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I was inspired to write this new blog post after reading a particular article from ‘The Huffington Post

The article was regarding recent research by the biscuit brand go ahead! to find out what really makes people in Britain happy.

Surprisingly, what topped the list was not extravagant things  The list was compiled however by simple pleasures walking in the sunshine which topped the list as well as other feel-good pleasures such as getting into fresh bed sheets, having a cuddle from someone and listening to your favourite song as examples.

Reading the article, made me think of life with chronic illness.  Often when living with a chronic illness, such as lupus, multiple sclerosis and fibromyalgia for example, we are constantly looking for the next big successful outcome or achievement to make us feel-good or give us a sense of peace.  I know when symptoms are very bad, I know that I feel miserable, and only imagine myself only being happy again if I were to be miraculously cured or the severity of the symptoms subsided.  Day-to-day we are often too focused on our symptoms and the negative effect that they are having on us  not only physically but also psychologically and emotionally.

We therefore forget to focus on the small pleasures that make us happy and take us out of ourselves; the forget the negative situation that we find ourselves in and to find happiness in what is around us.

So, I have decided that I would write my own personal list of my own feel-good pleasures that makes me happy:

  1. Reading my favourite book
  2. Receiving a handwritten letter
  3. Looking at colourful butterflies

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  4. Receiving flowers
  5. Getting into fresh bed sheets
  6. Watching my favourite film
  7. Receiving a lovely comment on a blog post I have written
  8. Finding a lovely present for someone
  9. Receiving a hug from someone
  10. Seeing a rainbow
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  11. Being wrapped in a warm blanket especially on cold dark evenings
  12. Receiving an unexpected phone call from a friend
  13. Being pampered, e.g. a massage or a trip to the hairdresser’s
  14. Applying colourful nail polish on my nails
  15. The smell of popcorn
  16. The taste of chocolate
  17. Being kissed by my dog Honey
  18. Spending Sundays with Mum
  19. The feel of soft and clean towels
  20. Going out and enjoying the sunshine
  21. My gorgeous cushions which brighten my bed and helps keep me comfortable when I rest in bed
  22. Waking up after a restless sleep
  23. Browsing in a book shop
  24. Making decopauge cards
  25. Completing a level of a game that I had been stuck on for ages
  26. Publishing a blog post that I had been working hard on
  27. People smiling and saying hello to me on the street
  28. Enjoying my favourite drink and relaxing in my favourite coffee shop
  29. Laughing
  30. The sound of the rain

Those are some of the things that would be on my persona top favourite feel-good moment list.  What would be on yours?  Comment below and let me know!!

To see the full list of what British people voted as their top favourite feel-good pleasures, visit the Huffington Post article here.

 

 

 

 

As most of my regular already know, I love to write and although this very blog gives me an excellent opportunity to do so, I often wish that I could have an opportunity to write for a wider audience.

So, I am very pleased that this week, I have been published in two excellent publications.

Firstly, several weeks ago, I received an email from a journalist from PharmaTimes magazine, which is a very well-respected healthcare and pharmaceutical publication.  The magazine offers independent, authoritative and trustworthy content on key issues and topics that are of relevance for those working in the healthcare and pharmaceutical industry.  As part of the development of the magazine, they have began to interview one patient per month regarding their own views and issues that affect them as they navigate the healthcare system from the ‘other side.’  The email therefore was to ask me if I would be interested in taking part in an interview giving my own personal views on the healthcare and pharmaceutical industry.

I agreed as not only was it a great opportunity to discuss my views on a subject that affects much of my life as one piece of my identity – a patient.  It however was also an opportunity to help professionals gain an insight into the patient perspective and represent the patient population by doing so, especially as a patient living with a rare neurological condition.

The Patient File

In addition, I have again been published in yet another edition of the wonderful ‘The Pillow Fort’ Magazine.  For new readers, The Pillow Fort Magazine is an e-magazine for and written by young(ish) people affected by chronic illness.  Each issue has a different theme, and this particular issue was based around “Self-Care”.  This edition features many informative, interesting and relevant articles based around the concept of self-care from an ‘A to Z of Self-Care’, through to exercise for well-being and even delicious recipes for ‘self-care’ cocktails.

