Can't help but look back on how it all started

[PearlGirl26]

I've been living with this illness for several years, but was only diagnosed six months ago thanks to various stimulants and psychotropics I was prescribed over the years that had been masking my symptoms. I have been through all 5 stages of grief and yet, despite having found acceptance, I can't seem to stop looking backward. Every morning I wake up remembering another sign, another symptom I should have caught (there were several). It's driving me crazy.

Has this happened to you? If so, how do you move on? How do you forgive yourself, your family and all of those sh*tty doctors who looked at you like you we're a head case? There's a huge part of me that wants to write to all of those doctors and flash my VO2 max levels in their faces. I am so angry and frustrated. What has helped bring you closure in all of this?

 

[SickOfSickness]

You don't forgive the doctors, you stay mad at the broken medical system and spend a few minutes on advocacy when you can.

You realize you weren't to blame so you forgive yourself.

You read and write on this forum or blogs to get support because a lot if times there is nothing to do but get out those frustrations and know others got through it somehow.

With family and friends you try hard to forgive, but if they don't deserve it and cause you more pain, then you have to cut off some of them, or be more distant.

 

[Daffodil]

what helps me is trying to bring to mind all the people in the world who are suffering even more than i am - people with no food, worse diseases, people living in war, in sex slavery, with severe abuse, torture, etc...especially children living in those situations. this gives me a new perspective on the injustices that happened to me and helps me think of things in a different way.

of course, a lot of time i am still angry and have violent thoughts :-/

 

[PennyIA]

I go through stages. Stages of anger and grieving. Stages where I isolate myself (being a single mother means this is probably pretty terrible thing to do)... but it's a coping mechanism. I use the anger and frustration as fuel for continuing to fight for treatment.

I haven't forgiven the doctors who recommended psychiatric treatment. I suppose, in part... because I didn't react when they suggested it. I was so floored that they believed that they had all the medical answers - and if they didn't have the answer to my issues - it must not be medical. grrr... I let them say things like that to me and I didn't say a word.

On the other hand, I did lay into the doctors and PA's that recommended I exercise more... and am not still angry about that.

 

[PearlGirl26]

For me, the initial symptoms were neurological/hormonal, something I didn't know how to articulate so I assumed what was happening was psychological, which is why I need to forgive myself. I bought into it hook, line, and sinker because I wanted a quick fix via meds. Gradual onset was such a mindf*ck. It wasn't until I physically collapsed from pain and exhaustion that I realized something was truly very wrong.

 

[vamah]

For me, the initial symptoms were neurological/hormonal, something I didn't know how to articulate so I assumed what was happening was psychological, which is why I need to forgive myself. I bought into it hook, line, and sinker because I wanted a quick fix via meds. Gradual onset was such a mindf*ck. It wasn't until I physically collapsed from pain and exhaustion that I realized something was truly very wrong.

My experience was similar to yours. I don't think you can blame yourself for believing what doctrs told you. They are supposed to be the experts, right? Most people don't realize that it isnt true until something like this happens.

 

[PearlGirl26]

My experience was similar to yours. I don't think you can blame yourself for believing what doctrs told you. They are supposed to be the experts, right? Most people don't realize that it isnt true until something like this happens.

Yes. I often lie awake at night plotting a mass education campaign to all of my former doctors (we're talking dozens). Has anyone done something like this? Sent their former docs a copies of test results, personal story, and a list of symptoms to prevent them from making this mistake in the future? I fantasize about doing this in general with GPs, sending them fact sheets, etc. Are there any national organizations attempting this like CFIDS, etc?

 

[PennyIA]

Yes. I often lie awake at night plotting a mass education campaign to all of my former doctors (we're talking dozens). Has anyone done something like this? Sent their former docs a copies of test results, personal story, and a list of symptoms to prevent them from making this mistake in the future? I fantasize about doing this in general with GPs, sending them fact sheets, etc. Are there any national organizations attempting this like CFIDS, etc?

I did go in and practically dance with my Internist last time I saw him. My doctor treating me is in Colorado, I live in Iowa... so I figure I'll keep the Internist around for an annual exam (which gets me money from my employer towards health care costs). When he asked what I was doing, I explained it. He shrugged it off as not important... sigh. Until it's on uptodate.com; he's not going to 'catch onto it'.

 

[vamah]

Yes. I often lie awake at night plotting a mass education campaign to all of my former doctors (we're talking dozens). Has anyone done something like this? Sent their former docs a copies of test results, personal story, and a list of symptoms to prevent them from making this mistake in the future? I fantasize about doing this in general with GPs, sending them fact sheets, etc. Are there any national organizations attempting this like CFIDS, etc?

I sent a copy of my tests results. to my hmo, after their doctor had refused to test for hhv 6 and I had to pay for it my self. It came back wildly positive. No response.