If you'd like to see the introduction to this series, please click here to see part one.
Following from my previous post, bad days will at some point be followed by good ones. Even if you’re stuck in the longest flare of your life: believe me that good day is coming. For you that might mean a day where instead of only getting out of bed for the bathroom, you can sit outside for a bit and enjoy the sun and fresh air without suffering too much. Or it could mean that you get through your day without your familiar visits from nausea, pain, dizziness, tachycardia, 'insert symptom here', meaning you can do something fun at the end of it and genuinely enjoy it.
For me, it tends to mean going about my daily routine – doing a few light physio exercises, working my part-time job, maybe doing a chore – or half a chore. And at the end – still feeling like I have the energy to talk to my boyfriend!
Early on in my experience with chronic illness when I was not properly diagnosed and did not know what has happening with my body – I found good days surprisingly difficult. With POTS being my major issue, I would wake up on a day where my heart rate was more under control and I didn’t feel as dizzy and tired, and just end up confused and worried. Why was this happening? Was I getting better? Could I let myself hope for that, or would I inevitably be let down? Could I use this energy to do something productive, or would that send me back into a fatigue-crash? Was I not really sick?
That last question was the worst. Having had doctors around that time show clear doubt that there was anything wrong with me, and having run into (luckily not too many) people who really did think I was making it all up in my head, or faking it, I felt hugely insecure about the validity of the diagnoses that I did have. So, if I woke up feeling good, with ‘numbers’ (heart rate, blood pressure) that were more normal than usual, I would instantly start doubting myself. It might seem ridiculous to someone who’s integrity and sanity has never been brought into question in this way – but it’s so very easy to go round in circles in your head and convince yourself of ridiculous things when others have doubted you.
Luckily – as time wore on – the doubts faded. I received more accurate diagnoses and stopped going back to the doctors that treated me like I was delusional. This gave be the ability to learn to love the good days when they came and appreciate them for what they were. Little rays of sunshine in the midst of a storm.
To enjoy a good day – there are a few tricks to avoid the above thought spiral that I’m sure is familiar to many of you.
Don’t expect them to last
The thing about a good day, is that we can be lucky enough sometimes to have a string of them, even weeks or months of feeling better than usual. But more often – it’s one day - or maybe even a few hours of solace form the usual monotony.
So, when you wake up, or enter than afternoon where you don’t feel the usual “crash and burn” of 3 o’clock, just enjoy it while it lasts. Don’t expect too much from this gift you have been given. It will hang around while it hangs around, and just appreciate the break from the pain, fatigue, or nausea which usually dogs you. When it’s over, it’s over. And that’s OK.
There is always a chance that this is the beginning of real improvement for you and I don't mean to squash that hope. But treat it carefully. Hope is always good. But finding a balance of hope that improvement is coming, and acceptance that it may not is the key here.
Don’t overthink them
Don’t be like past-me! I know that if you have people in your life doubting you, this can be really hard. And this is where I would refer you to a post of mine “Pick your People”. Try, try, try not to let their doubts get to you. And hopefully – one day soon, or maybe already, you will have a validating diagnosis that allows you to block the doubters out. Good days happen with chronic illness, and they are magical gifts. Your ‘numbers’ might have days where they look almost normal. That is to be expected, especially if you have autonomic dysfunction. If you live with PEM for any reason, there will be times when you do something and for some reason – the fatigue crash you are experiencing doesn’t occur, or it doesn’t happen as dramatically.
This doesn’t necessarily mean ANYTHING. You could be improving, if you see a trend. In that case – great! But it doesn’t mean your illness has disappeared, or that it was never there. It’s just a good day. It might be the first of many, or it might not. Try to just ride the wave and go with it.
Remember you’re still sick
Good days for us can be a slightly mixed blessing. As many of you will know we can’t take a day we’re feeling good and just decide to go for a run when we’re a person who usually uses mobility aids. This will cause us to get worse. Our bodies, in most cases, are simply lacking the ability to create energy in the way everyone else’s do. We can’t just push ourselves when we feel good and expect there to be no consequence.
So – remember on the good days – you are still sick. Whatever your diagnosis, it’s still there and you need to take the same precautions you normally do. This way – your good days might stretch a little further.
This does NOT mean you can’t enjoy yourself. There are activities I am sure you’ve found by now that your body is OK with. Maybe on that good day – you take advantage and enjoy it by taking your wheelchair out for a walk with someone you love to spend time with. Maybe, your body can let you take advantage of your good day by adding a little bit of (physician approved!) exercise to your daily routine. Maybe you need to stay inside, but you have the energy to sit up and write, craft, do something with your hands that you enjoy.
Whatever it is for you, don’t let that good day go to waste. Find something that won’t cause you to go into a giant flare and do it. Because you don’t know when the next one is coming around.
So – four things this time – and yes, I will admit there is a tone of caution in this piece. That’s just the nature of our lives. We must take caution. The act of ‘soaking up a good day’ simply can’t be the image of reckless abandon in a pop music video where everyone forgets their lives and does whatever they want for 24 whole hours. We don’t have that type of freedom. But this does not mean we cannot find our own way of enjoying our version of a good day. It doesn’t mean we’re not ‘allowed’ to have fun. And above all of that, I think it’s really important we take everything we can get from our version of a good day. Because we deal with enough tough shit.
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