The Struggles Continue….

 

Time for a brand new post; I know I have not written a post in a while, and for that I apologise.  The truth is that for some time now I have been struggling with my condition, and in particular the dizziness which I live.  For whatever reason. the constant dizziness has become much more severe.  I do not know whether the severe dizziness that I have been experiencing is a relapse, as the severe dizziness has happened before, or whether the dizziness is simply getting worse.

 

My reality

 

I have not been able to talk to many people regarding the sudden deterioration in symptoms; I often find it hard to talk about – when I try I just end up crying and in bits afterwards.  Perhaps I find it more difficult to talk to others, such as my family and friends as I do not want to worry them.  On top of this also, is the deterioration with the trouble with my legs; both the weakness and trembling in them have become worse.  The severe trembling and dizziness, however has recently made it very difficult when out; at both the social groups that I attend as well as the days out with my personal assistant.  These symptoms are so troublesome that the places and activities that were so easy for me, has now become much more difficult.  Yesterday, I had difficulty in getting back to the car which was parked further away from the garden centre then we usually park – it was not that much further, but because of the severe trembling in the legs, I almost didn’t make back to the car in one piece.

The wheelchair that I have is obviously a solution when my legs become so severe that they hold me back from doing what I want; but alas the dizziness makes it difficult for me to be able to stay in the chair, as I feel so dizzy even when sitting down.  What am I to do?  A lot of you reading this, may think that I am weird and not able to understand this quandary, heck even I don’t understand it – but unfortunately this is my reality; one in which I face everyday.

Everyone I know keeps suggesting that I go back to the doctors. People constantly ask me to describe the condition and what I go through everyday with it.

But how am I expected to describe something which I do not understand myself?  Even the doctors are unable to understand my condition and its symptoms recently the doctor who has been dealing with my condition and has left the practice that I am registered with and so as a result have had to find a new doctor to deal with. Whenever I do go and see the doctor, however, and report in the deterioration and severity in my symptoms I am often met with puzzlement – which obviously doesn’t inspire much confidence!

Recently, my parents booked the cruise that we have been looking at for a while, and although I am excited and very much looking forward to the holiday, this sudden deterioration in symptoms does make me worry slightly about how I will feel next year.  Will the severe dizziness still afflict me?  Will the dizziness withstand a cruise?   Only going on the cruise will i be able to determine this.  But looking at the silver lining at least it will be an experience I will never forget, and it is these memories that are priceless…

Wordless Wednesday: How I Have Felt Lately…

Sick to Chic!

With all the falls that I have been experiencing lately, the crutch that I bought myself last year has taken quite a battering!  The crutch itself has dents, scratches – some of the damage that has been caused by the falls has even caused some cuts on myself.  Where the paintwork on the crutch has flaked, it has caused the paint to sharpen; and it is these sharpened points that has been causing cuts on my legs and feet when I have had falls in the house.

Also, the anatomical moulded right-handed designs have become uncomfortable, and where it has rubbed against my fingers, a callous has formed there!  So I thought that I would treat myself to a new crutch – one which would be more comfortable and not cut me!  I remembered reading online on a forum that I often visit, that one lady recommended an online store that sells crutches at a reasonable price.  And therefore I headed to Chic Aid Crutches to look at the range that they offered.

And what I found was impressive!  Chic Aid Crutches offers an impressive range of different crutches, including full cuff crutches, half cuff crutches, designer crutches and even folding ones!  And even more impressive is the wide range of colours that are available!  We have all seen the standard NHS crutches – they are heavy, uncomfortable and the grey colour just looks dull and boring.  Using them, feels depressing as they are just not fashionable!  Why should we be sick and be unfashionable with it?  Especially when we have the option to use a bright,  colourful and fashionable mobility aid which feels comfortable, lightweight and what’s more is fun!  It does not feel like a mobility aid but rather a fun fashion accessory!

After purchasing the crutch, the delivery time was fantastic – I only waited a day for it to arrive, and the crutch was also well-packaged and with no damage to the crutch whilst it was in transit.

Lately, I have really come to love the colour orange – its bright, fun and is a colour that instantly cheers me up.  It’s a reminder of a beautiful sunset.  And it’s because of this, I chose an orange colour for my new crutch.  A beautiful and cheerful colour that will look lovely during these Summer months.

My brand new crutch

 

And it has some great features – a padded foam covered handle – which is very comfortable to use and what is even more great is that it doesn’t rub against my finger.  The height can be adjusted in tow places – the height from the floor to the handle, and between the handle and the cuff.  This is great for me, being short!  It is also very lightweight and is quiet when it’s being used; great for when I am in the house and my Dad is in bed after working nights, as the NHS standard crutches can be noisy when being used.  Another fantastic feature and incredibly useful is the black Pivoflex ferrule, which provides increased stability with their ‘flex’ action – a feature that is great for me, due to my balance problems, and so a mobility that aid that provides increased stability really is a must-have feature.

I really love my new crutch and perhaps one day I will buy more from Chic Aid Crutches and look chic and fabulous whilst being sick!

Thank you Chic Aid Crutches!

Wordless Wednesday: Sanctuary from Chronic Illness

Where I often spend my ‘burnout’ days – my bed

HAWMC 2013 Day 30: Recap!

 

 

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:

You made it!  30 posts in 30 days!  Today, write a recap of your experience.  What was your favourite prompt?  Least favourite?  What have you learned? 

Well, I did it!!  For the second consecutive year I have managed to complete all 30 days with no need to use the ‘free-pass’ cards!!  It feels like a huge accomplishment especially as I have experienced several bad days.  Preparation seemed to be the key this year, especially as I am busy with other activities such as the Monday and Wednesdays groups that I am involved with and the day out once a week with my Personal Assistant means that I am not in the house all of the time, so I had to write many of the prompts before the day that it was published.

