Getting back up from a flare up.
It’s hard to know what to call a deterioration in your health. Do you call it a flare up, a relapse, a decline? Do you say that your reprieve is at an end? I think we all use our own term to describe what we go through or we use a variety of them…in the hope that one may stick and make the person we’re speaking to understand.
I’ve had countless flare ups and relapses over the years. In fact, I’ve had so many that I couldn’t even put a number on it. So, why don’t they get any easier? I should be a master at it but I’m not because each flare up affects me differently and so each time my strategy has to be different. I feel like each time it occurs; it steals something from me. Every time you begin to build your life into something that you’d be content to live in…it’s snatched away and you have to start all over again. Its soul destroying. To have fought so hard, to come so far, only to lose it all over again.
And yet, I’ve watched those with Lyme disease and other chronic illnesses do this on a daily bias and I’ve often wondered why. Why do they keep going after each and every loss? What keeps you fighting? Is it your friends, your family, is it the passion you have for a certain hobby of craft or gift that lets you feel free, is it your sheer stubbornness and your refusal to believe that this is all your life has to offer? I heard a quote, a while back and from someone whose name is long lost to me, which said that we shouldn’t ask what the world can give us but what can we give it…I think life is a bit of both for all actions, supposedly, have an equal and opposite reaction.
Which leads me onto what actions I’m taking in the hope of a positive reaction.
There’s a lot of things I’ve struggled with on this flare up but knowing my limits is definitely one of them. Before my flare up, I knew if I did X, Y and Z then that would be my daily allowance of energy used up and if I went over that that I’d suffer for it the next day. But the bar’s been shifted, X, Y and Z no longer = me being tired but still managing the stares come bedtime.
I’ve found I can’t tell what my body is capable of anymore, I’ll feel able to go for a short walk and then discover that evening or the next day that, actually, it was too much for me and all my symptoms will flare up for a few days. It feels like you’re being punished for simply trying to function.
But…I have discovered this one, very inexpensive, trick. Although I started using it to help me remember my new tablet regime, which has gone from three rounds a day to eight, as they have to be taken as such ridged times. I then started using it in my daily life and it’s been working rather well so far.
I use the timer on my phone, to not only remind me of when to take my tablets but to structure my day. So that, when I go for a walk, I will set it for 30 minutes and at the end…even if I feel ok to continue, I’ll go home. If I still feel ok the next week, I extend it to 35 minutes. This way I’m testing my limits but in a very gradual and gentle way. I do this for virtually everything now, giving myself a set time to do a task and then setting the timer again to give myself a rest. My memory has become quite poor with this flare up, hence the need to remind myself to take my meds, and I often forget to rest or I forget what I’ve actually done during the day and so overdo things.
As I’ve started to be able to do more again, I’ve found the timer also pushes me to go that little bit further when I’m tired but my body has more to give. There’s a hard line between pushing yourself to rebuild muscle mass and strength and overdoing things – knowing the difference isn’t always easy to differentiate but I’m a strong believer in listening to your body…in knowing the point where you can push your body for more and the point where you need to stop.
This is something I’m far from perfect at and by that, I mean, I often listen and then ignore and then suffer later. Living with Lyme is a constant lesson in self-restraint between what you want to do and what you can do and that’s a lesson my stubborn brain is still learning but using the timer has been a bigger help to me than I had ever thought it would be.