August 2017 Linkup Party with A Chronic Voice: Missing, Appreciating, Striving, Releasing, Eating

One of my favourite chronic illness bloggers, Sheryl from ‘A Chronic Voice’ has started a link up party! These parties are a monthly get together for any bloggers who live with or have experience with a chronic illness.  These will provide opportunities to ‘meet,’ share thoughts, information and learn from one another.

To gain more information about these parties and information on how to participate then you can visit Sheryl’s original post here.

The prompts for this month are:

  • Missing
  • Appreciating
  • Striving
  • Releasing
  • Eating

Missing: My late dog, Honey 

I’m not going to lie, but I have been struggling these past couples of months and been spending more time alone in the house.  And it’s during these times that I have been really missing the company of our late dog, Honey.  Although she may have been pretty useless if something happened to me such as a fall (which have also been increasing) however the mere presence of having her around was comforting.  Of course, I also miss her copious amounts of hugs and kisses which never failed to make a bad day better.

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Appreciating: Books

In my last post, I wrote about my love of books and reading.  As the pain and relentless trembling in the legs have worsened recently, I appreciate the wonderful world of books for allowing me to escape from the monotony of chronic pain and the other symptoms that have taken permanent residence in my everyday life.  These books, the many that I have read so far this year has taken to many different places that my body is physically unable to go.  It has proven to be a great distraction for me on the bad days, which unfortunately have been many.  And for that, I have been so very grateful.

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Striving: Striving for Progress 

As I have already mentioned, things have been challenging in regards to my health which is really frustrating especially as I take steps to try and improve it – I go to a local gym in the attempts to strengthen my muscles (which hasn’t happened). Or at the least ensure that the weakness does not get any worse.  I also ensure that I spend time everyday to complete the vestibular rehabilitation exercises that I was given at the hospital to help with the dizziness and vertigo as well as the physiotherapy exercises to improve the functioning in my legs.  So far, they have been unsuccessful, but still, I persevere in the hopes of improving my situation.  Like all of us, I am never going to achieve perfection, but I hope one day soon I manage to attain progress and improvement.

Releasing: Positive Thoughts 

As a writer myself, I love words, and I love finding new and uplifting quotes to decorate my bedroom to raise my spirits and inspire me on my bad days, and those days I am stuck in bed.  I also own several pieces of jewellery that have a positive quote or mantra that I can wear and remind myself during difficult times.  I release these positive thoughts to elevate my mood.  I have even found some cards that have positive and inspiring quotes on them that I have even used to send to others also living with chronic illness and disabilities (such as the fun and brilliant #spooniepost) to help remind them of everything that is positive during their own struggles.

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Eating: Homemade Pizza

In our attempts to eat healthier, my Mum and I have been spending some time experimenting with some of the recipes from the beautiful cookbook ‘Cook Happy, Cook Healthy‘ by Fearne Cotton.  Our favourite meal from this book has been the Healthy Homemade Pizza which uses spelt flour instead of regular white flour due to its nutritious qualities.  I love this, as it’s surprisingly easy to make and it doesn’t leave your stomach feeling heavy and stodgy afterward, which I often get after indulging in a takeaway pizza.  It has also been enjoyable to make (despite all the mess!), and I have felt incredibly accomplished while enjoying the fruits of our labour!

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The Magic of Reading

In a recent post, I wrote about my passion for television shows and the distraction that they provide from the persistent chronic pain that has been ravaging throughout my legs recently.  In this post, I also shared my favourite box sets to watch when incapacitated by chronic pain or the many other symptoms that occur when living with a neurological condition.

Yes, television and films are one of my primary passions. However, it is not my only passion.  My first love, and one which has followed me throughout my life since childhood is reading.  Books are something that I have always collected, amassing goodness knows how many over the years and are found all over my home, especially in my bedroom! Many books I donate to charity shops or pass them along to those whom I know would love it as much as I did, but still, I amass so many books!

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The problem of being a massive bookworm!

