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“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 have 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.
[Tweet “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.
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.
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.
Welcome to Navigator of the Seas!
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 have for the past 365 days (and even more).
[Tweet “These symptoms have been the same 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 a 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.
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?
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?
Feel free to comment below!
I was recently received a DM on my Twitter account from fellow blogger John Sennett asking me if I were interested in taking part in a campaign that he created called #iblogbecause, an initiative to spread positive messages around the blogging community. Here is his original post on the idea for the campaign to find out more and perhaps even to take part yourself. So here is my contribution on the reasons behind why I blog.
In my personal experience living with a neurological condition has in some ways stolen my voice and effectively trapping me amongst the same four walls in which I spend the majority of my time.
The pain and torment that the symptoms associated with my condition create in my life remain invisible to the rest of the world, of course, there are subtle signs of a life filled with pain and illness if one chooses to notice. But largely, the life I live with constant and relentless symptoms remain unseen, trapping me in a bubble that only I am aware of as the rest of the world walks on by.
And so I blog because it gives me a voice.
As someone who is somewhat of an introvert and not eloquent in the slightest when it comes to public speaking, I am unable to use my voice to raise awareness of issues and life with an invisible neurological condition. However, give me a pen and paper (or a computer and keyboard) and I am able to write as some people tell me quite eloquently and to use this to write what life is like with such a condition as well as issues that affect and are important to the chronic illness community. To have a voice and say in such matters despite symptoms keeping me from being able to leave the house.
I blog because it enables me from being able to meet others and making friends with such like-minded people and those experiencing similar realities to myself. I have read a lot of blogs from others also living with neurological conditions or other chronic illnesses and reading their experiences and thoughts has almost mirrored my own and reminded me that although we have different diagnoses and live in different parts of the countries or even living on different continents there are more that unites us than divides us. Blogging has allowed me to make friends and meet a wide range of different people, people who are there for me and able to lean on for advice and support perhaps even more than I had in my life before I started my blog and utilised social media as an extension of my writing. Through writing and this blog I am able to inspire others and in turn, inspire me.
I blog because it gives me a focus and an escape from being ill, despite that being the focus of the blog. Writing allows a cathartic release and escape from illness and pain. Writing, especially blog posts that are planned, rewritten and edited before being published in the blogging stratosphere takes my mind off being ill and from the symptoms that are making themselves known. Being able to write and have a focus beyond watching a film or a TV show, quietens the symptoms and allows me a creative outlet for everything that bothers me about living with a neurological condition.
I blog because it is something that I enjoy and above all, it gives me a purpose beyond that of living with chronic illness.