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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Walking Through Life with Shaking Legs…

Recently I have been reading many blogs written by others who also live with chronic illness.  In some of these posts, chronically ill bloggers have been sharing their stories of living with their worst symptoms, and as a result, I thought that I would share my own personal story of life with trembling legs caused by a neurological condition.

If someone had asked me a few years ago what was my worst symptom, then I undoubtedly would have replied with “the constant and unrelenting dizziness.”  The dizziness leaves me with the feeling that my entire perception of the world was off-balance, and at other times my world was spinning around me, leaving me feeling disoriented and sick.  The dizziness can be so severe that when I am out in the big and open world, I feel unsafe and vulnerable as well as the feelings of unsteadiness that I need somebody with me to hold onto due to the fear of falling over.

Now, however, I would have to admit that the trembling in the legs has become my most troublesome symptom.  Like the dizziness, the trembling is constant, unrelenting and has become life-altering.  The severity of it does vary from day-to-day, sometimes minute by minute.  Life has become increasingly unpredictable.

This morning, I woke up at around 8.30.  Although I was awake, when I attempted to get out of bed, I was not able to because the trembling was so severe that I was incapable of standing or even to walk and therefore had to remain in bed until the trembling subsided.  It did after half an hour or so and was able to get up and start the day ahead.  This is unfortunately not uncommon, and recently it has become an increasingly familiar part of my morning routine; a rest from my broken body even before rising from bed.  It doesn’t just affect me in the mornings, however, suddenly finding my legs being uncooperative and too weak to do their job can happen at any time of the day.  Many times I have found myself abruptly crashing to the floor as the shakiness won the battle, leaving my legs giving way.

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Of course, as someone living with a chronic illness, the trembling of the legs is not the only symptom that I have to contend with – of course, the dizziness is still a constant feature in my life and am also dealing with chronic pain which at times is excruciating.  So what makes the trembling my worst symptom?

It’s because that out of all my symptoms the trembling is the symptom that I have no treatment for, and therefore no respite from the unrelenting shakiness of my legs.  Even though the dizziness is constant, I do have periods of breaks from the severe bouts, and when the volume is turned down on it, then I am able to find ways to distract myself from the feeling of the earth being tilted on its axis.

It’s the same with the neuropathic pain caused by my neurological condition.  Yes, for the most part, the pain feels like hell, but there are some small periods of time when the pain is bearable and am able to tolerate living side by side with it.  Also, the dizziness and neuropathic pain can be treated with medications, although they seem to be merely a band-aid which can easily be ripped off instead of a cure.  But at least there is some comfort in knowing there is a treatment plan for these symptoms; for the trembling however there does not seem to be anything to treat this particular symptom, and not even distraction techniques help to take my mind off the sensation.

The trembling, dizziness, pain and the other symptoms that make up the neurological condition I live with does get me down, but through all the trials and tribulations that they cause I try to focus on all of the positives in my life.  Such as the amazing support that my friends and family show me every day.  Living with chronic illness can be messy and complicated, but I choose to believe that there are still plenty of silver linings to be found.

So, tell me what is the worst symptom that you live with?

Feel free to comment below!

 

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Diagnosis is not the end of the story…

Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder however shows no signs of structural abnormalities but is rather a problem with how the brain functions.  It is a problem with how the brain is sending or receiving messages.  If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.  As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.  And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

 

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger too having been through it several times before.  I am not sure how I feel about this, initially I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially sceptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences however I have learnt that even after getting a label, diagnosis is not the end of the story…

 

A New Normal…

For a couple of days this week, imagine my surprise that I awoke to no trembling or even pain in my lower limbs.  None of the severe shakiness that makes me feel that I am balancing on jelly.  No sign of the often debilitating pain that feels as if my legs are being squeezed in a vice, and which makes me wish that I could tear my legs off and discard them like many young children do with their dolls.

For these couple of days, my immediate thoughts after waking and realising that neither of these disabling symptoms had returned were “So that’s what normal feels like!”  I had forgotten how it felt not to experience incapacitating pain and trembling in the legs.  They had become such a part of my life, that without it, it felt almost strange (although was welcome, if it was only for a couple of days!)

