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.
[Tweet “Life has become increasingly unpredictable.”]
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.
[Tweet “Living with chronic illness can be complicated, but silver linings can still be found. “]
So, tell me what is the worst symptom that you live with?
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, a 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
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 to 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 skeptical 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 learned that even after getting a label, diagnosis is not the end of the story…
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 as 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 disabling 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!
Actually woke this morning with no #trembling in the legs and immediately thought ‘So that’s what normal feels like!’ #ChronicLife
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.
[Tweet “That’s the thing with chronic illness; the abnormal slowly becomes 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
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 reminding us of our old normal.
[Tweet “The times when our symptoms are mild, we are briefly reminded what our normal looked like.”]
However, this preview of our ‘before illness’ soon ends and again we’re 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 past surroundings. A preview of an old life that although can be seen it is out of our grasp.
When 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 about our old normal. When experiencing our old normal, therefore, it feels unnatural 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.
Once again it’s the most wonderful time of the year; and like the Christmases that have come before, we again have been inundated with various iconography associated with Christmas. Images such as Father Christmas, snow and Christmas trees adorn popular decorations, and greeting cards meant for the holidays.
However, in my opinion, there is one particular image that is often associated with the Christmas season, which is a perfect representation of those living with chronic illnesses. What is it, you ask?
It’s the snowflake!
It’s well-known that no two snowflakes are alike. Each one is entirely individual and unique – much like us spoonies. Not only are we individual, just like everyone else with differing interests and personalities, but also fits in with living with a chronic illness. Just as we are unique and individual, our chronic conditions and the way they manifest itself are just as unique. This can be especially true with neurological disorders like mine as well as conditions such as MS and myasthenia gravis (which are both known as a ‘snowflake disease’) because there are so many different symptoms and no two patients are likely to exhibit the same set of symptoms.
Snowflakes as well as being unique and individual, are also beautiful – just like the spoonies that I have had the pleasure of coming into contact with through my blog or my other social media sites. It is said that snowflakes are fragile, but when one or more snowflakes stick together, they actually become stronger.
During my journey living with this neurological condition, I have learned many lessons and one such lesson that chronic illness has taught me that there is indeed strength in numbers. On the days that my body has felt weak and fragile, and feeling that the hope that helps me through is diminishing, it is messages of support from fellow chronically ill people that really helps me through the dark days. These give me the strength to fight my symptoms and continue to live despite the often debilitating symptoms.
Recently, the symptoms that I live with on a daily basis such as the pain and trembling in the legs, the dizziness, fatigue, and weakness have been particularly debilitating, and as a result, I have been experiencing mild symptoms of depression that I often find accompanies periods of ill-health such as these. Part of these low moods, I have seen myself, comparing myself to others, particularly family and those friends who are close in age to myself, and feeling notably different to everyone else. And not in a good way.
Been a really difficult time for me lately…often feel so different from everybody else and not in a good way #spoonieproblems
However, snowflakes, and what they stand for can teach us that it is okay to be different from everybody else. It teaches us that being individual and unique is in actual fact a good thing and, it is these differences that sets us apart from anybody else, and what makes us special.
Therefore, perhaps when we know someone (particularly a fellow spoonie) who is struggling. Or who are feeling upset because of something which is affecting them and setting them apart, then maybe we should send them a card or a little present depicting a snowflake to remind them just how beautiful, special and unique they are – and that being different is more than okay.
Not only a beautiful piece of jewellery but a perfect gift for anyone who is struggling with being different…
Winter can be hard for those living with chronic illness and chronic pain. But even despite this, however, there are still many reasons for loving winter.
What Immediately Comes to Mind When You Think of Winter?
When imagining winter, which words or images are conjured up in your mind?
For many, they would answer with images such as the nights drawing in during the early evening. Heavy rain lashing against the windows. The sounds of the howling wind outside and fighting against the constant outbreaks of colds and flu.
This myriad of some of the images synonymous with winter paints a pretty miserable picture. Especially when juxtaposed with images of summer such as the bright, warm sunshine, colourful and vibrant flowers and so on.
Winter is a time to dread. Summer a time where everything feels alive and happy and time of endless possibilities. Winter is indeed the cruellest and relentless of the seasons.
It is only the start of the autumn and winter seasons, and already, I have heard many people complaining and griping because of the cold, wet weather.
The Unrelenting Horror of Winter When Living With Chronic Pain
For those suffering from chronic pain, winter can be a challenging time. The freezing temperatures can exponentially increase the amount of pain experienced, for example.
In my experience of living with spastic paraparesis (causing stiffness and weakness in the legs) the bitter cold weather and the constant downpour of rain increase the level of rigidity and instability that I experience, thereby increasing my pain levels.
During previous years increased levels of pain, stiffness, and weakness has left me reliant on my wheelchair for the majority of the time when out of the house.
Winter weather can often exacerbate symptoms especially pain
There are steps that I, and others living with a chronic illness and chronic pain during the winter months. These can include wearing thermals underneath warm clothing to lessen the effects of the cold temperatures on our chronic pain. Hot water bottles, warm blankets, and snuggly pyjamas are also fantastic at helping us keep warm. These steps can help us with the physical pain associated with our long-term conditions. However, they do not lessen the emotional impact that winter has on our psychological well-being.
