Recent 5 Challenges and Small Victories

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going

Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition.  I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.

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Challenges 

  1. The first challenge that has been rather large in my life recently is definitely fatigue.  The fatigue recently has been constant and unrelenting.  Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel.  After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep.  It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
  2. My legs have also been challenging for me as late.  If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them.  The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body.  I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
  3. The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair.  Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer.  Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out.  More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
  4. I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to.  It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation!  It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence.  It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
  5. Feeling reliant on other people most of the time.  It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you.  I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own.  It’s very frustrating!

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Victories

  1. I have mentioned this in a recent post entitled -’I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there!  This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used.  My carer and I have been trying for a long time for me to even set foot in there.  It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time.  I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
  2. This actually links in with a challenge listed above regarding the use of a wheelchair.  Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair.  The dizziness was severe, and so I was nervous about using it.  But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around.  I felt in control whilst using the wheelchair for the first time in a while.  This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
  3. I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently.  It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
  4. One thing that really keeps me going are the networks that I have created thanks to social media.  The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling.  I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
  5. My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness.  A lot of people have contacted me regarding my board, and have even created one for themselves!  I love that I have inspired others and help make someone stay positive through their own illness or troubles.

So, those are my recent challenges and small victories!  To read about what I had written previously then please go to ‘HAWMC Day 27: 5 Challenges and 5 Small Victories…

What about your own challenges and victories – have they changed over time as your condition has changed?  Would love to hear your thoughts and suggestions.  Please feel free to post your comments below…

 

 

 

Wordless Wednesday: Result of trembling legs and falls…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The prompt reads as given:

Wordless Wednesday…We all know a picture is worth a 1,000 words.  Post/share a picture that relays a message or story to the viewer.

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Falling Down A Vortex…

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Remember, Alice in Wonderland when she fell down the rabbit hole and found herself in a different world?  Well, recently that has felt like my life.  Except, that instead of finding myself in a world filled with the Cheshire Cat, the White Rabbit and the Mad Hatter; I have instead found myself stuck in world of pain, dizziness, depression, falls and loss of feeling in legs.

No, recently it has not been a happy time, and one of the reasons why I haven’t updated the blog for a while.  Writing in the midst of pain and depression has proved too difficult.  I think, i have also not wanted to wrote about the tough times, as I often worry about sounding too negative and self-absorbed.  However, a good friend recently reminded me that a blog about living with chronic illness should document the bad days as well as the more positive posts.  To keep a blog is to be truthful and to be reflective of life; and life for everyone has its ups and downs, especially when you factor a chronic illness into the equation of life.

The depression crept up on me out of the blue.  I suppose, it wasn’t a surprise that the depression has reappeared; it is only natural, when living with severe and debilitating symptoms for so long,  And the symptoms that have been severe lately has not just been the older symptoms such as the dizziness and weakness in the legs, but the newer symptoms have also been problematic.  Before now, I had only experienced short periods where I have lost all sensation in my legs.  Recently, however the periods with no sensation in my legs, have become much longer; lasting all day even.  For me, it feels so strange and unnerving to feel no sensation, and means that walking is much more difficult as you really need to concentrate and look to where my legs are – and walking become a lot slower than normal!

It was due to the loss of sensation which led to a very bad fall down the stairs, the other evening.  Typical, that I has alone for the night when it happened, having no one around to help me.  Luckily, the fall didn’t result in any broken bones or other significant injuries – just a lot of bruises and a cut on my leg.  The only casualty from the fall, was my Kindle, which now is broken and in need of replacing.  This really upset me, probably more than it would have, if not for the depression.  As many of you know, I have a love of reading, and my Kindle was a lifeline for me on the days where I am unable to get out of bed as it allowed me access to books when I am unable to go to my book shelves.

The casualty from my tumble down the stairs...

The casualty from my fall down the stairs…

However, as the loss of feeling in my legs ended; the feeling coming back, it only resulted in pain, and after the fall, pain like I have never experienced before.

