Thursday, September 29, 2011

Maybe some Answers?

Last week I had that appointment with the Nurse Practitioner who came highly recommended by a good friend of mine. She listened, we talked. She gave me lots of questionaires to fill out, about different body systems. She asked questions and found things I did not even consider important or worth reporting on. She was thorough.

And I'll see her again for follow up and bloodwork results in a few weeks.

Meanwhile, she wanted me to do one thing: Go on a gluten free/casein free diet. Because, she said, I have all the symptoms of "leaky gut", and gut health is the bedrock of one's health. That...and there's lots of other things wrong that will get ferreted out. But for now, GFCF and we'll wait on the blood test results for seeing how messed up my hormones are.

Ok...I can do that. I assured her I was familiar with GFCF, having cooked for my daughter who tried that way of eating once before.

So, on week ago was my first full day of GFCF and I've been on it ever since.

Day 1: my pain levels were greatly reduced. I was amazed.
Day2: I had a bit more energy. Still less pain.

...and so on. I'm a week in and it is AMAZING. I've been reading everything I can about gluten intolerance and celiac disease. And my horrible muscle burning and pain and aches are GONE.

Of course, it's not a diagnosis, it's a food challenge. But I'll have to think about whether I need to pursue on official celiac diagnosis or if I can just stay away from gluten for the rest of forever and call it good. I'll talk more about that w/ my care provider at my next checkup.

But all that to say: I'm feeling BETTER and from a quarter I never would have DREAMED of pursuing. Who would have thought???? I always ignored my gut symptoms because they were so far in the background compared to everything else going on, that I never guessed it could be a big key in my health. I'm still wondering if it's for real, or if it is all a coincidence, the "normal" waxing and waning of fibromyalgia and or mono flare ups. Time will tell, I guess.

Silent celiac can cause fibromyalgia and it can cause low thyroid. And it can cause an itchy rash which might explain a certain intermittent symptom I've had and ignored since I was 18 or 19 years old! ...among other things. More information to come, for me, in the future.

But I'm oh, so grateful that I'm feeling better than I have in a long time. And for the record...Gluten free /casein free pizza is not yummy enough to bother making.

Monday, September 26, 2011

Baby Steps Towards Plain: Inspiration from a Desert Monk

A desert monk was summoned to Alexandria one day by his bishop. As he entered the city, he saw a prostitute, and he started to weep. "Why are you weeping, Abba?" his disciples asked him. "Because," he replied, "I am afraid for the soul of this young woman. And I am also weeping because she takes more time and effort to be attractive to men than I do to acquire the grace of God."

This is a story that Father Alexis told in his homily this morning, and although I cannot remember the name of the dessert monk in this story, I content really struck me. "...more time and effort to be attractive...than to acquire the grace of God."

And that is what I want to write about today. I think having a "plain" heart, means that this be NOT the case. And then I thought of "Seek ye first the Kingdom of God and His righteousness and all these things shall be added unto you." "All these things" here is clothes, and the things we need for this life.

So it is important not to spend too much time dwelling on (obsessing over) one's clothes, one's head covering (or whether or not, blah blah blah), whether one is "plain enough" or whatever. Conversely it's important not to spent so much time in front of the mirror either in vanity and pride, or in vanity and self condemnation which is also a form of pride. Who are we to loath our selves? Who are we to belittle our own appearance? I did not create myself. I am not the one who decided to give me curly brown hair and huge eyebrows and a sharp chin, or whatever. Give glory to God! He knows exactly what our we need for the salvation of our souls and he gives us everything!

And the effort, dear friends, ought to be put towards acquiring the grace of God. The rest shall be added unto us as well.

Thursday, September 22, 2011

Baby Steps Towards Plain: Definitions

One of the things keeping me from jumping whole hog into wearing "plain" clothes is that "plain" as traditionally defined by the religious groups that practice it, is almost "costumey". One of the motivations is that they be "distinctive from the world".

However, in my little project, I need to find a happy medium. What does "plain" mean for me in my more urban context (people do dress differently here than they do in small town USA)?

