Luke,

It is essential that you get out of the house, even if you enjoy being alone and staying home.

I very much enjoy living alone but getting out allows me to better enjoy my own space without becoming detached from reality, lonely or depressed when this disease forces me to remain home.

Engaging with people in my community, with friends, co-workers and family on a regular basis ensures that I have access to their support when I need it. We help each other out as we are able. When I am well, I help others who need assistance and that enriches my life, giving purpose and pleasure to it.

Doing that also takes my mind off of my own challenges for a while and that is so important for psychological and emotional well being. I really think that we are forced to spend time thinking about our own situations because of this disease, so thinking and doing things for the benefit of others provides relief.

It is a true blessing to assist others in any way that opportunities allow because it benefits others as well as those who engage in it. Without that, it is all too easy to lock one's self away in seclusion and descend into a state of self pity and hopeless despair.

You might think about joining a support group in your area that holds regular meetings, so that you can attend them. There you might meet others with similar interests, who also understand the challenges that you face, so that you can engage in them together.

This disease should not limit our abilities to expand our consciousness, nor will it if we continue to dream, set goals and pursue them as we are able.

I wish you opportunities in abundance and the will to do just that.

With love, Erika

Ali is my hero. When she was 12, she always amazed me how strong and wise she was. She is my own kids' (boy/girl twins) ages so I keep tabs on her and them when possible (Ali rarely now, like only now). I used to be on Facebook (an account I deactivated long ago) but admit when I was a "Facebook Stalker", I looked at Ali's and my kids' FB to look at their lives. Friends, boy/girl friends, breakups.And I always told my students (emotionally Disturbed) I had an invisible sign up on the wall LIFE IS NOT FAIR. It isn't

Aw thanks Kicker, you've just fetched tears to my eyes.

You're right, life isn't fair but I figured without this illness, I wouldn't be the person I am today. It made me have to grow up far quicker than I wanted to but its also gave me so many valuable life experiences and made me appreciate small things much more than I probably would have if I wasn't ill. Its made life tough and relationships a lot harder (recently come out of a three and half year relationship), friends don't understand and even some family members walked out on me when I never thought they would and when I needed them the most but I guess its made me who I am today.

I'm 18 now, soon to be 19. Seems a long time ago when I was that scared 12 year old who felt like life was going to end, I've definitely come a long way since then.

Thanks for your support. its you guys here that helped me accept life for how it is, good and bad.


Luke,

I know you probably think people are lecturing you to go out but it isn't the case. We all want what is best for you. I know first hand how lonely it can get being ill, especially at a young age (i'm guessing your young from your posts?). Please try and make the best of life while you can. I'm like you, I like my own company but too much of it and I become depressed. I spend half of my time in the house and half out, when i'm up to it. During the week I try and save myself for the weekend to go to cinema or shopping with friends. I sometimes go clubbing although this is more difficult due to standing issues. Its hard and I do have to pay the price for having fun but its definitely worth it. If you ever want someone to talk to, who understands how hard it can be to motivate yourself i'm here.

Ali,
So happy to hear from you!! You've taught all of us so much about how to deal with the hand we're dealt. It isn't always easy; some may leave us, and some of us who have very strong support feel guilty about how our illness is burdening them...
Luke, I've been hiding in my house a lot lately also...usually due to the fact that the unpredictability of my symptoms makes it easier to hide in the house.
But when I do get out, especially when i connect with friends or when I get involved in helping others out, I feel SO much better...
It's difficult to break out of the box we make of our lives...but break out we must. One of my favorite sayings is that life gives you lemons...so make lemonade.
Hope you can get some assistance with everything...and this is such a great place for advice and support...
Take care...

Well a little update on me. Started dieting and exercising this past Saturday. I haven't really ate any bad foods, and I've been either walking or raking the yard. I was sore this morning, but I feel better now. I was denied disability this past Saturday as well, which I'll be doing an appeal with my lawyer. I'm just not sure what to make of this because I think if I can lose some weight, and get stronger, I can just go find a job and make my own money. That's probably the best thing anyways. I want to try and lose a lot of weight by the end of the year. I weight 265 now, and need to get to 200 at least.

And Luke wants to thank everyone for their support..

Getting out.

I like how you are starting to become proactive in your life. I am glad you are open to hearing another's perspective.

I do have a suggestion. It may or may not be a good one for you.

Is there a local animal shelter? Perhaps you can volunteer there with the goal of becoming one of their dog walkers. Dogs give love unconditionally. They don't care how you look, what you say. They just love. I can imagine how truly happy any dog would be to get out of their cage and smell the great outdoors.

It could be the new you, walking then learning to run and giving dogs the chance to stretch.

You would realize how much you are needed. And it might take you outside your own head, even for just a moment. Even on the days when the pain is huge, it might be just what the dog needed, a pet and company.

It could be just what you need too. Rain or shine, you could be out there making their world better and in the process, enriching your own.

Yeah I hate statements like that