[liss_666]

:sad:hey, well ive ad lupus for 10 years now was one of the youngest in the uk 2 get it at that time and its been a **** of a long time since i been on here and so much has changed lol i think i was 16 last time i came on and now im 20!
well my lifes been a rollercoster ive taken my self off all tablets and was so much better the depression stoped i didnt have a rash i could moove freely and i was my self again he weight droped off and i was happy.......untill last christmas...... my hand have strted peeling and they are red and burning and bleeding and ive been in and out of hospital for treatmet and the doctors dont know what it is bu itsso painfull i carnt touch anything wen its bad and ive been so depressed lately and thinkin really nasty things to do to my self and ivecutmy self off from all of my friends :shrug: because i feel like they do understand anymore i feel like i get on there nerves wen i say im in pain n carnt go out or im too tired :sad:
i dont even know wh im writing on here again am only moaning to new people lol but i suppose it helped me last time when i nearly took my life and thts what im affraid of agin i think im falling into the old habbits of my youth!
i think my doctor has passed it tho and he just wants me to take this tablet n that but he dosent see that im much better without them my blood test are nearly normal and have been for 5 years now he only realised i asnt takeing my tablet wen i told him this year lol .
:umm:i just dont know wot to do anymore i carnt cope at work because of my hands and im getting in trouble for breaking down crying and saying things to people i shouldnt and would not normally say!!
anyway ive rambled on long enough lol so ill shut up :lol:
feel like im looseing my mind :wacko:
take care god bless
liss xxx

 

[elainepink]

Hi Liss
Well first and foremost please dont do anything about taking your life - and i do know what i am talking about and where you are emotionally because i was there too. What u r feeling is a rational response to being chronically ill. I too want to go out on the town, meet people dance the night away but just dont have the energy. BUT i do go out - even when the world is dark and grey i paint on a smile arm myself with tissues and put on an oscar performance and u know what - it cheers me up!
Stick with the meds just because u have not had a flare doesnt mean it is gone away - it is more difficult to control a flare than to prevent it.
As for depression - that is normal - u r not alone. Did u talk to anyone last time? is there anyone u can talk to now?
U got through this before and u will again - u r strong...
If u r still on line please respond and let me know u r ok and if u want to chat then i am here for u...
x e

 

[confused1]

Dear Liss, hang on dear girl. You're young and life has a way of changing just when you think it can't. In your lifetime, I believe with all my heart that a cure will be found for this autoimmune nonsense. In the meantime your life is important and you have so much value to the world. Think of all the things you can contribute.

I know you hurt now. Pain is depressing and the fact that it doesn't let up makes it so much worse. I understand, believe me. I have terrible pain in my face. My husband can't touch my face anymore. Some days it hurts to have the wind blow my hair. But then there are other days when the wind is sweet and the trees beautiful and a friend says something that touches my heart. Life is good and well worth sticking with, even through the pain.

Sweetie, you must find someone to talk to. A therapist. I don't know where you are, but almost everywhere you can find low cost or even free therapy. If you are in crisis, I'm certain your community has a crisis line and you must call it before you even consider hurting yourself. One pill that might help you through this is an antidepressant. Not only will it help you feel better emotionally, it often is good for pain as well.

If your doctor isn't doing the t rick, isn't listening to you or helping you, find another. And make sure you can talk to the doctor. Tell him/her that you are considering harming yourself. That gets them moving rather quickly, believe me.

Above all, don't give up. Stay with us, come chat, come vent --- it's ok to rave and rant here. We all do it. Maybe you and I could have a whine contest! :lol: I'm a champion whiner and I bet I could teach you a trick or two. :hehe: Seriously -- please don't give up. Please seek out help. And if work is too much then you may need to take short term disability. Or long term. It's ok, you have value even if you never earn another penny in your life.

Please liss, let us hear from you every single day. Twice a day. Just tell us everything. Tell us about you... what you like and the things that you think about and what you like to read. Write tomes and volumes here. If you can't type, there are programs you can get on your computer to let you talk and then it will type for you.

