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Yesterday, thanks to the wonders of WordPress, I discovered that it was my second anniversary of my very first blog post entitled ‘An introduction…‘.  After discovering that it was the second anniversary of the start of this blog I contemplated the changes that have happened since the publication of the first post of the blog.  Two years have passed and have now published approximately 225 blog posts since then as well as becoming active on social media, and also becoming involved in projects relating to chronic illness and neurological conditions.  However, on the discovery on my blogiversary it made me consider the past and the changes have occurred since the beginning of writing this blog.

Some of the changes have been good; such as the introduction of a couple of social groups that I now regularly attend; the discovery of a passion for card-making as well as the addition of a personal assistant in my life, which has greatly benefited myself as well as becoming less reliant on my parents.

However, there are also a number of changes that are not so good.  In looking over past blog posts, it made me realise how bad my condition has become.  I suppose, living with illness over a long period, you are not so aware of the changes until you contemplate the past and the reality of your condition as it was then; this could be in the form of looking at past photographs, or re-reading old blog posts or journal entries.  It is no secret, that I have been battling with dizziness since a young child, and although the dizziness was severe two years ago, it really has become so much worse since the start of the blog.

The problems with my legs has also worsened significantly worse since the beginning of ‘My Brain Lesion and Me‘.  At the start of this blogging journey, I had little problems with my legs; although they have always been stiff and had experience discomfort when walking, my mobility was not really affected.  Fast forward two years on, however, and my mobility has significantly worsened, progressing from needing to use a walking stick, to a crutch and now needing to use a wheelchair. And these two years has also seen the introduction of severe trembling in the legs, constant pain and now I have even been experiencing episodes of loss of sensation in them.

However, I am unable to change the past or the present of living with my condition, and it looks like I may have little control on the future.  I am hoping for more information at the end of the month after several more hospital appointments, although I trying not to raise my hopes too high, in case of disappointment.  For now, I will just have to live in the present and attempt to keep positive; to keep writing about my experiences of living with a neurological condition and to live the best life that I possibly can…

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Who knows what the next two years will bring?…

 

I was reading the Weekly Writing Challenge over at WordPress ‘The Daily Post’ and I loved the idea of writing a recipe to describe someone and thought maybe I could use this prompt to write a recipe to describe the life of a chronically ill patient!  So here it goes:

 

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Recipe for a Chronically Ill Person

Main Dish:

4 cups of pain

2 tablespoons of dizziness

3 cups of fatigue

1 teaspoon of depression

2 afternoon naps

8 oz. of determination and strength

Pinch of wobbly legs

2 oz of awesomeness

1 comfortable bed

All the spoons you can find!!

 

 

To Garnish (optional): 

1 wheelchair

6 falls

1 awesome carer

1 pet to comfort you during times of sadness and misery

 

Instructions:

Mix all the ingredients well in a very large bowl with a wooden spoon.  Stir well.  When everything is combined; pour into a dish and place in the fridge overnight.  If desired, add the garnish and serve!

 

 

 

 

So, if you were to write a recipe for a chronically ill person, what ingredients would you suggest for it?  Let me know your thoughts and comment below!

 

Hey Everyone

I hope you are all well as possible (AWAP!).  I haven’t been well recently so haven’t been able to keep up or take any photographs for the Weekly Photo Challenge, but as I am feeling slightly better thought I would start back up as it’s an excellent way of getting the creative juices flowing!  This week’s challenge is solitary which is defined as ‘the state of being alone’.  The photograph that I have chosen is taken from my sick bed when I was so unwell that I my legs were so weak, and I was feeling so dizzy and sick that I was confined to my bed.  And so my faithful dog, Honey stayed with me lying on the floor by my bedroom door protecting me.

 

Have to say, that this week’s challenge was a tough one!! According to the dictionary, merge is defined as ‘the combination or cause to combine a single entity’ or ‘to blend gradually into something else so as to become indistinguishable from it.’

The following photograph was taken by myself during a holiday to Devon during a long walk (when I was able!) with Mum and the dog and thought it was the most beautiful view! I love how the landscape and the sea merges together so you are not able to see where one ends and the other begins!

 

There are many definitions of wrong.  These include:

a) not in accordance with what is morally right or good

b) deviating from truth or fact; erroneous

c) not correct in judgement, opinion, method, etc

d) not proper or usual;  not in accordance with requirements or recommended practice

e) out of order; awry; amiss

Many people make false judgements based on appearance, colour of skin, race, gender and so on.  Below is a picture of me on a night out:

Looking at the picture you might assume that I am healthy, that there is nothing wrong at all in my life.  However, this would be wrong…

This was taken on a rare night out; usually I am too unwell to go out in the evening; instead putting on a pair or pyjamas and watching television cocooned in my snuggie.  Often my legs are far too weak to be able to enjoy a good night out, too dizzy and sick to sit in a restaurant with lots of stimulation surrounding me.

This is also a problem with the disability benefits assessments; too many false judgements are made; on one occasion where I had failed a medical, the report commented on how I looked well, dressed smartly.  So, does that mean that just because I suffer from a chronic illness and am disabled that I cannot dress in nice clothes and look smart?  Seeing me for approximately 20 minutes which mainly involves sitting down, that made a judgement that I was able to walk a certain distance, where in reality it was completely inaccurate, instead my legs give way and left unable to walk very far.

I think it is an important lesson for us all; not to judge people on a first meeting or just by looking at them – as the saying goes ‘When you assume , you make an “ass” out of “u” and “me”! 

Love to know your thoughts and comments – what does the word ‘wrong’ look like to you?

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