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It's okay to have a good day when living with chronic illness - Not Just Tired

Last updated: 03-13-2020

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It's okay to have a good day when living with chronic illness - Not Just Tired

It’s okay to have a good day; it’s okay to have a bad day. I posted this notion a little while back on my social media, and I think it’s something worth expanding on. As the words often come spilling out once I start writing, I thought I’d split this blog post into two parts! For the first part here, I’ll write about how it’s okay to have a good day when living with chronic illness. The second part – it’s okay to have a bad day – will follow when I find the spoons (energy)!

When living with a chronic illness, like ME/CFS, we often question ourselves, or worse, give ourselves a hard time for having fun on the good (better) days. Likewise, we often do the same on the bad days, when we feel awful either physically, emotionally, or both. I wanted to write this two part blog as a reminder that it’s okay to have a good day, a bad day, or anything in between!

Before I start, I want to point out here that our good days are really just the days when our symptoms are a little more manageable, and we may feel able to do a bit more. It is not like the good days when you are in full health and feel like a “normal” person. We often still feel rubbish. It’s just that we can cope with our symptoms a little better, and our bodies are not screaming at us, like they do on the bad days! Annoyingly though we’ll sometimes feel bad for doing something nice (or even just something “normal”) on these days. Why? You may ask. Well that is a question that has many answers! I’ll share some of them here.

When you live with a chronic illness like ME/CFS, that is often both invisible and poorly understood, you may feel that having a nice time, only adds to the misunderstanding. Like having fun means you’re somehow not ill enough. In the early days of living with ME/CFS, I would worry about leaving the house. What if someone sees me and thinks I’m not sick enough! I now realise that this is a rather silly thought to have! But still one that many of us have likely experienced.

See when your illness is “chronic” (long term), you cannot hide away forever (unless of course you have to because of your illness) and put your life on hold, just because of what other people may think. You have to live your life in the best way you can. It probably won’t be like other people’s “normal” lives, but I feel it helps to try and make the best of the bits we can. No matter how small or infrequent they are.

Yes, it may be confusing to those (most people) who don’t understand the illness, and you may feel annoyed/frustrated/upset that they don’t “get it.” They don’t know just how much effort it took to have this good moment, or that you’re still actually feeling pretty crappy inside. But in my opinion, I think we have to try our best to find ways to accept this, let it go (if possible), and just do what is right for us on that particular day and in that particular moment. Who cares what people think (well annoyingly me, but I’m working on it!)! We have enough to deal with without worrying about other people.

Still it’s a tough one when we just want so much for people to understand. When we find those people who do understand or are willing to learn about our condition, it is like the biggest relief you can imagine! However, we cannot put our (already limited) lives on hold waiting for people to understand (note to self!).

Another reason we feel bad (emotionally) for having a good day (or indeed a good moment), is that often we feel really bad physically afterwards. This is also known as “payback,” and for people living with ME/CFS, it is also known as Post Exertional Malaise (PEM) or Post Exertional Neuroimmune Exhaustion (PENE). This refers to the worsening of ME/CFS symptoms after minimal physical or mental exertion, and it can also be delayed by 24-72 hours or more. I’ll be honest and say I find this part of the illness to be really, really unfair! Having to “pay” for having a nice time, is quite frankly just mean!

It also means that when we are having a nice (normal) moment, there is a nagging feeling at the back of your mind thinking how badly am I going to pay for this later. And then when you inevitably do pay for it, you give yourself a hard time for having done it in the first place! Arghhhhh!! You may like this post I wrote on “the never-ending challenges of dealing with PEM.”

Another reason we may feel guilty for having a good day, is that other people may be more ill than we are. Or we’re aware that others in the same boat as us will be having a tough day. Since becoming part of the (very lovely) chronic illness communities on social media a couple of years ago, it made me become aware of just how sick some people are. I live with what can be described as moderate ME/CFS, and sometimes my symptoms can be mild, but they also make me housebound a lot of of the time, and I’m unable to work or do a lot of the physical and mental activities I used to enjoy.

However, some people live with Severe ME or Very Severe ME, which leaves people largely housebound or bedbound, and dealing with the most horrific symptoms. You can learn a bit more about it in this interview I did with David Bridger on living with Severe ME. People are also severely affected by other chronic illnesses, which I only started to have a real insight into, since learning about them through social media and other chronic illness blogs. I am very aware that my bad days may be someone else’s good days.

So, because of this we may be reluctant to share our good moments, because we know that many out there will be having a really rough day. However, since starting my “My Daily Thank You” and “Joy in.. the Seasons” challenges on social media, I have found that people just want to celebrate other people’s good moments, which is just so lovely. You may be having a bad day yourself, but when you see someone else who you know is battling with chronic illness, share a good moment, you can’t help but smile yourself.

It reminds us that the good times are possible and that it may not be too far away before we have one ourselves. Yes, of course, some days you may feel awful and not be in the head space to feel all jolly for everyone else. We’re not saints! But most of the time it lifts our spirits and keeps hope and joy very much alive!

This brings me on to another point, that many of us are on social media to raise awareness of our chronic illnesses, and so we may worry that sharing a good moment can undo all of that by  not reflecting the reality. Or we then feel we have to justify the good moment by also sharing how badly it affected us afterwards, for example. Maybe that’s just me!

I think it is important that we do share the reality, and make others aware that our good days/moments are not just as they seem on the likes of social media. But also remember that it is okay just to let a moment be a moment! There’s no need to justify it. For goodness sake you deserve it!

So let’s celebrate our good days! Or more likely our good moments! Let’s try not to care too much about what others may (or may not) think, and wasting energy wishing they understood. Let’s try not to spend our good days worrying about how we’re going to feel later. The payback will likely come anyway, and so give yourself a break. It’s not your fault you’re paying for having a nice time or indeed just doing something normal. It’s the annoying nature of the illnesses you’re dealing with. It’s not something you did or didn’t do.

Yes, we need to pace and be sensible of course, but sometimes we need to give ourselves a break. A break from the monotony and pain of chronic life. It’s good for our hearts and souls to let our hair down sometimes, or simply just find reasons to smile.

And let’s share our good moments. By all means shout them from the rooftops! By sharing them it may just brighten up someone else’s day or give them hope. Plus it makes your good moment go that little but further! It also let’s others knowthat it really is okay to have a good day when living with a chronic illness.

Please feel free to join in with “My Daily Thank You” and/or “Joy in Autumn” on Twitter, Facebook or Instagram.  This is simply an opportunity to share your good moments on social media. It doesn’t have to be big things. Just the little things that you are thankful for or that make you smile. If you add the hashtags #mydailythankyou or #joyinautumn, I will retweet any I come across on Twitter and also share on my Facebook page.

Wishing for you all to have many, many good days and moments ahead. Crossing my fingers!

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