I’m so tired, so very, very tired. Actually I’m exhausted, extremely exhausted and no amount of rest seems to help erase any of this tiredness. I could rest for a year and I fear I would still be tired.
This is part of my life with lupus, I know this. Just as I know resting is exceedingly important with lupus. The thing is, time is limited, there are only 24 hours in a day and what feels like a million things to do. Now I know, logically, not everything needs to get done, but emotionally I feel guilty if I don’t get everything done. I feel as if I am not pulling my own weight and leaving too much for others to do.
So I compensate, by cutting back on my resting until I can simply no longer ignore the need to rest. And the problem with this that I end up resting an entire weekend away just to be able to drag myself through my week-day obligations. You know what my weekends should consist of? Time with friends and family, not my pillow and sheets.
None of this is obviously new to me, and I’ve written about it before. But having just woken up from a nap (not something I normally do) I am reminded again that lupus, like many chronic illnesses has exhaustion as part of the issue in addition to being exhausted just dealing with the chronic illness. Please excuse me, but I’m so very tired and am going to settle down with a book and the four-footed one!
The four-footed one has found a new way to deal with the heat. While I applaud her ingenuity, I’d rather that she have not found this particular method to cool off. She has several methods for keeping her cool, from finding a patch of shade to flopping down in dew covered grass. (If there is no dew, chances are she will find the grass that’s been splashed with water and use that.) She has been known to roll back and forth in the grass to cool off as well.
But this, this new method is a bit much for me. What ever gave her the idea to dig up the nice, green, healthy grass in my garden is beyond me. But friends, she doesn’t just dig the grass up. Oh no, this dog is digging to the Center of the earth to create her wallow to roll in and catch a nap.
One wallow I might be able to live with, I might even consider it a garden feature. But my garden is currently featuring three wallows and they seem to be growing. Soon there will be one giant wallow, an enormous out of dirt, where my garden once was. Never mind letting your bare feet be tickled by the soft, green grass. Instead they will be coated with dust as they scrunch along harder dirt clumps.
Is this a fair trade-off? A cool dog in return for no more grass and soon to vanish flowers? The four-footed one seems to think so.
A friend was venting her frustration at having to slow down as she is getting older because things change. She missed being up all night and still being fresh and on her game for an early morning meeting. She was quick to point out that she could still pull off the early morning meetings after being up all night, but she would be doing so at a cost of being more drained later on in the day.
I completely understand, for I too have had to come to adjustments and realizations that how I used to do things can no longer be replicated exactly. However unlike my friend, I had to come to those realizations much earlier in life thanks to lupus providing me with a huge reality check. Sometimes you just have to find another way to get things done. And if you can’t find that other way, you find out the cost benefit of doing certain things and weigh out your options more closely.
My father once described me as a human version of the Tasmanian Devil because I was always into something on going somewhere, typically with my hair on fire as I raced towards whatever held my attention. My mother referred to me as a butterfly, flitting one place to the next, resting for short periods of time before throwing myself into activity once again.
Lupus made itself known, although not by name, through a series of events which resulted in my forced slowing down. Or rather I slowed down because I wasn’t sure what was wrong with me, but once we knew what it was the doctors would surely cure it and get me back to my usual self. Only once we knew we were dealing with lupus I was sure we’d be on the path to fixing it.
Except lupus, like other chronic illnesses cannot be fixed. It can be managed, the symptoms can be masked and controlled, but once you have it, you will always have it. It’s like the side-kick or constant companion you didn’t ask for or necessarily want, but you have now. And lupus, like other chronic illnesses, does not sit in the shadows or the corners just because the symptoms are being controlled. Lupus must flex muscle now and then and remind you that your life is now a life lived with a constant companion.
Being a bit stubborn, I was pretty confident in my early days of getting to know lupus, that I would be able to carry on as normal, keep up my pace of things and lupus would just sort of fit in with everything else. Lupus laughed at me; the kind of laugh that makes your abs hurt from how hard you are laughing as you wipe tears from your eyes. Lupus taught me that I’m far more creative than I thought I would be; I can budget like a pro. Lupus also taught me that you can’t always get ahead of change, you won’t always like the changes you must deal with, but if you can and will find a way to get done what is most important. You will just do things differently at times, and that is perfectly acceptable.
