Today is one of those days that just drive me crazy. I hate days like today.
Lately, I seem to be having a lot of what I call, fragmented days. I just can’t seem to make any of the connections I need to make. I stand there at the end of the day and wonder how it is that I accomplished nothing!
If you watched me trying to plug in a power cord into one of those extension cords and I kept missing the connection, that would be a good visual representation of what I am going through.
It’s kinda like when you watch a movie and it gets stuck and then all of a sudden jumps forward a few seconds. I feel like that. I’m trying to accomplish something only to find myself unable to connect the dots and then suddenly doing something else, not really sure how I got there.
I get really grumpy on these kind of days. It’s very discombobulating to not be able to make the connections I am desperately trying to make. Friday’s post was incredibly difficult for me to write because I couldn’t connect my thoughts together, and then I had trouble connecting my sentences and on and on. I hate this.
And trying to remember what I was trying to remember. Well forget that cause I don’t remember. And it makes my head hurt! Ugh!
Sometimes, I just feel like a record that got stuck and is playing the same song over and over and over. I am so ready for a new song! Any new song would be fine on days like this one.
It’s one thing to deal with fatigue, pain, and even the cognitive issues like recall, but the inability to connect really sends me for a loop. I have been having this struggle for a few years now. They started about a year-and-a-half before I finished my Bachelor degree. It’s as if everything in my brain has become opposing magnets and so nothing connects the way it should. Can someone please tell me where my brain went? Gosh I would love to locate it!
I’m sure the stress I have been under lately isn’t helping either. My dad had a lung biopsy on Friday and is looking at possible surgery where a good portion of his lung will be removed as well as possible cancer. I am trying not to worry but it is in the back of my mind. Then the dog situation was stressful. And to be honest, I am really worried about the healthcare bill that our government is trying to pass. I can’t afford $5,000.00 a year in premiums and out-of-pocket expenses of 40%! Not to mention, I really wonder what this healthcare bill will do for those of us who have chronic illness.
I have already been on the receiving end of the ‘blue-pill/red-pill’ scenario that is touted by President Obama and I have no desire to repeat that experience. Needless to say, life stresses have found a way of creeping in to my space.
Anyway, I would really like to find my brain. Where ever it went, I wish it would return.
Determined to continue forward,
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Dear Dominique, I will be praying for your dad. Yes it sounds like
life has been giving you too much to digest and probably
“that is where your brain went” I triedto follow the health
care reform but it is toooooo looooong and tooooo complex. I guess
I’m waiting to see what happens to those of us on Medicare.
Your not being able to connect sounds like what I face with distractability or ADD – I can brew a cup of tea and
waiting for it to brew..along comes something else to grab my attention. Then way after I might walk into the kitchen and see
my cold mug of tea that has been waiting for me. It seems it is
always a visual that reminds me – oh ya the tea. It is like a disconnect from what I was trying to do. The thing that is a bit
discombobulating (sp?) is that I have days that are disconnected
all day long. Although my memories still hurt (I took care of
mom who had Alzheizmers (my spelling has gone by by with my brain)
I am thankful that although I lose things and spend much time in
search I do remember what the thing is used for. And that brings
me comfort that although my brain is a mess it isn’t like A
where you don’t just forget where something is but you don’t even
know it is missing! I pray your dad will be ok and that it will
continue to be ok with just Dekker and BE GONE ANYMORE LIFE STRESS
INTRUSIONS for quite a while so Dominique can find her brain again.
My prayers are with you. Patricia
Patricia – Thank you for your prayers for my dad. I found out this morning that they were able to complete the biopsy and get samples and we will have the results on Wednesday of this coming week.
LOL! I love that! “I am thankful that although I lose things and spend much time in search, I do remember what the thing is used for” That is a great way to look at it! I will have to ‘borrow’ that one from you and use it in my life! Love that!
Thanks again for your prayers. Dekker and I are actually doing pretty good. AND I think I have found a neighbor who will walk him a time or two every week!
PS I always think of something else. As I have been reading
your posts I thought along with the 10 Things in Research to
share about CFS – Really if I sat someone down to read some
of your posts I think you write so well about the experience
and how it affects you that they would “get” it almost better
than the scientific stuff that is mumbo jumbo to a layperson.
However, some of the language was clear enough to get the ideas
it is a disabling lack of energy. Quite some time ago, not
liking the name of CFS and not being able to remember research
facts – I thought to myself – most people are not familiar with
a lot of medical terminology – in layman’s terms I came
to two ways to answer what do you have, the simple one “I have
MY BODY CANNOT MAKE ENERGY DISEASE” and a little more scientific
“I have a neuro-immune disease” If they ask what is it called
we are still stuck with the terrible “CFS”
Patricia – You got that right. I hate the name CFS. I always say I have CFIDS. AND that list of the 10 discoveries will now go in my purse.
