Fibromyalgia Thread

[Tinker'n'Fun]

 

[brighteyes]

Since I seem to be the only one posting, if you have any ideas re: the following, please, even a PM will help.

I have 9 days to Disney and the Fibro is kicking my butt. Mornings are really bad and if i get up by 11am, that is an accomplishment. I do feel better in the afternoon, but I have so much to do so I am overwhelmed. Can't get DH or DS to help at all. I want to cancel their plane tickets and let them see how is feels.. But I won't that is just the anger speaking.

Anyone been here, and what did you do? I know if I write a list of what needs done each day I will feel like a failure. Do you think a large master list on the refrigerator so that everyone can check things off until we are ready. Has anyone done that and did you get the help you needed from your family.

I know my clothes and all the toiletries will make it, but I want to go and not stress. Getting harder each day to get them to understand! Ugh, thanks for letting me went. I am sure it will all get done and we will be fine, but the pre-planning stuff is knocking me down this year. Actually if I am honest, it scares me that I can't do it.

Hope everyone is doing well, I miss you all. Diane.

Tink,

So sorry you are having a rough time. Well what did I do the first time? Ran around like crazy and didn't sleep the night before we left cause I was doing stuff till the last second I left the house.

The 2nd time? Same thing, except scream and yell at my DS that I did not WANT to go to Disney with him cause he saw how much pain I was in yet refused to help. Yes, Bad MOM! I had a major feel sorry for me, pathetic moment. I was not being a fine adult at that particular time. NOT MY finest moment for sure. BTW my DS did tell me he wanted to help but just didn't, well because, he's lazy!! Yep, I let him get that way.

Long story short, I didn't get everything done but got what needed to be done, done. On the plane I didn't care one hoot how my house looked. I was going to Disney Feeling dizzy and ill at the airport at 4:00 am cause I didn't sleep again didn't make me feel too good. By the time I got to Disney and checked in and ate at the POP food court, I was ready to sleep. Waiting for our room DS swam while I tried to keep my eyes open. I begged for sleep. We slept for an hour or two then went and had dinner and started our vacation. Not ideal, but I think I will always be rushing at the last minute.

Don't worry Try not to worry. Just do what you can before you go and ask yourself, are all the little things that you didn't get done going to matter when you are at Disney? Nope? Didn't think so. Better yet, are they gonna matter in 5 years? Nope? Didn't think so.

No sense in getting all angry like some people I know on here. Not me, of course. Just do what you can, pace yourself and simply ask your family for help and admit that you cannot do it all on your own. You don't want to put yourself in a worse flare when you are at Disney and lose precious vacation time.

 

[brighteyes]

And ugggh yes, it is 5 am and I am STILL awake yet I was falling asleep at 7 pm on the couch cause I slept last night from 5 am till 7 am. So wtheck why can't I sleep tonight??? I didn't even fall asleep during the day like I normally do.

AND i took sleep meds.

Yes I am in the middle of an extremely exhausting bout of fatigue yet I cannot sleep, I don't get it.

Hoping I DO NOT get called into work tomorrow so I can sleep.

Hope you are all doing better than I am.

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[tiggspring]

Tiggs, all states should be the same. While my income was decreased while the process was going on, I had one that I learned to live with. We will never get rich on my disablity, but each month I can count on it being there...!

All states have the same rules for SSI but only RI, NY,NJ ,CA and Hawii have state short term disability insurance. all others are out of luck until SSI kicks in unless they have work place plans.

 

[tiggspring]

Since I seem to be the only one posting, if you have any ideas re: the following, please, even a PM will help.

I have 9 days to Disney and the Fibro is kicking my butt. Mornings are really bad and if i get up by 11am, that is an accomplishment. I do feel better in the afternoon, but I have so much to do so I am overwhelmed. Can't get DH or DS to help at all. I want to cancel their plane tickets and let them see how is feels.. But I won't that is just the anger speaking.

Anyone been here, and what did you do? I know if I write a list of what needs done each day I will feel like a failure. Do you think a large master list on the refrigerator so that everyone can check things off until we are ready. Has anyone done that and did you get the help you needed from your family.

I know my clothes and all the toiletries will make it, but I want to go and not stress. Getting harder each day to get them to understand! Ugh, thanks for letting me went. I am sure it will all get done and we will be fine, but the pre-planning stuff is knocking me down this year. Actually if I am honest, it scares me that I can't do it.

Hope everyone is doing well, I miss you all. Diane.

So sorry you are having a hard time so close to your trip. I was in a bit of a panic too. I was lucky that because of the timing of the trip I just bought our summer clothes and packed them as I went. My kids are a bit younger though. I had a heck of a time getting they days to rest. If you can tell them that after this weekend you will not help them pack. they are on there own because you will be in bed. My DD11 did make her own list so I dont see why your son can't take responsibilty for his bag. I think families often figure MOM will do it and jsut wait for us to give in even when we are sick. I know mine does. It took me breaking down and crying in HS to get the kids to shape up this year they never see me cry so this freaked them out a bit but I was done!

Make a master list to make yourself feel more in control and then tell them it has to be done by Sat or Sun because you are on bedrest after that! I had to put myself on bedrest for the week before both my trips so dont feel guilty. Besides will they really have fun if your sick the whole trip?

 

[tiggspring]

oh man I wrote a big long post and it got lost in the system

I cant write anymore. will try again tomorrow. Hope all is well!

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[tiggspring]

Hi Guys!!!

Just came on to tell you about a must get item for this winter. MICRO FLEECE PJ"S OMG they are wonderful!! Very light "like you have nothing on" hehehe They are also very warm. I just picked a pair up at Sams club for $17 but I'm sure will be available everywhere. I am going back to get several pairs more. usually I dont buy alot clothes for myself but this is the first thing I have ever worn that does not hurt to wear!!!


