Asking for help

When you are feeling overwhelmed with life (which is generally the way of life and a chronic disease) support from friends and family is so important. 
Even though they can only sympathize and empathize with us, encouraging thoughts and random moments of "Hey, I know you're struggling" go a long way.
Looking back, my support system has traveled this twisted journey with me every aching step of it.
My family, friends, coworkers all have come to learn as much as I have along the way. I don't know how I would get by otherwise.

The key is communication.

If they don't know how bad you are feeling they don't know how to help you. This was a difficult process for me to learn. I prefer to be self sufficient.  I don't like to ask for help. When there are days that you need help with everything from drying your hair to disabled parking, your self esteem takes some pretty hard knocks.
Asking for help is frustrating at first, but don't be defeated. Bring some ease into the conversation. It doesn't always have to be about what you can't do. Simply stating, I can do X today but I will need help with Y next, can subconsciously alleviate the pressure of asking for help.

I am lucky because my husband helps me a lot! He carries in the groceries because I need extra time to maneuver the stairs. I put away the groceries as he brings them in. We both take action, that's our system. My hands are good some days and horrible the next. I can not expect hubby to know how to help me if I don't express to him- Hey I'm having a bad day. Simple as that. He then knows not to rush me and I need some help. Hubby asks are we using "princess parking" today? (On days that I am moving well I don't use my handicapped parking..someone else may need it more than me). Of course, some days it just visible in my limited movement.

So, my suggestion is set up your code. Find your terminology that works for you and your support system. Otherwise you take a chance of knocking yourself down mentally and physically. So, Arthur is in a bad mood today. My hands are yelling at me today. When you have established that yes, in fact, help is necessary then think of it on your terms. You may not be able to accomplish everything as you did before but you can still be productive in other ways. Plus, having your own code can help lift your spirits and keep you from feeling like a weakling.

Please know I've had those lower than low times, when the pain is bad and I couldn't even imagine how I could possible make it another day. Days that I pace, and lay down, and pace and cry. I promised from the beginning not all "hearts and flowers" in this blog. Just understand, that every day won't be as excrutiating as the last. The heck of it all is, some days I don't know if I can dress myself, and some days I don't want any help at all. The important thing is to keep trying, because tomorrow might be a better day. And when you have a "good day" take it and RUN (metaphorically speaking). Drop everything else and enjoy your good day.
Your support system can be there for you if you allow them to help. Its okay to ask for help. And if you aren't up for talking about it go to your code.
And I will tell you, I've had pain brain all day and I don't like Arthur very much today either.