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12 Days of Being ‘Chronically’ Thankful

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Hey Everyone

How are you all doing?  I hope everyone’s preparations for the Holidays are going well.  I noticed on Facebook  that someone I follow added this to her wall:

 

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I thought this was such a great idea, that I have decided to incorporated it into my blog.  Being unwell the majority of the time is exceptionally hard – if is often an uphill battle some days just to get out of bed, or to complete those chores that need doing.  There are instances when it seems that you are unable to cope when symptoms are just so bad.  So, it is critically important to remember the little things that we are thankful for, those little things which makes it easier for us to cope, or simply by putting a smile on our face during those bad days.

As you can see from the above image, for every day for 12 days we are asked to name something that we are thankful for in each of the 12 categories.  The first category is ‘song’.

So what song am I ‘chronically’ thankful for?  Well, there are so many songs that are out there which I love, puts a smile on my face or helps me remember a time where I was happy.  But I would have to nominate the Lady Gaga hit ‘Born This Way’ as a song which makes me thankful.

It is a beautiful reminder that we are all different, and that those differences which makes us unique are also those which makes us special and beautiful.  I often will listen to the song on those bad days and be reminded that it is OK to be different from others.

Living with a chronic illness like mine, a neurological condition which can produce many unusual and invisible symptoms such as dizziness, legs which suddenly collapse with no warning and a dislike to high ceilings, it can often make me feel really odd or have even called myself a ‘freak’; a comment I have also heard from others.  So to have a song which reminds me that I am not, and it is these differences from others which makes me a snowflake – unique and beautiful.

And that makes me thankful!

 

 

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NHBPM Day 30: Recap

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Well the ‘National Health Blog Post Month’ is officially over.

I would like to thank WEGO Health for providing all of the wonderful prompts for the entire month.

I would also like to thank all my readers who commented on Facebook, Twitter or on the blog itself.

It has been a very tough month of writing, especially because at the same time I have also been busy with volunteering, as well as my group and going out with my Personal Assistant, so much of my writing has happened on the days in which I am free.  This has involved much organisation, preparation and hours at my computer typing away!

I would like to say that I am proud that I have managed to write for every single day for the month of November – not even needing to use any of the free passes that were given to us at the start of the month, even though at times I really did not feel like writing I wanted to continue and complete the entire 30 days so I would feel that I have achieved something.

This challenge has had a great mix of fun topics such as ‘Sneak Peek in my Bag‘; ‘Giving Thanks‘ and ‘Flag for my Community‘ through to the more emotive topics, for example ‘O Health! What do I think of thee? Let Me Count the Ways…‘ and the ‘Book Report! Tying it to My Life!‘, as well as the topics that relate to health and the health conditions in which us health activists live with and has given us a chance to educate people on how these conditions impact upon our life, such as the ‘The Ever Changing Goal Posts‘, ‘Being there for someone with a chronic illness‘ and the related post ‘How to care someone with my condition‘ and a post regarding why the chronically ill love the internet.

Along the way, there have also been many prompts that have sparked though-provoking debates, as well as reflecting on the issues that affect daily life with chromic illness, which has been effective in spreading awareness and making people more aware.  Some of these issues that were raised includes:

 

I would love to know your thoughts on the ‘National Health Blog Post Month’- what did you think of the prompts and subject areas that I have written about during the past 30 days?  What did you think the most enjoyable posts was?  And which posts did you not enjoy?  Have you any criticisms or suggestions on how any part of the NHBPM could be improved on for next year?

Please leave any comments or suggestions below!  And thank you so much for all your time reading and commenting on my posts!  I am going to take a nice long break now!!

Until next time….

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NHBPM Day Twenty-Nine: “If I could accomplish one thing in 2013 it would be…”

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Well, everyone welcome to another post of the WEGO Health ‘National Health Blog Post Month’ for 2012.  I will write another post tomorrow which will sum up the experience of the month-long writing challenge, and a quick recap of the topics that have been covered and so on.

The prompt that I have chosen for today asks us about future plans, and what accomplishments we would like to complete during the coming year.

