Beloved’s answer to cold weather, damp weather or what have you is soup. Home made read to go with the soup if you need extra comfort.
Soup, to me, means I’m sick. I rarely eat it unless I’m sick. It isn’t that I have anything against soup. I just recall it being an item offered when I was sick as a child. And so I’ve always felt that soup goes with sickness.
When I told Beloved this, he laughed and pointed out I have a chronic illness so basically I’m always sick so in theory I can and should have soup all the time. Of course he was also on the midst of making a large batch of homemade soup.
He does that now and then. Make a lot of soup because it’s easy to freeze and thaw as needed. And, as he has pointed out, it’s warming and comforting not to mention healthy. Plus, he will always say, it’s utterly convenient for a meal when you are in a hurry.
So when I had a bowl of soup earlier, I smiled. After all I am sick, and certainly felling the effects of lupus, so of course soup is the answer!
Now and then my treatment gets the best of me. It doesn’t happen often, or all the time. But when it does happen, it can seem like a never-ending trip through a dark tunnel.
On those days, the ones where treatment leaves me feeling like I’ve been run through an industrial shredded before being driven over by a steamroller, I may yearn for nothing more than continued sleep. The kind of sleep that takes over absolutely everything, the kind of sleep that lets you forget.
Some times on those days I don’t have the luxury of finding that sleep. I have things that need doing and no one else to do them, especially if Beloved isn’t around.
The dog needs her outings, bills need to be paid and life ticks on. So I drag myself as far as I can with the four-footed one. I battle through the pain, exhaustion and sickness as best I can. The four-footed hasn’t been able to grasp just how useless I am during these days.
When I can, I collapse and hope she will just settle down next to me at least for a little while. The days of treatment taking more control of my life may be becoming more frequent and it’s not exactly unexpected. Nor is it the first time I’ve faced this. However this is the first time I may have to face more and more of it with just the four-footed one. So maybe she will learn.
There is something to be said about creating one’s own hours and having the ability to do what one wishes from wherever one chooses to be. A dream to be sure, and yet some folks have it and live it. And I’m not going to lie, there are days when I wish more than anything that I had that all set up for myself.
I don’t. At least not yet. Perhaps not ever, but I may be trying it on account of life with lupus sort of makes adhering to schedules a bit more fun than I can handle at times. The ability to set my own hours and days would be a bit of heaven really rather than having to drag myself to work on the days when it all seems too much.
And working from home, bed, or the hospital if it comes to that, would make things so much more straight forward. No need for awkward explanations or dancing around a subject. Just me doing what I can when I can. Not that this is normal or typical, but there are times when you need to do what you can. And if you choose to work alone, the need to keep steady income as well other things such as insurance become rather important.
And that’s the catch with these things, there’s always, always, a flip side.
As a lupus patient, I have and continue to have an amazing roller coaster ride of incredible highs and quick, steep drops. There have been twists and turns and slow downs when I wanted things to go faster. And I know this is a ride that will continue for the rest of my life.
When I first for my ticket, aka diagnosis, for this ride there are things I wish people had told me. Things like this is the craziest roller coaster I would ever be on. Things like don’t take this ride without support teams in place aka good medical teams and friends/family as needed.
I wish someone had told me that the ride wasn’t going to bad, there are positives on this ride after all. I wish someone told me that I wasn’t going to be on this ride alone. I also wish people told me that my actions, or lack of them, could impact how the ride works. For example too much sun means a steep drop. Conversely, proper rest a no medication results in a climb to a good place. And with care and caution you can stay in that goodness place, to least for a little while.
I also wish that someone would have told me that it’s okay to be overwhelmed at times, to feel sad or mad about lupus.
One of the questions I am frequently asked, when people learn I have lupus, is why do I bother to continue to work. Some of this may stem of a lack of understanding how lupus affects me. Although I have had more than a few comments about how it would be nice to have the chance to not work for health reasons and still have the bills covered.
