Monday, October 3, 2011

On Retreat

When I was extremely sick with CFS/ME I was a basket case. I was disabled to the point I could hardly leave my house. I had NO ability to deal with conflict or stress and would melt into a blithering puddle reminiscent of the Wicked Witch of the West at the slightest provocation. After much dismissal I had finally found a doctor that believed me and ran a litanous list of extensive tests. He ruled out MS, HIV, heart problems, thyroid dysfunction, autoimmune disease, both bacterial and viral infections and a plethora of everything else he could think of. But still he could not tell me what was wrong with me. I was falling apart because I did not have any idea how to deal with the total destruction of my life. Well meaning friends and family were, quite frankly, up my ass. When are you going to get better? Have you tried this vitamin potion? My friend got better on it. Did you know a lot of people claim to be in pain so they can get disability and don't have to work? Have you tried this? Have you tried that? Oh the list went on. Suggestion after suggestion, opinion after opinion shoved down my throat and if I did not pursue each "idea" presented to me I must be one of those fakers, too. 

I finally reached the point where it became blazingly obvious the tiny precious little bits of energy I had each day were not at all spent on getting better but fielding off these people and defending my right to not have explored 25 suggestions overnight. I could barely make it from the bed to flop on the sofa but nobody understood that at all. None of them had ever dealt with chronic pain or illness yet knew the answer, if I would only just try it. So instead of committing myself to an insane asylum, for that is surely where I was headed, I went on retreat for two weeks. Unfortunately I did not have the money to head off to a "wellness center" where I could holistically ponder and contemplate my situation and just rest. Laying by a pool, getting massages, maybe some acupuncture or reiki treatments.

So what, I thought. I can go on retreat right here in my very own living room! It was not my apartment that was bothering me, nor was it my husband or dog. I sent everyone a mass and vague email that I would be "on retreat" for two weeks and unreachable. I turned the ringers on my phone off, the answering machine volume down and silenced that cell phone, neglecting my email as well. And I sat. I thought, I contemplated, I cried, I prayed and problem solved and laughed, all by myself. My husband would come home from work after a long day and I would have enough energy to actually spend some time with him. It was glorious! At the end of the two weeks I was actually a bit stronger and could deal with the difficulty of others with a lot more confidence, for I had found my voice. I have gone "on retreat" a few times since, when things just became too intense to handle. Blocked out the world at large and got into my own head, heart and soul on my never ending quest to figure out how to live sick in a world that has no patience for it. It is the best thing I have done for myself when my feelings of anger, resentment, frustration and aggression start taking over, consuming my thoughts and ultimately my health. 

Thanks for joining,


  1. Well then I guess I go on retreat on a weekly basis these last 6 months. I retreat to my bed or once in a while even venture out to the couch. Watching movie after movie. Average is 2-7 days per week.

    I don't call it "retreat" though. It's more of a hibernation for anywhere from 2 to 7 days at a time. Don't get dressed. Shower if I get the notion.

    But I don't have a husband or kids. No immediate family. So I can turn the ringer off for days at a time.

    And oh yes; "Hey, I had a friend or I tried this or that. You should try it, it might work." Thing is, I've wasted tens of thousands of dollars trying practically everything. So now I'm broke.

    But I do know what you mean by "getting into my own head." I've just started a workbook about becoming patient to becoming an actual person. And the first section is about 'Do you know who you are?' The exercises are geared at helping me answer that and more.

    As Leah said, "got into my own head" but also "heart and soul." Soul-searching as some may call it. Apparently that is pretty important and the ground work for going to the next step.

  2. Wow, my aunt and I do the same exact thing!! She calls it her "strategic lounging day." I MUST have days like this when I feel a flare coming on or I end up in really bad shape. My friends get angry when I distance myself and it is so difficult to try to get them to understand that sometimes I just need to take a little time off from the world. Things that might go right past someone else can overwhelm me..too much chaos, loudness, anything can set me off. I have anxiety now and my prolactin level is sky high ( I am on the highest dose of meds possible because it won't go down). They did test after test and the only thing that could be causing it is excessive stress. So, now it's time to take care of son is 18 and I can finally REST. I raised him as a single parent mainly and also had to deal with his drug addicted dad and an alcoholic mother..all while trying to balance work/day care, finances..Now I keep my life as simple as possible!!! I STILL feel guilty though when I just rest for a full day..that's how most of us are that have these dreaded illnesses. Thank you for making me feel like I am not the only one (well my aunt and I). Love your's very inspirational. :)

  3. This made me smile....I've always been a little, umm, "anti-social" but since the beginning of the fibro years I've become FIERCELY protective of my time and space. My family and friends have gradually, grudgingly gotten used to the fact that I often don't answer my cell phone, don't read texts, don't answer email until I'm good and ready. "Retreat" is almost my default setting. After years of making myself available 24-7 to demands from friends, family, and most of all WORK, I learned the hard way that my body could not sustain the pressure. I do have kids at home (now teenagers) so they're an exception to the rule, but even they have learned to back the heck off and handle things themselves when I'm overwrought. Thanks for highlighting a lesson all fibromites need to take to heart.

  4. Yet again, I feel so connected with what you have to say. I always tell people that most of the stress that comes from having FMS isn't from the pain (although I'd say that's #2 on my list), it's dealing with people. I want to vomit every time I hear, "You just need to get out more," or "I understand, I had pain when...", or even better: when they start talking about all the problems THEY have to make you feel guilty or make it not seem so bad. Why can't people accept it, like we accept it?

    Anyway, I enjoyed reading this. Thanks for brightening my day :)