Does anyone get better?

Chronic Fatigue Syndrome
#21

I agree with everyone here, and have had most of the same experiences.  I have had this dreadful disease since I was a c hild.  My mother always told me I was the laziest person in the world.  It wasn't just a case of not wanting to help out or do my homework.  I just couldn't move.

One of the worse things for me is beating myself up mentally.  On the days I have to stay in bed, I can't relax because I keep thinking of all the things I should be doing. Does anyone else have a problem with that?

I think pacing one's self is essential to our well-being!  And I do pick and choose what I want to do, knowing that with somethings, I will indeed have to pay for it. I am fortunate that my husband and family understand this.

Do I think I will get better.  No. I'm not being morose. I've just accepted that this is my life.

Debbie

#22

It takes a lot of doing to not beat yourself up over not getting up and doing, but after you've put yourself in relapse a couple times from pushing yourself, you learn that it's not a good idea to beat yourself up because you're not going to get better if you force yourself to do more.

The good news is, I don't have a husband to make me feel guilty over the things I don't do around the house.  The bad news is, I don't have a husband to pick up the slack with the things I don't do around the house.

I now focus on the things I *can* do without exhausting myself.  I have a new "job" as a blogger on someone else's website, primarily on the subject of the sorry state of health care in this country.  I have my business which is run from my couch with my head down and my feet up.

As far as the housework, I do as much as I can, but I'm not going to force myself.  For the days I don't feel well, there's pre-cooked food in the freezer, so I just have to stagger to the kitchen in the morning, throw a can of food on the floor for the cats, and pull out something to defrost for myself.  When I feel up to another trip to the kitchen, I put it in the microwave. 

HINT: I got a couple of those mug warmer things.  If you don't finish your whole meal, just set the bowl on it and it'll keep it warm till you can eat a few more bites.  If you don't feel up to going to the kitchen for tea, you can bring a cup of liquid to drinkable temperature in about half an hour on the mug warmer, so I keep bottled water under the bed and just refill my mug.

HINT #2: Thermos bottles.  You can have a healthy family member bring you soup or tea before they leave for work, and you'll have it at the right temperature at lunch time. 

#23

Hi Everyone,

I am new to this. I had mono for about 9 months and now have had CSF for about a year and am struggling with work not to mention raising 2 kids on my own. I have no life now. So some of you don't work? How do you survive? Do you go on Social Security? Are you making it ok? I need all the help I can get.

 This is an awesome site!

#24

Well, Suzy, you can TRY to get on SSDI, but don't hold your breath.  I applied 7 years ago and still haven't been approved.  The judge keeps making remarks that I "look healthy". 

Both judges that I've had have a history of not believing that CFS is real, so they cherry-pick the evidence to pull out only the phrases that prove I'm healthy.  For example, one doctor noted that I have arthritis in my hands, but at the moment my hands are "fairly functional"; the judge rewrote that so that the doctor was saying that all of me was "fairly functional".  For another, I went to a one-hour concert at the library with a friend and on the way home we stopped briefly at a store for either kitty litter or milk (he is primary caregiver for his parents, so I would not have kept him away from home long enough for a full-scale shopping trip); the judge's rendition of this diary entry sounds like I stood in line for 3 hours at the arena, then danced for 3 more hours in the mosh pit, and then spent 8 hours at the mall.  Oh, yeah, and he upgraded my friend to my "husband", so that the person reading the appeal would decide that I didn't desperately need SSDI because I had a husband supporting me.

The leading published California case on SSDI for CFS, it took her 10 years and the Court of Appeal to get approved.

Since you have kids, I'd apply for welfare to at least have some income.  Frankly, the benefits you get with welfare are better than what you get with SSDI.

#25

Thank you guys for you input. I guess I’ll keep plugging along and trying to work. You have been great!

#26

"As I said, I started my own business.  Work gets e-mailed to me and I e-mail it back.  If I need a nap, I take a break.  If I really don't feel well, I send the work to my healthy back-up, and just let the clients think that I'm swamped"

now that sounds like something which would work for me.  Right now I have no backup person set, for the days when I cant do my part time work.  Hence I keep loosing work.  If I had someone I could get to fill in for me, no hassels, things wouldnt be a huge problem.

......

Hi suzy :) welcome here.

" I had mono for about 9 months and now have had CSF for about a year and am struggling with work not to mention raising 2 kids on my own. I have no life now. "

 You are very lucky right now thou as your CFS isnt very bad. (((hugs.. I do understand thou that it could be feeling very bad to you thou).  If you can to avoid the risk of worsening it, consider cutting back to part time work.

