Hi, Nixie. It's really hard to cope. I'm not going to lie to you. One thing I have done is to allow myself to grieve what I've lost. I know it sounds strange to "dwell" on negatives, but it's not so much about staying in that negative place, but more about acknowledging it so you can move forward. I've had to grieve the loss of many activities and hobbies I enjoyed. I've grieved that my mind isn't what it used to be. I know this all sounds like a bummer, but the good news is that after lots of grieving, I'm coming to more of a place of acceptance. No one wants to be sick, but sometimes I ask myself, "Would I really want to switch lives with someone else?" I think, in the end, I have to choose my life, with all of it's pain and struggle. When you choose your life, you get more motivation to eat well and do your best to be as healthy as you can. I can't tell you how sorry I am that you are so fatigued. I know how it feels and it is very overwhelming. You asked about activities that we still do. I read and do needlepoint. I also pray a lot. Blessings on you in your journey. I pray you will find great treasures hidden even in this darkness.

Pamper yourself and don't beat yourself up. Plus all the other stuff triunfadora said. Remember the grieving process isn't a linear process of going from stage 1 to stage X. You will bounce in and out of the various stages hopefully bouncing into the acceptance stage more often than not. When you are stronger, do your research on what services are available in your area to help you when you are extremely fatigued and weak.

When you have a good day, don't tense up and rush, because I have found that that adds to my CFS. Get as much sleep as you can at night. We bought a Beautyrest pocket coil mattresss with a pillow top and with the FM I am sleeping so much better! I am on Elavil 20mg. which helps with the sleep problem, too. Hope this helps. One day at a time. We are here for you! Isabelle1954

When you go through these periods of weakness, how do you cope?
I come here and see I'm not alone.
I call people using my headset so I don't need to hold the phone.
I have paleo meals in the freezer I can nuke or there's always greek yogurt, nutrition is so important.

What do you do to occupy yourself?
I would be lost without my tablet to read on and the tv in the bedroom. I have cats that need brushing and the brush is at hand near the bed for when I feel up to it. I sleep, a lot at those times as well.

Does anything relieve the fatigue or weakness, or help you to function?
For me, like so many others, it's about pacing (which I'm still lousy at after 21 yrs of this) and..... nutrition.
For many of us that means totally avoiding foods we are sensitive to, once we figure out what they are.
For example...If I eat grains, any grains at all, not just gluten...I'm in trouble for days. We've been relatively busy the last 3 days around here, visiting and such and I had a great week last week so I pushed a bit....then Last night I defrosted taco meat and made some tacos for hubby for dinner. Normally I have meat on lettuce with cheese...but I was feeling so good the last week I chanced having one !! taco shell. This morning I have an awful headache, all over body pain and I was up from midnight til 2:30 tossing and turning.
I'm so convinced that what we put in our mouths has as much or more to do with this than anything else...and I know better but I am an imperfect being...y'know?
So that's what Doesn't help...
What does help- eating right, feeling peaceful, certain supplements - mine would be different than yours but mine are high dose b-vitamins, ginger, cinnamon, and 5-htp. Meditation. Gentle exercise. Even if all I can manage that day is to lie in bed and stretch every muscle in my body several times. On good days I go do gentle swimming for 30 min up to three times a week. This was so important to me we sold our home an hour from here to move closer to the pool as there was no warm water pool nearby.
Swimming/stretching/exercise in general is not going to heal you. But it may help get the oxygen moving in your body and keep you from decompensating and getting even weaker. I am not on the graded exercise bandwagon at all. What I can do is all I have been able to do for at least 7 yrs and all I expect to be able to do, but within what we CAN do I think we need to have a plan and try to keep moving a bit for our own sake.

If you haven't already read it, I would suggest the book "How to be sick" by Toni Bernhard. If money is tight you might ask your local library if they have it on ebook and you can read it within a kindle app right on your computer/tablet if you can't hold a book (I know I can't most days)
Ok, i'm worn out.
Hope you are having a peaceful day

I just wanted to say that I think Nina had some good advice and if you read other peoples posts throughout the site you will see a common thread.

