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WHAT IS SELF-CARE?

Self-care refers to the actions and attitudes which contribute to the maintenance of well-being and health of the individual.

[Tweet “Self-care is the actions that contribute to the maintenance of health and well-being.”]

When living with a chronic illness, this includes taking prescribed medications, regularly exercising, eating healthily and attending appointments with your doctor.

As equally important is to maintain positive emotional health and well-being.  For me, what has helped cultivate a positive attitude is the development of a positivity board.

This positivity board consists of positive and inspiring quotes and favourite photographs.  And anything else which helps me remain positive and content despite the effects that living with a neurological disorder has on my life.  I have also made myself a comfort box.  A box containing items that bring me comfort and support when symptoms are remarkably severe.  By keeping this box next to my bed provides me the opportunity to self-care when I am unable to get out of bed.

How to Self-Care When Travelling With a Chronic Illness

However, how can we still participate in self-care when stuck on a deserted island.  I don’t mean a literal deserted island, but rather how can we take care of ourselves when away from our daily routines and everything else that provides comfort and safety while living with a chronic illness.

One such example is travelling.

Travelling when living with a chronic illness presents its own set of challenges regarding self-care. Being away from our usual routine and everyday life is difficult.

It’s this change and not knowing what to expect that can make it difficult when travelling with a chronic illness. It’s this change and not knowing what to expect which makes it’s difficult to anticipate, plan and manage our symptoms.  In my experience after four cruises, self-care can often be more difficult when on this type of holiday as when we begin to feel unwell we cannot just pop to the nearest store for the items which can help ease whichever symptoms decide to grace us with their presence. Which means, careful and considered packing before we leave on our adventures.

[Tweet “Travelling with a chronic illness presents its own set of challenges regarding self-care.”]

Go On An Adventure

So, how can we practice self-care while we are away?  How can we ensure that we enjoy our relaxing time away and not let our symptoms get in the way of having a good time?

BEFORE LEAVING

The first piece I would give to anyone wanting to travel while living with a chronic illness is to accept yourself for who you are today.  Recognise and accept the limitations that now exist, and assess your particular needs. Once you know them, then you can start planning around your new roadblocks to find a location and type of holiday that is best suited to your particular needs. For example, if you are planning a city break and you have difficulties with mobility then perhaps find a hotel located near the sights that you want to visit during your stay.

[Tweet “Knowing your limitations and needs make it easy to plan and find the holiday best suited to you.”]

I recently read an excellent article about travelling with a chronic illness. It recommended that before starting to pack is to keep a log of your daily activities to better prepare for your needs while away.  Note things like medications, equipment, and anything else that you might need to help look after yourself while away and especially if and when a flare in your symptoms occurs.  It might also be an idea to start packing a few weeks before your departure; this year, I admit I left some things until the last minute, and the packing left me feeling weak and fatigued.

[Tweet “To prepare for your self-care needs, keep a log of your daily activities before leaving. “]

And find the space to pack your essential self-care items such as books and magazines, a favourite pillow or cushion that you find comfortable if pain is an issue for example.  When I am in a lot of pain, I often find distraction the best way to cope, taking my mind away from the source of my discomfort with something such as a funny and heart-warming film.  As such, I always ensure that I pack my iPad loaded with my current favourite films and TV shows (with headphones as not to disturb my travel companions; useful when pain wakes you up in the middle of the night).  It can also be helpful on days confined to bed because of a sudden flare in the severity of the symptoms to entertain one’s self when everyone else is out enjoying their time in a new country.

smartphone entertainment and travelling

Hydration is also essential, even those not living with a chronic illness. Make sure to carry a water bottle and snacks in your carry-on luggage in case of delays in the airport.  Dehydration and exposure to the sun both can exacerbate fatigue. To avoid this, drink plenty and limit your time in the sun.

Meditation is also very useful in helping ease the burden of symptoms when they are a nuisance.  There are plenty of apps available for smartphones or tablets that focus on meditation and mindfulness.  The exercises can be done anywhere – even busy airports and they are excellent at settling the mind and reduce stress.  If you find travel difficult and stressful, then perhaps investing in an app like this might be beneficial.

[Tweet “Meditation apps are beneficial for settling the mind and reducing stress – and can be done anywhere!”]

DURING THE HOLIDAY

When sampling a new country, we want to do and see everything it has to offer.  We want to push through symptoms like pain, so we don’t miss out on anything.  But by doing so may not be the smartest move as it may exacerbate then even more.  So take a break.  Perhaps limit your activity to only doing one fun thing a day, giving you the opportunity to rest for the remainder of the day.

