Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
We all have some tricks that help us get through the days, and we\'ve found out what can make us feel worse. Let\'s trade some ideas.
Food, suppliments, drugs, environment, family, counciling, anything.
I\'ll start by telling you about the hardest thing I\'ve ever done and why. When first I became ill I went to all of the Dr.s that I could find to help me (I lived in Gainesville, Fl. Home of Shands Teaching Hospital, Alachua General Hospital and North Florida Regional Medical Center, 3 of the LARGEST hospitals and RESEARCH centers in the S.E. U.S.). I thought, \"no matter how exotic this illness may be, I\'m in the best hands here\". Well, no one could find anything wrong. I was so tired that I couldn\'t eat or even drink for a long time. Too long. A friend found me in convulsions on the floor of my bedroom and they took me to the hospital. Dr.s told me that my kidneys failed due to my \"Anorexia\". Well, I went home and got ready to die. I got some friends together to get rid of everything in my home that my boyfried didn\'t want, and that I would not need within my one weeks alotted time. I told EVERYONE that \"Needed\" my help to go get someone else, I couldn\'t do it. God Bless me but that HURT. I LIKED MY things, and my biggest point of pride was my willingness to help those around me. Well, I laid down and waited, but instead of Dying, I felt Stronger! Was this even possible? Yes! When I got better enough to do any thing at all, I started taking an active role in my own care. I got all of my own medical records out of the hospitals, and I did my own research. I found a lot of things to help me, and many more that hurt.
The first thing that helped was getting rid of everything that took energy to take care of and didn\'t give enough good back. This included Clothing (I kept 3 daily shirts, 3 pair jeans, 1 dress, and 1 suit), nik-naks (Kept None), Pictures (Kept One of each person I Love), Jewelry (I kept my three favorite pieces), All my cosmetics and perfumes, even most of my scented soaps (I kept 1 all-purpose liquid for EVERYTHING). Well, almost everything went. I cried the whole time that I was getting rid of stuff, and telling my familly and my friends that I couldn\'t help them any more hurt. Well, as much as it hurt then, IT WAS WORTH IT!!! I Survived, and I Got Stronger, There was Less Pain, I had More Energy.
If it might help, try to go through one drawer or if you are strong enough maybe one closet. Get rid of every thing that you don\'t NEED.
I have a book that might help with deciding what can go what to keep. When I find the information I\'ll pass the information along.
Say NO once a day. No, I\'m not strong enough to help you do that. No, I Won\'t do drugs today. No, I won\'t fight you today. No, I don\'t have to be \"Perfect\".
Say YES once a day. Yes, I Will eat well today. Yes, I will talk to a friend today. Yes, I Can Rest with out guilt or shame. Most important : YES, I AM A GOOD PERSON even though I have made some (or many) screwed up decisions, I AM A GOOD PERSON.
Food, suppliments, drugs, environment, family, counciling, anything.
I\'ll start by telling you about the hardest thing I\'ve ever done and why. When first I became ill I went to all of the Dr.s that I could find to help me (I lived in Gainesville, Fl. Home of Shands Teaching Hospital, Alachua General Hospital and North Florida Regional Medical Center, 3 of the LARGEST hospitals and RESEARCH centers in the S.E. U.S.). I thought, \"no matter how exotic this illness may be, I\'m in the best hands here\". Well, no one could find anything wrong. I was so tired that I couldn\'t eat or even drink for a long time. Too long. A friend found me in convulsions on the floor of my bedroom and they took me to the hospital. Dr.s told me that my kidneys failed due to my \"Anorexia\". Well, I went home and got ready to die. I got some friends together to get rid of everything in my home that my boyfried didn\'t want, and that I would not need within my one weeks alotted time. I told EVERYONE that \"Needed\" my help to go get someone else, I couldn\'t do it. God Bless me but that HURT. I LIKED MY things, and my biggest point of pride was my willingness to help those around me. Well, I laid down and waited, but instead of Dying, I felt Stronger! Was this even possible? Yes! When I got better enough to do any thing at all, I started taking an active role in my own care. I got all of my own medical records out of the hospitals, and I did my own research. I found a lot of things to help me, and many more that hurt.
The first thing that helped was getting rid of everything that took energy to take care of and didn\'t give enough good back. This included Clothing (I kept 3 daily shirts, 3 pair jeans, 1 dress, and 1 suit), nik-naks (Kept None), Pictures (Kept One of each person I Love), Jewelry (I kept my three favorite pieces), All my cosmetics and perfumes, even most of my scented soaps (I kept 1 all-purpose liquid for EVERYTHING). Well, almost everything went. I cried the whole time that I was getting rid of stuff, and telling my familly and my friends that I couldn\'t help them any more hurt. Well, as much as it hurt then, IT WAS WORTH IT!!! I Survived, and I Got Stronger, There was Less Pain, I had More Energy.
If it might help, try to go through one drawer or if you are strong enough maybe one closet. Get rid of every thing that you don\'t NEED.
I have a book that might help with deciding what can go what to keep. When I find the information I\'ll pass the information along.
Say NO once a day. No, I\'m not strong enough to help you do that. No, I Won\'t do drugs today. No, I won\'t fight you today. No, I don\'t have to be \"Perfect\".
