This is hard
Hey everyone.. Let me introduce myself... everyone calls me marv... so thats what i will go by here... im 26 and male.... and i was diagnosed with SLE 2 years ago... but have not had any kind of support since then.. It is hard because I am in a very small minority of individuals with lupus.. ( young and male).... I guess I just needed some other people who can understand what I'm going through to talk to... Thanks
Hello Marv, & welcome to WHL. I just started on this forum and already I fill like I'm able to talk to ppl that either have lupus or know someone that is living with lupus. As far as support Im sorry u haven't had any, but since u joined this forum, immediately U will have more support than u thought u could ever have. Also ppl are understanding and helpful. Living with lupus & being diagnosed @ a young age can be difficult too grasp but there is hope despite all the obstacles U face. One again welcome (*^_^*)
i guess what makes it difficult is that being so young, i have not fully grasped the idea of being chronically ill... In my mind I am still indestructable... like most guys my age think... but my body tells a different story... the aches and pains never end.. and the constant fatigue is very hard to deal with... and thanks for the welcome
Welcome!! I am sort of in the same boat as you, as far as being young and struggling with the reality of a chronic illness. I was diagnosed last year at 24 and one of the hardest things i still find is slowing down in my life to make sure i dont get sick again. I definitely feel it the next day after a hard night, so i've had to limit the number of hard nights these days!!
You'll find so many people around here that will give you all the support you could need!
Hey Marv (:
While I'm not dealing with being a male with Lupus, I am dealing with being young and living with a chronic illness - younger than you even. We have other members on our forum who are teenagers, trying to deal with all of this, and it's very hard. We also have some men here, too. Just no male young folks, hehe, sorry.
It's a hard battle, to beginning to accept all of this. That your life wont ever be exactly the same as it has been, or maybe as you dreamed it would be. (I'm sure you never dreamed of having a chronic illness, hehe). We're all here to talk and help you through. It's important that you get the support you need and deserve, because you do need and deserve it. And it is oh so helpful, especially in hard times.
So, anyhow, welcome to the forum. (: Feel free to join in on any conversations you'd like, and to talk, rant, let it all out, when you need to. We're here to listen and support you. We may not know exactly what it's like to be you, but we do know what it's like to be chronically ill, and that helps. The rest we make up for in hugs and laughter.
I too am a man with lupus-welcome to the fraternity!
I definetly understand the indestructible part-I'm 50 and still think/sometimes act like i'm still in high school. lol
It does take a while to understand your limitations and I have found in many ways now that I am diagnosed and under doctors regular care and have been taking meds regularly that I am doing much better.
Are you a chef ?-just curious
Yes Im a chef. Cooking is my passion in life. The fr=irst time i cooked a meal I fell in love with it and never looked back.. im also an up and coming pharmacist. I am currently waitin for a school to accept me and continue my education. One other little quick fact about me.. I do not live in the United states... I live in the Caribbean.
Originally Posted by n.mac
and as for Elo... no this is not exactly what i deam of or what i dreamt of when i was younger... In fact its wayyyyyyy offf.... Who ever is in charge of making a dream into reality really blew it this time lol....
Thanks for all the welcomes... already i fell 100x better thn i did lastnight.... im not alone anymore.. thanks
There are some guys on here and occasionally a few younger guys get on but only when they aren't feeling the best. I was diagnosed 2 years ago when I was 16. Being young and sick sucks. Your not alone =) This is a wonderful place and I feel like everyone here understands and they are always there for you when you need them.
Hi and welcome to WHL! I know that this is difficult to have to deal with at any age but, for a young person, it must be even harder. The only thing that I want to say is that your life isn't over. Changed yes. Over no.
If you get a chance talk to Rob. He is a male with Lupus and, like you, thought his life and dreams were over. He couldn't fly anymore and he had to close his company down. I know those were very difficult things to do. So, wanna know what he did? He changed the dream and now is racing cars!! Try not to be discouraged.
Dreams change but they don't have to die.
Welcome to our WHL family! We are so glad to have you and I look forward to getting to know you better
I understand!! I was only 23 when I was diagnosed and although Im not male... I more or less lived the life of a male LOL I had a motor bike, I went out on overnight fishing trips, camping and hiking and hanging out with the guys...
as time has gone on... I have lost so much of that. I had to sell my beloved motorbike which I built from scratch : (
I dont go on overnight fishing trips anymore
Camping and hiking is difficult, but I still do it when I can
And I lost a good portion of my friends who shouldnt have to slow down their lives for me.
I wanted to have a career in the armed forces, that was no longer a reality. Now I feel like I am everything I once dreaded... basically a house wife lol
I guess what you might learn from people on here... especially lovely Linda... is that you need to find ways to love the life you live. Find things you can do that give you a thrill for life still. Mine is playing computer games, playing warhammer, fishing covered from head to toe for a few hours instead of days in a row in a bikini LOL and since I had to give up my motor bike... some kind fellas have taken me out for rides on the back of their bikes : )
But I do understand... toning down is really hard. And I still very strongly feel my need for adventure and freedom. I still havent worked out how to get around that, I still just feel a longing to be healthy. Let me know if you find out how to get around it! lol