I came across a wonderful definition of clothing versus costume that I want to share:
Costume could be anything we're wearing that is about deliberately projecting an image that's not aligned with our spirit & environment.
And in thinking about all of this, the other thing that comes to mind is that it's more about what's in my heart than what's on my body, although I believe that the outside will reflect the inside.

So my baby steps towards plain are going to involve more musings about my vanity, my attitudes, my simplicity of heart than they will about revamping my wardrobe or making/acquiring new clothes.

Having said that, I did make a wonderful brown jumper the other day and it is SO COMFORTABLE. And it feels "plain" when I wear it. Sort of a modern day plain. Not old fashioned. Not fashionable at all, but rather nondescript to the point of not even being "unfashionable". THAT is what I am aiming for: No drama. Just clothes.

Wednesday, September 21, 2011

How it Went

SO....I had that appointment today and I really really liked my care giver. She's a nurse practitioner who is very very well informed and takes a holistic approach to her health care-giving. I filled out tons for forms and surveys for her, and my scores showed that I, for one thing, have an inflamed and leaky gut. We talked for a long time. Additionally, my scores on other forms I filled out show that most likely my thyroid, but also all my other hormones are a hot mess!

She was so well informed, listened to my concerns and was on the same page about lots of things: approves of raw milk drinking (although now I get to stick with raw goats milk), wants me to drink Kombucha and be on a gluten free/casein free diet. For starters. I'm seeing lots of bone broth in my future, I think. I've never been off dairy before, so that should be interesting. And I'll have to brush up on my gfcf knowledge base. Its been a few years since one of my kids tried that diet. The danger, I know, is that there's LOTS of gfcf junk food out there and that is NOT a trap I need to fall into on a regular basis. But it is nice to know it exists for special occasions...

So, the new diet. A new supplement she's wanting me to try, a food journal and symptom journal. In a few weeks, at our next appointment we will tackle the blood work results.

Oh, and she wanted to test me for heavy metal poisoning as well. I got much sicker when we moved here to Louisville and have gained 45 pounds since moving here, without changing my eating habits. Whether that's to do with hormonal aftereffects of the surgery I had or something else, it seems like this excellent practitioner will leave no stone unturned. She is a far cry from so many doctors I've met, who dismiss me and tell me I'm fine. I'm not fine. I'm sick.

Now I want to get better.

Health Care Stuff

It's all I ever blog about, isn't it. I'm sick...blah blah blah...I feel lousy...yadayadayada....

I DO pray, you know. Lots of "Lord Jesus Christ Son of God, have mercy on me a sinners" happening around here. Especially while I'm crying in bed at night because I can't get to sleep. Yes, I am very aware that I write depressed person's blog.

So, today is the big day. In about ten minutes I'm off to see a new health care professional and hopefully get some treatment that will ACTUALLY HELP ME, rather than the smarmy "you are fine" garbage I usually get.

This appointment feels like I'm going to a job interview. I feel like I have to go in there and prove that I am "worthy" of treatment. I pray to God this care provider will treat me clinically, and not based on my blood work. Because I am the person who had a negative pregnancy blood test WHILE I WAS PREGNANT. Yes. I did. Blood tests can lie.

Or maybe God will perform a miracle and my blood work won't lie this time.

Obviously I'm writing nothing productive, just nervous yammering. Forgive me. Well, off I go!

Monday, September 19, 2011

Baby Steps Towards Plain

Plain dressing has, for years, fascinated me. I think Quakers who are plain, the Amish, the Mennonites, Monastics, are all so beautiful in their way. What attracts me to their way of dress is the simplicity and the plain-ness. Now, without being a part of a community that has such a uniform, dressing in such a manner would almost be presumptuous, like going around dressing like a Pirate all the time would be presumptuous. It would be dressing in a costume.

My long time readers will remember that I did a project two years ago, in the autumn, where wore the same two identical brown dresses for a month. It was an exploration of simplicity. It was a fast of sorts. It was a way for me to confront my own accquisitivenes and my own vanity. It is time for me to do another such project.

This time, I am calling the project "Baby Steps Towards Plain". The parameters and the goal of my project will be a little bit different, and I have not thought completely of all that it will entail just yet. But I will, and when I do I will let you, my dear readers, know.

