The light is fading...

This past Tuesday, I had on a nice pair of wedges. As I was walking through the mall, I slipped, jerked my body and for 3 days I couldn't stand up straight. Due to the pain, lack of sleep and being on VFEND (the yeast drug), I spent this past week in bed and this whole weekend unable to function. I finally went to the ER yesterday morning due to the pain. I was in so much pain. At the same time as I am at the ER, I got my period. Saturday, I had a migraine from being due for my period. There are just too many things going wrong. I can't keep up with it.

While at the ER, I found that I have a muscle strain. I have a bruise on my lower back and the doc said it's a muscle pull/tear.

I came home with prescriptions for codeine with tylenol, flexoril, and 800 mg. of ibuprofen. I took the meds, as instructed and ended up being drugged, yet comatose and itching. I was told, "oh, you will sleep on these." Not one wink of sleep yesterday. I feel like I can't catch a break. I can't take this anymore. I feel like the light that I sometimes have in me has gone out.

I slept last night, but I feel absolutely exhausted.

I stopped the yeast medicine that I felt was killing me, or was that just me being sick with CFS? Not sure anymore. My friend with lyme who is like this girl on positivity steroids, says, "You have to keep up with the VFEND...ride out the pain and die off." No thanks. I felt awful and I am in too much pain right now to deal with both.

I do know that this year, I have had more pain than any other year, I don't really know what or why and these questions are swimming around in my head. You know what's even weirder? That I have no desire to go to a doctor to find out why. Who do I go to, will I get an answer and what meds will they suggest that I will surely not be able to take. Lyrica made me slur my words. I was horrible on that drug. I used to search and go to doctor's wherever for this illness and now I am just resigned to it. I can't take the let down anymore and every treatment lasts for a time and then doesn't work anymore.

So, it amazes me the hope, strength and energy some people have on here to go from one doctor to another, try new treatments constantly, fly to different states and countries for help. I am not putting you down, it's just I don't know how you do it. I am exhausted and somewhat resigned to this life with CFS where there is no cure. There is no answer. There are better days due to something you take, but eventually, those better days change and that "new" thing stops working. Sorry, that's just what I see after all of these years. Nothing ever really "sticks" long term.

I am trying to get kefir grains, with no response and no luck. Also, I am reading that kefir only really grows in milk? Is this true? I can't drink goat or cow's milk. I can have coconut milk.

Probiotics have done nothing for me. I do mean nothing. I can take a whole mouth full and there is never a benefit.

I am just feeling completely drained and don't have a lot of hope.

I wrote on FB, how I pulled my back and muscle and people wrote me emails saying, "man, you just don't get a break!" It hurt to hear although it's true. I don't get a break. I am dealing with something constantly. When I got sick back in 1989, it's been a never ending problem and emergency. Every year from 1994 to 2002, I had to have surgery. Surgery for endometriosis, back surgery, major teeth surgery. I have never had a break.

Happy 4th of July! Yippity do.

Comments

Hi Spitfire
I can't see the future, but I know its there waiting for us - the answer is there too - keep the light on.
Lots of love
max.
 
Hey Spitfire,
I crashed this weekend and am so foggy that I can't be sure I got all of the details but...
-I'd watch the muscle/pain meds: they never help me sleep (quite the opposite) and pay attention to the itching, it could be an allergy.
-There is a company in OR that makes a "cultured coconut milk" which used to be called "coconut kefir." It's called SoDelicious cultured coconut milk. I asked about the name change and was told some people complained that it wasn't true kefir because its consistency isn't as thick as a cow/goat kefir. From my perspective, it is both delicious and quite thick, especially for someone without the ability to drink dairy of any kind. I think it's the best alternative out there that I know of and sure beat my $200 attempt at making my own coconut yogurt with non-dairy starter (a mere $60+ for that tiny bottle that did nothing).
-It does get difficult to hear, the "you just don't get a break" stuff. Been hearing it lately from new doctors and at the hospital. It somehow is harder to hear when you're not feeling it yourself at the moment, and are just in survival mode. A certain amount of denial about one's "bad luck" is required to keep going.
 
As they say "when it rains it pours". It seems to be happening to you a lot lately and I'm sorry to hear about your pain. It's very hard to manage. I know from experience especially when it's constant, seemingly never ending. It's hard to cope and keep faith that everything will be all right. No one can promise you that things will be better but, I really hope for you that it does.
I too find it hard to stay optimistic but, I'm trying to learn because I know that negative feelings just are not helpful for us,
I hope that things will turn around for you. I know that they can and you need to hold on to that thought.
I'm sorry you have to suffer so much.
Hoping of better tomorrows,
Nielk
 
Thanks to all. ZOE, I am reading that you can't make kefir with coconut milk. You have to use a water kefir. I am thoroughly confused. As usual, any home brewing is always complicated. I was told once to make sauerkraut and I did and I had flies all over my kitchen and it stunk to high heaven. Did nothing but make me want to vomit. We do have that kefir here. I am not sure how much the store bought stuff helps. I know that coconut yogurt (made from coconut milk) is Loaded with sugar. Kind of defeats the purpose.

