[Annie-Jean]

I have had lupus for 3 yrs now, and i have only just gotten over the stage where i thought it would go away.. I was put on planquinell, and started methrotrexate 6 months ago.
I feel stupid coming here to complain when i know so many of you are in a great deal more suffering than i am...My organs aren't giving out on me, and i know i am lucky. I have fatigue, which i usually find imposible to explain to people, but i guess you guys get it. I have improved..after not beeing able to bath myself i can now go out with friends.
But prior to lupus i could have been anything i wanted: i topped all of my classes and now i am having my second attempt at yr11 and all my friends are almost finnished school. Just beeing 17, i havent lived at all! and now i dont think i will ever do the things i wanted.
TOday i found my goal sheet that we completed in school before i got sick
I wanted to travel, to charity work overseas, become a doctor and settle down and have kids.
All these seem impossible now.

I am trying to do school from home, but i tend to over work myself and then get bed ridden again. If anyone has any advice, i am lost.

I think this is the first time i have ever accepted that i have to deal with this. And i do feel stupid..that i have been in denial for so damn long.

I feel selfish putting all this on a public forum. I have wonderful support from my mum, but she suffers more from this than i do, she is so worried about me so i try to keep strong for her.

i just read all of that and i am ususally not one to complain. I just feel so frozen, that my life is going no where. Everything i used to define myself with has been taken from me now. But i dont need pity, i dont deserve it from you people. I really admire many of you, for the way you cope and help others in these forums.

I need alot of help.
I need to stop being lazy! and everyone around me sees me and believes that i am disabled. BUt i have this dirty little secret, i could do more. I used to work untill i was shaking with exhaustion..but now i dont have the focus as i cant see my goals.

I need advice on when i need to tell friends, or how much to tell them. Friends that i met after getting sick. Particularly boys

I need to know any little hints about dealing with nausea, arthritus (i cant actually write anymore) FATIGUE! and motivation.

I need to know that there is hope.
And i need to appolagise for complaining so much.

Okay on a new note i have found some things that help and that i hope could do you some good as well.

-Vaseline for the nose sores...you actually shove it up your nose. When ever you need, i must do it about 10 times a day. I hardly have any now.

-Emu oil...i dont know where you will find it (i am in australia) but its great on the arthritus.

-Ginger for nausea. I find it helps with the methotrexate. You can find some nice teas. But i often just suck on a small piece when its bad.

Okay if anyone actually read this far thank you
I have had tears streaming down my face all the time while writting this, they have stopped now.

If anyone has any advice for me, please dont hesitate.

Thank you,
Annie-Jean

 

[dixy]

Hi Annie

soooooooo young to take this on. Ive been dx 3 years and am just coming to terms with it. Its like its happened to someone else so scary putting u life in the hands of the Doctors

You still have a future just a different one and perhaps better one.

Once the sle is controlled a bit and u stabelise.

Its hard I know u get fed up explaining stuff 2 friends.
Have u seen "the spoon theory" get your friends to google it.

Boys well its been so long lol. Just the same worries as any other 17yr old girl just b more choosy. Just do stuff to make your self happy the right boy will come along.

Yep u made me cry and 4 myself also we r here to support one another.

stuff will get better sending healing hugs
dixy

 

[LolaLola]

Annie Jean, Of course we will read to the end. First of all Welcome here and sorry you feel so bad. I have Lupus and so does my 18 year old. Like you there are things she has found she simply cannot do at the moment. For example she was learning to drive and had a Motability car but had to give up for now as she was just never well enough. She is doing a bit better now and is fortunate that her best friend has some health problems and they cope together. She is not in a relationship at the moment. Well for about the last year and a half to be honest-but then she is pretty fussy!

One thing she found that helps with the joint pain is Voltarol ointment, I don't know if you can get it in Aus. though.

Telling people about Lupus is always hard. Immi, my Daughter tends not to explain unless she has to. (She is much better at it these days)
I found that I need to be feeling happy and at peace in myself before I can talk to anyone about my illness. If you feel uncomfortable other people react badly and can really crush you.

These are just my thoughts for what they are worth. Things may be different for you of course.
One thing I can do is send you a big hug!
x Lola

 

[KarenM]

Hi Annie-Jean

oh bless you, I am 48 years old and I am crying tears with you. I tried to remember how I felt at 17 yrs, carefree in the main, no worries, it is such a lot for a young woman to take in.

I am new to my diagnosis of SLE, but have sort of had pre-warnings of such by my GP, so sort of had a good year and bit to digest it. I understand your wanting to protect you mum and friends, but unless you tell them for real how you are, it may make them worry more.

I found an amazing article just this morning within the groups, it is in the family, friends, carers section, The Spoon Theory, this may help close family and friends understand where you are coming from, if you dont have the strength to keep explaining.

Also I have found it absolutely essential to have an outside source of support by that someone not related who can take a balanced and neutral view, for me that is my GP, without him, I think I would sunk many months ago. I can tell him inner most fears that I dare not load onto family.

And of course support forums, I stumbled upon this one, and do feel I have struck gold, I feel comfortable enough to start posting straight away, I may not be experienced enough yet to offer much, but I can offer moral support.

It sounds as though you have come out of your denial process now, and that is a huge deal, and your to be congratulated I feel, as someone else has said, your life will still be wonderful, but probably in a different way.

For me I take it one day at a time, and try very hard to focus on what I can do, as opposed to what I cannot.

