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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The Unpredictable Illness and the Chaotic life it creates

Almost 2 years ago, I bought concert tickets to see U2. Last year they had to reschedule the tour because Bono hurt his back. The date had not been set yet. Back in April, I bought tickets for Soundgarden. They are playing tonight. As it turns out, U2 is playing tomorrow night. It is hot as hell where I live going up to 97 degrees today. This Soundgarden show, is outside. And so is U2 tomorrow night.

Ever since having been on VFEND for killing yeast, falling due to a wedge sandel and then immediately getting my period, all in the same time, a week and a half ago; I have been sick as a dog. The biggest problem is, I can't sleep.

When people write on here how they sleep 14 hours, I feel jealous. I have never had that problem with CFS. I have never been able to sleep. I have been sleeping 3 and 4 hours a night. I understand how sleeping too much is awful, but not sleeping is worse. I don't know how anyone can function, or how I am even functioning on such little sleep. I wake up with this feeling of "Holy Shit"...like a gun just went off in my head, and that is it. I am in extreme pain, which has been the primary symptom of this year.

It just amazes me how I have this new symptom called pain. Pain, like Carrigon speaks of that I have no idea where it has come from. It's the new major symptom that predominates everything.

So, I am in full on anxiety mode, texting my friends...I can't do both concerts, I can only do one and I am having a breakdown. I need someone to go to U2. Or is it Soundgarden I should bag? Or both, I mean, I can't "effin" sleep. Therefore, I can't think.

Another thing that has happened, is that I am not wanting to work anymore. I am tired of my job. I want to quit. Why work and do all of these events when I am too sick to even function? I have limited desire on the jewelry design front due to lack of sleeping and unpredictability.

I am miserable.

The amount of stress I have had from work, on top of the fact that this past weekend my computer or internet blew out due to a major storm. No internet. It was Comcast but it was also Apple and the gadgets I bought (the router which was $400) 2 years ago, that went bust. A "Time Capsule" which backs your stuff up (but wasn't with mine) Also, the battery in my Apple computer, fell out and was oozing out, so that I had to spend my Saturday at the Apple store. It was a defect on Apple's part, but the stress from this, the pain, the illness, the concerts coming up, the date I had and thinking about work....

I am at my wits end, but when aren't I?

Seriously though, I don't want to work as much. And, now I don't want to go to either concert.

I want to be put to sleep. I want what Michael Jackson had...anesthesia to go to sleep for 14 hours.

I know it's awful sleeping all the time, but I would take that over this. I feel nuts and I can't take it anymore. Yes, I have ambien, Klonopin, Dilaudid, Ibuprofen, but NOTHING is helping me to sleep. Nothing.

I can say it on here and hopefully not be judged, but I hate my life. I HATE IT. I would trade it for death at anytime. I don't have enough good times, moments, sleep, or sound decisions to make my life worthwhile. I spend so much time alone that I think, why am I here? And when I do go out, I feel like I am with people who I don't truly always want to be with. Well people. People who don't get me.

I have very few CFS friends really. Not in my area. Only on here and some of the CFS friends in my real life bother me because they are constantly looking for the holy grail to get better. After 23 years (my one friend has had it that long) you are going to fly here, fly there, see this doctor, try voodoo or whatever it is you are trying....every other month.....still? I can't relate. I have accepted this thing. There is NO BEATING IT. You may get better, only to relapse...............again. So all of your money spent, essentially is going out the door, unless you consider feeling better for a month or two, worth the $ thousands you just spent. I love my CFS friends, but some of them I have nothing in common with anymore. The one I talk to and enjoy talking to...actually, there are 2; they both have learned that this illness does what it wants, in spite of all the promised cures that doctor's offer.

Yes, I know. I am sure some are scoffing that I am saying that. You are mad....right? I would just like to have a convo with a CFS friend about how they are living this so called life with CFS, what there problems are from it. I don't want to hear how they just went here or there for this crazy ass treatment. That. will. only. work.....momentarily.