As a result I wrote an article based around self-care and holidays and how we can still take care ourselves even when away from our regular routines and everything that provides us with comfort.  This article was inspired by my recent cruise and how I participated in self-care when I felt at my worst and stuck on a moving ship.

 

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To check out this wonderfully positive and inspiring magazine and/or purchase this particular issue (or previous editions) then please do so by clicking my affiliated link below:

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tumblr_lr8hwvvEai1qmupweo1_500 Throughout my teenage years, I was a massive fan of the television show ‘Friends’.  Not only was the show incredibly funny but I also loved the relationships between the six main characters – their strong bond of friendship and how they were constantly there for each other.  However, although the show was entirely fictitious, I also found myself feeling envious of the close friendship as; unfortunately, I had none of my own after my so-called friends abandoned when symptoms, especially the dizziness started interfering with my everyday life.  There is nothing like a diagnosis of a neurological condition, or any other chronic illness to show who your real friends are. After leaving university and entering adulthood, the problems regarding friendships have not improved.  Many friends that I have made, unfortunately no longer in contact with me; despite my attempts to do so.  This is something that has hurt me deeply over the years, especially as I thought of them as close friends.  I am not sure the reasons behind the now lack of contact – the reason may lie in their own prejudices towards my conditions, or perhaps they failed to understand the reasons behind my inability to go out to places that I find uncomfortable and can precipitate an attack of vertigo.  Whatever the reason, however, it hurts deeply and has often led to a decrease in self-esteem and self-confidence as a result. In my last blog post, I write how many of my symptoms have recently worsened and furthermore how I have struggled both physically and emotionally because of the sudden deterioration.  What has also made it harder is the loneliness and isolation that I have felt when in the house during this period.  It is during these times that I wished that I had friends living close by that could pop by for lunch or to take me out to distract me from my severe symptoms and make me feel that I am less alone in my struggles with living with this condition.

Although I may have a distinct lack of friends living nearby, I have however made a lot of friends online that although the distance between us is significant, they should not be excluded from this discussion into friendships and chronic illness.  These friendships that I have developed online through the blog and social media have come to mean so much, as they too also experience chronic illness or other long-term chronic conditions and therefore understand exactly what it is like to live with them and thus gives support like no other.

Furthermore, by using tags and hashtags on social media such as the term ‘spoonie’ (a person who is living with a chronic illness or chronic pain) is not only fantastic at connecting with others going through similar experiences but also makes us feel that we are part of a community.  A fact that is important as due to our conditions we often feel excluded in other areas of life.

Tweet: The term ‘spoonie’…makes us feel that we are part of a community… http://ctt.ec/XB4rF+ via @serenebutterfly

And it is thanks to these online friendships that I now feel that I have people outside my family that actually care about me.  It has also led to the feeling that I am worthy of such friendships (as I have been burned by many people in the past, I often felt that there was something wrong with me, or was not worthy of friendships).

It is surprising that these online relationships can develop into such strong and meaningful friendships.  For many of us living with long-term health conditions, or conditions which prevent us, or makes it difficult for us from getting out into the community we know that it is these friendships that are so important to us and makes life living with illness a little easier.

In my experiences, I have often found that the friends whom I have met online actually keep in contact with me, or even cares more about me than the people who are in my real-life existence. images A favourite saying of mine is “Friends are like stars.  You don’t always see them, but you always know that they’re there…” and it is certainly true regarding my fellow chronically ill friends.  Just because I don’t see them, it does not make the friendship any the less relevant or real – what is important, however, is that they continually are there for me during my struggles and even through the good; and also that they show concern and support when I need it.

