Category

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:

Sunday Dinner…Who are 5 people you’d love to have dinner with (living or deceased) and why?

I don’t know about all of you, but Sunday Dinners are possibly the best family dinner of the week.  Every Sunday, my small family and I make the effort to sit around the dinner table and eat our dinner together. So who would be my favourite dinner guests that I would enjoy a lovely Sunday dinner with?

As a Sunday dinner is a time to spend with people who are important to you, I have therefore chosen the following people:

  1. My best friend Aisha
  2. Another great friend Anya (blogs over at ‘The Patient Patient
  3. Another great friend I have made along the way of my journey with chronic illness Hayley who has set up the fantastic community over at ‘Neuro Nula
  4. My Mum
  5. A great friend Claire who I regularly see IRL (in real-life)

A lot of people, I am sure would choose favourite celebrities whom they admire or those who they find attractive, I however, wanted to choose people whom I know and have supported me throughout my journey with illness.

Each of the people on my list above, and have all helped and supported me in very different ways.  Of course, my Mum is a person whom I see everyday, and share many meals such as Sunday dinner.  However, she is one person whom I would immediately choose for my dream dinner party, as she is a person I adore and admire.  She is a fantastic Mother, and a person who always supports me in everything I do, as well as doing things to help me when my condition is very bad, and does so with no complaints.  But more than that, she is a fun and wonderful person.

Mum is a wonderful carer who always looks after me; even sometimes neglecting herself
Mum is a wonderful carer who always looks after me; even sometimes neglecting herself

Aisha, Anya and Hayley are all people whom I have met on Twitter, however, although we have no met in real-life (but would love to if the opportunity arose) it does not make them any the less great friends.  All these girls have experience of illness themselves, and so they are a fantastic support system to have in place.  But most of all, I really appreciate the support that they have shown, and the friendships that we have developed mean the world.  Aisha is the most amazing friend that I have ever known; despite living with chronic illness herself, she nevertheless always makes the effort to check in on me to see how I am feeling, and is constantly thinking of ways to ease the symptoms that I am experiencing.  Furthermore, I will never forget the most beautiful bouquet of flowers that arrived at my house on my birthday from her.  These flowers instantly put a smile on my face and made the day so special.  I cannot express how much she means to me.

Beautiful flowers from the most wonderful friend :)
Beautiful flowers from the most wonderful friend 🙂

Anya is another wonderful friend who has always supported both me and this blog; and when I am experiencing a bad flare in my condition she sends me a lovely message on Twitter.  Receiving a message on the bad says really helps, and although cannot ease the symptoms, it does however remind you that you are not alone in this journey with chronic illness.  And furthermore, I will never forge the lovely cards and packages that have arrived unexpectedly on my doorstep  – a lovely gesture and something which always brightens the day and puts a smile on my face.

Then there is, Hayley, whom I have gotten to know through her project organising a community for those with neurological conditions.  We have been friends for a short time, but I will always remember the support that she has shown in not only me but also the blog and my writing in general.  Furthermore, she has also trusted in my judgement and asks my opinion on aspects of the Neuro Nula community, and has trusted me in the social media aspect of the community.  She is a friend that has made me feel valued given me a purpose in life, and for that I can never thank her enough.

And finally Claire – she has been the most wonderful and generous friend.  For example, she invited me to stay with her and her family whilst my parents were away for the weekend.  Furthermore, I will always cherish our nights out, mainly to Harvester’s and the wonderful meals out which we have shared.  Often, these meals have come at exactly the right time; when my life with my condition and have been tough, and just being able to get out of the house, with a fun and supportive friend has been exactly what I have needed.  Me and Claire share such a great laugh when we go out together, and really appreciate the ability to do so and be able to forget all my troubles and to some extent the symptoms that I live with, even for a short time.  Thank you Claire.

These five women mean the world to me and there is no one else in the world who would make a dinner party more wonderful than them ( no, not even Tom Hiddleston!).

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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.

The first prompt reads as given:

Superpower Day…It’s a bird, it’s a plane, it’s…you!  If you had a superpower – what would it be?  How would you use it?

I am sure that the majority of people who are asked this very question, they would answer with hypothetical superpowers such as invisibility, flying or the ability to read minds.  However, being a spoonie, I would like a superpower which is rather ordinary and mundane – and that superpower would be the ability of having endless energy.

Spoonie Superhero - looks just like you and me but with lots of energy!
Spoonie Superhero – looks just like you and me but with lots of energy!

One of the most common symptoms of a lot of chronic illnesses is fatigue.  Fatigue being defined as “extreme tiredness“.   As a result of fatigue, energy levels are severely reduced and in turn activity levels are also severely reduced.  All the chores that you once could easily complete, now feels as if you are attempting to climb an impossible mountain.  And as you are no longer able to complete as many (or sometimes no) chores, we are often very reliant on others to do things for us – such as cleaning, doing the shopping, cooking and so on.

