Maybe I have missed something, but why do you believe that you will need a hospital bag?

I have been struggling with CFS since the early 90s, but CFS has not yet put me into the hospital. About 14 years ago, CFS put me into bed for over 6 mths but no hospital.

By the way I really applaud you for preparing your will and finances, I really should get this done.

CFS is a chronic condition, but not terminal, you are going to have it for the rest of your life - however long that will be.

Do you feel like you are going to die sometime soon?
I know sometimes, I feel like it would be easier if there were an end in sight. (Kinda almost an attempt at humor.)

Hello Max PB,
I agree with SpaceGirl63. I've no doubt had this
for about 14 years. I've had good days and bad days. The whole
gammit. And I too have not been in the hospital. (OK. the ER
room a number of times mainly with bronchitis, pneumonia).
Because it usually happened on weekends when my regular
doctor wasn't available. And we have a care clinic which's one
step down from the ER. but just as good. So. I agree, it's good
that you've put your affairs in order. This is a good thing to do
whether you have CFS or not.
I feel we need to keep 'a balance'.
To have the hope, the faith, and to stay positive. But
that' doesn't mean we should ignore things like wills, and
long term investments. To see the doctor if we need to.
To take care of ourselves. And to trust that if something
should happen and we need to be in the hospital that we
can put some things in a bag when that happens.
And to trust that if we have good investments,
that down the road we'll be there to enjoy them as well.

When I was diagnosed, my doctor literally told me that he had "good news and bad news. The good news was that CFS wasn't gonna kill me. The bad news was that CFWS wasn't gonna kill me!" I just looked at him. NOW, I get what he was saying as I enter my eight year with this illness.

Never, ever do I think about dying from CFS. I'm 63 years old and on a good week or an "up" with this illness, I'm out shopping and going to the beach!! It is a horribly debilitating illness. It niggles at you, one body system at a time, it takes our old self and causes us to have to redefine it, but it does NOT kill us!! It's with us for life....there Is no cure, true! BUT, there is no limit to the possibilities of how we can make our lives more fulfilling!!

In the first three years, I was pretty much bedbound. Even now, during a crash, I'll get suck in bed for up to two weeks sometimes, but this illness has eased up on me! That, and I'm also getting used to it! I think that's a big part, Max! Acceptance. Please don't think that you need a hospital bag!! I've never been hospitalized, except for ER visits when something new scared me and my Dr. wasn't available. Every problem that has come long with CFS has an answer, an supplement, a lifestyle change...something, but we learn how to live with this roller coaster.

My husband and I are both bad about not getting our wills done! It's the responsible thing to do. But I wouldn't be doing it because I have CFS. This disease is not terminal! It's annoying as he^^, BUT it doesn't kill us.

I believe in God, and the power or prayer. I pray every day for strength to get through whatever this day may bring. Sometimes I'm so sick I have to crawl to the bathroom. Then two weeks later, I'm dressed up and ready to go visit my grandkids. I will pray that you will find the peace and strength to realize that this is an illness that CAN be adapted to, and we do that. Every day that we're here on this planet, with CFS, is a challenge. Don't be afraid!!! K? K!! We're all here with you! You are not alone!!

To add another perspective - since we are all individual in our causes, etc. of CFS, I did end up in the ER once and could have gone another time, but didn't. It was early on having CFS. One was a reaction to antibiotics. That's when I didn't go because I was having an acupuncture appointment that day & felt the acupuncturist could deal with the wildly racing heartbeat. It worked - calmed me right down.

The second time was that I was so toxic (I was on Cortef) & took some liver detox and all the toxins ended up in my knee because my adrenals were shot.- extreme pain. I went to the ER & they didn't have a clue. Waste of money.

I've learned more over the years & can usually stay balanced. But I do have all my affairs in order. I'm a big believer in that.

I have been in the hospital since getting this 15 yrs ago. I've been in for pneumonia, allergic reaction to med (2 times), and now a rare cancer that I recently had surgery to remove.

People have died from this illness but not everyone is that ill. After 15 yrs, I'm tired. I'm tired of fighting. I feel so bad that I'm sure death is knocking.

I've given my daughter power of attorney and set up a trust fund for my only grandson. I put my house in both me and my daughters name. I think I'm prepared.

I've had this at least 15 years and never gone to hospital because of it.
Why would I?

Why would you? If you truly have ME/CFS you would know. If you are self diagnosed and just "tired" all the time or if your doctor said you have CFS because you complain of fatigue and can find no biological reason for it, then you can't possibly comprehend how ill we are.

ME/CFS is characterized by neurological, immunological, gastrointestinal, cardiovascular and musculoskeletal features severe forms can present with paresis, seizures, intractable savage headaches and life threatening complications.

Thank you but I have been diagnosed with CFS by several physicians. Its why I am on permanent disability.

The Canadian Consensus Criteria fits me perfectly:
http://www.cfids-cab.org/MESA/ccpccd.pdf

And I just happen to live in Canada.

From the document:

Infrequent deaths have been reported in the acute stage due to orthostatic cardiac irregularity.

While statistical studies estimate group prognosis (77,78), the indi- vidual prognosis, which is highly variable, must remain a clinical estimate. To estimate individual prognosis more effectively, one must have ascertained the severity and course of the patients illness and impairments in each of their aspects, as well as the patients circumstances and the life-world to which they are responding. The patients progress must
be followed over a course of time, within a therapeutic relationship. One must have tried to eliminate aggravating factors that worsen the ill- ness and to encourage ameliorating factors. Only then can one give a reasonably adequate individual prognosis. Early diagnosis may lessen the impact of the illness. Generally, if one sees deterioration in a patients health status over an extended time, one may expect that there would be continued deterioration, whereas if improvement was noted over an extended time period, one may hope for continued improvement. However, in the Pheley et al. study (68) there was considerable overlap of severity of illness between those who recovered and those who did not, which suggests that accurate predictions of recovery for an individual patient may not be feasible at this time. Because of the chronic nature of this illness, it is of utmost importance that further re- search be carried out to identify subgroups with varying prognoses.

While I can't say I haven't been to the hospital in the 20+ years I've had this illness, I have never gone because of this illness, and there have been times it has put me in bed for months. There have been times over the years I wondered if I was close to needing in patient psychiatric care due to this illness, though. Is that perhaps what you mean? Either way - I'd say don't pack a bag if you are doing it because you feel you'll need a bunch of stuff at the hospital. If you are that ill you won't need anything but your ins card and ID. If you stay a while someone in your "family" can get what you need. But I do understand your emotions behind this because for many years I have been what my therapist calls "hyper vigilant". That's a nice way to say I worry too much and plan for the worst instead of the best. It's just in some of us who have had some bad stuff in life. I had hospital bags for myself and my husband in both cars for years (hubby has a-fib). They had clothes, copies of all my papers (will, poa, organ donor). But I don't anymore. I did end up in the hosp for another reason and the bag never left the trunk of the car. Perhaps this is not your issue and you really do just wonder if you should have a bag packed. If it makes you feel better to pack one and throw it in a closet or in your car trunk, heck, what does it hurt to just do it? It might actually help you be less anxious if you do.
And Max, you may get sicker and you may get better. In fact both are likely over your journey. I've had years that I count as nearly lost and years I would have sworn I was fully healed. It's the nature of the CFIDS beast. Really, all any of us can do is to take this a day at a time and live with it. We really don't have any other choice because we can rage all we want and it won't change a thing so living in harmony with our illness is our best defense. Wishing you peace.