The constant battles with the dizziness and depression; and the battle between pain and loss of sensation in my legs have really thrown me down the vortex and transforming the world that I thought I knew.  But, life with chronic illness can be like that; symptoms disappear and replaced with new ones.  It’s a world that keeps changing.  But hopefully, perhaps one day I can fall down a vortex that leads to my very own Wonderland…

Hospitals, results and losing hope…

Hello to all my readers

Sorry that I have been quiet recently and a distinct lack of posts from me.  Recently, I have been struggling with fatigue, and as well as this have had several hospital appointments which follow the appointment with a consultant specialising in audiovestibular medicine.  For those who do not follow my blog, or who do not know what audiovestibular medicine is, it is a branch of medicine which specialises in the diagnoses, medical treatment and rehabilitation with disorders of hearing and balance.  Doctors who specialise in this area, concentrate on patients with a variety of different problems including dizziness, hearing loss, tinnitus, speech disorders and abnormalities in eye movements.

My first appointment with the registrar back in November, revealed a problem mentioned above.  He noticed that whilst following his pen with my eye, there was a slight delay with my movements which indicated a neurological problem.  The doctor referred me to have some balance tests conducted to determine whether the dizziness is due to a vestibular dysfunction (inner ear disease) or not.  Here is a video which outlines the VNG test:

The test, which happened a fortnight ago was not pleasant and afterwards the dizziness was worse.  Last week, I returned to the hospital for the results…

During the consultation last week, I was asked to perform a test was I was not able to perform the previous week during the VNG test.  This test is known as the Diz-Hallpike test and involves the patient lying on a table with the head hanging over the end of the table. The doctor will then turn your head 30° to 45°.  The doctor during the test will watch your eyes for involuntary eye movements known as nystagmus.   The timing and appearance of the vertigo and nystagmus determines whether the vertigo is caused by an inner ear disorder or the brain.

After completing this particular test, my parents and I were taken back to the consultant’s room and were unfortunately informed that an inner ear disorder have been completely ruled out, and that there were some abnormalities during some of the tests which indicated a  problem with the central nervous system, i.e. the brain.  We were also informed that there is little that can be done, and although they are sending me to a rehabilitation therapist to learn some exercises to try and ease the severity of the dizziness, the consultant was not confident that they would help.

This was obviously not the outcome that we were hoping for.  It is not the first time that I have been told my a medical profession that the dizziness is very likely caused by a neurological condition; and it is not the first time that it is not anything that they can do to treat the dizziness – however, every time that I hear these words, it is like hearing them for the first time, even after accepting them after a previous appointment.  In addition, after repeatedly hearing that the dizziness is a life-long symptom that I will have to deal with, a little part of me still gets extremely upset and despondent.  I have always realised that the dizziness is very likely a neurological problem, and very unlikely to go away but after having it confirmed after various hospital appointments is still feels as if the small glimmer of hope that is inside of me becomes extinguished after hearing those words again and again.

Living with the dizziness, is like living with a permanent shadow following and lurking behind me wherever I go.  Always present and ready to strike at anytime. The dizziness at present is constant, as well as being severe and at times debilitating and coming to the realisation that it is life-long is a hard concept to get my head around and even harder to accept.  There are a number of people that has told me to hold onto hope that there is someone out there who could help me and that there is something that can be done – however the question is; is it wise for someone with a chronic illness after being told that it is a life-long condition to hold onto hope that a cure is out there?  Is holding onto such hope, only going to lead to more heartache and upset? Is it best however, to accept the reality as it is, and move forward with your life as the best you can despite the limitations that the chronic illness places upon the life of the sufferer?  As Joseph Campbell said “We must be willing to let go of the life we have planned, so as to have the life that is waiting for us”.  So, does keeping hold onto hope of some kind of cure, stops us from living the life that we may have not planned, but our new reality?

Do I go in hunt for a cure for the dizziness, which may not even be out there? Or do I simply learn to live and accept the dizziness as a constant part of my life.  It is very hard to accept that this dizziness may never go, and honestly it has really knocked my confidence on going out, but more importantly on going on our cruise in May.  If the dizziness is this severe then, how will I ever be able to enjoy myself?  Will I be able to cope with the dizziness whilst on holiday?  These are the questions that are currently running through my mind.

