Thank you to the lovely Emma, who writes a fantastic blog at Not Just Tired, which raises awareness of ME/CFS and how to live well despite it, for tagging me to take part in #behindtheillness. This lovely exercise aims to share fun facts about yourself and let others know things about you beyond chronic illness.
Here we go!
Four places I’ve lived:
Minden, Germany
Chepstow, South Wales
Fallingbostel, Germany
Pontypridd, South Wales
Four places I’ve worked:
Sales Assistant, Somerfield Stores
Volunteer Resource Centre Worker for Mind
Volunteer Support Worker for those with Special Educational Needs
School Peer Counsellor during Sixth Form
Four favourite hobbies:
Writing my blog
Reading of any description!
Enjoying a relaxing spa day when I can
Going to the theatre
A great memory of going to see Legally Blonde. Such a fun musical and left with a great big smile on my face!
Four things I like to watch:
Films and particularly enjoy a lovely rom-com or something uplifting
Crime dramas – so much choice, I couldn’t possibly choose just one!
Loving binge-watching Arrow at the moment
Soaps – great to watch and unwind during the nights
Four things I love to read:
Anything by Jodi Picoult
Chick-lit for a bit of light reading
Crime novels
Other people’s blogs
Four places I’ve been:
Olden, Norway
Stavanger, Norway
Florida, USA
Cornwall on many a family holiday!
The beauty of Olden
Four things I love to eat:
Lasagna
Roast Dinner (Chicken Roast Dinner in particular)
Chocolate
Chicken Korma – ultimate comfort food!
Four favourite things to drink:
Water
Hot Chocolate
Peppermint Tea
Apple Juice
Nothing more comforting than a mug of delicious Hot Chocolate!
Phew! It was so hard to narrow it down to just four bloggers as there are so many wonderful bloggers that I would love to have also tagged (and more who have already participated!). But for those who have not yet been nominated, feel free to share your answers as I would love to know you all more.
Again, we have just bared witness as tour diaries turned the page over into a brand new year. And as such, we begin to reflect on the previous year and make plans for the next. With the best intentions, people make resolutions only to break them before the end of January.
When living with a chronic illness, however, life becomes unpredictable. Every day we wake up, never knowing how our bodies are going to behave that minute, hour or day. We never know how we are going to feel one minute to the next.
As a result, making resolutions to us seems to be futile. How can we make realistic and achievable resolutions when our lives are so uncertain, and our bodies unreliable? By doing so, are we setting ourselves up for possible failure by making unrealistic expectations?
Last year, therefore, instead of making such demands on my life, which due to my fragile body I may not be able to accomplish, I come up with a ‘theme’ for the year ahead. One word that reflects how I wish to live my life and be a reflection of the type of person I want to become. The chosen word is said to be a compass to help direct us to make smart decisions as well as a guide to the best way to live life day-to-day.
It is now my third year in choosing a word of the year. In 2016 my chosen word was hope, and my word for 2017 was grace.
I had been having a hard time, however, of choosing a word to help direct how I wanted me and my life to become. Inspiration came this morning when the weakness in the legs consumed me and was unable to get out of bed. It is unfortunately not an uncommon experience for me, and such ‘attacks’ have even known to last all day. The strength and function of my legs returned a couple of hours later and was able to get out of bed. Then Eureka, the word came to me – resilience.
Resilience is defined as “the capacity to recover quickly from difficulties.” It is a quality in which a person rather than letting failure or obstacles defeat them, they find a way to overcome such stumbling blocks and rise from the ashes. When living with a chronic illness, resilience is also about learning to recognise and accept that life with an illness is much like riding a rollercoaster, with many ups and downs. Secondly, it is about learning coping strategies to acquire the strength and ability to take the ride. Then, an action plan can be put in place to help ourselves better cope with the challenges caused by chronic illness.
Some say that resilience is a quality that I possess in great supply. These people see a person who despite everything a neurological condition throws at her, she still manages to get up and get on with life. But, then again I don’t have much choice.
