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It would be nice if other people would be sympathetic but you can imagine how it is for family members when you start to change. They don't know what to think or how this will afect them. And,its an invisible illness. Trying to convince them you are sick just wears you out.
I learned this the hard way but maybe this could help you. When you are sick, you need to conserve your energy for yourself. I wore myself out in the beginning trying to convince everyone else I was sick and trying to show that i wasn't "lazy" by doing things even when my body was screaming at me to stop. I had to leave and get an apartment by myself and I ended up spending most of the next 2 years in bed. And, they weren't anymore sympathetic when I was more sick than they were when it first started.
When I finally realized that i was the only one who knew how I felt, I realized that I had to respect my own perceptions. I started to notice what activities or scheduling made me have more flare ups and when I had some relief. I started telling people what i could and could not do without a lot of explanation. I also made it clear that I had to choose carefully between activities. I would say I can either go to the movies with you saturday or the Celtic Festival on Sunday but I can't do both and that means I will not want to schedule anything for a few days before and the week after. This way I can tell people what I can do instead of what i can't and give them a choice.
I eventually got back together with my husband and after a few years began being able to be up out of bed more than down. He is pretty understanding about the fibro limitations(he is a low energy person) but he still is negative in other aspects and I have had to learn to be stronger in myself to deal with that. I wouldn't suggest to other people to expose themselves to negativity but after, initially, crumpling, I am more able to say "oh, well" when he behaves badly. During this time I also have attended counseling and gone to a psychiatrist to treat my mental health problems. The ADD meds helped a good bit in my case.
You will need to examine your priorities. I got so sick that i let go of everything. When I started to feel better I thought carefully about every activity I chose to add to my life. Now, I spend much of my time doing quiet things that I like to do. there are probably things you do and things you take care of that aren't necessary.
I had to make an agreement with my husband about the minimum acceptable amount of housework i would do. When I am having more pain I ask him to do specific things like carry the laundry downstairs of the cat litter up. . When I am feeling better I do more. He likes me to spend time with him so I try to work my resting and working so that i am available on weekends (to do quiet things)and at night.
I have been diagnosed but there are many conditions that seem very similar. I often tell people that it doesn't really matter if I do or don't have fibro because I have all of these symptoms and I hurt and I am tired and it isn't normal. That's where you have to get. You have to know what your status is and what you can and cannot do.
When I am having trouble getting stuff around the house done, which is often, I use the TV as a timer. I get up during the commercials and do some dishes, wipe the sink or scoop a litter. If that's too much its every other commercial. If you don't watch TV, use a timer. You would be surprised at what you can do in little 5 minute periods of time. When I was first sick I had to do 5 minutes every hour.
When I get up in the morning, I make the bed and prop up some pillows. In between activities, I lay propped up on the bed. This lets my muscles relax much better than they can sitting up. I give my mind a break by reading or doing word puzzles, etc.
I am so sorry that you have to go through this. I know that so many people on this site understand the pain and heartache you are facing right now. Other people with chronic conditions usually understand so much more. And, you can talk to them about symptoms that healthy people don't want to hear about.
I am home a lot but when I go out, I really feel for people who can't stay home. I am usually too hot, there are odors, and just sitting can be torture. I always have eye drops, nose drops, acetaminophen, uristat, my inhaler, acid reducer and extra doses of mental health meds. Even the fun activities are a major effort. I have to go out some because its good for my mental health and my marriage to get out of the house but its never fun for my body. I have passed up several trips.
There are a lot of things you can do resting. Word puzzles, laptop surfing, all kinds of crafts or artwork, reading for instruction and for pleasure. You can take these activities outside on a blanket or lounge chair. Cat cuddling is always good.
I get disability which is a help so that I am not completely dependent on my husband.
My mom still doesn't believe I am sick. She got Lyme disease and she was reading to me all the symptoms and telling me that I could not imagine how awful it was. She got antibiotics and got better.
It is a journey but its not the end. I now think I have it pretty good. But, when I explain to a "healthy" person all my symptoms, they look so horrified that I find myself saying its not that bad. I guess i am so used to adapting that I don't always think of myself as sick even though I never really feel good. Its all relative.
Even though you want to get well, accept for now that you feel this way and try to deal with what is happening now. A lot of energy can go into thinking that this isn't happening instead of dealing with the present. If your health improves or clears up that will be great but so for now what you need to do for now.
I guess I have rambled on here. Try to be as nice to yourself as you would be to a sick child. If you treat yourself well, then when someone is not good to you, you can think, at least I am glad I was nice to myself today.
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