The dreaded D-word.....Denial! Anyone experiencing it?

[ozikiwi]

I'm just wondering if I'm the only one having doubts around here??
I've been sick for 4 years, diagnosed (through elimination) with cfs for 2 years but still grappling with the horns of this monster!
I'm happy with my meds and my diet and my sleeping.......so don't feel any of them to be the culprit of my fatigue.
However, I've had heart arrythmia for the 4 years..........as well as exhaustion after exertion.
So my dilemma here is which came first...........and what's currently causing my fatigue ?
Anyone else in this rocking boat?

 

[Googsta]

Yes, often.....at least until I crash again. I even wonder if it is part of the illness to doubt!

 

[Sushi]

I'm just wondering if I'm the only one having doubts around here??
I've been sick for 4 years, diagnosed (through elimination) with cfs for 2 years but still grappling with the horns of this monster!
I'm happy with my meds and my diet and my sleeping.......so don't feel any of them to be the culprit of my fatigue.
However, I've had heart arrythmia for the 4 years..........as well as exhaustion after exertion.
So my dilemma here is which came first...........and what's currently causing my fatigue ?
Anyone else in this rocking boat?

If you can get the right tests you can be diagnosed not by elimination but by having a lot of biomarkers. I think this makes it easier because then the monster has a face and you know many of the things you are dealing wth!

Best,
Sushi

 

[ozikiwi]

Thanks for your replies......and SO 'comforting' to know I'm not alone with my thoughts!
Yes Googster, I am all about denial until I crash too......but I just don't know if it's my heart wanting the attention or the cfs.
So Sushi, how do I get hold of those bio-tests? I'm only seeing my GP at the mo.

 

[Sushi]

So Sushi, how do I get hold of those bio-tests? I'm only seeing my GP at the mo.

I think you just answered that question--your GP is not going to know what tests to give or how to interpret them. To get the tests that add up to biomarkers, you usually have to go to a ME/CFS specialist.

Sushi

 

[ozikiwi]

Thanks Sushi, but in little ol' New Zealand there is only 1 ME/CFS specialist and she's at the other end of the country to me!!
I don't know where you're from, but if it's Australia, are there a few over there as I tend to rock back & forth between the two countries?
Also, are we talking major expense?

 

[Sushi]

Thanks Sushi, but in little ol' New Zealand there is only 1 ME/CFS specialist and she's at the other end of the country to me!!
I don't know where you're from, but if it's Australia, are there a few over there as I tend to rock back & forth between the two countries?
Also, are we talking major expense?

Yes major expense, but our lives our worth a lot! After years of being ill I finally realized that I wasn't going to get better seeing doctors who knew less than I did about ME/CFS! Major expense, but it is also a major expense to be unable to work for years and years.

I am in the US and traveled to Belgium to see a specialist. I think there are a few specialists in Australia--the Aussies could guide you there.

Best wishes,
Sushi

 

[ozikiwi]

Thanks for your on-going help Sushi......much appreciated!
Shall ask some of the Aussies........but can I ask you how much are we talking? (Any currency......I can work it out)

 

[Sushi]

Thanks for your on-going help Sushi......much appreciated!
Shall ask some of the Aussies........but can I ask you how much are we talking? (Any currency......I can work it out)

Hi,
I've opened a chat so we can talk back and forth.

Sushi

 

[ukxmrv]

It's a horrible boat to be in Ozikiwi.

I have a fantasy that one day I'll meet a doctor, there will be a test or a breakthrough and a simple treatment will be available. In this dream it's either a cure for ME that actually works or something else with another name is found that causes my symptoms.

For me it's more straightforward in that I was completly well one day, then acute viral symptoms and this was all dcoumented by the medics at the time. After that a diagnosis of ME. There was no CFS at the time and the doctors I saw were experienced in dx'ing ME.

The questions marks for me are over what caused the acute and severe viral symptoms and why they persist to this day. I don't know what to do to help my major symptoms though but keep trying new things.

For anyone who has fatigue as the major symptom or didn't have an acute viral attack or who had a gradual onset of symptoms it is going to be a much harder path to get a reliable diagnosis. Denial could be the best state to be in until you are sure that diagnosis has been reliable.

There are good doctors around who know which tests to run, what to exclude and who can give a reasonable CFS diagnosis. My personal feeling would be to stay firmly in denial until I had seen one of them or had managed to get all the tests needed and learned about the diagnostic criteria.

One important thing I would do though is nothing that could make me worse or jepordise my health in a way that could become permanent. Exercise if it makes me worse I'd avoid and anything that would exacerbate my heart problems.

There are going to be some patients who will never get to see a reliable CFS or ME doctor or have tests (especially here in the UK) and that's very hard. I don't know if denial is the right word to use as patients need to live with a working diagnosis and CFS may be the right one for them.

