As you know, there's a lot more to M.E. than being tired. And the fatigue of M.E. is a lot more like the fatigue and weakness one gets when they have influenza than any other kind of tired. M.E. is a neuroimmune illness and 'tired' is only a small part of living with it.
That being said, I AM SO SO SO TIRED!
I'm emotionally exhausted with life stuff. And I am just bone tired. Is it partly the c. diff? Do I still even have c. diff? Is it a reaction to suffering 2 weeks of severe pain with the AF? (I think the AF might be finally healing - fingers crossed). Is it just an M.E. crash? Am I getting a cold (my throat has been sore more than usual today although that could just be M.E.). Is it my low calorie diet (to avoid the AF pain) taking a toll on my already limited energy?
It's hard to say but whatever it is, I am really really really tired. Exhausted really. Completely shot, extremely fatigued.
So so sorry, up north. You are in my thoughts and prayers.
ReplyDeleteThinking of you, Up north.
ReplyDeleteSorry to hear that upnorth.
ReplyDeleteI like to share a little of my own experience again with you. I understand completely if none of what I say suit your situation, and in that case, please just ignore what I say, because I know how much energy to take to explain.
It is my experience that when symptoms get so complicated, the real right strategy should be very simple. Dealing with each symptom is really bad idea and basically by doing that, we let our complicated illness take initiative over us, not other way around. Here is my example:
I had years a very strange stomach problem, or hunger problem, that is I constantly needed to eat, a lot! Some time at night I could not sleep but had to eat, and often I did not know what I wanted to eat. It was so frustrating because I could not sleep well, and mentally I also very afraid of gaining weight. And at the time all my other symptoms were also unleashed! So I went to see doctors but they could not find anything wrong but suggested heart burn. They also suggested gastric ulcer but I did not believe that. Later on, I discovered that heart burn was indeed part of problem, but mostly it was just "hunger" - I need to eat. My body needed foods. Just that simple!
However, at the time I understood how important diet was, I started "studying" what healthy foods were, such as vegs diet, low calorie diet,etc, which made worse consequence. Finally and fortunately, couple of yeas ago I realized the right diet should not decided by other people, even experts, but our own stomachs! Since then, I listened to my stomach, ate all lots of red meat, also sometime white floor, white rice (by then I had been cutting those "whites" for almost 2 years completely!), lots of soup, lots of foods in my hometown style, which means those what I ate back in China when I was young, when I was healthy. Then, my stomach soon was calmed down, and I had no such problem for almost a year.
By working on just diet alone, my energy level started back up, so my heart problem also was also alleviated. Also other symptoms like asthma, shortness of breath, are almost totally gone. Of course, I also do something else, such as rest a lot, also some walking, stretching. Now I am in real good condition. For recently a few months, I have been function quite normal everyday and being able to deal with routine with ease. I still have some problems left such as slow metabolism and arthritis, but it won't make big trouble for my daily life. I have reason to believe this year I will make real difference.
Of course again, this is just my case. I know your symptoms are mostly different from mine. So just in case it helps.
I personally doubt your low calorie diet could be major problem. But, if you really feel like you want to low calorie diet, it's good, which mean it might not be a problem, but if you "think" you "should" eat such diet because doctors or experts said so, it might be a real killer. Here is the reason why:
I was convinced that real complicated chronic problems usually has hidden causes, and they are very hard to find, and there might be only one “doctor” who is capable for such job, that is our body self regulation system. In order to let our body self regulation system work, we need to feed our body right food, make it strong, not to give it wrong food to make it weak. Low calorie diet, for what I understand, is for detoxification, which usually would make body weak, (unless those healthy people who have good energy saving, so even they don't get calorie supply, they still have energy "saving account" to use).
Another important thing for body self regulation system to work well is rest. I believe if these two things were taken cared of, those complicated symptoms would be defeated.
Just my opinion. Good luck and hope you feel better soon.
I just realized you have stomach problem. Recently I caught flu and could not eat a thing. I found protein powder and nutrition shakes very helpful. Of course,you probably tried those already.
DeleteYun Yi, yes it is a bacterial infection that strikes some people who are immune compromised but usualy those who are taking antibiotics. It can be severe (can cause death). Luckily my infections have been less severe. Due to other issues though I am on a very very high fibre and liquids diet but I'm doing my best to eat as healthy as I can....hopefully when the infection passes I can get back to a higher protein diet again.
DeleteHugs, upnorth! Hope you regain your energy at the very least back to previous levels soon! It's so draining when life keeps throwing you one thing after the other...it's like, when will we ever catch a break??
ReplyDeleteI feel like if it's not one thing lately it's another....at the same time I feel very lucky I haven't had the influenza that's been going around...I really don't want that on top of all this other stuff.
DeleteI was discussing the misnomer of this disease today with my rheumatologist, who by the way, is an absolute gem. Seriously, he's so fantastic, but he really can only treat so much, as the answer is still unknown.
ReplyDeleteAnyway, I said that I could deal with the pain, I'm pretty much in pain from my other condition all the time, it's the exhaustion and PEM that I need treated. That's what I need relief from. That's the problem. And I told him I couldn't even put words to the exhaustion except to say that it literally feels like a cellular death. And he said that's because it is cellular death. And he also mentioned his chemotherapy treatments (colon cancer survivor) and that when he was at a lecture about this disease they likened the PEM and exhaustion to weathering chemo. He said he couldn't imagine feeling that way for 18 years.
So, yes, it's not tired. It's not sleepiness. It feels like a slow death.
Hang in there.
jenji
Sounds like you have a good one there jenji. I would love to have a decent Dr. again. I was thinking this week how much I miss my specialist. I would never have gone through all this trying to get the drugs for c. diff if she was still on my team. As for the 'fatigue', "Slow death" hits the nail on the head!
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