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Chronic Illness

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This is a very hard post to write.  Not only because of its contents but also because of the way recent events has left me feeling, which is very down if I am to be honest with you all.

This is because last Tuesday, I had yet another hospital appointment with the neurological consultant that I am under.  The purpose of this visit was a follow-up on how I have progressed since the last visit but also to find out the results of the tests that I have had conducted as well as the findings from the other consultants that I have seen, since the last time that I saw him.  All of the test results came back clear, however and as a result we are no more closer to finding a diagnosis than we were before.

Of course, it is a relief to know that there isn’t anything seriously wrong, but at the same time I was devastated at the lack of positive test results and as a result no diagnosis.  During another neurological examination, when asked to slide my ankle down the opposite leg, the bent leg started going into spasm.  At this finding, the neurologist’s face became puzzled, but at this he could tell something is wrong but is at a loss what it could be.  Interestingly, he noticed findings that were not present during the last examination.

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So what now?  Well, now he has decided to test for some genetic causes to explain my symptoms, including:

  • Dopa-responsive dystonia
  • Dystonia
  • Spinocerebellar ataxia

I think I am partly becoming down because of the unknown of this situation.  The unknown of what exactly is wrong with me as well as the unknown of what I am facing.  In my opinion, not knowing is often the worse than the reality.  If I had a definitive diagnosis, then at least I would have an idea of what may happen and to make plans accordingly.  However, not knowing is similar to being stuck in limbo; stuck in the middle of nowhere and at a lost as to the direction my life is headed.

“Not having a definitive diagnosis is like being stuck in limbo…” (Click to Tweet)

I am also worried that if the doctor’s are a loss as to the cause of my symptoms than they are eventually going to be labelled as being psychological.  It is true that in the past I have had problems with both depression and anxiety but I am positive that these were as a result of my undetermined condition.  For example, I know that the anxiety started after the dizziness – who would not become anxious after experiencing something so unpleasant and not knowing what was happening?  Then there were the thoughts that I should have asked more question, for example should I have asked for a MRI with contrast – could that have shown something a regular MRI would not?  Although I am worried about this, the neurologist that I am under seems to be determined to find the cause of my symptoms and is even willing to refer me to someone else in the department or even a possibility of being referred to a specialist neurological hospital in London.

But in the meantime, it looks like I may be stuck in limbo for the forseeable future…

 

So I am interested in hearing your stories of diagnosis…How long did you wait  for a diagnosis? If you are still waiting for a diagnosis, how do you feel about it?

Am also interested in the views of those living with the disorders that are mentioned above…How long did you wait to be diagnosed?  How were you finally diagnosed?

Feel free to comment below…

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).

I realise that I have been deathly quiet in regards to my writing recently but unfortunately I have been really struggling with well, everything.

I have been finding that the trembling in the legs is becoming increasingly worse.  Standing is becoming extremely uncomfortable and impossible to do for very long as I am feeling the severity of the tremors and the buckling of them whilst queueing or whilst completing the washing-up for example.  With regards to standing, it has been evoking anxiety as I am always afraid that they will suddenly give way, which has been happening to much embarrassment.  It was not until I was speaking to a person who has similar problems to myself, that using two crutches maybe more beneficial for myself than using just the one as it offers increased stability when standing and walking and reducing the risk of falls.  I loved the idea of being able to save myself from falls as because I have been experiencing so many of them my bruises have bruises!

The owner of the gym even kindly let me borrow a couple of the crutches that have been donated to the Feelgood Factory.  Unfortunately, after using them for a few days around the house and even once whilst out with my carer, I have decided that this option is not for me as not only have I found using two incredibly awkward and uncomfortable, they have also proved to be inconvenient.  For example, whilst in the house on my own, I was unable to carry my lunch from the kitchen to the living room as I had no free hands to spare!  It has also been found to be inconvenient when out shopping as I am left unable to pick items from the shelves or racks and therefore offers me less independent than using the one crutch as I am reliant on other people to do my shopping for me.  In addition, because of the dizziness I have always found that holding onto someone for support, such as linking arms gives me comfort and confidence when out and about and so using two crutches also prevents me from having the support of another person.

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So, I now have to make a decision to make whether to start using the wheelchair on a more permanent basis; although I do not always feel comfortable in using one because of the dizziness and vertigo, it has been put to me that because of the increasing severity of the trembling as I have stated above and the increased number of incidents of falls then it may be the time that I need to start thinking of using it for the majority of the time when I am outside of the house.  This is not only to keep me safe from further injuries, but also prevents my falls from injuring others or even from falling and damaging items that are on display in the stores that I visit.  It is not an easy to decision to make; for anyone it is difficult to admit weakness and further to admit that you need help.  It’s difficult to accept that my legs are getting worse and further that I may need further support such as the wheelchair to be able to get around when out of the house.

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Fatigue has also been a big problem for me also.  As the pain and trembling have been bad during the nights, sleep as a result has been limited and thus leaving me exhausted through the day.  Naps has been my best friend lately and have found myself falling asleep during the afternoons.  These naps are more frequent and last longer after days where I am out and about I have also noticed.  Fatigue not only leaves you feeling absolutely exhausted but also leaves you with little energy (or in our case ‘spoons’) to be able to do things that we would ordinarily do with ease.  Completing one circuit of the gym has been extremely challenging, whereas before I could complete two with ease.  Chores has left me unable to function for hours.  Not only it has had an effect on my energy levels either.  It has also had an effect on my mood – not only have I been snapping with very little provocation but I have also been feeling very low.  I would not say it’s depression but am just generally low in mood.

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In other news, I finally have had an appointment with the neurology consultant for early next month so I am hoping that all of the test results that I have had done over the past few months have found something, or there are ways in which they can help me and improve my overall quality of life.  When things are bad such as what I am experiencing at the moment, it can often seem as if we are just existing rather than living; if we are just going through the motions or living on autopilot but I am determined to continue to fight my way through the bad patch and find my silver lining…

Tweet: When things are bad it can often seem as if we are just existing rather than living http://ctt.ec/b30e0+ via @serenebutterfly #spoonie

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