National Black Cat Day

A nod to my cat, who has been with me almost from the start.  She rescued me from the loneliness.

I hope I write sometimes when I feel really fantastic.  I don't go backwards and read my previous posts.  I'm sure I don't blog like some others do where they're promoting something or telling a story.  I just write how I feel or what new thing helped or hurt, etc. and maybe to me it seems like it's mostly on the negative feeling days that I am compelled to write.  I guess that's the cathartic part, the therapeutic part of it for me.  I need to go out and get some sunshine.  And it is a beautiful day here.  There's not any reason for me not to be happy.  But, I feel empty.  Not unhappy, just empty.  I shouldn't but, I do so I will accept it.  I am cooking something I really love, a squash pie.  And I'm finishing my laundry without undue pain.  Also going to work on my little crafty creations later, which feels sometimes like such a waste of time and money.  Who cares about those little pendants or the crocheted muffs?  What does it matter if I make them or not?  Yes, my house will feel more appealing if there's not clean laundry strewn across my living room but, so what?  What am I left with?  Squash pie.  And in the midst of all this "who cares?" feeling is the "holy cow you ungrateful *****" that I'm not thankful enough for it all.  How can I possibly have a day like this in all the blessings on my list?  But I am, and I do.  So there it is.

Oscar is trying his very best to lure me outside to play.  So, I will now be thankful for him and take him up on it.  Having faith that at least it might help.

Grateful for the fundamentals.  My shelter, my abundant food, clean water, indoor plumbing, electricity, peaceful and happy marriage.

Someone have a happy day.  Mine is at risk.

Oh, How I Hate That Dream

I had it again.  The dream, or nightmare rather, that I loathe.  Writing it here again, hoping to chase it out of my subconscious.  I know why I had it.  Yesterday morning was easy.  Walked the dog, did laundry, other chores, played with my clay, listened to music, all until the driver picked me up at noon to go for my brain MRI.  That ruined me.  Not the MRI.  The drive down.  He took the roads in such a way that my body was literally shaken badly enough that by the time we got there, I could barely stand, and I didn't have my chair, only my cane.  Just the manner in which he drove brought every symptom on and turned them to MAX.

As before in the dream, the person after me is someone I've loved all my life.  Someone I still love now, someone in my family of origin.  I'll use the pronoun he for the sake of writing but, I never want to disclose who it is for fear of hurting this beloved person.

He controls me.  He makes sure I go nowhere without him.  He has told everyone, everywhere we go that he plans to kill me in a very surprising and painful way.  We went to a club type event and they all knew what he was planning and no one would help me or hide me or defend me.  They all just left me to be terrified of what would come.  I was trying to convince them that I'd done nothing wrong to him, I didn't deserve it, but he had their ear.  I pleaded with everyone to help to no avail.  I tried to hide and was found again and again.  He laughed in my face at my figuring out I was in his grasp.  He put me in a car and told me to leave knowing I didn't know where I was so, I'd inevitably end up returning to the spot He was in waiting for me.  There was no escaping him and he enjoyed every second of it.

He represents my illness, according to my therapist.  That rings true for me.  When symptoms are at MAX like they were yesterday, it does control me.  A better way to say it is that it limits me but, really limiting is controlling, one just sounds a bit lest negative than the other.    It is always waiting for me, no matter where I go, it is with me, taunting, telling me there is no escaping it.  Just when I am enjoying some freedom from it, like yesterday morning, it comes in and warns me of my painful imminent death at its hands.  Reminds me that I am the prey and it is the predator and it will never stop until it succeeds.  I understand that my illness is not known to be terminal or even degenerative.  I do.  I also understand that my quality of life in general now is far higher than when I first got sick 10 years ago.  I try hard to mitigate what I live with and how I live.  But, quite a lot of how I feel is outside of my control.  For instance, the driver yesterday, unbeknownst to him, brought on every symptom I can have.  From severe pain to migraine to fatigue to depression,  All in one 20 minute ride.  And after, I could hardly even stand up.  I had to be helped to walk to the MRI appointment.

Further, this morning I had to get straight out of bed and into my wheelchair.  Something I've not had to do for quite a few months.  I'm angry.  I'm frustrated.  I'm sad.