Like many, I hate getting lost especially in unfamiliar places.  But I can spend many hours perusing the shelves of libraries or bookshops that times seems to slip away from me, and wouldn’t notice if I did get lost, or lost sight of my companion.

As a young child as much as my Mum tried to get to engage in other activities such as colouring or puzzles, for example, I quickly became bored, and I once turned to the safety and magic that books provided.  Many of the photographs of me as a young child, I can be seen clutching a book, losing myself in the words and pictures on the page.  As we have now established my condition whether genetic or due to another organic cause, was from birth, I wonder if I retreated into books as a way of dealing with symptoms such as pain that I could not yet verbalise. 

Nearly 30 years later and I am continuing to use books and reading as means of distraction from the effects of chronic illness.  Recently I came across a quote on Pinterest that read ‘Reading gives us somewhere to go when we have to stay where we are.’ And this quote is incredibly apt for someone living with a chronic illness as there are many times in which I I am incapacitated by one or more of the many symptoms that come with living with this neurological condition that I live with day in and day out.  Weak legs that can barely carry me into the next room forces me to lie on my bed, contained within the same four walls that I am compelled to spend most of my time anyway. Days like these I am unable to go anywhere or do anything, and so, I find solace in the written word.

Escapism. A place where I can forget my predicament, and everything that chronic illness has given and taken away from me.  Escapism from the vast number of symptoms that are plaguing me.  But books are not only able to take you away from everything that is bothering you, but they can also take you places.  

Books are like a unique magic carpet ride, transporting you to far away places, places you’ve always wanted to go and experience but which current circumstances prevent you from doing so.  After seeing many pictures and heard stories from those who have been there, Prague has been on my ‘bucket list’ of places that I would love to visit some day.  However, as I’m unable to fly due or cope with large airports, this neurological condition has prevented me from ticking it off my list.

Last year, I read the beautiful ‘A Year and a Day’ from author Isabelle Broom in which a large chunk of the story takes place in this very city.  The way Isabelle writes, and the exquisite level of detail with which she describes Prague and its unique landmarks it made me feel that I had been there and experienced the city for myself.   OK, so it may not be like experiencing travelling firsthand, but when circumstances prevent you from being able to move from where you are, books are the next best thing.  In fact, all of Broom’s books give you major wanderlust as each novel has taken place in a different, exotic locations, and each place beautifully and meticulously described, making you want to grab your passport and book flights immediately. 

 And it’s not only places that exist now that books allow you to visit; historical fiction allows you to visit and experience places that existed many years ago (or at least what it was like from the author’s perspective). But very often, and for me anyway I want to be uplifted.  A story to remind me of the beauty and wonder of the world; to comfort and reassure myself that despite chronic pain there is still hope and much to be grateful for.

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Reading can give you real wanderlust!

In books, we can be whoever we want to be.  We don’t have to sick, confined to bed and in constant pain.  We can be the hero, the warrior, the woman who eventually finds love and her happily ever after.  Getting lost in these worlds, we no longer feel the pain that was slowly dragging us down into a dark abyss.  We no longer have to fight against our bodies.  These books that are on my bedside table allows me to experience a snapshot of normality; one in which I am independent, confident.  No longer a burden on others.

Books are a magical portal allowing us to escape from our lives.  Taking us away from this world of sickness – time spent in bed, mobility aids, hospital appointments, and medications.  Books can allow us to find out who we wish we could be.  For many, reading is merely a hobby, a way of filling time, or for light entertainment.  But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from chronic illness there is magic and power in those printed words.

Does anyone else love to read? What books do you enjoy; are there any that provide comfort and sanctuary away from life with chronic illness?

And let me know of any great book recommendations that you have.

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Finding hobbies and interests in the midst of illness and incapacitation…

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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:

Hobbies…We at WEGO Health love hobbies.  Tell us, what are YOUR hobbies?  Are you a rock collector?  Scrapbooking?  Photography?  Dancer?  Share your talents.  (Pictures encouraged!)

