crutches also prevents me from having the support of another person.

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So, I now have to make a decision to make whether to start using the wheelchair on a more permanent basis; although I do not always feel comfortable in using one because of the dizziness and vertigo, it has been put to me that because of the increasing severity of the trembling as I have stated above and the increased number of incidents of falls then it may be the time that I need to start thinking of using it for the majority of the time when I am outside of the house.  This is not only to keep me safe from further injuries, but also prevents my falls from injuring others or even from falling and damaging items that are on display in the stores that I visit.  It is not an easy to decision to make; for anyone it is difficult to admit weakness and further to admit that you need help.  It’s difficult to accept that my legs are getting worse and further that I may need further support such as the wheelchair to be able to get around when out of the house.

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Fatigue has also been a big problem for me also.  As the pain and trembling have been bad during the nights, sleep as a result has been limited and thus leaving me exhausted through the day.  Naps has been my best friend lately and have found myself falling asleep during the afternoons.  These naps are more frequent and last longer after days where I am out and about I have also noticed.  Fatigue not only leaves you feeling absolutely exhausted but also leaves you with little energy (or in our case ‘spoons’) to be able to do things that we would ordinarily do with ease.  Completing one circuit of the gym has been extremely challenging, whereas before I could complete two with ease.  Chores has left me unable to function for hours.  Not only it has had an effect on my energy levels either.  It has also had an effect on my mood – not only have I been snapping with very little provocation but I have also been feeling very low.  I would not say it’s depression but am just generally low in mood.

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In other news, I finally have had an appointment with the neurology consultant for early next month so I am hoping that all of the test results that I have had done over the past few months have found something, or there are ways in which they can help me and improve my overall quality of life.  When things are bad such as what I am experiencing at the moment, it can often seem as if we are just existing rather than living; if we are just going through the motions or living on autopilot but I am determined to continue to fight my way through the bad patch and find my silver lining…

Sometimes we need to throw out the rule book…

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

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…

Back to the ‘spoonie’ lifestyle…

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!

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…

A Personal Experience of Cruising with a Neurological Condition

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 fantastic care that the staff provide for those passengers with 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.

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 been increasingly become worse recently.  In fact, a few days prior to leaving for the holiday, I was in floods of tears stating that I couldn’t face going on the cruise because of how bad 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 felt 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 an amazing 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 has 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 by 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 type of motion.  Furthermore, as a result of the increased problems with my balance whilst 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.

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. This is an amazingly beautiful picture of Nice

The symptoms however did not dissipate or I recovered enough to fully enjoy the experience, 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 6 books during the 15 night cruise, some of which I have wanted to read for a long time but hadn’t found the time.  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 time took my mind off the dizziness, trembling, weakness, fatigue and pain.  And talking of 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 spa onboard Adventure of the Seas, which again was incredibly enjoyable as well as being incredibly relaxing.  The masseuse noticed the stiffness in my legs, as well as my cold toes, which apparently 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 really 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,, making me feel very dizzy and setting the vertigo and although I felt silly for wearing it, I needed the security of my hat with me, the majority of the time in order 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 being used, 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 afterwards, 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 on 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.  Arriving back at the cabin we were on some nights 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!!

 

Being so unwell and suffering with severe symptoms so much on a holiday was incredibly difficult and as a result was very difficult to remain positive.  For obvious reasons, did not have room to take my positivity board along with me on the board which is a main tool of mine to remain positive despite chronic illness.  I did however take my gorgeous Book of Strength and Book of Motivation along with me, which helped me to cope during the difficult times.  Then whilst browsing the shops onboard, I saw a gorgeous necklace, depicting the word ‘hope’.  In replace of the ‘O’ was a ribbon using silver stones.  A silver ribbon, I remember reading is used for a variety of different including brain disorders (or neurological conditions) and as a result was drawn to it, and thought it would be a perfect piece of jewellery to remind myself to remain positive despite living with a neurological condition and remain hopeful on the days where dark clouds are appearing in the same way the positivity does for me when at home.  A couple of days before the cruise, they had a jewellery sale – this time selling charm bracelets by the jeweller Bella Perlini.  There were many bracelets to choose from in a variety of different colours; so many that I had trouble to decide which to buy.  Then I found a plain silver charm bracelet, which had the words ‘Live, Love, Laugh and Dream’ engraved and again the inspiring positivity of this piece of jewellery really spoke to me and so had to buy it.  With these pieces of jewellery it is like wearing a piece of my positivity board and carrying it with me wherever I go.

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 being asked in the back of my mind.  In addition, 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.

 

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

Our holiday really started the day before we got on board ‘Adventure of the Seas.’  In order 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 the 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 whilst being on a ship with the constant motion that it brings.  This anxiety was particularly evident as prior to 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 prior to the start of the holiday I experienced a total loss of vision.  Regular readers to the blog will know that I experienced this particular a few months ago, however I have not experienced these particular 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, and all the positives of going such as time away from the house where I spend the majority of my time.  Admittedly, the condition is very bad 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'

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 get 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 including passport check and having a photograph taken for your sail pass (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 cards; in this case my Dad’s as no cash is used when onboard).  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

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 and 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.  I was pleased when we arrived at our stateroom.