Just don't drift away. Don't give in to despair. Life is a precious gift, even when it hurts. You don't know how long this flare will last. Perhaps it will be very short and soon you will be back to "normal". I will hope and pray that to be so. But don't give up. You are loved and cared about and you have friends here who will always be here for you.

Hugs,
Sunny

 

[Salopsally]

Hi Liss,
Fantastic advice from Sunny. Please let us help you to feel better by just listening to you. You are so young. x My Dad used to say.. Keep smiling.. you never know what tomorrow will bring. It is so true but until you are a bit older you probably wont know that too much.
Youve done really well getting off the tablets but you still have Lupus so maybe from time to time you will need the odd bout of medication just to help things along.
Your probably more of an expert on Lupus than I am as Ive not long been diagnosed but Im sure if you continue posting on here you will find lots of friends who know exactly how you are feeling. Friends in the 'real world' that dont have Lupus do have trouble understanding. Here everyone is in a similar situation one way or another so they understand so well.
Youve got a great support network here so please use it.
Maybe mention to your doctor how low you feel because perhaps a short course of antidepressants will help to lift your mood and give you the strength to cope with things.
My daughter is 25 and about 3 years ago she felt like you too. Hers was due to bullying but shes had some antidepressants and some councelling and is now a changed girl.
Try to keep in touch with maybe just one close friend and family that Im sure love you. Think how awful they would feel if they lost you. Its ok to lean on friends and family in times of need. There will always be a time in the future when you can repay the favour.
Hope to hear from you again soon.
Luv Sal xx

 

[sjink]

Dear Liss

I am one of the newbies you are moaning to... and I don't mind at all. I have been moaning a bit myself lately so you are not alone. It is very strong of you to come here and ask for support and absolutely the right thing to do. Coping with this illness alone and without medication is a very hard thing to do and sometimes you need to reach out to someone and say "help" which is what you have done.

There is lots of support here for you. I would suggest you turn to this group when you feel really low and they will help to keep you going. And try to keep up the lupus meds, I gave up steroids last year as I was desperate to get off them but am facing the fact that I was better on them, able to go out and do things other people did. My blood tests were close to normal but I felt like @!%@@ to be honest but kept trying to fight through it and ended up worse off and really depressed. I got very irritable and snappy too with people and I am not normally like that.

I remember being really ill as a teenager and lying in bed whilst friends went out and about without me. And that was in the days when there was no real treatment for illnesses like lupus so all I could do was rest rest rest in between hospital appts that got nowhere. The new meds can make an ordinary life possible now. Maybe you should think about taking them again for a bit, it won't be forever.

If it is any consolation I have never been that ill since and have had some absolutely normal and brilliant years. Lupus has not wrecked my life or stopped me doing things when you look at the bigger picture, it has just brought some bad patches now and then.

I do know how sad it must be making you feel but please, please remember we are here for you. Lupus changes from day to day and month to month and year to year. And as someone else said the treatments are getting better all the time.

Hold out your hand for support, try to catch a spark of hope because there is one. Know that there are people here rooting for you and wanting to help you get better.

Sally's advice to get some time off work seems like a good idea to me. Give yourself a little time to heal.

Well... we are here for you,
Let us know you are Ok will you, cos we all care.
Love
Sara

 

[cad]

Hi Liss,
i can't type very well today and had so much to say to you.
I think everyones advice is really good.
I also think coming here will really help you to just get things off your chest and atleat feel a bit less alone with things.
I know its hard but please try to stay pro active and keep fighting.
also try and make time to take care of you and spoil youself a bit.
Maybe it would be good to get sighned off of work for a bit to try and pick youself up a bit.

I truly wish you all the best and hope things start looking up fo you soon.

Take care

Cassie :there:

 

[Parkesy]

Hi liss, I've found this board is great for having a good old moan & getting everything off your chest, god knows it helps me, Im only 21 myself & completely understand what you mean with ur friends cos I have days like that & all i do is have friends come over n we'll sit, tlk watch a few movies n chill out n ave fun in the comfort of my own home, tht way i kno if i do get xceptionally tired i can jus go bed n crash.

