I Just really need a safe place to vent

Depression sux for real, being in the hospital more than home since beginning of December is tough. Tough on me and tough on my family. Look, I don't want sympathy, I just really need to vent. Today is the first time that I realize the last organ left intact and not attacked by lupus and the other auto immune illnesses that I have, has been my brain. This last hospitalization was screwed up because now every part of my body has been hit. With this diagnosis of encephalopothy has really played a number on me. I have severe pain in my head, i would not classify it as a headache, this is plain and simple..severe pain. Memory waxes and wanes. I've always been proud of my brain as its the one thing that got me far in life. I was an amazing, hard working motel/hotel manager. I got offers to move on to bigger chains frequently. I did my own P&L's, my own marketing. I would trouble shoot the property and with in a short time increase the occupancy rate by more than 50%. Now, I forget things at a drop of a hat, I have a hard time even typing or using the computer. This isn't fair, I would love to work, I enjoyed it..omg to think there are some lazy ass people out there that would rather stay home and collect and they are healthy, and some of us that really want to continue our carears just can't because of health reasons. I am so ready to throw in the towel. How much more can happen? Why is it always something new? I almost died in December twice, once with severe respiratory failure and then the massive internal hemmorage. Sometimes i wish it would have happened, and then other times I am thankful for another day. I used to enjoy life to its fullest, i'd work full time, go dancing with my husband, spend time with family and friends. Now its DRS, HOSPITALS,MEDS, PAIN, Pain and more pain. Lers not forget the constant blood work and weeking INR for my coumdin level. My eyesite also now is affected, one eye legally blind the other.well..who knows. Thanks for letting me vent, sorry so negative, just so sick and tired of being SICK AND TIRED>!!! This post took me since last night to write just because I keep losing my train of thought, andthen come back and do a little more..lol sorry so longgggggggggggg.

7 Replies

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  • Aww bless ur heart. You go girl u deserve too ! Scream shout do it all, it really helps . So much to deal with . I can really understand what you've been through & still going through. It's tough but ur a strong cookie you've survived it all. Keep striving don't through in the towel . Things are only going to get better believe me. Shout & bawl as much as you want it really helps .

    God Bless Hayley X

  • Hang on in there, it may not feel like it, but you've got spirit. xxx

  • That's part why we're here, no one to judge. God days and bad.x

  • Wow, you really have been through it! It seems so unfair that some people get so, so poorly whilst some people have it so mild. I know no-one would wish this on anyone but it's true that life is just sometimes really unfair. I'm glad you felt you could say all of that though, even if it did take a while and I hope it's helped in some way. I genuinely hope they're able to get your conditions and pain under control. Being in pain is so exhausting and specialists can get a bit blase about it.

  • Hi dar58,

    This is certainly a safe place that you can vent whenever you need to. Everybody in this community is very understanding and supportive.

    Loss of concentration and memory are common features of 'brain fog' which regularly occurs in people with lupus. You may be interested in our blog article on this topic from earlier in the year - lupusuk.org.uk/coping-with-...

  • Thank you all for your kind words of support and advice, that blog article Paul_Howard was spot on, but with the swelling and pressure I have from The encephalopathy makes it so much worse then my usual brain fog. Thank you, I do feel very safe here and yes actually somewhat relieved to be able to say everything that I needed to say to people that totally understand our daily struggles. Away from suppport groups like this, some tend to think we exagerate our illnesses, are lazy, are attention seekers, and some are just so sick of hearing it. This is why I nded to vent in a safe place. Thank you all again. Hugs to all of you.

  • You go girl! Give it the biffders! Shout, shout, let it all out! I believe a good vent can be the turning point when all seems too much. You tell it how it is, to understanding, nodding people here and that can give you a big sigh of relief. We know. We understand and we love and support you.

    I take my toupe off to you. You really are a strong and resourceful woman to keep getting hit by these waves and you are still on your surfboard battling through the foam. Goodonya Dar. You have to take a breath now and then. I hope feeling supported here helps for the next bit of wading out.

    My hat, toupe and dandruff salute you, courageous inspirational lady that you are. Please come visit often and keep us updated

    With love, respect and gentle hugs

    ⚽️

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