This has been brewing for some time now. You see, last winter, I learned about, and decided to invest a significant amount of money (which I had earned by sewing) into a program called "Dressing Your Truth". When I bought the program, I was just wanting to find some sort of system whereby I would finally be at peace with my wardrobe and with the question of "what to wear". I went through the lessons, and at the end, I thought "For THIS I spent ALL THAT MONEY??????" Yes, it was ridiculously expensive. I thought I would get more, and I felt ripped off. But then I decided that the advice was good and I would make the best of it and get my money's worth, by dingy. This meant that I started investing in costume jewelry and (five dollars here, three or seven dollars there...) and looking at my thrift store clothing purchases in a new light, with an eye to cut and color and style. I bought a faux snake skin jacket. Yes, it fit the DYT "rules" and it "looked good" on me, but egads! I did not look like myself. Gone was the ragamuffin, and arrived was this sophisticated, worldly-wise looking woman. I felt like I had lost something. And then, as the weeks and months went by of me trying to "dress my truth" the TRUTH finally hit me: In order for ME to DRESS MY TRUTH...I would have to start wearing a head-covering again (1 Cor. 11...I can never fully get away from that passage in the Holy Scriptures). This was ME dressing my truth. Not exactly what the author of that program had in HER mind. She'd probably say something about blocking my chakras or somesuch. Garbage, folks. I purchased GARBAGE with my hard-earned money. God have mercy!

But it DID get me a nifty cardboard color chart and it DID get me out of wearing so many flowy clothes that I really DID feel somewhat ill-fitted (read: redonkulous) in. So I DID learn a few valuable nuggets from the DYT course, and the Holy Spirit DID use it to remind me of what once was...and of a "podvig" that's been laid on me by God for whatever reason. I think Roman Catholics might use the term "sacramental" to describe how I feel about wearing a head covering for prayer and in obedience to Scripture and to honor the Theotokos (Mother of God).

So, here I am. Two years ago I did that "Brown Dress Project" of mine and I think I am ready to revisit it in revised form. I'm going to think about "the rules" and get back with you on what I"m doing.

I will say this: Today, I bagged up all my costume jewelry: the bracelets, the necklaces, the earraings...all of it. I'm wearing my usual "wedding rings" even though none of the rings on my hand are from my actual wedding, since I lost the stone to my engagement ring and my hands are too puffy for my wedding band...sigh. I am wearing a cross around my neck on a string. The cross and one simple band to show I'm married will stay. The rest...who knows. But the rest of the jewelry is packed away. It is my first baby step towards "plain".

P.S. I do not do this to make the statement that wearing jewelry is sinful. That's not my theology. But for me, it is distracting. Same with the rest of what I am about to unearth. I hope you, my dear readers, do not take this as judgment on my part, of anyone, because it's not meant to be.

Friday, September 16, 2011

National Chronic Invisible Illness Week: "You Just Don't Get It"

Tonight I went to an American Heritage Girls meeting with two of my girls. Last year I was an assistant leader, but this year I'm just being a mom in the group. I'll still be "helping out" with the older girls, as needed, but I'm not "official". Everyone knows I've had mono and that it's been hard to recover. People are very kind and understanding and solicitous about the fibromyalgia, too.

So, there's this one nice person there, who was describing her day tomorrow...or some Saturday...that family is always on the run, and she described ACTIVITIES from morning until night that she would literally be running from one thing to the next. Her family has four kids, I think. Baseball, Volleyball, this that and the other...I could not keep track. But her description was literally from about 8 in the morning until ten at night...

And I said "Wow, I don't know how you do it!" And she looked at me and said "Well, you do it too!" and I said "No, I REALLY DON'T!!!"

That was the end of that conversation.

You see, healthy people just don't get it. It seems like a thing, a burden, (actually its a CHOICE) but it's also a status symbol and a sign of good caring for one's kids to be that busy...that many activities (and they all cost money, take time, and require ENERGY.)

And no, I really don't do that.

What's my typical day like? I get out of bed, I have breakfast a bit of time on the computer. Shower, dressed. Morning prayers, reading out loud with the kids. History, German, Writing...the subjects we do together. then it's time for me to make lunch and for them to start doing their other subjects.

