Looking To The Months Ahead With Chronic Illness & Pain

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Today I’m going to be using Sheryl’s fantastic writing prompts as part of her A Chronic Voice blogging link-up. The words this month relate to developing and transforming, so I thought I’d use them in looking to the next few months ahead with chronic illness & pain as we see the sunshine come out and Covid19 lockdown restrictions lift.

1. Ageing – With Chronic Illness & Pain

I don’t know where the time’s going and the inevitable is already creeping up: Another birthday in August. I’m busy practicing the sacred mantra I call Ignorance-Is-Bliss. Try it. It works wonders until you look in the mirror.

I don’t mind ageing per se. I love that we develop and learn and grow and all that wonderful jazz. But I feel like I’ve been frozen in time. It used to be that I’d yearn to go back to age 19, just before my tummy problems started. But that was nothing compared to what happened in 2015 with my first surgery that truly sent my health down the metaphorical toilet. Now I’m stuck age 26 when I had that awful procedure, with my life in limbo and unrecognisable ever since as things continue to get worse.

While my worldly age continues to eek up the number ladder, it doesn’t feel right in my head. I can’t possibly be nearly 33. Nuh-uh. No way. My body feels like I’m 149 and counting, and sometimes I can feel so grumpy & miserly most of the time, but I’ve lost so many years now that my increasing age seems totally foreign to me. 

There are so many unwritten rules and expectations in society for where we should be and what we should have achieved by certain points in our life, but life with chronic illness can totally change the landscape. You can’t use that same ridiculous social yardstick, but it’s not always easy to avoid thinking of how you seem to be so far behind in life. It’s also hard to not think about things you’ve lost and of the life ahead you can’t imagine having. You can’t help but realise how different you are, for better but also for worse. 

I try to turn the clock back by thinking about the days that were simpler and trying to find that girl again. The one that loved metal and rock music, the one that drank the guys under the table, the shy girl that was still trusting and naive, the one that didn’t sweat the small stuff. 

The girl who found it funny finding a penis-shaped cloud or would squint at a piece of burnt toast until she could see a Chuck Norris. People like to see Jesus in their toast but I’m not sure why when you can instead look for the unstoppable martial artist himself. It’s childish and immature, but who am I kidding, I still chuckle when I see a phallic cloud.

I want to hold onto that person for as long as possible, even when it feels she might have died a long time ago. There are parts of her still there somewhere, probably next to the yoghurts that look like boobs. 

Related Reading : Birthday Anxiety With Chronic Illness

2. Suffering – With Chronic Pain

I often wonder what suffering with chronic illness or anything else is like for other people. I tend to think I don’t suffer in the ‘true sense’ of suffering, but I do, in my own way. I always think there are far worse things going on in the world and that others go through far worse than I do. There are people who go through torture, quite literally, with wars and murder tearing apart lives and families. People who suffer in ways I, and perhaps many of us, could never imagine. But we’re all on our own journey and our experiences cannot be compared to those of others. I’ve said all of this before, too. It’s harder to reconcile when it comes to yourself though. 

If you’re struggling, with whatever it may be, then that suffering should be appreciated in its own right. I could say I suffer with chronic migraines, and they drive me up the wall because it’s 5 days a week they eat up and leave me close the edge. I could say I suffer with chronic fatigue and chronic pain and bowel twists and whatever else, but I’m always quick to berate myself if I start feeling grumpy about it because I know – I know – it could be worse. I learned that the hard way before my health really tanked, and I’ll never think that again. 

We can go from one side of the argument to the other. From feeling miserable, having our lives focused just on those things we struggle with, feeling frustrated and maybe even a little resentful and hard done to for our suffering. Or we can beat ourselves up with guilt and tell ourselves we’re just being pathetic, or maybe even that we deserve it.

Neither approach is healthy or helpful, of course. A mid-way point would be sweet but these things are never quite that easy, are they? I suppose the key here is to recognise and really appreciate how each individual experience is unique and valuable without comparison, and that we deserve to treat ourselves with kindness. You’re entitled to feel however you feel, and we all cope differently, too.

At the same time we need to avoid letting ourselves get swallowed whole with the unfairness of it all, even if what you’re going through is indeed unfair and awful. Nobody can tell you how to feel, but at some point you also need to ask yourself whether how you feel is helping you or hindering you.

Only you live your live. You only have yourself to answer to. You know what you suffer with, and you owe nobody else an explanation for how you cope or how much you may struggle. 

Related Reading : Stoma Life – A Unique & Individual Ostomy Experience

3.  Transforming – With Chronic Illness & Pain

I’m attempting to work on transforming our home. Bit by painstaking bit. This is like a constant joke because I start something small – cleaning out two small drawers, for instance – and I never get even that finished before I’m totally floored. This is the wonderful life of unpredictable chronic illness. 