As I was going to be using the wheelchair for the most of the holiday, we booked an accessible stateroom.  Our first choice was for a cabin with a balcony, however as they were all booked we settled for an inside cabin overlooking the Royal Promenade which has 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 the Promenade itself.  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 are able to get the type of stateroom that you desire, especially true if wanting a balcony as they are often the most sought after.  The wheelchair accessible stateroom like ours are 1.5 times bigger than regular sized staterooms, with widened doors, a wet room, and a raised toilet.   The only downside for being a disabled passenger is that in order to ensure a disabled accessible cabin (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 is 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 to 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 film.  The ship is spacious and is really easy to navigate around the ships as there is plenty of room for both abled passengers and those in wheelchairs; 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 a number of dishes so those with food intolerances are well taken care of.  It was such a pleasure to enjoy a starter, main and dessert every night; a decadence that I am most certainly not often presented with.  Starters such as Crab Cake, Spinach Dip and Chilled Pina Colada Soup were among my favourites.  My favourites among the main courses I enjoyed onboard 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 was 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…

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Thank you! xx

 

Back from cruising…but writing hasn’t stopped!

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!:

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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…

The end is here….

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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 final prompt reads as follows:

You did it!…You’ve crossed the #HAWMC finish line.  Recap the past month for us.  What did you enjoy, what didn’t you enjoy?  Favourite prompt?

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Well, I have made it!!  I have managed to write ALL 30 posts in 30 days!  And what a journey it has been – one full of ups and downs.  Celebration of triumphs over certain neurological symptoms in the post ‘I went and I conquered!‘ and reflecting on the tough times as a result of chronic illness in posts such as ‘Dear Rhiann (at age 16)‘ and ‘Escaping the monotony and boredom of chronic illness…‘.  Some posts were deeply personal and regarding my own life and experience with chronic such as the letter to my younger self, ‘Reflection of a life with illness…‘ and ‘Lesson Learned! Don’t walk down the stairs with trembling legs…‘ whilst other posts explored what is it like to live with a chronic illness in general in posts such as ‘Clichés often heard when dealing with chronic illness…‘, ‘The representation of chronic illness on TV…‘ and ‘Rules for dating a Spoonie…‘.

Although there were a lot of difficult aspects of completing such a monumental task such as writing everyday for 30 days, it has been a challenge that I most enjoyed.  The challenge allowed me the opportunity to focus on something other than on my symptoms and feeling unwell; it gave me focus and also gave me a purpose.  Another aspect of  the challenge that I also enjoyed was the opportunity to connect with other bloggers and learn more about their lives and experiences with chronic illness.  Although many of the blogs that I read or have read during the course of this writing challenge are about all different types of chronic conditions, it is surprising therefore reading others’ experiences and thoughts regarding living with chronic illness and seeing my own reflected in their words.  It shows that we don’t have to find other people with the same diagnosis to find support and a connection with other patients.  I have particularly enjoyed reading the wonderful and eloquent writing of Jessica Gimeno on her lovely and inspiring blog ‘Fashionably Ill: The Sick Woman’s Stylist‘.  I have also had the pleasure to meet a new blogger named Kerry Wong who has a wonderfully positive and inspiring blog named ‘Float Like a Buttahfly‘ and finally I have discovered a very informative and interesting blog about living with an Autistic Spectrum Disorder at ‘What’s the ASDeal?

I didn’t dislike any part of the challenge, however there were aspects of the month that were incredibly difficult, such as dealing with severe symptoms whilst needing to write posts.  Not easy when living with fatigue and you are constantly tired.  To help this, I planned the posts ahead of time, which came as a real help especially as some days I was unable to get out of bed due to the severe weakness in my legs and as the posts for those days were already written I was just able to proofread them and then hit the publish button from the comfort from my bed.  In addition, some of the posts were also similar or even exactly the same as prompts from previous years of the Health Activist Writer’s Month Challenge.  An example of  such a prompt is the ‘5 Challenges and 5 Small Victories‘ and the reasons for why we write.  It was therefore difficult to find new ways of answering these particular prompts without repeating what I have written before.

I have to admit that I am not able to choose a favourite post as I enjoyed writing them all.  The one post that did get the most traffic though was ‘Clichés often heard when dealing with chronic illness‘ so perhaps that was the readers favourite post.  I did particularly enjoy the prompt that asked us to write an acceptance speech – I really liked writing the post as it allowed me to thank everyone who has supported me and helped me during my journey from diagnosis of the neurological condition to where I am now.  I even showed this post to my Mum whom I mentioned in the acceptance speech, and she even teared up a little so it must have been well written and a wonderful post.  Which post from the last 30 days were your favourite?  I would love to hear your thoughts on the whole challenge!  Please feel free to add any comments, messages or suggestions below…