It's all in your head.... Really!

Some goddesses are puzzled by this...like me...

Just Fine....

"Since family or friends cannot see the illness, how can it exist? And how can someone believe that the illness is real if everyone around them doubts or scrutinizes it?"

Same book, different quote. I lived this quote for so long. With every migraine, every paralyzing muscle ache I couldn't explain, until even I wondered if I was causing myself to feel the pain and started to blame myself for putting myself through this rats' maze of doctors, doubts, and debillitating illness. I thought I must be mentally ill or I wouldn't want to be sick like this, right?

I remember the same kinds of reactions when I was a kid and finally got diagnosed with a "nervous stomach." Now I just live on immodium, preperation-H, and peppermint tea. Then, I always assumed I was at fault, hmmm, I guess I kinda do now too, lol...guess I haven't grown up as much as I'd hoped, huh?

[if you have a little know illness or condition, and if the symptoms are not visibly apparent, the reactions you receive can change dramatically. "Those with hidden illnesses are often treated with disbelief and thought to be hypochondriacs, whiners, malingerers, or difficult patients," says Higgins. {Bejai Higgins} They can sometimes receive dismissive medical treatment. These discounting reactions from health professionals, and sometimes the patient's family and friends, can begin to generate self-doubt. Self-doubt, left unchecked, can lead to depression and isolation.]

Hmmm, that self doubt thing always sucks. I always have to wonder, do I REALLY want to spend the majority of my life in pain and struggling just to get out of bed?

.....HELL NO! Days like the last few are a good way to answer that!

I finally have a bit of pain relief with going back to one of the old anti-seizure meds I was on years ago that I became accustomed to (so it stopped working) and they added some slow release narcotics to the mix. While I prefer to be in control of the narcotic release so that I can use them only when I really need them, I have to say that I'm getting more done today housework-wize than I have done in months. But I have to constantly counsel myself to be careful, not to overdo just because the pain is in the background.

A good day does not mean a cure...all these litanies have now become part of my internal mantra, because otherwise I try to fight all those doubters and all those judging eyes and push myself WAY past what I should do and pay for it for weeks to come.

For years I listened to the people, and my own head that said, "if I think healthy, then I'll be healthy. If I don't think about my depression, it will go away." This may work to some extent to help me summon energy, and it's helping me do chiqong to try to get the nerve impulses rerouted around my damaged disks in my neck, but I also need to deal with the reality.

The years I've spent fighting this have actually made this so much worse and made my illness so much harder to deal with.

If the energy I'd put into pretending I wasn't in pain or was well had been put into healing or increasing my energy like I did very early on, before I stopped trusting myself, I might have come to an accomodation with this and been able to balance my energies instead of spiralling into depression and starting to believe the sarcastic and mean things that people whisper.

For some reason, the more things that you have wrong with your body, the less sick you are thought to be...somehow that's a medical community correlary. It holds true in the real world too. Maybe it's just that people expect lies to be complicated and so if you're really sick and it's complicated they think you must be lying? I don't know....just trying to think of some excuse for the crappy subliminal attitudes over the years. ;D

I've gotten to where I don't want to say much of anything to anyone because they'll have that long suffering look that says, "here she goes again, another laundry list of symptoms. What is it NOW?"


[They feel that the illness is their fault, and this is often a belief that is confirmed by others. Even their doctors can sometimes not locate a reason for their pain or discomfort or the array of symptoms they are experiencing. And sadly, sometimes their spouses do not and cannot understand the illness.]

The blame game and being at fault, oh boy do I understand that one! Wow, how many times have I offered to give my husband a divorce? Not because I hate him and our kids, far from it, because without having to deal with all the issues of my disability and medical problems their lives would be much smoother. Luckily, Rick is more understanding than I probably would be in his position, though I hope I would be better than some I've met. (Maybe I'm paying back Karma for being a judgemental bitch in another lifetime? hmmm?)

So often it comes down to a choice, would you rather mom did this, or that. Went to this game, or was with the family for a weekend. Medicated herself to attend your school concert, or had a family picnic with you? Did the laundry, or made a family dinner?

I and Rick have worked it out to a fairly good degree. And we are pretty well aware of the realities of living with this thing called disability that tries to suck so much life from our family. I am lucky in that we both believed in the vows we took. We're still waiting for the "in health" part to come around....

The kids have learned responsibility, but I don't think it's necessarily a bad thing. They have compassion. They have also learned impatience for having this alien THING that takes over part of their family whether they want to allow it or not. But the kids actually get more quality talk time with me than I ever did with my parents. This may not be a good thing according to them. ;D They actually have told me that they appreciate me keeping an accomplishments/pain level chart up on the fridge because it gives them some idea of what I'm dealing with and they don't have to be detectives to figure it out.

In 1996, with a toddler and a newborn, with Rick being a house husband, having a doctor refuse to sign a return to work order for me was the worst wake up call I have ever gotten. It destroyed my sense of self worth. We lost our home, went bankrupt. I lost my career, my livelihood, my friends, my social life. Hell, I even lost the ability to balance a checkbook! (I still struggle with that monthly. No wonder they didn't want me managing multi-million dollar projects....hehehee!)

So much of my sense of self-worth was tied up in my career, and now I can't even solve simple problems in life without anxiety attacks. If I push to do more than 2 or 3 hours of ANY activity per day, I have to recover for multiple days....those are the ones other people don't see.

Yet there are still many people who are convinced that I can just, "get up off my fat, lazy ass and get a job and support my family, and I would be just fine." Yes, that's a direct quote. It was only said to my face once, but God, I've seen it in so many eyes over the years, heard it in so many questioning voices, in so many insincere offers of help....

The person who said that to me is reaping what they sewed. I personally am hoping that all of those that have had those kind of non-compassionate thoughts about a situation they really know nothing about don't ever have to live in this kind of agony to learn their mistake. I can't even wish this on them.

Our family time and leisure time has been totally hamstrung to cater to what mom has energy to do. I have to be careful and remember to not overdo things when I'm medicated because I'll pay for it with the exhaustion when I come down.

It's taken me years and I'm still only now overcoming the guilt that it was my body that failed my family this way and that I'm the one that has to be constantly accomodated.

Can we please go back to it being all in my head?

from the puzzled goddess of painful truth