I've been meaning to recap my weekends here, but not exactly consistent with it.  

I'd like to show my interests, things we do around the city, etc.  

Just because I have a disability doesn't mean life stops, and though I mainly speak about my personal limitations here- it doesn't mean HIBM is the only thing I'm interested in.  

I think sometimes people think because you have a disability you're not interested in other things, or more so can't be.

I think this is not out of meaness, but perhaps  because many have not experienced those with limitations within their social or work circle, so when they see one they automatically think their world is limited. And when they see someone disabled out in the world or accomplished they stop, pause and wonder how that is.  

Then they congratulate the disabled for challenging the world not built for them. Limitation is only in the mind's eye and able bodied are not exempt from limiting themselves.

This weekend was not exciting, however, since I spent most of it recovering.  I hate staying in bed.  I've had the flu since last Thursday. It started Wednesday evening and then escalated mid Thursday morning. I was home alone, so Pippi was my only caretaker until Jason got home.  She saw how pathetic I was and curled up right under my chin.  

Who is taking care of who?  

I'm told I barely got sick as a kid. While most kids had pink eye, colds, strep throat, flu I somehow managed to avoid these. I guess I was saving up for the big one...HIBM.  It was only a couple years ago that I got the flu for the first time and oddly right after my very first flu shot.  It may be a lowered immune system due to HIBM, not sure, but I have a harder time fighting them off.  

I was working at my desk when it hit me and so I dragged myself to bed.  Feeling incredibly weak and outrageously freezing with hot/cold sweats, I covered myself in whatever I could find and hoped I wouldn't need to go to the bathroom until Jason got home.  I didn't think I'd be able to walk and get myself there in time.

By nature I'm always very very very cold.  My legs and feet are unbelievable, like frozen ice blocks.  If you sleep next to me you might feel like necrophiliac ;).  I feel bad for Jason when my legs get that way. Another HIBM patient told me that is because I don't have insulation because of the depleting muscles.  Makes sense.  It's not the kind of atrophy where you can visually see the muscle loss in the limbs-exposing the bones underneath. My legs and arms look normal. If you felt them, though, you wouldn't feel much muscle in them. Just hanging skin where the muscle used to be. Otherwise, I'm pleasantly plump ;).  

I have an illustration idea to show my frozen feet, depleting muscles and increasingly saggy skin.  I've wrote it down for when I have time to draw it out.  I have a long list of those.  Daily, I think of 4-5 illustrations that explain my experience and sometimes I wish I could work full-time on them. 

Not feeling much better today and still weak, congested, freezing and sore throat.  Not able to do much today, just shuffling around the house with my pockets stuffed with tissues, heating pad wrapped around me, sipping on Nyquil, hair pushed back and wearing a housecoat with a ratty old tshirt over it. Sound hot? Yea. I try.  

I use a wheelchair when I'm outside, but not in the house.  I keep myself walking while I'm in the house. Not ready to be a full-time wheelchair user quite yet. Besides, once I do then other issues arise like how do I get up and down to go to the bathroom.  Unfortunately, my arms are too weak for transferring and I definitely can't get out of it by myself. I probably could with some creative thinking, but it is not a bad idea to hold on to what walking I can.

So, here I am at the desk attempting to do some work. Not an excitiing update, but I'll have something better next time.