I, so far, have DONE next to nothing. But like sand running through an hour glass too quickly, as noon aproaches, after a very quiet morning...I am already slowing down.

If I am having a good day, I can get another three or four hours out of myself after lunch. I'm not talking about running around. I'm talking quiet work, at the sewing table, perhaps. If I have to run an errand...ONE errand will do me in. After that, I will be feeling very sick and on the couch. On a good day I will have planned ahead and made dinner in the crock pot sometime during my "good hours".

Today, I was able to do some sewing, and I'm so grateful. It was a good day. This means I had the energy to put one foot in front of the other and keep going, despite burning pain in all my muscles (even while I type this, it makes my arms burn). I went out for an hour to meet a girlfriend for coffee...what a treat! Dinner was soup in the crock pot and a loaf of bread one of my teenagers made. I make it to AHG only because my husband drives me there. My legs and arms are burning all evening long. I am glad I'm not in uniform anymore because this means I don't have to salute the flag. It is less painful to put my hand over my heart instead of holding my arm up in a salute. Grateful for the little things.

Tomorrow, I have to go to the Farmer's Market in the morning. What I don't get to do is help out at Church with the gardening. What I don't get to do is get together with the ladies to help bake for the festival next weekend. None of my kids play sports. No running around for that. Because I know that after the Farmer's Market, since I'm in a flare right now, I will probably be DONE for the day. If' I'm lucky I'll be able to do some hand sewing, even though it needs to be done by Tuesday and I'd like to get it off my to do list.

And I wonder to myself just WHEN will I do the rest of the grocery shopping?

But no, there's no "You do the same thing" in my life. I do very very differently from the average busy suburban soccer (or volleyball) mom. Everything I do is planned and balanced and weighed and measured, because everything I do will come at a price and I have to pay with pain and unbelievable fatigue. And that, my friends, is why I'm dedicating this post to all of those who "just don't get it."

Tuesday, September 13, 2011

In Honor of National Chronic Invisible Illness Week: 30 Things Meme

1. The illnesses I live with are Fibromyalgia/Chronic Fatigue Syndrome and Mononucleosis and Hypoglycemia

2. I was diagnosed with it in the year: 2004

3. But I had symptoms since: 1998

4. The biggest adjustment I’ve had to make is not being able to be as "involved" in helping other people or being at Church as I'd like.

5. Most people assume that I will eventually get better.

6. The hardest part about mornings are waking up in feeling very sluggish with no "get up and go" and having to eat food I don't care for very much in order to take care of my health. 

7. My favorite medical TV shows are the one's that are love ER or Trauma shows.  I used to love Dr. House until he started fornicating with his boss and that ruined the show and I stopped watching it.

8. A gadget I couldn’t live without is my comfy chair!

9. The hardest part about nights is trying to get to sleep and then trying to stay asleep. 

10. Each day I take about 5 pills & vitamins. That's does not count the muscle relaxers and pain meds I might take occasionally.  Usually I try to tough it out. 

11. Regarding alternative treatments I get sick of people recommeding them to me.  I'm on the protocol I'm on and that's what I'm doing.

12. If I had to choose between an invisible illness or visible I would choose WELLNESS! I would never choose to be sick.

13. Regarding working and career, I've never had a career outside the home.  I have been trying to build a sewing business on the side, but will  be slowing that down due to my's just too much. 

14. People would be surprised to know that even on "good days", if I focus in, I can find pain in more than one part of my body.  It's always there.
15. The hardest thing to accept about my new reality has been… that I have limited energy and that I can't do the things I wish I could do.  I always have to "pay later" for exceptional energy expenditures, so my life feels like it's being lived inside an itty bitty box. 

16. Something I never thought I could do with my illness that I did was go on a mini-spelunking tour with some American Heritage Girls

17. The commercials about my illness are stupid and I want to throw a brick at the TV. 

18. Something I really miss doing since I was diagnosed is… 1 being more physically active and actually getting FIT, the fibro is like a barrier to that.  2-and spending time with friends and family, I'm just too tired to do that now.

