 Re: just connecting
Hi!
Regarding the Rosecea, why not use a topical instead of an oral medicine? I
do.
Question: I am getting ready to go off ssri's after 10 years. They have been
very helpful but I think its time to "go it alone". I WILL do it bit by bit
and with the doctors advice. Has anyone else gone off ssri's
(antidepressants) and done it successfully?
Thanks for reading and sharing!
Donna
-----Original Message-----
From: Chronic Fatigue Syndrome discussion CFIDS/ME
[mailto:CFS-L@LISTSERV.ICORS.ORG] On Behalf Of Shea
Sent: Sunday, July 09, 2006 11:07 AM
To: CFS-L@LISTSERV.ICORS.ORG
Subject: Re: just connecting
Hi Pamela and Wendi,
I just wanted to add that I SO understand the lack of understanding from
friends and family and I can so relate to what the two of you said. My
husband is also the most understanding. I have my best friend who tries to
understand and be supportive, but she really doesn't get it. I feel blessed
that I have my husband and friend that don't make me feel so neurotic. My
Mother (who has always been there for me my entire life.also doesn't get
it.she just wishes I would get better and doesn't care to here that I'm
having a bad day). I think that is the norm.to have people treat us like
this. So.like you guys.I just have isolated myself and I just put on a
happy face and try to never mention anything about it. I have learned that
it is just easier.
I wanted to add that I have never been able to handle being massaged since I
first got sick with CFS 16 years ago! It makes my muscles immediately feel
sensitive and hurt. I cannot tolerate even a light massage from my husband.
So I thought how odd that Pamela was better with massage! I have tryed.and
I WISH it helped me but it only makes me worse! Weird.huh? So I was
wondering if anyone else has had this experience?
Also.after being a sun-worshiper all my life.and living in
California.since CFS began I cannot handle being out in the sun for very
long. It actually makes me feel sick and like I might faint. I have had a
few close calls from being out in the heat several times now.and I barely
made it back home only to crash in bed.sicker than ever. So.odd how
different what we can all tolerate.for some of us.it feels healing.others
(like me).these things make me worse. Oh.and I actually prefer to go out
in the evening or even later at night when it is cooler.to do my errands.
My friends call me Vampira
because I am getting to where I prefer doing things at night! lol!
I was very sick with CFS the first 5 years or so.but I am not as sick with
fevers, swollen lympe nodes, malice is better, etc. However I still have
pain and fatigue most all of the time that I just deal with. I guess it is
fibromyalgia pain. Pacing myself makes it tolerable.I try not to take pain
meds. Anxiety is still always there too. I've felt better since taking an
anti-depressant.
Oh.and I tolerate antibiotics better than most people (especially ones with
CFS) it seems. Doxycycline makes me feel better.anytime I take it! It helps
my breathing problems. I take Doxycycline off and on for a skin condition
called Rosacea.and when I do take it for that.my sinus and respiratory
symptoms always improve. So.another difference between us. I just thought
I'd share this with you guys. :o)
Shea
CFS/FM since 1990
Date: Sat, 8 Jul 2006 04:45:34 -0700
From: Pamela Venus <pamelavmail-cfs@YAHOO.COM>
Subject: just connecting
Hey everyone. I just wanted to check in and connect with others who
understand.
After struggling with upper respiratory stuff for the last 3 months, I am
finally feeling better and able to do some things I enjoy--lay out in the
sun (which I love!!!, go to a movie etc.). I've been off work for the last
week from my most stressful job (I work two part time jobs) and seeing how
much better I feel with the absence of that stress has been very
illuminating. I've started looking for another job which feels exciting and
stressful in itself--I don't like change and there is the familiarity and
the senority/benefits that come with being in one job for 9 years. The
stress is so overwhelming there though that I know that I need to really
look at other options and learn to detach more and manage the stress better
until I find a better fit.
It's been really hard for me with friends recently--I have felt an absence
of support and understanding while I have been sick and unable to do things
and be more available. I know that others can't understand this illness
because they haven't experienced it but I have felt that when I try to share
about what it has been like for me--with one friend there has been just
silence which feels like a lack of caring and sometimes feels like
judgement. With a couple other friends, I have felt an absence of
support--that there is a lack of mutuality (not totally--but enough to feel
a real imbalance) in the relationships--that they want and expect a lot of
support from me but when I have been in need and really have not had the
energy to give--there has been a very noticable gap in our communication and
realtionships. How do others cope with this? It's been really hurtful and
disappointing to me--some of these are very long term friendships.
This illness can be so isolating.
I know that I have not been very available myself the last couple months
due to being so ill. I feel hurt and angry and resentful and have the
energy and awareness now that I need to share my feelings directly with
these friends. Otherwise, I continue to feel resentful and drained by those
relationships. It has been such a theme with my personal relationships
recently that I am left wondering what the lesson is for me--what I need to
learn from this and/or do differently in my life.
My husband has been very supportive and is my best friend and I'm so
grateful for that--but he has also been going through some major stressors
himself and I know that I need more of a social support structure in my life
than just him (or any one person).