Tweet: Friends are like stars. You don’t always see them, but you know they are always there http://ctt.ec/HUlcN+ via @serenebutterfly

So, what if it comes through a computer screen instead of face-to-face interaction, isn’t the fact that we have made a connection with another person the most important point? But perhaps there are ways which I can develop these friendships further – maybe by swapping phone numbers with friends I have made online. Or start using Skype as a means of keeping in contact with people may be a start in gaining support when I am in need, and to also give support for when I am required to support someone else in need?

So, I am interested – what are your experiences of friendships and life with chronic illness?  Have you still managed to maintain friendships with those in your real-life existence? Or do you rely on friendships that have developed through online communication?  Love to hear your thoughts and comments on this subject so please don’t hesitate by getting in touch by commenting below or even getting in contact via social media (links can be found by clicking the icons at the top of the page).

These past couple of days, I have been experiencing the severe trembling sensations in my legs.  Well, I have these sensations all of the time, of course, however the trembling has been somewhat more severe recently.  It is not just these sensations which I have found to be particularly troublesome of late; the fatigue, and the pain associated with the spastic paraparesis have also been bothersome.  At times, living with all these symptoms as well as the constant dizziness has been increasingly difficult and miserable.  Everyone reading this who also experiences chronic illness, will know that when experiencing a relapse, or a bad flare regarding our symptoms, you need to balance the amount of physical activity whether it be exercising, going out or doing chores around the house, with resting your body and taking a break from activity that may exacerbate symptoms.

And I have been doing this; I have listened to my body and took a break from attending the gym, as the trembling in the legs on the day I usually visit was particularly bad.  I even had to cut short my day out with my carer as I felt too unwell and tired to go anywhere else, on that particular day.  However, I have also found that whilst I was balancing the amount of physical activity I was doing and resting; the symptoms were still not improving.  So, when Thursday arrived, and as I hadn’t been out for a few days, and felt miserable as a result, I decided to thrown the rule book out of the window and enjoy the day without worrying about symptoms or maintaining that balance of physical activity with resting.  Of course, on the day I needed to take my wheelchair because of the severity of the trembling in the legs, but was determined that despite all this I was going to enjoy the glorious weather and spend the day away from my bed and the same four walls that I had been cooped up in for several days.

I am so glad that I went out despite not feeling my best and whilst battling severe symptoms.

I had a really enjoyable day out; the weather was gloriously warm and it felt so lovely to be out of the house and feeling the warm sunshine on my skin.  The symptoms, and especially the trembling in my legs were still so bothersome that I was unable to go to the gym, so we decided that instead we would spend the day visiting a little town near to where I live called Cowbridge. I had previously only been there once, and not for very long so thought it would make a change to visit somewhere relatively new and going into little shops and boutiques that I had never experienced before.  I even managed to treat myself to a gorgeous ring that I had seen online by one of my favourite jewellery designers Annie Haak, but had been unsure of purchasing as I was worried that it would not fit my very small fingers!  However, whilst browsing the shop windows in Cowbridge, we came across a little jewellery store that stocked these very same rings!  And after trying on the ring and found that it did fit my fingers, I bought it.  I am so pleased with my purchase and is a lovely reminder of our day out and triumphing over my symptoms.

The gorgeous Annie Haak adjustable ring that I bought for myself
The gorgeous Annie Haak adjustable ring that I bought for myself

“When we are experiencing more bad days then good, we need to make the most of those good days” (Click to Tweet)

The day was not just spent shopping; part of the day was spent relaxing in this pretty and scenic gardens that my carer came across on a previous visit to Cowbridge.  It was so nice just to sit and relax amongst the beautiful and colourful flowers.  It also created the perfect time to take some photographs to commemorate this splendid day out that I enjoyed so much.  In my experience of living with chronic illness, is that when we are experiencing more bad days than good, we therefore need to really make the most of those good days.  Living with a chronic illness, it is so wonderful to make lovely memories that we can look back on during the bad days and reflect upon.