For me that list shows that it isn’t just our energy that is affected but most, if not all, of our organs. I often wonder what the delay is in trying to figure out the cause? Hmmmm…
Oh, and that perserverence thing really works. Simply by stubborn
peristence I’m able to get into easy/ and some of the more
difficult BLOGS. Thinking I could even become a Blogger! but how
boring my Blog would be as I don’t have the knowledge of how
to make it visually intersting. Now I must really shut up!
Patricia – See, there you go! You did it…or are doing it! Whoo Hoo! Have a great weekend! I am sitting in front of a roaring fire watching the snow fall…in March no less! Oh well….I need to take it easy anyway, huh!
Hi Dominique
I wanted to thank you for the comment you left on my blog where you told me you saw Jesus in the operating room with me holding my feet until it was over. It has given me a better sense of peace…you are the 2nd person to tell me this and another friend told me to take all those praying for me into the operating room…visualize them in a circle around me. I know that my life is in God’s hands and there is no other place I would rather be.
Now, I hope and pray that your brain reconnects soon. Let go and let God with all the world’s stresses…Nothing is outside of His control.
Gentle hugs
.-= Renee´s last blog ..Saturday’s Scribbles =-.
Renee – I’m glad that helped you. I have been pondering for days whether or not to share that with you. I’m excited to see what God is going to do for you!
So do I!
hi dominique
how are you?
i sensed a bit of tension and anxiety in your post. Please calm down a bit and get some rest. Remember you need your physical mental emotional and spiritual strength please.
you take care.
God Bless
p.s. i agree with your last email and would go on with your idea.I will send an email shortly
.-= ayo´s last blog ..50 Ways To Have A Good Time =-.
Ayo – I have to be honest and tell you when I read your comment I had to step away from it for awhile to gather my thoughts.
I realize that your heart was in the right place when you told me to “calm down a bit” but I found the comment inappropriate and hurtful. This blog is about the good, the bad and the ugly when it comes to CFIDS/FMS. What you sensed in my post was my frustration at not being able to get my brain to work. I was having a very bad day and I chose to be honest about it. That is my goal here. Every day is not a good day, nor can I always have a positive attitude – although I do try to have one on most days.
Sometimes, the constant battle to overcome every day wears on me and I get grumpy or frustrated. I allow myself that privilege and that right, because it is through being real about what I am dealing with at any given moment, that enables me to process it and move forward.
Although I am sure you did not intend to disparage my struggle, it felt that way to me. CFIDS/FMS is not an illness that I can just think myself into being better. That kind of thinking has proved harmful to many of us who are struggling with these illnesses. I am not having a bad day because I became tense, frustrated or anxious. I became frustrate because my body wasn’t working and I was having a very difficult and challenging day.
Part of my ability to get where I am today and to continue forward with hope is to understand my struggles, process them, find a way to deal with them if possible, and move forward. Sometimes, when there is no solution, it becomes very frustrating and difficult. At no time should I be made to feel that my illness is my fault. I didn’t ask for this, but I am choosing to do the best I can with it.
Again, I realize you probably meant well, but I am tired of being told that it is my fault because I am anxious, frustrated, tired, tense, in pain, whatever. It isn’t. None of this is my fault.
I think I do very well considering. So IF and WHEN I have a bad, I allow myself to have a bad day and I don’t feel bad about it. THAT is what was in that post.
I always appreciate you comments and I hope you understand what I have written.
I’m sure the delay in finding the cause of CFIDS is MONEY and
thatonly in the very recent moment has our disease been validated
by the past twenty years of research. If you have ever read
Osler’s Web it answers the question too; and as well as the fact
that CDC or was it NIH rerouted monies for CFS into other programs.
Lastly our disease isn’t consider one of the big killers like
cancer. I have often wondered if my death cert will state “cancer,
heart disease” and if I could shout out from heaven I’d say the
bigger killer was the slow kill of CFS – cancer or whatever was
my ticket to heaven. In other words because CFS takes so much from
us we see it as the “enemy”; however I not in a hurry to have
one of the big ones. Which really makes me think about Renee
would probably isn’t feeling this way at all. She has so much
to live for — that loving husband and large family that I pray
cancer has no power over her. I’m praying with you and everyone
else for her surgery on March23rd. If you are reading Renee
know your prayer circle is growing daily. I know you would rather
live many years inspite of CFS/Lymes than to leave your family.
Patricia – I, too, have read about the monies being rerouted. And your take on this being about greed…well…I can definitely see that as a possibility as well.
Thank you for joining the many people who are covering Renee with prayer!
You know something. I think you know more about CFIDS than you give yourself credit for. Just think about it. You live it everyday, thus, you know it intimately.
Dear Dominique,
I hope the news about your Dad is good although waiting until Wednesday will be hard. I know that feeling of fragmented brain. It’s awful. I hope it passes soon.
Toni – Thank you! You are always a ray of sunshine! Thanks for your kind comments about my dad!
Oh, I know this disconnected thing! It’s one of the worst things about this illness. There are days when I have a tune, or a thought, or an image that gets stuck. I can’t get started or finished and even just being is difficult. It’s on those days that the worries and the anxieties circle but you can’t bat them away with meaningful activity.
