Hi! I think that all of us with CFS/ME ask that exact question many many times. I have seen people write "how is it possible to be this sick and still be alive?" Seriously. Sooooooooo, you are not alone in this black hole.

I honestly think that weather changes take us down. They take a huge toll on our bodies. For me, when the heat of summer arrives, I find myself confined to bed and just generally sicker all around. So, for me, weather change is killer.

Also, I think our crashes are sometimes so severe that we forget how sick we really are after we've had a few good weeks. Sometimes after those few good days/weeks, the next crash is horrific! THIS IS CFS!! It's awful.

The light at the end of the tunnel is there though. We always do get back up on our feet. Sometimes just as we're thinking we can't take it anymore.

I encourage you to take this extreme bad time, live through it a day at a time with no expectations. Gradually, your strength will return. After five years of this "stuff'" I have learned that when I'm as far down as I think I can possibly go....some strength returns!!

Hang in there....God bless. You are not alone...not for a second!

Darla, thanks for your respons.

Though I wouldn't wish this on anyone, it always does help to know that others understand.......a complete and utter lack of understanding by my parents who are visiting (during the hot weather, no less, which I have told them repeatedly is by far the worst time for me......I am totally with you on that one)...anyway their lack of understanding is one of the reasons that I am so bothered by this and also why I am crashing so bad......won't even try to explain how badly this visit has gone - it would take more energy than I have to do so!

The thing is, though, that even though I have always come out of crashes in the past, every time I have one, it gets worse and lasts longer......and I never have good days - I have some that are almost manageable, but even on my best days I have about 4 hrs of functioning and I still feel lousy and struggle thru those hrs no matter what....and I do know of many people who are totally bedridden and have been for yrs, so the thought that sometime I may not actually come out of it is a reality-based fear.

Anyway, I do thank you for your reply. It helps. God bless you, too.

: ) Tammie

I'm sorry you are experiencing what ME/CFS can do to us. I would not wish this wretched illness on anyone.

Just speaking in generalities, maybe sometimes we need to take a hard look at the way friends and family treat us. Sometimes it may be necessary to consider whether they really care about us...or maybe they just love themselves.

Actions often do speak volumes about what people really feel...which may be something very different from what their words are about.

These are issues we would rather not even consider. But as sick as we are, I think we have a responsibility to ourselves. If there is no one looking out for our interest, we need to be our own caregiver and advocate...that's not always easy where family is concerned.

To put it bluntly, sometimes you need to know when to say "No".

Richie, thanks for your response, too.

Actually with my family, or at least my mom (& my dad kind of goes along with what she wants), she does love me AND at the same time everything is about her.....might sound like a contradiction, but she has shown that both are true many, many times

there are a couple of reasons that I have not just said no, and one is that I do love my parents and already have almost no one left in my life, and don't want to cut them out.....and another is that in a financial manner, my dad IS looking out for my interests as much as he is able and given that disability does not cover my basic needs, I have to rely on having him as a back up if/when needed

Here to lend you support, encouragement and care! Today I was up for a couple of hours and then just had to lie down. I woke up 5 hours later....it is my son's birthday. Plans for the family get together to celebrate were tentatively set for Sunday. I had a message, it was bumped up to dinner tonight. Taking a shower, dressing and driving there wore me out. I didn't eat much or say much, but I was so glad to be there! Everything we do requires a compromise. I am too tired to do the dishes, empty the dishwasher or take out the trash. I'm choosing to spend time here tonight and let the day wash over me....when I got home I realized that earlier when I was so hot...it wasn't just me, my a/c is not working. Gotta get through this week-end.....sending you care prayers, hugs and encouragement...I understand. Tomorrow and Monday are going to be really tough, also have a doctor's appt Monday, praying for the strength to go, then have to drive across town to get some forms completed for SSA application process......I can, I will, I must.... right now I don't know how, just need to pray and rest....gentle hugs!

