Getting a lot of good vibes (and advice) here

There is a FMS/CFS support group at Yahoo! Groups that I've been following. I've gotten some support and helpful advice there in the past week or so.

But, Lord, why couldn't I have found this group a year ago???

I really am going to bed now...

MorelaterZ--

but it's the waiting that's gonna kill me.

Nine days since my hearing. Right now, I have this killer cold, and I'm achy. I don't know if I'm coming down with something other than a cold, or it's an FMS flare. I'm betting on the flare, though. My lower back has been unusually stiff today. That concerns me because when my back gets that way, I'm going to have muscle spasms at some point and will be unable to move or do anything.

I just want to know if I've been turned down a 3rd time, or what. I was told it might take some weeks to find out the verdict. After all the waiting to get this hearing, waiting for the decision is going to stress me out, which will not help my symptoms one damned bit.

I gotta go to bed. I just got extremely sleepy.

MorelaterZ--

It went well...

The SSA hearing lasted a little over an hour. The judge was rather nice and wasn't condescending (unlike a couple of the lawyers I spoke with prior to this hearing). He asked me questions, had me describe a typical day, what my work history was like before I got diagnosed with FMS, the kind of jobs I thought I could still perform (honestly, your honor, none, I told him). Then an occupational expert testified about the types of jobs that my skills could transfer to, if I could hypothetically still perform these jobs based on hypothetical situations ("if I reduced her work time from eight hours to four, could she still do these jobs?" "...from four to two hours..." etc.). Then (and this is good...), the judge asked the expert "if she were working, but missed quite a bit of work because of her disability, would she still be able to keep her job?", the expert said, no, because according to the DOT, a worker could only be absent one day a month. Any more than that, and it beomes a dependibility issue. My question was, if I could only work one or two days a week, what employer in their right mind would hire me?

Still, I don't hold out any hope of getting approved. The judge understood that because I had no income, I couldn't afford to see any doctors to get treatment for FMS. If I do get disability and SSI, I will be quite shocked and surprised and extremely happy. I would go out and restart treatment so I could go back to work someday. I can't retire for 27 years, so going back to work would be a priority in my life. It's just right now, I can't work for more than an hour without pain.

Right now, I'm in pain, so I gotta go.

MorelaterZ--

From Mi Vida Loca

Tuesday, April 06, 2004

Getting my sleep on
...or not.

Welcome to the 16th consecutive year that I have been unable to get a decent nights sleeep. What happened in 1988 that caused this? Car accident in El Paso, TX perhaps. It makes sense. To me anyways.

FMS causes you to be unable to sleep. Depression causes you to sleep a lot, usually at the wrong time of day. Imagine having not gotten enough sleep but are still expected to go to work, school, or appointments. This has been my life for the past 16 years.

I know I need help with this, but, like other things in my life at present, it requires money I don't have.

End rant.

MorelaterZ--



March 8, 2004

I am concerned about my health. I sleep all the time, I don't feel like doing anything, and I am not keeping myself up the way I alwyas have. It's almost like I just don't give a damn about anything any more. I need to see someone soon...or God only knows what may happen to me.

I can't talk to anyone about this, because they'll just blow me off. They'll tell me to go out and get a job. I have to get out of Oklahoma, or I will literally go insane. I don't know if a change in location will help me, but being treated like shit by my family is more than I can bear. I feel like I am imprisoned here.

I know I'm depressed. It's a feeling I know all too well. And it scares the shit out of me.

MorelaterZ--



February 22, 2004

I'm going crazy! Get me the hell outta here!

I've just about had it with everyone and everything that has to do with my staying here. Between my mother's apathy and my sister's bitchiness, I'm just about at the breaking point.

The big losers here would be the boys.

But as long as I stay here and am not able to find a job, I am just a burden on everyone. I don't see any way I can stay here any longer. I might end up in the loony bin before long.

I can't take this anymore. It's not like anything that I expected when I came here. I thought I'd have no problem finding a job. I thought that I could get disability from Social Security, but that is a long, drawn out process. I might have a hearing as soon as next month, but who knows?

