Thursday, April 11, 2013

Comprehension - or the inability to understand....

I woke up this morning probably about 2 am although I'm not sure since I lay in bed until 3:09 when I finally got up and got a glass of water, went to the bathroom and then made the mistake of kicking Lily off my chair so I could check my facebook (why bother - the only ones awake on there are on the other side of the world - or fibromyalgia related and you can literally get lost in some of the "do you have trouble with" or "have you noticed" posts.

So, this morning I see a simple 8 word sentence that sucked me in.....

Question: "How do you cope with concentration issues?"

There are 609 comments, 69 shares, 340 likes and oh my.... what a relief it is!

Here are some of the comments condensed WAYYYYYY down for those of you who don't know much about Fibromyalgia.... it's an eye opener for sure!

Sharon says: "I'm going to give up the secretaries position I hold for my chapter because of this. It's very embarrassing to not be able to carry on a conversation with "normal" people when I can't remember squat. I often have a question but by the time it's my turn to talk... I forget it."

Roxanne: "Hahahaha, I don't cope, I suffer. I don't know any way around it. Make a list, lose the list. What next?"

Cori: "I obsessively make lists, only study in complete silence and use a day planner. I just wish I had more time in the day... I constantly oversleep because I am exhausted and that cuts my days so short. I never get everything done. I hate how much fibro affects my life. The pain is bad enough but the exhaustion and concentration issues SUCK. Oh and I lose EVERYTHING."

Susan: "When cooking from a recipe.... I re-read it a million times! Can't remember anything!"

Dana: ".... when I am cleaning my house I go in circles because I can't stay on one task..."

Donna: "...I don't do anything I enjoy anymore because I can't concentrate. As far as chores, I do a few each commercial if I'm not in a bad flare. I have my bills withdrawen automatically. Keep appts on my phone and have 2 alerts: 1 day before and 1 two hrs before. I always make appts in the afternoon in case I'm in flare and can't sleep."

Darla: "...noises and concentration are the hardest for me to deal with. I say "thingy" a lot. LOL"

Kim: "I'm desperately trying to not lose my job because of cognitive difficulties. Any advice would be so appreciated."

Patricia: "... I point a lot. I can picture what I want to tell them but the words will not come. ... Have to laugh, don't want to have them see me cry."

Kelly: "Sometimes I just feel dizzy and the headaches don't help. Find myself forgetting my point in mid sentence and that is embarrassing."

Deborah: "I feel unorganized, stressed, frustrated, angry, depressed. I can't hold down a job that is too complicated. My brain gets like jello and I feel overwhelmed. It sucks.... it's something that's hard to control. My mind always feels spacey."

Laurie: "reading these comments makes me remember I'm not crazy, and it will be okay if I always do the best I can even when my best changes from day to day, and if people want the best out of me, they need to deal with it."

It truly is amazing how encouraging it is to hear that others have the same struggles I do. Isn't that terrible? If you are truly interested you can read more of the comments and I'll post the link at the bottom of this post. Here is what I shared... it is so hard to share it when you can't speak well enough to express yourself and yet sometimes it helps to write it down....

I decided to try to condense some of these comments and do a post so my readers, friends & family can get an idea of how completely frustrating this illness truly is - it's not the pain, achiness, stiffness - it's the frustration of not being who I truly am!

Me: "As I read this I find I'm very relieved that I'm not the only one. I can't focus on anything anymore. I own a daycare and train the kids from the start to use their inside voices and keep it down (when inside of course - outside I could care less). Noise often feels like someone is stabbing my ear drum with a screwdriver. It hurts.

Add in the inability to carry a conversation anymore - I don't talk except with a couple of friends who are very, very patient with me & the kids who don't judge me or get frustrated with me. (Altho people say they don't notice that I struggle with my speech). After being a heavy, heavy reader since I learned to read - about 4 years ago I noticed that I had quit reading nearly 100% because I couldn't understand what I was reading anymore (now I just fall asleep when I read) - I started blogging and that got me reading again and now I find my speech and comprehension has really improved (so many people are surprised to hear this).

I'm still struggling the worst with comprehending what others are saying - particularly if they aren't facing me. People have to repeat so much because I  just don't get anything people are saying anymore. Noise from behind makes me want to pull my hair out - between the pain and the feeling of ants crawling over my arms and shoulders and if their whispering (which is what most of what people who are talking behind me sound like even if they are not whispering - not sure that makes sense).

I've learned to not fret over the small things because in the end it just doesn't matter - I just focus on one thing at a time. I don't finish any of my projects - sewing something? Don't bother unless it's doll clothes for the daycare kids. The instructions just don't make sense and I just can't focus on it long enough to finish it. I've become a great collector of patterns - and I dream and imagine what it would be like to do the project and enjoy the final product - but it rarely happens.

Through it all - I try to stay focused, positive, stick with my few friends who support me, encourage me and don't... sorry forgot what I was saying... oh yeah, judge me.

Finally, I'd like to encourage those of you who are not fighting this disease (yeah, they've decided it's a disease recently - I think) but perhaps know someone that is. The ultimate frustration is feeling stupid, unable to understand or comprehend the spoken or written word, dealing with the environment (sound, smell, heat, cold) and the bone deep exhaustion - and wishing we could just go back to the days when we could function.

Please try to encourage those around you fighting this illness - drop them an encouraging note, give them a smile, don't encourage complaining and let them know what you appreciate about them and their daily struggle to succeed and survive. Because that's what it is... it's survival.

If you'd like to know more about this conversation (I'm just barely touching the surface of the comments).... here is the link on FB:

Disclaimer: I'd like to point out that many of the comments above are condensed from individuals who have Fibromyalgia. I have tried to keep exactly what they said with corrections to spelling only to make it easier to read. Some parts I did cut and used this: (...) so I can stay on task and focused on the subject. Thanks for reading!

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