Doing a bit better?

Having a good few weeks. I’m not really sure why, but I’m able to run my kids everywhere they need to be. I’m in and out 3 and 4 times a day right now with swimming lessons, gymnastics and other activities, and surviving it. I hope it lasts!

I even worked out (gasp) for the first time in 4 years last week.  It was huge!  I was afraid to try it, because I thought it might cause a relapse (like it usually would) but it didn’t.  Phew!   Haven’t been able to repeat it yet, but I was very happy to be able to even just do that one time.  Turtle steps.

If you join my church I will love you

This is how the conversation usually goes…

Them: Hey, how are you doing. Haven’t seen you in awhile. Where are you going to church at?

Me: Well, we aren’t going anywhere at the moment. I’ve been dealing with some serious pain and chronic fatigue issues for years now.  I’m going to a doctor in Buffalo to try and get diagnosed, and it is just too much to even think about getting everyone ready for church. My mom has been taking my girls with her when she is able to.

Them: Oh. Well… you should come to our church. We’d love to have you.

Me: In the future when I’m feeling better, maybe that would work, thanks.

Them: Ok, think about it.  Bye.

Me: Thanks…. (wondering why nobody seems to even have the first amount of compassion, but whatever… just pretend I never mentioned the health issues)

A few weeks or so later another person

New person: I heard you aren’t going to church anywhere

Me: True

New Person: You should come sometime. There are really awesome things happening at our church now.  Things are really great!

Me:  I’m so glad to hear it.  So who did you hear that from?

New Person: I heard it from “them.”

Me:  Did they mention why I wasn’t coming?

New Person:  No, but you really should be in a local body you know.  It is really important to be in fellowship… etc….

Is it really such a mystery why I don’t understand Christians who show love only to those within their own circles?  Who have no compassion for people who are relatively shut in due to health issues?  No… because it is the fact I’m not in fellowship that seems to be the gossip trains concern… but if that is such a concern, why don’t they show up to offer it in person?  Apparently fellowship can only be gained in a church setting.

***
Here is a real-life situation that happened to me not all that long ago. (not word for word,  but close)

Woman:  I would LOVE to have you be part of my ministry.  We work with **** two evenings a month, and you and I would work together.

Me:  Wow, that sounds like something I could do, and it is right up my alley.  I would absolutely LOVE to be involved in that!  Please check with your director to be sure it is ok that I am involved.

Woman:  It is totally up to me, and my decision so of course it is ok.  I picked you.

Me:  Please check anyway, just to be sure

Woman:  Ok, I’ll check, but it will be fine. 

Me:  Ok.  I’m getting so excited to be a part of this.

Woman:  (a few days later)  Where do you go to church.  (uh oh)

Me:  (explained my situation in detail, pain, fatigue, thought that 2 evenings a month was something I could handle physically and would love to help people and be able to minister again)

Woman: (a few days later)  oh, we don’t need you after all… my director wants to work with me instead.  Sorry.  (figured, but had gotten up my hopes… knew better)

A few days after this the woman’s mother says to my mother…. “she would have LOVED to work with your daughter but your daughter doesn’t go to church anywhere…”  NOTHING about the fact that I’m in pain and fatigued and nobody is ministering to me.  NOTHING about the fact that this woman LIED to me.  Nothing about the fact that there was NOTHING said about my situation at all.  Not one expression of sympathy… not one I’m sorry… not one offer of help.  Nobody gives a shit.

No… I’m not trying to have self-pity here.  I’m really not.  I’m just saying that there is something seriously wrong with this picture.  They care more about ‘going’ to church than being the church.  And I would have been accountable to them.  I would have been more than happy to be accountable to their church and their ministry.  I would have LOVED to minister to people who also need help and aren’t in a position to come to church on Sunday mornings.  Sigh.

This is why I don’t tell people I’m ill.  I’d rather be judged “lazy” and “backslidden” and whatever else than deal with this.  I’d rather just be a hermit than deal with this.  I’d rather just disappear than deal with this.  So most of the time the conversation goes more like this….

Person:  So how are you?

Me:  Good.  How are you?

Person:  Good.  Where do you go to church?

Me:  Nowhere.

Person:  You should come to our church.

Me:  Maybe someday… who knows.

Person:  Great.  Bye.

Me:  Bye.

And they go their merry way feeling they did their duty as a Christian, and I go mine, having protected myself from being once again judged as someone who deserves nothing unless I attend a certain ceremony in a certain building during a certain time-slot on a certain day of the week.  Sigh.