  "So some of you don't work? How do you survive? "

 Most CFSer are completely unable to work full time, many of us cant work at all, (many even have problems doing part time so hence need to be  on disability pensions).  

   I am struggling with only a few hrs of work per week as I can only be on my feet all up 2-3 hrs in a day which includes the time in which I shower, cook, dress etc (much less on my bad days).   Im currently only working 2-3 hrs per week.. but could really struggle and be able to do 8-10 hrs per week.  I have others taking care of me at times as I cant even always drive etc cause of this.

   When I first became ill, thou I was studying full time, I also was on a single mothers pension.. so when I was forced to drop out of college, I was able to survive on that, it didnt change my money situation.  (very very fortunate as I was terrible sick and bedridden for long time.. I would of been too sick to be trying to fight the system at that point and to try to be claiming disability).

  My children now being older and the fact Im not on a single parents pension no more.. means Im now fighting the system to get onto disability.  My claim is currently being assessed.  Thou Ive got fairly bad CFS which includes an hospitalistion due to it and also struggle to work at all, Ive already been rejected several times.  My claim has been in the system longer this time.. so maybe this time they are taking it seriously.  One has to be very sick (eg not able to work at all and have problem even with part time work) to have any hope of getting a disability claim granted. 

(well at least that is the case I know for America and where I are in Australia.. England I think recongises different degrees of disability so have different  levels of disability payments.. so getting money for disability at the lower levels over there may be easier).

 

#27

to answer the question does anyone get better? YES but I don’t think anyone is completely cured.

I agree with what some of the other ladies said in order to get better we have to learn to pace ourselves.This was very hard for me to learn.Also we need to build our immune systems up.We need to be getting the proper rest,which means sleeping pills other wise we don’t get that deep sleep even if we are sleeping all the time.

I was to the point where I couldn’t stay awake. I had to quit driving I fell asleep 2xs while driving.I would also fall asleep in mid-sentence.I had no life I couldn’t even carry on a conversation.I would get my words and thoughts all mixed up and the pain was horrible,I would go to bed crying 3-5 nights a week.I started taking reliv a patented food supplement and it helped me to build my immunity up and help my body to begin to help itself.Even though i will always have CFS and fibro I feel like I am starting to get my life back ( as long as I don’t push myself)…themommie

#28

hi, thanks for the info, much appreciateed.

cindy

Quoting bedhead cfs-cpt1355@lists.careplace.com:

#29

You are am amzing inspiration to us who suffer silently in pain and anguish b/c medically we are considered Quack pots.

From: runnergirl cfs-cpt1355@lists.careplace.com
Date: 2007/04/19 Thu PM 12:29:06 EDT
To: curvesensley@bellsouth.net
Subject: Re: [cfs] Does anyone get better?

#30

you sound more like narcolepsy, with cfids, their is usually a severe sleep disorder, and although being exhausted 24/7, never get a 'replenished sleep'..just a thought...

i imagine you've done the sleep studies though! good luck!

pinkrainbow

#31

My CFS specialist has just told me I have to quit my part time work as the ones from government job seekers dept were just making me sicker, they really dont have a clue!!!

eg… I tried to tell my job support officer that I will need to have a good boss as I cant always work everyday due to the illness being so variable… her reply “if you just pace yourself, you’ll have no trouble”.

I then tried to explain the her it doesnt always work that way as sometimes there may be more I MUST do. I then tried to use an example of a sister getting married and me attending the wedding and how I’d be then wiped out for days… probably not able to work.

Her response was to just start counting out the hrs it would take to go drive to a wedding, watch it, and then have the reception later and get home. She then came out with “oh that’s an all day thing! So if you are well enough to go to your sisters wedding, you would be well enough be able to work all day.” :frowning:

She didnt consider the fact that I’d be getting another to drive me there and bring me home… that I’d be probably having to lay down while watching the wedding… and the fact I’d be going somewhere to sleep between the wedding and the reception. All this was lost on her.

So my doctor on hearing that …wasnt happy. Job place has been being ridiculous for the past 6 mths and completely stressing me out… so now the order has come from my doctor “NO WORK FOR YOU!!!” (if it wasnt for the job place, i’d still be working part time)

So now im going to be completely workless and still awaiting to see if the government disability pension will be approved.