However that it is not to say I have always experienced these particular troublesome symptoms or to this degree as I haven’t, although I had struggled with them for so long now I am unable to recall when they first started.  That’s the thing with living with a chronic illness; the unusual and disabling symptoms soon become the norm and part of our daily lives.  Life with chronic illness slowly become our new normal.

A lot of people have experienced some moment in their lives when it feels that their lives have been divided into a before and after, whether it be through a bereavement, injury, illness or some other life event. A moment in their lives where they have to adapt to a new normal, the lives which they once knew becomes a chapter in someone else’s story.

Image: Google
Image: Google

Perhaps what is most difficult when living with a chronic illness is that we intermittently experience a glimpse into our lives before illness struck and its onset of debilitating symptoms.  Times when our symptoms are mild, or even nonexistent and we are reminded what our old normal looked like.  However, this preview of our ‘before illness’ soon ends and we are transported back to our new reality of pain, fatigue and the other symptoms that make up our conditions.  It’s we have a brief glimpse into an old, familiar room before a door being slammed shut before we had a chance to step inside and familiarise ourselves with our old surroundings. A preview of an old life that although can be seen it is out of our grasp.

When we are given a chance to experience aspects of our past life, however, what is most surprising is that it no longer feels normal, it feels odd as if that life no longer belongs to us.  When living with chronic illness, the abnormal soon becomes the norm and without us even realising, we forget what the old normal looked or felt like.  When experiencing our old normal, therefore, it feels abnormal and strange, as if that life no longer fits.

The new normal just becomes normal; erasing our past life and who we once were paving the way for life with a long-term condition and who we are now.

30 Things About My Invisible Illness You May Not Know 2014…

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I originally completed the ’30 things you may not know…’ meme back in 2012.  However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years.  It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible.  To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance.  It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such.  It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?

  1. The illness I live with is…
    A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis.  However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
  2. I was diagnosed with it in the year…
    2010
  3. But I had symptoms since…
    As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different!  The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
  4. The biggest adjustment I have had to make is…
    Accept the limitations regarding my mobility and accept my need for a wheelchair.  I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
  5. Most people assume…
    That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness.  Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
  6. The hardest part about mornings are…
    It has to be getting up out of bed!  Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
  7. My favourite medical TV show is…
    It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
  8. A gadget I couldn’t live without is…
    This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness.  But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go.  For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to.  More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
  9. The hardest part about nights are…
    Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis.  I often experience insomnia because of these symptoms and it’s even been known to wake me up!
  10. Each day I take __ pills and vitamins…
    9 pills
  11. Regarding alternative treatments I…
    Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms.  I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
  12. If I had to choose between an invisible illness or visible I would choose…
    An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
  13. Regarding work and career…
    I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
  14. People would be surprised to know…
    That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive!  Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat.  Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
  15. The hardest thing to accept about my new reality has been…
    I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
  16. Something that I ever thought I could because of my illness which I did was…
    It has to be going on a cruise.  Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
  17. The commercials about my illness…
    Are non-existent as the condition is rare.  In fact it is so rare that I haven’t met anyone else with the same condition.
  18. Something I really miss doing since I was diagnosed is…
    Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way.  Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
  19. It was really hard to have to give up…
    Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being.  I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
  20. A new hobby I have taken up since my diagnosis is…
    Blogging and writing.  If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing.  I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
  21. If I could have one of feeling normal again I would…
    Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
  22. My illness has taught me…
    To listen to my body, and that we all know when there is something wrong.  To never settle when doctor’s are telling you there is nothing wrong when you know there is.  To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
  23. Want to know a secret? One thing people say that really gets under my skin is…
    “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!
  24. But I love it when people…
     
    Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
  25. My favourite motto, scripture, quote that gets me through tough times is…
    It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
  26. When someone is diagnosed I’d like to tell them…
    It is not the end.  You still have a lot to offer just need to be open to new opportunities.  You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
  27. Something that has surprised me about living with an illness is…
    Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
  28. The nicest thing that someone did for me when I wasn’t feeling well was…
    Sending me a care package with things that I love and a beautiful card to add to my positivity board
  29. I’m involved with ‘Invisible Illness Week‘ because…
    To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
  30. The fact that you read this list makes me feel…
    I feel validated and supported so thank you!!

In the dark and in the unknown…

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…

Life on autopilot…

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