Hi everyone, I'm new, except for responding to a few posts over the past 2 or 3 weeks. This is a wonderful group.
I have Major Depression and was diagnosed years and years ago in my twenties. About 4 years ago was diagnosed with lupus and it seems I'm always in a flare of it.
For the depression I take 90mg of Cymbalta and for the lupus am on prednisone, methotrexate, and hydochlorquinine (plaquinil).
I come from a family of high achievers, and when I got sick
had to move back into the family, so to speak. I feel like a burden--I'm always sending emails to my siblings--about books they may like, photos---but they don't seem that interested in talking with me. In fact, I have perceived this attitude that's kind of condescending, kind of disgusted; not warm and I don't feel very loved or valued.
Every morning I wake up in a heavy cloud--wondering how my life could have turned out this way, feeling like a waste of space, panicking about what's going to become of me, and with a lupus rash blazing across my face (and my hair is falling out too.)
I need help with the mornings; it's like I'm waking up into doom.
jennifer x
Hi Jennifer it's ava here. I know exactly how you feel. The mornings are dreadful really bad. Infant the last 3 days i have been in bed the curtains shut etc font want to see anyone. Your not alone is the main thing i am in the same position. I also need help and are taking all sorts of meds as well. I feel like I have zero energy and no motivation. My head hurts its horrid. Many people will advise which is great. Small steps they say even though I can't do that either.
Ava
Oh I know... It's like forget the steps; I'm in a crawling mode...
I'm so sorry you're having to endure the same thing. You mention having the curtains drawn--do you find in the summer light it is harder to "live and move and have your being in"? I'm always more depressed starting--maybe mid April...the good news is: the Solstice has passed, the days are getting shorter and every day the light ( even tho it's kind of imperceptible right now) is shining at more pleasing angles and not so head-on and unbearable bright.
Are headaches a side effect of your meds? For some reason I'm not being able to refer back to your post--but it sounds like you just started several different meds and that's always hard.
And I'm sorry this post is so long because if you have headache you probably don't feel like reading at the moment.
Still, thank you Ava for taking the time to answer and encourage; esp. when you're feeling unwell. In fact, -that's a pretty big leap! (A kind of flight even)
I'll be hoping your head stops hurting--and also that you do well on the meds. Not very adept at getting around the site but hopefully we can keep in touch.
And again and again, thank you for helping lift me up (and not feel so alone).
jennifer xxx
Hi Jennifer, not good at getting around the site myself. I suffer with severe migraines which is affected by sunlight, noise and smell when I'm having an attack. The other month i had 14 attacks that lasted over a week. Yes this feeling is dreadful i don't even know what I'm writing and feel who am I to reply as I have no magic wand for this dreadful feeling Jennifer. It's horrendous it really is. How are you ? Ava x
Ava, hi, it's Jennifer.
That's a lot of pain you're dealing with and it seems fairly continuous...
And bless you for writing--I'm having headache now and it's so hard to focus
But I didn't wake up this morning under that horrendous feeling--and that hardly ever happens.
dreadful is a good way to describe it. I don't know. Does it get better for you as the day continues?
Hi Jennifer this forum helps a lot knowing others are in a similar position. It's extremely hard after my dad told my mum today that I am lying about my illness and won't visit them because I want to avoid them . Told them i was suicidal and in hospital what proof do they want ' a funeral'. Anyway crap day again of negativity from my controlling father .... Fed up, how are you? Ava x
Oh no. I'm sorry -- it's very hard when family doesn't understand. Are you getting good care where you are? It won't always be this way--the meds help and eventually you'll see some clarity.
I know that's hard to believe right at this moment.
Jen. xxx
And Ava, I'm sure it's hard for you a Dad to know you're feeling so bad and suffering to such an extent. Maybe he really wishes that the problem is what he told your mom. Just a thought.
jen x
Jennifer hi how are you ? Not slept all night due to dads comments. My dad is a control bully mental abuse of him all my life.. So changing my mindset is the hardest thing as he won't change at his age now ..... Thanks love Ava. X
Ava, hi. Hopefully right now you're getting some sleep. But I understand what you're saying. Have had a similar problem and am sorry you're contending with such.
If you feel up to it, it would be good to hear how you're getting along today.
Now if you are still awake, please try to relax your mind of that train of thought that we both know well. If even only for a pause of time.
Love, jennifer x
Ava, Jennifer again in kind of a P.S. Just go for a pause of time. Don't get discouraged if you keep finding yourself back on that track--that's good; it means you can pause again. There's a whole lot of good in a moment, you know... .
And Ava, how you helped me on Sunday--esp. Given the situation: so very well done! Heartfelt thank you.
Hi Jennifer how are you ? I did go to sleep for a bit yes. But gosh my head feels so heavy you know that horrid feeling. Fed up of the family not understanding especially my elderly father maybe it's a generation thing. I'm back in bed after eating its like my comfort zone. Will this ever end . Thanks Jen love Ava x
It's the couch for me usually; but today was a bed day too--and getting up to go to the bathroom due to side effects of medication. I know that heavy head feeling. Today mine just felt very fragmented. I tried to knit, read, write---but I just had to lie down. and practice those pauses we talked about---that's how I got to sleep last night. It's good to hear from you, and I hope you get a good night's rest and wake up tomorrow feeling as good as is possible. Love, jen. xxx