Author Topic: Consumed...  (Read 2922 times)

ynevar

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Consumed...
« on: January 20, 2011, 11:30:55 AM »
It seems for almost a year I have been consumed with trying to find out WHAT is wrong with me, HOW to fix it.  It seems like I can't think of anything else, most days.  I am reminded by my pain, appointments etc. that I just don't feel good.  I have to make a conscious effort NOT to talk about it or hurting.  I know that everyone in my family is tired of hearing it.  How do you all deal with this?  I feel like I am losing my mind...

I want the old me back and I know it's not going to happen...

-Y

irish

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Re: Consumed...
« Reply #1 on: January 20, 2011, 12:20:21 PM »
I am wondering if you got sick suddenly so that the effect of your illness is much more intrusive. For me it was a matter of not having very good health for many years. I started having problems in the 1960's and it just continued to pick at me. In the early 1990's it got worse and by mid 90's escalated. I ran to doctors for years with ailments. I wasn't diagnosed until 2003 after I had to quit work.

I had literally worked until I could hardly walk anymore and felt ill all the time plus had many, many infections. Sjogrens diagnosed first and then 3 years later after many more serious health issues diagnosed with myasthenia gravis, severely low t-cells and Hashimotos. Had already been diagnosed with BUllouw Pemphigoid. All I know is that it was such an insidious attack on my body that I just got used to always feeling ill.

My main goal in life was to take care of my family and my home and be able to work. I did not have a social life for many years due to exhaution, pain, nausea, infection, chronic fatigue due to sleeping only 3 hours at night, etc. It was endless.I just did what I had to do to exist. No one outside of my hubby knew how sick I really was. Some of the people at work could not believe that doctors wouldn't listen to me. My co-workers could see how ill I was. There were many days that I hardly knew anything besides what was in my face at the moment. Really hard thinking and doing my job but I made it through. I always thought that fatigue was mostly what was wrong with me.

I quit work, never to work again and became eligible for disability about 6 months after diagnosis. There is no magic formula to making it through this. You just suck it up, take a deep breath and do what you have to in order to keep yourself as healthy as possible. Maintaining your health becomes a very important part of your life.

Make sure that you keep track of your illness and have documentation,etc of ailments and doctors notes that will substantiate your issues even if your issues don't have a disease tacked to them. Good luck. Irish ;D

cremer

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Re: Consumed...
« Reply #2 on: January 20, 2011, 12:39:03 PM »
I'm the same, I've been off sick from work for nearly a year now. So I've had loads of time to surf the net and look up whats wrong with me. As everyone knows self diagnosing can be a minefield.

My family have been very supportive but I can tell they are pretty fed up with all my moaning and wondering what new disease I will have next week  ;D

babycakes

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Re: Consumed...
« Reply #3 on: January 20, 2011, 12:48:55 PM »
i completely understand where you are coming from.  I had been ill with various things too over many years and it was only when i had my son 3 years ago things really kicked off big time.

Just because i had been ill for years, having a name to it, didnt help really, it just made me more worried and yes i used to  (and still do) search the internet looking up new symptoms, increasing symptoms etc etc.  It is hard to accept that this is the way i am going to be now for the rest of my life and living with the uncertainty of how and if it will progress is very hard.  Particularly when you have a young child.

I have found counselling to help and much as i hated to, anti depressents, as i realized i was just too anxious and depressed dealing with the day to day reality of having a chronic illness to cope. 

Over time, i have learnt how to manage my illness, and the more i educate myself, i feel more in control of my treatment now which i think helps me to feel more happier.

I also understand how it feels to know everyone must be tired of hearing me moaning about my various ailments and not be up to doing things sometimes.  I try keep alot of it to myself and just take each day as it comes

annie

CAT1962

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Re: Consumed...
« Reply #4 on: January 20, 2011, 01:04:17 PM »
We are in the same boat. I constantly Google, talk about , etc. I know people are sick of me. (I have told my family and 2 co-workers.) I cry all the time. Finances are stressing me out, because I have all of these Dr's bills now, and 4 kids to take care of FIRST. It seems I have a new "symptom" all the time. Today, I noticed that lately my mouth has been burning after I eat, even cereal with milk.