19. It was really hard to have to give up our dog, Java.  I could not walk him.

20. A new hobby I have taken up since my diagnosis ...well, I've developed my sewing skills even further.  I have also developed my knitting skills, but sometimes my arms ache too much to knit.

21. If I could have one day of feeling normal again I would do normal stuff.

22. My illness has taught me to have a longing for heaven like nothing else in life could have taught me.
23. Want to know a secret? One thing people say that gets under my skin is "are you feeling better yet?"  ...because I'm not going to feel better.  And if I AM feeling better, I know there's going to be a BAD DAY right on the heels of the "good day" if I do too much on the good day. 

24. But I love it when people listen, spend time with me.

25. My favorite quote that gets me through tough times is Lord Jesus Christ, Have Mercy on Me, a Sinner.

26. When someone is diagnosed I’d like to tell them about the Guaifenesin protocol for Fibromyalgia
27. Something that has surprised me about living with an illness is how much inner strength I DO have to just keep plugging along through life.

28. The nicest thing someone did for me when I wasn’t feeling well was anything my husband does, day in and day out he picks up my slack, he's stressed and tired, but when I can't move, he does his work as well as mine. 

29. I’m involved with Invisible Illness Week because I may not look sick but I am.  And fibromyalgia is not just a throw away diagnosis.  It's real, and I'm SICK. 

30. The fact that you read this list makes me feel that maybe I can make a small difference in helping people to understand that just because someone looks good, doesn't mean that they don't feel horrible.

Monday, September 12, 2011

Homeschooling with Chronic Illness

Homeschooling with a chronic illness is more about what don't do, than what I do, do.

I sit in a chair and we read together. ...and then they go off and do the rest of their schoolwork.

We don't go on many field trips....

We don't belong to any homeschooling co-ops...

We don't have the kids in any sports (because mama's too tired and ill to drive during the kiddie sports happy hour time of day)...

Dad helps out with taking them to scouting activities when I am too sick. Dad takes them door to door for fundraisers. (Mom sews the badges onto their vests. )

And my oldest DOES do volunteer work at the local Public Library a couple of times a week.

We don't have warm cozy friendships where we get together with lifelong friends on a regular least not since we moved.

But we DO learn sacrificial LOVE together, in the context of our various illnesses. And we DO go to Church, and we DO pray together.

National Invisible Chronic Illness Week: How my Illness Affects my life in Church

I found out just now that someone out there has decided that this week is "National Invisible Chronic Illness  Awareness Week".  At my house, every week is invisible illness week.

So, I decided to use my blog to participate in raising awareness.  I'll try to blog something more than once this week.  If possible, every day.

Today I am going to write about how my invisible illness (fibromyalgia with the bonus feature of mono this year) affects my participation in my Church.

It's hard.  Writing this makes me sad.

We moved to this community three years ago, and I hardly know most of the people at Church.  We go to a large parish, and it's been really really difficult for our family to integrate into the community, and a LARGE part of that difficulty has been due to my invisible illness.  The rest of it is due to my children's  and husband's autism issues, which has its own host of fun stuff, MANY of which overlap with mine.  

I get invitations to all sorts of wonderful get-to-know-you opportunities, that I just can't participate in:  Baking for the Taste of St. Michael's, the "Parsley Party" to get ready for the cooking to be done, dancing in some folk dancing group...all those things sound like SO MUCH FUN.  If I did not have my invisible illness, I would SO be there!  I would love to dance!  I would really love to bake, and snip parsley with the ladies!  I would love to volunteer to serve food, too, and be a part of things.  But this year, my invisible illness is making it impossible even to volunteer for a few hours at my parish's ethnic festival.  I'm sad about that, but there's nothing that I can do to change it.  My invisible illness prevents me from signing up for anything or joining anything.  I just am too sick. 

And all those missed opportunities, are missed opportunities for getting to know the folks at my parish.  When I can't be there, I don't get to chat with people and I don't know them, they don't know me, and we remain strangers week after week.  I'm just the tired ugly woman that drags herself into Church each week.  But names?  I know hardly any names.  Because I don't get a chance to hang out and bake and cut up parsley.  And when someone does occasionally offer me their name, it flies out of my foggy brain, thanks to my invisible illness.  