#32

Hi all I just wanted to tell you about disability. What makes me sooooo angry is that here in the northwest, people in prison come out of there with coverage and disability due to things such as alcoholism. Wow that really blows me away, that it is difficult for those of us who have multiple “silent” disorders have such a difficult time getting disability. I recently got approved for disability and it was amazing, the main theme seems to be that I was too young. I keep saying gee I did not ask for the foot surgeries, the chronic fatigue the CRPS (central regional pain syndrome) and on top of that throw in breast cancer. Believe it or not thank goodness right before the date of my hearing I found that I had breast cancer. I say thank goodness because I could hvae been turned down only to find out after that about the cancer. So I went in and said Oh yes by the way…But I must tell you that my main feeling was that if I had not had the breast cancer I would have not been approved. I seriously consider CFS my worst disorder. I sleep literally for days at a time. I mean the breast cancer is sort of a side…it is the best of the disorders for a cure and long term solution. So I just wanted to let you know that with a diagnosis of CFS or Fibro it is very very very difficult to get disability. As I said, I would have not chosent to have multiple foot surgeries etc. Unreal. Good luck everyone… Oh yes I wanted to tell you, I knew I was bad bad when I was watching a movie about the swinging 60-70s and the new york club scene and someone made a comment about taking speed and dancing for days at a time…and here I am thinking wow…I wish I could do that…lol…and me a former police officer…Sheeshhhhhhhh

#33

I was a professional distance runner when I got “sick” in 1988. Then there were few people who knew what CFS was, let alone doctors who treated it. I had to quit running and barely made it through the day teaching high school. It took me 9 years until I was somewhat back to “normal” although certainly not as strong/healthy as I was before the attack. I did find a doctor in Flint, Michigan who specializes in CFS and Fibro- it is so important to find someone who takes you seriously!!! Since then, I have been able to run and race periodically, but when I do too much, am too stressed or eat poorly I get a relapse which lasts for 3-6 months at a time. You get to know the symptoms so well that you can see a relapse starting to happen, and then you MUST take it easy. Be sure to take extra magnesium as that is one mineral that most of us are lacking. Also my doctor swears by lysine- I take up to 4,000 mg twice a day when I am relapsing and 2,000 twice a day when I am feeling better. I am always on it. Learn to deep breathe, even meditate if possible to relieve stress. There is no quick fix to this nightmare-believe me, I have tried everything, spent thousands of dollars on supplements and so called cures, but when a relapse hits, time and backing off is the only thing that will tone it down again. I know I will be dealing with this the rest of my life and it has been almost 20 years so far!!!Runnergirl

#34

The SSA rules folks out if they can find SOME job (any job in the national economy no matter where you live and where the jobs are) you can still work regardless of your disability.  

 

And "job you can do" does not even have to be based on the reality of what the experts say you can do.

Their own VocRehab guy said that there were no jobs I could do, and definitely I could not return to my prior career.  The judge ruled that I could go back to my old job.

The next hearing, their own doctor issued a bunch of orthopedic (not CFS) restrictions, their own VocRehab guy said that for those orthopedic reasons, I could not do any job.  Again, the judge ruled that there were plenty of jobs I could do. 

He made sure to note on the record that I "look pretty healthy" to make sure that the appeals court would understand that there is absolutely nothing wrong with me. 

Of course, they never schedule these hearings when I'm sicker than a dog and look like hell.

Not that it would matter -- the State Disability hearing, I was burning up with fever (Week 6), told the judge I was taking her trash can as a barf bucket, spent the hour with my head down on the table while someone else did 90% of the talking ... and when we were done, she chirped that State Voc Rehab could find a job for me.  No, they can't -- they find jobs for people who can work.  If I'd showed up in that condition to Voc Rehab, they would've told me to go home and get healthy before I came and wasted their time.

#35

Being approved for SS disability income is not the same as welfare.  Disability money is money we've paid into the government's so-called system and is meant to be there when we are retired or unable to work (any job, anywhere).  It's not based on your spouses's income ... that's welfare.  Disability payments are paid to folks who have 40 work credits and the amount is based on how much you've put into the SSD system.  People over 50 get approved more quickly than those who are younger.  The SSA is understaffed and have too many claims; therefore, it takes longer and is harder to get.  Especially since some claims (like mine) are never actually examined thoroughly and just pushed from one desk to the next.  The SSA rules folks out if they can find SOME job (any job in the national economy no matter where you live and where the jobs are) you can still work regardless of your disability.  

SuzQ (I think) was inquiring about Social Security Disability Insurance.  Here's a link to an awesome forum I'm a member of.  It's got everything you need to file a claim for SSDI, and support to go with it!  You can do it without a lawyer.

http://groups.msn.com/SocialSecurityDisabilityCoalition

It's a long process, but you can do it!  Good luck.