I wonder this so often myself. I seem to be getting worse as each day passes.

Serce, I am too wiped out rt now to really respond well to your reply, but I wanted to let you know that I really do appreciate what you wrote and that I will keep you in my prayers, and will say an extra prayer re your Drs appt, SSA ap, and stuff

blessings and hugs,
Tammie

mystie, sorry you are having such a hard time, too........this illness just really isn't like anything else is it?

Sending hugs and support.

I've been there and didn't think I'd every crawl out of that hole. But I did. I'm up and down and currently up and hope you find some light at the end of the tunnel soon.

Boy, can I relate to exhaustion truly. I was just reading an article about having no energy and things to help it. I don't know if this will help you or not, but I am giving it a week or two chance. I normally have cravings for sweets, and carbs, and I am going to switch over to a more protein diet for 2-3 weeks to see if I get more energy. It helps to lose weight, which helps our energy level, and blood sugar. It is very hard to give up sweets since I love them, and I won't be perfect to start, but I am going to see if my symptoms improve. Also, since it's so hard to exercise when we hurt and are exhausted, I am going to walk the dog, and do 20 min. of a video for beginners from The Zone in yoga. I'll try to keep you informed if I feel better. Already just from having scrambled eggs, with cheese and a spoon of salsa, a cold glass of ice water I feel better. Could be placebo, but it's supposed to take away the sweets and carbs cravings. After the first 2-3 weeks and the weight loss, you get to add some real whole wheat grains, or real oats with frozen or fresh blueberries on them. Hope it works to give me energy as I am like you, fed up with this fatigue and I've had it since I was 32, and I am 57 now. Enough is enough, good grief...Sylvia

first off, i just joined and it's a relief to see these comments. i don't mean that i'm happy that someone else is dealing with what i deak with on a daily basis, but seeing people that get it makes me feel like less of an outcast.
the heat messes me up really badly too! i'll randomly get the pins and needles feeling in my hands and feet and feel overheated, light headed and super sick. i also find that my pain is worse and my arthritis acts up extra bad. i don't know if you have the perma-rashes as well, but when it's hot, my skin rashes get big and actually itch so badly that they hurt.
and i understand the frustration with your parents! i've tried to explain this to my family, and those who don't write it off completely don't seem to even try and understand. it's so easy to feel alone...which just causes depression and makes everything so much worse!
sending you big (but gentle) hugs!

youdontlooksick, I am so happy to hear that you are doing better than you were!

Sylan, I really hope that the diet helps you.....unfortunately I have developed a ton of major food allergies and sensitivities, and of the very few foods left that I can still eat, beans are (oddly enough) the only protein source I can tolerate, and though I do try to eat some every day, I can't really live on them.......also can only eat avocados as far as good fats go, so I am pretty much stuck with a few carbs or practically no food.......so far my weight is actually ok, though it fluctuates a bit.

Also, I do exercise some. I used to do a ton but after getting sick I had to cut way back on that but if I don't do a little, I literally cannot stay awake at all (but I also don't get to sleep then either.....I just spend my time stuck in this almost asleep, but not quite state....it stinks!) When I can manage to get there, swimming is the exercise that I have found the best......the cool water and the laying down position seem to help.......still it is quite a balancing act, bc if I overdo it even a little, I crash for days.

magictrousers, interesting name, btw : ) glad to have you join us....and likewise not glad that you are sick, but nice that someone understands....and yeah the weather kills me....we have been having a string of mid to upper 90's and very humid and I will be soooooo thankful when it cools down a bit

I completely understand how you are feeling! I have had chronic fatigue for at least ten years and in the past month things have gotten so bad. I just finished college and now have a job offer pending and I cant even imagine working 40 hours a week! The past ten years I have survived by taking daily naps and staying in bed most of the time. I feel better knowing I am not the only one that feels this way, but so frustrated that I am being cheated out of an active life.

Erin