But emotionally when dealing with setbacks and the upheaval of coping when the symptoms are at its worse, then I somewhat of a mess! The negativity and upset that it causes impacts on my internal dialogue, my behaviours and my self-worth, and leaves me feeling depleted and flat. So, resilience is my word for the year as I want to learn to be more conscious of how life with this neurological condition is impacting me and to decide how I want to react.
Emotionally, I want to be able to bounce back quickly after confronting such debilitating symptoms. To not dwell on the negative and instead more productive ways to cope when these do occur.
I am starting my journey to resilience by keeping a ‘joy jar.’
Every day it is going to be my mission to write something that gave me joy, or that something that I managed to accomplish despite the limitations that the neurological condition places on my everyday life. I can look back on these little notes of joy, positivity and encouragement on the awful days and allow myself to remember everything that I able to do instead of focusing on what I cannot or no longer able to do.
Wish me luck on my journey of discovering resilience!
Loneliness. Isolation. Solitude. Three words that I would describe life with a neurological disorder. Excluding words, of course, associated with the symptoms that accompany said condition. You become a prisoner to chronic illness; a prisoner in your own body.
Having experienced symptoms from a young age, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others think of me as odd and different. Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it is this that I have resonated with over the years.
Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the incomplete puzzle. Of course, I have had made friends, but just like the seasons, they have come and gone. So-called friends bullied or ostracised me. They were unable to understand my unusual ‘quirks.’ Rejection is something that I have dealt with over the years and perhaps is the reason why I find it so hard to trust people and remain protective of my heart, keeping people at a safe distance.
The Limiting of Symptoms
It’s difficult living with a neurological condition that affects your perception of the world. Some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls. Because of this, over the years I have had to decline invitations to such places to avoid the triggers that provoke the onset of my symptoms.
It seems that if you decline invitations on several occasions, you become a social pariah and such invites become no longer offered. And that hurts because it’s not that we don’t want to go on trips to the cinema or go shopping with friends, but symptoms of our health condition, unfortunately, limit us.
Feeling pushed out and neglected because of symptoms of chronic illness
We want to feel included, invited to events even if we aren’t always able to attend. Our anthem song has slowly become ‘All By Myself,’ and the lyrics “I think of all the friends I’ve known/But when I dial the telephone/Nobody’s home” has never felt so apt.
I feel limited by my condition. The dizziness is so disabling that it leaves me disorientated and confused. Trembling in the legs so severe that I have no idea when they are going to give away and unable to go out without somebody with me. And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, I spend the majority of my days inside the same four walls.
Prisoner to Chronic Illness
Living with a chronic illness can often feel like living in prison; imprisoned by debilitating symptoms which are so constant that they have become a part of everyday life. Debilitating symptoms that keep us chained to our homes, often even just our bedrooms.
During our first cruise, due to the severity of symptoms, much of the holiday was spent inside the cabin. Unable to even get out once off the ship to enjoy the surroundings that the beautiful countries had to offer.
And as much as I wanted to persist and visit the places our holiday had to offer. As much as I would like to get out of my ‘prison’ and participate fully in life, it is incredibly difficult. It feels as though I am being held hostage by the myriad of symptoms that accompany chronic illness.
At other times, it is not being held hostage by symptoms that keep me prisoner but rather the lack of opportunity.
Others may assume that I am forced to decline invitations due to ill health, or otherwise forgotten. But whatever the reason I’m once again excluded, ostracised. Even in the darkest times, experiencing the extreme depths of loneliness and isolation, I crave the company of others. The companionship of others who I don’t live with and already regularly see!
Finding Companionship Amongst Solitude
Amidst the constant solitude, we are forced to find companionship amongst books. Whenever I reread ‘Little Women,’ it is like saying hello again to an old friend. Failing that, on some of our worst days, then it is our favourite TV shows that help keep us company. Netflix is a welcome distraction from the silence and solitude that surround us.
