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Escaping the monotony and boredom of chronic illness…

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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:

Health Activist Choice Day 2!…Write about whatever you like

This past weekend saw the annual celebration of Easter.  And it was also a long Bank Holiday Weekend.  A lot of people revel in these long Bank Holiday weekends – it often means a long weekend off from work, and time spent with family.  Many people even go away on these Bank Holiday weekends, perhaps visiting family or going on day trips with family and friends such as the beach if the weather permits.  However, both my parents usually work on Bank Holidays, and therefore, this Bank Holiday I will once again be home alone.  Friends and other members of the family all have their own lives and plans for such weekend and so don’t like to impose; or often I am in too much pain, or the weakness and trembling in the legs is so bad that I am unable to go out anyway.

Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness
Bank Holidays are a time where loneliness and isolation feels more evident when living with chronic illness

It can be so difficult when living with a chronic illness feeling isolated from the world.  In addition, it hurts when you see or hear other people’s plans or stories for Bank Holiday weekends and you are once again stuck inside the house because of chronic illness.  It is not only miserable to be stuck inside during the Spring and Summer Bank Holidays when the weather is beautiful and warm, but it is also incredibly miserable as there is never anything on television.  The usual choices on television are films which you have already seen several times, repeats of old episodes of various television programmes and trashy reality shows.

It is on days like these that the blues can set in especially if symptoms are severe and persistent.  So, the only thing to do is to make your own fun!  But what some ideas of what you can do on such days when symptoms are bad and you need to make your own fun because of one reason or another?  Here are some ideas that you can do on such days when energy levels are low but you also want some fun:

  • Movie Marathon: Think of your favourite actor or actress.  Who is it?  Sandra Bullock?  Tom Cruise?  Julia Roberts?  Whoever it may be, consider having a movie marathon of all the films that they have starred in!  Perhaps you haven’t got a favourite actor or actress; in this case you can watch films from your favourite movie genre.  For example, I love romantic comedies – they are fun, girlie and more often than not have a sweet, happy ending.  Perfect on days when you may be feeling blue.  So, get the DVD player ready, grab the popcorn and settle down on the sofa for some feel-good  entertainment
  • Pamper Yourself and give yourself some Love!: In my opinion, there is no better tonic when feeling low then to give yourself some well-deserved pampering!  Especially when it has been a tough time dealing with chronic illness, and you have begun feeling blue.  Have a lovely warm bubble bath using your favourite bath scent – for relaxing try lavender for example.  Or paint your nails a wild and bright colour.  I usually paint my nails a bright and colourful colour whenever I am feeling low; for some reason it cheers me up and puts a smile on my face no matter how bad I am feeling.  I have had several bad falls recently so I also like to give my poor, bruised legs a pampering my applying soft and comforting body lotion.  If you have some friends around for a night-in, you can even give yourselves facial masks whilst watching some films together – double the feel-good fun!
  • Take a Virtual Tour of a Museum: I know a lot of people love to visit a museum on Bank Holidays with their family or friends.  I love history myself and I love visiting museums to learn of a different period of history.  However, as energy is very often low due to chronic illness then walking around a crowded museum may be too much to handle.  The solution?  Take a virtual tour of a museum that you may have never been before.  There are plenty of choices around; for example the British Museum offers a range of different virtual tours on a variety of different topics in history.  Or if you are more interested in art then the Louvre has virtual tours on their website.  Try searching ‘virtual tours’ and see what is available and find a virtual tour which suits your interests.
  • Get Creative!: In my experience of making cards, being creative whether it be making decopauge cards like myself, or painting, drawing or writing can be extremely cathartic and can also be good at distracting yourself from pain, boredom or feelings of depression that can often accompany being alone or unwell. So, whether you are an artist or a writer, try getting creative the next time you are bored, or suffering from severe symptoms.  It’s cheap, and something you can even do from your bed if needed.
  • Enjoy your garden: When you are unable to get out of the house and enjoy a Bank Holiday at the seaside, for example, it does not mean you have to stay indoors feeling miserable.  Try sitting out in your garden, enjoying the sunshine whilst reading a book or listening to your favourite music on an MP3 player.  If stuck in bed, however, there are meditation exercises that involves you imagining that you are in a beautiful garden, beach or in your favourite place.  Meditation or relaxation exercises are an effective tool against chronic pain, depression and anxiety.  In my opinion, practicing such techniques are well-worth the time when living with chronic health problems.
  • Learn something new: This was suggested by someone I know via social media.  I had no idea that the internet allows you the opportunity to enrol in free online courses! I think this is such a brilliant thing for anyone struggling with chronic illness or disability; as often because of our conditions we are unable to get out of the house.  Many individuals with chronic health problems also do not work and as a result do not have the funds to access courses that charge and are often very expensive, however, there are a number of websites online that allow you to enrol on courses which are completely free!  So, if as a result of your chronic illness you are stuck in the house a lot of the time on your own and find that you become bored, then this is a perfect opportunity to learn something you have always wanted to take up but have been unable to because of the lack of money or because you are unable to leave the house due to illness. It may also be a great opportunity to distract yourself from pain, fatigue and other symptoms that affect your life.
  • Read a book: This is usually the first activity that I go to when alone, bored and feeling unwell.  Its cheap and does not require a lot of energy and thanks to my Kindle I have a number of books I have access too within easy reach.  In my experience, when you are engrossed in a book that interests you, then time quickly passes.