Battling fatigue, dizziness, trembling and weakness in the legs can make it extremely difficult to take part in hobbies.  That it not to say I do not have any hobbies.  One of my loves is reading; ever since I was a child I was a bookworm and loved reading fiction books that will transport me to different places and times.  Or books just to escape from the reality of pain, dizziness and depression.  The love of reading, fortunately has not left me and I am a proud owner of a large number of books.  Those who know me, will already know that my favourite author is Jodi Picoult.  I have at least two shelves in my bedroom dedicated just to her books.  I love her writing style; the fact that each chapter is narrated by a different character enabling the reader to consider both sides of an argument and allowing the reader to determine their own opinions on the subject matter at hand.  Each book is thought-provoking, deep and thoroughly researched.  In my opinion, my love of reading, especially my recent devouring of novels are a result of the weakness and trembling in my legs.  Due to the mobility problems that are a result of these particular symptoms mean that walking can be difficult, sometimes even I am unable to leave my bed because of them, and so it is in these moments that my love of books are a real blessing, as it a hobby that I can take part in bed or wherever I am stuck with my uncooperative legs.

Another hobby of mine is collecting butterflies.  As a lot of my followers and readers of the blog will know that I am a big lover of butterflies.  In my opinion, butterflies are beautiful; the bright and colourful colours of their wings, but also they are a sign of hope.  The hope that something beautiful can come from the end of an old life.  For someone with a chronic illness like myself, it really symbolises hope that despite being diagnosed with a long-term health condition it is not the end and something positive can still be found.  This is beautifully summed up by  the proverb “Just when the caterpillar thought the world was over, it became a butterfly”.  I have a piece of artwork which encompasses this very proverb within the piece.  It’s a lovely piece of artwork and I have near it my bed as a positive reminder that good things will still happen despite having a chronic illness.

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In addition to the piece of artwork, butterflies can be found everywhere in my bedroom!  A butterfly clip on my curtains, a photo frame adorned with them and even on my wallpaper!  I have just recently bought some butterfly LED lights to hang around my headboard.  The lights are pretty and colourful and make a bad day a little better.  As a symbol of hope and change, in my opinion butterflies are a perfect addition to be included in my own personal and private sanctuary.  A sanctuary in which I can recuperate on my bad days, and just get away from everything.  It’s a room which I spend a lot of time, so to make it as lovely and positive as possible is in my opinion very important.

Another hobby of mine, which I have been unable to do for a while because of trembling in my hands is card making.  I love making intricate decopauge cards.  It not only is it fun but doing them takes my mind off my pain and the dizziness that greatly affects my daily life. Again it is something that I have found to do despite my condition and one which I am still able to do even when my legs are too weak that I cannot stand or walk.  I am still able to drag to a table and chair and make cards despite the severe weakness and trembling. I like making them for friends and family for special occasions such as birthdays but I have also been asked to make them for others too.  It is a lovely hobby to create something both beautiful and special.  Here are some examples of the cards that I have made:

NHBPM Day Five: Giving Thanks!

Today’s prompt is all about giving thanks for what we are grateful for; or what we are excited about or inspired by.  Thought I would cover all three!!

I am grateful for…

  • Firstly, I would say that I am grateful for the good days that I do have.  The good days seem to be rare these days, but I am grateful for when they do come around.  Having some many bad days, and feeling unwell, fatigued and weak; as if though if everything is an effort; so when good days present themselves, boy are you grateful!!  Having a little more energy to do chores, legs being stronger, and not as dizzy is a real blessing; and means that I can accomplish more and manage to have a little bit of fun!!
  • My new wheelchair: I am giving thanks to this new mobility aid, as it will enable me to be able to get out of the house a lot more, and more importantly it will enable me to stay out for longer.  Before I acquired the wheelchair, I was only able to go out for short periods of time due to the severe weakness in my legs, and especially as they give way if I am on my feet for very long.  Therefore, much of my time was spent in the house, much of the time alone.  Now I have the wheelchair however, I can go out for full day trips taking in shopping, or local tourist attractions.  Looking forward to it!
  • My family and my dog!: They have to be the biggest thing that I am grateful for – whenever I am unwell or feeling down, they are always there to pick me up and comfort me.  If I need something or need to go somewhere then they my parents will pick what I need up when they are out, or take me to appointments or wherever I need or want to go. They are all simply the best!