All i know at this point is that when I get some money and take care of some obligations, I'm leaving Oklahoma, and I won't return until I can take care of myself. It's better for everyone all around if I do.

Go anyway?

I called the SSA today, because I was concerned about the lack of medical evidence in my case. I already know that the ruling will not be in my favor. The woman who finally answered my call told me to explain everything I explained to her to the judge next Tuesday, and maybe he'll be able to suggest something for me to do to get the medical care I need, despite my lack of funds and medical insurance.

This does not do anything to put my mind at ease, but that just may be me overreacting again. Maybe this will be a good thing. I could really use the financial help more, but maybe this'll be a major stepping stone to getting the SSA to see that I am really too disabled to work right now, but with treatment, perhaps at some point I could go back to work.

MorelaterZ--

Living with FMS

By Bruce Campbell, CFIDS/Fibromyalgia Self-Help
Program: CFIDSselfhelp.org. Reprinted with permission.

What are the most important things to remember in
coping with Chronic Fatigue Syndrome or
Fibromyalgia? We asked that question of several
groups of people participating in our program.
Specifically, we asked them to imagine that a
newly-diagnosed CFIDS or fibromyalgia patient
approached them for advice, asking what three or
four things they had found most helpful in coping
with their illness.

Their responses clustered into six themes. About
two-thirds of people mentioned one or more aspects
of the following three ideas:

1) Accept Your Illness

Whether you have CFIDS or fibromyalgia, your illness
is real, physical, and long-term. Getting it was not
your fault. While your should accept that your
illness is long-term, you should also be hopeful
because there is much you can do to improve your
life. Rather than fighting your condition, be
compassionate toward yourself as someone with a
serious illness.

As one student said "the single thing that has
probably helped me most with living with my disease
is accepting that I have a chronic illness. Since I
started to plan my life around my illness, my life
seems to have improved. For a long time, I was in
denial of my disease and lived in hope for the day
it would just go away. My life seems better since I
accepted that I have to adapt to the illness."

Another student emphasized the challenge of
adjusting to loss. She said that a new patient is
likely to go through a grieving process before
reaching acceptance. "We grieve the losses this
disease has caused in our lives. Our lives are
drastically changed by our illness."

2) Live within the Limits of the Illness

Adjusting your activity level to the limits imposed
by the illness is one of the most helpful coping
strategies you can use. In our course, we call it
"living within the energy envelope." The idea is
that we have less energy than before. If we try to
do too much, we usually trigger an intensification
of symptoms that forces us to rest. In contrast to
living life on this roller coaster, we can gain some
stability if we learn to live within our limits. To
do this, you need to learn to listen to your body
and respect its needs. Having limited energy imposes
the need to simplify and to prioritize. By pacing
yourself (balancing activity with rest) you can gain
some control over your illness and bring stability
to your life.

One student summarized the idea of accepting limits
by saying she would advise "setting priorities,
really getting down to basics and saying no to
activities that do not fall within our personal
agendas. It is essential to preserve our energies
for activities that help us get better. This becomes
most difficult when we hate to disappoint special
people in our lives, but we must remember that if we
do one thing, we can't do another."

Another said that she believes the key to living
successfully with chronic illness is to adapt life
to the illness, and not just as a short term
strategy. Looking back, she believes she clung to
the idea of getting better too long. "I really
needed to be told, life will not be the same. I
needed to learn to manage my life from that point
on, very carefully, much as diabetics and others
with chronic conditions do."

3) Get Support

Chronic illness can be isolating and demoralizing.
Others may not always understand or sympathize.
Having people in your life who acknowledge your
suffering and offer support can be crucial. Seek out
support from fellow patients, who understand because
they share your situation. Stay connected to family
and friends to the extent possible, but be realistic
in your expectations. Some people may never
understand.

A third to half of those responding mentioned three
other themes:

4) Keep a Positive Focus

Though there is as yet no cure for either illness,
improvement is a real possibility. Through your
efforts, you can gain some control over your
illness. Regardless of your situation, it is
possible to lead a meaningful life, so value and
take care of yourself. In the words of one student:
You have a choice in every situation. You can be
defeated by it or learn and grow from it.

