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.
If you would like to find out more about A Chronic Voice’s link-up party’s and read other contributions please click here.
Repeating
Recently my life feels like I’m Bill Murray starring 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.
Wondering
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
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.
Desiring
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.
Turning
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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Hi, Jo! I’m sorry you’re struggling. I am too. It’s just so boring and I want my life back! I love how you ended on a positive note. We can do this! 💙
Thank you 💙 Sorry to hear you are struggling too.
Hi Jo, isn’t it just darned frustrating, I hate being bored. At low times I can’t do anything but slump in bed. Its so tedious! Even listening to music seems out of the question and art. I wish there were less groundhog days and more active ones, for you and me. An old penpal filmed the country side for me. That really helped, but he has a girlfriend now and lost touch. But getting that was such a boost. Sending hugs x
Thank you Stephanie. Sending hugs back to you 💙
Hi Jo: I can relate. I’m going thru a crash right now myself, and it’s been 2 weeks. Feels like forever, but I fight going to bed to rest. I don’t know why I fight it. I feel like I’m missing out on something if I don’t stay awake, on my computer, and watching T.V. My husband has to practically drag me to bed at night, after I’ve fallen asleep numerous times sitting up. I missed a family party yesterday, because I was in no shape to go. I’m sure they will think poorly of me for missing it, but I don’t care anymore. Those who get it will understand. The rest will never get it anyway, so I don’t care any more. I lived on my own for 12 years, and just got married 2 years ago. It’s been wonderful to have someone to talk to now. I know it’s difficult, but things can change and we have to keep trying. Take care of yourself Jo. Sending hugs!
I hear this! OMG how I hear this… It’s a real struggle. To maintain sanity and calm when all we wanna do is yell at the top of our lungs, “Where the hell did my life go?!”
I found it helpful to learn about my patterns (I’m more screwed up around my period, if I don’t eat properly, when I’m stressed in life, etc.). Knowing what to expect and how long it should last helps me just stick with resting until the light is shining at the end of the tunnel. O’ve also learned how to employ this time in other helpful ways. I meditate (often guided because otherwise I’d be too mad to even TRY to focus), or listen to podcasts, or learn stuff on YouTube. The latter two require a lot of mental acuity, though, so brain fog days are spent meditating, watching nature, and catching up on Netflix.
Hi once again Jo,
I absolutely loved your post for this month’s linkup; I found it to be so poignant and relatable. Boredom, especially when experiencing a flare is something I regularly deal with; that feeling that life is just monotonous and repetitive. Days which feels like we’ve lived it many times before. And wishing for more, and more of a productive and meaningful life. Thank you for finishing the post on a positive note, I think we all need the reminder that life can and will get better.
Take care
Rhiann x
Totally agree, it’s as if I’ve written this myself.
Hope your feeling more well soon.
Thank you 💙
A great Blog Jo.
This is my take on it……..
M.E. – JUST CUT AND PASTE…..
Hair’s a mess, can’t get dressed
Can I shower, that’s the test
Done ok, the shoes are on
Now where the hell’s my energy gone?
Another day has been a waste
Another day just cut and paste.
Can’t get the hang of doing nowt
Want to do, wanna go out
Every day just the same
Precious life going down the drain
Another day has been a waste
Another day just cut and paste.
Made a plan, things to do
Gotta get out, meet with you
Head’s a traffic jam again
Cones are out, no working men
Brain’s just stuck in bottom gear
There’s no way I’m leaving here
Another day has been a waste
Another day just cut and paste.
Another day down the drain
Another day, lots of pain
Shakes like hell, couldn’t yell,
Could hardly even speak
Words not there, people stare
Me feeling like a freak
Legs like stone, feel so alone
Need to be safe back at home
Another day has been a waste
Another day just cut and paste.
Politicians do your sums,
We’re not a load of idle bums
Don’t just stand and bang your gums
Don’t just cut and paste
ME won’t let us live,
For that sin I won’t forgive
It gives a little, takes a lot
But beware our souls can’t be bought
My inner strength will work tenfold
To leave M.E out in the cold
To this Illness I will lay waste
Spread the word……Just cut and paste…..
By Bill Clayton
©2016
Thank you for sharing Bill. I love reading your poems.
I love your words here thanks for sharing :0)
Really good read & so so true. I’ve been reading this with the unusual addition of music (I find it very tiring but more so emotionally draining with an extra dollop of sadness & grief).
Why am I listening to music? All this additional stuff to make everyone feel better about lockdown is difficult to ignore. Actually I do have some good discipline here but when you have Andrea Bocelli stood alone (well with exception of organist & film crew etc) in the Duomo cathedral in Milan singing some amazing stuff to spread love & hope & healing – you can’t ignore it. I know it will drain my brain of power but it’s the lesser of two evils. With all of these one-off unique performances I feel like I’m missing out more than usual & it’s better to feel tired at this point.
I’m looking forward to a time when others are back to their new normal to hear how this time in isolation has changed them & has it enabled them to truly relate or empathise.
OMG. You put it into words. Every word of this is exactly how i’m feeling! Thank you so much, this helps me a lot, to be able to explain my therapist, because i’ve been trying to put it into words but my mind just goes blank. Thankyou❤