The past couple of days after this day out has been very bad; the trembling in the legs were once again very severe, more so than before, and left unable to fully function.  Do I regret the day out now?  No, absolutely not.  As I said before, living a life with illness, where you experience more bad days than good, we therefore have to take full advantage of the days which are good.  Although it was not a particularly good day health-wise on this day, I felt that I could physically do more than previous days and so took full advantage.  I may be suffering after, however but I still have those lovely, positive memories to look back on and a gorgeous ring to admire.

So, although rest is vital and important when living a life with chronic illness, sometimes however it is just as important to sometimes throw the rule book out of the window and go and make memories to cherish and look back on when illness prevents us from doing anything else.  Let’s go out and live our lives, and take full advantage of the rare good days and make glorious memories in the process…

Not long after returning from the cruise; in fact it was four days after returning I had to attend an appointment at my local hospital for an MRI scan.  Although, as many of you will know from reading my last post, the holiday was difficult for me, however a positive of the trip was a break from the monotonous lifestyle of a spoonie, such as the endless days stuck inside the house and the endless numbers of hospital appointments and doctor’s appointments.

But now that I am back home, I am also back to living the life of a spoonie.

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The neurological patient’s most dreaded test…

 

And the first step on the ladder back to the life of a ‘sick chick’ was the MRI exam.  A test that has been nine months in the waiting! Yes, a nine month wait for such a procedure is what you can expect from the NHS in Wales!  And even more surprisingly was the fact that the scan was scheduled for 7.45 at night!

The MRI experience is strange and alien no matter how many times you’ve experienced one… (Click to Tweet)

An MRI scan that many of those of you living with neurological conditions are subjected to regularly.  And it’s an experience that is strange and alien no matter the number of times you have had one done.

The machine itself is big, extremely loud, and rather claustrophobic.  So, it’s no surprise that it can invoke a lot of anxiety in many people.

I have to admit when I experienced my first MRI, I was petrified and anxious, however with like many experiences in life the anticipation turned out to be much worse than the experience itself.  In fact, I rather enjoyed it; feeling cocooned whilst in this strange cylindrical scanner and practicing visualisation techniques as a distraction technique from the noise and my anxiety.  For me, I would much prefer the MRI scan and being enclosed than the CT scan which is more open – I may be in the minority there, but it’s true at least for me.

As, the appointment last Tuesday was not my first MRI scan I was therefore slightly more relaxed beforehand but there were still some butterflies in my stomach as although the procedure is not invasive it can still be very unpleasant due to the noise and confinement in the machine for a considerable length of time (this scan of my brain and entire spinal cord took approximately 1 hour).

As there was no receptionist on the desk on arrival we had to phone through to the MRI suite to inform them of our arrival, and then after a nearly 30 minute wait, I was ready for the scan…

The technician helped to lie down on the table and placed my head in a brace to limit movement whilst the scan took place, and gave me an alarm to hold onto that I could squeeze in case of an emergency.  And of course was given some earplugs to place in my ears to limit my exposure to the loud noises that the machine can produce when scanning the parts of the body under investigation.  When under stress or during periods of boredom (yes, having an MRI can be very boring indeed!) I love to listen to music and I know many people  have reported that they had the option to listen to music during their scan, but unfortunately I have never been offered this option.

After settled in the machine, the technician left the MRI suite and situated herself on the other side of the glass window where she was controlling and monitoring the MRI.  And then it started…

I knew beforehand that this scan would take longer than the last which I found daunting as during my previous MRI I found it extremely difficult to stay still for the entirety of the scan.  I found it true of this scan too, and in fact I was so aware of my body and trying not to move that I was in some considerable pain afterwards. After the scan I also had a headache due to the noise that was produced during the scan – the noise a combination of extremely loud knocking and banging as well as the occasional ringing sounds.

Now, it is just the waiting game until I once again have to visit the neurologist and find out the results of the scan and the other tests that I have been subjected to during the past few months…

Would love to hear all of your MRI experiences?  Good or bad?  What techniques do use to get yourself through the experience?  What techniques can we use to make the experience more ‘fun’ whilst the scan is in progress?

Please get in touch by commenting in the comment box below…

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