Space To Be With Lupus

My mother used to tell me that if you can’t anything nice about something or someone, you shouldn’t say anything at all. My father used to say that if you can’t behave properly in public, you shouldn’t be in public until you get a handle on your behavior.

My friends told me that there is no reason to be angry or to bounce off the walls. Beloved told me that it’s okay to be angry and to bounce off the walls when you have to deal with the ghosts of a dream from way back. He would also tell me that the pain sort of disappears and everything is kind of like a scene rather than the whole earth shattering life.

The thing is, I can’t always say nice things about lupus. Oh I’ve tried. And I’ve tried to found the positives that lupus has brought into my life, but sometimes I just can’t find the nice words. And I can’t behave properly because I’m tired of giving so much of myself or my dreams away.

Sometimes all I can do is look for the freedom and the space to be angry and loved. To bounce off the walls and to settle into a comfortable spot. And sometimes that seems impossible to find. Because friends don’t want to see you hurt or upset all the time. They want you happy and full of life.

No one wants to hear the tears of lost dreams, or the ghost of the girl I once was. Except Beloved. He listens. Sometimes he bounces off the walls with me. Sometimes he tilts at the windmills and other times he just finds a place to sink down into and hold me while I try to forget about that ghost of a girl.


Lupus Never Discussed

When you have a chronic illness like lupus, there are a lot of things that come with it that no one ever talks about. Sure we talk about the symptoms and the medications, but we don’t talk about those other hidden things.

No one told me I’d feel guilty for having lupus, for being able to work or go to school despite having lupus, or for not being able to keep plans with friends and loved ones. Not once did anyone sit me down and say yes along with all these symptoms and side effects, expect to feel guilty. A little preparation would be nice.

Another thing that isn’t fully discussed is the feeling of shame. Yes that’s correct. I feel shame for having lupus. As if somehow I failed to do something and thus ended up with this illness. Or the feelings of shame because of how lupus and my medications have altered my appearance.

Depression is another part that isn’t well discussed. I understand that some people struggle with depression on top of their illness and others do not. I am blessed to not have depression, but that doesn’t mean that I don’t sometimes have dark moods thinking about what could have been or what should have been.

A Little Fun

Now and then I get this urge to create things. Now and then I get this urge to do something about different.

Advocacy can be fun, it can be different, but it can also be exhausting and time consuming. There are a ton of amazing lupus advocates out there in the world. People who organize walks, fund raisers, charity auctions and meeting with the government.

I do not do any of those things. Not because I don’t want to, I just don’t have the energy or the capacity in some cases. In other cases it’s because it’s not within my area of expertise. Let’s face it, my skills are very narrow and not lending too much to advocacy.

So this is my attempt at creating a little something that promotes lupus awareness in a fun and easy way. Take a look, let me know what you think!

I Suck No Thanks To Lupus

I hate needing people to do things for me. I hate needing to ask people to help me. I hate not being able to do what I want when I want. I know that we all need help from time to time. And I know there is nothing wrong with asking for help. I also know that we can’t always do what we want, and most certainly not when we want to do it. Yes I know, it’s a fact of life. However it is a more common fact of life when you have lupus.

Just because I understand all of this, doesn’t mean I like it. And just because it’s more routine in my life, thanks to lupus, it doesn’t mean I’ve found a graceful way to navigate all of this.

The truth is, friends, I suck at the whole asking for help. Not because I don’t have people in my life who would help me at the drop of a hat. I’m blessed and fortunate to have these people in my life. The problem is me. Because I hate asking or help. I can’t explain why I struggle so much for this, but I do. I lack the skills to gracefully ask for help.

And far worse than gracefully asking for help, I am even less graceful about accepting help. Again, not because people do not offer me help, for they do. I just struggle with this.

And naturally people can’t always be there to help me when I want help. That isn’t there fault either. It’s me. Again. Yes, I know, I make things so much worse. You’d think I’d get better at this given how amazingly often lupus brings me this delightful adventure. But no, no I suck at this.

What I’ve Done…Hiding From Lupus

Overwhelmed does not even begin to sum up my life according to friends.  I’ve been to,d I have over scheduled myself and under scheduled down time.  I’ve been told that I care so little for myself that I run myself ragged.

Nothing is really as overwhelming as it was when I was first diagnosed with lupus.  I didn’t even know what tit as.  If I looked online or in huge medical texts, it basically said I was going to die, and soon. So I made a promise to myself.  I’d fill each day as best I could.  If my lif was going to be short, it was going to be full.  And by George if I wanted to do something, I wasn’t going to wait.  