There are a lot of new people on here who will dislike this post. I did all of that traveling and hoping for a treatment from 1989 until 2004. And that was it for me. That's 15 years of serious hope. The hope faded and so did my savings.

Am I here to work? For what? All of the bills that I can never truly get a grasp on? And I get sicker from working causing me to spend more time at the doc's or on meds that are expensive.

"F" it. Please don't write me how you are mad that I am saying this. These are my feelings. Let me have them. Let me vent and feel what it is that I am feeling. I am a veteran with this illness. I have been sick since I was a kid. I am allowed to be angry.


Sometimes I wish I could try that stuff Michael Jackson was on. Just to get real sleep. I can't even imagine it.

People get mad at me, too, when I rain on their parade of still thinking they are going to beat it. I haven't met anyone in over twenty five years who ever got a hundred percent well from this. Not one single person. Never met anyone who really had it that was cured. Nope. I have met people who got better to where they could work part time. But they still suffer from a million cognitive and other symptoms. Anyone who has had this for more than five years, never saw anyone get beyond part time.

There is no miracle cure. Doesn't exist.

We have a right to be angry that we are sick and in pain. If we were happy about it, that would be really sick :)
Thank you, Carrigon. I am sick of people with CFS saying "try this, do that." I have friends that are losing their houses because they are running from one therapy to another with no real results and they are wondering why I will not do the same...."I mean after all, it is your health!" Right, but are they getting better as they piss away another $10,000 in 3 months? No. I would rather have the roof, thank you and try and adapt to this dreadful illness. And I would seriously like to detonate the person who has CFS who says, "It has been a blessing, this disease. It has taught me so much such as compassion and how to live in the moment." Good for you. That's a sad state, to not have been that way previously and to be thankful for a disease? No thanks. I was honestly more compassionate when I was well. Now, I am sick, sick of being sick and angry that my life was taken from me. I don't feel sorry for people like I used to. I am what you call, "bitter." And, I am not proud that I am.

I need to straighten some stuff out and fast. Mentally and physically.
Hi Spit. Can you take a vfend holiday? Can you pulse it the way flagyl is pulsed? You are not likely to get resistance that way. It is too much die off, too many cytokines and yeast ammonia and so on, giving you pain and insomnia. Try to listen to your body as to what it can tolerate and what it needs.

I developed a sleep disorder after getting lyme...I notice I can have trouble sleeping before my period, too. OTOH, the severe insomnia I used to have in my toxic mold apt in NY--days--of sleeping maybe 1/2 an hour a night! or 2-3 at most, days where 4 was a blessing, are MOSTLY (not entirely) a thing of the past, unless there's bad PMS or symptoms intrude (tickle cough being one). I have found camping in wilderness, the more pristine the better, I sleep much better. I can actually sleep deeply in good wilderness. I sleep OKAY in moderately pleasant campgrounds.

It may not be true for you. I am MCS and many things stir my immune/inflammatory response, and those include normal molds, toxic molds, toxic building materials, lots of EMF< neighbor noise, street noise etc.
Jen to the rescue-so here's the thing, I stopped the VFEND a week and a half ago and I am still sick as a dog. So what's going on? I don't know. I am ovulating. I called my doctor sobbing today and he is sending me a prescription for physical therapy. Not sure how that's going to go. I just know this pain is out of control. I can't take it anymore. I need to do something. It has been worse since the VFEND but I stopped that. I can't even think. I can't think. I was actually going to take it again because I feel like, "Ok, you are no better off of it. Take more." I am nuts.
I PM'ed you...
But re: Vfend, you could still be mopping all those nasty yeast fragments, ammonia, glutamic acid, etc. Moreover, the inflammatory immune molecules could take a while to calm down.

