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Jaynie
05-08-2013, 11:36 PM
Hi.
I'm Jayne or jaynie if u so fancy. I've been I'll since I was 17 and I'm 40 this year. Posting on here is a big issue for me since I waited for a proper diagnosis forever and tho I can accept who I am I don't wear the lupus label with much grace! I'm looking forward to being in a space where I can admit all my stuff and talk freely about it with peeps who maybe 'get' where I'm coming from without worrying that people will think I'm just putting it on!
Beware...I'm a talker LOL!!

Xx

debbie-b
05-09-2013, 03:15 AM
Hi Jaynie,

Welcome to WHL.
Denial is a funny thing, it's the bodies defence mechanism. I don't wear the Lupus label with grace either, but I excepted it.
You have found the right place, where people know, where you are coming from, we do understand.
Btw, we love talkers.

Debbie

Jaynie
05-09-2013, 07:45 AM
Hi :)
Your reply made me cry...this is a big step to accepting that I'm ill. I go through phases (like most people do I imagine) of being able to ignore my symptoms or being completely overwhelmed by them. Denial is how I push myself, anything less than a struggle seems like a cop out, but I'm learning that I have a very skewed way of seeing things and that I'm not a 'bad' or 'lazy' person if I succumb (maybe i mean 'admit') to some bad times.
Thank you for the lovely welcome.
Jayniex

tgal
05-09-2013, 08:50 AM
Welcome to the WHL family!we are really glad to have you.

You are very normal. Dealing with a chronic illness is, in many ways, like dealing with a death. You go through the same stages of grief that you go through then. We all do it. There is no exact order or timetable but the steps are the same


Denial


Anger


Bargaining



Depression


Acceptance


Hope this helps a little

Jaynie
05-09-2013, 12:39 PM
Thanks! :)
It's odd, I've been I'll for so long and then in denial so long that this has come as a bit of a blow! You'd think I'd know better?! I started attending counselling sessions regularly since Christmas and am finally beginning to see that the way I have 'coped' has meant that my feelings physically and emotionally have been locked away. This is my first step and I'm looking forward to the freedom from all the restrictions I have placed on myself. Maybe with some of the stress removed I'll start physically feeling a little better.

Thanks for listening and replying!
Jayniex

Fel
05-10-2013, 04:25 AM
Hi there Jaynie,

I am also new to this forum but I totally get how you feel. Lupus is a horrible illness to have and to live with , as it effects not just you but your whole family! I am glad to hear you are attending counselling sessions as I wish id done that when I was diagnosed! You do tend to lock away your feelings and emotions when you have lupus and just a word of advise , lupus is worse when you are stressed and worried. It has gotten so bad for me that I went to a psychiatrist recently as it was effecting me so badly that my specialist said it was attacking my brain and that lupus can make a person psychotic ! you need to speak to people and just let it all out as I did when I joined today and be honest about what you are feeling as I think on this site people don't judge ! well I hope not !

you seem like you are in a bit of a depression at the moment , if I am mistaken then sorry ! didn't mean to put you in a spot that you are not !

hope to chat more and keep your head help high !

Fel

Jaynie
05-10-2013, 08:31 AM
Yeah Fel, I am. I survive by ignoring it and its all on top of me. I'm scared that once I admit the reality of it everything will be so much harder to face. The burden is so great because I lock it all up, stick out my chin and get on with it, but I don't know how else to be. I worry that people will think I'm putting it on, that I can't be bothered, that I'm lazy. I know it shouldn't matter what they think, but I have so little of a life sometimes that I take any criticism badly and crawl back into my hole certain that I'm a rubbish person.
I've got 5 children and a lovely husband, but other than my relationship with them I don't know who I am anymore or where my place is. You know that question "if a tree falls down and no-one is there to hear it, does it make a noise?"...my life feels a bit like that. If nobody sees me, do I exist anymore? Does it matter? I'm learning that I DO matter and that I'm still valid when I'm home feeling sick, but it's really challenging to accept that I still have value when all that I do is sit and wait for time to pass.
I haven't accepted being ill yet...keep waiting for it to pass and my life to begin. I've been ill 22 years tho and most of that without a diagnosis, some of that without a specialist because way back then the Dapsone (chemo drug?) made me so ill that 'they' decided all the treatment I could have was Prednisolone (English version of Prednisone I guess) and they refused to diagnose me because 'its a terrible disease'.
Sorry, I'm babbling! I'm having to change how I think and also accept lupus and stop waiting, start living!
There's a lot in this head right now. It's going to come out whether I want it to or not!
(You noticed that I'm struggling *feels nice*)

Jayniex

Fel
05-10-2013, 09:01 AM
Hey again Jaynie

you should never feel like a rubbish person or useless! I am just as bad as not being able to do everything right and be able to cook food for my family for weeks on end. Think we have had more take-a-ways then real home cooked food. I also feel the same way as am a house wife and when my husband and 2 kids don't have dinner for them ready I feel that they feel I am lazy too. Don't beat yourself up about it as you have a lupus , not just a common old cold ! We have to live with such pain and frustration everyday that sometimes we just don't know what to do anymore. it doesn't matter if it has taken you 4 years or 22 years , you are still a women in pain and you have a lot on your plate , especially having 5 children . If you go into the forum for new people you can read my post on lupus and mental status ! let me know if anything jumps out at you !

yes its easier said then done to start living and we try but we are no always successful. I can honestly say that I also have not dealt with it properly since being diagnosed nearly 4 years ago. but I lived in the UK for nearly 9 years before and the doctors there are crap ( excuse my language) I got nothing out of them . For years it was "you have carpel tunnel or you have something else .... this and that " ! Until we came back to South Africa and I was in hospital and one doctor walked in looked at my red butterfly rash and he is sure its lupus. As my joints were so sore I could not move them and swollen . he did tests and confirmed , so I had been living with it for year prior.

you hang in there and we can chat whenever you are up to it! stay strong and hopefully we can get you out of this struggle that you are currently in.

Fel

steve.b
05-10-2013, 09:08 PM
I would like to share a couple of threads that are on whl. I think they might be appropriate here. http://forum.wehavelupus.com/showthread.php?13048-are-you-enough http://forum.wehavelupus.com/showthread.php?13046-Self-Esteem-Skills-How-to-Stay-Upbeat-When-Dealing-with-Lupus

Sarahparr89
05-12-2013, 07:10 AM
Hi Jayne I understand how you must feel I have only just found out but seem to want to show everyone I'm ok but deep down I'm in a sad place. As of yet I don't fully understand lupus and am just in a lot of discomfort and tired. I joined this site because I hope that I can get help guidance and that people understand as we are all suffering in different ways Ndonly us understand. Hope to talk you again. Xx Sarah

Jaynie
05-12-2013, 01:46 PM
Hi Sarah
I know lots about lupus, living with it and coping with it...accepting it is my issue.
Sorry to hear you're poorly. People on here are lovely. I already feel welcomed and it's helping me to accept I have lupus...I didn't think that was possible!
Hugs and welcome!
Jx