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HAWMC Day 26: Navigating the Ups and Downs 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 on given prompts.

Sunday 26th April: Make it a great day!

Life is full of ups and downs.  Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going.  Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There is saying that says ‘Life is like a rollercoaster.’  And this saying, perfectly sums up what it is to live with a chronic illness.

Every day there are many ups and downs as a result of our chronic illnesses.

There are plenty of ‘up’ moments, little moments that make the day worthwhile and gives us a reason to smile.

However, inevitably there are just as many ‘down’ moments, usually as a result of the onset of symptoms, and other effects that are a result of living with a chronic illness.

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It is true that we as individuals have control over how we are feeling and therefore influence how our day is going.  However, as those of living with a chronic illness will relate, often our symptoms and our long-term health condition very often dictate the type of day we are going to have.

Take yesterday, for instance, as my Mum has the week off from work, we were planning a trip to a local out-of-town shopping centre, which I was really looking forward to, especially as trips out, particularly those with Mum and Dad are rare.

However, on the morning of the planned trip, I awoke feeling exceptionally weak.  During the night, I experienced excruciating pain in my legs, and in the morning, I found that they were weak and barely strong enough to hold me up, never mind being strong enough to allow me to walk around shops for most of the morning.

Furthermore, the constant dizziness that I experience as a result of the brain stem lesion was exceptionally intense.

As a result, therefore, I felt that I was too unwell to go on the planned trip, and instead spent most of the day lying on the sofa beneath my comforting duvet whilst my parents went shopping.  It was disappointing and frustrating not being able to do something that I was so looking forward to, and just one example of not being in control of how our day is going.

So, on these bad days, and the days in which we have no control over our day as a result of illness, how can we help change our frame of mind to make a bad day seem less so?  Here are 5 tips that can help change our day:

  • Practice gratitude: In my experience, using a gratitude journal and practicing gratitude can greatly help change our mindset.  In these gratitude journals, it is useful to write at least 3 good things that happened to you during the day no matter how small or insignificant they may seem.  In my experience, in my doing so it helps to change your negative mindset into a positive one, and furthermore, it also helps to make you appreciate the little gifts that each day delivers.

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    Rewarding yourself: After a long day battling with symptoms such as pain, nausea, dizziness is a feat in itself! By planning to reward yourself, for getting through a difficult and stressful day, or for finishing a task despite dealing with debilitating symptoms it can help to give yourself something else to think about besides the symptoms currently being experienced.  Rewarding ourselves gives us something to look forward to despite the stresses of living with chronic illness. The reward does not need to be big or expensive; sometimes it’s finding pleasures in the little things in life.  My favourite reward?  A delicious bar of chocolate to savour at the end of the night!

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  • Listen to a favourite song and sing along!: Research has shown that listening to music that you like can actually alter your mood and alleviate feelings of depression.  Therefore, make your own ‘Feel Better’ playlist in your Mp3 player that includes songs that work for you and which lifts your mood.  Choose positive and uplifting songs that you can sing along to, such as the brilliant ‘Happy’ by Pharrell Williams.  It could really help change the outlook for the day!

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  • Honour yourself and your body: On these days, where we feel that we have no control, is the most important time to practice some self-care.  It is important to practice these rituals when we need it the most.  Nurture yourself by taking a warm bath, schedule a massage, cozy up with a book, or relax with a cup of tea and enjoy some quiet time.

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  • Smile!: Research has shown that in fact smiling really can turn a frown upside down.  When things seem bad smiling can actually make us feel more positive and happier about the situation, so let’s all try smiling!  And surround yourself with positive people and positive things – the positivity board that I have set up in my bedroom really does help when I am experiencing bad flares as a result of my condition.  It is a reminder that the negative situation is not permanent, it’s only temporary and as everything that is brief, it will soon pass.
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HAWMC Day 22: Finding Sanctuary Amidst the Chaos 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 given prompts.

Wednesday 22nd April: Hobbies 

Running and 3PM dance parties are some of our favourite hobbies at WEGO Health.  Tell us, what are YOUR hobbies?  Love to crochet?  Can’t stop collecting rocks?  Take photographs of everything?  Share your favourite past times.

Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion.  The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.

Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness.  This is a post that I have already written during a previous #HAWMC and which you can read here.

Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare.  By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.

An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom.  My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me.  It is also an homage to me, filled with everything I love.