 

[ozikiwi]

Sorry I missed the chat room Sushi.......I had closed my laptop lid & was doing other stuff.....nice thought tho!
And thanks uk for all your advice & support. I feel better already about being in 2 minds all the time - and not so weird!
I guess you were 'lucky' to get such a clear-cut diagnosis.......but having said that, ME /CFS must be the hardest riddle to solve!
I can remember the exact day my pneumonia turned nasty on me.....but as I said, so did sudden heart issues.
Anyway, have written to my local ME support co-ordinator to see if she can help me pin down what's really going on, by hopefully, recommending an ME/CFS specialist who can do the bio-marker tests......so watch this space!
All the best with your pursuit as well.

 

[ukxmrv]

Where are you living Ozikiwi?

 

[SickOfSickness]

I have plenty of denial. It helps and hurts me. It lets me feel hopeful again, but it is horrible because it has kept me from planning ahead properly. I regret not thinking ahead enough for all areas of my life. I should have realized earlier in my life that I had good odds of not improving. Psychologist say all loss is accompanied by denial, depression, anger, and bargaining over and over until you finally accept. I find few ME sufferers can accept and stay there, so we cycle through the others many times. So we can't help denial and most of us get hopeful, only to crash with despair if our hopes don't pan out.

Please be careful, most of us spend a lot seeing docs and getting tests. Later we look back and see how little we gained from all that money spent. So what if we have an official ME diagnosis instead of a probable ME diagnosis. We are still in the same boat. After years of being sick we often find ourselves struggling to pay the bills. Of course this is different if you have financial support that is going to stay steady, or if your insurance or government covers almost everything.

 

[hurtingallthetimet]

i use to be very active and busy and its been hard for me to except being ill i hate it..i hate everything ive lost..and ive lost alot...not being able to work..not being able to do all the things i use to do and love...

we all lose so much...and its hard i suppose that is denial of sorts...trying to tell yourself your ok so you will feel better but then always being so sick and realizing that your not ok...

sometimes i really feel so sick i feel like i have something that is deadly and i am going to die from and ive even told the doctors i think something else much worse is going on...it doesnt seem possible that these illness that alot dont even believe in can cause you to be so ill...its like some other diease much much worse must be what is going on..

 

[SickOfSickness]

I go through denial almost every day too, it hurts me because I can't prioritize

sometimes i really feel so sick i feel like i have something that is deadly and i am going to die from and ive even told the doctors i think something else much worse is going on...it doesnt seem possible that these illness that alot dont even believe in can cause you to be so ill...its like some other diease much much worse must be what is going on..

Sometimes I read speculation it's a disease like HIV, or ill people comparing their lives to HIV sufferers or worse.

 

[Sushi]

...it doesnt seem possible that these illness that alot dont even believe in can cause you to be so ill...its like some other diease much much worse must be what is going on..

Ah...hard to think of a disease much worse!

Yes, it can definitely make you so ill. That doesn't rule out some other condition, but ME is a beast.

Sushi

 

[ozikiwi]

Thank you ALL for sharing your thoughts & experiences........that REALLY REALLY helps me from feeling so alone with my denial.
Because just about everyone in the chat rooms are trying & comparing supplements, I felt I was a bit of a freak as I'm not into supplements (I just find them such a temporary & expensive measure) and relate my symptoms purely to physical, mental & emotional exertion.
So, a great relief to know there are some like-mindeds out there too!

To Sushi.....can you give me an estimate of bio-marking costs?
To uk......I'm in Dunedin, New Zealand.....way down under!
And to anyone else........had any experience with getting bio-marking tests?

 

[roxie60]

Oh my yes, I fight denial regulary, anytime I feel somewhat functional I tell myself I must not have this CFS/ME cuase I'm not bedridden. I too have been looking for answers for years and I am weary. Now that I found out about CFS (just 4 weeks ago) I am even more frustrated at the lack of help Drs have been/are. Right now I'm just tryihg to get basic tests to confirm CFS or someting else (gut). It takes so much energy ($$) to navigate this medical mess. I had to make at least 8 phone calls today related to medcal stuff, why cant the process be easier?????

 

[Xandoff]

In the Wizard of OZ the Wicked witch sky writes "Surrender Dorothy". When I am in denial about my ME CFS I try to remember that saying. It is very hard to ignore your internal DNA and Type A personalities we "USED to BE". My mantra is to live within my energy envelope and not push it if I feel better because we all know that just makes you feel worse. It's much worse (ME CFS) than having a giant zit in the middle of your forehead the night of your Prom Dance! I do not suffer regular Doctors, though they aren't the problem. We all have to accept our limitations and and ask for help when we need it. ( No...I don't do very well at that) We are all very ill and need to get to real ME CFS Doctors who understand us. My heart goes out to you all who have not found the testing and proper care. It took me SEVEN years to get out of the local GP Doctor system that made me so angry. Typical testing will not show anything. So my Mantra for you all is to live within in your energy envelope and seek the real care you need. It's like being a 800 horse power Ferrari with four flat tires!!!!

 

[ozikiwi]

I feel your frustration Roxie, and am grateful to have found a denial buddy.......makes me feel less of a black sheep!
And Xandoff your perspective was just a hoot to read......though I get your message.
Seems I need to find me a real live CFS doctor, but I only know of ONE in little ol' NZ and she's way up north. Maybe I just need to make that trip if I don't want to turn out like you X!!