The Emotional Impact of Winter on Emotional Well-Being
Many people experience some form of SAD (Seasonal Affective Disorder) a kind of depression associated with reduced exposure to sunlight. Light therapy involves sitting in front or beneath a lightbox. As well as more conventional treatments for depression, including cognitive behavioural therapy and sometimes antidepressants can help ease the symptoms of SAD.
Winter can be a miserable time for many and not a good time for those with chronic illness – Pinterest
I have talked about positive psychology before regarding helping cope with living with a long-term health condition.
One example of an exercise within the field of positive psychology is keeping a gratitude journal.
A gratitude journal encourages individuals to write down at least three things that have made them happy on that day.
Research suggests that by doing this, it can change the brain’s thought processes. It can even result in more favourable thinking patterns. Therefore, to be more positive and happier during the winter months, perhaps we need to remind ourselves of the reasons to love winter.
So what are some of the reasons we should love winter?
Reasons For Loving Winter: The Opportunity to Stay Indoors Without Judgement or Provocation
The cold and wet weather during the winter months provides the ideal opportunity to stay indoors. One that is the same for most people regardless of whether they live with a chronic illness or not. When I tell others I want to stay indoors; there is disbelief on their faces during the summer months.
I am barraged with well-meaning encouragement to venture outside, supposedly an apparent cure for all my ills. In the winter, on the other hand, others do not comment on my love of staying indoors. Let’s face it everybody wants nothing more than to snuggle beneath a blanket and enjoy a box-set binge when the bad weather hits.
As well as being not judged for spending so much time indoors, I also feel that I am not going to feel envious or that I have missed out on anything fun. Friends and family are also spending the majority of the time at home, choosing to stay in and binge the new series of TV programmes that tend to start when the weather begins to deteriorate. Recently some of my favourite television programmes have returned to the Autumn schedule, such as Grey’s Anatomy and Criminal Minds.
Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able) – Pinterest
Reasons For Loving Winter: Comfort, Blankets and Netflix!
Winter provides us with the perfect excuse to stay indoors and curl up with a blanket and a mug of hot chocolate. It furthermore provides us with the ideal opportunity to enjoy an exciting book; or watch a film that you might never have otherwise watched via Netflix. In other words, winter can provide us with the unique opportunity to bask in the enjoyment of being able to appreciate the little things that give us comfort and joy while also protecting ourselves from the atrocious weather. Whereas summer is all about the fast pace and cramming as much fun in as possible, winter allows us to savour each moment.
A mug of hot chocolate is so comforting during winter – always make time when out shopping!
I also love going to bed during the winter months and getting beneath my delectably thick winter duvet. For me, this duvet is comforting, especially when feeling the effects of chronic illness. Our winter wardrobes are also another enjoyable aspect of enjoying the cold and dreary months. To feel snuggly and safe beneath layers of warm layers of clothing such as big thick jumpers, woolly scarves and hats and thick socks when venturing outdoors.
I own a pair of Ugg boots which I continuously wear through the autumn and winter. They are so comfortable and also keep my feet incredibly warm. These boots are among my favourites and which people often comment on when out, which makes me feel good about myself.
My ever so warm and snuggly ugg boots!!
Reasons For Loving Winter: The Delicious and Comforting Food and Drinks on Offer
A further reason to love winter is the food! Winter food provides comfort during the cold months. Mince pies, apple pies, pumpkin pies and other seasonal treats that appear in the supermarkets. Winter vegetables can be roasted or used as ingredients for bowls of steaming soups or even baked into delectable pies.
Chilly evenings also provides the perfect pretext to enjoy a steaming mug of hot chocolate topped with whipped cream and marshmallows or sprinkles of cocoa powder. And if the weather is keeping you indoors, there is plenty of time to put everything you have learned from The Great British Bake Off into practice. Assembling a gingerbread house or experimenting with the abundance of seasonal recipes that you have always wanted to try but never found the time.
Reasons For Loving Winter: Halloween, Bonfire Night and Christmas!
Lastly, the most important reason to love the winter season is all the exciting events that occur during this time. Halloween, Bonfire Night and everyone’s favourite Christmas! These events provide excitement and wonder and the opportunity to come together with those whom we may not have seen for some time. It is hard to dislike Bonfire Night, as beautiful, colourful and vibrant lights are seen decorating the night skies.
Even if we aretoo unwell to attend a local fireworks display, it does not mean that we have to miss out. We can still enjoy the firework from the comfort of our own homes, which I often do.
Doesn’t everything look pretty and magical with fairy lights during the winter months? – Pinterest
Throughout November and December hangs the air of excitement and wonder as Christmas approaches.Houses, shops, and town centres illuminated with colourful lights and vibrant decorations which are beautiful and cheery against the dark and dreary winter nights.
Furthermore, with Christmas also brings a collection of beautiful food, heart-warming and cheerful family films. Television specials, festive events and activities, happy festive music as well as time spent with loved ones exchanging presents.
It is true that Christmas also brings a lot of activities that can deplete the number of limited spoons. Still, in my opinion, it is worth it for the happiness and the formation of happy memories that Christmas brings.
What are your reasons for loving winter?You can contact me via Twitter using @serenebutterfly or sending me an email at brainlesionandme@gmail.com.