I'm going to dress and eat and go to my pilates class at 9:30 when another driver will come to fetch me.  Despite wanting very much not to leave the comfort of my home, I'm going.  It has helped before, helped very much.  So, I am just going to hope for the best and trust that Christ is with me.  Frankly it couldn't be worse than yesterday's spectacle unless I lose consciousness.

This morning, I have gratitude for this computer and the fact that I can type these thoughts.  You see, it isn't very hard at all for me to tell the story on the keyboard.  But, if I tried to tell the story verbally, you'd hear a quite different description.  My brain blocks so much of my vocabulary from my mouth that I end up sounding like I never went to school in my life, let alone college.  But, somehow, I can make sense of my thoughts still, and am able to use this cathartic way to get them out of my head.  So, today, if you can have an easy conversation with someone, be thankful for it.  Some of us can't.

In ALL Things Give Thanks

As I'm going about my morning routine, feeding and watering animals, putting clothes in the dryer, scooping litter boxes, I have had an idea.

I am going to be consciously thankful for my fibromyalgia.  There are times when I have been thankful for some aspects of it before, but not always, and not as it unfolds, symptom by symptom.  I am going to CHOOSE to see it as a BLESSING in my life for which I was picked.  After all, there is absolutely no reason why this fact would be wrong.  Yesterday's passage in Jesus Saves spoke of His sovereignty and love.  It referred to why we imagine that He lets cruelty happen in our world, and the finite nature of our minds.  It is simply not for us to understand.  To spend time trying is to waste the glorious life He has given us.  So, I am making a choice today.  I don't know that I will be able to stick to this mindset when severe symptoms clobber me but, I am able to commit right now, this morning.  So, I will give it a practice run and see how it fits.  I would like it to fit snugly but not tightly.

Reasons why my debilitating illness is a BLESSING:
1. Hopefully, others will experience in me a presence of Christ's love.  Ideally, they may see that as an example.
2.  I provide a genuine reason for strangers, friends, family to demonstrate generosity and kindness.
3.  I am provided a glimpse at those who are hardened by the world and do not care for humanity or the suffering of others, thus giving me an opportunity to pray for them specifically.
4.  I can live in a purposeful way.  I can choose what to do, and when (within my limits, of course.  I cannot go rock-climbing, lol.).  I am not required to go through busy motions, filling my mind and soul with pollution.
5.  I try to live happily and joyfully whenever I'm able.  The result is that in my home, a man, a dog and a cat are all happy and content.  Thus, if I pass before the animals or my spouse, there is a greater chance that they will be able to continue to spread the happiness that I hope I have planted.  (I do not presume to take full credit for anyone's happiness but my own, but I do know that I have created an environment of love in this home.)
6.  I give others an opportunity to thank God for their good fortune and good health.
7.  I open discussions between children and parents about folks who have different health needs.
8.  I am funnier than I was before.  I take everything less seriously.  I laugh more.
9.  I've been given an opportunity to get to know both my parents in their retirement years, and they are not only loving and supportive of me, they are healthy themselves.  Many do not get such an opportunity and I do not take it for granted.
10.  I no longer dwell at all on the future or what it may bring.  I am in full awareness that I do not now, nor have I ever had a crystal ball and to pretend I do is an insult to my Savior.  His will will be done.  Not mine.
11.  I can observe Him everywhere.  In all creation.  In every flower.
12.  I have truly learned once and for all that fear is the absence of God.  Nothing more or less.  It is a creation of darkness and I will have no part in it.  (Not to say that some of those ice-pick stabbing pains don't alarm me sometimes, they do.  But, I am only very temporarily shaken.)

I've gone through my one allotted cup of coffee now so, I will go and get on with my day.  The bus comes for me in 90 min and I want to be just a bit more productive before that.

I will try to not strive for the independence my humanity craves, but instead go to Him when I am in need.  He said He will never abandon me.  Time for me to prove I believe it.

May you all have happy, happy days!!

Balance

It has been a while since I've updated, it was nice to be missed (my lovely SIL).    I have worked through some of my grief.  I don't feel sad at all most days.  I was quite disappointed when we came home from a trip to the mountains, (my favorite!!!) that I had altitude sickness while I was there.  But, it was pointed out to me by a friend that I still had a great time and got to do such fun activities, and was in general blessed to have the opportunity.  So, I promptly got over myself.

