Gah!

This is a reprisal from a an entry dated February 26, 2011.  I am repeating it because the same thing happened to me today:

Something I might not have shared with you in the past is that, in the past, I have suffered from crippling panic attacks. It has been a while since I feared them but, this past week, that has changed.
Out of the blue, this past Tuesday I had a full blown attack. It popped up, seemingly, out of nowhere. I was so thankful that Isabella wasn’t with me as I have no idea how she might have reacted to her Booboo freaking out.

What does one of these attacks look like for me? The pressure in my chest makes me fear a heart attack. Sometimes some pain in my left arm almost convinces me. I tend to feel very hot. I believe I said out loud, “Oh, dear God, help me!” I left my seat in the living room and walked to the kitchen where I held on to the counter for dear life and remembered my training from the Claire Weekes book Hope and Help for Your Nerves .

Self talk:
You are having a panic attack
You have survived them before.
Accept that you are having this panic attack
Your heart is a very strong muscle and it will not explode.
Breathe and float through it.

Sounds too simple, right? Well, it took years for me to be able to work through this. Still, it is a horrible experience.

Why am I talking about this? Why do I talk about most things? To get the word out that we are not alone with our ills and heartaches. I could write about only rosey, wonderful things happening in my life and you could say, “Oh, what a lovely life she has!” Well, I do have a pretty good life but it is not all flowers and butterflys! It has ugliness in it. However, I always have hope.

Hope. How glorious is hope?! I know that this earthly shell is temporary and that I have a heavenly home being prepared for me. When I get there, I will not have panic attacks or fibromyalgia or weight issues. My Isabella will join me there and her autism will be left behind (Or maybe not because her autism is part of what makes her so special). My grammy, whose Parkinson’s stole her expressive face, will greet me with her smile. Oh, what a wonderful hope!

ZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzz

Anyone who knows me knows that I think Sunday afternoon naps are delicious. Actually, most naps are delicious; even the, "I'm so sick I don't have a choice but to sleep," naps are delightful.

I don't know why "z" is a symbol for sleeping - maybe it is what people think snoring sounds like? (Yes, I have woken myself up with a little snort of a snore - I admit it. Himself says he doesn't remember the last time he heard me snore - good answer, Himself, good answer.)

Getting back to sleeping, I never anticipated having a chronic condition that would cause me to have constant fatigue. Maybe God's sense of humor gave me a way to be able to nap without having guilt about it? I have tried to fight it but it fights back. If I don't nap when I need to, I wind up flat on my back with pain. Blessedly, my hubby is kind about this. Others, like my children, don't get it unless they are reminded (conditions that are invisible sometimes make people think you exaggerate or fake it).

Anyhoodle, by the grace of God, I am able to cope and I get to nap! ZZZZZZZZzzzzzzzzzzzzzzzz.....

The A to Z Challenge has been a hoot. I'm so glad to have had this experience and to have met new people. Maybe I will be more regular in my blogging....let's hope so!

Thankfulness = Contentment

When I am thankful, I find it difficult to not be content with my lot. I have a chronic illness. I am so thankful it is not a degenerative illness. My granddaughter has autism. I am so thankful she is able to hug and be hugged and able to communicate as well as she does. My husband has to wake up for work at 2:30 AM which is really rough on his system. I am thankful for his health and ability to work. All of my clothing is either ill fitting or out of fashion. I am thankful for being clothed. Some of my friends are so hard to keep in touch with. I am thankful for the time we have spent together. We have only one working car. I am thankful for the one that works. When I have a complaining spirit, I need to remind myself to be thankful. Have you tried this? g I do not know why blogger isn't showing paragraph breaks, but I will be thankful that it is publishing at all...

A New Quest

Just this evening, a friend and I were discussing how our lives are going to change over the next year. She will finish homeschooling her youngest child and will start. I am trying to downsize my belongings in anticipation of moving.

We are on quests; searches for what is to come next. My friend will probably continue her education. I haven't a clue what is next for me.

Because of a chronic condition, I am unable to work outside the home. Because of this same condition, I am unable to go back to school, which I would very much like to do. I never know from one day to the next if I am going to be able to drive a car or need a nap. Today, I slept an extra six hours after seeing Isabella off to school. There was no choice; it had to be done.

One thing I do know is that God has a plan for me. Right now, I don't know what it is. However, I know it will be a great ride!

