Over the last few day’s I’ve been MIA, I’ve spent most of my (few and far between) quiet moments in thought. Not just of the current situation going on here in the Mango household (or the rest of the world falling to pieces for that matter) or of the future when everything is finally finished, but of the past. Or rather what I remember of it.
I’ve mentioned previously that my overall pain has lessened and it seems my symptoms are waiting at bay (for the most part at least). I’ve been able to do a little more, concentrate a little more and just be involved in every day life a little more. After almost a year of more bad days than good, I had almost forgotten what it was like to not have to put pain and symptom management above all else. This is what got me thinking.
Pretty much every condition I suffer from has the ability to hit hard and fast any time it feels like striking but at the same time can become cool and calm and almost non existent at times too. There is very little getting used to anything. This can be looked at from the positive; I’m not stuck in the same type or level of pain all the time. It can feel like having a break. On the other end it can feel like quite the negative, for two reasons. The first would be never being able to really get the hang of it. When old or new pain appears it’s like I’m treading water just trying to stay afloat of it all and I imagine it’s just as hard for my doctors to get a handle of whats going on so they can help. The second is judgement. Going from one day being able to barely get out of bed due to an earsplitting migraine, swollen un-usable joints and a stomach that won’t keep anything down to being out and about a-mile-a-minute like a gardening super hero from sun up to sun down, then eating the most amazing greasy double meat burger with a side of coleslaw no problem? It’s frustrating to me and more so confusing to others. Am I faking it the bad days? Am I over-doing it the good days? I get how much the people around me must see it.
Thinking about all this has really made me try and head down memory lane. Trying to recall what it was like before illness took over such a huge part of my life.
I forget what it’s like to only have to worry about movie theaters, star gazing, cats and outdoor mold (first two for anxiety attacks and second two for asthma related allergies). Back then it seemed like a hassle, but now…. I could eat what I wanted, go where I wanted, sleep when I wanted, stay awake when I wanted.
Speaking of which, I forget what it’s like to not have to work for a good night’s sleep. A good chunk of every evening is spent managing pain enough to get comfortable, doing a variety of low energy activities to quiet my brain and usually a couple hours (at least) of just hoping the moment comes where I drift off into dream land for a little while. Even with my panic disorder effecting my sleep some nights, on good nights, I was able to make up for it by sleeping for a full 10 hours no problem.
I forget what it’s like to be a daredevil. One of the hardest things coming to grips with a chronic illness that effects my connective tissue is knowing that even if I am strong, flexible and “fit”, I still can’t do all the things I once could or planned to. I’ve had to accept that a lot of epic things on my bucket list have to be amended or forgotten completely. Climb the Matterhorn when I turn 40? I have no grip now at 28, it’s probably not going to happen unless by then they figure out how to make me the bionic woman.
Then there’s food, oh glorious food. I forget what it’s like to not have to fuss over ingredients, go through food diaries (or write them) or to not have to turn down many a treat just because I don’t know how it’s made, or don’t want to go into a dietary debate (gluten, pro/con fiber, GMO, processing, etc). On the other end I forget what it’s like to give in to that temptation and eat it anyways and NOT have to deal with massive gastrointestinal revolt afterwards while trying to quietly tell myself “It was worth it.”
There’s a lot more to list, but hey, I forgot….
In the end, I think the worst one is I forget what it’s like to not wait for the other shoe to drop. As if having a chronic illness isn’t bad enough, living daily with pain and inability to do everything you once could. There is always the looming foreshadow of what’s to come. Even when symptoms are eased and well managed and in the case of diseases like Lupus that can be put straight into remission if one is lucky, you know that it’s a progressive disease. Its a matter of playing the waiting game and hoping you have to wait a long time till the next new symptom pops up.
I’m not trying to say it hasn’t been nice having a break from the more severe pain. If anything it’s been less ‘negative Nancy’ thoughts and more just quiet neutral reflection on how life has changed. While worrying a little bit about what’s to come. It’s better than being on pins and needles like usual when I’m stuck waiting to hear from the doctors/ labs. I’m sure if I didn’t have so much to concentrate on right now I’d be a total train wreck of nervous energy.
On a different note though, there are a few things I’m glad to forget.
I forget what it’s like to immediately judge people for how they appear. I’d love to say I never went through that phase as a teen, but I’m sure I did. Taking people at face value not knowing what could be going on underneath. I don’t remember what that’s like. My illness has brought out compassion and understanding, even for people that seem rude, lazy or antisocial. The only assumption I make is that we all have a story and that we all deserve respect and not judgement.
I forget what it’s like to be ungrateful for the good things in life I have. I am thankful I had my kids young when I was very young and much healthier (I couldn’t even imagine starting now). I am thankful for my friends and family who have stuck with me through it all, they mean more to me than they could even imagine. I am thankful for the ease of pain on the good days and I am thankful for the little rays of hope that shine through even on the worst of days. I’m pretty secure in saying there will never again be a time in my life where I will take for granted many of the things I once did before I fell more ill.
I forget what it’s like to feel completely alone. While in my personal life, it’s true that there aren’t many who understand and on days spent in a crowd full of relatively healthy people, it can feel a little isolating. In time’s like that, I have somewhere to turn to. Here. In the blog world. I have found so much relief from being able to read, write and generally communicate with so many also struggling through their health complications. On days when the ‘real world’ is falling apart, nothing beats being able to still feel like there are others out there like me. That we can help each other, comfort each other or simply just lend an online ‘shoulder to cry on’. I hope to never have to forget what that’s like.
I’m sure I’m not the only one who has a few “I forget what it’s like”s. What about you?