You then have to endure seeing photographic evidence of parties and gatherings that you seemingly have been excluded. Little by little, it chips away at the self-confidence that living with chronic illness has already eroded. Amid the times where you manage to get out of the house, you feel awkward and unsure during social situations. After being stuck inside the house for so long, it seems that we have forgotten how to converse.
The vast community that exists of fellow warriors, helps with the isolation that living with chronic illness can bring. The friendships with others who can relate to what you are going through can bring welcome light into the darkness. At last making, you feel less alone in the world.
It is these relationships which help loosen the shackles. And which can help release you from the prison that living with a chronic illness has built.
Who else can relate? What do you do to get out of your personal ‘prison’?
I am so sorry if you can relate, and that loneliness and isolation is a regular part of your life. But remember that you are not alone. Feel free to comment below, or connect with me on social media (links at the top of the page).
Recently, I finished a six-week Mindfulness Course. I
I was referred to the course by a healthcare professional to help with the anxiety that I have lived with for many years and is a consequence of living with a long-term neurological condition.
Mindfulness helps to change the way you think and feel about your experiences, especially stressful situations. It involves paying attention to your thoughts and feelings in order to become more aware of them, less enmeshed in them, and better able to manage them.
Throughout the course, we learnt about the principles of mindfulness; specifically the triad of awareness, acceptance and non-judgement that the technique is based upon. Mindfulness teaches us to be focused and aware of the present moment, to acknowledge and accept our feelings without judgement or battling against them, to be better able to embrace them and ultimately let them go.
As the course was facilitated by Mental Health Services, the sessions were focused on the technique being used for anxiety and depression; our negative thoughts were described as being like trains, and when suffering from anxiety we enter the train letting those negative thoughts circumvent our brain. Mindfulness, however, teaches us to stay on the platform, but allow the trains to pass without getting on. Such a brilliant and simple metaphor to explain what mindfulness is and its function.
Mindfulness teaches us to let our thoughts pass instead of becoming entangled in them
As the course progressed, I began to realise that the technique could not only be used for anxiety management but also help with the stress that living with a long-term health condition can have, and as I read further to even help manage chronic pain, which something I have been struggling with for some time now. This is supported by much research which has shown that patients with chronic conditions reported feeling calmer, better equipped to deal with illness during times of stress and reported higher levels of well-being after incorporating mindfulness into their daily routine.
[Tweet “Acceptance, in essence, means acknowledging that of what we have no control of”]
After starting the mindfulness and relating it to my life with a neurological condition, I came to realise how little I have actually accepted my illness. When we are mindful, we give our full attention to whatever is happening in the present, and without changing the narrative and judgement of our thoughts and feelings. Acceptance, in essence, means acknowledging that of what we have no control of; accepting life as it is at this exact moment.
While in the midst of excruciating and debilitating symptoms, however, it is difficult not to judge – ourselves, for our perceived weakness or our failing bodies which cause these symptoms, to begin with. Nor do we as patients sit there without attempting to change our current experience – we try medications, heat/ice packs, warm baths, anything to try and ease the symptoms that are consistently bothering us.
Often I feel at war with my body when my symptoms are severe; I curse, hating my weak legs and the other symptoms giving me grief, wishing that at that time I was someone else, had someone else’s body. I worry about the implications of living with a long-term health condition, such as worrying about the future and as a result, my head becomes permeated with worst case scenarios. So perhaps I hadn’t reached acceptance as I thought.
Mindfulness in many ways somewhat resembles autumn (or fall). It is said that autumn is a beautiful reminder what a relief it is to let things go that we no longer need, or does not serve us any purpose. As trees shed their dead leaves during the season; mindfulness allows us to let go of any negative thoughts which don’t help us and only allows us to get stuck in the depths of despair and hopelessness.