Plans? That word is one which the chronically ill hates – living with a chronic illness makes it hard to make any kinds of plans.  Never knowing how you will feel day-to-day, or even from one moment to the next makes it almost impossible to make plans.  We don’t like to make concrete plans such as booking tickets to see a show or a music concert just in case we are unable to attend.  And when friends asks us out somewhere; our response is usually “I would love to, but I will have to say how I am on the day.  Is it okay if I get back to you?”  It can be very frustrating, not being able to do all the things we like, when we want to do them.  Often, when we cancel plans with friends a lot of the time; these friends stop asking; in this case, of course they are not real friends anyway.

But that said, in 2013 I would like to be able to accomplish going out regularly like I have been doing with my P.A, and pushing my comfort zones somewhat; to try going to new places.  The most difficult aspect of the condition which I live, is the difficulty which I have with big, spacious buildings which have high ceilings, not only does it mean that I miss out on going to some of my favourite shops that are near to me, but also narrows my world that bit more, especially as many of the new shops that are being built have high ceilings.

But maybe if I push myself that little bit more, I will be able to go in them, even for short periods of time, so I can buy the clothes that I would like (and so I don’t have to worry about postage and package costs).  I know it won’t be easy; the dizziness will be extremely intense, and will probably feel incredibly unwell and weak afterwards, but is that the price I will have to pay to lead a more ‘normal’ life? It will give me more confidence and widen my world more, given me more places that I can explore!…

What would you like to accomplish during 2013?

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NHBPM Day Twenty-Eight: The Ever Changing Goal Posts…

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Welcome to the penultimate post of this November’s month-long challenge, thanks to WEGO Health’s ‘National Health Blog Post Month’.  Today, I have used a prompt from a few days ago instead of one of the prompt’s set out for today’s date.  The prompt asks us how have our goals as a patient/advocate evolved?

In my opinion this is a great question, and I believe that often these goals change when a definitive diagnosis is finally given – especially when we are talking about a diagnosis of a chronic illness.  Before, a diagnosis is given of a particular chronic illness there is often hope – hope of a diagnosis, hope of a miracle treatment and eventual cure, and then going back to enjoying life and achieving all those goals set out before illness reared its ugly head.  Dreams of travelling, going to University for a career of your choice, eventually leaving home and getting a place of your own, and so on.

However, then the diagnosis is finally given – and then you find yourself with this chronic illness – one in which there is no treatment, or even cure.  An illness, which is embedded so deep within the body, that it is never going away.  Then the goals will inevitably change – some may have to be scrapped entirely, others the goals posts may have to shift slightly to be able to achieve the dream.

This is what happened in my life.  I once had lots of goals – some I thankfully, have managed to achieve such as finishing University.  Others, however I have not such as gaining a job and starting on the career ladder.  After University, when all of those pressures that were on me all stopped, the deterioration in my health started to show itself – the dizziness became more severe, lasted longer and so on.  By then, I was hoping to be able to start with some driving lessons, so I would be able to get myself a car, and then find that dream job that I had been wanting.  With the severity of the dizziness, however, this was just  not possible.

And so the goals shifted.  From wanting to achieve a start to a career and using the degree which I worked hard for, this changed to getting through each and every doctor and hospital appointment; with every test and procedure I wanted to get myself closer to that diagnosis, treatment and cure.

Then came the eventual diagnosis eventually came in July 2010 – a long-standing brain stem lesion and spastic paraparesis.  Finding out that there was little they could for me other than trying various medications to keep the symptoms under control.  No real treatment, and definitely no cure.  Inevitably, my goals had to shift dramatically, especially when the symptoms deteriorated further, and when my legs began to give way after standing for shorter periods of time. They went from being to find an eventual treatment and cure to just getting through each and every day; to search for the most suited medications for myself so I can live as near as normal life as possible.

And so there are my goals for today – just to get through each day as best as I can; to live a happy and as normal life as best I can; to make the group that I am secretary of the best it can be.  Sure, I have other goals such as wanting to visit Italy, to meet my favourite author, but these goals might have to be on the back burner at least for now….

As always, would love to hear your thoughts and views, or messages of any kind!  Are you a patient?  Have your goals changed, and if so, how?