I have been hacving test after test. I am putting them all in a  folder, googling what each thing means, lol. Keeping busy with it is the only thing I know that will help, because my Rheumy and Neuro certainly don't help much. Interpret blood work, but when I mention DOCUMENTED (on MANY sites) sign, they say, "Oh, it's nothing." or "That's something else". OK, WHAT else??? LOL

Take care, and ALWAYS ask here. A great bunch of Sjoggies here.  :D

JannaLee

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Re: Consumed...
« Reply #5 on: January 20, 2011, 01:17:28 PM »
I think we MUST research our illness to effectively advocate for good medical treatment.  Many of us here used "google" to research our symptoms and then asked for testing which led to diagnosis.  If I had not done this, I wonder how many years before a diagnosis would have occurred and treatment started?

And along the same lines, this support group is invaluable for discussion of medications and their side effects.

It is good to be "consumed" and maybe will save your life!

I know exactly how you feel about "losing your mind" and wishing for your "old self".  I know EXACTLY!  From what I understand it's part of the grief/acceptance process.  I'm a long way from finishing myself.

Best to you!
Janna

« Last Edit: January 20, 2011, 06:03:53 PM by JannaLee »

tired of it

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Re: Consumed...
« Reply #6 on: January 20, 2011, 01:56:38 PM »
Ynevar,

I would like the old me back and even though my hubby is supportive I know he tires of this.  I feel so bad that I finally found him a hobby and am pushing him to get out with others that can do things since I cannot.  I think the hobby will stick but I think he feels guilty doing things with out me but I told him I feel ever so much better if he will just go and do a few things.

This board has saved whatever sanity I have left because at least most understand how it is.  I can learn from others some things to try to make things better.  They may not all work but sometimes something will.

Friends generally can't quite understand.  Oh, they say they do as they ask you do something you know you can't do.  They also don't understand that I cannot make plans as I don't know if next Tuesday if I will be ok  or not able to move.  

I spend most my energy trying to do things to make myself better or do something for my hubby, but there are times I'm too tired to cook so I try to cook double batches so I can freeze one.   I guess you find out who is really a good friend and who is just a fair weather friend.  Pretty tough for me at times.

On the other hand, I think this can make you more compassionate and really appreciate your good days.

As far as acceptance,  haven't learned that one yet.  I have learned if I overdo it costs me more than if I pay attention to my body, although I still overdo at times.

I admire those that are able to handle this better than I can.

I wish you the best,

Lizzy
Me too Lizzy,, I admire them,

dainbramage

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Re: Consumed...
« Reply #7 on: January 20, 2011, 03:11:51 PM »
You sound like me.

carimeaway

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Re: Consumed...
« Reply #8 on: January 20, 2011, 05:02:23 PM »
I'm right there w/ ya, totally overwhelmed. I posted almost the same thing as you just a few days ago. And let me tell you, this site has been so wonderful to me. The support here is awesome and what's nice is we can complain all we want bc we're all in the same boat.

I can't tell my husband how I feel, he doesn't understand. He can't understand bc he doesn't have this pain. He knows when I'm struggling but he hasn't quite figured out how to help me yet - which is equally as frustrating for him as it is for me. We have 5 children so when I'm out of commission, things get out of control really fast. It sucks. :(

Anyway, I hope you find this place as comforting and reassuring as I have. *hugz*

dbab

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Re: Consumed...
« Reply #9 on: January 21, 2011, 06:11:54 AM »
Y-  Before or after a diagnosis, it really doesn't matter.  With so many new things that come up, it gets the whole search engine started up again just when you think everything has been settled and you know what you are facing.  I'm so sorry, I know the anguish you are gong through with the trying to find the answers, its frustrating beyond belief.  Your story breaks my heart.  Have you considered trying to see a rheumy at a teaching hospital?  You may have more luck going in that direction.  I'm keeping my fingers crossed for you.