[Tweet “Pushing through symptoms so we don’t miss out is not smart and may exacerbate them further.”]

If planning energy-consuming activities alternate your days.  For example, have an active day followed by a day of rest.  Doing this will allow your body time to recover and eliminate the stress and disappointment of potentially missing activities.

[Tweet “To eliminate disappointment of missing out alternate your days between active days and rest days.”]

Travel is good for the soul

And this doesn’t have to mean lying in your room while everyone else is having fun.  Book a spa day as an alternative.  Or treat yourself to a day next to the pool with a good book.

During my recent time away, I experienced a day filled with excruciating pain.  Instead of wallowing in self-pity and misery I phoned my best friend as a distraction from the pain.  I found this useful and made my day brighter.  Perhaps you can think about having your person standby in case you need them.

But perhaps the most beneficial part of self-care for anyone is sleep! So try and get a good night’s sleep and nap whenever you feel like you need it. Sleep is perhaps the best form of self-care there is.

[Tweet “Sleep is the best form of self-care there is!”]

COMING HOME

In my experience, travelling can be extremely taxing.  Take a few free days to allow yourself to settle back into your routine and allow your body to recover. Spend the time to pamper yourself and catch up on your favourite TV programmes. Or reminisce while flicking through your photographs from your incredible trip.

Oh, and plenty of sleep, trust me your body will thank you for it!

[Tweet “Allow some free days after returning from your travels to allow your body to recover.”]

And most of all – congratulate yourself! You made it outside of your safe comfort zone. Not allowing the baggage that you carry because of chronic illness from stopping you from seeing the world.  And no letting chronic illness rob you of the excitement and enjoyment that travel offers!

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Thursday April 9th: Challenger 

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

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

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

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

The magnificent ‘Adventure of the Seas’

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

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

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

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

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

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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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:

Summer Lovin’…Summer is coming up.  What plans do you have?  Any family vacation?  What do you look forward to in Summer 2014?

I have to admit that I currently have no plans for the Summer of 2014.  Why is this?  For starters, in my opinion making long-term plans whilst living with a neurological condition or chronic illness like myself, can be extremely difficult.  It can be extremely difficult because everyday is an unknown.  We do not know what each day will bring; how severe the symptoms associated with our condition and how we will feel from one day to the next.  Sometimes especially when experiencing a bad flare in our conditions, we do not know how we will feel one minute from the next even, and so therefore making plans can often be problematic as there is always the worry that we will need to cancel.  And cancelling plans not only disappoints those with whom we have made those plans with, but also leads to disappointment for ourselves.  You know that phrase “We plan, and God laughs” – never has a saying been so true for life with chronic illness, except that it is our bodies that laugh and not God.

"People plan and God laughs" or the Spoonie equivalent is "We plan and our bodies laugh!"
“People plan and God laughs” or the Spoonie equivalent is “We plan and our bodies laugh!”

By the time that Summer arrives of course, I would have already have been on my holiday.  The first holiday in fact that I have had for several years.  At this very moment, I am a mixture of being very excited but also very nervous.  Living with my neurological condition can be very difficult, and therefore I realise that going on holiday may at times be very difficult due to my symptoms such as dizziness.  However, as I am going on a cruise, it has a variety of benefits, such as being able to set the pace for the holiday itself.  I can be as active or passive as I want; and in addition if I suddenly become unwell, I can simply head straight back to our cabin without the hassle of travelling back to a hotel from the beach or from somewhere further afield.  Also, being on a cruise ship could also lead to more independence away from my parents as I can (with hope) wheel myself around to areas of the ship where the activities that I want to take part in are held.  For example, I have learnt that often cruise liners hold art and craft sessions, such as lessons in jewellery making or scrapbooking and so as I have found art and crafts to be useful in distracting myself from symptoms such as dizziness and chronic pain and so therefore may be beneficial for me to attend such onboard activities.

I also know that it may take a while to recover from the cruise and from all of the added activity that comes from being on holiday.  The start of the Summer therefore may be recovering from the holiday.  Unfortunately, the Summer may also see more hospital appointments as am waiting for an MRI to be conducted before seeing my consultant again.

Although I don’t have definite plans for this Summer, I do hope however for more lovely, relaxing and fun days out with my carer and enjoy the most of the warm weather.  Day outs to nearby tourist attractions, days out shopping or simply a trip to our favourite coffee shop, I don’t really mind as long as the Summer isn’t spent in my house with only my symptoms for company.

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