Yes, I am tired of hearing that I have bad luck. I think I am going to stay off of FB for awhile. I didn't even go on today to look at everyone's good time on the 4th. I don't need to be reminded about how my life is pretty stagnant.

Thanks again! Trying to have a little light.
 
We all go through this Spitfire daily and must bear whilst science unravels - now back from encephaly I choose for my own health to dwell on positives and simple joys perhaps not seen so clearly before.
 
Codeine with tylenol can make you itchy and awake. It's not a good thing to take. Not when you're drug sensitive.

I've been suicidal from the pain this week. My Lyme arthritis has been the worst it's ever been this whole past month. I don't know what to tell you to take cause I'm not having alot of luck there.

All I can say is, the disease has ups and downs. Sometimes we're better than at other times. And the really bad times with it usually don't last. I wish things were better for all of us.
 
You are always so open and honest to tell how bad you feel that I feel moved. I am at a smilar stage. I lost the last bit of strength to keep going to doctors and trying therapies. I am just extremely sick day and night and the symptoms are not even exactly CFS. Nobody else has what I have. I feel so alone woth my ultra-weird constellation of symptoms. Noboy else with CFS has this extraordinary non-stop pain and burning of sinuses, lungs, teeth 24/7, this inability to breath by nose or mouth, and so many more things.

I decided to die with a better body and the last days I have been going to walk and take the sun to the park/pool. I even dared to go to the sports courts where I used to go when I was younger and felt so jaelous from the guys playing basketball (I used to love it) so I dared to play a bit just throwing the ball alone to the basket. I was terrified seeing how my neurology is damaged. I had no coordination whatsoever, felt extremely dizzy, the ball was passing miles awy from the basket... After 10 throws I felt the wild cardiac symptoms killing me. I walked back home totally ill, in my head in my heart, this feeling of extreme sickness and lack of oxygen for a little muscular/cardiac effort...

I think of suicide constantly. There is no hope for me, and the suffering is too wild, too long. Yesterday I went to the pool just to lay on the grass and get some wonderful spanish sun. I bought two newspapers made of paper, something I hadn't done since the internet arrived. I tried to enjoy the sun, the grass, the wonderful sweet breeze and a good coffee. Forget it... you can't enjoy anything with this illness. Feeling deadly sick unable to breath is unbearable. I met an old friend for lunch later in a beautiful terrace. I had to leave her after 30 minutes when we had so much to talk. She is the only friend who hasn't abandoned me. Of course she is married and has no time for me or anything, but she is still there calling occasionally and offering and giving help. She always tries to consolate me saying I still I look good, that it's not my fault that the other friends and family abandoned me and so on. Still... I had to leave after 30 minutes, take a taxi and come home to a dark fresh room here I would die for hours and hours in bed with wild symptoms because I had made the sin of walking too long and try to regain some health and better looks with some skin tan.

By the way... I tried milk and water kefir, I still keep the grains in the freezer. I had to stop them because the little alcohol it makes, made me very ill. I think you can make water kefir with any sort of sugar or sugar-like stuff. Try both grains with the coconut milk, it will probably work with at least one of them. I used tolove kefir in the past. I drank a lot of it.

All the best. Thanks for your honest posts. They help to feel less alone in this horror.
 
Hi Spitfire,

Sorry you have been having a hard time. May I share my kefir experience with you? I am also dairy-sensitive, so was skeptical at first. As you know, you can get milk-eating kefir or sugar-water-eating kefir, but I opted for the milk to forgo the sugar. I don't actually eat the yogurty kefir. I filter it out and eat just the grains (an amount about the size of a cherry a day-it grows back at an amazing rate!), and have had no bad reactions. I had terrible candida and other stomach foolishness for 8 years, and KEFIR SAVED MY DIGESTIVE LIFE! For a while, I was down to only 3 food items that I could digest, and now I can handle a much larger range, including fruit, which I am very thankful for. In addition to the kefir, I also eat (store-bought) raw, uncooked sauerkraut with warm water the first thing in the day. With the help of these two friends, my food life has turned around. I got my kefir from http://www.kefirlady.com/
 
Mr. Cat, I am working on it. Trying to get free Kefir grains. Thank you for your suggestion!
 
Have you figured out the kefir grains? Wayne sent me some - from Washington state to Maryland, and they survived the trip! I made kefir from 2 cans of coconut milk, and it worked just fine. I pour it over fruit.
 

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