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Blond-e
03-31-2005, 07:04 PM
Hello,

I'm new and looking for emotional support. I've had SLE since 1999 and it's been all up hill! I've recently found a good Rheumy, which helps a lot but he can't help me with the emotional issues I face with family, friends and low and behold, myself. I don't do well with Psychologists or Psychiatrists as I don't open up to them easily. I guess I have a shy, stubborn, proud streak to me. Not exactly good, but not a lot I can do about it either! :roll: I hope that I can vent a little and bounce a few things off you guys once in a while. I'd love to help any of you out too if I can!
Here's to getting to know all of you in time! :)

redmel
04-01-2005, 06:03 AM
:D :D

Hello there
I hope you are well today, just read your message.
I was diagnosed with Lupus in March 2000 so I am trying to come to terms with it It gets me so angry some days as I hate feeling so tired and inadequate.I have lost all my pride and self confidance.
I get very low some days and I can't imagine going on but then after a good cry and scream I am alot better,I do wish I didn't have to get so emotional but it's part of the darn illness.
I say to my family I would love just for one day to wake up and I don't ache or hurt, just one day to see what it is like I cannot remenber.
Then I feel really guilty because I am being treated and stabalised by medication and there are people suffering more and dying.But I think we have reason to have a moan now and again don't you.
I am 47 and live in England and I am married with 2 sons aged 25 and 14 wonderful boys.
I work full time as a telephone sales advisor for a photographic supplier so it is quite a stressful job.

I hope this finds you well and happy today
I'd love to hear back from you

Best regards from

Melody :)

Blond-e
04-04-2005, 11:15 PM
Hi Melody,

Thank you for your response to my post! Yes, I have to agree with you, I too, feel very tired and inadequate almost always. Some days I can't even make it out of bed. Those are the toughest days, emotionally. Then there are days that I make it out of bed, but stay in PJ's all day and don't get anything done around the house because I'm so tired, stiff and sore... those days are hard too. I must admit, I am truly "guilt-ridden" at times. I feel so guilty for not "doing the laundry" or "making dinner" or "vacuuming" etc. etc. etc. Sometimes it goes on for days that I don't do these things and I always feel like my husband is upset that he married me. Sad to say, but it's true, I feel this way. I guess it would help to talk with him about it but think I don't ever bring it up because I am truly afraid of what he would say!!! I have to keep telling myself that tomorrow will be better... sometimes it works. My outside face is very positive, on the inside though, I'm exhausted. People always say they admire how I've handled having a chronic illness and that they could never do it... but really, I'm not handling it like they think I am. I just continue to put on my outside face and be positive about it all when I'm with friends and family. Little do they know I'm withering away inside. Sheesh! I sound like a battered woman! I'm SO not!!!! Just a guilt-ridden Lupie!

Walk a mile... before you judge ... in my shoes. Is what I say to those who disregard Lupus as a debilitating illness. You're so right to say that we deserve to moan and groan once in a while! We feel pain everyday, why not add a little whine to that! LOL!

Thanks for listening to me vent. Look forward to hearing back from you!

redmel
04-05-2005, 12:35 PM
:smilecolros:

Hello lovely to hear from you.
I do hope you are having a good day.
I am shattered today as work has been very stressful.
My husband and son have gone to see the football game(soccer) we all support our local team Leicester City so I hope they win tonight it is 20.29 here at the moment.
I understand how you feel that you look ok on the outside but feel so awful inside I wish I could get people to feel how much pain I have all the time I really don't think people would beleive what we put up with everyday.
I will have to send you messages from work in the daytime.

Do take care and lets hope tomorrow is a good day
keep smiling

best wishes from Melody :D

Saysusie
04-05-2005, 06:43 PM
Hello and Welcome Melody and Blond-e:
You are both so right about "looking relatively healthy on the outside and being in total misery and pain on the inside". I think that this is one of the hardest things for us to overcome with this disease because so many people refuse to believe our constant pain since they cannot "see" it!!
I have said many times that for us, it is just as important to find help for our emotional issues as it is for our physical issues.
Blond-e...don't give up on trying to find a therapist, counselor, psychiatrist, psychologist, clergy, or friend to help you. Remember, we have to find one that fits us (just like a good pair of shoes) or else they will do us no good whatsoever. I truly believe that there is someone out there for each of us who needs help and support for our emotional well being. Keep trying until you find someone that makes you feel comfortable and safe...then you will find it easier to open up to them!!
I hope that you both are able to find support and understanding here. We are here to help you as much as we can and we are here to listen to you because we truly understand!!
Once Again....Welcome


:lol:
Saysusie

redmel
04-07-2005, 05:49 AM
:)

Hello there thank you so much for the lovely welcome.It is so nice talking and hearing from people who feel similar to me as I feel that non-Lupies haven't got a clue how awful we feel.


best wishes to all

from


Melody

val
04-10-2005, 04:21 PM
Hi all,
Sorry I haven't been around for a while learning to personalise gifs and set up a new site.
Hi Mel, hope you are ok.
It takes time to come to terms with Lupus, it took me 18 months to realise how ill I was and that I could no longer continue nursing.
its 2 years in may since I was diagnosed 20th. I remember it well. Now I am retired on ill health, starting new interests. I have started a local Lupus support Group==Melody I hope to see you there soon. I am writing poetry and making gifs
There is life after Lupus. I have got it but it hasn't got me.
If you ever want to chat my msn, yahoo and e mail is all in my signature

Val

redmel
04-11-2005, 03:49 AM
:)

Hi Val
I hope you are well good to hear from you.
You are working hard on your new sites.
Great work

take care

Love from Melodyxx

val
04-11-2005, 04:37 PM
Hi somebody added my yahoo addy but i clicked and may have lost you. Please try again, if you did add me then buzz me when you are on line.
Val

admin
04-12-2005, 11:07 PM
Welcome Blond-e