On a positive note, I have tried something that has really helped me--it's
not a cure but it has helped a lot with reducing/eliminating my muscle pain
(for me, muscle pain is not my primary/prominant symptom but it had been
more present the last several months) and also has been a great stress
reducer and I think has started to help boost my immunity. It's called a
Migun massage bed. It combines massage, chiropractic, accupressure and
moxibuxtion (infrared heat therapy). A friend of mine who is a
massotherapist and has Fibromyalgia got one for her use and to use with her
massotherapy practice. After trying it for 4 sessions--I was so impressed
with how much it helped detoxify my system, made me feel better etc. that I
used the money I was saving for a Caribbean vacation to purchase one so I
can use it daily. I use it every morning and evening and it seems to really
be helping me.
Again--it's not a cure--I still have CFS but it has helped me feel better
and reduced some of my symptoms. I still have difficult days and my energy
is still limited--but at least I'm able to function socially again. It's
also very relaxing. Most cities have demonstration centers where you can
try/use the Migun for free--most for an unlimited amount of time.
It's something that's pretty new to the east coast--I had never heard of
them before. It was developed in Korea and is used in the hospitals there
and has gotten FDA approval here as a physical therapy device. I was able
to get my doctor to write a prescription for mine so that I can write it off
of my taxes next year. Anyone that is interested can check it out at
Migunworld.com and the research on it's use is available at
migunminnesota.com/Clinical_Research.htm. I am not selling the Migun--it's
just something that I have found to be helpful and wanted to share my
experience with others. I've been using it for about 2 months--1x a week
for the first month and then daily for the past month (since I bought one).
I'm hoping that over time it will continue to boost my immune system and
help support my health. I'll share my experience with it after longer use
if people are interested. My husband (who had Hepatitis C) has been using
it once a day as well and it has
been helping him alot with his physical energy. A word of caution--when I
started using the Migun daily--I went through a really intense detox process
for about a week and felt awful--but that cleared and now the detoxification
is much more gentle.
I have also been heartened and saddened/scared by the recent research
developments for CFS that came at the cost of someone losing her life. I
wasn't aware that CFS could be life threatening/cause death--that really
shook me up. I need to do more reading on ME and how it is defined--and how
you know if you have life threatening symptoms. I've had periods where I
felt so terrible that I "felt" like Imy life was at peril but I always
thought that it was just a "feeling"--that it was just because at that point
I felt so physically miserable. Learning that CFS/ME has caused the death
of others really shocked and shook me up.
Well, that's my scoop. I hope others are hanging in there and able to
enjoy the sun. This is my favorite time of year. Lying out in the sun by
the lake is one of my favorite things in the world--I absolutely love it.
It feels very healing for me.
BTW: Bobbie mentioned a while back about a medication that people with
CFS shouldn't take--is there a list of others that shouldn't be used/taken?
If so, could someone post the list or a link to the info. Thanks,
Love & blessings,
Pamela
and
------------------------------
Date: Sat, 8 Jul 2006 08:12:58 -0700
From: Wendi Carrillo <tres_gatos87801@YAHOO.COM>
Subject: Supportive Friends
Morning, Pamela,
I'm imagining that I'm writing this from a window overlooking your lake
house! How nice..
Pamela, you are definitely NOT alone in the friend issue arena. I'm
counting my close friends and they are two. My husband and his best friend
and yet the friend still has no idea how sick I really am. I put on my
"all's good" face when he's around. The only excuse I have now that people
can half way understand is when I use my Hashimoto's thyroid disease to
explain to them why I quit my exercise class, or why I can't go out for
drinks, or go out at all anymore. It's the ONLY thing I have diagnosable
that people understand.
I'm a shell of my previous CFS self, just in the last year. My Hashimoto's
has taken it all out of me. Being hypothyroid is like CFS mulitiplied by 10.
Many people believe I had Hashimoto's all along, and if I get it under
control everything else will go away. I did NOT wake up with Hashimoto's. I
woke up with a flu that changed my entire life as I knew it 15 yrs ago.
Hashimoto's is just a result. I look at all my supplements and naturopath
bills and wonder where the heck the guy is out there who can fix me with
gene therapy instead of ALL this other stuff. We've all been struggling this
long with no cure. Heck, people with HIV almost live a better existence than
some of us. Not that I'd trade this disease for HIV, but dear god, can we
not get some legitimate help?
Pamela, I don't know how to tell you to deal with the lack of
understanding and care from your friends. My own mother, who is one of the
most understanding people I know, still she does not get it. She thinks it
was the emotional trauma of being an only child with a young mom who wasn't
around much. Again, another person who thinks it's all in my head because,
"you don't look sick". Thank god for the goiter or they'd have put me in the
loony-bin by now! LOL!
For help through the hard times I look to my spiritual side. Yeah, and I
get mad too once in a while. You know, the whole why me bit. And I too, put
too much pressure on my husband. Thank God for him. But honestly, he's the
only reason I haven't done something to hurt myself. It would devastate him
and I couldn't imagine leaving him with those emotions. But it gets that
hard sometimes.
Hang in there. Wish we were near each other. At least we could lay out
together, watch movies and dish about the world together from our safe zones
without any outside judgement. What fun that would be!
Take care. We're always here if you need to chat 
-Wendi
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