Today I was supposed to travel to see my parents. I haven't seen them in 6 months and was really looking forward to it. A good friend lost her father this month. So tough. And it's made me feel strongly that I'd like to see my folks.
But Dam# M.E. I've just been so weak and exhausted I can't tell you. So hard to stand up, even lifting the remote or my book I feel the weakness in my arms, overwhelming me. My muscles have been 'buzzy' and shaky. Also, lots of phlegm, but I don't have a cold or a stuffed nose??!!
Anyways, for days I've been weepy, crying all over the place. This is not like me at all. I do cry on occasion, but not often. Lately, I've been falling to pieces. So I got up yesterday needing to make a decision on travel, and decided to tough it out. I've done it sick so many times, I figured I should be able to do it again.
I talked to my parents, my dad booked my shuttle from the airport, but 1/2 hour later I was so overwhelmed with the thought of having to pack a suitcase and sit up for over 5 hours I just fell to pieces again. I called my parents back, tormented about whether I could manage it. I decided to cancel, or reschedule.
Then, with encouragement from my mom, I decided to go see my Nurse Practitioner, to see if something else was going on. You know, part of me says this is M.E. It's an immune disease that causes severe, disabling weakness and fatigue….that's what it is. My blistered throat, chest ache, phlegm, all of it is just part and parcel of my life. But then why was I feeling so much weaker and more emotional?
Anyways, I managed to get a ride to the clinic, and my NP squeezed me in (a rarity). She thinks I have the virus that's going around. While my nose isn't stuffed up, both my ears were full of fluid, she said, and my throat blistered. I also had a low grade fever and tachycardia. Whether I have a full blown virus, or it's just my stupid M.E. immune system reacting to a virus, it's been tough.
I really had wanted to see and check in with my folks. But I'm so exhausted. Just completely done in. Hopefully in a week or so I start to improve.
After days of feeling horrible, my day was topped off when I heard that in the U.S., they've come up with a new name and definition for M.E. or chronic fatigue syndrome. As far as I can tell, this is not really the disease that I've suffered from for 12 1/2 years. To be diagnosed, (using their new criteria) one does not need to have a single immune symptom, can you believe it?
In fact, one need not have a single autonomic nervous system symptom either. While I was happy to read that OI had been added, it's not necessary for diagnosis. In fact, I could probably diagnose 1/2 the people I know with the disease using the criteria they came up with. I can't tell you how angry it makes me. The only good part of the name they came up with was using "disease" instead of "syndrome".
And while they attempted a name change, what they chose sounds ridiculous. Two of the 4 words are "exertion intolerance". We had a large snowfall last night, and my roommate was out early shovelling enough to get out of the driveway for work. I think she could easily have felt "exertion intolerance". What a joke. Anyways, since immune abnormalities neither come up in the name, and are not necessary to be diagnosed, it's pretty clear that this is not the illness I have, since from onset, I have been dealing with an immune, or neuro immune disease.
I will need to stay away from the news for a while as this has been so frustrating to me. I need to remember there is some decent research being done on the immune abnormalities in the post viral type disease from which I suffer.
Hopefully soon (although history has shown no indication for hope), there will be a better diagnosis and name for people like me - whether it's a B cell autoimmune disease, or inflammatory immune condition, whatever…something that actually refers to the dysregulation and/or disease going on in the body, rather than naming a symptom.
sorry to hear your rough condition. but i think you made right decision. we can't fight against our bodies. it is my understanding about this fierce disease, that the first step of recovering is obeying the physical demands. several years ago my mother died and i didn't go back china, and i was condemned by literally all my relatives. they had no idea how sick i was.
ReplyDeletehope you feel better and find a way out eventually. i personally believe, that the hope of recovering of this type of diseases doesn't lie in medical professionals. tell me one case of CFS/ME cured by them? and not only that, they literally make things worse, as their treatment is harmful to immune system, and immune system alone, is the only hope of cure for these patients.
i found, modern medicine already became a faith/religion for modern people, and they are all blind by how many people died under the hands of medical professionals, only because they believed, as they were told, the causes of death, or causes of the worsening diseases are diseases, not their methods. and they have X-ray to show viruses, germs who killed patients. but, when immune system was destroyed, "enemies" - such as viruses - of course would prosper. i do not mean medical professionals are mean, but i do believe, CFS/ME, or what names they give to it, is out of scope of modern medicine. my reason to say that is because science, mostly deal with common problems, CFS/MC is not a common problem, but individual problem: each patient has his/her own systems and different causes.
it's just my opinion.
edit: modern medicine already became a faith/religion for modern people, and they are all blind about the fact that each year so many people died under the hands of medical professionals. of course they were told the causes of death were diseases, or causes of the worsening diseases are germs or viruses. and they have X-ray to prove it. however, when immune system was destroyed, "enemies" - such as viruses - of course would prosper....
DeleteYun Yi, so sorry you couldn't attend you mother's funeral. That is so so hard. And terrible that your family was cruel rather than supportive!
DeleteI understand why, though, with it being so far away. Sometimes we are just too ill to make these trips.
I realize, too that hospitals and Drs can be dangerous, however, I also think, until they find a clear scientific pathway for this disease and publicize it widely, we as patients will be stigmatized. While I don't see science as a diety, I do think that we have learnt a lot through science as a species. In fact, one of my Bachelor degrees is in science. I have had some pretty horrible experiences with both traditional, but also naturopathic practitioners. I guess at this point, for me anyways, it's about finding the right practitioner…which hasn't really happened since I lost my specialist. I do like my NP, and can't afford non traditional stuff anyways. Sorry, I'm blabbing on now.
Upnorth,
DeleteI too have faith in science. However, modern medicine is a scientific endeavor in an area that is the most difficult, namely human. I suppose one day they would find a way, but when they find it, the whole method would be over-thrown.
I really really like the book "Never be sick again" by Francis Raymond. He was chronically ill for over 10 years and self cured. He is a biologist. I personally believe what he discovered is the hope for modern medicine's revolutionary improvement on chronic illnesses. It is this book that kept me hope when I was in dark, and it is his theory that led me here - I've been relatively well for over 4 months, and very close to completely recovery.
His theory called "one disease, two causes, 6 pathways". I didn't follow his 6 pathways, but the first two was an enlightenment! if you really understand and believe how he explains, you would find a way out yourself. Again, I could be wrong, but one has to try to find it out. It worked for me!