Support ?

[Briggsy]

How are you just supposed to ring someone and tell them that your hurting feel utterly rubbish totally unmotivated and depressed because the brave face you always wear tells a different story and they all think your so strong and independent that they would would never imagine that you can't stop crying and your really struggling.

[mogie]

O briggsy, yes it is crap. You sound desolate, do you not have anyone to talk to, family or friends, that you can be truthful to about how you are feeling? You cannot be brave all of the time, it is OK to say "lupus is unfair and I feel rotten" I am sure that we all do it at times. I hope you can find someone to talk and offload to and you feel better soon. I fyou have no one close to you, then please think about asking for some extra support.

[Briggsy]

My family think poping in for tea every week is a help and I do have some good friends but with young families and their own problems to deal with. It's the unpredictability of it that gets me missing things your looking forward to leaving jobs till tomorrow because your hurting only to feel worse tomorrow. I just don't know how you come to terms with the fact that this is how it's going to be, this is your life.

[Purpletop]

I agree with you, the unpredictability is the worst feature of this illness and I can't explain it to my family either because they take for granted that tomorrow they will be healthy, while we don't know what else tomorrow will bring. But you will get to the point that you will be so fed up of being scared that you'll just close that anxiety off somewhere in a corner of your mind and get on with it, you'll see.

[sandwiches]

Today i am not having a good day. I have no one to talk to because everyone thinks because i have had a transplant all is well. But today i feel really depressed and i can't tell any one. I have no family except 1 brother who is only interested in himself. There are days that i wish i wasn't here, but i try and pull myself together. I just have to get on with things. I hope i haven't made you depressed. Lupus unlocked is a big help to me.

[brave]

I feel every word you have written;((( i think eventually we will learn to care less at other peoples input toward our condition ,lets face it unless your in that posistion you never understand what it feels like ,i often say ......imagine the worst flu with added extras and somone saying you have to carry on with your life,some just look at me and others just say mmmmmm!i think im coming to accept that disease is a very lonely process ,however im learning the important people in my life ,theres not many ;(((

[mogie]

Briggsy, I hope that today you are not feeling quite so bad? Ironically today is a crap day for me! I ache all over, I have vertigo like I am a drunk, my head is pounding and I feel like I have been run over by a bus (and look like it too). I don't know if you ever learn to accept or come to terms with lupus, any good day however is a bonus. The hardest part as you say, is that usually people, including family don't quite know how to help or understand. Are you able to get out much? On a good day, I try and get out (even though this cold weather is a nightmare with the Raynauds!) but I find it lifts my spirits. As my old departed dad used to say "Try and keep your chin up, even if your backside is trailing on the pavement" and he had 2 heart attacks and 3 strokes, but I know it is hard to be positive when you feel so bad.

[caninecrazy]

hello briggsy, i can totally relate to how you are feeling as can many other members on this site. we are all here for you,you are not alone. please just off load to us we never mind. lupus is a complex sh*t to live with and we all put on our brave faces but there are times when we want to scream and tell lupus to sod off! i know i do, you are welcome to message me anytime. i too dont like to talk to my family about how im feeling as i dont want them to feel im a burden and my friends have slowly disapeared as i became poorly. hugs to you x