The Unchanging Existence of Life with Chronic Illness

“But everybody’s changing and I don’t feel the same”

– Keane

Well, Christmas has now been and gone.  The presents have been enthusiastically ripped opened.  We’ve overindulged ourselves with turkey and all the other delicious trimmings that adorn our plates (as well as all the chocolates that someone has inevitably bought you!).  Sick of turkey yet anyone?

Now as we enter the last week of 2016 however, it is a time to reflect on the year that has passed and the journey that we’ve been on during the last 12 months.  Change is an inevitability of our human existence, as Meredith Grey once said “it is literally the only constant in science.”

However, when living with a chronic illness or long-term health condition, we can often feel stuck;  that our lives has become stagnant.  Every year when reflecting on the year that has passed we often come to the stark realisation that although change is apparently inevitable, our lives with chronic illness has not, and are living with the same illness and its symptoms that we were the year before.  It seems that everything changes apart from life with chronic illness.

At the beginning of the year for instance, the severity of the trembling in the legs was intense, affecting my mobility and my day-to-day quality of life.  This year, it feels that nothing has changed much in regards to life with a neurological condition.   Chronic illness it seems does not understand time, keeping us firmly in its tight grasp and not allowing us to move, change and grow like other people our own age.

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Again this year because of illness, much of my time has been spent in the four walls of our family home – often needing to spend it lying down in cwtched up with one of my blankets

Today I am  surrounded by the same four walls that I spend the majority of my time in, and just like this time last year I find myself alone and isolated from the outside world.  It seems that although people may change, when living with a long-term health condition however very often our circumstances do not.  It feels although we are stuck, encased in quicksand, unable to get out.  Looking outside at the wider world we wish that we could be a part of it, instead of being confined to our homes.

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Isolation seems to be another symptom of life with chronic illness

That is not to say that 2016 was all bad.  There were times when the limitations and barriers that often exist became unnecessary and I enjoyed time away from the day-to-day existence of living with a neurological condition.  There was of course, the wonderfully relaxing  and breath-taking cruise around the Norwegian Fjords.  And several challenging but enjoyable days out with my carer including Hay-on-Wye and Hereford.

As enjoyable as they were of course, nothing about my circumstances of living with a neurological condition had really changed.  With every step, I could feel the trembling in my legs, fighting the terrible weakness that often causes my legs to give way and sending my body crashing to the ground. The excruciating pain that feels as though my legs are trapped in a vice-like grip. Attempting to ignore the dizziness and the accompanying double vision that threatens to knock me off-balance.  Just as these symptoms has for the past 365 days (and even more).

Also the lack of answers and knowledge regarding the symptoms that I am constantly living with is yet another aspect of life with chronic illness that has not changed.  Although an appointment to see a top neurology consultant in London has come through for April so hopefully, 2017 will become a year of gaining some much needed knowledge and insight, and learning exactly what I am up against.

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Time is constantly moving forward but living with a chronic illness we can often feel that we are stuck – as if our lives are on pause

But as we set to embark on a new year and wave goodbye to the last, reflecting on the events of the last 12 months, perhaps it is time to celebrate the small and seemingly insignificant achievements.  Achievements that although may seem inconsequential, for those living with chronic illness, are in fact a huge milestone and a precipice to small changes that may go unnoticed even by us.

Perhaps I have been too focused on the big changes that never happen in my life to really see and appreciate the small changes that occur despite living with a chronic health problem.  The increase in confidence despite the worsening symptoms, allowing me to venture further than I have before, for example.

I am hoping that 2017 will be the start of even more changes in my life, yes it will be nice if those changes were colossal ones, such as a lessening in the severity of my symptoms or even a definitive diagnosis for my symptoms,  but even if this doesn’t occur then I hope that I can notice and appreciate the small positive changes that do occur.

What changes are you hoping for in 2017?