& as everyone else has said although you havent had a flare as yet you never know when one will come.

Keep your head up & if you need to rant, rave n let off sme steam Im sure evryone on this forum understands that evry1 needs to do tht from time to time & we all understand and are here for you

 

[liss_666]

thankyou sooooo much guys!!!

hey, well just finished work and pulled my back the other day and 2day and last night ive been in aggony ...good thing...(carnt feel the pain from my hands ha ha ) thanksyou all for all your love and support ive just cryed my eyes out reading all of them and feel a little better
i would lovetime off work but i work for tescos and they dont really understand about illnesses and things ive had 6 weeks off in the past 2 years and if i have at least one more day off they will sack me lol.
just been reading an old post i posted when i was 18 and i sound so happy on it i forgot all those bad things happened to me!well i remember the bullying because it made me have a eating dissorder in the end but thats sorted now thank god lol ... eat as normal now!!! wahooo (taken me 4 years but got there!)
i know i just need to hang on and things will get better it just seems black at the end of the tunnel atm and carnt see a way out (like last time lol).
My hospital here is *%@^ they havent got a clue really im at dianna princess of wales hospital and its more for my joints than lupus i just wish there was more testing on it and more knowlage about it because im sick of people thinking im lieing when i tell them what i have and if there was more tests maybe there might oneday b a cure!!
i do think i need to see someone but i dont have that much money to pay so im off to docs next week (takes me a wek to see him he tht bizi) but he really really good been my doc since i was born !and im going to see if he can sort something out hopefully!
feeling a little better 2day apart from my back lol even tho ive had bad thoughts dont worrie guys i wont ever try and take my life again like he last 2 times lol i just wonder sometimes!!
thankyou all again for replying means the wold to me even people who found it hard to type like i do i understand and know how much pain it causes but u still replyed!!!:hehe:
im glad ive come back onhere again i forgot how much it helped and how much support i got last time i should have known to come back on here ages ago.
thanks again everyone ill try and post every day if not everyother day!
god bless take care
love n stuff
liss
xxxxx

 

[Salopsally]

Hi Liss,
Great to see you back on here. You poor thing working with the bad back and the painful hands. Im sure they wouldnt be able to sack you when you are genuinely ill. Not sure how you go about it though as Ive been self employed for years and forget how difficult it is in the workplace.
Lets hope your nice doctor can help you a bit. My goodness so many people dont even bother to work when they are quite fit. You are doing great to keep going like you do.
Sounds like youve been through a lot so you are entitled to feel a bit down now and again just try not to let it get hold of you too much. Ask for help.
Glad youve remembered what great support this is. Keep coming here. Im sure it will help you lots.

Luv Sal x

 

[Surferboy]

Hey Liss, I'm a total newbie on here (having joined just today).

I don't want to say too much as most of it has already been said.

But what I do want to say is, sometimes, it's great to just stop doing what you are doing. Stop thinking what you are thinking. Just stop. And then take a look at all the beauty that surrounds us all. Everyday. Things which you would never even consider as beautiful. Then think about what you are prepared to do to enjoy and lap up all that beauty

 

[sjink]

Hi Liss
So pleased you replied, been thinking about you on and off all day.
If you want a second opinion from a lupus specialist you are entitled to it, I am pretty sure, on the National Health Service. You don't have to pay. The thing to do is find the best lupie rheumy you can that is near enough for you to travel to and ask your doc to refer you. I phoned my local Lupus UK contact person and talked it through with them as I didn't like the first specialist.

Can't help much with the employers though. Maybe you should tell your doc about your fears about being off work and losing your job. Or citizens advice. If you have been working somewhere for two years or more I think it is not very easy to be sacked for being off because of sickness, especially if you have all the covering notes. Someone else here may know more.

Keep positive
Love, Sara xxxx

 

[greenhaggis]

Liss,

Glad youre in a better place!

Take care and post more!

Love Lesley