ACCEPTANCE & POSITIVITY

I have been mulling over this disease that I have and while still not quite excepting of it I have succumbed to the fact that it is a part of me now and will also define me. I am still very much who I was before this hit me but with a twist. I was born with medical issues and had challenges all my life so why not this too!

I visit and talk with my doctors more than I do my family members and friends now. My social life is in the clinics and ER and what is really scary is people know me by name! I really don't get out much because I never feel well (not the normal person's "I don't feel well" either) and I'm afraid I'm going to fall out in public, I've had that happen once before.

I have been trying to think about ways that this incurable illness has been good for me, which is really hard to do. So here we go...

1) I have made some incredible friends and even though we can't hang out in the normal sense of "Hanging out" we share our illness, sadness, pains and small victories together.

2) I have a few family members & friends that I have had for many many moons that are very supportive and I don't know what I would do without them. With their help I have managed to pay some bills, do laundry and get much needed essentials (Toilet paper 💩)

3) Learning new words like "Spoonies", "Rheumy", what SARDS stands for, and so much more. My vocabulary has grown in ways I didn't think was possible and who says you can't teach an old dog new tricks! LOL!

4) Even though it makes me feel horrible at times because I feel like I should be doing more to contribute to the household "I LOVE NAPPING"! I don't need an excuse anymore to do it because when my body says "STOP IT" I have to listen or it will make me pay for it later.

5) I have never been one to like "dressing up", clothes are so restrictive and uncomfortable. Now I can wear comfy things and not feel horrible about it and if someone doesn't like it, to bad! Which reminds me, I NEED MORE LOUNGE PANTS & HOODIES 😊

That is all I can think of right now off the top of my head. I know most people think that it must me nice to not have to do anything all day but what you do not understand is that I have to "FIGHT" my own body everyday all day, 24/7 365 and there is no end to it. There is no remission for me, only a glimpse of relief once in awhile before the ugly monster rears it's ugly head again.

I am also doing my very best to work from home, some days I can't, some days I can only work an hour or two and some days I can complete a whole 4-5 hour shift. I take the small victories when I can get them and live to fight another day on the days I don't.

I have no idea what my future holds for me and that is ok, it will be a surprise everyday. Sometimes good and sometimes bad, can not have one without the other. I will do my best, that is all I can commit to.