I don’t know how many of you have an autoimmune disease, but the ones that do, know exactly what my title means. The amount of energy it takes to do anything at all is enormous, and it will take us days to recover.
Most of the time I find myself falling asleep if I sit down for any length of time. I don’t do it on purpose, my body just shuts down. I have learned to listen to my body, because when I don’t, I end up in the hospital.
My husband has been my rock. He is simply amazing. He does the laundry, washes the dishes, runs the sweeper and other numerous things. He knows that I simply can not do these things anymore. I do little things like dust, fold the towels and other small things. I don’t know how many times he has rescued me from myself. (Found me doing things that will disable me for days and stopped me.)
I have gotten a new rheumatologist that I saw a few weeks ago. My old rheumatologist and I didn’t see eye to eye on many things. One of which was pain. I have Gouty Arthritis (osteoarthritis, fibromyalgia, degenerative disc disease) which is extremely painful and when I am in a flair, my joints swell up with Uric Acid Crystals which you can actually feel through my skin. My new rheumatologist is wonderful. We are working together on a pain management plan that I am more than willing to try. So far…so good.
I am not writing this to complain. I am writing to inform others how people with an autoimmune disease feel. It is an invisible disease. You can’t see anything wrong with us, but trust me, there is plenty wrong. So when you hear someone say that they have an autoimmune disease, don’t downplay it and whatever you do, don’t offer any advice unless you have an autoimmune disease too…cause you just don’t know.
I have RLS (Restless leg Syndrome). I have had it for about 4 years and lately the medication has kind of quit working. Tonight was particularly bad. I am going to call my doctor on Monday, but until then, do any of you have any pointers as to what I might try? I would be ever so grateful to get a good nights sleep on occasion.
I have tried drinking dill pickle juice, tonic water with quinine, hot showers, icy hot, ice packs and tylenol to name just a few things, and nothing is even beginning to cut it this time. My calves are at the stage of cramping up and are very painful. I have even tried walking with my cane around the apartment. The only thing walking does is to aggravate my back. So I stop walking for a while.
I am not usually one to complain about my physical problems, and I am sorry for that, but I sincerely hope that someone out there can give me a suggestion or two.
Thank you all so much for putting up with my little rant. I really need some relief and some sleep.
It’s 3:47 A.M. and I’ve been up for a while. It’s not unusual for me to be woken up by pain. It usually happens every night. I have to get up and take more pain medication. My legs are on fire. I have degenerative disc disease, fibromyalgia, gouty arthritis, osteoarthritis. I could go on and on, but I won’t. I am not in the habit of complaining about my pain, it is what it is. I deal with it the best I can.
What I was going to tell you is that there are several ways that you can learn to live with chronic pain. For me, it was finding something to do that took my mind off of the pain, to at least lessen the pain so that I could function. Crochet was that something for me. It helps me to deal with the overwhelming pain that I feel. Sometimes my house smells of Icy Hot so much that it is overwhelming for a while. I was lucky enough to find a pair of compression gloves that help my fingers and wrists. I am able to type better now and there is less pain. I have my lift chair and my extra large heating pad hooked up and oh boy the relief that I get for a while feels so good. I meant to tell you that I now have 14 blankets made for my comfort bags. I’ll take a photo of them soon and post it. After I get done here, I will go to my chair and start on number 15. I bought 30 bags and if I can get 30 blankets done then that would be fantastic. I would like to get them done by November 1st if I can, so whatever the amount of blankets I can manage will have to do. All I need are the stuffed animals. I have a feeling that I need not worry. I will manage to get what I need.
My medication is starting to work, so I think rather than crochet, I will go back to my bed and get some more sleep. It was nice talking to you all. I hope to see you soon.
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