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Regular readers of my blog, and especially those who follow me on social media will know that life recently has been very tough due to the symptoms that are caused by the neurological condition that I am now forced to live with.  The symptoms associated with my neurological condition such as dizziness, fatigue, pain as well as the severe weakness and trembling in the legs have all deteriorated.  And as a  result of this deterioration, it has resulted in the loss in the ability to do a lot of the things that once came so easily, or those activities that I enjoy participating in.  One example, is the great difficulties that I have experienced in visiting our local high street.  Before this sudden deterioration, I found it so easy to be able to park in the town’s car park and walk the moderate distance towards the top end of the town to visit the shops that I like to browse and buy everything that I need.  However, recently due to the deterioration in the symptoms in my legs (the pain, trembling and weakness) even the short walk from the car park to the shops have felt more like the prospect of walking Mount Everest.

Dealing with symptoms can often feel like an uphill battle...
Dealing with symptoms can often feel like an uphill battle…

As a result, my carer has instead had to use the disabled parking bays in the town centre itself, so that I am able to use the amenities that I need to use, and still be able to go to the shops that I like to visit.  This arrangement has been far easier as they are extremely close to all the shops that I regularly shop at, but in all honesty, some days it is still a struggle to go shopping because of the severe weakness and trembling in the legs.  The dizziness, has also caused a very big obstacle in going out because it has become so intense, and has resulted in me having to wear a hat when visiting places (wearing a hat helps to limit the exposure to triggers that can cause vertigo, double vision or make the dizziness worse).

Last week was a particularly bad week, and a trip to town was cancelled after my legs almost gave way in the middle of town.  Instead, because the pain and weakness was so bad, my carer and I returned to the house and watched a film.  It is bad mornings with chronic illness like these which can be difficult for our morale and self-confidence; and very often it can feel that our day is already over thanks to chronic illness, unable to accomplish anything because of debilitating symptoms and so instead we find ourselves spending the rest of a ‘bad day’ spent in bed or lying on the sofa watching a marathon of our favourite TV series (my guilty pleasure of the moment is One Tree Hill).

However, I recently learnt that it does not have to be this way.  I found a blog post that read:

Today is not over yet.

And it is true.  At the time, I wrote off the day that my legs decided not to work properly and had to spend the morning watching a DVD instead of the shopping trip I had planned.  But that was not the end of the day.  After the film, and after I regained enough strength in my legs, my carer and I took a short drive to a nearby coffee shop and had lunch.  It actually turned out to be a lovely trip out and exactly what I needed to take care of myself and my body against the effects that my condition has had on my life.  And perhaps ‘Today is not over yet’ is a mantra that we spoonies need to remember.  Just because a day has started off bad because of the effects of chronic illness does not mean the day will be bad.  It does not even mean that the day is over.

Finding joy can often be like seeing a rainbow appearing behind clouds...
Finding joy can often be like seeing a rainbow appearing behind clouds…

We can find joy in the little things on the bad days – a letter or card from a dear friend landing on the doorstep, a cuddle from a furry friend, a favourite song on the radio, someone making our favourite meal. Our silver linings can come from the smallest of things.

So, our chronic illness may have meant that we have frittered away our time doing as little as possible, however as the quote suggests it does not mean that our day is over.  We are still here and we are still very much alive and as long as we are it is not to late to do something, to do anything.  It can provide the perfect opportunity to pursue some self-care practices in order to take care of not just our physical health but also our psychological health.  A few self-care activities may include:

  • having a soothing bath
  • meditating
  • reading
  • pampering yourself, e.g. getting hair done or even a manicure
  • crafting
  • can even be as simple as setting limits for yourself

Even if you do end up doing something, it may be something that we hadn’t planned on doing or even wanted to do.  However, it might just end up being something we needed or better than originally planned.  Just like my impromptu visit to a local coffee shop.

So next time, you have had a bad start (or at any point of the day, really) to the day and your thought is navigating towards writing the entire day off as a bad one, just remember:

Today is not over yet.

Welcome to another post for the 30 Days, 30 Posts Challenge as part of the WEGO Health Activist Writer’s Month Challenge. It’s Day 16 and today’s prompt says the following:

Pinboard…Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them

For those who are not aware, Pinterest is a ‘virtual pinboard’ and allows users to organise and share photographs that they love or inspire them. Users are also able to browse pinboards created by others who share they particular interests and a great way for discovering new ideas. Pinboards allow users to be able to plan special occasions such as weddings, or ideas for decorating the home or for new recipes.

I have signed up to Pinterest and my username is serenebutterfly for those wanting to have a look at my personal pinboard

This is a tough assignment today – my condition is, as already mentioned is invisible, so finding images that reflect my health focus. This is where Google is going to come in very handy!!

1.

Image: http://reference.medscape.com/features/slideshow/vertigo

The above image shows an MRI, the scan on the left depicts a brain stem lesion which is exactly what is wrong with me. However, it is not necessarily located in the same place as mine, however I thought that this image best showed what was going inside my head – the best way to show my health focus which is obviously my condition. Using an image of an MRI is the best way to illustrate what my specific health focus is – my condition…

2.

Image: http://pinterest.com/pin/126593439495125404/ (Courtesy of Kyle Mills)

Okay so could not find a picture that really defines ‘dizziness’ adequately, I mean it is something that you feel happen to you, and cannot tell if someone is dizzy by looking at them. However, this picture does show what my view is like when experiencing an episode of vertigo – as if the world is moving, and also depicts what my vision is like, quite effectively during these attacks as I very often have visual experiences – things become very out of focus and blurred and even double vision. Excellently portrayed by the image as you are able to see two images of the woman’s face. Closest picture I could find which really summed up the experience of vertigo and visual disturbances…

3.

Okay, so this is the third and final image I have chosen. Again my condition or the symptoms that I experience are not visible, and therefore I have to use images that are a metaphor for what I face on a daily basis. The constant dizziness, is as if my world is always unbalanced, which is portrayed by the rocks being on a tilt. Also, one can never tell when one of the rocks is going to fall off and fall to the ground…This also depicts, in a really clever way the problems with my legs as just like the rocks, I never know when my legs are going to collapse, causing me to fall to the ground…

I thought I would share one more with you, as it is something that made me smile when I found it on Pinterest and something that I can very well relate to because of all the falls that I endure on a daily basis:

So, what do you all think of the images that I have chosen to represent my health focus? Are there any other images that I could have used to represent my condition? If you had to create a pinboard for yourself, what images would you pin?

As always love to hear your views, comments or suggestions…

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