If I find your brain, I’ll stick it in the post if you promise to do the same with my mojo!
.-= Jo´s last blog ..Overdoing It =-.
Jo – Okay! I’ll let you know when I discover where it went!
Hi
Yes, you certainly can put my name on your church prayer chain. I am feeling so thankful and in awe of the number of people and prayers being lifted by those who love the Lord. WOW!
I did see Patricia’s comment for me. Patricia was part of the large group of people who recieved The Encourager newsletter I wrote for 5 years for chronically ill Christians. I had to stop due to my reactions to ink and poor health. I am so glad you is connecting with others now online.
Again, thanks Dominique. Your comment about Jesus in the operating room truly lowered my stress levels and I keep going back and visualizing that myself when I start to get anxious. I know that Tuesday is in God’s hands.
Hugs
Renee
.-= Renee´s last blog ..Saturday’s Scribbles =-.
Renee – You welcome!
I had no idea that you wrote a newsletter as well! Wow. It sounds like a newsletter I would have enjoyed.
Hip Hip Hip Horray for all of us – YOU Dominique – Who with courage,
perserverance, persistence and HONESTY about the struggles of CFIDS–continue to support and give understanding and encouragement to each other.
Boy my writing is disjointed too — ideas comes through I hope -
but reflect the state of my congnition. What I’m trying to say
is I once thought about how I wish my brother or daughter would
get in their heads the idea of saying to me “Wow Pat/mom I’m so
proud of how you have coped all these years with such a tough illness”
Well that is what we are here for to say to each other — I’m proud of you Dominique and I’m proud of me. I’m so glad you are honest.
I completely
recognize that the best way to cope well is to be as positive as
possible and when we run out of coping for a while or have too too
much going on – it is that HONESTY – that I value – that telling
“how it really is sometimes” Not staying stuck in the mud hole
but sometimes slipping into the mud hole until we just get up
and get going again.
I’m praying that the result of your dad’s biopsy this Wed is
positive. That would do your heart so much good and relief.
Can I share a little thing that happened today. It so says how
CFIDS is a constant part of daily life. I just had to take Sammy
out for a nail trim. Not a job I like because he is old and
snappy and grumpy and doesn’t like the car ride and gets so
nervous. And the little trip is tiring just driving. But
my brain just bleeped out. I got Sam into his car harness and
put him in the car. I had put my purse on the kitchen counter
with my little “go phone” and sunglasses. Well I guess because
my attention was so on Sam and buckling himn into the car -
that I got to the groomers and Yep no purse. I was out driving
without a license and no money. My fatigue level rising with
the littlest bit of exertion/stress – I just blurted out to
the groomers “I left my purse at home I don’t have my money
to pay. Can I leave Sam here you can trim his nails and
I’ll be back with the money” Well, the lady was so kind and calm
she sat me down and trimmed his nails and said just go home
and bring back the money sometime today. On second thought
perhaps they thought I was ditching my little elderly dog?!
He isn’t very good collateral. But worth gold to me. Anyway
I got home and was so relieved that they already cut his
nails and that I did not have to drag him back there.
I told myself well even well people have these incidences.
I just wonder if they do and if I blame everything on CFIDS? I end up thinking that because these types of things aren’t rare at all!
This time a visual cue (the purse and phone on the counter)
did not catch my every fleeting attention span.
I think I
need a blog. Now I feel guilty that I am just adding to your
fatigue by giving you so much to read. There are so many
good Blogs I don’t know what i could add that would be unique
I kinda figured out how you do it – by going to google or
wordpress and you can start a blog with a
“ghost image” no photos, no lovely pictures, no links just
a lot a typing/chatter. But I think I would not get many
followers.
Now I must really shut up as I’m embarrasing myself.
God Bless you Dominique – I’m Proud of you! Thanks for being
HONEST and positive and grumpy and whatever you want to share.
I have imagined that all the lesson we have learned from
chronic illness and if we were suddently healed – We would
be the best adjusted people in the whole wide world with
great perspective. At least we can claim together that this
darn illness isn’t making us bitter but making us better.
That is something to claim with a self-pat on the back.
And here is a soft soft pat on your back – Congratulations
for doing such a good job with what life has dished out to you.
Patricia – “I have imagined that all the lesson we have learned from chronic illness and if we were suddenly healed – We would
be the best adjusted people in the whole wide world with great perspective.” I would have to agree with that statement!
Thank you for the congratulations!
I’m glad that you “appear” to be a little less lonely sounding today!
hi dominique,
how are you?
i hope you are feeling much better today.
i apologise if my last comment upset you or possibly any of your readers.
It wasn’t intentional and I didnt mean any harm please, i was really concerned.
Once again I apologise
Have a lovely night
God Bless.
.-= ayo´s last blog ..Personal Development Roadblocks =-.
Ayo – No problem. Were good! I was doing better until today. Today was a rough one but I always remind myself that new mercies come in the morning!
I hope you have are having a great week!