Sleep, rest, good diet and pacing are all so important.

I am new to CFS too and am struggling too finding what works and doesn't. Just when I think I have it down, it throws me a curve ball.

You hang in there and reach out to all of us here when you need us.
We are all here to help each other during the good and bad times.

Everyone has given great advice, and yes, pacing, rest, healthy diet and keeping my emotional stress to a minimum are the only things that work for me too.
I am mostly housebound and not able to do much around the house either and there are times where it is frustrating and I cannot hide that from myself or others as masking how ill I felt was partly to blame for my CFS. The more you push yourself the worse you will feel. You have to try and find a baseline so that on those days that you have more energy, not push it too far and end up crashing.
It is different for all of us and only you will be able to find your limits but once you have found them, if you treat yourself well, you can eventually grow stronger. I am working out 'how' for myself at the moment and try to share my progress in my journals, so feel free to have a read!

Everyone has really good suggestions.
Pacing is very important. Creating a good support system is also very important (here is good, and also if you have friends and family or a local support group).
Eat healthier foods, take vitamins, Find things to do that make you happy that don't drain too much energy..in other words, a hobby. It doesn't have to be expensive or elaborate It can be anything from doodling to watching movies to reading or painting, gardening, taking care of pets...
LEarning about CFS more can also help with coping.
Be good to yourself, simplify and de-stress your life as much as possible. Just do what you NEED to do, deligate chores and such to other family members. ASK for help when you need it. Rest as much as you can. Don't overdo it on days you feel okay because it will knock you down for a while, that's where pacing comes in handy.

It's a good idea to buy assistive devices to help you around the house. Walter Drake sells a sponge with a wand handle to iwash the tub & tile with.
Always pace yourself. Don't kill yourself doing chores. Take breaks.

I'm so so sorry... I do understand. I have had cfs for more than 5 years now along w/ rheumatoid autoimmune disease w/ pain swelling, and fatigue that is debilitating. My first year w/ cfs I was housebound, bedbound, and recliner bound... only going to the doctor's office....

I can now work... but find it very challenging. I work about 15 hrs a wk. and it's very easy work.

to answer your question... I found myself starting to occupy myself w/ things that I could do while sitting down. I bought a ukulele and w/ youtube taught myself how to play chords and have really found the playing and singing healing and fun.

I also started to sew and quilt on a machine. ... I found it fun and have really enjoyed it.

I now work and those things have kind of slipped away.

another thing that greatly helped me is Meyers cocktail IVs. I found a clinic 100 miles away that gives them and I get AMP shots. you can google those things and see if they might help you. Those two things have helped me more than anyting in the last 5 years w/ the severe fatigue.

It's horrible... ppl do not understand it.... i'm so sorry but hope that u find some answers soon.

sun

I take vitamins by Dr. James L Wilson because I discovered how much they really help. I take them (3 different vitamins) 4 times a day to keep the stress from re-surfacing. I can really cope and feel normal again, which is what I am accomplishing with these. While I stopped taking them for a short time, it took 2 weeks for the CFS symptoms returned. I learned that, for me, my body must be losing nutrients during stress. These strong potent vitamins seem to act as "medicine" for me. I have also recently learned 5-HTP is a remedy to help me get to sleep during times when it is hard to get to sleep. Supplements, for me have played an Essential role as a natural remedy to avoid taking drugs. I feel that in order to maintain good health or to at least be able to function in life, it needs to come from having many resources and not just come from one. I feel that bad health is an alarm clock sending a message that an internal deficiency is taking place so the remedy is to find out where that deficiency is happening and then nurture it like a plant or a broken down car to make us whole again. At this point, I find that drugs are have not helped me at all; they have only lead me to barely function. These vitamins have given me back my life. I have even fired my last m.d. so no more MDs for me to treat my CF, at this point.

For a long time I found pacing to be the very best thing to minimize cfs and prevent it from getting worse. Not that it always works, but it did better than anything else I found. It's still very good.