Simply losing hope but attempting acceptance…

Taking the high road…

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Welcome to the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Taking the High Road: Write about a time you had to be the bigger person and take the high road.

A while ago, I was having a conversation with somebody online, and they enquired about my life with my health condition.  As I explained the symptoms that I experience, the person responded “Surely, dizziness isn’t that bad to live with.  I’ve experienced it a few times, and it wasn’t that bad…”  At first, I was astounded, and really wasn’t sure how to respond.  Then, I got really angry, and wanted to shout (or in this case type!) “It’s not that bad!  You try living with this constantly and then try telling me it isn’t that bad!”

As much as I wanted to, however, I didn’t and took the high road, and instead responded “Well, I am glad your experience with dizziness wasn’t bad”.  That was the end of the conversation, and instead opted for safer conversations such as books that we both like, and films and so on.  Looking back on the conversation, and after having conversations with other people suffering with chronic illnesses, I realised, that although the person’s comments were not said to be malicious or hurtful, although I found them to be just that; it is very difficult however extremely difficult to imagine  the severity of any symptom that a person suffers with, unless you have experienced it yourself.

Never a judge a person or indeed their illness if you haven't experienced it yourself...

Never a judge a person or indeed their illness if you haven’t experienced it yourself…

Perhaps, when people, whose words we perceive to be hurtful, in relation to our illness, we need to take a step back and instead of shouting and hitting back at their words, we can take instead it take as an opportunity for educating others’ about our particular health conditions, and becoming an advocate for everyone who lives with the condition.  It provides an excellent opportunity to really discuss with others’ what it is like to live with the illness, and to dispel popular myths that exist in the media and wider community.

Talking Mental Health…

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Welcome to the twentieth-first day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s post reads:

Mental Health Meld: Mental health issues can affect many other conditions.  Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall well-being?

Let's talk Mental Health...

Let’s talk Mental Health…

Regarding yesterday’s post about the start of the dizziness in my life, entitled “I still remember..“; it also triggered an anxiety disorder.  Due to the intense dizzy spells that I experienced as a young child and becoming worse as a teenager, it resulted in me worrying about everything; worried about the when the next time the dizziness will occur.  And then when it occurred in places such as a supermarket, or in a particular shop, I would worry that it would happen again and so would avoid that places, in the hopes that I would avoid an attack of the dizziness.  However, this obviously did not stop the dizziness from the occurring; but only resulted in my world from becoming smaller and smaller as I avoided more and more places.  In addition, as a result the dizziness that I kept mentioning to the doctor was put down to the anxiety disorder that I was diagnosed with.  This is the problem with being diagnosed with a mental illness; it is widely acknowledged that mental health patients face difficulty in getting diagnosed and treated for physical illnesses as doctors will often blame their psychiatric diagnosis or the medications that they are taking on the symptoms that patients are experiencing.

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition...

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition…

In the end, I got help and treatment from the anxiety disorder, and thanks to therapy and graded exercises my world once again started to become larger as I started to visit the places, I once avoided.  The relaxation techniques that I were taught, helped with the anxiety I was experiencing; although the dizziness was still very much there and still as intense.  Now, I still find that anxiety is still an issue; an issue that can affect my mental and physical health,for example when  the dizziness becomes so intense when out, my first instinct is still to panic and become anxious, although the anxiety I find is something that I am able to control, unlike the symptoms relating to my neurological condition, such as the dizziness, and the weakness and trembling in my legs, etc.

It is not only the anxiety, however that can be a problem for my mental and physical health however; depression is also another mental health issue that I have experience of, and can which still be a problem, years even after it first started.  The depression, can still rear its ugly head, when I am experiencing bad flares in my condition.  I often experience the depression, when my symptoms have been really severe for a long period of time; for example recently the dizziness has been so bad for several weeks now, and that has been making me feel down a lot of the time because of it; and because of the depression, the fatigue that I already experience becomes even worse, and that has a knock-on effect on the rest of my symptoms.

Depression can appear during flares in my condition...

