It’s 3am. I can’t sleep even though I took the Nyquil. This is becasue I am in terrible pain and have been up crying. I woke up with my knees throbbing and swollen. My husband is so caring and loving when I wake him up due to my pain. He has never, ever, ever been angry or complained the next day. He wakes up and holds me, consoles me. I have the most wonderful husband. This night, I can not keep him awake, so I walk to the living room, my legs ready to crumble beneath me, searing pain in both knee joints. All due to my deire to get back healthy faster than my body is ready to do.
I have been feeling really good lately. So good , in fact, that I recalled my previous state of health and I remembered my muscles as being very fit and active. I have started to work out. I’m trying to get stronger to go back to beloved career. I know everybody tells me to wait several more months, take it slow, but I have been feeling very well lately!! But….. I am also reminded that it has been a little less than a month since starting all the medication I am on. It was just a mere 4 weeks ago, my poor husband would hold me when the Evil Visitors woudl arrive each night at 7pm.
I started exercising, gently of course, 2 weeks ago, walking 1/4 mile, daily stretches, 5 minutes on the tredmill, 5 minutes on the eliptical machine. I was so out of breath in only 5 minutes on the eliptical machine a few days ago. I almost started sobbing at how quickly I tired. But, I talked to myelf, reassuring myslef that I will get strong. I just kept saying to myself , “C’mon, you can do it one more minute, keep going” . And I built up to 15 minutes!
I started to feel really healthy, so today, like an dummy, I jogged 1 1/2 miles then did weights, then jump roped!! I felt like super-woman!!! And I felt fine during the day. I thought to myself, “See!! All you have to do is be very, very disciplined and keep going!!” But, instead of feeling better, I woke up with excruciating pain at 2am in both knees and my quadriceps.
Lying in bed, I kept my knees bent in bed to try to releive some of the pain, but it did not help. My knees throbbed and my knee-caps feel very hot. I got up, felt so shaky as I walked to the medicine cabinet to get some pain releiver, feeling like my legs were going to give out, the burning pain in my knees making me cry.
What a fool I am!!!! I do not have the muscles yet to go gung-ho like a madwoman yet!! Just because I used to run 4 miles, then jump rope for 30 minutes, then do eleptical for 30 minutes and then do weights, I do not have that stamina yet. The recovery process is so slow. I need to go slower.
I cried in pain for an hour. I layed on the couch holding my swollen knees, rubbing the heat I felt coming from the knee-caps that had them so swollen. I massaged my quadraceps, feeling foolish that I attempted to push my body so hard. It is my pride that makes me want to jump back into my old routine. It is my desire to not let this disease keep me down. I need to realize that the healing process, the process to re-build muscle and strength can take months, sometimes a year. I know Still’s is lurking just below the surface of the water, just waiting for me to miss a dose of medication, to slip up so that it can sieze my body again. I will not let it. I still recall the hallucination of the small devil in the hospital room with teh pitch fork, so angry, jumping up and down trying to get at me. I was not afraid because the angels I saw circling around my bed, spreading their wings to shield my from the devil’s view. Strange, how the mind envisions things when we are so ill.
I pray for common sense to slow down and take this time to come back to my previous health within good time. There is no rushing the bod’y natural process. And my fear is a relapse that would surely kill me.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.