Hope this finds everone well. I'm have been having alot of nurological sysmtoms of late. My back frequently feels like its on fire. The entire surface feels like I have a sunburn then put bengay on it. Anyone else ever had this symptom??

My pain has been up but manageable, my fatigue and Migraine have been low. But the nerological stuff, tenderspots and limping with increased activity is happening daily. I just cant seem to "reset" to the new school schedule needing most if not all of my between bus runs to maintain. It burns me that I should be feeling great "for having fibro" yet I cant get in a rythum that alows me to be productive...grrr


Tink Hope your trip goes well!

Sending Pain free vibes and pixie dust to all

 

[tiggspring]

Well I jinxed myself. I am so tired today i fell asleep as soon as the kids left at 8:30. going to take DS to soccer instead of taking him and his sister to gymnastics. It is a schedule conflic we have had on Tue so I have to make a choice. since Gymnastics is a bit further away and one hour longer it will have to be soccer. Could never make it all the way to the gym today anyway. Back is on FIRE

Copy pixie hope all is well, eduke you ok? Sending good thoughts to our expectant mom who's name excapes me at the moment. Hi to the newbies and Orange Cat how is the new job.

As always hello to tink hoping you are resting for your trip in a few days and bright is your new job going ok? I know you were really looking forward to working even a few hours a week.


Thanks for the good thoughts for my DD. she has her ups and downs and is a bit confused that everone seems to be "back to normal". All and all I'm very proud of her!

Sending good vibes andPixie dust to al l

 

[tiggspring]

Guess tink not the only one to talk to herself


Sooooooooo tired


Sending pain free vibes and pixie dust to all!

 

[onnawufei]

Note to self: Look at your subscribed threads once in a while.

I recently went to the doctor and this time I brought the hubs back with me so he could put in his two cents as well. I'm really bad at articulating myself, and having him there ended up super helpful. Plus I didn't have to try and relay information to him when it was over, which is another plus.

So after my trip the doctor is going to put me on Lyrica as well as Savella. It's a good thing the hubs gets a bizarre joy out of filling my weekly pill container thing (he does, it's really strange) since I just keep getting more pills to put in it. But hopefully the Lyrica will help. The doctor also apparently doesn't think my insomnia is a big deal because I told him I'd been taking over the counter sleep aides to sleep every night and all he did was ask what I was taking. So I guess I'm good on that?

Meanwhile I leave Saturday for WDW and while i'm super excited I'm also a little nervous. We've had crazy rain since Sunday and the weather (or I'm assuming it's the weather) is making me feel like a little old lady. Actually, saying that might be offensive to little old ladies, some of which probably feel fine. If my Grandma were still alive I'm pretty sure she'd be able to take me in a wrestling match right now... which would be really strange but not entirely unlike her. Anyway, I'm hoping that the Disney magic perks me up some, which I'm sure it will. It's a little easier to ignore pain when you're at Disney as opposed to when you're sitting at your desk at work.

Well that was longer than I meant it to be. Oops!

 

[EDuke98080]

Hi Tigg! (and everyone!) I need to read back and catch up w/ everything. Hope Tink is having a great trip and all is well with everyone else! Will catch up soon....

~Erika

 

[Tinker'n'Fun]

 

[Ashton7]

Just a quick post. We are at DisneyQuest so I am using their internet. This trip has been very hard on me. We are having a good time, but it is now official that after this trip I will no longer be able to walk the parks. The kids and hubby have been amazing and understanding. By far the least we have ever done on a trip and the kids even asked not to go to MNSSHP today because I wouldn't be able to do stuff. It has been both magical and scary sad. I will update when we get home...

Miss you all

I'm sorry to hear you're having a hard time. Living close to the parks for over 20 years now, I rarely went for years and years because although I could walk around the parks, I would pay for it with a major flare for a week or longer afterwards. Then one time -- and I don't even remember why -- I rented an ECV. It was wonderful. I could visit the park and not have to suffer for it so badly later. The only bad thing became the ever increasing price Disney charges for an ECV rental. We finally bought me one of my own -- actually got it at a garage sale for $500! Did you consider an ECV for your trip? They really are a lifesaver.

 

[tiggspring]

Just a quick post. We are at DisneyQuest so I am using their internet. This trip has been very hard on me. We are having a good time, but it is now official that after this trip I will no longer be able to walk the parks. The kids and hubby have been amazing and understanding. By far the least we have ever done on a trip and the kids even asked not to go to MNSSHP today because I wouldn't be able to do stuff. It has been both magical and scary sad. I will update when we get home...

Miss you all

I'm so sorry this trip is not as magical as trips in the past have been . Hang in there and enjoy what you can.

 

[tiggspring]

Just a quick post. We are at DisneyQuest so I am using their internet. This trip has been very hard on me. We are having a good time, but it is now official that after this trip I will no longer be able to walk the parks. The kids and hubby have been amazing and understanding. By far the least we have ever done on a trip and the kids even asked not to go to MNSSHP today because I wouldn't be able to do stuff. It has been both magical and scary sad. I will update when we get home...

Miss you all

I'm so sorry this trip is not as magical as trips in the past have been . Hang in there and enjoy what you can.

 

[brighteyes]

Aww Tink I was hoping you would recover before you left. I am so sorry that you're trip is much more difficult this trip. I understand what it is like to "not" be able to do the parks like you used to.

In a word, or two, it really sucks! I hope you are still enjoying the magic and can enjoy what is left of your trip. See you soon when you get back!