Feeling the deep

As a Lupus SLE patient, we are more prone to depression than say someone who is “normal” or not diagnosed with an incurable disease. It’s actually one of the first concerns my doctor had. Unfortunately for me this was not an issue that would come up then, but had already had a firm grip on me. You do the research and learn that it is actually very common for a Lupus patient to have Depression before ever getting Lupus. In this I mean a diagnosed and or full blown case. After all, there are many little such symptoms before they realize anything major is wrong. It was a life of Chronic migraines and depression for me that lead to my understanding that I was very much allergic to Gluten. . More still as time progressed and I let go of Gluten completely as I adjusted to a Celiac lifestyle. Yet it was the rashes, more than one or even two for me, on my face.  that really signaled the issue. But I want to talk about the depression side. For us it is not as simple the mild depression the “normal” person goes through. It is not as bad, for most of you, as the person who suffers from severe depression. Yet it is a constant knowledge that travels with us everywhere that we roam. To the store, to the kitchen, to the curb to check the mail, or to eat at a friend’s place. This weighted knowledge that we are not going to be cured.  There, I said it. We are not going to be cured. But is that a death sentence? It can if you let it.

Acknowledging that we can die is not the same as willing ourselves to die. Facing death takes guts. Guts are not something you find in the timid or the faint of heart, figuratively. To live with a disease that could kill you at any time takes courage. It also take a lot of management and forethought. If, like me, you are photosensitive, fatigued, and Lupus brought a party to your door (ie; it brought other problems and diseases with it) then you know how frustrating it is to live anything that even looks like a “normal” life.

First order of business is to recognize that there is NO such thing as NORMAL. Yep, I used that foolish word many times. Why? Because who do they, or you, think they are to decide what normal is or is not? Maybe I do not get to live out “the typical American Dream” or any other typical anything, but  I never actually wanted to be typical.

If you do want typical and some kind of normal, You are not alone. Nor are you to be ashamed of that. Nope. It just means you need to redefine what YOUR normal is. How can you achieve it without causing a flare-up? How can you set realistic goals that do not make your doctor give you stern looks at your next check up?

You may be asking; What does all this have to do with depression? Good questions, I am so glad you were paying attention. If not, don’t worry, we are lupiies! Depression is less likely to hit us, or at least less likely to steal away OUR normal if we do a few things to keep it from happening. I was a work-a-holic, super bouncy and very active person whom every one knew as vivacious and always up for an adventure. Strange as it may sound for an admitted introvert.

1- Grieve! This one was hard for me. Harder than I think anything ever was. I had to admit that life was going to change. For me it was a big change, which hit hard and drastically. I went from being able to bike from work and home to not able to get out of my bed. Things got better, but that took time. Time is what you have to agree to give yourself. Before you can move forward, really move forward, you have to say goodbye to your old life style and your old life expectations. You are no longer that person, physically. That person could do more, had more energy, more ability, and more opportunities. Yes, you may get angry at yourself, as I had, feeling that you wasted so much. Getting angry helped only to fuel me not to waste any more time. I became determined. But to get to that new and determined me I had to grieve for the old me. I thought about all the things that Lupus had STOLEN from me. I made a list of things I couldn’t do. I wanted to work up to being able to do those things again, even if just in a lessor way. It started small, actually with just brushing my teeth. That grew to other things. Now I can sew again, not often, but it makes me feel more myself when I can.

2. Time. Time wounds all heals. Right? Yep, that’s how it feels. As a Lupie it can feel as if one thing after the other is happening. You seem to fall apart at times, mentally and physically, if not emotionally. That’s okay. No, really, it is. You are human, you know. We are not perfect, though I admit to struggling with that idea after a life of being an over achiever. Now I feel at times like a worthless, useless, limited lump of Lupie. That’s okay too. I am human and I am going to feel that way from time to time. Everyone does. I just have more reasons to feel that way, better excuses. I hate excuses, which is why I had to decide to give myself time. Permission. That sounds odd until you really think about it. You must decide to give yourself, YOU, permission to not be okay. You must now give yourself, yes you, permission to take time to get better. Let me give you a great example of how you, like most people, have likely been not giving yourself permission for this very thing. The last time you had a cold or the flue, did you call in sick to work the entire time you were sick? Did you know that the average cold or flu takes at least 7 days to work through your system? (that just doubled, by the way) Most likely you just thought about it and had to admit that you worked most of those days. “I can’t afford to!” Right, because this world demands that you must go serve your employer first and foremost. Did you know that only 30 years ago that was unheard of. People did not go to work sick unless they were the stubborn kind who refused to lay down for even death. Now it is common place to be expected to buy the over the counter medication that allows you to keep on working, even though your body is clearly telling you it needs rest! Your doctor will tell you that as a Lupie you can no longer ignore that. You MUST give your body rest. Yes, I said MUST. Why? Flares. One day of rest could mean not having two weeks flares that cause you to be resting.

Is it just flares you have to worry about? No. Your body is now on a life long course of feeling like you have the flu.  How much you rest or how well you care for yourself depends on how bad those symptoms of yours will be getting. A rash on the back of the leg is a clear sign you need to get to bed now. Each of us have our own signs and symptoms to let us know that Lupus is about to rear it’s ugly head. The trick is knowing how much rest and how much work. This is not an over the night or over the week scheduling issue. It is a life long balancing act.  You need to give yourself permission to make a mistake, to rest, to just say NO. Try it. “NO.” “No, dear, I will not be able to do that. But thank you for asking.” “I am not able to join in right now, but I look forward to seeing you soon.” “Sorry, sir, I will not be able to pick that shift up.” “Honey, I would love to, but now is a bad time.” Saying no does not make you mean or ungrateful, or less lovable. It means you are being responsible and making a way for you to be able to do things in the future by caring for yourself now.

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