Depression can appear during flares in my condition…

That is the thing with mental health conditions when already living with a physical health condition – it is a vicious circle and one of the health conditions become worse, it automatically affects the other.  So, to survive living with a physical health condition, we also need to look after our mental health…

Do you find that the best way to live well with your chronic illness is to also look after your mental health?  I would love to hear your thoughts and comments regarding this issue.  Please comment below…

“I Still Remember…”

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Welcome to the twentieth day of the National health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

I Still Remember…Free write a post that starts with this line and describe an unforgettable moment in your health journey (for example; a cancer free diagnosis, etc)

I still remember the first dizzy spell that I experienced when I was eight years old.  Although my Mum suspects I may have experienced dizzy spells when I was really young, however the one that I experienced when I was eight, is the one that I really remember experiencing, and started my long journey living with dizziness.

It was December, and my parents and I were browsing a local DIY store in search of new wallpaper for the living room.  I remember the bright, twinkling lights from the Christmas decorations that were in-store, excited for the upcoming holidays.  We were browsing the aisles when out of nowhere, the dizziness came on out of the blue.  It felt as if I were moving in a room that was still and silent, even though I was actually standing still.  I remember being so afraid of falling, that I suddenly grabbed my Mum’s hand and squeezed so tightly as if it were the only thing that was going to stop me from floating away from my parents.  The increased  sensations of the weakness and trembling in my legs; worried that they were going to collapse.   I was so frightened; unaware of what was happening to me and unable to adequately describe the sensations or the experience of what was happening to me. I felt sick and very warm, and just felt an urge to escape the store and go back to the comfort and security of home.

I can still remember going back to the car, sitting down, but still feeling incredibly dizzy, which continued for some time after leaving the large store.  I thought how scary the whole experience was and that i wished so desperately for it to never happen again.  But as we all know, sadly it was not to be the last dizzy spell that I would experience; instead it would be the first of so many.  Dizzy spells that would not only increase in the frequency, but also increase in the severity, until I would live with it constantly as I am now.  Yes, I still remember….

Think you know my health condition? Then can you spot the incorrect statement…

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Welcome to the eighteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life.  Now tell us a lie.  Do you think we will be able to tell the difference?

 

So, you think you know my health condition?  Let’s see!  Can you spot the incorrect statement from the four statements below?

  1. The dizziness that I experience is constant
  2. The spastic paraparesis only affects my legs
  3. Both hot and cold weather affects my legs
  4. The vertigo is triggered by visual disturbances

Do you know which is the incorrect statement?  Choose which one you think the wrong statement is in the poll below and I will reveal the answer tomorrow!

 

 

Chronic Illness and its awkward situations can be embarrassing but they can also make us grow…

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Welcome to the sixteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Well, that was embarrassing…  What’s the most awkward situation your health condition ever put you in?  (Don’t be bashful, we’re all friends here).  Maybe you can look back on it now and laugh, but it wasn’t so funny then

I suppose, one of the benefits of living with an invisible health condition is that when you are out of the home and walking amongst the healthy, others are not aware that you have a chronic illness and you are able to bask in the pretence that you are just like everyone else.  I used to be able to do just that; walk around as if I was perfectly healthy, ignoring the dizziness, pain and weakness that was reminding me that I wasn’t like everyone else.

However, after the condition started to worsen, the awkward phase of my neurological condition began to present itself – frequent fall in public.  Yes, it happened in shops, at home, at houses of friends and family as well as the centre where I used to volunteer – my legs would suddenly give way which resulted in my entire body collapsing to the floor.  I found this extremely embarrassing , especially at the times when I was unable to get up straight after the fall because of the weakness in the legs.  Looking back I do not think it was just the situation that I found awkward and embarrassing, which I did especially given my age and partly because at that time I didn’t know what was wrong with my body.  No, it was also the attention that it caused from others who were around, the stares and the fuss that these falls caused; it was especially embarrassing when it happened in shops and being helped by elderly people who were much older and obviously fitter than myself!