Oh and I feel you on the whole family thing.  I have a husband who refuses to face the fact, I think out of sheer fear, that I'm sick so I go through all of this alone.  My mother is my only support but she is so far from me plus her sister died from lupus complications in her lungs herself so you can imagine how much I hold back from her because I don't want to upset her or worry her.  I truly believe in support groups and thought they were the best when I did go to them a while back... will be looking into them again.

flutterfly

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Re: Consumed...
« Reply #10 on: January 21, 2011, 04:19:13 PM »
YNEVAR~by bein' here! & havin' peeps that understand!!!

my hubbs is a wonderfully dear man but he gets fuk^kin' tired of hearin' my complaints!!!

& ta tell ya the truth...i don't blame him...I'M TIRED OF IT!!! why wouldn't he be!!!   :-\

we're here 4 ya sweets!!!!

~*flutterfly...has 2 sets of rebel finners if ya need ta just vent in p.m. land!!!*~   :-*   :-*   :-*

Carolina

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Re: Consumed...
« Reply #11 on: January 21, 2011, 04:49:34 PM »
Dear Y:

It is natural what you going though.

in the beginning we are obsessed with every aspect of your condition.

Don't worry about it.


Relax.


Keep us posted.

Kisses

Elaine

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warmwaters

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Re: Consumed...
« Reply #12 on: January 21, 2011, 04:52:36 PM »
Hear what you are saying. I was talking with my sweetie the other day, and said "I'm bored with me". What I meant was that I'm really tired of being focused on my health. First thing he asks when he gets home is "How are you?" which is not the normal end of day that we used to but, "Can you walk ok? Should I get supper? Did you have any big problems today? "
And much of my conversation is not about all the things we used to talk about, but about the new medicine I'm considering, or a weird side effect that I'm experiencing, or whether I should dump Dr. X and move to Dr. Y.

But when I sometimes only have only an hour or two a day when I'm functional, that hour or two gets spent on researching the next test or drug, or paying medical bills, or sorting out the boo-boo from insurance company records, or .... you get the idea.

I will say that I spent some in therapy trying to wrap my head around this dramatic change in my life. I sometimes use the analogy of a professional athlete who has had an injury so bad that he can no longer play. Suddenly, he isn't who he's always thought of himself as, probably since he was in his teens.

Personally, I'm no longer the person who can multi-task, juggle home and work and family, who is super good at (whatever), who everyone turns to in a crisis, etc. etc. etc. I'm not the person who everyone at work thought was great at (whatever). In fact, I need an awful lot of help to keep the house clean, the family fed, and I can't even bring in money.

No wonder this is hard.

One of the ways I finally wrapped my head around it is this.... Maybe my world is only this big (waves hands and makes a box). But I'm going to try to do two things. Make the box bigger by exercise, and medical treatments, and learning to adapt. Get a handicapped plate, if that helps. AND make the inside of the box as good as I can by picking the things I want to do, accepting help, prioritizing, and learn to accept (most days), that this is the new reality.

Most days I can live with what I just said. Some days I'm cranky, angry or depressed, and don't like it at all. But I'm trying for more days where I'm happy in my somewhat smaller world than the days where I am beating my head against the wall with what I used to have.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Wynter

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Re: Consumed...
« Reply #13 on: January 21, 2011, 06:27:02 PM »
I understand what it's like to be consumed. That how I was for 1 1/2 years. I know what I have, but wanted a name. Needless to say it doesn't matter, even if Cleveland Clinic wouldn't diagnose me. The days I just make sure I can work, take care of my home and family. Everything else is extra.

season

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Re: Consumed...
« Reply #14 on: January 21, 2011, 10:10:02 PM »
Y- I do hope that you find a way to feel better. It is very easy to feel consumed and overwhelmed. Nobody likes this desease. We can't give up, we have to fight with everything we got.

As the old saying goes----     "How do you eat an elephant?"             "One bite at a time."