Medical Care

When an elderly friend of ours was visiting his son in Canada, he became ill. His son, a medical doctor, called his dad's doctor in the States. He put his dad on a plane and made sure he took a cab directly to the hospital where his doctor had arranged for his admittance.

With socialized medicine in Canada, our friend's son knew he would be taken care of much more quickly in the States. Our friend is now recuperating from open heart surgery. Do you have any idea how long that would have taken in Canada? A long time; probably longer than our friend had to live without it (he was given only a couple of months without surgery).

Is this really the route we want America to take?

What in the World Did I Do All Day?

As expected, I didn't get a lot of comments on my last post. That is fine with me. I have to be at peace with God.

Lately, I've been wondering where time is going. I look around and see a house that needs vacuuming and dusting and straightening out in a big way and wonder why it hasn't gotten done; why I can't get it done.

As I sit here typing, I realize I could be doing the quiet parts of these tasks (Himself goes to sleep quite early because of his early shift) but here I sit watching tv and keeping up with my "social networks."

Where did I go wrong? Let's go over the events of today:

6:00 Woke up before Isabella's arrival at around 6:20. Made tea and read my Bible.

6:20 Made Bells' breakfast, prepared her snack for school and got her washed up and ready for school.

7:50 School bus arrived and I blew kisses to my little love. Instead of going back to bed, which I usually do for a few hours, I got ready for the day.

9:15 Started driving to my Weight Watchers meeting and returned the call I missed fifteen minutes earlier from my mother-in-law. Her defibrillator had gone off (for the second time in three weeks) and she needed to go to the doctor. My nephew drove her there and I skipped my meeting and took over at the doctor's office (this has become my part time job).

11:30'ish At the hospital to have the pacemaker/defibrillator "interrogated" and found that the doctors feel an increase in medication will hopefully do the trick.

12:'ish Got Mom home and made sure she ate and drank a cup of tea. All she wanted to do was sleep so I left for....

12:45'ish ...Weight Watchers weigh in...yea! All is good. 47 down and three to go.

1:00 Met a friend to pray for missionaries who are in creative access countries (countries where missionaries are not allowed)

2:00 Nap time for me.

4:40 Emerged from nap and spent time with Isabella and did absolutely nothing else of significance.

I could have gotten things done after my nap but the energy wasn't there! Even thinking of doing anything makes me cringe inside.

Maybe some day, God willing, I will be blessed with energy. What I am thankful for is the ability to be do what I CAN do.

When I had to go on disability years ago, I never thought it would be for so long. The original reasons for this are still active and have intertwined with fibromyalgia. The times I am needed the most seem to fall on my "good" days and for this I am grateful.

What's the saying, "Man plans and God laughs?" Ha! So true. I am so very blessed.

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A Walk in the, uh, College Campus

Yesterday, we walked for Autism Speaks. The organization is not perfect but it a big help for families dealing with the autism spectrum.

As the team captain, the weeks leading up to the walk are stressful to me. I did nowhere near as much fundraising through sponsors as I did last year as I was paralyzed by what I saw as the immensity of it. It really isn't a big deal but, in my mind, it was of gargantuan proportions.

Last week, not only did my fms flare but my ibs decided to come along for the ride. Ugh. I am so thankful that I was able to nap and function well enough to do what I had to do.

Our team Isabella came out beautifully! The girl wanted pink but I put my foot down and we settled on orchid (pale purple). A couple of the guys were not thrilled but real men do wear purple!

How wonderful it was to have both our side of the family, Isabella's dad's side of the family and dear friends join us in support of our girl! Even my mother-in-love, who has issues with her legs, joined us in a wheelchair for the second year in a row! It was wonderful to push her along the 1.6 mile route.

After the walk, most of us broke bread at a local eatery and continued our fellowship and good time. Our girl, Bells, did so very well. We couldn't be prouder.

Will we walk again next year? As long as children are newly diagnosed, we have the strength and we are able, yes. Will I get all worked up? Probably. Let's just hope I start earlier and get more productive with corporate sponsorship!

blessings to all, g

The Spoon Theory

This was sent to me via email and really hits the nail on the head. Just because a person doesn't show overt symptoms dosn't mean they aren't hurting. Let me know what you think.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

New Routine?

Being someone who doesn't like change all that much, the fact that I have been thinking that I need a change in routine is a bit odd. It's not that my life isn't fulfilling because it is. It would be nice, though, to have some choices.

