I just can't do anything at all...I tried...

[mngirl]

It only took me 3 hrs to do, but I paid for it all day Sunday with being physically sick ALL DAY! If I got up to move even to go from one room to another, I started to sweat, then got lightheaded, then the nausea kicked in BIG TIME! It was awful. The bade part as well, I have had nerve issues in my right arm...well doing this only made it extremely painful. I was supposed to have a lidocaine infusion this past Monday, but we got 12 inches of snow overnight so the clinic called and cancelled my appt. I couldn't get an infusion until yesterday.

My dr. also put me back on Lyrica to see if we could settle the pain with this new nerve med. I tried this back in Oct - I stopped eating for 3 weeks and then ended up in the hospital for 16 days. I took it for 2 nights (Tues and Wed) and I am alreaady having issues with eating. So, my dr. had me stop it already until Monday to see if I can get around the side effects at all. I am so afriad that I am not going to be able to handle this med. Back in Oct. it at least seemed like it was working even though I couldn't eat. Now I just can't handle the med. Which seems to be the case with a lot of stuff lately. I am afriad that my body is starting to fight everything or else it can't take it.

Anyway...I just can't believe how my body reacted on Sunday. And then I have been exhausted all week. My dr. said that my body just can't do these things anymore. How sad is that?

My work comp case at work is coming to a head too. They are stating that I am maximum medical improvement and are trying to have my restrictions set. That means that they could choose to accept and accomodate the restrictions or give me 90 days and let me go. If they do I have to find a new job, or aI can ask them to send me back to work. With my arm restrictions and all this POTS stuff, who is going to hire me? I can't type foe very long, can't lift, can't stand for any period of time or walk for very long. What in the heck am I supposed to take up as a career? I am going to apply for SSD. I am sure that at this stage of the game I will be rejected. But I think that if I lose my job I would qualify. I have this POTS stuff, Addison's and RSD or both my right and left arm as well as in my neck/head/shoulder. All of which cause me to be into the dr 3 times a week for some sort of treatment. Luckily that my dr. and I get along so well. At least he doesn't think I am crazy and he is trying to help me figure this all out and make sure that work and insurance companies pay for treatment and don't jerk me around. He is an awesome dr. I can't imagine ever losing him as my dr.

Anyway...I am still feeling crappy...It just seems as if everything is slowly getting worse.

~Lisa

[taylortotmom]

Lisa,

I am so sorry you are having such a hard time. I can identify with doing something similingly "minimal" (wallpapering is not minimal, by any means!) and paying dearly for it in the days that follow. As far as your disability issue, I can't offer any advice about Workman's Comp or employer short term/long-term disability. However, if you have your doctor's support, getting SSDI might not be too difficult. If your doctor is willing, he can prepare a letter stating that you are unable to have "gainful employment" and a list of your diagnoses. This is invaluable when and if you do apply for SSDI. My attorney told me when I was in the appeal stage, that young people with such letters often times don't even have to go to court. The judge will often make records based decisions in these cases, meaning they get decided MUCH sooner. So, just somthing to think about. Good luck!

Carmen

[gwen]

I took the wallpaper down in the bathroom last july thinking I would have to put it up before my kids bday. Well it still ain't up! I'm so sick of it and keep trying to talk myself into it but what you are describing is exactly what I think will happen. My mother in law wants to come down and help but I know she doesn't understand I might only get one strip up and then have to lay down for an hour(or longer). I hope you start feeling better soon!

[Jacquie802]

Hi LIsa,

I painted for 2-3 hours a few weeks ago and didn't feel better for 3 days....It stinks!

Jacquie

[futurehope]

Lisa,

The title of your post says "I can't do anything at all"...

I beg to differ.

There's no way I would even attempt to apply wallpaper. But that doesn't mean I can't do anything at all.

I'm sure there are some things you can do.

Try not to get down on yourself because you cannot do what you WANT to do. Focus on what you CAN do.

I just don't want you to fall into a depression over this.

[Eillyre]

I'm with futurehope, Lisa. Focus on what you can do -- thinking about the things you can't will just be depressing.

Between POTS & CFS, I can certainly sympathize with your frustration. It's hard to feel like your capabilities are just disappearing down an ever enlarging abyss. The medicine merry-go-round never helps, either. However, all is not lost. There are still things that you can do and that you will be able to do in the future. You have a good doctor on your side, too, which is great news!