It's interesting that we find a way to want things to be the way WE want them to be, not how they should be or how HE will have them be, as if we have any power.  You'd think with faith would come a comfortable relinquishing of desire to control, but it doesn't.  We want what we want, when we want it.  Most of us do, anyway.  I am guilty.  Have humans always been like this?  And those who "go with the flow", "let go, and let God" are sometimes judged as inactive or unproductive or surrendered.  Really though, they have got it right.  Maybe one day I will be able to stop trying to be in control.

Anyway, I've been lucky to have stumbled upon a little support group.  A small gathering of ladies, all who have fibromyalgia get together at a local coffeehouse.  It is so meaningful to have them to chat with, and have their names and numbers so that I can keep up with them during the week. Sometimes you just need to talk to someone who knows what you are experiencing.  I'm especially grateful for the group leader /coordinator who drives me there and home.  So much about my life causes me to feel outside the normal boundaries of social gatherings, but this group brings me back to what I know is factual, that I am a normal woman, responding as best I can to a can of crap, which I'd much rather put back on the shelf.  It is a blessing.

I am also actively asking Christ to be with me in my home during the day.  I used to fill the silence here with noise.  I thought it made me less lonely if TV was on.  It didn't really matter much what channel, as long as it wasn't high drama or news.  Too stressful on both those counts.  But, I'd keep a DIY show, or a cupcake war, or buying a house in Alaska, just whatever so that I was there and not here.  The change happened when we dropped our cable.  Now television is not as easily available, not as much anyhow.  And frankly, I do know how to turn it on and find shows, but, I just don't.  When Tim comes home, then we turn it on after a while.  But, I have begun really listening to music I love again, and singing again.  I even thought about getting my guitar out.  I didn't get so far as to do it, mind you, but I did consider it.  And, I listen to some audiobooks sometimes.  But, and this is the new thing, I live in the quiet because I want to hear Him speaking to me.  I feel like there is something for me to know or learn or do but I don't know what.  So, I spend some of my time every day just quiet.  It was a challenge initially, there was a noise withdrawal issue.  But now, I cherish it.

I live in such abundance.  In a country of abundance.  In a time of abundance.  I am so grateful for it because it allows me to be physically, mentally, and emotionally comfortable.  I see living conditions in other parts of the world and I wonder if I'd even manage to survive there because the environment is so harsh and I've got such a small window of acceptable requirements.  I hear about or read about folks who are emotionally unstable or impoverished and I am grateful that I feel compassion for others in my heart.  I pray for those who lack the ability to think clearly for themselves, hoping they have trustworthy caregivers in their lives.  I have felt profound confusion which is not the same as mental handicap, but it is my measure of comparison.

It feels like life this week is starting to find a balance again.  Fatigue was my worst symptom this week.  Twice I slept 12+ hours a night, and took naps on those days.  Trying to go with the flow.  Wanting to get a few things done but, also not putting undue pressure on myself to perform activities.  Endeavoring to be the Marie He wants me to be.

Thankful that I live in an age that spreads my words to someone who might benefit from them. Thankful also that I was raised to give a damn, and that I know how to say so.

Have happy happy days!

They Won't Come

I want to cry.  I want to cry this afternoon more than I've ever wanted a piece of chocolate.  I can feel inside me that I need to.  But, the tears won't come.  I now realize what I hadn't thought of before Monica passed away.  Getting through the grief  of losing her won't be like anyone else I know.  I won't be able to just compare and console and understand in a way that is ideal and healthy.  It will take me much, much longer.  And cognitively I will stay in a fog for more extended periods of time.

One component of my illness is depression, which makes perfect sense considering pain is ever present.  I am on an effective regimen of anti-depressants (I take a cocktail of 3 kinds every morning)  and would not consider going off them for any reason.  Not only will I not do it, my entire team of doctors would not allow it, I'm certain.  And those medicines are the reason I can't cry for her today.  I want to.  I miss her.  Anti-depressants effectively shorten the range of emotion available to us.  I no longer can feel my lowest low feelings.  Also, I can no longer feel my highest joys.  My range is maybe a 6 to a 14 instead of  a 0 to 20, if numerals help you.  I accept that because I must.  I am at peace with it only because I acutely understand the alternative provides zero quality of life.

