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Author Topic: How do make them understand  (Read 2211 times)

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Offline Wessel

  • Member
  • Posts: 19
How do make them understand
« on: April 16, 2008, 02:11:03 PM »
Hi all,been lurking around this site for the past few weeks , been poz since 1993, my family,who all know im poz, cannot or will not , understand that I get tired. How.do I explain to them that i cannot do what i used be able to do?

Offline Dachshund

  • Member
  • Posts: 5,941
Re: How do make them understand
« Reply #1 on: April 16, 2008, 02:21:02 PM »
Despite the obvious, is there a medically diagnosed reason for your fatigue? Other than that I got nothin'. I quit trying to figure out or explain way long ago, especially when it comes to family. Now I just smile and take a nap.

Oh by the way, welcome.

Offline bear60

  • Member
  • Posts: 4,104
Re: How do make them understand
« Reply #2 on: April 16, 2008, 02:21:51 PM »
If I were you, I would have someone they respect (like your doctor or counselor) expalin this to them.  If you cannot seem to get the message across then you need to enlist the help of others.
Poz Bear Type in Philadelphia

Offline Wessel

  • Member
  • Posts: 19
Re: How do make them understand
« Reply #3 on: April 16, 2008, 02:30:28 PM »
I am currently on.Stocrin (evavirenz) that according to other posts is responsable) but i get it free, should i  go without arv"s?

Offline Wessel

  • Member
  • Posts: 19
Re: How do make them understand
« Reply #4 on: April 16, 2008, 02:37:28 PM »
By the way,this site has ment an lot to me! Excuse english is my second language.

Offline Wessel

  • Member
  • Posts: 19
Re: How do make them understand
« Reply #5 on: April 16, 2008, 02:55:49 PM »
Dachund , thanks for your post,as i.mentioned.only the sustiva can be to blame. Should i stop it and go for (according to my heajthcare.provider) my final.treatment before.i die?

Offline Dachshund

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  • Posts: 5,941
Re: How do make them understand
« Reply #6 on: April 16, 2008, 03:03:23 PM »
Dachund , thanks for your post,as i.mentioned.only the sustiva can be to blame. Should i stop it and go for (according to my heajthcare.provider) my final.treatment before.i die?

There are many reasons people with HIV suffer from fatigue and that should be a discussion you and your doctor should be having. We shouldn't diagnose over the internet, responsibly anyway, and I won't do that.

As for telling your family, I wouldn't have a clue. Maybe counseling for yourself before talking to your family would be a good way to start.

That's all I can tell you.

Offline Wessel

  • Member
  • Posts: 19
Re: How do make them understand
« Reply #7 on: April 16, 2008, 03:05:51 PM »
Thanks

Offline Wessel

  • Member
  • Posts: 19
Re: How do make them understand
« Reply #8 on: April 16, 2008, 03:22:30 PM »
My family knew about my hiv,still.they.expect me to be my old self, after 16 years its becoming more and more difficult.  by the way...Matty. You are my hero!

Offline David_CA

  • Member
  • Posts: 3,245
  • Joined: March 2006
Re: How do make them understand
« Reply #9 on: April 16, 2008, 04:32:18 PM »
I think I'd print out pages from the side effects section for each drug you take.  They're listed right here in the 'Drugs' section above.  Highlight all the side effects you have and give it to them.  Perhaps that will enlighten them.  If that doesn't work, screw 'em.  Give them hell for each and every thing that has changed about them as they've aged.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline aztecan

  • Member
  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
Re: How do make them understand
« Reply #10 on: April 17, 2008, 12:19:44 AM »
My family knew about my hiv,still.they.expect me to be my old self, after 16 years its becoming more and more difficult.  by the way...Matty. You are my hero!

Hey Wessel,
Trust me when I say I understand. It isn't easy just maintaining sometimes, let alone try to pull off some of the things I did 15 or 20 years ago.

For me, some of this is probably age. But, some of it is also having lived with the bug for 22 years, and having been on ARVs for a dozen years.

People have said, "You're younger than I am. Back when I was your age I could do more." That is from those who know my status.

It doesn't do any good to try to tell them differently. They don't want to face the fact I could be getting weaker or older faster than they anticipated.

I guess its their loss. I will do what I have to do to cope. If that includes a nap, I would take one, if I'm not working.

So, don't let it get you down. What are you taking along with the Sustiva?

By the way, I try to get some exercise several times a week. It seems to help offset the fatigue a bit for me. If you can, you might give it a shot.