Say YES once a day. Yes, I Will eat well today. Yes, I will talk to a friend today. Yes, I Can Rest with out guilt or shame. Most important : YES, I AM A GOOD PERSON even though I have made some (or many) screwed up decisions, I AM A GOOD PERSON.
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Hi all! This is for those of you that have or have had the same neurologist for 4 years or more. I have been with mine now since 2009. He is one of the best movement disorder secialists in the midwest. I know he is extremely busy on the lecture circuit now and in fact not taking new patients there is a huge waiting list for him. BUT.... I feel like my visits are not what they use to be. He...
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
Try to keep positive, keep singing, if that works for you. Remember to pray. Please stop hitting yourself over the head for what you can\'t do. Be happy about the things you can do. You can consider work. Some people with this can\'t get out of bed.
First, S.Edwards tip on adding Borax to the wash so it doesn't get mildew is a lifesaver for me. I could wash the same load of laundry for days before!!!
My "dark room"-- I completely covered the windows in the bedroom and it comes in handy when I feel the headache coming on or just to relax for awhile. I can also nap better during the day with the light blocked out.
Amber light bulbs--I've replaced a lot of the bulbs in my house with amber colored ones. Also put up amber colored sheers on the windows. For whatever reason, the golden light is more soothing and I have less headaches, especially when the snow is glaring outside.
Dark sunglasses--heavy duty, terminator style sunglasses. I can't leave home without them.
Water--I drink about 3/4 - 1 gallon a day. I used to drink at least the 8-10 glasses and found when I increased that I have less "shakiness" and dizziness.
Lap top computer--I can't sit at a computer desk for longer than 5 minutes without my legs "falling asleep" or my joints stiffening up terribly. With the lap top I can lay down, sit, move around...whatever I need to do.
Computer--I've set my internet background to a pale beige color. It's easier on my eyes to limit the bright white that flashes at me.
Rolling kitchen chairs--I've found that I can tolerate anything better sitting down! I use the chairs everywhere! The only way I can mop the floor is to sit on the chair and scoot around the floor!
Little notebooks--I keep several for different purposes. One for grocery list, one for "other stores" list, one my mom (things to tell her or give her), one for my in-laws, etc. I keep them in my purse on the kitchen counter so I can jot things down and I check them before I leave the house and while I'm out.
Buy in bulk--I stock up on things we use all the time to save on trips to the store and the chance of running out or forgetting to buy. Paper towels, light bulbs, t.p., frozen veggies, soap, etc.
Ear plugs--keep in my purse and wear them a lot when I go out. I don't get fatigued quite as much on outings, especially to noisy places.
T.V.--I rarely watch it. There's something to sensory overload. And, you are bombarded with negative messages, even in commercials. When I do watch, it is something upbeat. Of course, the kids watch Barney and things like that but it doesn't drain me the way watching an hour of CNN does.
Shoes--I'm like Mr. Rogers now. I come in and change into my house sweater and house shoes. Keeps me warmer. The other day I forgot to wear shoes in the house all day and had a hard time getting to sleep with my feet pulsing and burning.
Vacuum--I keep a small shop vac with long extension tube and a floor attachment in the closet. I often get dizzy when I do the broom/dustpan thing so this works a lot better for me.
Vanity--I was starting to feel pretty witchy from walking around looking witchy all the time! I worked with my hair dresser to come up with a cut that is totally wash and go, took awhile but was well worth it. It didn't mean short for my hair, just needed layers in the right places. Spray bottle-for water to mist my hair on those no shower days. I bought some comfy clothes that I can nap in or wear to the store.
Online shopping--if I can buy it online, I do. The shipping cost is nothing compared to the week or two of feeling terrible from 1 hour at Wal-Mart.
Reduce clutter--as "brokenivory" related, getting rid of unnecessary stuff, simplifies things and reduces daily stress. Helps you to find or not lose things as easily and less to get messed up and need cleaned.
Hope someone get a tip or two out of this! I'm sure there are more that aren't coming to me at the moment.
I'm still trying to think creatively to come up with little things that reduce stress or help me cope.
Kim, I wrote an article last year on what I ended up calling the Energy Exchange - I should dig that up. Basically, exactly what you're talking about here. I only want what gives back more than it uses up. That goes for people, places, and things of all kinds. And I'm fairly ruthless about it. I'd pretty much give up breathing, if it didn't manage to give me a little more than it takes away. But I'll take a 3-pizza for the price of on delivery any time. The sheer hours of prep time and calories made available by sticking all the extra slices in the freezer and nuking one of them for 90 seconds when I want one is one of my finest Good Exchanges.
The only area I know of where I can give and take freely without paying physically is in the spiritual arena, so I'm a total spendthrift there.
I...well, it wasn't me, exactly. It just came to me when I was terribly sick once. Each and every day, I try to do something for me, something for someone else, and something for no damned good reason at all - simply a matter of not trying live out of one pocket. That might total out to 30 seconds of concentrated activity some days, and every one of them is worth something to me. I hadn't thought of saying "no" as part of that, but I don't see why not. When I say no to bad exchanges, that's definitely something for me, and just maybe for the other person as well.
Heh - this is sort of like that One Paperclip guy, except for energy gimps. Maybe I'll trade up for the better energy until I get a real life - ya think?