“But everybody’s changing and I don’t feel the same”
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.
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.
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.
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.
Well this is the third post I have done like this so far and I have seen some great connections. I’ll keep doing these off and on and I think they provide a great way for “active bloggers” to network. This post now has over 2,000 active bloggers waiting to connect in it. I encourage anyone looking for new blogs to view or people to converse with to browse through the comment section and network.
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 definitely 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 bad 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 to stand or even 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.
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. In addition, 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 everyday. Life with chronic illness can be messy and difficult, 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?
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 creates 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 by 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 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.
This post is deeply personal and difficult to write, but as I think it will resonate with many others who are forced to live with illness everyday, it is therefore an important one to write.
There are many times that I dislike myself and am ashamed of who I have become. If I could be anyone else, I would gladly choose anyone else’s life to live rather than my own. A lot of that is down to the neurological condition that I live with; everything that life with chronic illness has given me, I believe however that it has taken much more away. The symptoms that I endure, and the impact that it has on my life has stripped away friendships, my independence and ability to provide for myself through meaningful employment that was my aspiration after graduating university and before the deterioration of my condition. The dreams that I had and the direction that I wanted my life to take was snatched from me and was instead forced to reevaluate everything and take a different path.
I am sure that I am not the only person living with a chronic illness to feel or have felt this way. To look at others, measuring ourselves against them and ending up feeling rather superfluous in comparison. When I think of my family and seeing myself through their eyes, I often believe that I must be somewhat of a disappointment to them. After all I have not achieved anything substantial during my life thus far, rather my life consisting of being stuck inside the same four walls or attending one hospital appointment after another. These thoughts are not consistent and perhaps are worse during the darkest of days.
However, I came across the most beautifully compassionate and profound quote written by A.A Milne and famously said by his most famous creation, Winnie-the-Pooh.
Perhaps chronic illness are the largest part of ourselves that make us different but then without it then we wouldn’t be who we have become. Living with a neurological condition and its symptoms, for many years before being diagnosed, it has shaped who I have become as a person as a result. If not for living with a neurological condition, I may have become an entirely different person, but then it would not necessarily mean they would be a better person. I like to think of myself as a compassionate and caring person; someone who is there for others and perhaps this part of what defines me as a person is as a result of the experiences of living with this neurological condition.
We often think of chronic illness as being the defining feature of the negative aspects of our personality and lives in general – the loss of independence, loss of self-confidence and so on but perhaps life with a chronic illness may also be the influence for the positive aspects which what defines us. If it weren’t for chronic illness, I personally would never have been such an avid user of social media, or the author of a blog for example and as a result would never have found my close friends that I have made since sharing my experiences of living with a neurological condition. Furthermore, I may not have such a close relationship with my parents if it had not been for the condition that has affected them just as much as myself.
The difficulties faced when living with a chronic illness or neurological disorder are extremely difficult and as a result of living with these for many years we develop a strength and resilience that was not there prior to the onset of symptoms and may not have developed if not for chronic illness.
The people closest to me, can see beyond the neurological condition that I see as being such a big part of my life, and see my value despite the effects of chronic illness, and which I may not recognise in myself. They recognise the things that make me different from everyone else and yet still love me because it’s those differences that make me and despite me being ashamed of that which makes me different from others.
A.A Milne should be celebrated for not only his profound words and insights of life but also for making those who may feel different from everyone else be proud of those differences and allow themselves to celebrate their individuality.
Today I am sitting here alone in an empty and quiet house. And why is that? Well, sadly just over two weeks ago we had to make the hard decision to put our beloved dog Honey to sleep.
It was a comfort to know that we made the decision that it was in her best interests, as well as taking the pain that she must have been enduring in the final weeks of her life. However, that does not take away the immense pain of losing a beloved pet, as she was such a big part of our family. The loss is great, and the loss is even more evident as I am sitting alone in the house whilst experiencing unrelenting symptoms. Honey was a great source of comfort and companionship on my worst days, especially those that were spent whilst devoid of any human companionship. Although, if something such as fall were to happen, Honey would obviously be unable to phone or raise the alarm but just the presence of her was a comfort; during the worst falls that I have had over the years, Honey would always come to my aid, well with a quick sniff and lick to ensure that I wasn’t badly hurt before lying down by my side until one of her other humans came home. On the days where it was just me and Honey and I was unable to get out of bed because of weak and trembling legs, Honey would regularly run upstairs to check on me before settling on her favourite seat back downstairs. Other times, I would awaken from a nap to find Honey laying on the carpet beside my bed.
Now Honey is no longer with us, and its first time since her passing when I have both been on my own and experiencing one of my worst days and I am feeling much less secure and safe. I feel like a small child whose security blanket has been snatched from their arms. Without the dog around to comfort and protect me (yes, every little noise when left alone was seen as a threat to me and would be met with a lot of barking!) it has made this particularly bad day feel that much worse and feel a lot longer than the seven hours I would have spent alone.
For those like me, living with a chronic illness, pets can be a very important presence in our lives. This is especially considering most of our time is spent in the house, often on our own as those we live with go off to school or work, and we are left in the company of a beloved pet such as a dog. They help to ease our loneliness that we often feel when living with a long-term health condition, and shines a bright light during the darkest of days living with persistent symptoms. Honey made me laugh so much, even on the days when it seemed I had nothing to laugh about, but she would only have to look at me with her big, chocolate-brown eyes, or do something funny and it would a big smile on my face.
Yes, they provide companionship and support, but also they become a substitute for friends in a way, our close allies to attempt to live a full and happy life despite chronic illness. Our beloved pets, give us their unconditional love and support, and the fact that we live with unpredictable and often severe symptoms does not bother them in the slightest, in fact they often show us more love and affection because we do as they can sense that not all is well with us, and they only want to make us feel better in any way they can. This has been only been my experience of living with a dog for the fourteen years we had with Honey. Dogs in particular are incredibly non-judgemental, not caring what we look like or why we have cancelled on plans, unlike a lot of humans that we come across during our everyday lives.
There are an incredible amount of studies that have shown the many health benefits of owning a pet. For example, it has been shown that pets can lower blood pressure, lessen anxiety and boost immunity as well as increasing exercise for those with dogs when taking them for their exercise! There are also the social benefits to help kerb loneliness and isolation, such as the ability to meet new people whilst taking a dog for a walk for example. And yes, I agree that there are numerous health and social benefits to owning a pet, but for those living with chronic illness and/or disabilities they can enrich our lives in so many other ways.
Thank you Honey for always being there during my times in need, and for constantly being a source of comfort and companionship. Thank you for making life brighter when illness threatened to block out the light,