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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…

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

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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