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» LymeNet Flash » Questions and Discussion » General Support » "All you ever think/talk about is your illness."

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Author Topic: "All you ever think/talk about is your illness."
TxCoord
LymeNet Contributor
Member # 9204

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I actually thought of writing this the other day before Silver went to the doc-in-a-box yesterday and got some ABX's.

When a lot of your day is taken up with: I can't take this with food, but that one has to be with food, but I can't take it within 2 hours of taking this other kind, which also has to be taken with food, but then I have to wait 4-6 hours after taking the last one before I can take the first one . . .

And let's not forget: I have to take this one before I eat and that one afterwards and then I have to make sure if I take this "one" I can't take any supplement, food item (dairy) for several hours after . . .

I am sure most of y'all encounter this. If I am somewhere else for breakfast, I tell people I have to take my "second breakfast" after finishing the food.

And lest I forget, there are meds I take that have to be in the morning at least a 1/2 hour before I eat - yet many popular sites say you should eat breakfast as soon as you can after waking!

Now mind you, all of this supplement/medicine/eating time must be done! It needs to be regimented!

Right, someone who has brain fog or cognitive impairments is perfect to set up a schedule that would make forecasting the Final Four or the NFL's playoff schedule look like a piece of cake!

So when you hear someone talk like that, invite them over, show them all (and I mean all - even it's repetitive throughout the day) of everything you inject/ingest/rub on - whatever - and ask them to write you a schedule.

--------------------
I have a good time wherever I go!

Posts: 665 | From Lost Wages, NV | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I hear ya, brother. My nightmare regimen is pretty mind boggling. It just got worse yesterday when I found out one med had to be taken differently than I've been doing it.

You find out so much more from fellow patients than you do from the doctors!

Good luck .. and hang in there! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Jordana
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It's all I think about.

I don't talk about it. I let other people tell me their stuff. That's working so far.

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Tincup
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Maybe you could try my plan dear one? After 20 years I said FORGET IT!

I did everything I was told to do, to the letter. If I had to wake up at 4:27 AM and take a pill, and an hour later to take another, I did it. I was right on exact the whole time.

I was convinced if I didn't follow all instructions to the letter I'd not get well. I wouldn't risk that happening.

And you know what- it didn't help one bit being so strict on myself. I still am sick, still have the original infections and am broke from all the "try this and that" stuff.

So now I take meds 2 times a day. And a minimum. That's it. I may not be cured (still), but I am no where near as miserable as when I did it the way I was told.

And I always take meds/supplements with food. Always.

To each his own, but the "rules" are meant for short term use on most stuff and there aren't even studies saying what will happen if doubling up or doing it some other way, so we don't know.

If a doc says to take something 3 times a day now I smile, go home and do what I can with 2 times a day. And it works!

Hope that helps you. At least something to consider.

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
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It's just Silverwolfi here, TxCoord has not been evaluated for Lyme Borrelia,and Co's but has been symptomatic since I've known him.

We found out about LD and Co's and what they can do, back in 2006. His first concern was for me, now he has VA for his medical provider,and as mentioned before they don't ackowledge LD and Co's.

He had some odd reactions to a bug bite while overseas[during Vietnam conflict], as I'm sure many Military service folk have experienced.
Imagine ,oh horsey-dervies,what if our govt. actually carried out their promise,and took proper care of the Veterans health and various Military personnel.

Sorry, I'm being cynical today,hope this isn't overly political. If we get to add more than Fish Flax and Borage products,to his regimen. I think he'd be taking pills round the clock.

Feels Like I already do, that doesn't look to change anytime soon. I am so glad LymeNet is here. Elsewise, we'd just about go nutso.

The other issue,is like so many other medical groups,insurances,HMO's etc. One musn't be a non-compliant patient [sleepy brain couldn't think of this word earlier on medical board].Altho' both of us draw the line about Statin drugs. No, nope,nu' uh' not gonna take them.

I'd better go for now, sleepy brain and replies becoming mini-novels.

Jus' Silverwolfi

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
healthywealthywise
LymeNet Contributor
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I agree and would also like to add.......no one understands the sickness/pain/fatigue we constantly go through day and night which are the REASON we have to take all of these meds!!

I just recently lost my best friend b/c when I told her I couldn't walk in the mall with her, she said, "we'll do it early in the morning". When I told her, I can't, she said, well, "I have a wheelchair and I'll wheel you around!!"

She just can't comprehend that it's not that I can't walk,it's that I feel so sick and dizzy and weak that it's not possible.

So I made the mistake of saying well, you have MS, so maybe if YOU sat in the chair and I got to lean on it and walk a little, we could try it.

She got angry at me b/c the MS has not affected her w/good treatment and saw it as an insult.

Maybe I just wanted her to stop talking and pushing me......so that's it for the last friendship after 50 years.

:-(


UPDATE: GOOD NEWS. FRIEND CALLED AND WE PICKED UP WHERE WE LEFT OFF....ALL GOOD~

[ 06-15-2016, 03:58 PM: Message edited by: healthywealthywise ]

Posts: 867 | From PA | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-
"All you ever think/talk about is your illness."

It's a 24 hour a day job, seven days a week to take care of the patient. And when the patient is one's self, no one takes other shifts.

Others might look at it in that way.

Who out there does not talk about their work, or vent when there are work stressors? Well, when work and body are one and the same, tell others you are just venting / process work matters as well as personal issues involved.

Your job is to tend for someone who has very serious illness. That's your job, even if it's to tend to yourself.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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It is a 24/7 experience. I don't think people understand that who haven't had to go through it. Seniors understand, usually, since they often live with constant health issues. And so do other permanently disabled people.

It's where you get to put your consciousness. If you're not compromised, you can put it elsewhere. I certainly did, for all the years I was fine.

When someone sprains their ankle or breaks a bone or something, then they have an experience like us, of having everything in their life revolve around that experience.

That's the kind of example I usually try with others, to find something that happened to them where they had to tend to their own health needs ahead of everything else in life.

And when they get that, they usually get depressed and ask me how I can do it. I then answer it's about trying to figure out how to put some life back in!

Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
bluelyme
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Like a flu x50 that wont go away...ny friend keeps saying shift your focus...its hard with blurry eyes and vertigo sweet t..i am devising a treatment plan where i can have a day off or make it managable ...last year when i felt like crap i wish i woulda went dancing ,out o eat etc etc...thanks tc ...thanks tx

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Blue

Posts: 1538 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
TxCoord
LymeNet Contributor
Member # 9204

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Keebler - that's a great analogy! Who, in their right mind, would work a job 24 hours a day, 7 days a week, 365 days a year with no time off, no weekends, no holidays, no vacation?

And Bluelyme, you also hit it on the head. If Silver ever took one single, solitary day off from all supplements and meds, she would be down the tubes and recovery would take months if not years.

Consider this (for the person dumb enough to ask the question "All you . . .") Silver is not getting better even with everything she is taking. She is holding on, tenaciously I might add, to her current level. (I'm sure all y'all know what I mean.)

--------------------
I have a good time wherever I go!

Posts: 665 | From Lost Wages, NV | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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