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My second year blogiversary and looking to the past…

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Yesterday, thanks to the wonders of WordPress, I discovered that it was my second anniversary of my very first blog post entitled ‘An introduction…‘.  After discovering that it was the second anniversary of the start of this blog I contemplated the changes that have happened since the publication of the first post of the blog.  Two years have passed and have now published approximately 225 blog posts since then as well as becoming active on social media, and also becoming involved in projects relating to chronic illness and neurological conditions.  However, on the discovery on my blogiversary it made me consider the past and the changes have occurred since the beginning of writing this blog.

Some of the changes have been good; such as the introduction of a couple of social groups that I now regularly attend; the discovery of a passion for card-making as well as the addition of a personal assistant in my life, which has greatly benefited myself as well as becoming less reliant on my parents.

However, there are also a number of changes that are not so good.  In looking over past blog posts, it made me realise how bad my condition has become.  I suppose, living with illness over a long period, you are not so aware of the changes until you contemplate the past and the reality of your condition as it was then; this could be in the form of looking at past photographs, or re-reading old blog posts or journal entries.  It is no secret, that I have been battling with dizziness since a young child, and although the dizziness was severe two years ago, it really has become so much worse since the start of the blog.

The problems with my legs has also worsened significantly worse since the beginning of ‘My Brain Lesion and Me‘.  At the start of this blogging journey, I had little problems with my legs; although they have always been stiff and had experience discomfort when walking, my mobility was not really affected.  Fast forward two years on, however, and my mobility has significantly worsened, progressing from needing to use a walking stick, to a crutch and now needing to use a wheelchair. And these two years has also seen the introduction of severe trembling in the legs, constant pain and now I have even been experiencing episodes of loss of sensation in them.

However, I am unable to change the past or the present of living with my condition, and it looks like I may have little control on the future.  I am hoping for more information at the end of the month after several more hospital appointments, although I trying not to raise my hopes too high, in case of disappointment.  For now, I will just have to live in the present and attempt to keep positive; to keep writing about my experiences of living with a neurological condition and to live the best life that I possibly can…

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Who knows what the next two years will bring?…

 

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.

“I think I can” and “I know I can” – Life with Illness causes doubts and a battle to remain positive

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Welcome to the second day of the National Health Blog Post Month 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 upon given prompts provided by WEGO Health.

Today’s prompt reads:

Little Engine Post: Write 3 lines that start with “I think I can…” and then write 3 lines that start with “I know I can…”

Living with a chronic illness is not a life choice but instead becomes a lifestyle; high heels and a little black dress is replaced with a comfortable pair of slippers and a pyjamas.  Not only does it become a lifestyle but also changes the way you not only see yourself but also the way you view the world.  It affects self-confidence, and once in areas of your life you were entirely confident in, now fills you with self-doubt.  So, sentences which started with “I can…” can sometimes turn into “I think I can…” or sadly sometimes “I can’t…”.

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I think I can remain positive despite chronic illness.  Yes, this is still one thing that I know I can do yet.  Living with illness is like riding a rollercoaster; there are plenty of ups and downs.  One day you are able to remain upbeat and positive despite all the things that we have to live with but the next day that upbeat and positive attitude disintegrates into a puddle of depression and low self-worth.

I think I can cope with the dizziness.  But sadly the dizziness is starting to get the better of me and my coping strategies that once worked so well is now not doing its job and is making me miserable as well as leaving me in tears nearly everyday.  Everyday feels like an upbeat battle; feeling like a war instead of simply being able to enjoy the day and all the positive things that happen.

I think I can write a list of all the things I like about myself.  It sounds like an easy question, right?  However, during all the times I have been asked to do this exercise, I have had a lot of trouble to write the list of everything I like about myself;  however give me a list of all the things that I don’t like about myself and I can write quite the list!

But what about what I know I can do?