Of course, this happened, not just the one time but happened extremely frequently for several years.  Then, once it happened right in the middle of a popular clothes store in town when I was out with my carer, and because of the weakness in not just my legs but throughout my entire body, I was unable to get back up for approximately ten minutes and so had to be helped by several members of staff and my carer to a stool that they had lent me.  The shop at the time was quite busy and there were several members of staff, so as it happened in front of so many people was very embarrassing especially given the stares and people asking me if I was alright and if there was anything they could do (don’t get me wrong I find that to be very kind and thoughtful but still it doesn’t make any less embarrassing!).

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Looking back at this particular incident however, I now realise that it was an important part in accepting the deterioration in my mobility and overall condition and finally accepted the need for the wheelchair.  Perhaps, it is an incident that was awkward but one which was enlightening and shone the light on an aspect of my life that was changing but could do something to help me adapt to the new situation.  It also shows that awkward and embarrassing situations, although can be upsetting and distressing, they can prove to be situations that cause us to learn and grow…

Has your health condition caused you to have an embarrassing incident?  Would love to hear your comments and thoughts as ever!  Please leave any comments below!…

The Evolution of a Patient

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Welcome to the thirteenth day of the National Health Blog Post Month Challenge.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Evolution: Write about how being a patient or caregiver has changed you.  How have your goals changed?  Have your values changed?

Patience; as a patient I have developed far more patience than I had before being a chronically ill patient.  In my opinion, patience is definitely a quality you need when becoming patient, especially when waiting often weeks or even months for hospital appointments, and for test results, and everything else that being a patient entails.  Although it is extremely frustrating having to wait so long for appointments and test results, I also think that having contact with other patients whether it is in real-life or via social media, can make this easier to bare as it makes you realise that you are not alone and able to support one another on the journey through being a chronically ill patient.

In addition, being a patient has also changed me in regards to knowing when to listen to my body.  Often, my chronic illness leaves my body very fatigued, and when this occurs  I know that I need a nap.  The consequences of not listening to my body can result in overwhelming weakness throughout my entire body as well as severe dizziness and vertigo, which can then result in being bed bound for a length of time.

Before being a chronically ill patient, I perhaps held too much faith in doctors; often seeing them through rose-tinted glasses and thinking that they are able to fix all the ailments that are presented to them.  However, after being a chronically ill patient myself, I have sadly had first hand experience in learning that often doctors are not able to cure every ailment and illness; I had to learn to accept that endless consultants were unable to cure or even help me.  I had to evolve as a person with a long-term health condition, and instead of relying on doctors to help me with my condition, I had to learn to rely on myself and learned to adapt and introduce my own coping strategies to help me cope with my health condition and new situation.  For example, recently I have learnt that mints really help with reducing the nausea that I experience and therefore as a result I know to always ensure that I have a pack in my bad when I go out.  In addition, as the dizziness has been particularly bad recently, I have learnt that wearing a hat with a brim helps somewhat as it blocks out the visual stimuli that I find bothersome and can precipitate an attack of vertigo or worsen the dizziness that I already have.

In terms of goals, they have changed considerably since my diagnosis in 2010.  I had thankfully, already achieved a major goal of mine in completing my University education and gaining a degree in Psychology.  However, other goals such as travelling, moving out of home and getting my first job had to be put on hold whilst my illness was bad and we were still searching for a diagnosis.  Now, that we have that diagnosis, and especially since last week’s hospital appointment which all but confirmed the dizziness as being neurological and being a lack of treatment or cure; as well as my current state of health then I am not sure whether I will achieve any of those goals that I so dreamed of years ago.   Perhaps I will given in time, although the goal posts may have to change slightly.  For example, I always had dreams of travelling to Italy, with friends, and although this dream is set to come true next year when I go on my cruise, I am not attending with friends but instead with parents as with my condition I will need looking after if and when flares occur during the holiday.

I am sure that my values have changed also; living with a chronic illness, you realise what really is important in life, and all those little mundane things that once seemed really important, don’t seem to all that important anymore.  I would like to think living with a long-term health condition and disability has made me more caring towards others and as a result am less judgemental and more tolerant towards others.