Even if you don't have CFS, it is very important to pace yourself. I've learned the hard way; multi-month recovery periods from simple activities have a way of getting the message across! I'm amazed that you were able to wallpaper at all -- that's a serious undertaking! I know a professional painter who cringes whenever he has a client wanting re-walpapering done! If you were so sick afterwards, your body seems to be desperately trying to tell you that it was way to much activity at this point. Try working on doing small things first. Once you can do those without difficulty, attack something a little bit more demanding. It's just like exercise -- you have to start slow and gradually work your way up. Try keeping lists of small things that you would like to accomplish -- it's so rewarding when you finally get to cross one off the list with a triumphant flourish. That way you also have a record of your accomplishments for those days you're feeling down.

Keep your chin up! You will triumph!

From one "retired" conquer-then-crash POTSy to another,

Angela

[mom4cem]

Lisa,

That was a big undertaking, for anyone sick or not... Sorry you are paying for it big time and I hope you recover from this soon.

[Lulu]

Lisa,

I agree with futurehope and angela....reframing your approach to getting things done and how you think about them is key to getting over the sadness and crappy feeling. And yes, it is sad to lose what we've had before. It is OK to be angry and sad about it, it doesn't make you crazy. It's also OK to run around like a dervish to avoid reality or prove it wrong, especially when it's painful. And it's kind of silly, but we all do it, everyday of our lives, and we're not crazy--just human.

And since you're a human with POTS, you get extra-specially blessed with lots of battles. Battles within and without. You may consider doing what makes you strong---inside, spiritually/mentally/emotionally---focusing on what gives you balance to help you fight these battles. Part of that focus is definitely what you CAN do. And you can really do a lot, in the big picture. As cliche as it sounds, there are those worse off than you. And, no, none of it makes your loss or frustration any less real.

I have made the mistake of doing too much so many times I can't even count them. Sometimes it was a big project & easy to I.D. Other times it was something seemingly benign, like hanging out with friends/family for "just a little bit longer." Speaking for myself, I ignored those little tell-tale signs I might have been overdoing it, because it was just too painful to think of what it meant if those signs were right! But it *always* caught/catches up to me, and I had to learn (am STILL learning) the hard way to do what I can, and leave the rest. And the other, unspoken, part of that: it's OK to leave the rest. There's still A LOT that is OK with me, even though my body would like to differ sometimes. & I would bet money there is A LOT that is Ok with you, too.

It may take awhile to get it figured out, Lisa, but you are on your way!! I mean, for starters, you already know about the sneaky wallpaper and you've got a great doc on your side. You really do know so much about yourself and you're braced for good things to come your way....I wish you luck and many blessings,

peace and light,

lulu

[dmaejean]

Hi Lisa, So sorry you have had such a hard time. From my experience, you can't always tell what is going to make you crash for a couple of days. Sometimes nothing more than fixing something to eat, or driving to the store will set you back for two to three days. To me, it is worth it. I try not to be stupid, but I would rather live and pay for it later, than not live at all. Wallpaper is a little extreme though, Good luck with ssd, I am also sturggling with that, denied the first time, but I also have wonderful doc's who will do anything to help me get help. Good luck and God Bless. This forum is wonderful, isn't it? Donna

[bttrflyamby1981]

Hi my name is Amber,

this is my first time posting and I'm happy to be here.

Lisa I feel for you and I'm sorry you feel so bad. I have felt that way many times and I'm glad I'm not alone.

Learning your limits can be very frustrating but listening to them is a must.

I tend to push myself too hard and end up haveing regrets as well.

I hope I did the reply right, forgive me if I didn't.

[bttrflyamby1981]

Hi Donna,

I agree that sometimes we don't alway know when it's going to be too much.

Wouldn't it be great if we all had the advantage of knowing when to slow down.

I'm forever pushing myself, most of the time I over do it, but I turn around and do it again the next day.

So do I ever really learn? Probably not.

I have always been an active person, so I see no reason to change because of POTS. It slows me down,

sometimes stops me completely but I refuse to let it controle my life. I work around it, through sweat, tears

and good days.

wishing everyone good days,

Amber