Rather than physical therapy, I think something like a colonic might help.And maybe some nano chitosan to mop all the crap up in the gut.
So much talk of Michael Jackson's "sleep med" of choice... I just had an EGD two weeks ago where I was sedated with propofol! It is not the "normal" sedation, but after meeting with the surgeon, he said he would change the meds. I asked what it was right before I went lights out and that's what it was. When I woke up, I mumbled something about knowing why Michael was willing to risk it for that stuff, though the idea of 14 hrs out in that state would probably be unnecessary; it felt like the 1/2 hr I was out was closer to 4 or 5 hrs. It's also pretty easy to see how he died of it quite frankly...

Apple: GD Apple! I hate to advise someone to use a PC, but I learned the hard way that you don't get what you pay for with Apple, and you can actually have all sorts of added problems, not to mention that a decent system would cover the cost of a decent used car. For graphics and business though, I can see why you might have no choice. It still sucks.

Sleep... I have to agree with Jen that it's a matter of time, you might want to measure by one month rather than one week. The only thing I can add to the discussion on sleep is that I'm a believer in the Chinese theory of CFS (usually) is a very qi-deficient state, and the body requires a fair amount of qi to sleep; therefore, the idiot (and idiot doctor's) idea that "if you're that sick, you'll eventually sleep" is untrue and unfounded. A relatively-strong constitution and/or system will cause people to sleep when they need it, but not those who are running on empty.
About Apple; I am not sure I would buy Apple again. My Macbook was $1,200. You could buy 3 Toshiba's for that much. I was in Best Buy and that is how much a PC is. PC, the cost of them has dropped so much, it's awesome. I love the Apple and how you can have several screens going on at one time, but why so expensive and I feel like it's a fad. When you look on FB and around, all you see are iPhones. Everyone has to have an iPhone. And, why? The screen is small. Plus, I like a keyboard.

Never made it to either concert. The next one is tonight. I am not going.

Pain, depression, right now. That's what is going on.
I am in the mind set of that movie "Show me the money". I am also weary of this help and that study. Get the job done already! I've been active in support groups, gone to conferences, been on local TV to promote the cause and offered my dead body to who ever wants it, I've moved to safer, easier living, donated myself and my therapy dog to other hurting people,joined the biobank, prayed, threatened, tried too many drugs, therapies, etc. and after 24years I'm getting sicker. Yes I am still fighting the good fight but I'm disgusted as H*****.
I can relate to your post totally. I have also had sleep issues since becoming sick 7 years ago. Before then I could lay down anytime and sleep like a baby. Those nights are long gone. I sleep most nights although wake up and can't get back to sleep, takes hours to fall asleep or wake up very tired and unrefreshed. Not being able to sleep is one of the worse problems I have experienced. So although Lunesta helps me at least sleep which I am so grateful for it is never refreshing.
I have pretty much had it with doctors and treatments. Since having Lyme treatment in 2006 we have also spent thousands and thousands of money for medications, doctors, tests etc....Almost everything I try either makes me feel worse, I have a bad reaction or it just doesn't work. I told my husband the other day I am close to being done with it all. I could open my own pharmacy with all the medications I have here that I can't take.

I only work 1-2 days a week for about 5 hours a shift and that really wrecks me but it is my only way to the outside world. I know that I will feel like dying when I get home and for the next day but I still do it. I think to myself that my boss has no clue what happens to me when I get home....exhausted mentally and physically and very overstimulated but that is my choice.
I have a couple friends who get it and even when we make plans and I cancel they never give up. I am lucky also that my husband has been there 100 percent for me too. It is family that is the problem....

I am also beginning to hate my life and want my old life back. I know that will probably never happen. I most likely wouldn't be here except for my husband and sons.

I think your post was written wonderfully and I realated to it fully.
Thank you to both PNR and Sox. Sox, I am so happy for you that you still have people in your life that are there for you. Your husband and your friends. You are blessed for having that. I have so many supplements that I bought a little standing cabinet to put them all in. My mom said a couple of years ago when I moved, "this is ridiculous. You have more pills, tinctures, etc than you do pots and pans." She is right and I keep them for what reason? Most of them, I can't even take.
Hey, Spitfire! I saw your comment in a thread that nobody replies to your blog. Well, I don't read the blogs, but because I think you're awesome and funny and REAL, I hopped right over here to read and reply.

