Wednesday, January 8, 2014

What I Want to Know...

I want to know why, after decades of this disease, we do not have any standard way of diagnosing it. With the long history of various doctor's studying this disease why haven't they come together to publish what they know about the common blood markers found in M.E. patients. The information is out there.

We need to be able to walk into an MD's office, describe our symptoms and be given a test to see if this is what we have.

Think of how many lives would be spared. How many suicides prevented. How this disease would be able to be diagnosed at the mild or moderate level and spare those who aren't diagnosed early enough, who end up trying to push through symptoms, and consequently spend countless years suffering the effects of severe M.E.- left bedbound and ultimately abandoned.

I want to know why, when I walk into an MD's office, I get told there is no such thing as ME and that I must be suffering from some other "real" disease like cancer and then be subject to a series of tests. MD's inevitably get pissed off when tests come back normal as if I've somehow fooled them.

For God's sake why in the hell does the National Institutes of Health spend $16 million dollars on male patterned baldness and $3 million dollars on M.E. ?! Why don't people fight for us?

There continues to be such a stigma attached to this disease-it's gone on for decades!  Why does this feel like having a modern day version of leprosy? Or why it feels akin to admitting to a committing a crime upon 'coming out' with the name of this disease?

Variation on a theme once I have to disclose I have a chronic illness (only after having to cancel several planned outings or explaining why I can't go to certain events due to the possibility of passing out):

Me: Um...I'm sorry I have to cancel again. I don't want you to think I'm a flake. I have a chronic illness that limits my activity.......
Them: "Oh-what's the name of your illness?" 
Me: " has a benign name but it's really a serious and devastating disease. It involves the immune system, brain, endocrine system."
Them:  "I'm sorry to hear of this-what's the name of it?"
Me:  "It's called Myalgic Encephalomyelitis."
Them:  "That sounds Horrible!"
And then inevitably I feel guilty and blurt  out...."in this country its called "Chronic Fatigue Syndrome."
Them:  silence............."oh"...said flatly (as if I've fooled them into thinking I have something serious).   "I have a friend who has that. She's tired a lot too but when she exercises she feels better.  Have you tried exercising?"
Me:  Sigh. Here we go again...

As an aside why can't people respect issues associated with MCS. They are so attached to their chemical scents. My housemate refuses to stop using those stupid dryer sheets. The vent is below my bedroom. He does laundry CONSTANTLY (he has OCD).

I have an idea for a research study that I'm exploring. I have started a literature review and am surprised there is no existing study, at least not that I've discovered so far.  I have a few advantages for conducting such a study. I'm familiar with the type of research involved with this sort of study. I have some training in grant writing-albeit a long time ago. For my dissertation I was one of the first to do a research study utilizing this particular method. I was one of several Ph.D. candidates featured in a book written by a professor on research methods. The content of my dissertation was original so I have experience doing original work and am familiar with what is involved.  I happen to be affected by lyme, toxins, viruses, bacterial infections, have a poorly functioning immune system, and have the honor of also having a lot of neurological symptoms.

I was once at the severe level. I remember a few months after being diagnosed when just the act of talking felt like an effort. I would lay in bed watching tv. When my then partner would ask me a question or say something that required a response and feeling alarmed at the effort it took. I didn't want to let her know because I didn't want her to be frightened. But she already was. Terrified. We both were. But we didn't speak of It. We became caught in the maze of M.E. That horrible, awful maze that is M.E.--that destroys the lives of all that it touches.

There are times when I have severe neurological symptoms. Fortunately it has only been a day at most but I know that's what awaits me if I don't pay attention.  When those neurological symptoms occur the one question that strikes fear in me is "what if I end up this way forever"?  I remember similar questions would get uttered by friends with HIV when they would catch a cold-"what if this turns into pneumonsystis pneumonia?"  What if that bout of forgetfulness is the beginning aids dementia?

Part of the reason I'm considering this again is because I've been re-experiencing some bad cognitive symptoms (word finding difficulty, difficulty with writing, etc...) similar to when I was first getting ill  I'm also having a re-occurrence of anxiety-the out of the blue anxiety like I did at the beginning. I'm a little worried about it-worried that I pushed myself too long. And there is also an increase of OI symptoms which likely accounts for the increase in anxiety.

Anyway, this research project would be a huge undertaking so I'm carefully considering it.

Oh, in case anyone was wondering-I did put up two posts and then take them down. Stuff is going on with my housing. Could use some positive thoughts about it....

Mumford and Sons-Ghosts that we knew....


Anonymous said...

I love your blog! Love the references to poetry and literature as well as your raw honesty how this horrible condition disables and dismantles our lives! However I am writing this comment bc I wonder if your roomates laundry sheet habit is triggering this flare up. Maybe occational loads of laundry wouldnt have but you write that he is ocd...just may be sensory overload for you!

me/cfs warrior said...

Thanks Anonymous! : ) I've wondered if the laundry sheet has exacerbated my symptoms. It's particularly bad today (headache, malaise, etc).

Thanks so much for your comment and suggestion about the laundry sheets (they should be banned) triggering this flare up.

Cusp said...

If you see my most recent blog post (a rare occurrence nowadays) you'll see I have similar feelings. There's a desperate need for a definitive test.Every time I have said this over more recent years, some bright spark says 'it'll come very soon'...and every time my response is 'Oh yeah ??..I've heard that for over a decade'

The research study would be great if you could cope with it.

As for the MCS, I do reckon that those laundry sheets could well be the cause of some of your recent distressing symptoms. Those things are evil --- I have only to get a whiff of them and I get a sore throat that lasts days and a muzzy head. Please try and find the courage to ask your housemate about finding an alternative for your sake.

Yes...the coming and going ( :) )of posts is rather disconcerting. I don't know why Blogger insists on putting up a reminder of a post that had been taken down. I usually presume that you have thought better of posting...think we have all done that.

Tread boldly my dear xxx

me/cfs warrior said...

That's a great post Cusp. It gets to the heart of things. I know what you mean about people saying it will come soon. When first sick I used to believe it.

I'd like to do the research study and am trying to figure out how much time/energy it would take. It would give me a needed focus as well as a way to make a small contribution.

I had no idea the range of symptoms involved with MCS. Those things really should be banned. My housemate won't stop using them. Since he's co-owner of the house. :( I don't have any recourse except to move. I started looking for places but it feels overwhelming. I've moved every 7 months since the break up. I'm going on 10 months here but, if I keep getting worse due to those dryer sheets I'll have no choice.

I like the thought of treading boldly. : ) xxx

Hayley-Eszti Szucs said...

I want to know this too. I want to know why do I have to feel ashamed of using 'chronic fatigue syndrome' as a name, because it undermines how ill I feel. I want to know why after so long we are still being judged and misunderstood and forgotten about. I want to know why on earth I got like this in the first place that isn't just speculation! So many questions, so little facts or answers. The good thing is, for every rude or hurtful comment, there is a comment of support from other chronic illness sufferers. x Hayley