HUGS,

Mark
« Last Edit: April 17, 2008, 12:22:57 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: How do make them understand
« Reply #11 on: April 17, 2008, 12:24:54 AM »
Wessel,

Welcome, to the forums!

I would talk with your doctor before changing any of your meds.  Maybe your testosterone level is low ... or a hundred other things.  It's not always the meds although it could be so let the doctor know.

My family is really great and if anything is seriously wrong they do all they can to help me out.  However, on a day to day basis they don't want to think of me as "sick".  So I try to be keep my mood positive around them.  That's just my personality and may not work for you.  

I think bear & David made good points about how to explain things to them.  If you are feeling and for them more importantly looking good it may be hard for them to understand what your body is going through.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Wessel

  • Member
  • Posts: 19
Re: How do make them understand
« Reply #12 on: April 17, 2008, 02:19:00 AM »
note to self...never start a post within 2 hours of taking meds!                         Thank for all the support, spoke to my vampire(nurse) this morning and she made an appointment to see the doc on mon to change from sustiva to nevrapine. Hopefully it will bring an end to the mind numbing depression and i will sleep more than 3 hours a night. Wohoo. btw currently on sustiva,lamivudine,stavudine.

Offline DCGUY2007

  • Member
  • Posts: 315
Re: How do make them understand
« Reply #13 on: April 17, 2008, 02:28:21 AM »
I have come to believe that sadly for some people (family) they will never understand. >:(

Offline RapidRod

  • Member
  • Posts: 15,274
Re: How do make them understand
« Reply #14 on: April 17, 2008, 08:44:15 AM »
If the Sustiva is really working for you I wouldn't change but you can get help with the CFS. I was diagnosed with AIDS related CFS and was given Ritalin for it and it has worked for me. 20mg in the morning and another 20 mg at noon and it keeps me to where I don't tire out. From trial and error if you take the second dose later in the afternoon you'll have trouble sleeping.

Offline David_CA

  • Member
  • Posts: 3,245
  • Joined: March 2006
Re: How do make them understand
« Reply #15 on: April 17, 2008, 08:59:01 AM »
If the Sustiva is really working for you I wouldn't change but you can get help with the CFS. I was diagnosed with AIDS related CFS and was given Ritalin for it and it has worked for me. 20mg in the morning and another 20 mg at noon and it keeps me to where I don't tire out. From trial and error if you take the second dose later in the afternoon you'll have trouble sleeping.

I'll second Rod here about Ritalin.  I don't take it (anymore); I take its cousin Adderall.  Not only does it help with the add / ADHD, I'm sure it partly what helps keep me fueled for the day.  There are slow release (long acting) versions of these which are good, too.  Adderall is good in that it doesn't keep me up too late unless I take it for that purpose.  Finally, a drug that's side effects are pleasant and beneficial. 

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline positively_me

  • Member
  • Posts: 87
  • love me...love my monkey
Re: How do make them understand
« Reply #16 on: April 18, 2008, 06:59:38 PM »
Thank you Wessel for posting this thread because I too have the same problem with my family.  They just don't understand that between the meds and just living with the virus day to day...I am exhausted.  I admit that some of it may be a mental exhaustion or depression, but I take an antidepressant and do my best to keep a smile on my face.  Sometimes I feel like screaming because I am so frustrated that they don't "get it".  I am the youngest in my family and they just expect me to be able to do everything I used to do, before being infected.

I feel like I can't talk to them about it because then they just worry about me.  I also feel anger and resentment from them at me for having gone and gotten myself infected.  I think they resent that they have to deal with it too.  I try to shield them from most of it.  I never bring up my disease or ask for their help.  I can't be hiv+ at home because my son doesn't know yet and I am trying to shield him from having to deal with it.  I can't be hiv+ at work because I'm expected to do my job and most of my coworkers don't know.  The only time I feel OK being positive is when I'm at my doctor's office every 3 months.  It is the only place where I feel that I don't have anything to hide.

I feel like I live between denial and self imposed exile...and it is extremely lonely.
Great minds discuss ideas; Average minds discuss events; Small minds discuss people.  - Eleanor Roosevelt

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,839
  • Vegas baby!
Re: How do make them understand
« Reply #17 on: April 18, 2008, 07:09:47 PM »
Positively Me, have you contacted your ASO (Aids Service Organization)?  They might have a support group you could go to and find others who could offer support etc.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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