I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room.  The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital.  Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods.  I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box.  Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.

Some inspirational quotes

Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness.  Making new friends and maintaining existing friendships can be difficult.  As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals.  Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood.  By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.

When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief.  During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs.  I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.

Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently.  During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else!  Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else.  Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.

Addictive viewing amidst a bad flare in symptoms
Addictive viewing amidst a bad flare in symptoms

As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into.  They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual.  I have found it particularly effective in helping to distract my mind from the pain in my legs.  I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making.  Also, a great way of being productive amidst being physically incapacitated by symptoms.

Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness.  Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes, as a result, can be difficult and lead to issues surrounding body image.  For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.

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HAWMC Day 21: The Disparity Between our Life Lists and the Reality…

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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 on given prompts.

Tuesday 21st April: Reflection 

This is a day to reflect.  For the WEGO Health family, we reflect on the inspiring and tireless work Health Activists do every day.  Reflect on your journey today.  What are your thoughts and hopes for the future?

Currently, I am reading an emotional and uplifting book, called The Life List, by author Lori Nelson Spielman.  It tells the story of loving daughter Brett Bohlinger, struggling after the death of her beloved mother.  In the book, she is left not only struggling with the death of her mother, but also is then left to pick up the pieces of her shattered life, after also losing her job at the family business, and then learning that her mother’s will, has one big stipulation – to receive her inheritance, Brett must first complete the life list of goals she’s written at the age of fourteen.

The Life List by Lori Nelson Spielman
The Life List by Lori Nelson Spielman

In the book, therefore, she is reintroduced to the goals and ambitions she made as a child and to reflect on the choices she has since made and the life she is currently living.

During my formative teenage years, although I never made a written list of the goals that I wanted for my life, just like anyone else I envisaged what my future would look like; marriage to a wonderful and kind man, a couple of children, and a successful career helping people for instance.

It is interesting though to ask about the efficacy of making such life lists.  Are they a useful tool to direct your future toward a life that you wish to live?  Or, do they only serve for disappointment when the life you saw for yourself is so far removed from your current reality?

For those living with chronic illness, for example, none of us or wanted or imagined the life that we have been stuck with.

There is nothing we want more than to be productive members of society, but unfortunately, our bodies have other plans.

Once upon a time, we imagined a life full of love, happiness, career successes, but instead, our lives revolve around our symptoms, hospital appointments and cancelled plans.

What would your ideal life list look like?
What would your ideal life list look like?

Admittedly, if I were to compare the life that I saw for myself as a teenager, like Brett in the book, and the life that, as if often seems, was planned for me, I would feel enviable disappointment regarding my life, and envy for those who are still able to pursue their life-long dreams and ambitions.

In the book, however, Brett embarks on a personal journey in search of her adolescent dreams, and by doing so she finds that life’s sweetest gifts can be found in truly unexpected places, and happiness can look remarkably different to the life that we imagined or had planned in a life-list.

And I believe that living with a chronic illness can also teach similar lessons; our lives may not have turned out as we imagined, but sometimes we may find little gifts which make life better than the one we imagined.  For instance, if it were not for the neurological condition I live with then I would not have found a passion for blogging, and I like to think that although I do not have a career which entails helping people, I do good work maintaining this blog and perhaps helping others in the process.

Another gift I have discovered on this chronic illness journey is the wonderful friends I have made along the way, and continue to make every day.

The support and friendship among the ‘spoonie’ community are astounding, and every day I am discovering new friends who are special and making friendships that will last for many years to come.

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HAWMC Day 20: Going back on the waves…

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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 on given prompts.

Monday 20th April: Travel Time 

If you could travel anywhere in the world, where would you go and why?  Maybe you’ve already traveled to an exciting place and want to go back.  We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!

“Don’t float through life, make waves…”
– unknown

Travelling has never been an activity that I have particularly enjoyed.

I am very much a home-bird; never happier when I am at home surrounded by the comfort of the familiar.  Packing for holidays has also been something that I have found stressful, with my parents constantly barking at me to get everything I am taking with me ready, and then asking if there is anything that I have forgotten!

As my condition has steadily worsened over the years, holidays, as a result, has not been a priority and therefore have stayed with family whilst my parents have gone on holidays including a trip to Canada, and their first cruise to celebrate their thirtieth wedding anniversary.

