Thursday, June 4, 2015

Living With Lupus - The Crash


Howdy!

If this is your first time here, Welcome! If you came here specifically for this post in particular, I would assume that you either:

A) Have SLE/Lupus

B) Wonder if, or think you might, have SLE/Lupus   OR

C) Live with, or care for someone with SLE/Lupus

Those of you who've been reading this and/or my other blog, Go Ahead... Take A Bite! for a while, already know that I have Lupus. And if you've read certain posts in particular over the years, you've also learned a bit more about just what Lupus is and about how long and sometimes unbearable the road to a "formal" Lupus diagnosis can be. Lupus is an autoimmune disease, which (of course) means that it affects the immune system and because of that, it usually piggy-backs a whole host of other debilitating health issues along with it.

If you're one of the dear friends who go way back to the very beginnings of my life as a blogger, you also know that the cold Winters here in the Northeast can be the absolute worst time of the year for someone with these crazy health issues. ...and how that aspect of the illness has kept me away (at times a month or often more) from my blogs for long periods, without allowing me an opportunity to let you all know ahead of time that I'd be taking a break. I'm sure it goes without saying, but these absences also spill over into other areas of my personal and internet life. I certainly don't have the emotional or physical strength to keep up with the various social media networks that the blogs and I are a part of, but one of the most difficult and upsetting parts of this illness for me, is how it affects the amount of time that I'm able to spend with family and friends.

Someone told me a long time ago that a chronic illness can be like a death. A death of self. And like any death, it's something that you had to mourn. Now, that might sound pretty extreme or over the top to people who don't live this way. Trust me... It would have sounded pretty "dramatic" to me, too... before I got sick. But it's the best advice that I could give to anyone who asked me what the most important things were that they needed to do, post diagnosis of any painful and debilitating chronic illness, in order to start accepting what is happening to them and that it's the best way to to help you start to move forward.

Once you are able to wrap your brain around those things - and that is NOT an easy thing to do - you also need to prepare yourself to accept the fact that more often than not, even the closest people in your life will likely never fully understand how sick you really are.

That very wise person also told me that when you're chronically ill, your world shrinks. OK... It doesn't literally shrink. Obviously, it's a metaphor. But... that doesn't make it any less difficult to deal with. You don't do the things that you used to do and you don't often see the people that you used to see. And no matter what people might think, it's not because you don't want to.

Believe me... I miss the people in my life that I used to see on a regular basis more than I can say. And it kills me that I now miss out on so many things that I used to do. I wish at least once every day, that I could be the person I used to be. But, I can't.... because I have a chronic illness that has robbed me of all of those things.

If you've been diagnosed with a debilitating chronic illness, I'm sure you've either found, or are in the process of finding, a medical provider to help treat your illness. But I'll offer up one more piece of advice... Make sure to find a good mental health practitioner/provider and utilize their skills to the fullest. Being in pain is hard, but being isolated a great deal of the time can foster both depression and anxiety and that can be as bad, or worse, than the physical pain.

Source Google Images
So. Getting back to the subject in the title of this post... This past Winter was a little different for me. It's not that all of those nasty health issues didn't raise their ugly little heads. If anything, it was (and continues to be) quite the opposite.

But, that being said, there were factors other than the usual Winter time issues that helped to play a part in my absence from the blog at the end of last year and the beginning of this one. But what made it a different experience for me was that the last few weeks of 2014 and the start of the New Year was a time that I wouldn't have changed a moment of. Nope. Not even the "less than pleasant" ones. Not for all of the material riches that this world could offer.

OK, so what in the world could make me say a crazy thing like that? Have I reached a point where I've become a masochist? Or, maybe I've just finally lost my mind? Nah...

You see, back at the beginning of December, I excitedly and anxiously hopped on a plane and headed South, so that I could be present for and at the birth of our new grandson! (who, btw also happens to also be our first grandchild!!) He was born in the second week of the month and if you've been through this joyful experience already, I'm sure I don't have to explain that I had already made plans to stay on for a while after he arrived, in order to be able to spend time loving on the new baby and to also do my best to help out in any way that I could, while the new parents were getting used to being a family of three. (I guess I should make that five, when you count their furry kids!)

The Hubbs, (aka Grandpa) had to work for those first couple of weeks, but he drove down little before Christmas, so that we could all spend the Holidays together. I'm sure that it's fairly obvious, but having a brand new, sweet smelling snuggly soft member of the family, is by far THE best Christmas present EVER! Believe me when I say that we really hated to leave, but we begrudgingly headed back North a few days into the New Year.

So how did all of this change the impact of what the Winter months are usually like for me? I'll do my best to explain, in the best way(s) that I know how.

