Sjögrens Disease is one of the most misunderstood diseases. We suffer in silence because the illness is invisible to the eye, but painfully present in the body. I always have the dry eyes, dry mouth, dry skin, dry everything and now I’m really getting hit lately with the nerve pain, joint pain and all the daily discomforts that are so real, but others can’t see them.
Sometimes I feel like such a burden because when I start to express my pain, I feel like I’m complaining. I never know if I should voice when my body hurts or to ask for help because most of the times it’s for small things – like opening a jar or a Ziplock bag!
And for the bigger things, I feel so guilty asking for help. I have such a wonderful husband and kids that I know would help if I needed them to, but I feel guilty because while I would love to get stuff done, I also don’t want to put myself in more pain, and everyone has their own life to live and are doing their own thing and I don’t want them feeling bad to say no.
In my mind I have always been a warrior, taking care of everything myself, and the feeling of burdening anyone makes me cringe. I have cried when I can’t move, but I have to just keep trying to do things by myself, to be normal, because if I am suddenly alone . . . well that would not be good.
I have to keep telling myself that my new normal is different now, and that is ok. I want to be my old normal, thinking I could still do it all – but then that thought comes crashing back to me when I can’t do it all. It is so frustrating!
I can do things yesterday, today and maybe tomorrow with no problems, but there are no guarantees that I will even be able to move tomorrow, or sometimes in the next hour.
My new “normal” is now “management” and the management involved can be tiring! As a wife, Mom, Grandmother, caregiver, friend, etc, we are all great at showing compassion to everyone else, while being the worst at giving grace and compassion to myself.
I am learning to “manage” this disease, without stretching myself too thin, not getting overwhelmed (whatever I am working on will still be there tomorrow) and just making it through the day. Since learning to manage – I do have more better days than not, I am a survivor!