I am inspired by:

  • Other bloggers: I love to read other bloggers and health activists blogs.  Every one that I read are truly inspiring and shows a lot of strength and courage to spread awareness of their particular condition, as well as talking and discussing the painful or unpleasant symptoms that each of us face.  It would be so easy to just simply hide away and curl up in the duvet when chronically sick, but all health bloggers and health activists want to make people more aware and to understand their particular health condition (or the condition their loved one is faced with) and to provide support to those who are also living with the same condition – truly an altruistic act!
  • Reading – I absolutely adore reading – especially as my mobility problems have become worse and cannot move around as easily, so is truly blissful to be able to snuggle up with a great book.  Love those books that are able to transform you to different worlds, or experience other cultures – sometimes it’s as if you are taking a holiday without leaving your home!
  • Nature: I love how beautiful nature can be – the bright bold colours of flowers such as sunflowers or peony daisies, the different patterns and colours on butterflies.  Research has also found that flowers can actually reduce depression! Now if that isn’t a great reason to buy some flowers for a sick friend, I don’t know what is!

I am excited by:

  • I absolutely adore the writer Jodi Picoult and actually own every one of her 19 books, so one thing that I am definitely excited about is the release of her latest novel, usually released in March or April every year.  I always pre-order the latest release, and look forward for when the book gets delivered to me so I can start to devour it!
  • I get excited sitting down and relaxing in front of my favourite television programmes – it feels like an event, and particularly love the American TV dramas such as CSI, Grey’s Anatomy and Bones.
  • Volunteering – I enjoy and get excited by going down to volunteer at a local mental health resource centre every week, and feels really worthwhile giving a few hours of my time to help others

A few of my favourite things!…

What are the 3 things that you are thankful for, or inspired by or those things that get you excited?

HAWMC Day 13: 10 Things I Couldn’t Live Without….

Hello, again!!  Another day, and another post for the WEGO Health Activist Writer’s Month Challenge.  Ready?  Today’s prompt reads as follows:

10 things I couldn’t live without…Write a list of the 10 things you need (or love) most…

Another challenge that sounds so easy, but when sitting down and trying to complete it is actually quite difficult.  I presume that things such as food, water, air don’t have to be included as these are things that everyone needs to survive and live.  This challenge seems much more personal…things which I probably could live without, but things which make my life better…

So here’s my Top 10 Things I Love Most or Couldn’t Live Without (and in no particular order!):

My Parents – an obvious first choice, as they are the most amazing parents – supportive and caring.  They are both my rocks and have been with me through the good and bad times, and Dad without moaning, drives to appointments or wherever I need to go, or if I need to go to the shops for something, and when he’s not working will go out and buy me lunch which is a great help especially when my legs are feeling particularly weak so don’t have to worry about standing to make myself something to eat.  And Mum is super brilliant – helping me out whenever, phoning to check on me if they are both working and I’m alone in the house.  Mum is also the greatest person to talk to whenever I am feeling down or having a bad day, and we also have a great time together on the rare days we go out shopping together, or even staying in the house and watching a film.  No words can express my gratitude to them or how much I love them…
My Dog – my dog Honey, although crazy and unbelievably annoying at times (you should see her whenever people come over, particularly when they leave!!).  However, she is also the most sweetest, caring and loyal dog – if I’m on my own and have a fall she is there by my side straight away making sure that I’m OK.  Or, if I’m having a particularly bad day, and balance is bad and my legs are very weak she is constantly following me, and never wants to leave me out of her sights.  And if I’m bad, and lying in bed or if I’m on my computer, she will lie down beside my bed, or on the bed, or lie beside my computer chair.  Once I fell whilst on my own, and was unable to get up afterwards, and she lay down beside me the whole time, until Mum came home approximately 20 minutes later, soon as she came through the door Honey rushed to her to alert her that I needed help.  She is a super dog!!