I have been trying to make myself cry for about an hour now.  And I don't want to just get on you-tube and find some random video that is tear-jerking and use that as my way out of this.  I want and need to grieve the loss of my baby sister.  And, damn it, I can't cry.  Not today, anyway.  I want to pass through this grieving period in a reasonable time, and at a reasonable pace, naturally in my own way, but not delayed because of stupid chemicals that won't let me cry.  I am sort of abandoned on the grief highway and left there, not able to go in either direction.  I can't come out of it because well, there's deep sadness left for me to feel and process.  And I can't dive in to the deep sadness because my medicines won't allow it chemically.  I'm on the grief Exit ramp.  And I can't get there.

Maybe one day this week, I'll accomplish progress on this front.  I hope so.

I'm so grateful for the anti-depressants and their function of stabilizing my mood and masking some of the physical pain, that they are affordable and that I have found some that work for me without horrendous side-effects.

Here's to happy days.  Hoping y'all have them.

Grieving wishes

The thing about grief is that it sneaks up on you when you think you've finished with it.  Sort of like dust on furniture.  You can dust thoroughly and carefully, not missing any areas.  You can stand back and admire your work and feel the accomplishment.  And, at that very moment, the accumulation of dust begins to gather again.  This is how I live with grief.  It is ever present for me.  Today, my grief is for myself, not even about my latest huge loss, my Monica.  I simply went to one low-key social setting, and back home today but, for some reason, I found myself wishing that realities were different.  I kept thinking, I wish I could drive.  I never would have taken that corner so quickly and my body wouldn't have pressed so hard against the door.  I wish I could be the one to decide when to pull out in front of another car, using and trusting my own judgment.  I wish I could leave the outing when I wanted to, not when my loved one fetched me.  I wish I didn't have these wishes, but I do.

I wish I could do a different kind of exercise.  I am left with only "safe" options because my body cannot be relied upon to remain strong through any one event.  I wish I had somebody who would try another exercise with me, to just see if I could do it, thereby removing any danger for me and being there if I should need help.  I wish I could sign up for trampoline fitness classes.  They are offered and available just a few miles from my house and it sounds like GREAT fun, but, again, I'm being discouraged by my husband because it could be something which sends me into flare.   (I'm going to still go one day this week and try it for a while.  I will never know how hard or soft the bouncing is unless I give it a go, so I'm going to.)  I wish I weren't so desperate to find a fun, a truly fun activity to do.  I wish I could do exercises which I really feel building my strength and endurance.

I wish I could tolerate being outside in the sunshine for even a half hour each day.  Or, for even 10 minutes.  I wish I could walk the dog without having to get up at 6 am to do that, because of heat intolerance.  I wish I could leave for a dog walk with complete confidence that I will be able to make it home on my legs.

I wish I did not wish for things I don't have.

I wish I had independence and I could go see any movie I wanted at the theater.  I wish I could decide to go get a haircut and then DO that.  I wish I could FEEL progress in my life.  Any progress.  I wish I had enough financial input in my household to warrant my giving more generously to others.  I wish I could take handmade crocheted items I make to the people I make them for, and not have to put them through the mail or rely on someone else to ferry them there for me.  I wish I could see the expression on even one face of someone enjoying what I crafted.

I wish I could dust all these wishes away and feel just gratified with what I have, but, somehow, my season has turned again and I'm back at wishing.  I really, really wish I didn't feel this way this evening.

At this point, my therapist would say, "How does it feel to wish for so much and not have it, to wish for perfectly logical and realistic things and  have no expectation of getting them?  What is that like?"  Here is my answer.  "It feels ever so sad."  Also, "It feels heart-wrenching" is accurate.  Further, "It feels like I can't smile and like I can't think straight because of the grief."

I suppose right now, I am dealing with a deep loss at my core, my dear sister, the deepest loss I've ever suffered behind the loss of my own health and my personal identity.  And to have just the dust of my daily life settling on that void is really throwing me for a loop today.  I can't find a balance.  I have, unfortunately, found a hole.  I'm not in it yet, and I hope not to go down it, but, I do see it and I also feel its pull on me.  I wish that so, so, so much were different about how I am spending my precious time here in this world, in this body.  I really do.  And it makes me sad.  To not be sad about it would be dishonest, I think.  It would be denial, and untrue.