I used to sing in the choir.  I love to sing.  I could barely do it with my invisible illness and on some Sundays I would sit in the back of the choir loft if I needed to, but since I added Mono on top of my invisible illness, there's no way.  Choir gave me a sense of belonging.  I miss it.  I miss the community of people that is choir.  Now I'm not a part of anything.  I feel like I don't even belong.

I miss a lot of Church due to my invisible illness.  I was raised to be the kind that went to Church every time the doors were opened.  At St. Michael's that would be every day!  For a while I was going to Matins...but Mono put a stop to that!  On some days, I would also be able to make it to Vespers.  But lately, my invisible illness  has invariably shut me down by around 4 pm and there is just no going to Church at six when you are so tired you can barely lift your head off the pillow of the couch you are lying on.  For weeks, I would wake up on a Tuesday or Thursday and think to myself:  "Today I will go to Vespers!"  But then my body would shut downin the afternoon, and the fatigue and pain would take over, and there would be no going to vespers.  Eventually, I think, I stopped hoping and planning.  I just gave up.  One time I was attending a class on the Church Fathers, and the lecturer decided to hold the lecture in the chapel, after a prayer service.  That was a lovely idea, except for the fact that due to my invisible illness, I could not stay in there...the benches in the chapel are NOT designed for someone with an invisible illness to be able to sit without total body pain  (at least me).  I had to leave half way though.  I felt like my invisible illness forced me to be rude.

Whenever there is a great feast, we try to attend the Vesperal Liturgy.  But I am usually choosing:  Do I eat a snack so that my body has enough energy to BE THERE...and then not take communion because I have not been fasting that afternoon?  Or do I fast and then not have the energy to even GO to Church?  Quite the ironic conundrum.  Thanks to my invisible illness, there are many times when I don't take communion.

My invisible illness is also a challenge for me, because I get a bad attitude.  I know on one level that people care about me, but due to my illness I feel so isolated and alone, that I get a chip on my shoulder.  And then my sinful self hears things people say with the worst possible spin:  "you look great, are you feeling better?" ...I hear it as "Are you finally well yet so that we don't have to hear you whining about your stupid invisible illness?"  I know that is NOT what is in the other person's heart and mind when they ask me how I am...but I battle that evil thought in my own mind constantly.  My invisible illness leaves me vulnerable that way.

So, these are some ways in which my invisible illness affects my participation in my parish.  All these things make me really sad, and this has been a difficult post to write.  I hope that someone is blessed by this, or that someone learns something from what I've written.

If I had a wish list for Churches, it would be:

-Have a place with some couches in your Church building,  where people with invisible illnesses can sit if they need to.  Folding chairs and pews can be utter hell for some of us.   Lovely would be a place in the narthex where the service can still be heard... One parish I visited one time had a room downstairs with a TV where the service was piped in on the screen.  It was the "cry room" for small children, but such might be nice for the achy and in-pain!
-People with invisible illnesses need prayer all the time every day...just like the shut ins, or others who have chronic life issues.  They should be included on the parish prayer list, even if they are too tired or embarrassed to ask to be on there themselves. 
-It is not ONLY the elderly who might be infirm.  If a young person has a cane, please, don't give that person the yaya stink eye.
-Please consider any building and environmental decisions from the perspective of people with disabilities, include invisible illnesses and total body pain when planning and building new facilities.  Please consider having such a voice or voices on the building committee....and if such an ill person does not have the energy to be on a building committee, it behooves such a committee to seek out the ill and infirm to ask them what their needs are.  
- People with invisible illnesses are often lonely.  Committees and societies might find ways of reaching out to such, but most of all PERSONS need to reach out and include the person with an invisible illness in fellowship, even if it's just having coffee or calling that person on the phone. 