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NHBPM Day Twenty-Six: How I Take Time for Myself

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This is another post for the ‘National Health Blog Post Month’!  Today’s prompt, well, one of the bonus prompts asks us to write about how we take time for ourselves.  Well, since starting trips out with the P.A, I am finding that now I am having less time to really take time for myself to rest and recuperate!

I am a daughter.  I am a volunteer.  I am a friend.  I am a writer and social networker.  All these identities which are a part of me, takes time away from taking care solely for me.  I have obligatory chores to carry out around the house, to take some pressure off my parents.  Once a week, I volunteer for a few hours at a local Mental Health Resource Centre; plus all of my responsibilities as secretary of ‘Life 4 Living’.  And there’s my regular writing for the blog, and keeping my social networks up to date also.  And of course, my now weekly outings with the P.A too!

All these take time away from looking after me sometimes, and often after a busy week, I am burnt out – fatigue setting in, and with all the symptoms becoming flared, it means that I may have to spend much of it in bed as it leaves me unable to function.  Well, clearly this is body’s way of telling me to SLOW DOWN.  This is because, no matter the chronic condition that an individual may be facing there are two factors that are often responsible for those dreaded flare-ups: stress and overexertion.  So we need to listen to our bodies when it is telling us that enough is enough; STOP AND REST!

So, from now on I am going to spend some time possibly everyday to spend relaxing and taking some time for me to recuperate; to take some time out from the rat’s race, which is life.  So, how will I do this?  What are my favourite ways to unwind now?

Well, at the moment, when my days are often filled with activities and chores, at night however, I am often extremely tired, and consequently I am left unable to do much anyway.  As a result my nights are often spent vegging out on the sofa watching television.  Something light and does not require a lot of thought to help me relax and unwind from the day’s events.  A lot of the time, this is spent with my parents, or when it’s time for the soaps just Mum!  However, sometimes to take time for just myself, I may prefer to spend the time alone, so I will spend some time by myself in my bedroom, and watch a favourite film of mine (if it’s a bad day and need cheering up then it’s definitely time for ‘The Proposal – one of my favourite films!), or even one of my television boxsets (anyone for some Grey’s Anatomy?).

Another favourite pastime of mine, is reading.  A love more than opening a book, and delving into the story; loosing myself along the way.  Often, to relax and unwind before turning in for the night, I will spend some time reading a book.  Now I have a personal assistant, I have been able to spend some time at the local library; and have enjoyed myself taking time to look at the books on offer, and have just found a love for the writer Tess Gerritsen – even reading two of her books in under a week!  Although, of late, double and blurred vision have plagued me, even lasting for a few days.  My personal assistant has suggested trying some audio books instead, so next time I may do just that instead so at least I do not have to give up my love of books entirely, when my vision is becoming an obstacle for unwinding.

Another activity that I sometimes partake in to unwind and take time for myself is inevitably time spent on the computer – this could be anything from a bit of online shopping (just browsing usually though!), to playing games or spending time on social networks, chatting to friends.

I know a lot of people take a lovely, luxurious long bath to relax and unwind after a long day – unfortunately we no longer have a bath, but instead have a walk-in shower.  I love to spend some time in the morning; setting myself for the day ahead with a relaxing warm shower, with some glorious shower products to take time for myself.

There are always classes that you could take part in.  A class in something which you have an interest in, say astronomy or flower-arranging.  For me, I would love to take a course in web design but the inevitable lack of transport would be a barrier for me.  But for some of you, this could well be an option – and by signing up for a class, you are making a commitment and as they are scheduled, it forces you to take time out for yourself every week.

This weekend actually, I am planning some time for me by going out with a dear friend for a meal out somewhere.  So there’s another option for taking tine for oneself – by going out with a friend, or loved one and doing something which you both enjoy, and something which will take you from being stuck in the house, as well as taking you from your illness for a couple of hours.  This could be anything you want – bowling, watching a film at the cinema, a trip to a museum or art gallery, a trip to the theatre or just a meal out somewhere – as long as it takes you away from the journey of despair that is your chronic illness.  Go and have some fun!

What are your favourite ways of taking time for yourself?  Any other ways someone could spend time relaxing and unwinding from the stresses of life?

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