So those are some of my tips to pass the time; distract yourself from boredom, pain and other severe symptoms.  What other things that you can come up with to entertain yourself when alone in the house or just when you are too unwell to go out?  As ever I would love to hear your suggestions and thoughts so please feel free to add any comments below…

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Reflection on a life with illness…

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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:

Reflection…This is a day to reflect.  For WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted.  Reflect on your journey to this day, what are your thoughts and hopes for the future

I am writing this post whilst lying in bed.  It’s yet another bad day thanks to the neurological condition that I live with; it’s another day in which my legs are incredibly weak, and the trembling in them is severe that I am unable to walk far and so I am confined to my bed.  It’s days like this which we are able to reflect – to reflect on the past, present as well as what might have been and dream of a brighter future despite illness.

I was a typical girly girl when I was a child. I loved the fairy tales and the idea of a happily ever after.  That’s what I thought would happen when I grew up – that I would meet my own prince, get married and then live happily ever after.  I had a very naive and child-like view of the world, and suppose my parents shielded me from the horrors and sadness that can very often exist in the world.  Never did I imagine that I would live a life, like the one I am stuck in, I suppose that no one imagines a life with a neurological condition or any chronic illness.  But that was the hand that I was dealt.

I obviously grew up, and developed enough self-esteem to realise that my happiness was not dependant on some hypothetical Prince Charming to sweep me off my feet.  Instead, I dreamt of going to university in order to establish a career for myself.  I eventually decided to study Psychology with the aim of finding work to help other people in need of support and understanding.

However, this particular dream was not to be, and instead of graduating with honours from University and entering the world of employment or even further study, my symptoms became worse.  As an alternative to attending job interviews, my life became all about attending doctors’ and hospital appointments, to attempt to find the cause of my worsening symptoms.  It was to be a long and difficult journey on the road to diagnosis; for example gaining the original referral to see a neurological consultant was a battle as the GP was adamant that my symptoms could be explained by the anxiety disorder I had originally been diagnosed with.  That and long waiting lists to see consultants and for tests to be conducted.

Now, I have a definitive diagnosis.  It might not be what I wanted or expected and the knowledge that the condition was a life-long one was both a shock and a disappointment – knowing that the symptoms may get progressively worse, and the knowledge that the symptoms may prevent from me from ever being to work.  Yes, the journey has been difficult and the symptoms have become worse but on reflection I have learnt that despite being diagnosed with an untreatable and long-term neurological condition does not mean the end of my life.  Life indeed does go on, and despite not being able to work I have discovered that I can still have a purpose in life and help others.  I am involved with a new community for those affected by neurological conditions called Neuro Nula  and am excited by not only the work that I have already done for them, but for the work in the future; to develop the website further and to help others who are facing similar situations that I once faced after being diagnosed. To make someone realise that they are not alone like I once felt.

