But you don't look sick

The hardest part of this all is everyone thinking that cuz I look normal I feel normal. There are days that I wake up and have all the energy in the world and the best intentions to accomplish a lot! But there are also days that I wake up feeling completely drained and just want to stay in bed all day. How do you explain to someone that even though you look good you don't feel good?

I don't really have an answer to the above question. I wish I did it's just hard to make someone understand who thinks you are just being difficult. 

Trust me I would love to open my eyes and feel amazing. Some days I feel like I could hop right out of bed but then I am quickly reminded that I really can't do that. 

I really do appreciate everyone and their valiant efforts to try and get me out more and out of my bedroom! The thing is though when I say I cannot do something it's because I cannot or I don't feel comfortable doing so. 

I always feel strange when asked how I am doing. I typically respond with "ok" since that's the middle of the road answer. Unless we are close I'm probably not going to tell you I'm having a horrible day and that my stomach kills and if hurts to walk 5 feet. Although I think if I told that to someone they wouldn't believe me anyway. People are so strange. 

I am usually an upfront person but I feel very out of my element when asked why I'm in a wheelchair by a stranger. And I get especially awkward if I cannot wheel away. I guess I just don't want to tell my life story to some person I don't know. I mean if we are friends and you genuinely want to know I will. 

I know some people in the Cidp group love telling their story to strangers. I guess I just like to get out and forget my troubles for awhile. I like to pretend I'm not sick when I'm with friends. 

Most of my friends are amazing at this and taking my mind of things and for that I am extremely grateful! 

anyhow I'm not entirely sure where I was going with this but basically it's frustrating when people think since you look good you feel good. 

I am hoping that in the next few months I can get more comfortable with the stairs. That seems to be the main thing holding me back right now. If I could get a grip on doing stairs I think that would open up a lot more opportunities for me. 

It seems like something so simple but they really are quite challenging when your knees don't want to cooperate. 

Every night while scooting up them I think it would be easier to do an army crawl but since I can't feel my feet that is kinda out of the question. 

I try and picture how as a kid I whole have done things and I'm pretty sure then I wasn't paranoid about falling so there's that. 

So my Goal by the end of March is to do the 16 stairs at least once. With help of course since I don't want to tumble down  16 stairs lol. 

Start small and realistic with goals is what I've always been told. That way you won't be disappointed. 

However my larger goal is for June as id love to be less wheel chair dependent by my birthday. I mean I know I may still need it for long distances but I'm hoping my legs will be stronger by then and I will have better balance. 

I wanted to go to Disney or HP world to celebrate this year but that was before I saw that tickets were like $180 dollars! 

That seems a bit extreme for a one day pass. How do people afford to take their children here? I don't think I could afford it. Well I honestly can't afford it now either . And I'm just one person. 

It makes me sad that I don't have a vacation planned this year but I feel like so much is up in the air still with my health to really plan anything. Especially since I need special accommodations for showering etc. But then I think to myself that other disabled people go on vacation so I'm sure there's places with those accommodations right? So many things I think about during my days home alone. 

I can't even begin to think about a vacation anywhere until I find out what is going to happen with my SS disability. 

I have enough miles for a trip to Michigan if I decide to go this summer but I will also need spending money etc. 

Although if I am still not drinking I will be quite the cheap date! 

Going the first weekend in March to have my liver enzymes checked again and I'm really hoping by then they will be back to normal! Although I still will probably avoid alcohol as it is probably the reason I am having issues to begin with and since I am terrible with avoiding sugar like I was told to I probably should keep avoiding liquid calories. 

So for now I will be day dreaming of having a normal vacation with my friends and family and hopefully come summer I will actually get there! 

Xo