So I met a friend for coffee the other day. A friend I haven’t seen in a while. Life kind of got in the way of us getting together, well that and occasionally an ocean or two and a few thousand (give or take) miles. Now with this friend, let’s just say we clicked right away. I’m not sure how or why, but we just got each other from our first meeting. It was like we were always friends.
While we were having coffee, well technically she was having a tea latte of some type while I savored, or is that devoured, a coffee, we caught up on missing time. You know all the usual stuff, except her what’s new news was that her husband was dying. She didn’t lead up to it, didn’t soften the blow, just told me that he was dying and had a few months at best left.
Usually this is news you come up to in some what of a gentle fashion, or at least a slow lead up. But she felt there was no need for it. How she told me wasn’t going to change the fact he was dying. It wasn’t going to ease her pain or her loss either. She felt it as a raw open wound every moment of her life and she let her way of telling people be just as raw. It wasn’t mean. It wasn’t deliberate. It just simply was the way she said it.
She said that she learned that she had a need for speed these days, every second she spent on the road away from home was a second she’d have less with her husband. And yet, here she was, spending time away from him because life does go on doesn’t it? She found that with her desire for speed in getting back to him she also no longer considered things in the same light. A speed limit shifted from a hard fast rule to just something that was placed on a road. It didn’t’ take into account driver’s skill or the car’s performance. She also no longer worried about driving as fast.
Basically she was far more willing to take risks these days if it meant more time with him. And in having a higher tolerance and acceptance to taking risks, her frustration level with the slower, more cautious people was growing to the point of no return. And still she sat across from me, having a tea latter while she explained all of this to me. Her anger, her frustration, her despair all tumbled out and onto the table, along with a speeding ticket.
The ticket, she told me, didn’t really matter. Not in the big picture. She was certain there would be more of those as time became more valuable. She was positive there would be one for the drive to the airport for their final vacation. The type of vacation where only one person comes back in the same state as they left.
And then she would have a different need for speed. Speed would be important to get past those long and lonely hours. What she would be running to I wouldn’t be able guess. What she would be running away from? Herself and an empty house.
We visited far longer than I had thought we would and when I got home I looked at my four-footed companion in wonder. Marveling at her ability to simply live in the moment. Maybe if we figured this out the need for speeding would be less.
A friend of mine had come all the way over here for a visit, and I felt truly awful about it. You see I was supposed to visit her at her house, but I ended up being unable to travel at that time so we didn’t see each other.
After three other failed attempts she fly over here to see me. And all I wanted to do was slam the door in her face, lock it and barricade it with furniture. Oh and draw all the curtains in this place. Yep basically hide.
You see I’ve been have a few too many lupus-draining days in the past little bit so the house needed more than just a bit of a pick up. As in a hurricane blowing through the house would be a huge improvement. I mean dog beds are just wherever in this house, squeaky toys are here there and everywhere. And you know how people talk about the horrible pain of stepping on Lego? Try dog bones.
Now deep down I know she didn’t come to see my house, but honestly a person shouldn’t have to excavate a chair just to find a place to sit down! Between doing the minimum outings I’ve had to do and resting, the house hasn’t really been a priority. The dogs do try to help, I just don’t appreciate their help nearly enough. And with Beloved here there and everywhere, while no time for the house on his part.
So like an idiot, I opened the door, which somehow forced my jaw to drop and just stood there. Well to be honest I didn’t just stand there, I was kind of leaning on the door-frame with my mouth wide open staring at my friend. Part of me was wishing I had never opened the door. The other part was thrilled to see her and cringing over the state of the house.
She didn’t even bat an eye upon getting in the house. She excavated a chair, tunnelled her way to the kitchen where she rounded up coffee. Okay she didn’t really excavate a chair, she had to pet the dogs first, and then headed to the kitchen for coffee. I stumbled after her apologizing all the way for the state of the house. She finally turned to me and said “but you have lupus and work, why on earth would you spend energy that you don’t have on the house? It isn’t that bad, just needs quick clean up.” I could have hugged her then, but well, I have lupus and was in pain.
We had coffee, caught up and she told me that she was a bit worried about me since lupus had forced me to cancel each time we were supposed to get together. She thought I wasn’t taking care of myself and letting lupus control my life too much. In her words I “was trying too hard to be normal” and killing myself doing it.
And she was such a good friend that she helped with the quick clean up and told me she loved me and would see me the next day. It’s times like this that I am on the lupus yo-yo ride from the pits of despair at how lupus can rob me of energy, to a slide down to shame at not spending time with friends, to feeling loved, despite lupus.