View Full Version : OW..this is soo annoying!!

06-02-2009, 09:19 AM
Right heres the thing!

I went to hospital 2 weeks ago my mum took me, in the car we chatted like always, anyway she said to me that i need some sort of direction in life atm, as im not doing much with my life, ok so i took on board what she said, but dint want the convo at the time as other things on my mind.

So last week i went to my mum and dads (another hosp app) i wanted to show my dad a few things so went upstairs to his office...i dont really get the chance to talk with him properly as he is still writting his first book...so we ended up having a good chat about life etc, until he bought up about me not having any direction in life, he told me that i do what i like when i like as im not working! he said to me that when summin fun comes along i do it yet when summin boring i dont...god i was soo annoyed! i told him for the record this was not the case, ive let alot of ppl down recently and i dont always do what i want to do either, if im not well or OBV flaring im not likely to go anywhere, im lucky the friends i have in my life atm understand i cant always do what everyone else does, and they are patient and understanding i was lucky not to completely loose any of them...after explaining my cans and cants, Anyway even if so happens to be a hosp day same thing applies..and im usually good with keeping appointments, but if i dont think its worth it im not gonna bother, So he went on to explain about the fact i said i would do a sign language course (which was well before i met Norma aka stoney) so kinda strange she come into my life, I told him shes teaching me to sign, and i dont think im doing too badly...il let stoney be the judge of that one!

So no dad!...i dont choose what i want to do or not, he keeps saying to me im letting LUPUS run my life......i keep explaining im not letting it run my life, im trying to work with it as much as i can....BUT sometimes the LUPUS gets the better of me, for crying out loud i would love for him to live a day of my life and see how he copes with it! i dont live with him anymore so he must see what he wants to, which is proberly what he is doing.

Anyway ramble over
Ya think ya family there to support you..............ER NAH!


tiggerlishus - Heidi
06-02-2009, 09:44 AM
ahh babe
sorry to hear you having rough time with family i know it don't help much but i'm sure we all get that from one member of family or another i know i have had my sahre of it know we're always here for you know matter what!! as i like to say rto say i'm like no nails once i stick theres no getting read of me!!!:nana:
you know your body and you know what you can and can't do don't let them stress you out as it will just make you flare even worse just know you got us !!:thumbs-up:

:049: rock on dude xxx

06-02-2009, 09:44 AM
re the signing yeah u r doing really well, i was really touched when u told me u had been looking up more signs on internet as know ur having a tough time of it lately with lupus. im sure ur dad is there 4 u but being a bloke (sorry guys) isnt expressing himself right. maybe u could write it down for him what u r going through..maybe even like a diary of a typical day so he can understand better of what u r going thro. and whatever happens u have got family that r there 4 u and love u 2 bits...me, mj, joe and shane. i cant pretend i know whats it like (even tho i am doing my best to learn) no more than u will ever know what it is like to b deaf but we r there 4 u and will support u no matter what. mj has taken the same chemo as u so prob knows a bit of how u feel (he is kicking me up bum right now by the way literally and smiling about it lol). i know it gets 2 u when u have to cancel things and u dont do it lightly but u have sat down and talked to me about it, am wondering if u have had chance to do that with ur dad as u said hes been busy. all our love norma, mj, joe and shane xxx

06-02-2009, 09:45 AM
isdm, Sorry your parents don't listen to how you feel. I find that no one understands why I do or don't do certain things anymore. They think I'm wasting my life away. Sometime I feel like I'm wasting my life too. I'm so glad I come here because I find that others with lupus understand and go though the same things. I'm so glad you have Norma. She is so understanding. You two have so much fun together on facebook.

tiggerlishus - Heidi
06-02-2009, 09:48 AM
oh ps the signing your doing alot betterr than me still looks likes gobldy gook to me!! love ya mate xx

06-02-2009, 11:23 AM
hey isdm,

so sorry to hear about your parents. i am wondering if you dad is just worried about you, and is afraid of your disease and what your future might be like. I wonder if he is upset because he feels helpless and knows he can't help. I wonder if he is worried about what will happen to you when he is no longer around. Sounds like he wants you to push yourself, in order that you will be able to take care of yourself when he can't.

i don't know if any of these "wonders" are accurate, just trying to think outside of the box and look at this from another angle.

so glad that you have all of us plus heidi, stoney, mj, and shane....you are blessed with many friends.....and that says a lot about you.

keep up the great work with sign language....just another dimension of who you are.

06-02-2009, 12:01 PM
Thank you mountain, ure words men alot to me.

Yes dad knows ive sat him down several times and told him how it is
my last chance is the lupus retreat at the end of this month, they are both coming with me, so we will all see!

cheers again guys

06-02-2009, 02:51 PM
what is a lupus retreat?

tiggerlishus - Heidi
06-02-2009, 02:53 PM
it is something going on in england not sure she is on here but on facebook you can find it martine has set up a weekend for peopel suffering from lupus and thier families alittle get together with people going through the same thing its happening end of june and boy janey and i are well looking forward to it!!! x

06-02-2009, 08:15 PM
sounds like an excellent idea....wish there was something like that here on this side of the big water. A place for family and lupies to share stories and to learn from each other.....i hope you all have 100% success and have fun sharing time with each other.

tiggerlishus - Heidi
06-03-2009, 12:56 AM
yer i'm sure it will be great and i know for fact knowing me and janey there will pleanty of photos!!!
just wish we coudl take the world and thier father maybe someothers would be bit more understanding!! hope every one is having a good day xxx