Sometimes it frustrates me that people who have the same diseases I have are doing better than me. I’m not jealous of them, I don’t want anyone to be sick. It just gets to me that some people can have serious diseases and are able to function so well. For example, I know a friend of a friend, who was sick for a while; joint pain, feeling like crap, etc. In fact she goes to the same Rheumatology group that I do. She was diagnosed with Lupus like me, put on Plaquenil, and then just resumed her life. She is fine! She is working! She owns a condominium!
Why, when I got Lupus, did it disable me to the point where I could not work any more and my life is such a mess because of it? Why have I never gotten better?
Then there are those people who have more serious conditions than I, have more diseases than me and they still are doing okay in this world! They are working! They are working out!
Sometimes when I am getting my monthly I.V. of Orencia, I sit next to people who are getting Orencia or Remicade and they talk about their work, one of whom is a police officer. One time I was sitting next to a woman who had to be around 80 and she was telling me how she lives alone and has her routines and goes about doing this and that. And I wanted to say How, how are you able to do this? You are eighty-freaking-years-old and I am forty! Why can’t I just get my monthly infusion and go on with my life?
My questions and rants are mainly rhetorical. I was diagnosed with Ulcerative Colitis when I was 16 and with Costochondritis in my early 20s. Rheumatoid Arthritis came in 2003 with Fibromyalgia to follow a couple of years later. I worked with my RA for five years and it wasn’t easy. For the first year and a half of my RA, my feet were so swollen I had to ice them about five times a day. I brought my ice packs to work, I brought my ice packs on business trips. I sometimes took up to eight Percocets a day to get me through work. I sometimes would throw up in the morning and then just go to work.
So, I guess you can’t say I haven’t given it the old college try. When Lupus came, I just never seemed to recover and other conditions followed. I know I am sick, know I can’t work, know I can’t do normal mommy things…I just wonder how they can.
But I’d be lying to you if I told you that I am 100% positive about all of this.
There is a tiny part of me that sometimes thinks maybe I’m lazier than these other people, maybe they just WANT IT more than I do, or maybe I’m just simply crazy.
Confession: I do know that I used to be one of those other people who had diseases and were working and having babies and going out to dinner and I used to look at people like me now and thought, “I just WANT IT more than they do! I am triumphing over my illnesses! They have given up!”
And now, the only thing I do know is that for some reason, I no longer…can’t.
I think the same things. Then I start to beat up on myself with thinking it must be because I haven’t tried harder. It’s hard not to wish things had turned out differently.
I could have written this, it is so close to my story and my feelings. Know you are not the only one who feels this way….apparently we have both “lost it”!
Wow.
Wow. Heavy, beautiful, true stuff, Emma. Wish my blog were ready so I could share it.
I have felt all of those things, except never the one about wanting it more. I think I’ve been pretty deeply sidelined ever since my first diagnosis 15 years ago.
At the same time, I have experienced healing of stuff in my body that isn’t supposed to heal, according to the docs. I am getting stronger. I am doing more. I know I don’t want it more than anyone else. Or at least, I have no way of knowing what’s in anyone else’s head or heart. I just am grateful that I’m feeling better.
It IS so strange that some people with lupus or other dxes like mine are out there working, while I create my own work from home that honors my needs for rest breaks and self-care. I am happy for them. I wish I had more energy to give the world, too. I hope they’re really enjoying feeling good. (and yeah, I envy them.)
And I used to wonder if there’s more I could do…until now, when I’m doing so much it is overwhelming. But this is YOUR blog…
So I’ll end by saying you are courageous. You are doing the best you can. You are inspiring the rest of us. You are giving us permission to feel and to live this odd, awkward journey with chronic illness and all the feelings it brings up.
Thank you for you!
Juliana
I think I understand what you are saying. I do in fact still work, I care for 2 under 2 year olds whilst their parents work. I have fibro, RA, Sjogren’s and maybe lupus. I feel very unwell and extremely tired, and I know that I cant carry on forever. I too see elderly people in the street who can walk much faster than me!! I feel stupid!! you cant worry about what others do, we all do our best. Some cope better than others, for some the meds work better than others, thats life!!! Thank you for sharing this with us, it makes me realise its not just me that feels like crap all the time!! I had a steroid shot on Fri 6th and was told to rest for the weekend. I did my best, but we have families, and they need us too. Anyhow, keep blogging, we need you x x x
My heart goes out to you and everyone in your position. I’m guessing depression sets in after a while and exacerbates things for a lot of people, too. I’ll say a special prayer for you tonight, my friend…
.-= Mrs4444´s last blog ..In the Caution Zone =-.
home insurance 58370 life insurance 39063 buy car insurance online =-[[ health insurance 063