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Life With Lupus

Four Years Later and I'm Still Learning


#1

Hello Friends,

It's been a bit. I'm (hopefully) finishing out the worst flare I've had since initial diagnosis. I've recently changed to 'my dream job' and I think that's part of it. Seems my body fights change. Mentally, I'm fairly good. Physically, my body is stubborn. I find that when I'm flaring that my mind runs amuck in fear of each flare possibly becoming my new 'normal'. I'll be honest- it's worrisome to me at times.

But I do believe when we are under physical stress, our minds go into panic mode. Mine does anyhow. It did this time too. But I did something a little different: I began to recognize the phases of my flare and slowed down. I've had this ugly disease long enough to know how my flares typically work. I've rested a lot more. I've paced myself in what I could accomplish and focused on what I still managed to get through despite it. It has helped quite a bit.

No, I'm not saying this is the 'end all / be all' for surviving a flare. But I am saying that a chunk of the battle may be in trying to aid ourselves in the mental aspect of it as much as the physical aspects. I know it's frustrating to not have people who don't get your symptoms. I've tried explaining it to many and wasn't successful. But there are some that I did manage to get the message to. I'll be straight with you. A person in great health probably won't get it. I won't assume that- but if they have nothing to compare it to, then it may be hard.

For those who have experienced some sort of acute illness with pain, you may be able to scratch the surface at least with explaining the levels of pain to them. As for the 'why do you feel that way?' part, there are plenty of illnesses that don't have a quantifiable reason why you get them. If they were all cause and effect, it would be easier to treat I would imagine. As for the negatives- I tend to treat my whole life with the Spoon Theory. (If you don't know what that is, google it- it's been a huge help to me)

I put time and energy into what is most important to me. I use it toward those who are positive. Let's be honest, if you have this disease you have to be a little selfish just to take care of yourself. Don't let anyone tell you different. I know it's easier said than done sometimes. My own mother had fibromyalgia along with other acute illnesses. For many years, I didn't understand why she felt like she did. I do now. If you don't currently have some positive forces in your life, I suggest finding some.

I've kept a journal for a long time. I talk with those I feel 'get' what I'm going through. I read. I rest. I'm realistic about what I can do now. I pray. I take each day in tiny increments. It's easier for me to try to do small parts of the day at a time instead of overwhelming myself with the thoughts of activities of the whole day. Does it help with the pain, nausea and stuff that we deal with? Not a lot, but I do cope with it a lot better. That's half my battle right there.

So with all that being said, know this: Don't give Lupus power it doesn't deserve. Be good to yourself. Be realistic about what you're able to do. Find positives in your life. Don't let anyone make you feel inferior for it. Most importantly, know you aren't alone. Sorry for the length.

Take Care,

Vicky


#2

Thanks for sharing this Vicky, I'm glad you have your dream job - you deserve it.

Good to hear from you

Trisha


#3

Thanks Trisha! I appreciate that. I am really happy there. My biggest goal is to stay healthy and work as long as possible. But I wage this one day at a time.


#4

Beautifully written :slight_smile: something all of us lupies need to remember, we aren’t being selfish by taking care of ourself. Thank you :slight_smile:


#5

Beck, you are quite welcome. Seems like oftentimes the guilt presented to us for feeling bad takes front and center because the rest of the world doesn't understand it. But like the spoon theory says, our energies vary from day to day and we have to use them sparingly.


#6

This is just what I needed to hear today. Thank you for sharing! I feel so guilty for slowing down and not doing for everyone like I want to but when I don’t take care of myself then I really pay for it. That’s my current situation! Yuck! Looking forward to finding out about the spoon theory.


#7

You are more than welcome. We all try so hard to appear as 'normal' as possible and sometimes we pay for it. I've began exercising again. (about 3x / wk) and I'm listening to my body a lot more during my workouts. I know I'll pay for it if I don't. It's hard not to do as much as we would like for our loved ones. So, I totally understand that.