I can't write. I keep starting posts and then erase them. I've spent the last two weeks ruminating about difficult stuff. Things I don't want to look at head on. Things I don't want to admit to myself, never mind posting in a public blog, but this is part of the illness isn't it? The self doubt. The self questioning. Wondering if you are handling your illness, medical care and treatment plan the "right" way.
What started me down this road was reading other patients' illness narratives. So far I have been reading mostly medical literature. What are the scientific facts? "Just the facts, ma'am." (said in a low voice like the guy from Dragnet) I'm a scientist so I want objective, quantifiable, identifiable information. I want double blind studies not speculation. I've even started watching MIT's bio 101 class online to learn the lingo so that I can understand the papers that I want to read.
While I have been reading other chronic chicks' blogs for months now they deal with day to day stuff. How they handle the boredom. How they handle their illness. What makes them angry/happy/sad/etc. How they save spoons. I have made friends through these blogs and I love reading them. We are our own support group. But this month three things happened; 1) I started reading Recovering From CFS:50 Personal Stories, 2) I started a mind/body course (that I have successfully totally avoided so far), and 3) run across multiple posts of patients participating in mind/body/spirit training to over come some of the symptoms of CFS. This threw me into a huge downward spiral of self doubt.
Based on the scientific literature I had read, I came up with a treatment plan of rest, pacing, low stress and supplements to at least control symptoms and hopefully improve my situation. Maybe I would even get better. But now I was getting pummeled on multiple fronts about the role the mind plays in illness. Since I don't believe in coincidences, I started wondering what these messages were trying to tell me. This went downhill very rapidly. It started with simple questions like "what part does my mind play in my illness?" which rapidly deteriorated to "Am I making myself sick? Is it my fault I am sick?" This lead to a mini depressive bout which made my symptoms worse. Downward spiral begins. And then came the physical component....
Of course spending my first chronic Valentine's Day by myself since my husband was working didn't help matters any. I had just spent the weekend in bed since I had to stop all my meds and supplements for a colonoscopy today so I felt like absolute crap. This meant that I hadn't gone out of the house so I didn't have a card or present for him. I hurt so bad the very idea of having an intimate evening caused pain. Then I got all grumpy from that. I started doing my "I'm fat. I'm ugly. I'm smelly (hadn't showered in days). I'm revolting." Downward spiral continues....
So all these mental things combined with the physical symptoms brought on by the horrible diet and lack of meds and supplements for the colonoscopy procedure became my perfect storm. I have been a horrid mess for about a week.
However, things are looking up. The test is done. I got to eat a wonderful meal of mango fried rice and gyoza from a new Thai place in town and they sent home some complimentary tea that tasted fantastic. I got to take some of my supplements and some Tylenol this evening. I get to eat a real breakfast tomorrow and take all of my supplements. And I have nothing planned for the next four days so I can let my body recover from this latest physical assault. As an added bonus they only found my original polyp regrowing which they removed again. Nothing else is wrong. My large intesting is in general good health and I don't have to have another colonoscopy for five years!! Woohoo!!
I also had the guts to start the mind vs body discussion with my shrink on Tuesday. While that didn't go very well, at least I started it. We'll sort it out and discuss things further. I'll be able to look at some of the things I'm so afraid of with her help. I need her help with the mind part of the mind/body equation. I'm obviously too affraid to do that one alone.
However, something she said stuck in my head; she asked me "What would you do if you weren't afraid?" (I won't go into the fear topic today since it is a biggie and makes for a great topic for another long post.) As a result, I have found myself walking around this week asking myself what would I do if I weren't afraid, whenever I've been confronted with a decision. Consequently, it is affecting all of my decisions. Hubby looked at me yesterday and said that I had more energy than usual which took me by surprise but when I thought about it this new found energy was a result of the fear question. Have I been so scared of crashing I might be limiting myself too much? Hard to say. I think I need to track myself in a symptom journal some more to see if this is true. I might just be fooling myself. I might have just been having one of my random good days. I might have have saved enough spoons from my weekend in bed that I actually had energy to do stuff on Wednesday. Maybe there is something to this mind over illness thing. Then again it might be all crap. We'll see. This is such a work in progress.
Baffled, I'm glad to have found your blog, but sorry you've been having such a rough time. Speaking as someone who's wrestled with both CFS/ME and FM for 15 years now, I would say that the mind can be either your body's best ally in managing your illness or its second worst enemy (illness being the first), but that is as far (in my experience) as the mind-body connection goes.
ReplyDeleteStress responses have both physical and emotional components, and the very real, physical illnesses of CFS/FM are exacerbated no end by stress. I went to the Hunter-Hopkins Clinic in North Carolina for a while, and all they could say about stress was "Avoid this." Since few things are more stressful than chronic illness, finding ways to counteract its emotional effects can be helpful in keeping the symptoms under control.
But CFS/FM are PHYSICAL illnesses. (Just for the record.) :)
A journal is a great idea, by the way--the Hunter Hopkins suggested that, too. I stopped after a while b/c I felt I'd gotten a good handle on things, but tracking meds/vitamins (including brands), activity, diet, etc. can really help show you patterns.
Love your comment. Thanks! While I know that both FM and CFS are real sometimes my head likes to play games with me. I just wanted to document my thought process. When I write interesting stuff pops out on the page that I often can't access by just thinking about it. I also know that others must struggle with the same issues as myself and telling my story breaks the silence and shows this illness in all of its glory and ugliness.
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