Monday, September 05, 2011

Labor Day

Today is labor day! My plans: I'm going to sew, and get as much as I can done on this one cassok job that has been giving me nothing but stress since the day I got it. I've had a hard time focusing on numbers and such lately and the job is pretty much a design job which I WAY underbid...sigh. I have to make so many customizations on the pattern that I just don't feel like doing....I need to get my brain in gear for it and "git er done" as we say here in Kentucky. The reason I'm pushing myself to sew is that I've been feeling pretty sick lately and that's not going to go away anytime soon. I want to get out from under my current pile-o-jobs and then stop sewing for a while. Heartbreaking, isn't it? But with the mono and the fibro and all that, I've gotten myself into such a BAD PLACE, physically, that I need to put myself on some sort of regimen to rebuild my fitness and my health. And that includes exercise and rest. And in order to exercise, I need to a) have time and b) fob off my other responsibilities such as house work onto the rest of the people who live here. So, I must get the sewing done and then I'm going to actually pack away the sewing machine for a while...or maybe I won't. Maybe I can't bear to do that. But no more big jobs for awhile. Meds: Going back on the Guaifenesin protocol for fibromyalgia. It bites, but it must be done. And exercise: I'm not talking about any massive workouts. Oh no no! My level is to painfully walk A MILE, if I can without my muscles burning too badly (it's a fibro thing) and then perhaps end up in the exercise room for some gentle recumbent bike work. Level 2 resistance is minimal but gives my muscles a bit of something to do. Level 1 is merely movement with no resistance at all. I alternate between the two. That's what I did yesterday. I'll do it again today, and maybe a bit more. The whole point of fobbing off the house work is to get out there and do the "physical therapy" as I call it, without actually GOING to a physical therapist. And diet: Back on the hypoglycemia diet to help control the upward slide that is my weight. It's so depression. The main difference though, is that this time I'm not going to get on the scale. I'm doing this to help my cholesterol levels, to help my pain levels (it really does help) and to manage my energy better. The hardest part is not having bread for breakfast and not having a glass of wine at night. I'll manage. At least for a time. So, that's the other half of my life, other than the "dark night" stuff I wrote about. Church is so weird these days. On the one hand I feel so disconnected, and on the other hand, people are so kind to us and say things like "don't leave, you are such a part of us". I don't get it. Perhaps my love receptors are broken. I think they are. I know they are. God have mercy on me a sinner. And's a video that nicely sums up my battle/lack of battle with "the passions". As a matter of fact, I often go round humming "Kill the passions, kill the passions" in the same tune as "kill da wabbit". I battle them, and then I end up falling in love with them again.

Friday, September 02, 2011

Alone in the Struggle: Dark Night of the Soul

Insert blog post about me feeling sick and tired and in pain from fibro. Insert blog post about me feeling overwhelmed. Same song, eightysevenththousandths verse. Could get better, but it's gonna get the old song goes.

That's why I have not been blogging lately. I don't want to complain and it's been a season, a YEAR really, of going deep within and seeing the blackness and feeling the desperation of not really belonging anywhere except perhaps to a little cyber community of likeminded and like-illed persons.

And the darkness is black enough for me to really have to struggle to see the people in my life who DO care about me, and who DO love me, to really see that they do.

I don't know that it's depression so much as me struggling against a fleshly response to being chronically ill. Its hard, you know, when nobody outside your family realizes how sick you are and have been for a long long time. I wear that mask, the happy face when I'm out or when I'm at Church. What else is there to do? Be honest? My honesty is my absence. The times when I'm NOT at vespers. The fact that I don't have the energy to make it to Matins because I've been sick with mono since January and now am dealing with the fibromyalgia kick in the pants I knew would be coming on the heels of the mono.

I'm convinced that people don't like chronic illness. Makes them uncomfortable. They want it to go away. Or they want to pretend like it doesn't exist, or they want to give me advice that will fix it. "Have you tried X diet?" "Have you tried X naturopath/doctor/medicine?" All those bits of advice really just serve to make the advice giver feel better and to make the recipient of said advice feel like it's their fault or that if they tried harder, they would be well.

I know people love me, but the do so at arms length. That's not love, folks. That's sentimentality. It's not love.

What about: I know this is a forever thing for you. How can I be with you in your illness? How can I be with you in your struggle?

But that particular thing is the thing that is so rarely heard. Makes me wonder how I can help someone else. Makes me wonder what the purpose of my life might be? Can I return the same love to others, even in the midst of my own illness and struggle...even when I've not been the recipient of such love myself?

God help me to see where I AM such a recipient. Because I suspect that I am, but that I'm just not seeing it right now.