One choice I would make would be to be fibromyalgia free for a while. Usually, I don't even notice the pain I live with daily. It is just part of my life and I accept it. However, when I have a night like last night, where the pain woke me so often, well, it would be nice to sleep uninterrupted. Also, I would like to be able to make plans without having alternatives planned just in case the fms flares up.

Another choice would be to have the concentration to go back to school or hold down a job. FMS works havoc on one's concentration. Just the thought of going back to work causes anxiety deep within me.

I know that every school day I need to be available to pick up Isabella at 2:30. Do I have a choice in this? I could refuse but who would do it? Today, it would have been lovely to take a nap to make up for last night's lost sleep. Yet, here I sit, with The Little Mermaid on for the fifth time in three days.

A friend recently wondered out loud what her life would have been like had she taken the path she originally planned. We won't ever find out, will we? This is not the life I planned either. However, we are where we are and can either dwell on the past in times of doubt or press on and make the best of where our choices have led us.

Sometimes overwhelmed but always blessed. I suppose that sums up my life right now. That's not too bad, right?

Ugh

I had just about completed typing out an entry I had been working on in my head when it disappeared. I had even saved it to draft halfway through but it is gone!

When I get up the strength to rewrite it (my fibromyalgia has me sleeping a lot), I will share with you what is on my mind. In the meantime, thanks to The Simple Woman's Day Book for the following questions:


FOR TODAY

Outside my window...rain to bring out the crocuses, daffodils and tulips just waiting to erupt into spring song

I am thinking...that I hope I get a restful night's sleep so I can be a good overnight guest to our friends

I am thankful for...people from the autism family who reached out to me today when I expressed a problem with the school system Isabella is in.

From the kitchen...dishes washed, dishwasher emptied, floor needing washing

I am wearing...pajamas and fuzzy purple slipper socks

I am creating...a ruckus for the school system if they continue to try to take away services from my precious girl

I am going...to stay with friends at the shore just to get some couple time together

I am reading...my Bible - been too tired to start a new book

I am hoping...to get throught this bought of fms so I can get to work

I am hearing...a rumbling in this country that is going to destroy it and/or bring revival

Around the house...so much to do

One of my favorite things...a nice cup of decaf coffee when the mood strikesA few plans for the rest of the week: get moving!

Here is picture for thought I am sharing...Isn't this pretty?!
Have a wonderful weekend, all. You bless me. g

Feeling Faint Falderal

Not really. Just very tired. The fms has knocked me for a loop and all I want to do is sleep. It could be much, much worse.

You know how each occupation or lifestyle has its own humor? When I worked in a hospital, the jokes we told there did not translate into the every day world. People thought it morbid. Same thing with ethnic jokes, senior moments, etc.

Talking with one of Isabella's schoolmate's mom's, M, I questioned her about what she thinks is acceptable in the world of people who love someone who has autism. I told her that I almost wrote out the comment, "At least, with her autism, Isabella always has someone to talk to." (see http://conquerautism.com/blog/?tag=scripting) M laughed and agreed that others wouldn't get it. As a matter of fact, they might think it cruel when it is just the statement of a gram who loves her grandchild more than she could ever think it possible to!

There is a site that sells t-shirts such as "Proud Grandparent of an Autistic Granddaughter." Another shirt states, "Autism rocks! And flaps and spins..." Would you be apalled to see that last one? M said that is her favorite! My daughter is afraid to wear that one because she is afraid she might hurt the feelings of one of the other parents at school.

I guess it is a matter of what one is comfortable with and the spirit in which they present it. For some, one of those shirts is the same as the having an autism awareness magnet on their car. Still, maybe I ought to stick with something like this: Or, more importantly, this:

Do you work in a field or have an interest where the humor related to it doesn't translate to the rest of the world? See above.

Other than sleep, how to you get beyond fatigue? Going for a walk might work.

Any plans for the weekend? My greatniece is being dedicated on Sunday and I am attending the party and service. It will be good to have the family together.

Are you sad because summer is waning or are you looking forward to autumn? The only sad part of summer ending for me is the shortened daylight hours. Other than that, bring on the crisp, cool days of autumn!

Sing or hum? Used to be sing all the time but I find I don't know as many words as I do tunes these days so humming it is!

Hoping that all is well in your world, g