What I have discovered works the very best is joy.

You know how stress makes it worse? (For me doing anything physical and cold weather also make it worse.) Joy has an amazing effect in the opposite way.

Temporary or long term, joy has made a huge impact.

Find joy where you can. Even if you do not feel a relief of symptoms, though I fully expect they will not be as bad, being happy makes a big difference in other ways too.

Hi Chicklet, good to see you here!

I suppose I reserve energy for my son and husband. That's important because even though I cannot do what I wanted as a mother, I remind myself that I love my family, and illness cannot remove this.

I have a good friend come over and my MIL, too. My socializing has become limited, but when I am honest with people, most friends and acquaintances accomadate me.

I watch stuff on my tablet, so I don't need to sit at a desk (we don't have a television, but one in my bedroom sounds nice--we keep our kid from too much screen time).

I also reserve energy for my art interest and hobbies. I can't get to them always, and that is sad, because my focus is so fragile, and I tire of sitting at a table. But I always keep it in mind so I can take advantage of feeling up to it. My supplies are kept out on my work table as are ongoing projects.

Luckily, my family doesn't mind that housekeeping is not a priority, and my husband cleans a lot!

Being open with people about my limits has helped me cope enormously. I used to hide my disability and put on a front which was so exhausting.

Oh, yes. Books on tape for when I am too tired to watch anything on my tablet. I lay in bed with the headphones on. I'm an audible member.

Library audio books help me. Especially many in a series, so I can look forward to a long unfolding story. Two I recommend are The Mitford Series by Jan Karon and Alexander McCall Smith has a long series that takes place in Edinburgh,Scotland. Charming and low key stories.

Hi Nixie. I'm new to this forum, but not new to what you're going through. Probably not in much of a position to give advice, but want to thank everyone for what they've said, I needed a lot of those reminders.

Some fortunate ones eventually get better and never have symptoms again. That's always something to hope for, and I do believe in miracles.

Over time you will discover what works for you. Please don't get discouraged or think there's something wrong with you if you try a piece of advice and it doesn't help. Different things work for different people, and nothing works for everyone.

Balance is a key to a lot of things. I try not to be too hard on myself. I can only do what I can do and that's not my fault. Its also not an excuse and I should make sure I don't use it as one. There are also days when in my judgment I need to push myself just a little. Just do a little bit more, then rest.

Sometimes I feel so defeated when I crash for days and only get out of bed to go to the restroom, and to make myself eat. God always puts someone in my path who cares enough to remind me, "Stop kicking yourself. Remember, sleep is when your body heals."

Whoever said about finding hidden treasures in the darkness is SO right. This illness takes a lot away, and there's no minimizing that. But surprisingly, it also....Wait a minute, I am NOT going to say the illness gives!...... There is a Higher Power who is SO VERY GOOD to give gifts to us to replace what evil has taken away. It gave me the deep sense of awe in little things, and the ability to squeeze every drop of good out of every day, and that gives me JOY!

It has given me all the time in the world to finally write that book. I've got one sentence and the rest brain fog. We'll see how that goes.

Another way I cope is my dogs. Don't know what I would do, seriously, without my furry angels with wings and wagging tails. They are great helpers and caretakers. Unconditional love AND entertainment. But I have three. Only get one, that's much better suited to the bad days.

Even as this progresses with me, God and I find more ways for me to cope. I recently had to bring myself to accept that I have reached a time in my life that demands full reliance upon my husband for a whole lot of things. If he doesn't take care of those things, what's the very worst that could happen? Whatever it is, it probably won't kill me. And if it does, I win anyway, cos I'm gonna go to Heaven, and there's lots of folks up there I've been wanting to spend time with!

When I lose my sense of humor, I know I'm in trouble. That's when I have to find somebody quick who just makes me laugh til my face hurts. (And then they tell me, I know, your face hurts me too! And then I punch them and we laugh some more.)

I am praying for everyone whose needs have touched my heart on this forum, and that includes you, Nixie. I hope you have awesome breakthroughs in finding your answers, and many good days ahead.