On reflection I have also learnt that despite living with a neurological condition does not mean that I cannot accomplish everything that I dreamt of as a child.  The journey towards those dreams may look different  and may also take longer but they are still achievable.  This is summed up brilliantly by a quote that I came across on Twitter:

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(Soon to be) Leaving on a cruise ship…

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

Today’s prompt reads as follows:

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

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

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

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

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

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

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

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

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

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Lesson Learned! Don’t walk down the stairs with trembling legs…

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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:

Lesson Learned…What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make the same mistake again

There are many lessons that you learn when diagnosed with a chronic illness, such as acceptance is not about giving up and you are not defined by your diagnosis.  But it is not these big life lessons that you learn whilst living with a chronic illness but you learn everyday on how to live with your specific condition.  For example, I have learnt that in order to cope better with the dizziness that is a good idea to wear a hat, with a fisherman’s hat being the preferable choice, as it blocks out more visual stimuli than other styles.  I have also learned to tell when I need to use the wheelchair, or when I need to take a nap.  However, one lesson that I should have learnt a long time ago is one which I learned the hard way…

The style of hat that is most effective in lessening the severity of the dizziness
The style of hat that is most effective in lessening the severity of the dizziness

The lesson happened one night in late February, Mum and Dad had gone out to see a concert and so I was left home alone.  On that day, I remember it was one of my bad days, with the dizziness and the trembling in my legs particularly bad, and so before they left my Mum had done the washing-up as I was unable to stand for long.  And so they left me in front of the television with a packet of sweets; as my legs was so bad, I probably should have known just to stay lying on the sofa and find a film to watch.

But instead, I thought it was a good idea to walk upstairs to grab my Kindle as there was nothing to watch on the television and walk downstairs.  However, instead of walking down the stairs, I fell down them as I had suddenly lost all sensation in my legs (probably should not have wished for the trembling to stop!).  Fortunately, I was fine – a little shook up, but I hadn’t broken anything.  Well, I hadn’t broken any part of my body, but the Kindle that I was bringing downstairs?  That was indeed broken – the screen had cracked and so became completely unreadable.

The casualty from my tumble down the stairs...
The casualty from my tumble-down the stairs…

 

As an avid reader, this really upset me as it was one of my gadgets that I regularly use, and as I was saving towards the holiday I could not afford to replace it.

The story does have a happy ending however; after it happened I talked about the incident on social media, I think partly as I was on my own and still shook up about what happened and it was my way of having company, or at least some version of it.  A few days after it happened I was sent an email from an employee at Amazon UK who had heard about my fall via social media and the company was offering me a replacement Kindle free of charge!  It was an amazing act of generosity that I will never forget and I am now a happy owner of a new Kindle and reading books on it to my hearts’ content!

But a lesson that I learnt from the incident is when the weakness and trembling is as bad as it was that night, then to stay sitting or lying exactly where I am and not to exert my legs in doing more they can handle.  An important lesson but one which I learned the hard way! (And you will be happy to know that I no longer walk down the stairs holding my Kindle!)

A special thank you to Amazon too!!

What are some of the lessons you have learned during your life with chronic illness?  Are there any that you learned the hard way?  As ever would love to hear your thoughts and comments on the blog post, or the blog generally.  Please feel free to leave your comments below…

 

 

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Recent 5 Challenges and Small Victories

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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:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going

Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition.  I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.

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Challenges 

  1. The first challenge that has been rather large in my life recently is definitely fatigue.  The fatigue recently has been constant and unrelenting.  Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel.  After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep.  It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
  2. My legs have also been challenging for me as late.  If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them.  The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body.  I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
  3. The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair.  Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer.  Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out.  More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
  4. I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to.  It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation!  It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence.  It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
  5. Feeling reliant on other people most of the time.  It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you.  I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own.  It’s very frustrating!

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Victories

  1. I have mentioned this in a recent post entitled -‘I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there!  This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used.  My carer and I have been trying for a long time for me to even set foot in there.  It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time.  I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
  2. This actually links in with a challenge listed above regarding the use of a wheelchair.  Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair.  The dizziness was severe, and so I was nervous about using it.  But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around.  I felt in control whilst using the wheelchair for the first time in a while.  This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
  3. I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently.  It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
  4. One thing that really keeps me going are the networks that I have created thanks to social media.  The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling.  I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
  5. My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness.  A lot of people have contacted me regarding my board, and have even created one for themselves!  I love that I have inspired others and help make someone stay positive through their own illness or troubles.

So, those are my recent challenges and small victories!  To read about what I had written previously then please go to ‘HAWMC Day 27: 5 Challenges and 5 Small Victories…‘

What about your own challenges and victories – have they changed over time as your condition has changed?  Would love to hear your thoughts and suggestions.  Please feel free to post your comments below…

 

 

 

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