Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Sunday, February 27, 2011

Why-and rambling

Michal asked why touching is a big deal if I don't like it. The answer took a while, but there are a few.  One is that it is not normal to hate and fear touch.  And while I don't need to be (and of course nobody is) normal in everything, There are things I choose to not care about.  Touch, however, has a few things that make it worth talking about at least.  One is that it is inevitable.  I am going to be touched.  Sometimes accidentally, sometimes because it is socially the normal thing to happen and so nobody is going to expect that I hate it, sometimes because it is necessary.  Asthma is no fun and has involved a lot of having my lungs listened to.  Before it was clearly asthma, between it and whooping cough, I still have plenty of symptoms of infection so I also had to go through frequent checks of lymph nodes, etc.  In fact, one exam I was sent for a chest xray to "be sure".  I assumed this was because of pneumonia, but later based on the description he gave of my strange lymph nodes I was actually being checked for lymphoma. Hopefully I never develop another medical problem, but if I do what if I'm not ask lucky and the exams are more involved?  I can barely stand any physical exam that involves actual contact with my skin.  In the same way about 18 months ago a girl I grew up with died from breast cancer.  I'm not able to tolerate self-exams, and I have some risk factors.  Again, touch is important.

Mostly though there are some lines (admittedly in sand) that I've drawn.  This falls on the side of the line that has the label "Things abuse will not take from me".  Dr Mind knows this so although I sounded like this is him being very pushy he was pulling from previous discussions, although long-ago ones.  There are things I'm not willing, at least now, to consider trying to fix.  There are also things that are fixed "well enough".  Touch probably can end in that category, but he is correct that being hugged should not be tolerated but good.  It also is true that if I don't make this ok for myself someday my very not tiny niece will be big enough (she's already huge) that she won't be safe and I won't love her touch.  It's happened with other kids I've loved, and then it's one more time touch is tolerated, and sad.

Mostly though it's that anger, that "how dare this be taken from me?" and the need to take back things that are so basic.  This has been harder so lower on the list of what I was interested in, but I think Dr. Mind is feeling a need to get me headed some direction.  Although I started my own direction that will come first because I finally started talking about my anger at the new illness and what the last months have been like, I also have not done much work on the goals I have set for myself in counseling in a long time.  Which happens sometimes when I have to deal with what life is currently handing me.  But I also have to move on.  I've avoided a lot of work in a lot of sessions lately because I don't feel motivated.  And that's fine.  But it also can become a dangerous issue where nothing happens.  That was where things wound up with the therapist before Dr. Mind; as I got more relaxed and closer to her I did less and less work until I was just visiting a lot more than I was trying to cope, and it turned into my having this false sense of wellness and control of my illness. I have a lot more of that now, but back then?  Not so much.  Yet I remember telling Dr. Mind when I met him that I was very much under control, having no issues because I'd pretty much figured out how to live with the ongoing cycling, etc.  That was 2 months into this blog starting, so if you read from about Mach 1-June 1 2006 (not that any entries) you can see the change that came as Dr. Mind learned this was not true.  It also shows what happened when he believed me and so didn't really trust his own warning signals as I got sicker for some time.  The episode that followed wasn't his fault by any means, and he is the hero of much of it as it occurred partly because I was off meds because every time I'd take them a few days I'd start vomiting and stop, taking a couple days to stop vomiting and restart, then vomit again.  I was being treated for stomach ulcers and we couldn't get med levels because I couldn't keep them down 5 days.  When I went on disability in April 2006 it was partly so I could do whatever it took to keep meds down those 5 days and get levels.  When the levels came back I had started feeling even worse than I had been and was crying because I'd try to talk and the right words refused to come out. I noticed Dr. Mind watching me walk one night, and since I'd reach the point of crying when I couldn't talk that was beyond obvious.  He had called Dr. Brain several days before and told her I thought I was lithium toxic.  I think she thought this unlikely as it was so atypical of how lithium toxicity usually is (probably because I did have ulcers causing problems too) and yet she listened because those symptoms are of pretty bad toxicity.  So she had her staff watching for my labs and when they appeared she called me the minute she'd seen them and told me I was toxic and that Dr. Mind had caught it about 3 days before so she'd been eagerly waiting the labs.  Pretty much from that time on I had to face that I had come to believe I was better than I'd  been, way beter than I'd been, because I had quit working on dealing with having my illness, which was the stage I was at and needed to be at then.  I spent months that summer crying and crying as I learned to face my anger and sadness that had accumulated in 4 years of denail since I was diagnosed.  I learned how to work on topics for longer than my short attention span or courage would let me bring them up; before that my bipolar dealing had been from session to session, different every time so that I never really handled anything.  I needed someone to make me focus, to make me look at my life and illness and see the great holes and sadness that were there because of this disease.

And sometimes I still do.....Because avoiding dealing with pain is a natural reflex and although I've not totally had 4 months off, I have had 4 months off of parts of this.  It may not be totally time to move on, but it's time to think about it happening.  And the truth is I needed that reminder; I am fighting very hard to believe I'll ever be well again or even feel good again.  I know my dr. is trying as hard as possible, yet I'm still exhausted and still not feeling remotely like I was in October.  And there's no timeline for how long before we get there.  Not only does the asthma have to be controlled and any allergies controlled, I have to stop feeling so exhausted which we hope comes with better breathing and better sleep (and seems to maybe be improved the last week or so although yesterday I overdid just doing a little and I've paid today), but my immune system is haywire too and I need to also be healthy.  I have been sick so much lately I can't even count and that makes it all worse, but until the asthma is controlled and that all stabilizes there's nothing to do about it as there's no way to know if I get sick because I'm already a bit sick, or if my immune system is really screwed up by the steroids (not likely as it has happen on and off them), or if there's something else.  As I understand even blood counts don't give much information at this stage because of so many months of so much sickness.  Regardless, I think I need to start moving on from putting my life on hold waiting to feel better and start doing what I can to feel as good as I can the way it is.  I have to first deal though with the 14 angry thoughts that came between typing that phrase and this sentence.  I am not saying I'm accepting that i'll always feel bed.  I don't.  but I am trying to accept that waiting for this to be all better may take longer than I want it to.

And now I have to write many, many notes.  And sleep.  Because sleeping all day isn't enough.  Oh, and I guess I need to eat.  Goody.

1 comment:

Michal Ann said...

Hi Jen! I'm having trouble making sense of the way you interpreted my comment about touch. I wrote:

Michal Ann said...
Please forgive me if this is really insensitive...but is touch "good" for you if it causes so much anxiety?? Who can say you "need" to be touched?

You heard
"Michal asked why touching is a big deal if I don't like it."

I'm feeling protective of you. As you explore this area of healing, I hope you get all the support and compassion you need to make "normal" touching tolerable and eventually even enjoyable.

Let me know if you find the 5# brown rice heating pad comforting. I'm glad you have your cats and your niece and Dr. Mind by your side.

May God tenderly wrap you in a special sense of His healing embrace by the grace and power of the Spirit.

The eternal God is your refuge,
and underneath are the everlasting arms.

Deuteronomy 33:27