This can often feel very demoralising , especially when being young and seeing others’ your age going out partying for hours on end and still being able to get up the next day and head for work, and there you are unable to complete small chores around the home. Therefore, the one superpower that I would choose to have over any other, is simply the power of having endless energy.  Being able to have the energy to be able to do everything that I would like to do, instead of completing something and then having no energy to do anything else for the rest of the day.  Even to be able to do the housework for my Mother and feeling that I have done something  to take the added burden away from her, and generally feel that I have accomplished something would booster my self-esteem and make me feel valued.

Recently, the fatigue that I have been experiencing has been very bad – after going out with my carer shopping, going for coffee or to the gym, I am absolutely worn out; and at times have changed straight into a comfortable pair of pyjamas and having a nap!  And I am finding that I am even feeling the effects of going out the next day with no energy to be able to do anything.

So, wouldn’t it be lovely just to have endless amounts of energy instead of being so tired that you have no energy to be able to do anything?  Imagine the freedom that could come from that…

 

What would you do if you had endless energy? Feel free to comment below.

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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:

Theme Song…Imagine your health focus or blog is getting its own theme song.  Think “Eye of the Tiger” for Rocky Balboa.  What would the lyrics be?  What type of music would it be played to?

 

This is a tough question…how do you find a theme song for a condition, which is for one unusual and rare, and secondly one in which you do not entirely understand yourself?

Then, I though that I would base my choice of theme song on the experience of living with my particular condition.  For example, the weakness in my leg; this is one of my main symptoms and one which causes the greatest burden in my life.  The burden that it places, is largely due to the severe weakness and trembling in the legs – for example, I am unable to stand for very long and are known for giving way on me without any warning and at the most inconvenient times.  This has led to many falls in public; as well as falls down the stairs and even whilst walking up the stairs!  These falls have been increasing in number recently, you can read a previous post entitled ‘Falling Down a Vortex‘ which describes my experience of my condition as it is currently, as well as describing a recent fall down the stairs I had in which my Kindle bared the brunt of the damage as it is beyond repair as a result.

The majority of the time after a fall, I am left unable to get straight back up because of the fatigue and weakness in my body, that the condition has left me with.  However, no matter how long it takes me to recover from a fall, I do eventually rise and get back up.  And so, that is the reason why I selected the one-hit wonder ‘Tubthumping (I Get Knocked Down) by Chumbawamba) as the theme song for my condition.  Perhaps not the entire song, mind you (especially as it is a song about drinking and getting drunk! Honestly my falls are because of a medical condition and not because I am inebriated), but just the following lyrics taken from the song:

I get knocked down
But I get up again
You’re never going to keep me down

 

These lyrics, in my opinion, reflects life with any chronic illness.  Chronic illness, forces us to be knocked down a lot of the time  by worsening symptoms, as well as being knocked down emotionally.  But just as the song suggests, we eventually get up again.  We are all  fighters.  We are all survivors.  And as fighters and survivors we never allow our illnesses beat us and keep us down for long.

The song is also extremely catchy, and just like any catchy song, it is one you cannot get out of your head – just like chronic illnesses.  We are unable to forget about it; and it is in our heads constantly, just like an upbeat unforgettable pop song!

Here is a video of the said song for you to enjoy!:

 

As a note, I would like the opportunity to publicly thank Amazon UK who after hearing about my accident and my broken Kindle, very kindly offered a replacement one free of charge!  It was so lovely of them and cannot thank them enough for their amazing generosity!

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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.

The first prompt reads as given:

Keep Calm and Carry On…Write and create your own “Keep Calm and Carry On” poster.  Try to make it about your own condition!  You can then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

 

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I have chosen this particular phrase for my own ‘Keep Calm’ poster as it reflects my life with my condition at this time in my life.  As regular readers of my blog will know that my condition, and a symptom known as spastic paraparesis causes severe stiffness and weakness in my legs; as a result, my legs will often give way and often without any notice.  In addition, the stiffness often causes a lot of pain (when I have feeling in them, that is!) and therefore unable to walk very far.  As these symptoms have been increasing in severity, I am therefore required to use a wheelchair when I am out for long periods of time, or somewhere which requires a lot of walking.

The dizziness, that I experience however, makes it feel very uncomfortable to use the wheelchair due to the motion upsetting my vision and causing severe dizziness and vertigo.  But, as my legs are often too weak and the pain and trembling make it considerably difficult to walk, then I need to disregard the dizziness, and use the wheelchair anyway.

In nearly four weeks, I am going on a cruise, and of course, part of the holiday is going on excursions to some of the cities that we are visiting.  In doing so, it requires a lot of walking and due to the severity of the symptoms, I am going to have to use the wheelchair no matter how bad the dizziness is – and therefore I will have to just ‘Keep Calm and Carry on Wheelin’!

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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 is as follows:

Wordless Wednesday…We all know a picture paints a 1,000 words.  Post/share a picture that relays a message or story to the viewer.

 

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Image found on Pinterest

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