I’m fortune in that despite my lupus I can still work. Sure there are days I have to drag myself to work, force myself to work the day and drag myself home. But those these days aren’t the typical ones. The typical ones are with aches and pains and some hurdles, but the joy of what I do overcomes anything else.
I Suspect people view this as they do retirement. While we are working, slogging through the thick of things, we dream about those days when we don’t have to work. The days when we can sit at home or do whatever we please.
On the days lupus gets in the way of work, it isn’t like I’m out having a grand time of things. I’m miserable and unable to do anything. And i suspect that if it came to me not working, I’d go crazy with time. Sure you can fill it up, but on a very small limit I’m not sure exactly how much you can cram into that.
It truly is one of The oddest things that has happened to me since being diagnosed with lupus, I do not dream of the day I can retire. I relish each day I go to work, even though I may complain about a few small things here and there. Because I know how fortunate I am to be able to work and continue to do what I love.
There is something wrong with me. Seriously wrong with me. No not lupus, although that is something that is wrong with me, wrong with my immune system to be exact. But that’s not what I’m talking about.
I’m talking about how I should be resting, and yet I get this brilliant idea to try a recipe, or two or three. Today is just one fine example of what I’m talking about. You see I received a lovely recipe I have been wanting to try for a while so I had decided that today would be the day for me to try it out.
And my brain, while I was out obtaining the orange I needed for the recipe, decided that a nice Quiche should be made as well. My brain even pointed out that I could easily acquire the items needed for the Quiche since I was already at the grocery store. My brain suffers from overconfidence in this department. How do I know you ask? Because as I was heading to the checkout, I saw some cherries. Naturally my brain said we needed to make oatmeal cherry muffins was the dessert recipe was cool, but before we made the Quiche.
When I got home, my brain and I started to get to work on the dessert recipe. All was good. Mid-way through the muffins, I told my brain I’d need a small break before Quiche making started. Brain argued with me, pointing out that we could do this and we didn’t really have time to wait if we wanted the Quiche for our meal.
And so dear friends I let my silly brain talk me right into the deep end of using all my energy etc for a meal. Thank heavens brain knew enough to know that if we started and finished it all early, which we did, we could just rest and relax for the rest of the day and at least have food set for tomorrow.
An interesting thing happens when you get a diagnosis of a chronic illness. Well actually there are several interesting things that happen, from the whole grief cycle to sense of relief and motivation. But the interesting thing I’m referring to is the way some of us grasp onto that diagnosis as if it’s a life line.
We hold it tight and close to us and we treat it like a life-preserver. Sure the diagnosis is validation that there was something wrong all along. It also points forward to a means of treatment which is always a spark or flame of hope. But it’s easy to forget to take off that life-preserver and it just becomes a part of us.
We literally take on the identity of the illness into our own identity. For example instead of being a person who happens to have lupus, I could have easily taken lupus into who I was and basically hyphenated it to my name. The longer you wear that life-preserver the more it simply becomes part of your daily attire. Lupus makes me tired, therefore I am tired all the time. Lupus means joint pain and since I am lupus I have joint pain. Everything you do, at this point, is done with your illness first and foremost in front. For example, when invited to an outing, I would have to consider sun exposure, stairs and so on. If those were present or likely to be present, I would have to decline the invitation.
Here’s the thing dear friends. Yes I have lupus, but it doesn’t define me. Sure it limits me sometimes, but I also choose to limit how much I let it limit what I am going to do. Instead if I feel okay and I want to do something, I do. I may or may not have a flare issue. If I feel awful, I weigh out how much lupus will cost me and if it costs too much, I set it aside the thing for another day.
I certainly don’t introduce myself with lupus. If someone says “Hi I’m (insert name here)” I will respond in kind. I do not add lupus. I don’t address lupus unless it has to be addressed. Because I am not lupus. And if I can offer you one thing, it’s this: not becoming your illness is the most liberating thing you can do when you have a chronic illness. After all, you are still an amazing person with plenty of gifts and talents to share.