Other family members – As with my parents, also couldn’t live without other members of my family, all of whom are also supportive and help whenever they can.  I have stayed with an Aunt and Uncle of mine when my parents have gone away on holiday, as couldn’t cope on my own for the duration that they would be away, and so they kindly took me in and looked after me in their absence…

My Crutch – My crutch is my main mobility aid which I am finding that I am becoming more reliant upon.  Whenever I am out of the house, I constantly make sure that I have my crutch with me as due to the dizziness and problems with my balance, I find that it is something that helps ground me.  And also due to the weakness in my legs, the crutch is incredibly useful to help keep me somewhat upright whenever my legs buckle or give way.  And it means that I can have somewhat more independence in the sense that I do not constantly have to hold onto somebody when out…

Online Friends and Community – The girls who I have met online are also something I can not live without now that I have met them.  It’s lovely to have finally found a group of amazing and special people, who I count upon during the good and bad times…who can understand what I am going through.  And it’s lovely that I am able to talk to them online via Skype and we can share our problems, or triumphs and have someone on the end of the computer to talk too when going through a horrible time of it, and know there is someone there who understands.  Love you guys and a special shout out to Marissa, Theresa, Lynda and Michele…

My Computer – Another love of mine and something that I couldn’t live without.  It enables me to buy things that I need such as new clothes, books or DVD’s, as I am not always able to get to the shops to buy these, especially long shopping trips due to the weakness in my legs and the inability to stand for very long.  As I found recently, when I have had the rare chance to get out, not all clothes shops even have benches or seats in their changing rooms, which I need to use, and as a result had a few falls whilst trying some clothes on – online shopping makes it so much easier in that I can order clothes and have them sent to me and can try them on at home.  Also enables me to Skype with friends who I have made online and who are very special to me, and other chores such as paying rent or researching and of course writing the blog!!…

My extensive DVD Boxset Collection – Yes, I have quite the Boxset Collection in my possession – CSI, Bones, Criminal Minds, Grey’s Anatomy, Private Practice and the rest.  But these are great at keeping me occupied during the times I am alone, stuck inside the house, or to give me escapism from my illness.  They also come in handy, on the ‘very bad days’ when my legs are so weak, and I am feeling very bad that I cannot get out of bed, and so they are excellent at keeping me occupied and entertained during those time…

Music – Yes, music is another passion of mine.  I love all different types – pop, rock, jazz, blues.  I listen to it when doing chores, or am stuck in bed, when I’m on the computer, to remember memories from the past or to create new ones. Music to make me happy or to wallow in when feeling sad.

Twitter and Facebook – I probably could live without these, but these are excellent resources for finding friends new and old, for keeping in touch with friends or family living near or far, or for generally keeping in touch with the latest news or gossip.  I use it a lot for the support group aspect – for making new friends who may be experiencing similar problems as me.  They are also fantastic for reaching out to different companies or for finding organisations which may be able to provide support or help. Also, a great tool for spreading the words of my blog and to let people know when there is a new post up…

Books – I could not live without my books…especially my Jodi Picoult novels as I adore all of her work and is a writer I really admire.  Love books which can provide escapism, to take you off and wonder different countries or worlds. Books which explore the past, present and future.  And especially, as with Jodi Picoult books, ones which make you think and question different moral and ethical questions.  If there are any avid readers out there, I would thoroughly recommend Jodi Picoult’s works!!  And there are an extensive number of books, to help you learn help you with particular problems or concerns.  Having a chronic and invisible illness can be so tough, knowing that there isn’t a cure out there or no treatments that can really help, so I have found a book called ‘Sick and Tired of Feeling Sick and Tired’…a books which provides hope and coping strategies for those like me suffering from an invisible chronic illness, and how to deal with the emotions and difficulties that come with living with them.  A book that has also been recommended to me is ‘How to Be Sick by Toni Bernhard.  All books mentioned can be found at Amazon.com (US), Amazon.ca (Canada) or Amazon.co.uk (UK).

So those are my Top 10 of things that I couldn’t live without, what are yours?

All comments welcome….