5) Educate Yourself

Many treatments are used for the two illnesses, with
new developments occurring all the time. No cure has
been found to date for either illness and no
treatment has proven widely helpful. Seek out
information and options about the illness.
Experiment to find what works in your individual
situation.

6) Rest Daily

Integrate regular periods of rest into your day,
regardless of how you feel. (In the course, we call
this "pre-emptive resting" or resting as a
preventive measure.) By taking scheduled rests-lying
down with your eyes closed in a quiet place-you may
be able to prevent flare-ups or reduce their
intensity. Such rests can help lower symptom levels
and increase a sense of control.

Other Themes

Other themes mentioned included getting exercise and
avoiding stress. A surprising result was that only
about one person in ten mentioned medical care as
being important to their coping.

Summary

In summary, members of our groups think that the
foundation for coping with CFIDS and fibromyalgia
lies in the combination of accepting the long-term
nature of the illnesses, adjusting one's life to
live within the limits imposed by illnesses, and
having supportive relationships. They also believe
that a hopeful attitude is both realistic and
effective, and that self-management includes
education about the illness and experimentation to
find what works in an individual situation.

Symptoms of FMS/CFS

Anxiety

Blurred vision- trouble reading small to medium print (especially in
the
evenings)

Bowel problems (related to IBS)

Chronic headaches
Chronic sinus pain

Difficulty with fine motor skills/writing
Dry eyes

Increased muscle pain subsequent to light exercising
Involuntary muscle spasms

Joint pain with no inflammation

Muscle weakness

Nausea

Occasional dizziness (mostly in the evenings)

Poor short term memory


Reduced cognitive ability
Ringing in ears

Severe widespread muscle pain
Sleep problems
Sore throat
Stiffness and pain in muscles upon waking in the morning, and the rest
of the
day for that matter

Someone has to care, dammit!

I'm at my lowest point. I don't know where to turn next. Everyone who says they care about me has proven they don't. The state doesn't care, my family doesn't care...no one.

It's not just physical pain anymore. It's in my soul now, too. I'm a burden to everyone who has the misfortune to know me. I can't contribute, and I can't afford to get help, either. Money truly is the root of all evil. Without it, you are no one.

I am no one. It's official.

I may as well go live out on the street. I'll last maybe one second. Not even then will anyone care. They'll just say good riddence to bad garbage.

What I did today...

I took Jeff to the mall....he went to buy something with his birthday money and I walked around. Felt pretty good while I was doing it, but I got bored. I went to the food court and waited for Jeff there as we agreed.

I'm paying for it now. I'm exhausted and sleepy as hell. Walking never effected me like this until a couple of years ago. Even before my diagnosis, I'd come home from walking and fall asleep on the couch. Often, I'd wake up the next morning if I walked in the afternoon. Even when I worked all day, I'd be too tired to fix dinner.

This is really getting to me. I shouldn't be so tired all the time. I shouldn't be in pain all the time. I'm only 40 years old...I'm too damn young to feel this damn old!

MorelaterZ--

Stress definitely does not help

This was a pretty bad week for me. First there was that idiot lawyer, then calling medical clinics only to find that they cannot help me, then my sister getting on my case about how I'm not going to get Disability and I should go out and get a job, any job.

Stress does not help my condition, it just seems to make it worse. I'm in a great deal of pain at the moment, and even after taking OTC pain relievers, doesn't seem to diminish it much.

I've decided, though, to ask the SSA to subpoena the doctor they sent me to a year ago January. He did an exam that I felt then and still feel now did not truly show the true nature of FMS as experienced by those of us who work desk jobs. This doctor did not have me sit at a desk for 8 hours, then measure the fatugue I felt for days afterward. He had me do simple range of motion exercises that don't truly measure the discomfort I feel. On this alone he told SSA that I was not disabled enough to get benefits.

I'll be prepared for April 20th. Now I have to see a doctor. This is really starting to get me down in a major way. See Mi Vida Loca for more on that.

MorelaterZ--