Source Google Images
If you live with any kind of chronic and/or physically debilitating illness, you learn very quickly that payback is inevitable any and every time you push or exert yourself more than you should. So, of course, I experienced some serious payback once I returned home. And I've been dealing with this long enough to know fully well that it was coming, long before I ever made the decision to go. But really... can you blame me for going anyway?

You see... even when you're sick, every so often an event or an occasion comes along that is SO important... SO special, that you make the deliberate choice to willingly and very happily, push yourself beyond your usual limitations; all the while knowing that there will be consequences. You do it, not because you're a masochist and certainly not because you have a need to impress anyone with some kind of proof of your so called "strength". You do it because it's so much more important and well beyond worth, any level of payback that follows.

Source Google Images
In a nutshell... The human mind can do some truly amazing things when the joys in life demand it. Unfortunately, these amazing things are often only temporary.

I can't speak to how others in my position deal with it, but in my case, I've taught myself to mentally (for lack of a better way to word it) go to a place where my brain works very hard to push the reality that I have a painful illness, as far out of the way as it possibly can. In essence, I'll will myself into what I suppose you could call a kind of temporary amnesia. That way, my brain then tells my body that it can pretty much do whatever it needs to do and that the pain associated with these actions, is more or less, an illusion.

Sound a little crazy? Yeah, well... keep in mind the fact that I also make sure that I have and use every possible tool in my "pain arsenal", in order to get through that period of time. Those tools include the usual suspects, like medication and grabbing as much rest as I can in between physical activities. It's surprising at first, what kinds of tools you also develop yourself along the way, that help you survive a particular situation. But, don't forget that every person who lives with a chronic illness is different and that the tools they use to get through a given situation are very personal to their illness and in turn, their experience with it.

Then, because (as I mentioned above) this thing that I do is strictly a temporary super power, once the experience is over, that part of my brain that has basically been on a self imposed hiatus, inevitably kicks itself right back into gear and clearly (often brutally) reminds my body exactly what it's been through. This is the point when my body wakes up from the oblivious state it's been in and it reacts.

I refer to this as "the crash". Yeah, I know... not terribly original, is it?

Definitions aside, believe me when I say that by my second day back home from that trip, I crashed. And I crashed BIG!

I spent the next two and a half or three weeks, sleeping an average of 18 to 20 hours a day. On those occasions that I did awaken, which altogether could be counted in minutes, not hours of awake time, I was so fogged over and I hurt so much, that I was well... useless. I was able to make it to the bathroom, or to the kitchen for a cold drink, or maybe a nibble of something. But cook a meal? Ha! Do even a small load of laundry? Not on your life! Take a shower? Um, maybe three times, that I can recall.

My poor, sweet husband... heaven help him, has been through this kind of crash with me more times than I can even begin to count and he knows only too well, what it is that's going to happen when it comes. Luckily for me (and sadly for him) it's made him quite capable of taking care of the things that need to be done, like maintaining a clean work wardrobe and preparing meals for himself.

...And that's when I start beating myself up.

No matter how many times we've been through this kind of crash over the last decade (plus), I always feel an overwhelming sense of guilt. Always. I tell him all the time that I'd never hold it against him if he decided one of these days, to just trade me in for a new unbroken model. Because in my mind, he didn't sign on for this. I mean, seriously?? Nobody would ever willingly sign on for this. At least that's what the never ending cycle of negative "self talk" keeps telling me. But, because of the very special heart and the incredibly loving soul that this man that I love with all of my heart possesses, his response is always the same:

"Yes I did. Don't you remember? For richer or poorer, in sickness and in health, til death do us part? I love you and I'm in this for keeps. And you know damned well that you'd do the same exact thing for me, if the tables were turned."

And he's absolutely right. I would. In a heartbeat.

In the grand scheme of things, being there for the birth of our grandson was just as amazing and just as wondrous as the moments that our own girls were born. As I said before, I wouldn't have... no, actually I couldn't have missed it. Not for the world.

And I now have a completely renewed perception of the how "things (ya know, major things like life and love) come full circle". And I've definitely gotta say, that part of it is flippin' awesome!

Well, I believe that's about it... for now. Trust me. If I were to continue carrying on in the direction that this post has started to take me, I'd most certainly end up creating a big ol' puddle of salty tears, which would in turn ruin my makeup and quite possibly, short out my keyboard. ;)

Oh... and since I don't have any reasonable expectation that my Lupus is going away any time soon and there will hopefully always be something that happens in my life that's worth "crashing" for, I'm sure that I'll be posting more about both subjects, again. And again. And again....

If you live with a chronic illness, how do you deal or cope with "the crash"? I'm sure we all have our own little tips and tricks. Or maybe you are just beginning this journey and have questions that I might be able to help with. Say hello and let me know in the comments!


Live Well,

Mary

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