Now that was all a number of years ago.  I didn’t die, obviously.  But I also never stopped with this weird approach of filling my days as full as I can.  Probably because it’s such a habit now.  So I just keep doing it.  It’s a bit like hanging on to something right because you don’t want to lose it, but when it’s safe to loosen your grip, you can’t.  It feels wrong and your hand won’t loosen up.  So you just keep gripping as tight as you can.   Guess we go back to what we know.

I don’t recommend anyone do what I do and most certainly not someone with lupus.  It isn’t  and your life isn’t going to be short simply because you have lupus.  Besides one of the best things you can do for yourself, if you have lupus is to be kind to yourself.  Rest when you need it, don’t try to push past the fatigue because it doesn’t work.  Trust me on this.

It’s also okay to admit you are overwhelmed.  Having a chronic illness means a lot of life changes.  And having a chronic illness that is, well, unpredictable, is very challenging.  So don’t be afraid to ask for hel.  Don’t do what I’ve done.

Eye See Denial

I had always assumed I would have tired eyes from reading too much. It stood to reason that with all the reading I do for work as well as for personal reasons, if my eyes would be tired, it would be from reading. Sure, add in the fact I use computers a lot, and therefore tired eyes would seem logical.

I had not counted on tired eyes from lupus. Well dry eyes which lead to feel like tired eyes. Dry eye disease isn’t uncommon with lupus. After all Sjorgren’s Symdrome is known to come come along for the ride when lupus enters your car.

I should have known this would be the cause, but I didn’t. Because denial is sometimes something that comes along with lupus as well. Or maybe it’s what comes along to help cope with the ups and downs of lupus. And I must say denial and I have become rather good friends, for better or for worse.

Denial is why I waited at times to seek medical help. Because some times you just need a break from things. And sometimes if you hide from things or pretend everything is okay (because that’s who denial works for me) it’s just easier. Until it isn’t. Because denial doesn’t protect you from ill health or bad things. It just sort of offers you a bit of a break, but may make things worse because you let things sit too long.

My tired eyes, as I called them, were things I denied. I denied that it was more than just tired eyes because I wanted just one thing, one thing, that lupus did not touch. But the truth is, there are a lot of things lupus never touches. Denial does that to you as well.

I Used To Know…

Once, I was the girl in demand. You know, the one you wanted on your team for quiz night. I could recall trivial, useless information at the drop of a hat. Get Beloved and I on the same team and we were unstoppable.

Once I was the girl who never studied and could still ace a test. There was a time, after all, when my parents thought that schools stopped giving out homework based on the tiny fact that I never seemed to have any. The truth is I just never brought any home. I had a system. The system let me do my assignments in the class before the assignment was do. As for studying, I just didn’t need to do that.

Of course as we get older, we have more information to sift through, to find the correct information for the situation. All of us will struggle from time to time to recall something used to be simple to do. It’s part of the process of gathering more information, of so I’ve been told. Frustrating, but just a fact of nature.

Lupus however also likes to mess with my memory, ability to recall and basically think through things at times. Most people refer to it as brain fog because it’s exactly like it sounds. Your brain is in a fog and you have to search for what you need in this thick, dense fog that doesn’t seem to want to move or lift off. Needless to say, this is also frustrating.

When you make your living through lecturing on a give topic, brain fog can turn what should be a simple class into an insane adventure. You can suddenly feel like you know nothing, even though you’ve spent over ten years working in this field, exploring one small theory. Sure you say, it’s bound to happen a bit as we mature, but we also settle into our topics. Except with brain fog it settles in so deep that you can be part way through a lecture and find yourself foundering towards a shoreline that should be familiar but suddenly seems brand new.

I’m not that girl any more. The girl you want on your team for quiz night, not when I have brain fog. I’m also not able to recall facts, figures or information at the drop of a hat any more. Not when I have brain fog. As a matter of fact, when I have brain fog, I’m liable to forget what I read two sentences ago. And I’m certainly not going to ace a test when I have brain fog.

It’s just a fact of life with lupus. But I’m also stronger because I’ve had to dig deeper within myself and learn to rely on others. I’m stronger for those things and that is all because of lupus coming into my life. So yes, I used to know all those fun, useless facts and could pepper them throughout my conversation without any hesitation. But so what?