I wish I could feel and function normally again.  I'm even now through tears, thinking of what I could possibly offer to God as my bargaining chip.  Of course, I have no chips to play my hand with.  After all, He dealt my hand to me so, he knows I am holding a pair of deuces.  

Maybe I will be able to dust it all fairly swiftly, but more importantly, thoroughly, and move on through in a timely fashion.  Hopefully, I will not get any closer to the deep, black hole, for that is truly TERRIFYING, in case you didn't know.  I wish I didn't.

Because I've made it a point to end my entries on notes of gratitude, I am grateful that I have this venue to record my sadness, my wishes.  Now they are on a screen in front of me and I feel justified in feeling this sad.  So, now I will go to bed and I will have faith that He will bring me to tomorrow with renewed vision.

And it's bedtime in August

It feels like too much time has passed without recording any thoughts or events.  I'm not sure if that's true, but it feels that way tonight, so, I'm going to do the "stream of consciousness" thing and see what comes out.  Just finished getting ready for bed, so this might have potholes.   Here goes:

I have coped with quite a lot successfully recently.  And I think its important to recognize that.  Not to be too proud but just proud enough that I am aware of my growth and how my life is improved by  it.  I have been controlled by anxiety before and I have also lived in relative isolation because of my situation in society, but that's not me anymore.  Not at all.  Now, I rarely have fear.  And it is almost never a factor in deciding where to go or what to engage in.  Not to say I'm still not careful about what I undertake.  I'm just not afraid anymore.  I'm realistic.  And, I'm also much less self-conscious than I have previously been about wanting others not to hear me struggle to speak.  I am making a huge effort to bring more people into my life, and to keeping the quality ones there.  I haven't made this a priority before but, I want it to be more so.  I want to have more of a social network, and I'm actively doing something about that.  Which is lovely because, I not in a complaining mode, or even a problem solving mode, but an action mode.  It feels great in action mode.  I find that I miss this mode as much as I miss everything else.

My sister passed away a few weeks ago, and I am able to reflect on my relationship with her as everything I could have hoped for.  We forgave each other everything before saying goodbye, and now, I can feel her super-social influence in my life as I meet new friends often.  Her daughters carry on her smile and her eyes.  And I am so relieved to know that she no longer lives in that wrecked and ruined physical body.  And, I don't feel even a bit guilty about that relief.  She would feel it too, and would feel it for any of us who she loved.

I have begun several different hobbies and I think I want to stumble onto one which will be so clever and easy and inventive that I can market and produce a product which is healing, fun, healthy, etc.  I know it, in fact.  It's at the base of me.  I want to be well.  I don't want to read on discussion boards how others with my illness are so very very depressed.  That is so dangerous.  You can't know unless you've felt it, just how dangerous that is.  I want to discover something I can message them and say, hey, try doing this for a few days, it has really helped me.  Also, its natural, inexpensive, etc.  I am desperate to keep more drugs out of me.  I am continuing to strive to get and keep my body into a shape which is acceptable and sustainable as I get deep into middle age.  I had some help with the math recently and discovered that I actually am not even 45 anymore, I'm 46!  I have to get a grip on this because its only going to get harder.  Stupid sweet carbs.  Of doom.

I felt good during pilates again today.  It was my last one-on-one session and from here out, I will take mat classes for a couple months.  I came home exhausted and ate lunch and then went to bed, as I have every time.  And this time, I didn't wake up symptom-free, but I am feeling pretty good if I can be this cognitively aware at bedtime.  Lots of times I am doing well to form elementary sentences.

Have a looming sense that I should give the dog a bath tomorrow.  But, that's probably not going to happen.  It could but, I wouldn't lay down any money on it.

I'm so, so blessed.  I'm able to see what some cannot.  I'm able to hear what some cannot.  We all have special talents, as my 6-yr-old niece would say.  I'm not sure what my very specific talent would be in her eyes but, I hope it is along the lines of kindness.  I hope whatever it is keeps me close to Christ.