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Well, I know that I can push myself with a successful outcome.  This week I found out exactly this.  I have missed several weeks of the weekly group that I attend because of illness and particularly the dizziness that I have been struggling with, however this week saw the annual Halloween Party and wanted to attend despite the severe dizziness.  On the day I really wasn’t feeling well and the dizziness was still very bad so really had to push myself; and I did and I managed to not only stay there but actually enjoy myself!  Even celebrating a win at Bingo as well!

I know I can use and stay in the wheelchair.  This used to be big problem for me because of the dizziness in which I live.  A concern of mine was that although I really need one due to the weakness and severe trembling in my legs I would never get used to it, and be able to stay in one for very long, despite the real need for it.  However, not only have I been using the wheelchair for sometime now but can also stay in the chair for some hours despite the dizziness.  I now am going to more places and able to stay out for longer.

I know I can rely and gain a lot of support from a wide network of friends.  Twitter has been a real lifeline for me, as I have met a lot of wonderful people and make a number of lifelong friendships along the way.  The support I receive from others when I am going through a bad time is truly overwhelming and I am thankful for each and every one of my new friends.

NHBPM Day Twenty-Two: Changes…

It’s Day 22 of ‘National Health Blog Post Month’.  One of today’s prompt asks us to write about we are thankful for – as I have already done this in a recent post (Day 5: Giving Thanks!) I have decided to use the second prompt.  The second prompt asks us to write about change.

Well, my life at the moment are going through some changes.  The biggest change is that I am going out more, and to new places, thanks to my new personal assistant whom I was able to employ thanks to a grant provided by the local council through a scheme called ‘Direct Payments.’  When I am out with my Personal Assistant, I am not just visiting places that I need to go – but am also starting to visit new places, or places that I have not  been able to access for a long time.  And for the first time, I do not even have to rely on my parents to buy essentials for me, such as shampoos and conditioners, shower gel for me anymore – I can get them myself and even decide on the brand for myself!

                 

The house – outside and inside has also seen some changes this week.  A few weeks ago, I had a visit from a Community Occupational Therapist, to have a chat with me and to look around the house, and whether any adaptations could be recommended to make my life easier moving around the house, and of course, to prevent accidents.  For example, outside my house there are steps leading to the front door, steps which had no rails to hold onto – this for me, causes a real problem, as when I need to circumnavigate steps or stairs of any kind, I need something which I can hold onto, to prevent stumbles and falls, especially when the visual disturbances presents itself as I cannot always clearly see the steps to safely walk down.  Before now, i used to walk down a little grass banking at the side of the house to get to Dad’s car – the Community Occupational Therapist saw a potential danger with doing that – as if when in the case of heavy downfall (which happens a lot in Wales!) the grass will get slippery, and leads to the increase risk for a fall.  So, she referred me for some adaptations to be done to the house – such as external rails for the outside steps, an internal rail for the stairs (we already have one, but the OT thought a second one on the opposite wall would be beneficial) , and a drop-down rail for the bathroom.

 

              

These changes have now all been installed and ready for action – and are already been incredibly handy for me!

Another change that has happened for me lately is the move from using a crutch all the time when I am out and about to using a manual wheelchair.  The reason for this is the worsening of the weakness in the legs, which for me leaves me unable to stand or walk for long periods – obviously when I am with my Personal Assistant, this requires me to be out for pretty much the entire day (around 7 hours), and so need a wheelchair to be able to manage this.

This doesn’t come without its problems however.  One of my main symptoms, as you all know by now is the constant dizziness.  The dizziness, can still be really bad, even when sitting down; a symptom which really won’t go away.  And so the dizziness, is causing a real problem when I am using the wheelchair – being pushed and seeing everything whizz past, doesn’t do anything to help the constant movement that I already live with – and almost makes me feel really unsafe sitting in the chair.  Using the wheelchair going into shops is also a problem, as it causes the need to look up to see items – and tilting my head back to look up is one of my triggers – and can set the dizziness to high!!

 

 

 

I would love to hear others’ stories about being new to using a wheelchair and perhaps some tips to help me adjust to the new experience of using a wheelchair.  Any tips would be greatly appreciated!!