[Tweet “Mindfulness allows us to let go of any negative thoughts which don’t help us… “]
Mindfulness instead teaches us to focus on the present; accept our illness and the way its symptoms make us feel allowing these thoughts and feelings to fall into the background enabling us to focus on the positives. For example, instead of focusing on the pain in my legs, I allow myself to enjoy the feel of the sun on my face or savour the taste of hot chocolate (my favourite Autumn/Winter indulgence!).
Mindfulness is much like autumn reminding us of the benefits of letting go
I am beginning to incorporate mindfulness during my daily routine, alongside the usual practices such as taking medications and journaling. It is not, unfortunately, a cure for the symptoms associated with my neurological condition, they still exist, but it is a coping strategy for times when everything feels out of my control (which is a lot!). There are days when I find it difficult, but like anything, it can take practice to perfect the technique.
[Tweet “Mindfulness is a useful coping strategy for times when everything feels out of my control.”]
Mindfulness I have realised can be a mechanism to help find the light, during the darkest of days.
Useful Reading about Mindfulness and specifically its use to help chronic pain and chronic illness:
Living Well With Pain and Illness: Using mindfulness to free yourself from suffering by Vidyamala Burch
How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing by Vidyamala Burch
I have usually talked about my experience of living with chronic pain in passing. However, I thought I would shed some light on what it is like living with chronic pain from my own experience. And from my own experience living with chronic pain is very much like attempting to survive a storm.
The Storm that is Chronic Pain
Living with chronic pain is like attempting to function through a torrential storm. A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.
The excruciating pain is limited to the upper and lower limbs. However, the pain in the legs is often much worse. The suffering is unimaginable; a crushing sensation, as if caught in a vice which is only getting tighter and tighter. Every step hurts, each step bringing stinging tears to the eyes.
Like a storm, living with chronic pain can be all-consuming and relentless.
At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.
It is crippling and unrelenting causing a giant red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.
Pain consumes everything; a storm that is so powerful and savage, rough waves pulling at the body, dragging you under, overwhelming you. And living with constant pain feels like that, it drags you under to the depths of despair. It is all-consuming and relentless.
If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause. Dealing with pain every day is draining. The nights laying there all alone with nothing but the pain for companionship is mentally exhausting. The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights. In the chronic illness community, we have a word for this – painsomnia.
The Unimaginable Suffering of Pain
Often, as the lack of sleep overwhelms everything else, a nap becomes necessary. But no matter how much sleep we, it is never enough. Sleep never eradicates fatigue. A vicious cycle of sleeping during the day and not being able to sleep at night, seemingly impossible to break.
Painsomnia can last all night and one in which you will try anything to distract you from the pain which usually consists of social media and Netflix
Each morning promises to be a clean slate, a new beginning of hope and promise, but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.
It is a constant companion, one who dictates how our day will go and what we can do with our day. We speculate when the next ‘storm’ will impact, although very often these waves continuously crash. Pain pulls us under; our body slammed from every side by the rough waters.
The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.
The Loneliness of Living With Constant Physical Pain
Pain can make us feel incredibly lonely.
Pain is invisible, and as such nobody ever knows just how much pain we are in, there is an expectation to participate in society even when consumed with pain. We don’t want to say no or cancel plans, but it often feels if we are being held hostage by pain, forced to stay at home trying not to be sucked under.
Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.
Due to constant and debilitating pain, a lot of time is usually spent alone
Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company. We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.
There are times when the pain wins; days when worn down by the pain that consumes us. Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain. Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass to help you find your way.
The Storms of Chronic Pain Cannot Be Stopped; Only Weathered
Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort. Despite the constant affliction of pain, we continue to hope for better tomorrows. We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.
The storm of living with chronic pain cannot be stopped; one that can only be weathered. The only way to try and survive such storms is to use pain management techniques and try to still see the beauty in life.
The storm of living with chronic pain can’t be stopped; it is one that can only be weathered. The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging. We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain – those which include pacing, relaxation skills, and diet and exercise.
And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with bated breath for the next storm to arrive.
After surviving the storm of a pain flare, we are left wondering when the next one will arrive…