Just like last year, I immensely enjoyed the month-long writing challenge – I loved the challenge of all the prompts.  The prompts are not only a lot of fun to write but I also feel that the prompts enable us to look and write about our particular health conditions differently than we would normally.  For example, some of the prompts required me to write about topics that I might never would normally.  For example, the topic of burnout was selected to be discussed from one of the prompts, and if it wasn’t for the HAWMC I might never have written about the topic.  One of the prompts that I found particularly challenging was the Acrostic Poem from Day 13 (Acrostic Poem of my Health Condition) – it wasn’t necessarily the subject matter that was challenging as the whole blog is about living with my health condition, but the form itself.  I haven’t written a poem in many years so it was quite a challenge being asked to write one – just glad that I prepared in plenty of time and was able to write a decent attempt!

The prompts like always were a mixture of being, fun, challenging as well as being thought-provoking.  One prompt I really enjoyed, but initially found very challenging was the post regarding Adversity (“The flower that blooms in adversity…”).  I initially found it very difficult to write especially regarding when I bloom best.  However, although I found it challenging, I thought in the end it was one of my favourite and best written post!  I also loved the prompt which asked us to ‘spread the love’ and thank some of our favourite health activists; this was such a great opportunity for me to thank those who have supported me and helped me through some tough times with illness (Sharing the Love!  I would like to thank…).

I would also thankful for the Wordless Wednesday posts, as it gave a break from writing long posts and was fun coming up with creative photographs and drawings to dictate something without using words!  Would love to make this a regular feature but would need some ideas!  If anyone has links or ideas to do this please comment below and share!

Least favourites?  Perhaps some of the prompts that I had written about during previous writing challenges such as the post regarding caregiving (Carers, How to treat those you care for), and discussing favourite social networks (Why I Love to Tweet) to name but two.

Anyhow, regardless of the good and the bad through the experience of this writing challenge it was a challenge that I thoroughly enjoyed and look forward to taking part next year!   Thank you WEGO Health!

What did you think of my posts for the HAWMC?  What were your favourite posts to read?  Any you didn’t enjoy reading?  Loved to hear your views so please feel free to leave any comments/suggestions!

HAWMC 2013 Day 29: Celebrating Awesomeness!

 

 

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:

We all know Health Activists are awesome.  Share three things you love about yourself, things you’re great at, or just want to share.  Don’t undercut or signpost!

This I have to admit is a difficult post for me to write as I am not very good at paying myself compliments.  Often, I a self-deprecating and very rarely think about my positive qualities – I often have to ask people to help me pick out my best qualities as I have no clue!

Recently, I have started tapping into my creative side and making greeting cards.  At first, I started making them for myself to give to relatives and friends during times of celebration.  However, after taking them into my afternoon social group, I instantly had orders from the members asking if I could make some for them to give as cards.  Not only do I find it very relaxing sitting down and making the decopauge cards, it also takes my mind off the pain I experience.  I have had a lot of compliments from people regarding my cards; so at least other people think that  it is something that I am good if I don’t always believe it myself!  Here are some of the cards that I have made:

 

 

Writing is something that I love doing, and this blog has turned into a big passion of mine.  I love sharing my experiences and thoughts with others, and there is nothing more satisfying as a writer than receiving comments from others and telling me that they enjoyed my writing and they were able to relate to what I wrote in that particular post.  I have had the fortune to receive comments on my blog, Facebook or on Twitter how much people enjoy my writing, which means so much.  Writing is something that I have always been good at, and so was the main reason why I decided to start the blog as a way of raising awareness of neurological conditions.

 

 

Another thing that I love is my breadth of my general knowledge!  I love nothing more than playing general knowledge quizzes whether this is watching quizzes on television; playing board games such as Trivial Pursuit or taking part in a pub quiz.  At my local group, one of my nicknames is ‘Quiz Bandit’ as I tend to know the answers to a lot of the questions asked, and many times have seen my team to victory!

 

So there are 3 things that I am good at!  Took me a while to even come up with these – but in the end I managed it!  So, what are some of the things you are good at, or love about yourself?  As ever, please feel free to comment below….

HAWMC 2013 Day 28: You Must Follow These Brilliant People…

 

 

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 is as follows:

Create a must follow list for your community on a single social network.  Share your top 5-10 tweeters, bloggers, or Facebook pages. 

I so wish that I could share some fantastic resources and tweeters who share the same condition in which I live, however, the condition seems to be rare and have yet to meet anyone with the same diagnosis.  However, I have had the pleasure to meet some truly fantastic people through Twitter, and who often sends me words of comfort or support through my own struggles and have become great friends in the process.  So, if you are on Twitter please follow them and find out for yourself how kind and beautiful they all are:

Image Credit: The Daring Librarian @ Flickr

Marissa Christina – @MarissaAbledis

Pamela Sloate – @dystoniamuse

Anya de Longh – @anyadei

Aisha Bukari-Clarke – @AishaJemima

Unseen Magazine – @unseenmaguk

Sarah Levis – @GirlWithTheCane

Chronically Awesome Foundation – @ChronicallyAFnd

Patients Association – @PatientsAssoc

Peggy – @moyamoyagarden

The Spin Sisters – @TheSpinSisters

I have met so many wonderful people on Twitter but I was only able to choose up to 10 to share with you today.  For all those not included, know that I truly value your friendship and kindness you have shown me.  Thank you x

Who are your top tweeters/bloggers/Facebook Pages?  Please get in contact and share them below!