Then I get frustrated and angry because I wanted to get everything cleaned and organised and I fully intended to Mari Kondo the shit out of it all. 

Instead, the dining room is littered with stuff, the sofas have more stuff on them. My bedroom looks like it’s been ransacked. I’ve not seen the cat today, but he’s probably under another pile of stuff.

Transforming is a slow process when you’re poorly or managing pain, and it takes a lot to overcome the frustration that entails. Pacing is not my strong suit, especially when the to-do list is growing exponentially. I know how to pace, I try to take regular breaks, but it’s dealing with the sheer frustration and then anger at myself that I find so tricky.

If anyone sees Ms Kondo, ask her to pop by my house. I think a bigger house would do the trick because my medical supplies alone take up an inordinate amount of space.

Related Reading : 16 Books To Declutter Your Home & Spring Clean Your Life

4. Navigating – Covid19 Restrictions Lifting

Worldwide, people are navigating the continually changing nature of the Covid19 pandemic. We’re sick of hearing about it, but we also need to know about the current situation so as to prepare ourselves and be aware of the latest governmental rules and scientific findings.

It’s a worrying time for many, especially perhaps those with chronic illness conditions that mean vaccines may not be possible or may not be effective. You can only do your best to stay safe and control your own behaviour, but sadly you can’t control the behaviour of others. If masks, number restrictions and social distancing are no longer legally required, vulnerable individuals are not as able to protect themselves. For others, perhaps the lifting of restrictions will signal a return to some kind of normality.

Does anyone else feel like they’ve lost their marbles after all these months? I’m not sure I can look at a cup of takeaway coffee the same way again (don’t touch it!) or a Subway sandwich (have they cleaned their hands?) or a chippy (did they breathe on it?). 

I can’t remember what it’s like to stop for a cigarette after grocery shopping and not stress over antibacterial cleaning my hands first, then wondering whether the lighter will set fire to my hand. I’m so clumsy that I feel it’ll happen one day, it’s just a matter of when.

I can’t remember what it’s like not to Dettol the hell out of all the groceries before I put them away. 

But we do all of these things to keep ourselves and our loved ones safe. 

We just have to hope the marbles haven’t rolled too far away so that we can retrieve them once this is all over.

Related Reading : What You Need To Know About Covid19 Antibodies After Vaccination & Where To Get A Test

5. Visualising – The Months Ahead

Visualising the next few months is easy if you assume things will all tick along as they have been. But life isn’t like that, and if you anticipate sameness then there’s a good chance the unexpected will trip you up. 

Change and uncertainly are the only things we can be sure of when looking to the upcoming months, but there are things we can anticipate and prepare ourselves for, and it’s absolutely worth having some goals and hopes, no matter what they might be. 

What would I like to visualise? I’d love a milkshake in the park. It’s probably been nearly two years, so this is a high priority one. But I want it without having to think about masks or whether someone’s breathed on my liquid chocolatey goodness. Without having to think about what I’m touching & continually apply sanitiser. Without having to take my own drink tumbler to pour the milkshake into, or a picnic blanket to sit on so as to not get Covid on my arse. 

Things were never easy before the pandemic because of illness and pain, and Covid just significantly increases the level of stress and energy required to do anything. 

I want to visualise getting the house organised and actually moving like we’d hoped to before the pandemic hit. I can’t imagine this happening, but I’d like it to. 

I want to visualise less awful stuff in the news every day, but that’s not very realistic now, is it? 

I’m not sure whether I’d like to visualise surgery or not. I need it, but I want it like I want a lobster attached to my left tit. That means I don’t want it, just in case you weren’t sure. 

I’m not doing holidays or day trips or anything fancy this summer, so nothing new there. I’m just hoping for sunshine and warmth because I absolutely love not being dressed up like the Michelin Man. I want nice days to sit in the garden, as do we all, but the UK weather often seems to have other plans. A bit of natural vitamin D wouldn’t go amiss.

I’m thinking sunglasses, sleeveless tops and ice-creams. The problem lies with unpredictable health problems – I’m never well and I find that the window of time I have for being just about functional continues to gets smaller and smaller. You have to take any moments of nice weather as they happen when you’re physically able to, even if that means ditching the to-do list for a little while. Come on, sunshine. We’ve missed you! 

Related Reading : 10 Ways To Deal With News Overload & Emotional Stress

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Whatever happens and however the months ahead look, you will manage it. You can deal with whatever life throws your way, but I hope the summer is kind to you all. 

How are you feeling about the months ahead? Is there anything you’re hoping to do, are you in the middle of a transformation of some kind, or how do you feel about pandemic lockdowns lifting?

Caz  ♥