Sticky Blood-Hughes Syndrome Support
8,090 members8,329 posts

Thank you for this community

I just came on quickly to tell everyone thank you for all your replies to my last post, and for always being here for everyone. I am struggling badly with depression at the loss of losing more independence. This is the part of this ilness I cannot seem to get by. I have been doing mostly just sleeping and shutting myself from the world. Here, we can depend on our APS family for words of encouragement, whereas in our home lives there isn't much of that. I posted on my Facebook page how much I am hurting and devastated with all that has been lost due to constantly going through some flare or another.(Hoping for some support from friends and family members) My 2 children and their spouses all said they are right by me all the time. I have many friends on facebook, many are cousins or friends I grew up with, or friends throughout the years. I know many have seen it, as they have spoken to one another but none of them say anything to me. They post pics of themselves and their families enjoying life, being active etc, I and my children at one time was able to join in with them, but since 2000 when my life started to fall apart there weren't anymore invites. I know it sounds like I am jealous and maybe I am. But i'm human and have deep feelings. Please keep me in your thoughts and prayers. I will come on when I feel like I can handle the depression better. Thank you again, Darlene

4 Replies

Sorry things re still currently tough, I know you are having an awful lot of testing and tons going on, but please do keep an eye on your Thyroid, vit D, B12 and iron. Make sure your doctor keeps an eye on these levels, as an out of kilter thyroid (common with Hughes Syndrome/APS will add to making you feel down, as will other low levels, I hope you care is good, all the best to you. MaryF


Thanks Darlene

We are thinking of you and praying.



Awe Darlene I'm so sorry! Been IM you and havnt heard ! I must gov't our fb page!!! Sometimes I become Dori wen it comes to computers and never thought to look at ur page! We r friends right on fb??? I've been worried and about to call you landline! The last I heard was u and hubby going to breakfast!


I dont know you but feel your pain through your words.

People can be so blind to another humans distress.As long as they are good they get swept up with the happy crowd but forget about others in the background who are suffering... if you get my own children get so wrapped up with their own lives and now I can't look after the grandchildren for them they forget about me til I nearly have to beg for closeness by coming over for a meal.

why are people so ignorant of others.

Everybody on here just ring a friend or loved one today to brighten their day and don't leave them suffering in the darkness of dispare.


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