Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life with chronic illness, from many different points of view. A Chronic Voice provides 5 writing prompts each month, and we use these prompts as inspiration.
June’s prompts are: Repeating, Wondering, Getting, Desiring and Turning.
Welcome to my blog
For those of you that are new to my blog, welcome. My name is Jo, I’m 44 and I live in Norwich UK. I live with numerous chronic illnesses and mental health issues including; ME/CFS, Fibromyalgia, osteoporosis, IBS, anxiety and panic attacks, depression and migraines. I write honestly about my experiences living with chronic ill-health and do what I can to raise awareness.
Recently my life feels like I’m Bill Murray staring in Groundhog Day. I’m destined to repeat the same boring day, over and over again.
The truth is, living with chronic illness is repetitive, limited and often downright boring.
The last few weeks have been particularly challenging and frustrating for me. I crashed quite badly, but no matter how much I rest, I cannot drag myself out of hole I find myself in.
The frustrating part is, I’ve done everything right; I have rested, backed away from stress and social media, concentrated on self care, and tried not to judge myself. But this crash is being decidedly persistent and is not responding to my usual tricks.
I don’t like to moan, but I also want to show the true challenges I face living with chronic ill-health. So I apologise in advance if this post is a bit whiny.
I’ve had enough now. I feel like a caged tiger – my body and mind are in a constant agitated state. I want to escape these four walls. I want to run out the front door, run down the street, and keep running until this feeling dissipates.
It’s not often talked about, but being chronically ill is so bloody boring at times. The same monotonous existence, the lack of things to do, or things to look forward to, all add to the tedium of a chronic life.
I’m bored! Bored of these four walls, bored of pain, bored of sleeping, bored of being sensible and pacing myself, bored of my own company, bored of not being able to watch TV, bored of not interacting with others, bored of not living. Bored, bored, bored, bored! I have had enough of this crash now.
I know the best thing for my health right now is rest, however boring that may be, but this gives me too much time to think.
At times like this, my mind is both my best friend and my worst enemy. It can keep me focused on staying positive, and determined to make the most of the life I have. Or my thoughts can spiral out of control, prompting me to think about everything I’m missing out on.
I can’t help but wonder what life would be like if I wasn’t ill. What exciting adventures would I be involved in? How different would a healthy life be to my current life? Would I even appreciate the freedom I had, if I didn’t have this chronic life to compare it to?
But right now I would settle for the strength and mental clarity to write. When I’m this ill I lack the energy to do stuff I enjoy, like writing. And without that focus I lose my purpose, motivation and optimism.
Boredom is insidious. I never used to get bored, I could always rely on my brain to keep me occupied. But right now my brain is only just spinning and I’m too tired to produce any thoughts worthy of consideration. I just hope this string of words actually makes sense to anyone reading it.
Getting bored, despondent and reckless.
Resting takes discipline and patience, but the longer I rest, the less patient and less diligent I become.
It’s like when you start a new diet. To begin with you are motivated and excited about a new challenge. But after awhile you get bored. And when you get bored, you cheat. But you don’t just cheat a little bit, like one chocolate bar – you binge and eat a whole celebration cake.
Boredom is a dangerous state for me to be in. I constantly feel like I’m on the verge of doing something reckless – the activity equivalent of eating the whole cake.
When I’m bored my thoughts race. It’s like my mind is making up for the inactivity of my body. And an out-of-control mind is not a good thing for me – it can take me to some very dark places.
I know my body needs to rest but I also know that if I don’t do something to combat this feeling, I will end up doing something desperate. So do I exhaust myself doing something I enjoy for the sake of my mental health, or persevere with resting and hope I climb out of this hole soon?
There isn’t a right or wrong answer. But, here I am writing instead of resting, so I guess I’ve made my choice.
It’s impossible to live with a life-altering chronic illness and not spend at least some of your time wishing for a more positive future, and desiring a different life.
I desire more from my life. I desire a life outside the confinement of my chronic ill-health – who wouldn’t? I have so much to offer. So much drive, so much creativity, so much ability – all wrapped up in a body that is unable to fulfil my dreams.
I desire so much to be the sociable person I was born to be – I crave this interaction. But spending time with others zaps my energy.
When you suffer from a chronic physical illness and also mental ill-health you are faced with an impossible balancing act. Spending time with others and doing activities you love improves your mental health, but it’s physically exhausting and aggravates many of our physical symptoms.
When I concentrate and take the time to rest, my physical health improves. But to rest I often have to isolate myself from others. This causes a deterioration in my mental health. However, when I embrace the time spent with loved ones and focus on my mental wellbeing, my physical health often suffers.
How do you decide what is best for your overall health? How do you choose what activities are worth the pay back? How can you manage this impossible balancing act? I haven’t figured this out yet, but if you have, please let me know the secret.
So, to the last writing prompt; turning.
I always try to finish my blog posts on a positive note, even when I’m not feeling particularly optimistic. And although the past few weeks have been the most challenging I have had for some time, I know this state is temporary. I know that if I continue to rest and look after myself, there will be a turning point where my health will start to improve.
And if in the meantime I overdo it on a few occasions for the sake of my mental health, then that’s ok. I’m only human. I will do what I need to do to survive.
If you too are struggling with a prolonged crash or flare, please know that better times are on the horizon. Be kind to yourself. Take care x
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