I don't know how anybody works with this illness, so you're already amazing in my book. My brain deserts me on a schedule of its own, so I absolutely can't rely on my ability to function in any social situation. Go to a concert? Just the noise of the people would make me crazy.

For me, it's been important to face reality (not saying that you don't!). I've gone through long periods of pretending to myself that I'm almost a bit better, or just about to turn a corner. I try new things all the time (whatever is cheap or free and can't hurt me), and this keeps me sane and hopeful. But now I try them without expectation of a major turnaround or cure. The methylation protocol has helped. Giving up gluten has helped. Going entirely grain/legumes free helps even more (but I can't stick to it!). I'm exploring adrenal involvement now. And I still do EFT when my emotions get wild.

I gave up the life you're living years ago. Concerts, out with friends to restaurants, seeing people every day....long gone. Often my life feels small and boring, but that doesn't mean I'm small and boring. I'm just very successfully staying sane while living with a crazy illness.

Ps 2 of my daughters own Toshiba computers. The keys fall off.
Thank you about the Toshiba computer info. No, I just notice a lot of people stay behind the scenes when it comes to blogs. Someone wrote how a CFS friend came to visit. Short, sweet, to the point and no one said anything. This person is happy about it. I just think as a group, we need to chime in and say something to people to validate their feelings.

Well, for me, working has been a serious salvation and not just for money. Creating helps me and then when I create, I want people to see it and it sells. I am realizing though, that I want to create, but the business of my business isn't so important. I am in a bad way right now and don't think it's going to turn around tomorrow. This year has been awful, with one let down after another and my illness is full on flare. I am having to adjust my life to what is really important.

But, I am lucky to be able to go to a concert or two and go out for dinner and sometimes it recharges my tank. I am not a person that can stand being alone, confined in my apartment constantly. It causes me to be sicker. I also have had better health than many with this illness. And, it helps to have daughters or a family instead of being ALONE constantly with only the tv as people talking. Sometimes, I actually talk to myself to hear my voice.

I love music and I mostly can't hear it anymore due to being unwell and exhausted, but back in April I went to see Chris Cornell. It was an acoustic show and I was in a very comfortable seat. I sat there and felt like I had been through a spiritual experience. That's how music effects me. It helps me tremendously. It is medicine for me.
We have a local guitar player here, Mac Walters, who is the most amazing fast picker I've ever had the pleasure to watch/hear close up. He and his cousin were raised here, and they play together a few times a year in a wonderful 40-seater back room at a restaurant. Half of the audience is their family. I always go to those shows, with a group of friends I only see when Mac is playing. I can't handle big noisy crowds at all, or big noisy music, but guitar takes me to wonderful places.

I have a friend I meet for lunch once a week - that keeps me sane. We used to do EFT together, and other kinds of 'energy' work. That stuff takes you to some very honest places, so we know each other really well. She's the only person in my life who understands where I'm coming from, no matter what I say. Finally a best friend!

What media do you create in?
Awww...Madie, that is nice. I am a jeweler. www.spitfire-designs.com Unusual pieces. I need to try that EFT. I am starting to see a therapist this week and really figure out what it is I need to do to be in a better place. Health wise, mentally, etc. I need some good friends but it's not that easy. Finding a really good friend is as hard as finding a BF. Especially when you have an illness.

I have made some major decisions. I decided to go off of FB-facebook, I have let go of that "friend" and I am just taking care of myself right now. Not making jewelry, not running the business right now, taking it easy. I almost don't care if the roof falls down on me right now. I am just resting and watching tv. I listen to music though!!

Yes, music helps to heal and they say that classical music has proven to have a healing effect on people and those with illness! : )

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Misfit Toy
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