Just diagnosed with Systemic Lupus. Any other caregivers have this?
My Heath has been bad since my sister died in 2013. I take care of mom alone now eventhough I have a brother he lives in another state with his family , he may move for business to Singapore in September.My niece who really helped me after her mom died has moved on and so its mom and I . I expected her to move on she still has her dad and his family So that's ok . I have been getting constantly sick these past few months , I work as a RN and I am 52 , I'm always exhausted and my urine shows protein and bilirubin my blood work called ANA was high . Now I have constant exhaustion and pain and always a sore throat and headache ... It never ends lol... I am under a lot of stress worrying and taking care of mom , she really is all I have now . She is in rehab now after her kyphoplasty and is doing the best age can . She goes to the senior day care during the day when I am at work and I have to pay a caregiver tolerate her in. Anyway how does Lupus affect you as a caregiver ? Or any immune disease ? Thank you
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I realize you may not be able to rest or sleep as needed and your caregiving may be too demanding to keep your stress level low, but if you lower your standards regarding how your home looks and in other areas (hard to do but sooo worth it!) your health will benefit greatly. As you go through your day, try to notice the things that don't HAVE to be done, even though you prefer they be done. Your health and well being have to take priority over anything that's not absolutely necessary until you work out the right balance between feeling okay and doing a superior job of caregiving and maintaining your home.
If you don't take good care of you, the autoimmune disorder will do more internal damage over time than you want it to. I pushed myself for years and suffered, thinking I had to get everything done. I never got everything done, just kept going and going. Now I get the important things done but I'm also more rested, relaxed, and living with far, far less pain and effects of each disorder! I don't know how this worked, but it did! It's worth a try for you, too, when you're ready.
Until the last 6 months of his life my dad didn't require a whole lot of hands on care from me. He just couldn't live alone so I moved him in with me. If he knew I was sick he wouldn't ask for help with anything and I'd discover that his pill box was filled wrong or that the stove had been left on. Little things like that. So I learned through trial and error to just not tell him I was sick. It was easier on me that way because in his thoughtful way of trying to do for himself he'd often create more work for me.
I'm sorry about your diagnosis. I was diagnosed about 8 years ago. It's no picnic.
Do you have other autoimmune disorders? I have fibromyalgia, psoriasis, psoriatic arthritis, & rosacea.
My psoriasis appears to have disappeared and I attribute that to my new habit of
slowing down and de-stressing. I never dreamed this was possible. My fibro pain has gone from miserably acute pain on a daily basis to low levels, which is astounding and a huge blessing for me. There's a lot more to how I reduced that but I'll only go into that if you have fibro also. My rosacea hasn't appeared in many months, so no embarrassing red outbreaks for me.
Best wishes to you.