The debilitating symptoms and love of the familiar are not the only reasons why travelling is just not my bag.  Living with a long-term condition in which the symptoms fluctuate, and as a result makes life very unpredictable.  Life with a chronic illness is often extremely unpredictable, never knowing how we are going to feel from one day to the next, and never knowing when symptoms are suddenly going to appear.  And it’s this unpredictability therefore that makes travelling particularly difficult and daunting also.  As my condition, and particularly the dizziness and vertigo worsens in buildings with high ceilings, such as airports, for example, flying abroad is also very problematic and therefore has prevented me from being able to travel.  Because of this it just seemed easier not to travel and instead enjoy the sights on one’s doorstep as an alternative to travelling long distances.

However, two years ago and after experiencing difficult times as a result of the neurological condition I live with, my parents decided that we were all in need of a relaxing holiday and away from the stresses of illness, hospital appointments as well as those experiences in everyday life.  And somehow, they talked me around to going on a Mediterranean cruise visiting France, Italy, Spain, and Portugal.

This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extroadinary beauty of my surroundings
This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extraordinary beauty of my surroundings

All my research assured me that this type of holiday was ideal for those with disabilities or chronic illnesses; not only is cruising extremely relaxing but also has the benefit of having your cabin close by for when symptoms appear out of the blue and suddenly being taken ill.  Cruise ships are also fully accessible if a wheelchair is needed, and unlike air travel, there are no long waits or delays at airports, so much less stressful than flying to holiday destinations!

Regular readers of the blog will know about the trip which I wrote about in a past post.  The cruise was difficult for me due to a sudden deterioration of my symptoms which occurred a couple of months before the start of the holiday. As a result, I was unable to get off the ship at the different ports and go on the excursions.  Most of the holiday was either spent in the cabin reading or sleeping, or in the solarium relaxing, in the attempts to ease the excruciating pain in my legs.

Despite this, however, this year I am once again going on another cruise, even going on the brand new Royal Caribbean cruise ship, Anthem of the Seas!

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A lot of you, are probably wondering why I would choose another holiday after my first experience last year.  Well, yes, the holiday did not go as plan and was left unable to do many things that I was looking forward to before leaving due to severe and debilitating symptoms, but that did not mean the experience itself was awful.  We needed a holiday to relax, unwind and switch off from the stresses of everyday life, which despite the pain and other debilitating symptoms affecting the holiday, I still managed.  The cruise was not an awful experience, and there were plenty of moments that I thoroughly enjoyed (such as dressing up) during the trip.

Furthermore, I thoroughly believe that we cannot let one bad experience put us off from trying again.  Just because I experienced a relapse in the debilitating symptoms last year before and during the cruise, does not mean that the same thing will happen this time.  This cruise will be my second, and therefore will be easier, as I am more aware of what the experience will entail and am able to put actions plans into place for when symptoms arise or when I am suddenly taken unwell.

In addition, the last holiday also helped me realise the need for a break from seeing the same four walls every day and the same routines we live out; the cruise was a welcome break from constantly being stuck in the house, or held up in my bedroom due to severe symptoms.

It was an opportunity to see new sights and experience things that I could never encounter at home.

Photos from Royal Caribbean Blog

This time around, however, we will be cruising around the Canary Islands and visiting ports in Spain and Portugal also.  It again will be a welcome respite from the stresses of living with a neurological condition, and endless medical appointments, as well as the opportunity to absorb plenty of vitamin D with its many health benefits.

With the first cruise on the new ship being imminent, and therefore being inundated with photographs of the beautiful decor and the many new activities to experience onboard via social media, I am beginning to get very excited about our cruise in September.   I am determined to forget about the disappointments caused by the previous cruise, and even more determined to enjoy and soak up as many new experiences as possible this year.

What about any tips that I could offer for travelling with a chronic illness?  There are plenty that I could offer after my experiences last year but here are some of my top tips:

  • Let the travel company know of your medical condition and any help that you may need.  When booking a cruise, or booking a hotel room, book a wheelchair accessible cabin/room, if a wheelchair is required for the holiday (it may be best to hire one if you do not own your own especially if symptoms such as fatigue is a problem).
  •  Carry all your medications and other necessary items with you in your carry-on luggage.  When cruising, your luggage is taken from you after arriving at the port and you do not see them again until you are in your cabin.  However, with a lot of passengers, onboard delays can occur so any important items are best to pack in your carry-on luggage.  Also, include items such as swimsuits too so you can make full use of the amenities as soon as you are onboard.
  • Expect the best but prepare for the worse.  Chances are, you may not be able to participate in all the activities and trips during the holiday.  So, as a result, prepare for some quality time by yourself in the cabin or hotel room.  Bring books, audio books, MP3 player or anything else you can do to keep yourself entertained whilst resting.  Wi-fi may not be available so perhaps try downloading some movies before you leave in preparation
  • Don’t overdo things.  It can be so easy to get carried away on holiday, and push your limits to keep up with everyone else, but don’t forget to listen to your body and take a break if you need to, because if you don’t you may pay for it later
  • Prepare yourself mentally for leaving and accept your limitations. Experience has taught me that you need to know your limitations and accept them before you leave, as chances are, you will not be able to do everything that you want during the trip and it’s best to accept this before you go and instead of worrying or getting upset by it, instead make the most of everything that you can do and enjoy them
  • Have a great time!
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HAWMC Day 11: A Spoonie and her Faithful Friend…

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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.

Saturday 12th April: Pet Pal 

Write a thank you letter to your furry, feathery, or fishy friend for always being there for you. How have they helped you cope with your health condition?

Dear Honey,

It seems strange writing you this letter, as for you are a dog, and therefore cannot read.  But this is a letter of thanks.  A letter of thanks to you for your many years of love and loyalty that you have not just shown to me, but to the entire family.  A letter to thank you for always being there for me through the good and the bad.

Gorgeous picture of Honey :)
Gorgeous picture of Honey 🙂

Who knew that when we first got you fourteen years ago from The Dog’s Trust that we would have been on this long and arduous journey together.  It is true that even back then, I was ill; suffering from unexplained dizziness and problems with my legs but we had no idea the cause or that it would be long-term.

Even more incredible was the connection that we developed.  Do you remember the times when you suddenly started crying?  We do, and the times we would try to figure out the reason behind it!  And then we noticed the correlation between the crying and the onset of the dizzy spells that I was experiencing – you were warning me when the dizziness was going to start.  It wasn’t just this, of course, which solidified our connection, but also the fainting spells that happened a couple of years after you came into our lives.  I don’t remember the moments before the attack, however, but I just remember coming to and seeing you standing over my body and licking my face.  How clever and loving you are!

Now of course, being diagnosed with a neurological condition which has deteriorated quite significantly since the time we first brought you home with us, a lot has changed.  For instance, I am home a lot more as I am too weak and unwell to leave the house unaided, and in addition, because of the weakness in my legs, I can no longer take you for walks either by myself or with Mum.

This is a picture of Honey on 'Rhiann Watch' on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!
This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!

But what hasn’t changed however, is the love, loyalty and companionship that you show me.  The love that you obviously feel for me; the wag of your tail when you see me, how you bark at me when my legs are too weak and not stopping until I am safely sat on the sofa.  Often my symptoms are severe, and a lot of those days, both Mum and Dad are at work and therefore home alone, but having your presence with me is comforting.  It makes me feel both comforted and protected having you snuggling with me whilst I am lying on our sofa with a  blanket, too weak to move.  Or when the weakness is so severe and stuck in bed, and you will come upstairs regularly and check on me, or lie next to my bed makes me feel loved and well looked after and managed to raise a smile on a bad day.  I feel so guilty on these occasions as I am unable to get up to feed you, and although you do constantly harass me to do so, you never hold it against me that I cannot do so.  You still show me a lot of love and affection.  And I reciprocate; I even love you coming into bed with me, even if you do somehow take up most of the bed!

You have brought so much joy to our family during the last fourteen years; you make us laugh with your silly antics and especially the cheekiness that you are exhume on an almost daily basis.  But most of all I love our cwtches (so cute when you lean against me and tuck your head into my neck) and the kisses that you give when I am feeling at my worst.

I feel so fortunate and grateful that we found you from The Dog’s Trust that September fourteen years ago, although sometimes it feels that you chose us than the other way around.   There is an old saying that ‘a rescue dog loves you more’ and I really think that you are the perfect example as I can’t imagine another dog loving and taking care of me they way you have.  You will always be a loved member of our family.  We certainly will never be able to forget you.  Thank you for everything you have done for me, and always being there when I am in need of comfort.  I know nothing lasts forever, and you are getting old now, but I still hope that we still have several more years ahead of us together.

Lots of love from your loving owner

Rhiann

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