Friday, November 18, 2016

Nothing left to Do but Write

It is the fear.  I think fear has begun to run through my veins like an elixir that I cannot purge.  It's unpredictability of symptoms that just when you think you are steady a wave of nausea, diarrhea, light headedness, kind of feels like someone just slipped you a roofie at a rave.  The rave is the disorientation searing throughout your body and lying down even feels unsteady.  I hate that I go to fear; I think the physiology is the rush of adrenaline when your body has the sensation it is going to pass out - this surge then lingers and leaves me reaching for the nearest phone.  My lifeline has always been the phone.

November 3, 2016
Highest of highs bring lowest of lows
Just when you think you have turned a corner...
This week I have sat with this fear for going on 48 hours.  If anxiety is a wave not to be fought but to be surfed- this is a monster that refuses to let up.  Periods for woman with this disease are notoriously difficult, one more thing for the liver to process.  After my genetic testing revealed the double mutation to help detoxify estrogen among other drugs; interestingly the first drug when I was losing 30 lbs quickly was an antidepressant.  I went through 3 different ones half the smallest dose and still my brain felt foggy and I would often not be able to find my words.  Well bingo…there is a medical answer to that.  So now with my age, and peri-menopause rearing its welcome, it is one more thing on the proverbial plate that is getting heavier by the moment.

My parents left Phoenix on Monday.  Monday I had my first new attempt which was an hour and a half  IV.  Had the half hour drive home and collapsed.  Four hours later the insane cramping, weakness and drunk like feeling began.  It is Friday, I have cried more times in the last 4 days than the last 6 months.  I have reached out -knowing I'm upsetting those that I love with my absolute desperation that there seems no answers for.  My precious dog is beginning to show her age so I need to carry her up the steps.  The sun is shining in Phoenix and yet all I feel is the storm approaching and I have no cellar to crawl into.

I don't know what to do anymore.  I did try a new doctor who thought throwing a bunch of pre-cursors to hormones due to my low functioning adrenals would help…think we know the answer to that experiment.  I have discussed trying the anti viral and heavy hitting anti inflammatory drugs; but my history handling these meds hasn't been great.  Trying new things with a body that isn't acting by the rules is absolutely terrifying.  I see others that have gone to "the best" CFS doctors in the world and they are completely bedridden.

November 3rd I had 3 good hours.  Really fantastic, joyful hours.  People can't understand how that is possibly good enough…and that is because they have no idea the storm that could be on the other side.

Thanks to my friends and family that have answered my 3am phone call with calm words and no judgement.  I'm so tired.  Most days I don't have time to miss my old life; managing this new one is so complicated and exhausting.  But lately, mourning is all I seem to be doing.  I really liked my old self - and me and this new body aren't getting along very well…we have moved from mediation to full on nasty divorce.  I just am scared about who will win.


  1. The who is your inside self and if you think on it, what do you absolutely have to have to survive mentally and physically? I have been through this awful time of losing SELF and INVENTING a new self based on what I need. I lost so much. In fact I often described my personhood as feeling like a doorknob. Nothing to see here, move along. The worst times were in an early menopause and it was as if I was allergic to my own shifting hormones. I was 40 and by then I had a few hours in the late morning to do a thing and that was it. The gut and nausea - awful. I tried everything, antidepressants made me much worse. Hormones in pills and from the health food store (Mexican Yam) made me sicker yet. SO I stopped all that nonsense and went off of everything carefully and then added back a few things to see if indeed the hormone replacement stuff was really the problem. IT WAS.

    I tried every craft from basket making to cross stitch to rock polishing to quilt making. My hands do not work well with my eyes and brain, so it was difficult and the final products not so good. Then I went back to writing. I could still type, but slowly. By this time, I realized I did not need people so much. I did not need to go out for dinner. I liked puzzles. I decided that the problem is brain food. I have no idea why medical people think we can live any kind of quality life without brain food. For some it is writing, others art, or music or crafting. I also believed that I could make my brain work harder in areas. SO I set about doing a brain rehab. Slow. But small projects made me happy. I bought crazy socks before they became popular. I have more socks than can fit into 2 drawers. Heather. I don't know if this makes any sense to you. I liked my old self 10 + and I like my new self 10+ because I know who I am and what I want. YES...the damn disease is spiraling me downwards at age 68, but I am here by choice. I hope it gets better.

    1. It completely makes sense Pat ! I think "we" all do an amazing job of coping .. re inventing etc ... but I sure do miss my old life I carry many blessing w reinventing ...but gosh sometimes the old one is so close i can taste it and other times feels unrecognizable
      Thanks so much for commenting !
      xo H


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