Acceptance? Maybe…

Have I been judgmental of disabled people?  I never thought so… but I’ve never been one either.  Until the past few years.  But I’ve been judging myself for my lack of ability to do anything.  I’ve berated myself for my laziness and motivation, kicking myself… trying to make my body do what it used to… and it just doesn’t listen!

I have gone from an independent person, to an invalid.  Basically that is the deal.  And I’ve fought it…. to no avail.  My body has not cooperated.

Whether this ends up being chronic fatigue or something else, I have not been able to do much of anything for nearly 2 years now.  It has been longer, but the worst of it hit right after my father’s death the end of June, 2008.   I am just beginning to be able to do some things if I rest up for it.

I’ve never been skinny… far from it… but I have enjoyed a very independent life.  I’ve been able to do what I’ve wanted.  I’ve never been in perfect health or shape… but I’ve always enjoyed exercise and weight training when I could fit it into my life.  Right now, the old ladies in the arthritis swim class can kick my butt… I can’t keep up with them.  Aaargh!  And they go 3 times a week… I can barely handle once, because it takes me a week (no joke) to recover for the next class.

I was even too wiped out to keep up on here for most of it.  It has taken everything I have to take care of my 4 kids… and even then, only the basics!  I miss you all…

I’m seeing a new doctor,  a neurologist,  who is doing a slew of tests… so we’ll see what it comes down to.  But I finally have to accept the fact that for the time being, this body has stopped working the way it is meant to work.  I hope it starts again soon, because I am feeling just enough better now to be BORED SILLY!!!!  And really depressed.

living exhausted without hope… but maybe the sun is rising?

I’ve had pain since I was 16.  Physical pain.   Diagnosed when I was around 26 with Fibromyalgia.  It is a frustrating disease, since the treatment options are limited.   The doctors tell you that you have it, but then they have no idea how to help.

So I’m used to pain.  My neck and right shoulder are almost constantly hurting.  Such is my life, and while I don’t like it, I’ve adjusted to it.

3 years ago I began to struggle with horrendous fatigue, the likes I’ve never experienced except when caused by the occasional all-nighter.  I’ve gone to many doctors, they all just tell me it is the fibromyalgia or depression.  I’ve been diagnosed with adrenal insufficiency, B12 deficiency, Hashimoto’s Thyroiditis, and treatment all of these things still have not erased the fatigue.  I also knew I had a D deficiency, and likewise, the dosage I was giving didn’t seem to  help so I blew it off.  It was an offhand comment by the doctor anyway as I was leaving… oh, you are D deficient, take some D.

This past year has been debilitating.  I haven’t been able to do much of anything.  I have to save up my energy for activities, then it takes 3 days or more before I can function again.  It is very frustrating.  I’ve gained a ton of weight because I seriously am unable to do anything physical without being knocked on my butt for 3 or 4 days.  I hardly eat, but I still gain.  Go figure.

Everyone has the answer.  Have you been there?  You need to exercise… you need to take this vitamin… you need to take that treatment…. Even my mother calls me and wants me to go places with her, and get some exercise.  If you’ve ever struggled with severe fatigue, you know that it is impossible to function!  Often I would slur my speech because I was too tired to talk.  I had trouble thinking, and was always losing things because the effort to recall was beyond me.  I’m so weak, constantly dropping things, tripping over things that aren’t there, and I shuffle through the house sometimes, unable to move faster than a crawl.

A few weeks ago I had an MRI to see if they could find evidence of MS.  It was negative.  They are looking for MS and Lupus at this point, and they are at a loss as to what to tell me.  I was seriously giving up on any hope of ever feeling better.  Finally I was very depressed.  It is actually rather scary to be at the point of giving up but it takes energy to keep fighting, and I didn’t have any.

I didn’t have the energy to write anymore, or read the blogs I’ve always enjoyed.  For the first time in weeks I opened my reader, and the first thing I read was  this article at a friends blog.  It is about vitamin D deficiency and how her daughter is finding help.  Knowing I have a deficiency anyway,  I started myself on some higher doses of D3.  It seems to be helping.    I find myself with some hope again.  I took my family to a nearby city for a day at Chuck E. Cheese’s and the zoo.  I didn’t crash until I was home!  That is HUGE!  It has taken me a few days to recover from that trip, but it is still HUGE!

Hope is a good thing…..