cfs rant

[jann1033]

I have CFS - official diagnosis in 2001 after years of testing, surgeries, etc. I am at WDW right now!

I got here yesterday but did not try to go to the parks today. I did go to Downtown Disney.

I rented an ECV last September when I was at WDW and that helped SO MUCH. What has helped me more than anything the past few years is to not over extend myself. If I overdo I get into a deficit that literally will take months to overcome.

I know first hand about being unable to have the energy to take a shower. It becomes an ordeal just to brush your teeth. You take care of basic hygiene just because you have to, but can be very difficult.

Someone that I have known for about 6 years was shocked the other day to hear that I have CFS. She said "You are on the go more than anyone I know." She does not know about the days and weeks where it takes every ounce of energy just to get dressed as I don't talk about those days.

you know i think that is the worst thing about cfs( well not the worst but up there among the top 25 worst things about cfs)
since they only see you on your best days they assume you are like that all the time...i can not count on both hands how many tell me they have a knowledge of CFS then in the next breath ask me what i "do" all day...uh i lay on the couch for most of it, what do they think ? i have contemplated having husband drive me around to people's houses who think i am a "slacker faker hypocondriac whatever" some day when i am at my worst and just letting them get a gander( and whiff) of me then that ought to stop the rumors once and for all

 

[geetey]

for you, Jann. I hope the medical issue resolves itself in a positive manner for you!

I find that pacing is key. If I could shake the 'fog', I think I could handle some of the other things better. It's frustrating to go over things again and again, when I *know* that I *know* this stuff! (all of the photographic jargon comes to mind!)

My kids want to know why they have to shower everyday but I don't. Thank goodness they are cool with me sleeping in late each morning when it isn't a school day.

 

[Ariel07]

Just had to post to "vent" a bit -

I have been going through such a bad spell with my CFS (since January) and this past week has just been awful. Cannot leave the house and barely want to get out of bed.

But I am so frustrated and depressed, because I was desperately trying to give myself something "happy" to look forward to - like a trip to Disney and/or Universal. I live in Florida, so its only a few hours drive away. I actually have a free ticket to Universal that has to be used by the end of September. I was hoping I could make it there sometime that month, even just for a couple of nights. But now that we are already beginning yet another month and still no improvement...well it aint loking so good!

Now I know the parks will always be there, but it's the whole big picture of it all - just so sick of being so sick and TIRED and not being able to plan for anything!!!


Sorry y'all...just needed to vent!!

 

[jann1033]

Just had to post to "vent" a bit -

I have been going through such a bad spell with my CFS (since January) and this past week has just been awful. Cannot leave the house and barely want to get out of bed.

But I am so frustrated and depressed, because I was desperately trying to give myself something "happy" to look forward to - like a trip to Disney and/or Universal. I live in Florida, so its only a few hours drive away. I actually have a free ticket to Universal that has to be used by the end of September. I was hoping I could make it there sometime that month, even just for a couple of nights. But now that we are already beginning yet another month and still no improvement...well it aint loking so good!

Now I know the parks will always be there, but it's the whole big picture of it all - just so sick of being so sick and TIRED and not being able to plan for anything!!!


Sorry y'all...just needed to vent!!

lol i know the feeling, we had aps a few yrs back and just couldn't get there for a second trip..i just felt that clock tick tocking away...i hope you feel better soon enough to make it

 

[geetey]

Jann, How did your doctor's visit go? Has the medicaid issue been resolved? I hope so! Sending some your way!

 

[jann1033]

Jann, How did your doctor's visit go? Has the medicaid issue been resolved? I hope so! Sending some your way!

well the medicaid is resolved but not in my favor not sure if this is everywhere, but in Ohio, they "allow" you $500 and spouse $160 income for expenses per month then anything over that you need to spend dollar for dollar of your total income then medicaid will kick in ( ie if you have $1600 a month income, you pay $1000 a month then you can have medicaid) so since husband's 2007 income was thankfully over $660 a month, so long medicaid the social worker suggested since i can't get insurance if we got divorced i wouldn't have to count his income...uh we've been married for 30+ yrs... don't think i will take that option. nothing i can do about so might as well laugh at how dumb it is. even the social worker said she didn't know how they expect you to live on $500 a month..must be a much cheaper cost of living where ever they decided that one..or maybe it was written in 1786?
so at my last dr visit for a long time( ) he told me he thinks fibro and cfs are the same thing but at least he didn't act like i was nutty. i still like him, he acts pretty much like he used to so i think if i take in so up to date cfs stuff he'll read it. and he is really up on diabetes so even though mine is seeming to be ok i'm glad to feel he at least knows a lot about that. it's weird how that affects everything. i had an ear infection( swimmers ear) and they had to give me cipro drops ( again, what does that make, maybe 10 times) and a z pack to get rid of it they said due to the diabetes...so now i have 2 things that affect everything... who'd a thunk it. but i probably have a large enough reserve of cipro in my body they could use me to sniff out anthrax and it wouldn't affect me at all....hmm maybe i should apply for that job since i could do it laying down in my jammies
and if you read my "suicidal post", it causes depression as well..my chronic illness collection is growing... but at least the lexapro seems to be kicking in..good thing since i'm supposed to go to Toronto with my sis and mom this weekend which would drive even a sane person crazy that should be some sight, my RA mom with a heart condition, me and my healthy health obsessed sister the jogger