Please read...this says exactly how we all feel!!!
This was sent to me from Solesinger. It sums up exactly how I feel and I'm sure how many others feel
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.
My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.
My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.
My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,
I have shared these thoughts with many "Lupies", as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine -- Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
Catlaldy, and SoleSinger - thank you.
This moved me almost to tears - how clearly stated and how real! I don't think I've ever heard a better way to express that danged brain fog... or how the pain and fatigue shift and come and go.
I'm going to print this, and I'm going to give copies to those I care about, those who care for me.. . Like the Spoon Theory, it says so much in so little space.
Many gentle hugs - for the gentle ones are the ones we need!
No problem...I just wanted to share this with everyone as it says exactly what I feel. I just wish those who don't understand this disease could spend an hour in my body when I'm having a flare.
I am a "newbie" and I want to thank you for your words of wisdom. I have spent so many years in a state of deteriation by thankfully I finally have a diagnosis. Now I can focus on how to handle my disease.
I thank you for your words--they say it all.
Thank you so much for posting this. I spend most of my time online at LupusOhio and someone else there read it and suggested that the rest of us check it out. Very insightful and helpful.
Can anyone provide me with information of a live Lupus chatroom? My daughter (Lupus also) said there used to be some good ones but it is like they have all disappeared. :?: :?:
I would love to be able to "chat" with any of you rather than just trying to post replies.
Thank you all so much--your words provide much comfort when I am feeling scared and alone. It would also be great to find someone else dealing with Tumid Lupus as it is such a mystery.