I am not a mother, so forgive me if my message is not young person friendly, I just wanted you to know I am so sorry things are so rough just now.

 

[oesa]

I'm so sorry to hear you are feeling so low Annie-Jean.

I was also 14 when I was diagnosed, (I'm 37 now), and I well remember how awful it was to be a teenager with a chronic illness. I was quite sick until my doctors figured out that they needed to stop messing around with low doses of this and that and just hit me hard with prednisone and Imuran (which was very experimental back in the '80s.) I remember (between the foggy bits) being really scared about the future, and depressed about just about everything (my appearance, my lack of ability to concentrate on schoolwork, my friends not understanding, giving up ballet and riding...) It was frankly awful, and back then I don't think in that doctors were quite as interested in the mental/emotional side of dealing chronic illness as they were about getting me though with my kidneys intact, so there was never any suggestion that I should see a counsellor about how I was coping.

But there is light at the end of the tunnel. My doctors were eventually able to induce a remission, and I went to university, spent a couple of summers doing development work in South America, worked in the mountains for a couple of years so I could do lots of skiing and hiking, and now have a career that I love and friends who understand that I really do turn into a pumpkin at 10pm so we need to see early movies! Kids haven't been in the cards for me (yet), but I've made peace with that if that doesn't happen.

But the first order of business was to get my disease under control, and it sounds like you're not quite there yet. All I can really say is try to be patient, and keep your goals in sight - it's certainly WAY to early to give up on any dreams! I was (and still am) a very stubborn person, and my doctors resigned themselves to the fact that I was going to make decisions they didn't always agree with, but they were there to help me manage my health, not to place limitations on me. I think the stubborn streak helped me plow through any obstacles - I just didn't choose to see them!

I also started seeing a counsellor in university, who helped me work through some of my fear and anxiety. It was really hard work, but very worthwhile in the end, so if you aren't seeing anyone, you might want to consider that.

A while ago I posted a list of things I've accomplished in the past few years to remind myself that even though I'm going through a rough patch right now, I have a lot to be proud of, and you will too!

I'll end now (could proabaly write a book, but I won't!), but I just wanted to say that I've been there and come through, and you will too. If you want to PM me, please feel free, I'd be happy to share what I've learned over the years or if you have specific questions about how I managed.

Feel better soon, sending hugs your way!

Lisa

 

[keebler]

Hi Annie-Jean,

Living with lupus is doable. I have found you need to listen to your body. When you feel exhausted you better go rest or take a nap. Pushing yourself threw that fatigue will only result with more pain.

Fatigued is hard to describe. I use a balloon, you blow it up and when all the air is left out of it, it is flat nothing there. That is how my body feels when fatigued comes along.(daily happening)

Getting diagnosed with lupus is a mix bag of emotions. It is like grieving process. Denial is one of those emotions.

Don't call yourself lazy. You are listening to your body when it cant go on. I use to work till I got it done too. Now I have to take breaks or do a little bit at a time.

You have found a wonderful web site here. We understand what you are going threw and how you are feeling. There is wonderful information on lupus here. The members are very caring and are willing to share their experiences dealing with lupus.

Give your mum some hugs. We mothers only want the best for our children. We like to fix everything wrong with our children. I am sure your mum is feeling really bad about all this.

You take care and it is nice to meet you.

Love,
Lyn

 

[onetay]

Annie-Jean,
Hi and welcome to the site. It is not about how bad someone is or how well they feel. It is about education and support when you need it most. It can be hard being your age and not be able to what kids your age do. We are here for you to talk to, complain to, ask questions, and also to just laugh til you cry. Chronic illnesses can take a toll on your body and you emotions, we all know this first hand. You are not alone here there are other here that are you age, some might be a little younger or older, but you will fit right in here.

I hope you feel better soon. Please join us in chat sometime you will find you are just like the rest of us.

 

[lis0803]

Hi Annie Jean,
I am writing as your post has pulled a nerve with me.
On being diegnosed with Lupus I felt exactly the same as you. I felt with Lupus that everybody else was zooming past whilst we are travelling in slow motion. I have had Lupus for 6 years and I would like to share with you that I have travelled overseas many a times there is a bit more to think of in the way of medications etc. this is a minor detail. The first time I did it my lupus flared (because I was so stressed that something would go wrong) and I was in a panic I think it was being away from my doctor etc. I saw my GP when I got back and he was quite relaxed about the whole thing and not suprised at all that this happened to me. So the moral to my babble is that at first things are hard difficuilt and you think Lupus holds you back. But determination counts for a lot when I was diagnosed my doctors my doctors told me I would only work 15 hours a week I was devestated as I wanting a career like yourself. I now work 50 hours a week some weeks, I've learnt to strike when the iron is hot and go whilst I am good and rest when I'm not.
The main thing that has helped me to learn along the way is to give in and rest when you are not well & just go with it. I waisted a lot of down time trying to push myself to quick too soon.

 

[donna kosk]

hello annie jean
you have come to the right place for a listening ear hey ive done some moaning on here but we all know what its like to have sle smiling on the outside and cry alone in the inside
but you still can have goals maybe just a little different dont give up on them or else you give in to the sle
a car needs petrol to go and we need energy to go
the best thing is a little more often but rest when when you need to refuel
boys mmm well if they like you they will like everything that goes with you so hope things get better for you and dont give in to loopy lupus



wishing you good health
donna